Appendix 1
A Health Needs Assessment (HNA)
for Adults with Learning Disabilities
in Salford
Full Technical Assessment
July 2011
Version:
Date of issue:
Date of review:
Status:
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0.4
July 2011
TBC
FINAL
Rachael Musgrave, StR in Public Health
Learning disabilities in Salford: A Health Need Assessment 2011
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A Health Needs Assessment (HNA) for Adults with Learning Disabilities
in Salford. Full Technical Assessment.
Rachael Musgrave, Speciality Registrar in Public Health
Cath Rotherham, Healthcare Facilitator
Nigel Johnson, Commissioning Officer
Dave Clemmett, Assistant Director (Provider)
David Herne, Deputy Director of Public Health
Andrew Clough, Director of Clinical Professional Leadership
0. 4
FINAL
25/07/2011
97
Public Health Shared Drive
Learning Difficulties in Salford. Easy Read Version.
A Health Needs Assessment (HNA) for Adults with Learning Disabilities
in Salford. Executive Summary.
DISTRIBUTION HISTORY
NAME/GROUP
DESIGNATION
Cath Rotherham
Nigel Johnson
Dave Clemmett
David Herne
Andrew Clough
REVISION HISTORY
DATE OF ISSUE
01/03/2011
Not Circulated
25/07/2011
DATE OF
ISSUE
VERSION
Healthcare Facilitator (NHS Salford)
Commissioning Officer (Salford City
Council)
Assistant Director (Provider)
Deputy Director of Public Health
01/03/2011
01/03/2011
0.1
0.1
01/03/2011
01/03/2011
0.1
0.1
Director of Clinical Professional
Leadership
01/03/2011
0.1
VERSION
0.1
0.2
0.3
2
Learning disabilities in Salford: A Health Need Assessment 2011
CONTENTS
EXECUTIVE SUMMARY
5-6
1. LEARNING DISABILITES – AN OVERVIEW
2
LEARNING DIFFICULTIES IN SALFORD
7 - 10
11 - 19
3. POLICY, EVIDENCE & LEADERSHIP
20 - 35
4
INEQUALITIES IN HEALTH STATUS
36 - 47
5
INEQUALITIES IN WELLBEING
48 - 58
6
INEQUALITIES IN ACCESS
59 - 73
7. CONCLUSIONS
74 - 87
8. MAINTAINING MOMENTUM: RECOMMENDATIONS
88 - 90
APPENDIX 1: EVIDENCE OF EFFECTIVENESS
92 - 96
APPENDIX 2: ICD10 CODE DEFINITIONS
97
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Learning disabilities in Salford: A Health Need Assessment 2011
TABLES/FIGURES/GRAPHS/TEXT BOXES
LIST OF TABLES
Table 1
Leading Causes of Death by Age Group 2006 - 2010
PAGE
39
LIST OF FIGURES
Figure 1
LD conditions by type for Salford residents
12
Figure 2
Age profiles for people with LD in Salford
17
Figure 3
Salford LD Service Governance
35
Figure 4
Map showing location of current LD clients across Salford
52
LIST OF GRAPHS
Graph 1
2010 – 2030 Salford LD population projections
13
Graph 2
2010 – 2030 Salford adults with mild LD by age
14
Graph 3
2010 – 2030 Population estimates & projections, by age group, for
people with moderate LD in Salford
15
Graph 4
2010 – 2030 Population estimates & projections, by age group, for
people with severe LD in Salford
16
Graph 5
LD Prevalence in Salford, by age group, 2010- 2030
18
Graph 6
LD deaths in Salford by year & age group, 2006 - 2010
38
Graph 7
LD deaths in Salford by cause, 2006 - 2010
38
Graph 8
Causes of death by age group, 2006 - 2010
40
Graph 9
BMI data for Salford & Salford LD Population
55
LIST OF TEXT BOXES
Box 3.1
Recommendations for specialist inpatient LD services
24
Box 3.2
CQC Assessment Questions
31
Box 5.1
Working in Salford
50
Box 5.2
Independent living in Salford
52
Box 5.3
A Salford success story
54
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Learning disabilities in Salford: A Health Need Assessment 2011
EXECUTIVE SUMMARY
In the last few years it has become increasingly recognised that people with learning
disabilities experience many types of health inequalities. Improving the health, and
having a better understanding of the health needs of people with learning disabilities, is
now a high priority. The aim of this Health Needs Assessment is to systematically assess
the health needs of adults with learning disabilities across Salford; review the evidence
base for health need and effectiveness of services, identify gaps in current service
provision and to make recommendations for changes to meet their needs and reduce the
health inequalities experienced by this population group.
The key messages of this HNA are:

There are many national policies and best practice documents that highlight the
health issues of adults with learning disabilities. Policy and evidence acknowledge
the many, increasing and often unmet health needs of people with LD, which are
recognised, in part, as the product of societal barriers.

In Salford there are over 4000 adults with LD, demographic changes mean that the
LD population is increasing, shifting and emerging. Within this diverse population
group; older people, people from ethnic minorities, those with severe and complex
needs and those with mild LD present particular and differing needs.

The health of people with LD has improved and life expectancy has increased
however both quality and quantity of life remain significantly less than the non LD
population. Local data indicates that Cancer and CVD are the leading cause of death
amongst people with LD in Salford, followed by diseases of the nervous system and
respiratory disease.

The LD population are particularly vulnerable to both health and social inequalities,
which create and exacerbate poor health.

There is long standing commitment to improving the health of people with LD in
Salford and this has resulted in considerable partnership working. Success has
occurred where interested individuals have worked with Learning Difficulty Services
to improve access to mainstream services. However, strategically this has not been
imbedded in documents or practice across all areas.

Access to all health services for people with LD is problematic. There are a number
of barriers to services and often health need does not correspond with service
demand.

There are a number of areas where action can be enhanced locally.

This HNA provides evidence of the current and future significance of health need
amongst people with LD; necessitating continued partnership action and investment.
5
Learning disabilities in Salford: A Health Need Assessment 2011
Recommendations to enhance current action include:
This HNA has identified a number of areas where action can be enhanced locally and
makes a number of recommendations in response. These recommendations are divided
into two parts consisting of overarching recommendations for all partners; and service
specific recommendations for health promotion and screening, primary and secondary
care and specialist services. Service specific recommendations are included in Section 8
of this report. The overarching recommendations are summarised below:
1. There needs to be stronger recognition of the health needs of people with
LD in local strategy and commissioning.
2. The LD Partnership Board, with support from the Public Health Department,
should influence GP commissioning, the PCT and SRFT corporate policy
and practice to raise the profile of the health needs of adults with LD.
3. Information systems should be developed or improved to enhance
information about, and to monitor outcomes for, people with LD.
4. The role of adults with LD and their carers in health service planning
should be increased. This should include support for patient and carers to
better navigate health services.
5. A detailed action plan should be developed to provide a framework through
which to implement the recommendations outlined in this needs
assessment to ensure continuing improvement in health services for adults
with learning disabilities.
This HNA reflects the importance of working in partnership to address the health needs
of people with learning disabilities and requires all organisations to consider these
recommendations and how they can be implemented.
6
Learning disabilities in Salford: A Health Need Assessment 2011
1.
LEARNING DISABILITIES – AN OVERVIEW
1.1
INTRODUCTION
The health and strength of a society can be measured by how well it cares for its most
vulnerable members. Adults with learning disabilities (LD), especially those with severe
disability and the most complex needs, are some of the most vulnerable and socially
excluded people in society and tend to have increased health needs which differ
qualitatively from the rest of the population. Furthermore although people with learning
disabilities have more health problems than other people, they find it harder to access
the services they need. They are also at risk of social exclusion, affecting their quality of
life through exemption from employment, relationships and other life opportunities.
There is also evidence that the prevalence of LD is increasing, and the population
ageing, placing escalated demand on health and social care services. Moreover, the LD
population is evolving, with increasing numbers of children entering adulthood with more
complex needs whilst older adults with LD are living longer. As a consequence the
needs of people with LD are both shifting and emerging.
For the last 15 years the Government has highlighted the need to improve health
services for people with learning disabilities. An independent inquiry into access to
healthcare for people with learning disabilities found convincing evidence that people
with learning disabilities have higher levels of unmet need and receive less effective
treatment, despite the fact that the Disability Discrimination Act and Mental Capacity Act
set out a clear legal framework for the delivery of equal treatment. The Government
White Paper, Valuing People (2001) sought to address these issues outlining 11
objectives which revolve around 4 key principles including Rights, Independence, Choice
and Inclusion. Chief among the obstacles to delivering and evaluating the effectiveness
of health services for people with learning disabilities is a lack of information about them.
This HNA explores the health and social care needs of adults with LD across Salford in
order to present a picture of local health need and to identify current and future priorities.
1.2
METHODOLOGY
Health need assessment (HNA) is a systematic method for reviewing the health issues
facing a population, leading to a set of agreed priorities and resource allocation that will
improve health and reduce health inequalities. Strategic in approach, HNA identify areas
for development and attention, resulting in needs based recommendations which are
used to plan and commission services, develop policy and to help establish future
priorities.
Crucially, HNA involves the active identification of need rather than a passive response
to demand. Need implies the capacity to benefit from an intervention and can be divided
into three types:
 Felt need:
What people consider/say they need
 Expressed need: Needs expressed by action e.g. visiting the GP
 Normative need:
What health professionals define as need
This HNA takes an epidemiological approach, the purpose of which is to inform
pragmatic and effective strategy decisions.
7
Learning disabilities in Salford: A Health Need Assessment 2011
1.2.1 Scope
The main focus of this needs assessment is on the adult population of persons in Salford
with a learning disability. Unless otherwise stated therefore the figures and tables are
adult-based. Where younger age group data have been included this is for the purposes
of illustrating a forthcoming trend which can be predicated to impact on the analysis of
issues relating to the adult learning disability population.
1.2.2 Aim
To provide recommendations for key stakeholders based on the needs and priorities of
adults with Learning Disabilities (LD) across Salford, through health needs assessment.
1.2.3 Objectives






To describe current population profiles and future population projections for
adults with LD and the associated impact on health need.
To outline the physical, social and mental health need of adults with LD.
To summarise the current policy and evidence base with regard to LD.
To describe and analyse LD health need compared to the availability of local
services.
To consult with expert stakeholders including commissioners, providers,
service users and carers to inform this need analysis.
To provide a series of recommendations; interpreting quantitative and
qualitative data, information from expert stakeholders and evidence/policy; to
inform future service planning.
1.2.4 Inclusion criteria
Health needs for adults with a learning difficulty. This includes both those formally
identified and engaged with local services and those currently ‘unknown’ to services.
1.2.5 Age range
Adults are defined as those aged over 18 years. The health needs of children with LD
are not addressed within this needs assessment.
1.2.6 Population
The population of interest includes all adults with a learning disability whom are resident
in Salford or those who are registered with a Salford GP.
1.2.7 Exclusion criteria
The clinical management of LD health needs or related conditions. Early identification of
LD, including antenatal and postnatal screening, is also excluded.
1.3
Defining & classifying learning disabilities
Valuing People, the 2001 White Paper on the health and social care of people with
learning disabilities, included the following definition of learning disabilities. ‘Learning
disability includes the presence of:
 a significantly reduced ability to understand new or complex information, to
learn new skills (impaired intelligence), with;
 a reduced ability to cope independently (impaired social functioning);
 which started before adulthood, with a lasting effect on development.’
8
Learning disabilities in Salford: A Health Need Assessment 2011
This definition is broadly consistent with that used in the current version of the World
Health Organisation’s International Classification of Disease (ICD-10). However many
people with learning disabilities prefer to use the term ‘learning difficulty’. More recently
the term ‘intellectual disability’ has also been used to describe people with severe and
profound learning disabilities. All three terms are interchangeable when used in the
context of health and social care for adults and as such will be used throughout this
report.
Within the clinical context, sub-classifications of mild, moderate, severe and profound LD
are also used. These are defined by measuring impairment of intellectual functioning
using psychometric tests to quantify IQ (Intelligence Quotient).
The average IQ is 100. Deviations below the population average of 100 are used to
define clinical sub classifications as follows:




Mild LD =
Moderate LD =
Severe LD =
Profound LD =
IQ Score 50 – 70
IQ Score 35 – 50
IQ Score 20 – 35
IQ Score Less than 20
World Health Organisation (1992)
These definitions should be viewed alongside the social model of disability which
proposes that systemic barriers, negative attitudes and exclusion by society (purposely
or inadvertently) are the ultimate factors defining who is disabled and who is not in a
particular society. The model does not deny that some individual differences lead to
individual limitations or impairments, but rather that these are not the cause of
individuals being excluded.
1.4
The use of terms - general



Impairment – the loss or abnormality of a body structure or of a physiological
function;
Activity – the nature and extent of functioning at the level of the person.
Activities may be limited in nature, duration and quality;
Participation – the nature and extent of a person’s involvement in life
situations in relation to impairment, activities, health conditions and
contextual factors (element of the environment, e.g. buildings, services and
community attitudes).
1.4.1 Partial categories (overlap) of learning disabilities
There is an overlap between intelligence and learning categories. For example,
individuals with autistic spectrum disorders (ASD), who are not intellectually impaired,
may still have some degree of learning disability.
1.4.2 Physical impairments: aetiological and pathological groups
There are a large number of identifiable conditions, mainly secondary to chromosomal
abnormalities, that are often or always associated with learning disabilities, such as
Down’s syndrome and fragile X syndrome.
9
Learning disabilities in Salford: A Health Need Assessment 2011
1.4.3 Syndromes of impairments and/or disabilities
This covers impairments and disabilities, such as epilepsy and cerebral palsy, mental
illness and developmental disorders, e.g. ASD. Challenging behaviours are also included
here, although they are less well defined. These conditions all occur more frequently in
people with learning disabilities. They may be found together with any underlying
aetiology, although some associations are more common than others, e.g. fragile X
syndrome and ASD.
1.4.4 Specific restriction of activities: losses of function
People with learning disabilities have higher frequencies of specific motor and sensory
disabilities, such as hearing and mobility problems.
1.4.5 Restriction of participation: social consequences
This refers to the social difficulties people with learning disabilities may experience, such
as lack of housing and employment or limited relationships and social support networks.
1.4.6 Restriction of participation: carers and families
Families and carers of people with learning disabilities may experience significant
restriction of participation because they are unable to maintain paid employment or to
sustain family relationships, for example.
10
Learning disabilities in Salford: A Health Need Assessment 2011
2.
LEARNING DIFFICULTIES IN SALFORD
MAIN MESSAGES

The size, structure and spectrum of the LD population is varied as a result of a
series of cultural, medical and technological advances. This inevitably dictates
shifting health need.

In Salford there are approximately 4295 adults with a learning difficulty. Of these
21% (803) are estimated to have a moderate or severe LD.

Whilst much is known about adults with moderate and severe LD there is limited
data for adults with mild LD.

The largest birth cohorts include those aged 25 – 44 years. There is also an
increasing number of people entering adulthood with complex physical needs.

The LD population is increasingly ageing as a consequence of improved health
and technology. This changing demography represents new and emerging
challenges.

Very little is known about the ethnicity of adults with LD. However evidence
suggests that there is an increased prevalence of LD in the British Asian
population.
2.1
DEMOGRAPHIC CHARACTERISTICS
Understanding the demography of the LD population is crucially important, not only
because of the wide spectrum of LD which dictates diverse health need, but also
because the LD population is so dramatically changing. Improving health and advancing
technology are increasing life expectancy. As a consequence people with LD are
entering adulthood with complex physical needs and are living longer. Furthermore, a
series of cultural, medical and technological advances have impacted upon the LD
population including:
 An overall decrease in the numbers of young children since the late 1960’s
 The impact of the oral contraception on conceptions in older women e.g.
those associated with the greatest risk of chromosomal abnormality;
 Antenatal screening for Down’s Syndrome, amniocentesis for older women
and selective termination;
 Availability of neonatal care and consequent decreases in early mortality,
particularly of low and very low birth weight babies;
 New technologies, e.g. new anti-convulsants and advances in cardiac and
gastrointestinal surgery, alongside improvements in general medical care
leading to increased long-term survival;
 Immunisation programmes which decreased encephalitis, encephalopathies
and rubella associated prenatal damage.
11
Learning disabilities in Salford: A Health Need Assessment 2011
These factors have had a differing effect on the size of birth cohorts, which vary
significantly, and the spectrum of LD.
2.1.1 Prevalence and incidence of LD in Salford
In the UK there are 1.5 million children and adults with a learning disability. Most
population figures for the UK have been determined from service contact, often derived
from case registries and more recently from GP records gathered as part of the annual
health check. As a consequence, more is known about people with moderate or severe
impairment and co-existing conditions (e.g. those in touch with services) than about the
much larger group of people with relatively uncomplicated, mild or borderline intellectual
impairment.
Current estimates, using the Projecting Adult Needs & Service Information (PANSI) and
Projecting Older People Population Information (POPPI) data systems, indicate that
there are approximately 42951 adults with a learning difficulty living in Salford. Of these
21% (896) are estimated to have moderate or severe learning difficulties. This data
corresponds with information from both local authority records and GP records from the
annual health check; which indicate that there are between 911(data from GP records)
and 959 (data from Salford City Council) adults with moderate or severe LD registered
with services in Salford.
For those with moderate or severe LD in Salford Congenital Cerebal Palsy is the most
prevalent condition type (See Figure 1).
Figure 1: LD Conditions by type for Salford residents
Prevalent LD Conditions by Type in Salford
1%
7%
3%
19%
3%
5%
2%
1%
3%
12%
3%
41%
Down's Syndrome
Aspergers Syndrome
Prader-Willi Syndrome
Congential Cerebal Palsy
Fragile X Syndrome
Phenylketonuria
Angelman Syndrome
Noonams Syndrome
Tuberous Styndrome
Neurofibromatosis
Sturge-Wber Syndrome
Non Congential Cerebal Palsy
Source: NHS Salford GP Registers
1
This data is based on prevalence rates in a report by Emerson & Hatton of the Institute for Health Research, Lancaster
University (2004) applied to ONS population projections.
12
Learning disabilities in Salford: A Health Need Assessment 2011
2.1.2 Salford LD Population Projections
The number of adults with learning disabilities is predicted to increase by 14 per cent
between 2001 and 20212. National projections also anticipate sustained population
growth during the period 2009 – 2026; with a corresponding annual increase in service
demand estimated between 1.04% and 7.94%2. All scenarios dictate an increased need
for both health and social care services for adults with LD. Changes in demand are
driven principally by the following three main factors:
 Decreasing mortality among people with learning disabilities, especially in
older age ranges and among children with severe and complex needs;
 The impact of changes in fertility over the past two decades in the general
population;
 The ageing of the ‘baby boomers’, among whom there appears to be an
increased incidence of learning disabilities2.
Population projections for Salford suggest that the number of people with LD will have
increased to 4885 by 2030; with the majority of these (78%) having a mild to moderate
learning difficulty (See Graph 1).
Graph 1: 2010 – 2030 Salford LD Population Projections
LD Population Projections 2010 -2030
4500
5000
4000
4900
4800
3500
4700
3000
Number
4600
2500
4500
2000
4400
1500
4300
1000
4200
500
4100
0
4000
2010
2015
2020
2025
2030
Year
Mild
Moderate or Severe
All
Source: PANSI & POPPI Data System
2.1.3 Population Segmentation
Adults with learning difficulties are not a homogenous group. The wide spectrum of
learning difficulties present differences in both range and severity. Inevitably these
differences manifest diverse health need; affecting the kind of support each person
2
Emerson, E & Hatton, C (2008) Estimating Future Need for Adult Social Care Services for People with Learning
Disabilities in England. Centre for Disability Research. CeDR Research Report 2008:6. November 2008.
13
Learning disabilities in Salford: A Health Need Assessment 2011
requires. It is therefore important to understand the segmentation of the LD population in
order to inform accurate needs assessment. Typically learning difficulties are segmented
into three groups; those with mild LD, those with moderate LD and those with severe LD.
2.1.3.1Mild Learning Difficulties
Establishing the precise number of adults with mild LD is problematic as existing
estimates of total prevalence underestimate the number in this group. However, based
on current population projections and research on prevalence, there are approximately
3399 adults with mild LD living in Salford.
Whilst this group do not experience the same health problems, nor are as dependent on
health services, as those with moderate or severe learning difficulties; people with mild
LD have a shorter life expectancy than that of the general population. Furthermore, they
may be in contact with, and or dependent on, a number of other public services and
particularly vulnerable to social inequalities which are a strong predictor of poor health
outcomes. Graph 2 illustrates the age profiles and projections for adults with mild LD.
Graph 2: 201 – 2030 Salford Adults with Mild LD by age
Adults, by age, with Mild LD living in Salford 2010 - 2030
900
800
700
Number
600
500
400
300
200
100
0
2010
2015
2020
2025
2030
Year
18 - 24
25 - 34
35 - 44
45 - 54
55 - 64
65 - 74
74 - 84
>85
Source: PANSI & POPPI Data System
2.1.3.2 Moderate Learning Difficulties
Much more is understood about people with moderate learning difficulties as they are
invariably ‘known to’ or ‘engaged with’ health and social care services. Current estimates
suggest that there are 584 people aged 18 – 64 years with moderate learning difficulties
living in Salford. By 2030 this figure is expected to increase by 16% to 677.
14
Learning disabilities in Salford: A Health Need Assessment 2011
Graph 3: 2010 – 2030 Population estimates and projections, by age group, for people with
moderate LD in Salford
People aged 18 -64 years with Moderate LD living in Salford 2010 - 2030
200
180
160
140
Number
120
100
80
60
40
20
0
2010
2015
2020
2025
2030
45 - 54
55 - 64
Year
18 - 24
25 - 34
35 - 44
Source: PANSI & POPPI Data System
The biggest increase in the number of people living with moderate LD is expected in the
age groups 25 – 34 years (up 27% by 2030) and 35 – 44 years (up 30% by 2030). Age
profiles and projections for adults with moderate LD are illustrated in Graph 3 above.
Owing to the small number of older people living with LD in Salford it is not possible to
estimate the exact number of people with moderate LD aged over 65. However,
combined estimates suggest that there are a further 93 people aged 65+ with moderate
or severe LD living in Salford.
2.1.3.3 Severe Learning Difficulties
People with severe LD represent approximately 6% of the total LD population. These
people often experience the poorest health outcomes; shortest life expectancy and are
very dependent on both services and carers. For people with complex needs there are
particular health challenges such as muscular skeletal impairment, sensory difficulties
and epilepsy.
Graph 4 (on page 18) illustrates the age profiles for adults aged 18 – 64 years with
severe LD in Salford and indicates that there are 219 people aged 18 -64 years with
severe LD currently living in Salford. Reflecting LD population trends the number of
people with severe LD, living in Salford, is expected to increase by 16% by 2030.
15
Learning disabilities in Salford: A Health Need Assessment 2011
Graph 4: 2010 – 2030 Population estimates and projections, by age group, for people with
severe LD in Salford
Age profiles for people with Severe LD living in Salford 2010 - 2030
70
60
Number
50
40
30
20
10
0
2010
2015
2020
2025
2030
45 - 54
55 - 64
Year
18 - 24
25 - 34
35 - 44
Source: PANSI & POPPI Data System
Age profile data also shows that there are proportionally more adults aged 18 – 34 years
with severe LD compared with those aged 35 and over. However, over the next 20 years
the differences between age groups will diminish as a consequence of improving health
and advancing technology. Therefore, it is anticipated that there will be more older adults
with severe LD. Data for adults aged over 65 years with severe LD is not currently
available.
2.1.4 Austistic Spectrum Disorder (ASD)
There are many different types of autism and the range of symptoms is very wide. All
types of autistic spectrum disorder (ASD) share the following behavioural criteria,
regardless of diagnostic sub-type or level of ability:
 Qualitative impairment in reciprocal social interaction;
 Qualitative impairment in verbal and non-verbal communication;
 Markedly restricted repertoire of activities and interests.
The National Autistic Society suggest that whilst some people with ASD never come to
the attention of services as having special needs there are others who may be able
intellectually but require support from services because the degree of social interaction
impairment hampers their chances of employment and achieving independence.
Furthermore, there is a small proportion of people who have both a learning difficulty and
ASD which may further compound the health and social inequalities they experience.
16
Learning disabilities in Salford: A Health Need Assessment 2011
According to national estimates there are approximately 1,500 people with ASD living in
Salford; a figure which is anticipated to increase. Furthermore, there has been a locally
acknowledged increase in demand for services by this group. It is therefore important to
recognise and consider the particular needs of this sometimes peripheral population of
the LD community.
2.1.5 Age
Population age profiles are an important factor when assessing health need. Age is a
particularly significant component of needs assessment for the LD population as its
structure has been markedly affected by cultural, medical and technological
developments during the last 50 years. As a result successive birth cohorts in the UK are
of differing size. Currently, national data suggests that individuals in the largest cohort
are those aged in their mid thirties. This is reflected in local data (See Figure 2).
Figure 2: Age Profiles for people with LD in Salford
LD by age group in Salford 2009/2010
65 - 74
>75
18 - 24
55 - 64
25 - 34
45 - 54
35 - 44
18 - 24
25 - 34
35 - 44
45 - 54
55 - 64
65 - 74
>75
Source: NHS Salford GP Registers
As an aging population generally the proportion of older people is anticipated to
increase. This pattern is reflected in data for the LD population. However, this increase is
expected to be more pronounced in the LD population as a consequence of improved
health and technology as well as the effect of large and ageing birth cohorts. In Salford,
11% of the adults, known to Salford Social Services as having a learning difficulty, are
65 years or older. However, the number of adults with learning disabilities aged over 60
is predicted to increase by 36% between 2001 and 20213. Furthermore, given that the
life expectancy of those with a mild LD is now approaching that of the general
population, it has been predicted that the proportion of people with Learning Disabilities
3
Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in England, Institute for Health
Research, Lancaster University (2004)
17
Learning disabilities in Salford: A Health Need Assessment 2011
over 65 years of age will have doubled by 20204. Older adults generally are at increased
risk of long term illness and disease combined with the physical challenges of old age.
For older adults with LD these represent additional health and social care needs.
Conversely, younger people with profound and complex physical and learning difficulties
entering adulthood represent a new generation of adults whose needs may not be
currently well understood.
Graph 5 illustrates current and projected prevalence in Salford by age group for the
period 2010 – 2030. This changing demography represents new and emerging
challenges.
Graph 5: LD Prevalence in Salford, by age group, 2010 - 2030
LD Prevalence Estimates and Projections, by age group, 2010 - 2030
1200
1000
Number
800
600
400
200
0
2010
2015
2020
2025
2030
Year
18 - 24
25 - 34
35 - 44
45 - 54
55 - 64
65 - 74
74 - 84
>85
Source: PANSI & POPPI Data System
2.1.6 Ethnicity
It has been suggested that people with learning difficulties from all ethnic minorities in
the UK experience insufficient and inadequate services despite sometimes desperate
levels of need5. Furthermore, morbidity and mortality is higher amongst adults with
learning difficulties from an ethnic minority6. Despite this both national and local data on
the ethnicity of adults with LD is largely speculative. Existing available local data, derived
from Salford City Council, indicates that 3% of service users are Jewish and 3% are from
other ethnicities including people identified as Irish, Chinese, Pakistani, Arabic,
Caribbean, Black British, Indian and mixed.
4
Janicki, M.P., McCallion, P., & Dalton, A.J. (2000). Supporting people with dementia in community settings. In Janicki,
M.P. & Ansello, E. (Eds.). Community supports for aging adults with lifelong disabilities (pp.381-406). Baltimore: Paul H.
Brookes.
5
Hatton, C (2005) Poorly Served. Community Care; pp. 36 – 37.
6
Mir, G et al (2004) Learning difficulties and ethnicity. Department of Health. London.
18
Learning disabilities in Salford: A Health Need Assessment 2011
There is evidence to suggest that there is an increased prevalence of severe LD in the
British Asian population. The Centre for Disability Research therefore suggest that local
prevalence should take account of ethnicity adjusting up in areas with a large population
of south Asian communities.
19
Learning disabilities in Salford: A Health Need Assessment 2011
3.
POLICY, EVIDENCE & LEADERSHIP
MAIN MESSAGES

There are many national policies and best practice documents that highlight the
health issues of adults with learning disabilities. In recent years, learning
disabilities has achieved a high prominence at a national and regional level.

Key local strategies, across the partnership, make limited specific reference to the
health needs of adults with LD in Salford.

At a local level, leadership and governance are provided through the Learning
Difficulties Partnership Board.

Learning disabilities is a high priority for both the PCT and the Local Authority;
and there is joint commissioning taking place locally to implement the
recommendations made in national documents.

There is regular performance monitoring by both the Strategic Health Authority
and the Commission for Quality care on aspects related to the health of people
with learning disability.
3.1
POLICY CONTEXT
A number of documents have been published recently that highlight concerns relating to
the health and social care needs, as well as services received, by people with learning
disabilities. These reports, together with government policy, are the key drivers for taking
forward work locally to improve the overall health, access to health services and the
services received by people with learning disabilities across Salford.
3.2 NATIONAL POLICY
7
Valuing People recognised that people with learning disabilities are amongst the most
marginalised and socially-excluded population group. The White Paper set out the
Government’s commitment to improving the life chances of people with learning
disabilities, through close partnership working between different agencies to enable
people with learning disabilities to live full and active lives. The vision of the document
was based on the 4 key principles of Rights, Independence, Choice and Inclusion. The
White Paper set out the following actions specifically related to health:
 Action to reduce health inequalities: explore the feasibility of establishing a
confidential inquiry into mortality among people with learning disabilities.
 Action to challenge discrimination against people with learning disabilities from
minority ethnic communities.
 Health facilitators identified for people with learning disabilities by spring 2003.
 All people with a learning disability to be registered with a GP by June 2004.
 All people with a learning disability to have a Health Action Plan by June 2005.
7
st
Department of Health (2001) Valuing People: A new strategy for Learning Disability for the 21 Century
20
Learning disabilities in Salford: A Health Need Assessment 2011




The NHS to ensure that all mainstream hospital services are accessible to people
with learning disabilities.
Development of local specialist services for people with severe challenging
behaviour to be a priority for the capital element of the Learning Disability
Development Fund.
The Mental Health National Service Framework (NSF) to bring new benefits to
people with learning disabilities.
New role for specialist learning disability services, making most effective use of
their expertise.
A number of these actions were either not achieved or significantly delayed. The
Government published Valuing People Now8 in 2009 to further progress services for
people with learning disabilities. The strategy retained the principle that people with
learning disabilities are people first and re-emphasised the need for agencies to work
together to achieve the best outcomes for people with learning disabilities. The overall
policy objective in relation to better health was: ‘All people with learning disabilities get
the healthcare and support they need to live healthy lives.’ Outlined within Valuing
People Now are two key issues for the NHS:
 achieving full inclusion of people with learning disabilities in its mainstream work
on reducing health inequalities
 ensuring high-quality evidence-based specialist health services
The Disability Discrimination Act9 protects people with disabilities from discrimination
and the Disability Equality Duty10 places a legal duty on all public services to promote
equality of opportunities for people with disabilities. Our health, Our care, Our say11
(2006) re-iterated the commitment in Valuing People that people with learning disabilities
should have access to regular, comprehensive health checks. It also made commitments
to introduce personal health budgets and close and replace NHS campuses with
ordinary housing and support by 2010.
The Operating Framework for the NHS has in recent years included specific
requirements for NHS commissioners and providers in relation to adults with learning
disabilities:
 The 2010/11 document12 requests that PCTs and providers are “mindful of the
learning from the independent inquiry by Sir Jonathan Michael into services for
people with a learning disability.”
 The 2009/10 framework13 highlights that PCTs should secure general health
services that make reasonable adjustments for people with learning disabilities,
and should ensure there are effective arrangements for communication and
partnership working between primary care and other healthcare providers to
improve the overall quality of health care for people with a learning disability.
 The document also introduces the Vital Signs indicators, split into three tiers in
support of national priorities. In Tier 3 of the ‘access to personalised and effective
care’ priority, there are three indicators that relate to learning disabilities (at this
tier, primary care trusts choose in consultation with local partners which to
Department of Health (2009) Valuing People Now: a new three-year strategy for people with learning disabilities’
Disability Discrimination Act (2005)
Disability Equality Duty (2006)
11
Department of Health (2006) Our Health, Our Care, Our say. A new direction for community services
12
Department of Health (2009) The NHS in England: The operating framework for 2010/11
13
Department of Health (2008) The NHS in England: The operating framework for 2009/10
8
9
10
21
Learning disabilities in Salford: A Health Need Assessment 2011

prioritise locally):
- proportion of adults with learning disabilities in settled
accommodation
- proportion of adults with learning disabilities in employment
- take up of health checks
The 2008/09 document14 highlighted the following areas for local action in
relation to adults with learning disabilities:
- develop action plans locally to address shortcomings identified in
the Healthcare Commission audit
- identify local priorities for implementation of Valuing People Now,
focusing on making progress on campus closures, developing and
implementing plans with individuals on their care and health
needs, and preparing for transfer of learning disability funding to
local authorities
High Quality Care for All15 (2008) is the final report of the NHS Next Stage Review. It
outlines the vision for the future of health and healthcare to improve health and to
provide high quality care for all. Although learning disabilities was not one of the eight
core “pathways of care” identified nationally, some regions included learning disabilities
as an additional pathway.
Following the recent change in government no explicit policy statement regarding LD has
been made. Furthermore, there is no reference to LD in the new government’s White
Paper on the NHS; Equity & Excellence: Liberating the NHS (2010). However, the
health inequalities experienced by people with LD are acknowledged within the Public
Health White Paper; Healthy Lives, Healthy People (2010).
3.2.1 SUPPORTING GUIDANCE
World class commissioning for the health and wellbeing of people with learning
disabilities16(2009) is a practical guide to support commissioners to meet the needs of
this group, and ensure they are fulfilling their duty to promote equality. The report
recommends the following key areas of world class commissioning for the health and
wellbeing of people with learning disabilities:
 A comprehensive needs assessment which seeks evidence on the numbers,
health needs and experiences of people with learning disabilities.
 PCT board members exercising their Disability Equality Duty by asking tough
questions about how commissioned services are meeting the needs of people
with learning disabilities.
 Learning Disability Partnership Boards reviewing services and outcomes and
helping develop ambitious public commitments to what is to be achieved in the
next five years.
 Building capability so that all those involved in commissioning general health
services understand and act on the needs of people with learning disabilities.
 Working with service users, families and carers to develop and publish preferred
service models.
 Bringing providers into the market as necessary to achieve the desired service
models and outcomes.
14
Department of Health (2007) The NHS in England: The operating framework for 2008/09
Department of Health (2008) High Quality Care for All. NHS Next Stage Review Final Report
16
Department of Health (2009) World class commissioning for the health and wellbeing of people with learning disabilities
15
22
Learning disabilities in Salford: A Health Need Assessment 2011




Mainstream services demonstrating ‘reasonable adjustments’ to ensure that they
are meeting known needs, and having staff who understand how to make these
adjustments.
Adjustments will be at both individual and service and strategic level depending
on the nature of the change required.
Working with service users to make sure that provider organisations are
consistently delivering high-quality services.
Learning Disability Partnership Boards continuously reviewing how to support
individuals in improving their own health and wellbeing.
Equal access?17(2009) is a guide to support the NHS to include people with learning
disabilities in their equality schemes, with practical examples of reasonable adjustments
to achieve equality of access. Green Light18 (2006) is a toolkit to improve mental health
services for people with learning disabilities, providing guidance on what a good service
looks like and allowing local areas to assess how good their services are.
3.2.2 NATIONAL REPORTS
A life like no other: A national audit of specialist inpatient healthcare services for
people with learning difficulties in England19 was undertaken by the Healthcare
Commission in 2007. The main findings from the audit were:
 procedures for the safeguarding of vulnerable adults were poor,
 poor planning of care for people with learning disabilities,
 arrangements for the training of staff were often poor,
 a lack of internal and external scrutiny, with limited evidence of engagement by
commissioners,
 poor provision of stimulating activities and opportunities,
 services were often old-fashioned and institutional,
 evidence of lack of leadership.
A subsequent audit in 2008/0920 demonstrated that progress had been made, but further
recommendations were made as detailed in Box 3.1 (on page 25).
Death by Indifference21 (2007), provided details which Mencap believed demonstrated
institutional discrimination within the NHS towards six people with learning disabilities;
leading to shortcomings in care and ultimately to their deaths. The factors identified that
they believed contributed towards institutional discrimination include:
 people with a learning disability are seen to be a low priority.
 many healthcare professionals do not understand much about learning disability.
 many healthcare professionals do not properly consult and involve the families
and carers of people with a learning disability.
 many healthcare professionals do not understand the law around capacity and
consent to treatment.
 health professionals rely inappropriately on their estimates of a person’s quality
17
Department of Health (2009) Equal access? A practical guide for the NHS: creating a Single Equality Scheme that
includes improving access for people with learning disabilities
18
Foundation for People with Learning Disabilities (2006) Green Light: How good are your mental health services for
people with learning disabilities. A service improvement toolkit
19
Health Care Commission (2007) A life like no other: A national audit of specialist inpatient healthcare services for
people with learning difficulties in England
20
Care Quality Commission (2009) Specialist inpatient learning disability services. Follow up audit of services 2008/09
21
Mencap (2007) Death by Indifference
23
Learning disabilities in Salford: A Health Need Assessment 2011

of life
the complaints system within NHS services is often ineffectual, time-consuming
and inaccessible
Box 3.1 Recommendations for specialist in-patient learning disability services

Boards and senior management teams in the NHS and independent health care
ensure that they have the evidence and reporting mechanisms to show that their
learning disability services are meeting essential common standards.

Each board should consider nominating a non-executive ‘champion’ for learning
disability.

Commissioning needs to have a local focus and develop the competence and
capacity to deliver high quality services and support for local people.

Independent healthcare providers and NHS trusts should be able to justify the care,
treatment and assessment they provide, ensuring it meets with national guidance
and best practice.

Learning Disability Partnership Boards should work with people with learning
disabilities and family carers to empower and support them to speak up and be
directly involved in peer audits with health organisations.
Source: Care Quality Commission
Following the publication of Death by Indifference, the Government agreed to hold an
independent inquiry into the six cases Mencap had highlighted. Healthcare for All22
(2008), the report of the Independent Inquiry chaired by Sir Jonathon Michael, concluded
that people with learning disabilities appear to receive less effective care than they are
entitled to receive, with evidence of a significant level of avoidable suffering and a high
likelihood that there are deaths occurring which could be avoided. A total of ten
recommendations were made, summarised as follows:
 Undergraduate and postgraduate clinical training must include competencebased, mandatory training in learning disabilities, involving people with learning
disabilities and their carers.
 All health care organisations should ensure that they collect the data and
information necessary to allow people with learning disability to be identified and
their pathways of care tracked.
 Family and other carers should be routinely involved as partners in the provision
of treatment and care, and Trust Boards should ensure that reasonable
adjustments are made to enable and support carers to do this effectively.
 PCTs should identify and assess the needs of people with learning disabilities
and their carers as part of their Joint Strategic Needs Assessment, consulting
with their Local Strategic Partnership, their Learning Disability Partnership
Boards and relevant voluntary user-led learning disability organisations, and
using the information to inform the development of Local Area Agreements.
22
Michael, J (2008) Healthcare for All: Report of the independent inquiry into to access to healthcare for people with
learning disabilities
24
Learning disabilities in Salford: A Health Need Assessment 2011






The Department of Health should establish a learning disabilities Public Health
Observatory, which should be supplemented by a time-limited Confidential
Inquiry into premature deaths in people with learning disabilities to provide
evidence for clinical and professional staff of the extent of the problem and
guidance on prevention.
The Department of Health should immediately amend Core Standards for Better
Health, to include an explicit reference to the requirement to make ‘reasonable
adjustments’ to the provision and delivery of services for vulnerable groups.
Inspectors and regulators of the health service should develop and extend their
monitoring of the standard of general health services provided for people with
learning disabilities, in both hospital and community settings.
The Department of Health should direct PCTs to commission enhanced primary
care services which include regular health checks provided by GP practices and
improve data, communication and cross-boundary partnership working.
All Trust Boards should ensure that the views and interests of people with
learning disabilities and their carers are included in the planning and
development of services, and in decisions affecting the operation of services.
All Trust Boards should demonstrate in routine public reports that they have
effective systems in place to deliver effective, ‘reasonably adjusted’ health
services, including arrangements to provide advocacy for all those who need it,
and arrangements to secure effective representation on PALS from all client
groups including people with learning disabilities.
Valuing People Now (2009) included the response of the Department of Health to the
recommendations made in Healthcare for All. All 10 recommendations were accepted by
the Department of Health; with assurance given that Chief Executives of all NHS trusts
are to make sure that reasonable adjustments in the care of people with learning
disabilities are being made. Six Lives23 (2009) is the report of the Health Ombudsmen
into the cases highlighted in Death by Indifference. The report illustrated some significant
and distressing failures in services across both health and social care, leading to
situations in which people with learning disabilities experienced prolonged suffering and
inappropriate care. In some of the cases the Health Ombudsmen concluded that there
had been maladministration and service failure for disability-related reasons. The Health
Ombudsmen also found in some cases that the public bodies concerned had failed to
live up to human rights principles, especially those of dignity and equality. The
Ombudsman endorsed the recommendations outlined in Healthcare for All, but also
recommended that: “All NHS and social care organisations in England should urgently
review:
 The effectiveness of the systems they have in place to enable them to
understand and plan to meet the full range of needs of people with learning
disabilities in their areas; and
 The capacity and capability of the services they provide and/or commission for
their local populations to meet the additional and often complex needs of people
with learning disabilities and;
 should report accordingly to those responsible for the governance of those
organisations within 12 months of the publication of this report.”
23
Parliamentary and Health Service Ombudsman (2009) Six lives: the provision of public services to people with learning
disabilities
25
Learning disabilities in Salford: A Health Need Assessment 2011
In 2010 the Department of Health published a progress report24 which detailed how NHS
and social care organisations were responding to the Six Lives report. The progress
report concluded that much progress had been achieved however improvement was
variable across the country. Furthermore, the report also identified that systemic change
was not yet evident. A number of ongoing concerns were also identified including:
 Issues relating to capacity and consent
 Staff awareness and reasonable adjustments
 Complaints and advocacy.
The report acknowledged that where progress had been achieved the following were
significantly important:
 Organisational leadership,
 The annual health checks,
 The involvement of service users and carers in service delivery and planning,
 Health facilitators and or acute liaison nurses,
 The implementation of reasonable adjustments e.g. longer appointment times,
more easy read materials.
As well as those listed above, a number of other reports have highlighted health
inequalities experienced by people with learning disabilities in the UK. These reports
include:
 Equal Treatment: Closing the Gap25 (2006) was the report of the Disability
Rights Commission’s formal investigation into physical health inequalities
experienced by people with learning disabilities and/or mental health problems.
 The Mansell Report: Services for People with Learning Disabilities and
Challenging Behaviour or Mental Health Needs26 (2007) provided updated
guidance, including recommendations, for councils and health bodies on the
development of services for adults with LD whose behaviour or mental health
problems present a challenge for services. The report recognised the cost
efficiency of this approach as well as the improved experience of service users
and the reduced burden upon carers.
 A life like any other: Human Rights of Adults with Learning Disabilities27
(2008), was a report published by the Joint Committee on Human Rights which
recommended that stronger leadership is imperative to create a more positive
culture of respect for human rights in the UK, together with the need for practical
steps to be taken to promote the rights of adults with learning difficulties in
mainstream public services.
 House of Commons Health Select Committee’s Report into Health
Inequalities28(2009) reported that people with learning disabilities have worse
health than the rest of the population (paragraph 49) and worse access to high
quality health services (paragraph 219).
24
Department of Health (2010) Six Lives, Progress Report. October 2010.
Disability Rights Commission (2006) Equal Treatment: Closing the Gap. A formal investigation into physical health
inequalities experienced by people with learning disabilities and/or mental health problems.
26
Department of Health (2007) Services for People with Learning Disabilities and Challenging Behaviour or Mental Health
Needs.
27
Joint Committee on Human Rights (2008) A life like any other: Human Rights of Adults with Learning Disabilities
28
House of Commons Health Committee (2009) Health Inequalities. Third Report of Session 2008-09
25
26
Learning disabilities in Salford: A Health Need Assessment 2011
 The Bradley Report: a review of people with mental health problems or
learning disabilities in the criminal justice system29 (2009) identified that too
many people pass through the criminal justice system without their learning
disabilities being recognised, or their specific needs met, leading to a cycle of
offending.
 Raising our sights: services for adults with profound intellectual and
multiple disabilities30 (2010) was commissioned as part of the Valuing People
Now delivery plan and highlighted the most important parts of planning and
delivery of support for people with the most complex needs. The report includes
examples of good practice in provision of services, but also highlights that the
major obstacles to wider implementation of policy for adults with profound
intellectual and multiple disabilities are prejudice, discrimination and low
expectations. The report makes 33 recommendations for national government and
local health and social care organisations. The government’s response31 to the
report was published in February 2011 and outlined a number of
recommendations and responses, many of which will be addressed in the
forthcoming Green Paper on Special Educational Needs and Disabilities. The
response places an emphasis on local NHS bodies, Local Authorities and LD
services to fulfill the recommendations included within Raising our sights.
3.3 NHS CONSTITUTION
The NHS Constitution32, first published in 2009, captures the purpose, principles and
values of the NHS, as well as bringing together a number of rights, pledges and
responsibilities for staff and patients alike. The first principle of the Constitution states
that “the NHS provides a comprehensive service, available to all irrespective of gender,
race, disability, age, sexual orientation, religion or belief. It has a duty to each and every
individual that it services and must respect their human rights. At the same time, it has a
wider social duty to promote equality through the services it provides and to pay
particular attention to groups or sections of society where improvements in health and
life expectancy are not keeping pace with the rest of the population.”
3.4 THE LESGISLATIVE FRAMEWORK
Health care should be delivered in accordance with the legal framework. The framework
is wide-ranging, but at the most fundamental level starts with the Human Rights Act
(HRA), 1998. The Joint Committee on Human Rights (JCHR) concludes that it is still
necessary to point out that adults with learning disability have the same rights as
everyone else. Their report (March 2008) states that rights to humanity, dignity, equality,
respect and autonomy are not being met. The JCHR report argues that the experiences
of people with learning disabilities mirror closely those of older people and, in so doing,
fall far short of good practice.
29
Bradley, K. (2009) The Bradley Report: a review of people with mental health problems or learning disabilities in the
criminal justice system
30
Mansell, J. (2010) Raising our sights: services for adults with profound intellectual and multiple disabilities Tizard Centre,
University of Kent
31
Department of Health (2011) Government Response to Raising our Sights: Services for adults with profound intellectual
& multiple disabilities – A report by Professor Jim Mansell.
32
Department of Health (2009) The NHS Constitution: the NHS belongs to us all
27
Learning disabilities in Salford: A Health Need Assessment 2011
Other legislation governing public bodies, such as the Disability Discrimination Act and
the Mental Capacity Act also has a direct bearing on care for people with learning
disabilities in the NHS.
3.4.1 The Disability and Discrimination Act (DDA)
The DDA (2005) defines a disabled person as, ‘a person with a physical or mental
impairment that has a substantial and long-term adverse effect on his ability to carry out
normal day-to-day activities’. The Act suggests that for compliance with this definition,
the individual should meet the following criteria:
 have an impairment that is either physical or mental;
 the impairment must have adverse effects that are substantial;
 the substantial adverse effects must be long-term;
 the long-term substantial adverse effects must be effects on normal day-to-day
activities
The Disability Rights Commission raised several issues with this definition:
 the definition can lead to unfair and unequal outcomes for people who face
disability discrimination and make it difficult for employers and others with
responsibilities under the act to understand and comply with their duties;
 the definition can result in uncertainty;
 no protection for those with short-term, but severe conditions or those with longterm conditions, which do not have substantial adverse impacts on day-to-day
activities.
3.4.2 Human Rights Act 1998
This includes the monitoring of compliance by the Commission for Equality and Human
Rights.
3.4.3 Mental Capacity Act 2005
The MCA was fully implemented in October 2007. It introduced a new criminal offence
of ill treatment or neglect of a person lacking capacity and it enabled people to create
lasting powers of attorney. It put into statute the principle that everything must be done
in the best interests of the patient.
The Act states that a person must be assumed to have capacity to make a decision
regarding his or her care or treatment unless proved otherwise. The aim is to protect
people with learning disabilities and other conditions associated with cognitive
impairment, by providing guidelines for carers and professionals about who can take
decisions in which situations. The Act requires ‘all practicable steps’ to present
information in a way that is appropriate to the person’s circumstances.
3.4.4 The Carers Act
The Carers (Recognition and Services) Act 1995 gives people who provide ‘substantial
care on a regular basis’ the right to request an assessment of their needs from social
services.
28
Learning disabilities in Salford: A Health Need Assessment 2011
3.5
REGIONAL CONTEXT
3.5.1 Regional strategy and governance
Regional delivery of the national Valuing People Now Strategy is discharged via the
North West Valuing People Now Programme Board. The regional board brings
together key stakeholders regionally, including representatives from the Strategic Health
Authority, the Regional Forum (of people with learning difficulties) and the Regional
Family Carer Network. Regional Valuing People Now Programme Leads and Deputy
Regional Directors of Social Care and Partnerships are also members of the board. The
aim of the Board is to ensure that people with LD are included in plans and services for
the North West whilst acting as the conduit between national strategy and local delivery.
The Programme Board has identified the following 3 key priorities for 2010/2011; better
health, employment, and housing. The Board is also concerned with the personalisation
agenda; integration between adult and children’s services to improve transition, strong
and effective leadership and local partnership boards, and friends and relationships.
Responsibility for delivery of annually agreed priorities is achieved via the Board’s
underpinning network forums.
3.5.2 Learning Disabilities 2010 Health Self Assessment
The annual Health Self Assessment, and associated Framework, is being implemented
nationally as part of Valuing People Now strategy to facilitate greater understanding of
health needs and experiences of people with LD. The self assessment covers a range of
areas in order to:
 Provide assurance that PCT’s recognise the needs of its population with learning
disabilities.
 Evidence that the PCT’s statutory responsibilities, in relation to people with a
learning disability, are being carried out.
 Evidence of involvement, in service development and delivery, by people with
learning disability, advocacy groups and family carers.
 Evidence of PCT partnership working with their Learning Disability Partnership
Board.
 Evidence of effective communication, relating to Learning Disability, within the
PCT.
 Evidence of the PCT’s partnership with NHS Trusts, Local Authority, and as
necessary the independent sector.
 Evidence that information and feedback from the Health Self Assessment and
performance Framework will be used to inform NHS commissioning plans and
contracts.
The PCT submitted its response in winter 2010. Feedback to PCT Chief Executives on
the self assessment including benchmarked performance against other areas is due to
be received imminently.
3.6 LOCAL CONTEXT
3.6.1 Joint Strategic Needs Assessments
Since April 2008, NHS Primary Care Trusts and top-tier Local Authorities have had a
statutory duty to produce a Joint Strategic Needs Assessment (JSNA). JSNA is a
process that identifies the current and future health and wellbeing needs for the local
population. The JSNA should inform the priorities and targets set by Local Area
29
Learning disabilities in Salford: A Health Need Assessment 2011
Agreements and lead to agreed commissioning priorities that will improve outcomes and
reduce health inequalities. There is some, but limited, reference to adults with learning
difficulties within the existing Salford JSNA.
3.6.2 Commissioning strategies
The NHS Salford 5 year Strategic Plan 2009 – 2014 ‘adding life to years and years to
life IN Salford’ outlines how the organisation vision will be achieved through the
implementation of a number of strategic goals.
There is no specific reference to adults with learning disabilities within the strategy, apart
from citation to the joint commissioning arrangements between NHS Salford and Salford
City Council via the Learning Difficulties Partnership Board. However, reducing health
inequalities and increasing life expectancy are the bedrock principles of the strategy.
Adopting a broad population approach, the strategy concentrates on using intelligence to
inform commissioning and health improvement; utilising neighbourhood social capital
and tackling the social determinants of health.
3.6.3 LD Strategy
Whilst there is no specific local health strategy, the LD Partnership Board (see 5.8.1) has
an overarching commissioning strategy (Our Future Actions not Words 2006 – 2011)
and business plan through which the local implementation of Valuing People Now is
delivered. The business plan is produced by the partnership board and renewed on a 6
month basis. Delivery of the business plan is actioned via the Partnership Board’s 13
Sub Groups.
3.7
RESEARCH EVIDENCE
Epidemiological research on the health of people with learning disabilities is limited due
to definition of cases, difficulties in diagnosis, and small sample sizes. There are also
significant gaps in the research evidence looking at the effectiveness of health services
for people with learning disabilities. Assessing the effectiveness of health services and
interventions for people with learning disability is complex because of 33:
 Definitional problems and the varied case-mix within services.
 The complexity of client problems and multi-agency /multi-intervention approaches
to their management.
 The inappropriateness of extrapolating knowledge about effectiveness from nonlearning disabled populations to people with learning disabilities.
 Communication difficulties hampering client satisfaction, reliance on the views of
third parties and that historically people with learning disabilities have not been
encouraged to state their views.
 Difficulties in obtaining informed consent to participate in studies.
Information on evidence based practice is therefore limited. A summary of the most
recent research evidence for key health conditions relating to the LD population is
included in Appendix 1.
33
Lindsay, M. (2002) Comprehensive health care services for people with learning disabilities Advances in Psychiatric
Treatment 8: 138-148
30
Learning disabilities in Salford: A Health Need Assessment 2011
3.8
PERFORMANCE MONITORING & QUALITY
The Care Quality Commission (CQC) published its Strategic plan 2010-2015: position
statement and action plan for learning disability34 in 2009. In the document, CQC
identified three key areas for improvement over the next five years:
 Ensuring that the care of people with learning disabilities becomes more personcentred, including a greater focus on person-centred care plans.
 Ensuring that people with learning disabilities receive care that is safe.
 Improving the commissioning of services for people with learning disabilities.
Box 3.2 CQC Assessment Questions

Does the trust have a mechanism in place to identify and flag patients with
learning disabilities and protocols that ensure that pathways of care are
reasonably adjusted to meet the health needs of these patients?

In accordance with the Disability Equality Duty of the Disability Discrimination Act
(2005) does the trust provide readily available and comprehensive information
(jointly designed and agreed with people with learning disabilities, representative
local bodies and/or local advocacy organisations) to patients with learning
disabilities about the following criteria:
-Treatment options (including health promotion)?
- Complaints procedures?
- Appointments?
Does the trust have protocols in place to provide suitable support for family carers
who support patients with learning disabilities, including the provision of
information regarding learning disabilities, relevant legislation and carers’ rights?


Does the trust have protocols in place to routinely include training on learning
disability awareness, relevant legislation, human rights, communication
techniques for working with people with learning disabilities and person centred
approaches in their staff development of health services?

Does the trust have protocols in place to encourage representation of people with
learning disabilities and their family carers within Trust Boards, local groups and
other relevant forums, which seek to incorporate their views and interest in the
planning and development of health services?

Does the trust have protocols in place to regularly audit its practices for patients
with learning disabilities and to demonstrate the finding in routine public reports?
Source: Care Quality Commission
At the same time, the Care Quality Commission published an indicator on ‘Access to
healthcare for people with learning disability’ for acute and specialist trusts. This
indicator seeks to respond to the recommendations made in Healthcare for All
specifically around the collection of data and information necessary to allow people with
a learning disability to be identified, and the arrangements trusts have in place to ensure
the views and interests of people with learning disabilities and their carers are included
34
Care Quality Commission (2009) Strategic plan 2010-2015: position statement and action plan for learning disability
31
Learning disabilities in Salford: A Health Need Assessment 2011
in the planning and development of services. This indicator will not be included in the
scored assessment for 2009/10. Trusts will however be expected to collect the requisite
information and report on it separately. They will be assessed on their responses to six
questions given in Box 3.2.
The Comprehensive Area Assessment (CAA) is a new national framework to assess
the effectiveness of public services in working together to deliver the outcomes that will
improve the quality of life, health and wellbeing for local people. Public services will be
assessed by six partner inspectorates for their accountability, responsiveness, quality,
impact, use of public money and prospects for delivering sustainable improvement. The
CAA will include performance against the National Indicator Set (NIS); the relevant
indicators in the NIS are:
 NI145: adults with learning disabilities in settled accommodation
 NI146: adults with learning disabilities in employment
Local Area Agreements (LAAs) set out the priorities for a local area agreed between
central government and a local area. Reflecting the limited reference to adults with LD in
the JSNA; there are no specific targets for LD included within the Salford LAA. The LAA
does however cease as a joint and locally agreed performance framework in March 2010
and is to be replaced by a set of agreed priorities determined by the Local Strategic
Partnership. Improving the health of people with LD has already been identified as a
potential target priority.
In addition, the Commissioning for Quality and Innovation (CQUIN) payment
framework makes a proportion of providers’ income conditional on quality and
innovation. The 2010/11 CQUIN framework for Salford Royal includes the following
indicators:
 Annual patient experience survey (accessible version) to patients with LD.
 A Health Action Plan (HAP) to be offered/provided to all patients with LD upon
discharge and/or transfer of care.
 A 'Patient Passport' to be offered/provided to all in-patients with LD upon
admission.
 The LD Partnership Board has also identified the following additional CQUIN
indicators, although these are still to be negotiated, for SRFT for 2011/12:
 Identification of carers and their needs.
 Recording of the person's access needs (e.g. hoist, ramp, preferred
communication methods, longer appt time etc).
 Additional discharge checks to promote safe discharges.
Attempts have also been made to incorporate a number of the above CQUINS into the
Salford Community Health (SCH) contract to ensure that people with LD are identified by
staff; that their needs are met appropriately and that there is a clearer picture in relation
to local health need. To date however no commitment to the inclusion of these additional
CQUINS has be agreed with SCH.
3.9 GOVERNANCE & LEADERSHIP
Across the partnership there is long standing commitment to improving the health and
wellbeing of people with LD. This commitment is evident at both strategic and delivery
levels. Local governance and leadership is provided through the Learning Difficulties
Partnership Board. There are a number of other groups that these are either accountable
32
Learning disabilities in Salford: A Health Need Assessment 2011
to (but do not have a specific focus on learning disabilities) or that are sub-groups of the
above. The relationships between groups can be seen in Figure 3.
3.9.1
Learning Difficulty Partnership Board
Salford’s Learning Difficulties Partnership Board was established as a requirement of the
Valuing People White Paper to promote stronger local partnerships that improve the
services received by people with learning disabilities. The Board is the commissioning
body for adults with a learning disability for Salford City Council and NHS Salford.
Valuing People Now places even greater emphasis on the role of Partnership Boards in
ensuring local delivery of the strategy, stating that they are “central to the strategic
planning, commissioning, delivery and performance management of all services as they
relate to learning disability in local areas.” Within the strategy, Partnership Boards are
also formalised as part of a governance structure that allows for the reporting of local
data to the Regional Learning Disability Programme Boards.
The Salford Board has a structure with decision making members and supporters and
meets in public on a monthly basis. Decision making members include the following:
 Lead Councillor,
 Strategic Director (Salford City),
 Chief Executive NHS Salford,
 Vice Principal Salford College,
 Manager Supporting People,
 Chair MENCAP (Vice Chair)
 Lecturer Salford University,
 Non-Exec. Director NHS Salford,
 3 family carer representatives,
 3 user representatives,
 Representative of Salford Being Heard,
 Independent sector representative (Chair)
 Assistant Director Transition.
 Two co-opted members; one service user on regional task force one staff member.
The "non voting" members include:
 Head of the Joint Service,
 Assistant Director Finance,
 Director of Nursing,
 Nurse Manager Safeguarding (Salford Royal Trust)
The Joint Service supports the administration of the Board and Salford Being Heard
gives support to service user representatives. The Board is also supported by 13 Task
groups including:
 Autism,
 Fulfilling Lives(Days),
 Where People Live,
 Short Breaks,
 Getting Around,
 Valuing Diversity,
 Staying Healthy,
33
Learning disabilities in Salford: A Health Need Assessment 2011






Leisure,
Employment,
Transition,
Planning with People,
Listening to Carers (Carers Forum),
Listening to People
There are also an additional 4 Officer Groups overseeing the following:
 Complex Needs,
 Challenging Behaviour,
 Out of Area Project,
 Healthy Sexuality
A Development Worker (LD) funded from the Learning Disability Development Fund
(LDDF) support the Salford Being Heard, Listening to People Task Groups, User Forums
("Chatter Box") and runs "Speak Out" Courses for users. This facilitates input from adults
with LD into the partnership board
34
Appendix 1
Figure 3: Salford Learning Difficulty Service Governance (New Directions)
Partnership Board
Chair: Karen Knievton
Other Groups
 Direct Payments
 Workforce Development
 Challenging Behaviour Sub Group
 Disability Project Group
 Autism Development Group
 Leisure
Transition
Where
People
Live
Moving On
Panel
Individuals
Forum
Listening
to People
Community Team for People with
Learning difficulties
Lead: Alison Antrobus / Bernadette Enright
793 2286
Business Plan Action Team
Chair: Dave Clemmett
Supported Employment
Lead: Dave Clemmett : 793 2051
Listening
to People
(Carers)
Planning
with
People
Total
Communication
Staying
Healthy
Fulfilling
Lives
Development
Committees
Employ
ability
Employment
Support
Group
Gettting
Around
Short
Break
Support
Granville
Development
Committee
People
Supported
Forum
Valuing
Diversity
Appendix 1
4. INEQUALITIES IN HEALTH
MAIN MESSAGES

The life expectancy of people with LD has increased significantly in the last 50
years and overall health has improved.

There is however clear evidence that people with learning disability have poorer
health than the rest of the population and are more likely to die prematurely.

Nationally respiratory disease followed by cardiovascular disease are the leading
causes of death for people with LD. Local data indicates that Cancer and CVD
are the leading cause of death for people with LD in Salford, followed by disease
of the nervous system and respiratory disease.

Evidence suggests that epilepsy, gastro-oesophageal reflux disorder, sensory
impairments, osteoporosis, schizophrenia, dementia, dysphagia, dental disease,
musculoskeletal problems, accidents and nutritional problems are all commonly
experienced by adults with LD.

In Salford rates of epilepsy and musculo-skeletal conditions are particularly high.
However these assumptions are based on limited and incomplete data therefore
other conditions may be also be important.
4.1
MORTALITY
The life expectancy of people with LD is increasing. In the 1930s average life expectancy
was estimated to be less than 20 years of age35. Today, mean life expectancy is now
estimated to be 74, 67 and 58 for those with mild, moderate and severe learning
disabilities respectively36.
However people with learning difficulties have a shorter life expectancy and increased
risk of premature death when compared to the rest of the population (66 versus 80). The
risk of dying before the age of 50 has been found to be 58 times greater than in the
general population37 and all cause mortality rates among people with moderate to severe
learning difficulties are three times higher than in the general population, with mortality
being particularly high for young adults, women and people with Down’s Syndrome.
Life expectancy is shortest for those with the greatest support needs and the most
complex and/or multiple conditions. Therefore, life expectancy diminishes with the
severity of impairment. Early death is significantly associated with cerebral palsy,
incontinence, problems with mobility and residence in hospital. Whilst the increased
35
Holland, T (2008) Mental Capital & Wellbeing: Making the most of ourselves in the 21 st century. The Government Office
for Science, Foresight Mental Capital & Wellbeing Project. London.
36
Bittles, A. M et al (2002) The influence of intellectual disability on life expectancy. The Journal od Gerotology Series A:
Biological Sciences & Medical Sciences; 57 (7): M470 – 72.
37
Hollins, S, Attard, M.T, von Fraunhofer, N & Sedgwick, P (1998) Mortality in people with learning disability: risks, causes
and death certification findings in London. Developmental Medicine & Child Neurology, 40: pp.50 – 56.
Learning disabilities in Salford: A Health Need Assessment 2011
mortality rate is partly associated with learning disability (for example, almost half of all
people with Down’s syndrome) a number of factors contribute to these higher mortality
rates. The specific causes of differences in morbidity and mortality can be difficult to
disentangle however access to treatment, failure to fully investigate physical health
problems; delay or absent identification of infections or other health problems are also
contributory factors. Research has identified that preventable deaths are four times
higher for people with LD as opposed to the general population.
For the non LD population, the leading cause of death in the UK is cancer, followed by
heart disease, then cerebrovascular disease. For people with learning disabilities,
respiratory disease (related to pneumonia and aspiration)38 39 40 followed by
cardiovascular disease (related to congenital heart disease rather than ischaemia) are
the leading causes of death37.
In order to improve the health, quality of life and life expectancy of people with LD in
Salford it is important to understand what causes people with LD in Salford to die, and in
particular, why they die earlier than the non LD population. Currently, death certificates
do not record if the deceased individual had a learning difficulty therefore there is no
routinely available data, neither at a national or local level, regarding the causes of death
for people with a LD. However in order to provide some indication of local mortality and
to inform this HNA mortality files for deceased LD clients, who were registered with
Salford City Council and died between 2006 – 2010, were analysed.41.
This analysis revealed that the annual number of deaths between 2006 and 2010
remained relatively consistent with an average of 18 deaths per year. 49% of deaths
occurred in those aged 35 – 64 years, 26% amongst those aged 65 – 74 years, 20% in
those aged >75 years and just 6% in those aged 15 – 34 years (see Graph 6, on page
40). This age distribution is consistent with life expectancy outcomes for people with a
moderate (67 years) or severe (58 years) learning disability.
The data, illustrated in Graph 7 (on page 40), indicates that amongst SCC LD clients the
leading cause of death was cancer and/or circulatory disease (14 cases each); followed
by deaths due to diseases of the nervous system and/or respiratory disease (11 cases
each). This conflicts with national LD mortality data and instead reflects the causes of
death for the general, and Salford non LD population. Only 9 deaths were attributed to
having a learning difficulty.
38
Carter, G. and Jancar, J. (1983) Mortality in the mentally handicapped: a 50 year survey of the Stoke park group of
hospitals (1930-1980) Journal of Mental Deficiency Research 27: 143-156.
39
Puri, B. et al (1995) Mortality in a hospitalized mentally handicapped population: a 10 year-survey Journal of Intellectual
Disability Research 39: 442-446
40
Hollins, S. et al (1998) Mortality in people with learning disability: risks, causes and death certification findings in London
Developmental Medicine and Child Neurology 40: 50-56
41
A total of 90 clients were recorded to have died during the 4 year period under review. There was no information
regarding the cause of death for 9 clients. All data was password protected, following information governance, to ensure
patient confidentiality.
37
Learning disabilities in Salford: A Health Need Assessment 2011
Graph 6: LD deaths in Salford by Year and Age Group 2006 - 2010
Deaths by Year & Age Group 2006 - 2010
12
10
8
6
4
2
0
2006
2007
2008
2009
2010
Year
15 - 34 years
35 - 64 years
65 - 74 years
75+
Source: SCC registered LD clients (Carefirst records)
Graph 7: LD deaths in Salford by cause (ICD10: see Appendix 2 for ICD10 Definitions) 2006
- 2010
Deaths by ICD10 Code
16
14
14
14
12
11
11
10
Number
9
9
8
6
5
4
4
4
2
2
2
2
1
1
0
0
0
0
0
0
0
0
0
1
0
0
Z
Y
X
V
W
T
S
R
Q
P
O
N
L
M
K
I
J
H
F
G
E
D
C
B
A
U
nk
no
w
n
0
ICD10 Code
Source: SCC registered LD clients (Carefirst records)
Analysis of the data by age group (see Table 1 and Graph 8: see page 41) however
reveals that the causes of death vary with age.
38
Learning disabilities in Salford: A Health Need Assessment 2011
Table 1: Leading Causes of Death by Age Group 2006 - 2010
Age Group
Leading Causes of Death
15 – 34 years
1. Disease of the nervous system (3 cases)
2. LD related (1 case)
35 – 64 years
1. Circulatory disease (7 cases) and LD related (7 cases)
3. Respiratory disease
65 – 74 years
1. Cancer (6 cases)
2. Respiratory disease (4 cases)
3. GU system disease (3 cases)
>75 Years
1. Cancer (5 cases) and circulatory disease (5 cases)
3. Disease of the nervous system (2 cases) and respiratory disease (2
cases)
For example, the causes of death amongst clients under 64 is consistent with the
national LD mortality data and are more likely to be related to having a learning disability.
It is probable that amongst this group people are likely to have a more profound learning
difficulty and consequently poorest health outcomes; hence the high levels of recorded
LD related deaths. Conversely the causes of death amongst those aged over 65 years
reflect mortality data for the non LD population. The longer life expectancy and causes of
death observed in these clients may indicate that they had a more moderate LD. This
supports the theory that the severity of the LD impacts on health outcomes and life
expectancy and demonstrates the importance of understanding the segmentation of the
LD population. This also indicates the need for a targeted approach towards efforts to
improve health outcomes, focusing separately on the leading causes of death for those
with severe and profound learning difficulties and those for older people with LD.
Graph 8: Causes of Death by Age Group 2006 - 2010
Deaths by Age Group & ICD10 Code
8
7
7
7
6
6
6
5
5
5
5
4
4
4
3
3
3
3
3
2
2
2
2 2 2
2
2
2
1
1
1
11
11
1
1
1
1
1
1
1
0
15 - 34 years
35 - 64 years
65 - 74 years
75+
Age Group
Unknown
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
R
S
T
V
W
X
Y
Z
Source: SCC registered LD clients (Carefirst records)
39
Learning disabilities in Salford: A Health Need Assessment 2011
It is however important to acknowledge that whilst this information provides some
indication of local mortality it does not provide a comprehensive picture of the whole LD
population. Only records for people with LD and registered as clients of SCC were used;
consequently it is inevitable that these clients would have a moderate or severe LD
therefore excluding individuals with a mild LD and or those not registered with SCC.
The ongoing collection and analysis of local mortality data is crucial to facilitate effective
prioritisation and planning. Furthermore, given the evidence that the causes of death
vary by age and severity of the learning disability it is important that this data is
interrogated to ensure that needs are adequately identified and appropriately and
effectively targeted according to age and severity.
4.2
MORBIDITY
People with learning disabilities are two and a half times more likely to have health
problems than other people42. Furthermore, one in seven adults with learning disabilities
evaluate their general health as not good43. Despite this evidence however people with
learning disabilities have higher levels of unmet need and receive less effective
treatment44 45 25. There are a number of conditions which are understood to more
adversely affect the LD population. Condition specific information is outlined below.
4.2.1 Respiratory disease
Respiratory disease, linked to pneumonia, swallowing and eating problems and gastrooesophageal reflux disorders, is the leading cause of death for people with learning
disabilities46 47 48 and is much higher than for the non LD population.
According to data taken from NHS Salford LD Health Checks 10.5% of those who had a
health check were recorded as asthmatic; whilst 1.5% were recorded as having Chronic
Obstructive Pulmonary Disease (COPD). 4.8% (44) of those who had a health check
reported swallowing difficulties.
4.2.2 Coronary heart disease (CHD & CVD)
CHD is the second most common cause of death amongst people with learning
disabilities37 in the UK with rates increasing due to increased longevity and lifestyle
changes associated with community living38 49 50 51. In Salford CVD is the leading cause
of death alongside cancer.
42
Disability Rights Commission (2006) Equal Treatment - Closing the Gap. London. Disability Rights Commission.
Emerson E & Hatton C (2008) Socioeconomic disadvantage, social participation and networks and the self-rated health
of English men and women with mild and moderate intellectual disabilities: Cross sectional survey. European Journal of
Public Health;18:31-37.
44
Mencap (2007) Death by Indifference. London.
45
Michael J (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with
Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities.
46
Hollins S, Attard M, van Fraunhofer N, McGuigan SM, Sedgwick P. Mortality in people with learning disability: risks
causes, and death certification findings in London. Developmental Medicine and Child Neurology 1998;40:50-56.
47
Carter G & Jancar J (1983) Mortality in the mentally handicapped: a 50 year survey at the Stoke Park group of hospitals
(1930-1980). Journal of Mental Deficiency Research, 27, 143-156
48
Puri B K, Lekh S K, Langa A, Zaman R, Singh I (1995) Mortality in a hospitalized mentally handicapped population: a
10-year survey. Journal of Intellectual Disability Research, 39, 442-446
49
Wells MB, Turner S, Martin DM, Roy A. Health gain through screening - coronary heart disease and stroke: developing
primary health care services for people with intellectual disability. Journal of Intellectual & Developmental Disability
1995;22:251-63.
50
Turner S, Moss S (1996) The health needs of adults with learning disabilities and the Health of the Nation strategy.
Journal of Intellectual Disability Research, 40, 438-450
43
40
Learning disabilities in Salford: A Health Need Assessment 2011
Congenital heart disease and its sequelae are common in some groups of people with
learning disabilities. Almost half of all people with Down’s syndrome are affected by
congenital heart defects 52 53.
Data from Salford GP registers indicates that of those registered as having a LD, who
have had a health check, 2.4%(22) have IHD and 1% (10) have had a stroke. These
rates may however be significantly higher for those with mild LD. Furthermore, it is
anticipated that local rates of CVD will increase across the LD population as people
increasingly age as a result of improved life expectancy. Moreover, the changes in living
arrangements for adults with LD correspond with changes in lifestyle. Poor diet, inactivity
and substance use are all associated with CVD therefore maintaining and supporting a
healthy lifestyle will become increasingly important.
4.2.3 Cancer
Local data indicates that cancer is the leading cause of death in Salford amongst people
with a LD, alongside CVD. However, UK estimates suggest that the overall incidence of
deaths from cancer among people with learning disabilities is lower than the non LD
population (12%-18% versus 26%), although people with learning disabilities have
proportionally higher rates of gastrointestinal cancer than the general population (48%59% versus 25% of cancer deaths)54 55 56, reportedly linked to the higher prevalence of,
for example, gallstones and oesophageal reflux.
Unlike the non LD population many people with learning disabilities are less likely to be
given a cancer diagnosis, accompanied with a lack of information, preventing them from
participating in important treatment decisions. People with learning disabilities with
cancer are also less likely to be informed of their diagnosis and prognosis; given pain
relief; and less likely to receive palliative care57 58.
The incidence and pattern of cancer amongst people with learning disabilities is rapidly
changing due, in part, to increased longevity and the lifestyle associated with
independent living. Like CHD therefore, the incidence of cancer is expected to increase
as the population ages and is more independent. Indeed there is already evidence of this
in the Salford LD population with cancer more prevalent amongst older people (>65
years) with LD.
51
Wells M B, Turner S, Martin D M, Roy A (1995) Health gain through screening - coronary heart disease and stroke:
developing primary health care services for people with intellectual disability. Journal of Intellectual & Developmental
Disability, 22, 251-263
52
Hermon C, Alberman E, Beral V, Swerdlow AJ. Mortality and cancer incidence in persons with Down’s syndrome, their
parents and siblings. Annals of Human Genetics 2001;65:167-76.
53
Brookes ME, Alberman E. Early mortality and morbidity in children with Down’s syndrome diagnosed in two regional
health authorities in 1988. Journal of Medical Screening 1996;3:7-11.
54
Jancar J. (1990) Cancer and mental handicap: a further study. British Journal of Psychiatry; 156:531-33.
55
Cooke, L.B (1997) Cancer and learning disability. Journal of Intellectual Disability Research;41:312-16.
56
Duff M, Hoghton M, Scheepers M, Cooper M, & Baddeley P (2001) Helicobacter pylori: has the killer escaped from the
institution? A possible cause of increased stomach cancer in a population with intellectual disability. Journal of Intellectual
Disability Research;45:219-25.
57
Tuffrey-Wijne I, Hogg J, Curfs L. End of life and palliative care for people with intellectual disabilities who have cancer or
other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual
Disabilities 2007;20:331-44.
58
Bemal J. Telling the truth-or not: Disclosure and information for people with intellectual disabilities who have cancer.
International Journal on Disability and Human Development 2008;7:365-70.
41
Learning disabilities in Salford: A Health Need Assessment 2011
4.2.4 Epilepsy
People with LD have a much higher risk of having epilepsy than the rest of the
population. It is estimated that a third of people with LD have epilepsy, this is at least
twenty times higher than the non LD population. This risk increases with severity of
impairment with seizures commonly multiple and resistant to drug treatment59 60
61
.Furthermore, uncontrolled epilepsy can have serious negative consequence on both
quality of life and mortality62 63. Seizures can also cause fractures and soft tissue injuries
and both epilepsy and antiepileptic drugs can affect learning and concentration. There is
also an increased risk of sudden, unexpected death in epilepsy.
A NICE Audit suggested that 40% of adult deaths from epilepsy were potentially
avoidable64. Poor documentation, communication and information sharing were
implicated in a large number of these cases. Local data from NHS Salford Health
Checks, indicate that as many as 25% (227) of people with LD in Salford have epilepsy,
representing an important challenge locally.
4.2.5 Mental Health
Poor mental health is more common amongst both adults and children with learning
disabilities than the rest of the population. One study suggests that 48% of adults under
65 with a learning disability have a mental health problem, though this included
behavioural problems; the rate for people aged 65 or over was 69%. Furthermore,
studies suggest that the prevalence of schizophrenia in those with learning disabilities
may be 3-4 times higher than in the non LD population. People with learning disabilities
have also expressed concern regarding the availability of, and access to, mental health
services65 66 67.
The risk factors for depression in the general population, such as stress, lack of social
support and life events, are the same for people with learning disabilities. However,
people with learning disabilities suffer high levels of abuse and are therefore at greater
risk of post-traumatic stress disorder. Older adults with learning difficulties in particular
may be further disadvantaged because of limited coping skills and experiences of
discrimination, rejection, stigma and abuse68. Moreover, people with learning disabilities
may be more vulnerable to adverse life events and consequently suffer adjustment
disorder more commonly than the non LD population. However, the significance of life
events such as bereavement for people with learning disabilities is often not recognised.
Although people with learning disability have a higher prevalence of mental illness than
59
Amiet C, Gourfinkel-An I, Bouzamondo A, Tordjman S, Baulac M, Lechat P, et al. Epilepsy in autism is associated with
intellectual disability and gender: evidence from a meta-analysis. Biological Psychiatry 2008;64:577-82.
60
Branford D, Bhaumik S, Duncan F. Epilepsy in adults with learning disabilities. Seizure 1998;7:473-77.
61
Matthews T, Weston N, Baxter H, Felce D, Kerr M. A general practice-based prevalence study of epilepsy among adults
with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress. Journal
of Intellectual Disability Research 2008;52:163-73.
62
Kerr M, Bowley C. Evidence-based prescribing in adults with learning disability and epilepsy. Epilepsia 2001;42(Suppl.
1):44-45.
63
Kerr M, Bowley C. Multidisciplinary and multiagency contributions to care for those with learning disability who have
epilepsy. Epilepsia 2001;42(Suppl. 1):55-56.
64
NICE (2004) The epilepsies: diagnosis and management of epilepsies in adults and children in primary and secondary
care.
65
Hassiotis A, Barron P, O’Hara J. Mental health services for people with learning disabilities: a complete overhaul is
needed with strong links to mainstream services. British Medical Journal 2000;321:583-84.
66
Roy A, Martin DM, Wells MB. Health gain through screening - mental health: developing primary health care services
for people with an intellectual disability. Journal of Intellectual & Developmental Disability 1997; 22:227-39.
67
Beecham J, Chadwick O, Fidan D, Bernard S. Children with severe learning disabilities: needs, services and costs.
Children & Society 2002;16:168–81.
68
Davies N (2008) Caring for older adults with learning disabilities. Nursing Standard, 22 (24), 42 – 48
42
Learning disabilities in Salford: A Health Need Assessment 2011
the rest of the population, medical professionals are less likely to diagnose psychiatric
problems in this group69.
Despite clear evidence that people with learning difficulties are more likely to have poor
mental health, data from the NHS Salford Health Checks suggest that only 6% have a
mental health issue. However it is important to recognise that poor detection and
misdiagnosis may account for some of this observed difference. For many of those who
do access adult mental health services, there is often a reluctance and lack of
confidence expressed by staff, believing that they do not have the right skills or are
adequately trained to deal with needs of people with a learning disability70. It is therefore
important to ensure that local strategies aimed at improving the mental health of the
Salford population do not overlook the needs of this population group.
4.2.6 Dementia
The prevalence of dementia is higher amongst older adults with learning disabilities
compared to the non LD population (22% vs. 6% aged 65+), and is associated with a
range of potentially challenging behaviours and health problems 71 72. People with
Down’s syndrome are at particularly high risk of developing dementia, with the age of
onset being 30-40 years younger than that for the general population71. Amongst people
with moderate to profound learning disabilities, deaths from dementia are more common
in men than women72.
In Salford there are approximately 7 people with LD who have a confirmed diagnosis of
dementia. However the true prevalence is expected to be much higher, with
misdiagnosis accounting for the relatively lower than expected prevalence locally.
4.2.7 Sensory impairments
Sensory impairments are common amongst people with LD. Prevalence estimates for
vision impairments vary widely but indicate a higher prevalence among people with
learning disabilities. Rates of hearing impairments are also higher, particularly among
older people, people with Down’s syndrome and/or people with more profound
disabilities6. In ageing adults with learning disabilities, there is a high probability of more
than one sensory impairment. The consequence can result in a reduction in information
received; difficulties in understanding activities, objects and words; and limited, distorted
or inaccurate perceptions of the environment.
4.2.7.1 Vision impairment
People with learning disabilities are 8-200 times more likely to have a vision impairment
compared to the general population73. Up to 30% of people with learning disabilities are
reported to have significant impairment of sight, whilst 10% are blind or partially sighted.
Whilst, three quarters of people with learning disabilities have refractive errors.
69
Ali, A. and Hassiotis, A. (2008) Illness in people with intellectual disabilities: Is common, under diagnosed and poorly
managed British Medical Journal 336: 570-1
70
Chaplin, E. et al (2009) Mental health services for people with intellectual disability: challenges to care delivery British
Journal of Learning Disabilities 37: 157-164
71
Cooper SA. High prevalence of dementia among people with learning disabilities not attributable to Down’s syndrome.
Psychological Medicine 1997;27:609-16.
72
Cooper SA. A population-based health survey of maladaptive behaviours associated with dementia in elderly people
with learning disabilities. Journal of Intellectual Disability Research 1997;41:481-87.
73
Carvill S. Review: Sensory impairments, intellectual disability and psychiatry. Journal of Intellectual Disability Research
2001;45:467-83.
43
Learning disabilities in Salford: A Health Need Assessment 2011
There are particularly high levels of visual problems in those with Down’s syndrome and
fragile X syndrome. Up to 60% of people with Down’s syndrome have acquired
cataracts. Mild to moderate visual loss such as squints or long or short sightedness are
also common in people who have Down’s syndrome. Such problems can worsen in later
life but with the risk of under-diagnosis68. Those living independently or with family are
significantly less likely to have had a recent eye examination than those living with paid
support staff 74.
In Salford 3% of people who had a Health Check were recorded as having impaired
vision. However in a recent local pilot study75 (May 2010), which looked at orthoptic
services for adults with LD, 38% of participants were identified as having a sight problem
with only half of all participants having previously received an eye test. The study also
acknowledged that the prevalence of visual impairment maybe more significant as a
number of initially identified participants were unable to participant and the outcome of
community conducted test results was unknown in a number of cases. The study
however, clearly demonstrates an area of unmet need and the potential for existing data
to underestimate true levels of health need.
4.2.7.2 Hearing impairment
The reported prevalence of hearing impairment in adults with LD is in the range 22-68%,
depending on the population studied. About 7% of these are deaf or partially deaf. There
are a number of different causes, e.g. congenital problems, recurrent infections or
impacted earwax. Hearing deteriorates at a faster rate in people with Down’s syndrome
than in the general population or in other people with learning disabilities.
Local data indicates that there are 61 (7%) people with LD in Salford experiencing
hearing problems with a further 35 (4%) who are deaf. Hearing impairment can have
serious consequences as it impacts on the ability to communicate effectively; absorb
information correctly; cause unnecessary anxiety and can contribute to falls and injuries.
Subsequently this can lead to social withdrawal decreasing mobility and adversely
affecting mental wellbeing.
4.2.8 Physical impairments
Among adults with learning disabilities, being non-mobile has been associated with a
sevenfold increase in death and being partially mobile has been associated with a
twofold increase of death when compared with being fully mobile76.Of all those with
severe learning disabilities, 15% have difficulty walking and 10% are unable to walk.
Mobility problems can lead to secondary problems such as respiratory diseases,
osteoporosis, chronic constipation, Gastro-oesophageal Reflux Disease and pressure
sores.
4.2.8.1 Postural care
A population-based study in the Netherlands reported that people with learning
disabilities are 14 times more likely to have musculo-skeletal impairments than the rest
74
Starling S, Willis A, Dracup M, Burton M, Pratt C. 'Right to sight' Accessing eye care for adults who are learning
disabled. Journal of Intellectual Disabilities 2006;10(4):337-55.
75
Kaill, S (2010) Vision Checks for Adults with Learning Disabilities – Pilot Study. NHS Salford Orthoptic Department. May
2010.
76
Tyrer F, McGrother C. Cause-specific mortality and death certificate reporting in adults with moderate to profound
intellectual disabilities. Journal of Intellectual Disability Research 2009;53:898-904.
44
Learning disabilities in Salford: A Health Need Assessment 2011
of the population77. In Salford there are approximately 40 individuals who require 24 hour
postural management to manage musculo-skeletal conditions. This has proven effective
in the prevention of deterioration of scoliosis.
4.2.9 Oral Health
Dental disease is twice as common amongst adults with LD as in the rest of the
population, with higher levels of both tooth decay and gum disease. Good oral health
contributes to the overall quality of life of the individual including the ability to eat and
drink.
One in three adults with learning disabilities and four out of five adults with Down’s
syndrome have unhealthy teeth and gums78, with adults living with families having more
untreated decay and poorer oral hygiene79.
Surveys of both children and adults show more extractions, less restorative care and
high levels of treatment needed. This may reflect low uptake of services and/or specific
factors that may increase the need for intervention, such as dento-facial abnormalities,
gastro-oesophageal reflux or the effects of regular medication. At a recent consultation
event with adults with LD in Salford most people (76%) reported seeing their dentist
regularly.
4.2.10 Dysphagia
Eating, feeding or swallowing problems (dysphagia) is higher in people with learning
disabilities than in other population groups and is often an unrecognised problem. At
least half of all adults with moderate to severe LD suffer from dysphagia. Difficulties with
eating, drinking and swallowing have implications for health, safety and wellbeing. If left
unmanaged, this can result in serious health complications including poor nutrition,
dehydration, aspirating on food or liquid, choking, respiratory tract infections and
reduced quality of life. Among adults with learning disabilities, 40% of people with
dysphagia experience recurrent respiratory tract infections. Other negative health
consequences of dysphagia include asphyxia, dehydration and poor nutritional status80.
According to data from NHS Salford Health Checks 4.8% (44) of LD patients have
swallowing difficulties. However a local audit in 2007 indicated that the number of people
with dysphagia is increasing as the number of people with complex needs also increase.
Locally there are 15 individuals with PEGs (direct food into the stomach via a tube),
which represents an increase of 150% since 2007 and an emerging and escalating
challenge for services.
4.2.11 Diabetes
Diabetes doubles the risk of vascular problems, including CVD. Evidence suggests that
there are increased rates of diabetes among adults with learning disabilities81. Despite
77
van Schrojenstein Lantman De Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with
intellectual disability in general practice: a comparative study. Family practice 2000;17:405-07.
78
Barr O, Gilgunn J, Kane T, Moore G. Health screening for people with learning disabilities by a community learning
disability service in Northern Ireland. Journal of Advanced Nursing 1999;29:1482-91.
79
Tiller S, Wilson KI, Gallagher JE. Oral health status and dental service use of adults with learning disabilities living in
residential institutions and in the community. Community Dental Health 2001;18:167-71.
80
Chadwick D, Jolliffe J. A descriptive investigation of dysphagia in adults with intellectual disabilities. Journal of
Intellectual Disability Research 2009;53(1):29-43.
81
Straetmans JMJAA, van Schrojenstein Lantman-de Valk HMJ, Schellevis FG, Dinant G-J. Health problems of people
with intellectual disabilities: the impact for general practice. British Journal of General Practice 2007;57:64–66.
45
Learning disabilities in Salford: A Health Need Assessment 2011
this, data from NHS Salford Health Checks suggest that only 7% (67) of LD patients
have diabetes; of these the majority (58) have Type 2 diabetes. However, diabetes is
generally under reported and poorly identified therefore existing data may underestimate
local prevalence; particularly for Type 2 diabetes. Rates of hypertension are higher at
11% presenting further evidence of existing and potential health need.
Whilst quantitatively it appears to be an area of limited need locally; national evidence,
the incidence of obesity, poor diagnosis and underreporting suggest that diabetes may
be much more prevalent than is evident in Salford. Furthermore, like both CVD and
Cancer LD population changes will likely produce increased numbers of people with
diabetes.
4.2.12 Gastro-oesophageal Reflux Disease (GORD)
GORD causes pain and may contribute to sleep disturbance, problem behaviour,
anaemia and risk of oesophageal cancer82. There is neither national nor local data on
the prevalence of GORD among people with learning disabilities. However, this is an
important issue in terms of dysphagia and more significantly respiratory mortality.
4.2.13 Osteoporosis
Studies from Australia and the USA indicate that people with learning disabilities may
have increased prevalence of osteoporosis and lower bone density than the non LD
population83 84 85, with increased fractures occurring throughout the life span, particularly
in people with LD and epilepsy86. Fractures can occur with only minor injury and can be
multiple87.
Contributory factors include lack of weight-bearing exercise, delayed puberty, earlierthan-average age at menopause for women, poor nutrition and being underweight.
Some antiepileptic and antipsychotic drugs can also affect bone structure. Women with
learning disabilities should have bone density tests and medication such as vitamin D
supplementation to improve bone density. There is no existing available data on the
prevalence of osteoporosis among people with learning disabilities in Salford. More data
is required to understand current and future need locally.
4.2.14 Endocrine Disorders
Adults with Down’s syndrome are at increased risk of thyroid dysfunction, particularly
hypothyroidism, compared to the non LD population, with the incidence of thyroid
dysfunction increasing with age88 89. Local data indicates that 8% (74) of the local LD
population have hypothyroidism.
82
NHS Health Scotland. People with Learning Disabilities in Scotland: Health Needs Assessment Report. Glasgow: NHS
Health Scotland, 2004.
83
Center J, Beange H, McElduff A. People with mental retardation have an increased prevalence of osteoporosis: A
population study. American Journal on Mental Retardation 1998;103:19-28.
84
Tyler CVJ, Snyder CW, Zyzanski S. Screening for osteoporosis in community-dwelling adults with mental retardation.
Mental Retardation 2000;38:316-21.
85
Jaffe JS, Timell AM, Gulanski BI. Prevalence of low bone density in women with developmental disabilities. Journal of
Clinical Densitometry 2001;4: 25-29.
86
Jancar J, Jancar M P (1998) Age-related fractures in people with intellectual disability and epilepsy. Journal of
Intellectual Disability Research, 42, 429-433
87
NHS Health Scotland. People with Learning Disabilities in Scotland: Health Needs Assessment Report. Glasgow: NHS
Health Scotland, 2004.
88
Loudon M M, Day R E, Duke E M C (1985) Thyroid dysfunction in Down’s syndrome. Archives of Disease in Childhood,
60, 1149-1151
89
Rooney S, Walsh E (1997) Prevalence of abnormal thyroid function tests in a Down’s syndrome population.
International Journal of Medical Science, 166, 80-82
46
Learning disabilities in Salford: A Health Need Assessment 2011
4.2.15 Injuries, accidents & falls
High rates of accidents and injuries amongst people with learning disabilities, including
injuries from falls, have been reported in studies undertaken in Canada, Australasia, the
Netherlands and the US90 91 92 93 94. In Denmark and Australia, accidents have been
reported to be a more common cause of death among people with learning disabilities
than in the non LD population95. There is no existing national or local data on the
prevalence of injuries, accidents or falls among people with learning disabilities.
90
Grant HJ, Pickett W, Lam M, O'Connor M, Ouellette-Kuntz H. Falls among persons who have developmental disabilities
in institutional and group home settings. Journal on Developmental Disabilities 2001;8:57-73.
91
Hsieh K, Heller T, Miller AB. Risk factors for injuries and falls among adults with developmental disabilities. Journal of
Intellectual Disability Research 2001;45:76-82.
92
Sherrard J, Tonge BJ, Ozanne-Smith J. Injury risk in young people with intellectual disability. Journal of Intellectual
Disability Research 2002;46:6-16.
93
Janicki MP, Davidson PW, Henderson CM, McCallion P, Taets JD, Force LT, et al. Health characteristics and health
services utilization in older adults with intellectual disability living in community residences. Journal of Intellectual Disability
Research 2002;46:287-98.
94
Wagemans A, Cluitmans J. Falls and fractures: A major health risk for adults with intellectual disabilities in residential
settings. Journal of Policy and Practice in Intellectual Disabilities 2006; 3:136-38.
95
NHS Health Scotland. People with Learning Disabilities in Scotland: Health Needs Assessment Report. Glasgow: NHS
Health Scotland, 2004.
47
Learning disabilities in Salford: A Health Need Assessment 2011
5. INEQUALITIES IN WELLBEING
MAIN MESSAGES

Adult people with learning disabilities are particularly vulnerable to both health
and social inequalities.

The wider determinants of health, which include accommodation, education and
employment, play an important role in the health and well-being of people with
learning disabilities.

Adults with learning disabilities often have health needs that go unrecognised and
untreated, due to difficulties in communication, diagnostic overshadowing,
discrimination or indifference.

Lifestyle factors can be particularly difficult for people with LD to manage.

Levels of both underweight and obesity are significantly higher amongst people
with LD in Salford than the resident non LD population.

Information on alcohol & substance use and the sexual health of adults with LD in
Salford is largely unknown.
5.1
DETERMINANTS OF HEALTH INEQUALITIES
Good health is dependent on a number of factors including biological factors; lifestyle
choices, access to services and the environment (including education, housing,
employment etc). Research studies have investigated five broad classes of determinants
of the health inequalities faced by people with learning disabilities that are, in principle,
potentially amenable to intervention. These include the following:
 Increased risk of exposure to well established ‘social determinants’ of health;
 Increased risk associated with specific genetic and biological causes of learning
disabilities;
 Communication difficulties and reduced health ‘literacy’;
 Personal health risks and behaviours;
 Deficiencies in access to and the quality of healthcare provision.
Evidence for these determinants of health inequalities (which are not presented in any
priority order) is described below.
5.2
THE ‘SOCIAL DETERMINANTS’ OF HEALTH
People with learning difficulties are more likely to be exposed to common ‘social
determinants’ of health such as poverty, poor housing conditions, unemployment, social
disconnectedness and overt discrimination96 97 98 99 100 101. In particular people with
96
Emerson E, Madden R, Robertson J, Graham H, Hatton C, Llewellyn G. Intellectual and Physical Disability, Social
Mobility, Social Inclusion & Health: Background paper for the Marmot Review. Lancaster: Centre for Disability Research,
Lancaster University, 2009.
48
Learning disabilities in Salford: A Health Need Assessment 2011
mild/moderate learning disabilities are more likely to experience material and social
hardship than people with severe or profound and multiple learning disabilities.
The association between exposure to such adversities and health status is at least as
strong among people with learning disabilities as it is among the general population102
103
.Exposure to bullying at school and overt discrimination in adulthood are
independently related to the poorer health status of people with learning disabilities104.
Given the association between minority ethnic status and poverty and the exposure of
people with learning disabilities from minority ethnic communities to overt racism105, it is
likely that people with learning disabilities from minority ethnic communities will face
greater health inequalities than people with learning disabilities from majority ethnic
communities.
Furthermore people with learning disabilities report high levels of community exclusion.
A recent study reported that one in three people with a learning disability had reported
that someone had been rude to them directly about their learning disability and one in
ten had been victim of crime (Emerson, 2008).
5.2.1 Employment
Employment has been shown to have a positive impact on health. In a recent survey,
and according to national statistics, over four in five (83%) of people with learning
disabilities of working age were unemployed43 106. The chances of having any paid
employment were, however, much greater for people with less severe learning
disabilities. 28% of people with a mild/moderate learning disability had some form of paid
employment compared to 10% of people with a severe learning disability and 0% of
people with profound and multiple learning disabilities107. According to data for Salford108
the majority of people with LD, ‘known to services’, are unemployed (79%). Of those
reported as employed the majority work, either as paid employees or are self employed,
between 4 and 16 hours a week (69%).
For people with LD, employment provides financial resources and social interaction, both
of which play a positive, and protective, role in health. Conversely, unemployment is
linked to deprivation and health inequalities, therefore the low levels of employment in
97
Beresford B, Rhodes D. Housing and Disabled Children. York: Joseph Rowntree Foundation, 2008.
Emerson E. Self-reported exposure to disablism is associated with poorer self-reported health and well-being among
adults with intellectual disabilities in England: Cross sectional survey. Public Health in press.
99
Emerson E. Household deprivation, neighbourhood deprivation, ethnicity and the prevalence of intellectual and
developmental disabilities Journal of Epidemiology and Community Health in press.
100
Emerson E, Malam S, Davies I, Spencer K. Adults with Learning Difficulties in England 2003/4. Leeds: Health & Social
Care Information Centre, 2005.
101
Emerson E, Hatton C. Socio-economic position, poverty and family research. In: Glidden LM, Seltzer MM, editors. On
Families: International Review of Research on Mental Retardation. New York: Academic Press, 2010.
102
Emerson E, Hatton C. The mental health of children and adolescents with intellectual disabilities in Britain. British
Journal of Psychiatry 2007;191:493-99.
103
Emerson E, Einfeld S, Stancliffe R. Predictors of the persistence of conduct difficulties in children with borderline or
intellectual disabilities. Under review.
104
Emerson E. Self-reported exposure to disablism is associated with poorer self-reported health and well-being among
adults with intellectual disabilities in England: Cross sectional survey. Public Health in press.
105
Mir G, Nocon A, Ahmad W, Jones L. Learning Difficulties and Ethnicity. London: Department of Health, 2004.
106
National Statistics & NHS Health and Social Care Information Centre (2004) Adults with learning difficulties in England
2003/4.
107
Emerson, E & Hatton, C (2008) People with Learning Disabilities in England. Centre for Disability Research. CeDR
Research Report 2008: 1 (May 2008).
108
Data taken from the Valuing People Now annual self assessment 2009/2010
98
49
Learning disabilities in Salford: A Health Need Assessment 2011
the LD population further exacerbate risk to health and the inequalities experienced by
adults with LD.
Box 5.1: Working in Salford
“I’ve lived in Little Hulton all my life and I have always gone into the local shop. I knew
everyone who worked there. With help from my employment advisor, I managed to
get a work placement there. This developed into a paid position. I still receive support
from my advisor and now work two mornings a week. I really like my job and getting
to speak to all the customers who come in. Working means I can spend my wages on
DVDs which I love!”
(Food Store Assistant, Little Hulton)
“I like helping people and seeing different faces every day. Being a receptionist would
be my ideal job so I spoke to my advisor about it. They searched for me and spotted
something at the Salford Primary Care Trust. My advisor was really supportive and
even came with me to my interview. They must have been my lucky charm because I
got it! I had support from my advisor to learn my role. I’ve now been working there for
ages and love being part of a team” (Assistant Receptionist, Eccles)
5.2.2 Crime
People with learning disabilities are often the victims of crimes and are particularly
vulnerable to high levels of sexual, physical and emotional abuse. This applies to those
living in their own homes and to those in residential care. In Salford there were 3 hate
crimes/incidents reported against people with LD during 2009/2010.
5.2.2.1 Offending
Nationally, there are a small but significant number of people who are arrested and taken
into police custody who have learning disabilities. In order for a criminal offence to have
occurred, there must be adequate proof of ‘mens rea’, ie an intention to commit an
offence. If the police identify someone with LD and decide that they do not have mens
rea, they can use discretion and decide not to prosecute. However this is dependent on
police officers, untrained in LD, identifying that a suspect has these specific needs. The
impact of custody on health is significant as it can exacerbate mental ill health, heighten
vulnerability and increase the risk of self-harm and suicide.
The Prison Reform Trust recently published a body of work entitled ‘No-one knows’
(2007). This estimates that 20-30% of all offenders, have learning disabilities or more
mildly, learning difficulties (such as the capacity to read) that interfere with their ability to
cope within the Criminal Justice System and indeed is often a cause of their presence
therein. Furthermore, the Bradley Report (2009) indicates that the general prison regime
(i.e. reception, induction, transfer and release) does not cater for the needs of prisoners
with LD. Prison terminology and complex rules and regimes mean that people with
learning disabilities, including difficulties with speech, language or communication, have
problems coping with the demands of prison environment.
50
Learning disabilities in Salford: A Health Need Assessment 2011
Risk factors for offending include mild/borderline learning disabilities, youth, low socioeconomic status, poor parenting experience and early institutionalisation. Overall it is
suggested that there are:
 High numbers of offenders with mild and borderline learning disabilities;
 Increased levels of offending amongst those with mild and borderline learning
disabilities;
 Lower levels of offending amongst people with severe and profound learning
disabilities;
 Differences in the quality of offending between people with mild learning disabilities
and those with more severe learning disabilities; the former are more likely to
commit violent crimes that require planning or complex skills;
 High levels of mental illness and/or substance misuse in offenders with learning
disabilities;
 Probably increased rates of arson and sexual offences amongst offenders with
learning disabilities, although bias in court referral to hospital may skew this
picture;
 Higher levels of recidivism amongst offenders with borderline learning disabilities.
HMP Forest Bank, a privately run Prison for young, male offenders in Salford, houses
prisoners from across Greater Manchester including Salford. The number of prisoners at
Forest Bank with LD is currently unknown however, using extrapolated national data,
there may be as many as 381 (30%) prisoners with a learning difficulty. A recent Health
Need Assessment for prisoners at Forest Bank acknowledged the exacerbated health
needs of prisoners with LD. Whilst there are no specific plans to address the needs of
prisoners with LD at Forest Bank the Mental Health In Reach Team, who provide mental
health services for prisoners at HMP Forest Bank are currently developing plans to
further the service to work more with prisoners with LD109. Furthermore, a member of the
Salford Learning Difficulties Partnership Board has recently been invited to sit on the
Board at the prison. Moreover, Salford has regular reviews of all detained people; works
closely with the regional Secure Commissioning Team and is involved in the Regional
Strategy for people in the criminal justice system.
5.2.3
Housing
Over the last few years, there has been a change in need and people with learning
disabilities are choosing to live more independently. There are therefore a variety of
settings in which people with learning disabilities now reside. These include family
homes (many supported by older parents), group residential accommodation, their own
homes, sheltered housing, hostels, private shared arrangements supported by home
carers or others, or other forms of supported lodgings. Often these living arrangements
make healthy choices difficult. Carers play a key role in supporting and encouraging
healthier lifestyles and it is essential that they are confident about healthy lifestyle
messages.
Nationally it is estimated that 60% of people with LD live with their families110. In Salford
the majority of people with LD ‘known to services’ live in settled accommodation and are
tenants (50%) or living with family and friends (39%). People with LD living in private
households are much more likely to live in areas characterised by high levels of social
deprivation and are also much more likely to experience material and social hardship
109
110
NHS Salford (2011) HMP Forest Bank Health Needs Assessment. Sophie Carr Consulting. January 2011.
Department of Health (2001) Valuing People.
51
Learning disabilities in Salford: A Health Need Assessment 2011
than people in supported accommodation. Social deprivation and exclusion are both
associated with poorer health. A least one homeless person in Salford is registered as
having a learning difficulty. Figure 4 illustrates where people with LD, known to Salford
City Council, live in Salford. It is apparent, reflecting national evidence, that the majority
of people with LD in Salford live in areas acknowledged as deprived.
Figure 4: Map showing location of current LD clients across Salford
WALKDEN &
LITTLE HULTON
SWINTON
EAST SALFORD
CLAREMONT
& WEASTE
WORSLEY &
BOOTHSTOWN
ECCLES
ORDSALL &
LANGWORTHY
IRLAM & CADISHEAD
Source: CHSC RIS Team using MapInfo software
People living in private households are also less likely to access health services than
those living in supported accommodation were rates of use of all health services are
higher. Rates of smoking are also thought to be higher among people living in private
households. Furthermore, as a result of continuing to live with their family, people with
LD are less likely to have contact with friends and members of their family that they are
not living with. This may have a detrimental impact on health as friendships and
relationships promote positive mental health.
Box 5.2: Independent living in Salford!
A man with learning difficulties and severe autism has recently been supported to
return back to Salford. He had been placed out of Salford for many years in a
specialist unit provided by the National Autistic Society.
The multi-disciplinary team, using person centred approaches and total
communication methods, worked with him and his family to identify exactly what he
would need to successfully return home. He has now moved into his own
accommodation with a staff team who know how he likes to be supported.
The man and his family are delighted with the move, a move that in the past may
have seemed impossible to achieve given the complexity of his needs and
behaviours.
52
Learning disabilities in Salford: A Health Need Assessment 2011
Housing arrangements therefore play an important and complex role in the health status
of people with LD. Consequently the health needs of people are significantly influenced,
and varied, according to their living arrangements.
5.2.4 Activities of daily living
Many individuals with severe learning disabilities require help with the activities of daily
living. Analysis of the OPCS Disability Survey111 suggested that the majority of adults
identified as having learning disabilities and resident in private households needed help
with meals/cleaning; 23% were unable to feed or use the toilet themselves and 11%
needed help every night.
5.3
GENETIC & BIOLOGICAL FACTORS
People with moderate to profound learning disabilities are more likely than the general
population to die from congenital abnormalities112. In addition a number of syndromes
associated with learning disabilities are also associated with some specific health risks113
114 115 116
. For example:
 congenital heart disease is more prevalent among people with Down’s syndrome
and Williams syndrome;
 early onset dementia is more common in people with Down’s syndrome;
 hypothalamic disorders are more prevalent among people with Prader-Willi
syndrome;
 mental health problems and challenging behaviours are more prevalent among
people with autism spectrum disorders, Rett syndrome, Cornelia de Lange
syndrome, Riley-Day syndrome, Fragile-X syndrome, Prader-Willi syndrome,
Velocardiofacial syndrome, Williams syndrome and Lesch-Nyhan syndrome;
 obesity is more prevalent among people with Prader-Willi syndrome, Cohen
syndrome and Bardet-Biedl syndrome.
5.4
COMMUNICATION & HEALTH LITERACY
People with learning disabilities often present with common health needs, however they
can find it difficult to recognise, report and describe symptoms of illness. Speech,
language and communication problems are the most common disability presenting with
learning disability and forms the largest group of communication-impaired individuals in
the population:
 90% of people with learning disabilities have communication difficulties.
 80% of those with severe learning disabilities fail to acquire effective speech.
 60% of people with learning disabilities have some skills in symbolic
communication, sign languages or picture symbols.
 Approximately 20% of people have no verbal communication, but do demonstrate
intentional communication and up to 20% have no intentional communication skills.
In Salford, a 2007 internal audit identified 104 people experiencing communication
difficulties. For 69 people this was severe in nature. Crucially, limited communication
111
OPCS Surveys of Disability in Great Britain, 1985.
Tyrer F, McGrother C. Cause-specific mortality and death certificate reporting in adults with moderate to profound
intellectual disabilities. Journal of Intellectual Disability Research 2009;53(11):898-904.
113
Emerson E, Einfeld S. Challenging Behaviour. 3rd Edition. Cambridge: Cambridge University Press, in press.
114
Dykens EM, Hodapp RM, Finucane BM. Genetics and mental retardation syndromes: A new look at behavior and
interventions. Baltimore: Paul H. Brookes Publishing, 2000.
115
Harris JC. Intellectual Disability: Understanding Its Development, Causes, Evaluation, and Treatment. Oxford: Oxford
University Press, 2005.
116
Batshaw ML, Pellegrino L, Roizen NJ, editors. Children with Disabilities (6th Edition). Baltimore: P H Brookes, 2007.
112
53
Learning disabilities in Salford: A Health Need Assessment 2011
skills may reduce capacity to convey identified health needs effectively to others (e.g.,
relatives, friends, paid support workers). As a result, carers (unpaid and paid) play an
important role in the identification of health needs for many people with more severe
learning disabilities. However, they may have difficulty in recognising expressions of
need, particularly if the person concerned does not communicate orally117 118.
A number of high profile cases referenced within the policy context recognise
communication difficulties as a critical factor in the unnecessary and premature death of
a number of adults with LD. In most cases poor management and the limited
awareness of professionals with regard to the communication difficulties of people with
LD was implicated, delaying diagnosis and or effective management of pain and
resulting in diagnostic overshadowing.
‘Inclusive communication’ provides a supportive environment where any and every
available means of communication is used to understand and to be understood. This
may mean simplifying language, slowing down, using easier words and showing people
what is meant (using pictures, photos, objects, actions) in order to maximise
communication potential and therefore participation in everyday life experiences. The
implementation of such methods can significantly improve communication not only for
the LD population but also more broadly across the population. This is particularly
relevant for communities such as Salford where literacy levels generally are poor.
Box 5.3: A Salford Success Story
NHS Salford funded a new communication aid (a device that speaks when keys are
pressed) for a female in her twenties to replace her extremely old and obsolete
communication aid. The new communication aid made a huge difference to her life,
effectively giving her a voice. She said that ‘“having my aid, it is faster than the old
one. I can text old friends and laugh and joke with my family. I can play music on it
and I can turn the television over with it”
It also increased her independence and allowed her to organise trips and events for
both herself and her family. She organised a surprise meal for her mum and dad.
She has also contacted (using the telephone connection) old friends whom she has
lost contact with years ago.
5.5
PERSONAL HEALTH RISKS & BEHAVIOURS
Lifestyle factors such as diet, exercise, smoking, sexual health and substance misuse
are all important risk factors which promote unnecessary and or premature onset of
illness or disease. A healthy lifestyle is particularly important for people with LD as their
risk, for a number of conditions, is already increased. However, people with learning
difficulties find that health risks are very difficult to manage by themselves.
117
Kerr AM, McCulloch D, Oliver K, et al. Medical needs of people with intellectual disability require regular reassessment,
and the provision of client- and carer-held reports. Journal of Intellectual Disability Research 2003;47:134–45.
118
Purcell M, Morris I, McConkey R. Staff perceptions of the communicative competence of adult persons with intellectual
disabilities. British Journal of Developmental Disabilities 1999;45:16–25.
54
Learning disabilities in Salford: A Health Need Assessment 2011
5.5.1 Healthy Weight
Research suggests that people with learning disabilities are much more likely to be
either underweight or obese than the general population119 120 121 122 123 124. Local data,
from NHS Salford Health Checks, reflects this evidence with a higher proportion of adults
with LD underweight or obese compared to the rest of the Salford population (see Graph
9).
Graph 9: BMI data for Salford and Salford LD Population
BMI Prevalence
39%
36%
27%
28%
26%
17%
11%
10%
3.70%
2%
Salford LD Population
Salford Non LD Population
<18.5
18.5 - 24.9
25 - 29.9
30 - 39.9
>40
Source: NHS Salford GP Registers
Furthermore, the number of people with LD classified as of healthy weight is much lower
than the general population (17% versus 27%) whilst the prevalence of overweight and
obesity is similar (72% versus 69%).
However, echoing national estimates, the local prevalence of obesity (BMI >30) is much
higher for people with learning disabilities compared to the non LD population (23%
119
Emerson E. Overweight and obesity in 3 and 5 Year old children with and without developmental delay. Public Health
2009;123:130-33.
120
Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, et al. Lifestyle related risk factors for poor
health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities
2000;21(6):469-86.
121
Messent PR, Cooke CB, Long J. Physical activity, exercise and health of adults with mild and moderate learning
disabilities. British Journal of Learning Disabilities 1998;26:17-22.
122
Emerson E. Underweight, obesity and physical activity in adults with intellectual disability in supported accommodation
in Northern England. Journal of Intellectual Disability Research 2005;49:134-43.
123
Bell A, Bhate M. Prevalence of overweight and obesity in Down’s syndrome and other mentally handicapped adults
living in the community. Journal of Intellectual Disability Research 1992;36:359-64.
124
Melville C, Hamilton S, Hankey C, Miller S, Boyle S. The prevalence and determinants of obesity in adults with
intellectual disabilities. Obesity Reviews 2007;8:223-30.
55
Learning disabilities in Salford: A Health Need Assessment 2011
versus 15%). Levels of morbid obesity (BMI >40) are also significantly higher for people
with LD compared to the rest of the population (10% versus 2%). True prevalence of all
obesity may however be much higher as studies have reported a prevalence of obesity
in adults with LD of between 10% and 26%125.
Women, people with Down’s syndrome, people with mild LD and people living in less
restrictive environments are all at increased risk of obesity124 126 127. Studies have also
found that the prevalence of obesity increases with age. A sedentary lifestyle and a
restricted range of opportunities to exercise or eat healthily are major contributory
factors128. Crucially people with LD often have limited opportunities to influence what
they eat, especially if shopping and cooking are done by others, which may mean little
control over diet.
Obesity increases the risk of the early onset of a number of preventable, chronic
diseases, including CVD and Cancer,129 130 and on average reduces life expectancy by
approximately 11 years131. The high level of overweight status amongst adults with LD is
also likely to be associated with an increased risk of diabetes132. The high prevalence of
obesity is of particular concern as total population prevalence is predicted to increase
significantly with much larger proportions of the population being obese in the future. As
prevalence levels of obesity are already much higher in the LD population obesity
represents a serious threat to health in this population.
The evidence base for successfully managing obesity through diet, exercise, behaviour
therapy, drugs and even surgery concentrates on the general population and needs to
be evaluated in the learning disability population. Furthermore, there is a lack of
evidence about the effectiveness of weight loss interventions in the long term therefore
methods for managing weight problems need to be adapted for the learning disability
population.
Conversely, the proportion of Salford adults with LD who are classified as underweight is
significantly higher than the rest of the population (11% versus 4%). Poor nutrition has a
negative impact on health. Furthermore being underweight is associated with
osteoporosis. Most significantly being underweight may also be indicative of eating or
swallowing difficulties.
125
Rubin S S, Rimmer J H, Chicoine B, Braddock D, McGuire D E (1998) Overweight prevalence in persons with Down
syndrome. Mental Retardation. 36 (3) 175 - 181
126
Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, et al. Lifestyle related risk factors for poor
health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities
2000;21(6):469-86.
127
Prasher VP. Overweight and obesity amongst Down’s syndrome adults. Journal of Intellectual Disability Research
1995;39:437-41.
128
Messent, P.R, Cooke, C.B & Long, J (1998) Physical activity, exercise and health of adults with mild and moderate
learning disabilities. British Journal of Learning Disabilities; 26: 17-22.
129
Kopelman, P (2007) Health risks associated with overweight and obesity. Short Science Review. ‘Foresight Tackling
Obesities: Future Choices’. Obesity Reviews, 8 (s1): 13 – 17.
130
Lang T & Rayner, G (2007) Overcoming Policy Cacophany on Obesity: An Ecologicla Public Health Framework for
Policy makers. Short Science Review. ‘Foresight Tackling Obesities: Future Choices’. Obesity Reviews, 8 (s1): 165 – 181.
131
Department of Health (2008b) Healthy Weight, Healthy Lives: A Cross Government Strategy for England. London:
Department of Health.
132
NHS Health Scotland. People with Learning Disabilities in Scotland: Health Needs Assessment Report. Glasgow: NHS
Health Scotland, 2004.
56
Learning disabilities in Salford: A Health Need Assessment 2011
Concerns about ‘weight issues’ have been raised by adults with LD and their carers at
both the Big Health Event (2010) and the Have your Say (2006) sessions reflecting the
epidemiological evidence presented.
5.5.2 Healthy Eating
People with learning disabilities report a lack of knowledge and choice about healthy
eating133. Less than 10% of adults with learning disabilities in supported accommodation
eat a balanced diet, with an insufficient intake of fruit and vegetables134. It has also been
suggested that carers generally have a poor knowledge about public health
recommendations on dietary intake. Poor diet has also been associated with less
profound disabilities and more independent living arrangements. In addition, physical
activity levels may be low particularly for people with more severe learning disabilities120.
5.5.3 Physical Activity
Over 80% of adults with learning disabilities engage in levels of physical activity below
the Department of Health’s minimum recommended level, and at a much lower level of
physical activity than the non LD population120 121. People with more severe learning
disabilities and people living in more restrictive environments are at increased risk of
inactivity120.
People with learning disabilities have high mortality rates from coronary heart disease
however physical activity has positive effects not only on weight management but also
on long-term mobility, mood and among other conditions, cardiovascular and coronary
heart disease.
5.5.4 Smoking
Smoking is associated with a number of chronic diseases, including cancer, COPD and
CVD, and is responsible for the majority of premature deaths in the UK. Fewer adults
with learning disabilities smoke compared to the rest of the population; with estimates of
prevalence varying between 15% and 19% compared to 20% in the non LD population.
These estimates are consistent with data from the NHS Salford Health Check register
which suggests that 17% (151) of people with LD in Salford smoke.
Whilst rates of smoking are lower than the general population; the higher incidence and
mortality associated with respiratory disease in people with LD indicate that smoking is
an important health issue.
5.5.5 Substance Use
Fewer adults with learning disabilities smoke tobacco or drink alcohol compared to the
non LD population120 135, with no UK research on illegal drug use within this population.
Within a sample of people with learning disabilities who admitted to substance misuse,
61% were male, and alcohol was the most misused substance136. There is no local data
on substance misuse for people with LD in Salford.
Rodgers J. “Whatever’s on her plate”: food in the lives of people with learning disabilities. British Journal of Learning
Disabilities 1998;26:13-16.
134
Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, Hallam A (2000) Lifestyle related risk factors
for poor health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities, 21,
469-486
135
Fidler W, Michell RG, Charlton A. Smoking: a special need? British Journal of Addiction 1992;87:1583-91.
136
Taggart L, McLaughlin D, Quinn B, Milligan V. An exploration of substance abuse in people with intellectual disabilities.
Journal of Intellectual Disability Research 2006;50(8):588-97.
133
57
Learning disabilities in Salford: A Health Need Assessment 2011
5.5.6 Sexual Health
The sexual health needs of people with learning disabilities have been overlooked137
consequently little is known about inequalities in the sexual health status of people with
learning disabilities in the UK. Results of research studies show little consistency, though
it appears that people with mild learning disabilities have similar rates of sexual activity
to those in the general population, while people with moderate or severe disabilities have
less.
There is, however, evidence to suggest that people with LD may face particular barriers
in accessing sexual health services138 and may have limited knowledge/access to
information about family planning and safer sex. They are unlikely to have had adequate
sex and relationships education (SRE) at school and there are challenges for service
providers in communicating SRE with people who have moderate or severe LD. As a
group they are often ‘infantalised’ by social stereotypes, affording a negative self-image
that may hinder the development and assertion of independent sexuality. Furthermore,
parents and care givers may be unwilling to engage with adults with LD about issues
around sex through fear that it might foster inappropriate behaviour. A common
trajectory seen by carers is for young adults to experience particular problems in early
adulthood, i.e. from transition from education at age 19 onwards. Alcohol and drug use
are identified as complicating factors that pre-dispose people with learning disabilities to
greater sexual health risk.
No data are available concerning the prevalence of HIV amongst people with learning
disabilities, although some adults with learning disabilities are known to engage in
behaviour placing them at risk of contracting HIV whilst effective HIV education and
prevention services for people with learning disabilities are scarce139 140 141 142. A
population-based study in the Netherlands reported that men with learning disabilities
were eight times more likely to have sexually transmitted diseases143. High rates of
unsafe sexual practices have been reported among gay men with learning disabilities.
There is currently no local information on the incidence of STI’s amongst people with LD
in Salford. Information on the use of local sexual health services by people with LD is
also unknown.
137
124. Fraser S, Sim J. The Sexual Health Needs of Young People with Learning Disabilities. Edinburgh: Health
Scotland, 2007.
138
Fraser S, Sim J. The Sexual Health Needs of Young People with Learning Disabilities. Edinburgh: Health Scotland,
2007.
139
Cambridge P (1995) Sexual health and learning disabilities. Nursing Times, 91, 11-12
Cambridge P (1996) Mean with learning disabilities who have sex with men in public places: mapping the needs of
services and users in South East London. Journal of Intellectual Disability Research, 40, 241-251
Cambridge P (1997) At whose risk? Priorities and conflicts for policy development in HIV and intellectual disability. Journal
of Applied Research in Intellectual Disabilities, 10, 83-104
140
Dent J A, Vergnaud S, Piachaud J (1994) HIV infection and people with learning disabilities. The Lancet, 343, 919
141
MacDonald R A R, Murray J L, Levenson V L (1999) Intellectual disability and HIV infection: a service-related study of
policies and staff attitudes. Journal of Applied Research in Intellectual Disabilities, 12, 348-357
142
Thompson D (1994) The sexual experience of men with learning disabilities having sex with men: issues for HIV
protection. Sexuality and Disability, 12, 221-242
143
van Schrojenstein Lantman De Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people
with intellectual disability in general practice: a comparative study. Family practice 2000;17:405-07.
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Learning disabilities in Salford: A Health Need Assessment 2011
6. INEQUALITIES IN ACCESS
MAIN MESSAGES
 Adult people with learning disabilities have a wide range of social and health care
needs however these are often unrecognised & unmet. For adults with LD there
are a number of barriers to services.
 Public health strategies in Salford make limited reference to targeting & provision
for adults with LD despite prevalence of some key public health issues exceeding
prevalence in the non LD population.
 Screening uptake for all programmes (cancer & non cancer) is considerably lower
than in the non LD population. Rates of immunisation are poorly understood
despite the elevated risk factors associated with having a learning difficulty.
 The introduction of annual health check for patients with LD has enhanced
information about the health needs of people with LD in Salford. It is however too
early to say if they have improved health.
 Demand for primary care is the same as the non LD population however given the
evidence of greater health need increased demand would be expected.
 Secondary care admissions are much higher than in the non LD population. More
effective interventions in primary care may reduce the disproportionately high use
of secondary care services.
 Little is understood about the use of community primary care services by patients
with LD however health need dictates it should be higher.
 Specialist services are established, integrated and well regarded locally.
6.1
ACCESS TO QUALITY HEALTHCARE
Although people with learning disabilities have a greater variety of healthcare needs
compared with the non LD population, many of these needs are unrecognised and
unmet. This is reflected in a series of high profile reports which describe continuing poor
practice in service delivery to people with LD, highlighting concern that people with LD
are effectively invisible to mainstream NHS services. Furthermore, evidence
demonstrates that health and social services are not yet commissioning or providing
services in a way that adequately meets the health needs of people with learning
disabilities.
The Disability Discrimination Act 1995 places a duty on all health and social care
organisations not to discriminate against disabled people or provide them with a poorer
quality of service. Organisations are therefore obliged to make ‘reasonable adjustments’
to reflect the health needs of disabled people. However professionals working in general
59
Learning disabilities in Salford: A Health Need Assessment 2011
healthcare often have limited knowledge of learning disabilities, there is poor partnership
working between agencies, and people with LD are not routinely identified in health data.
In Salford there have been a number of examples across the health system
demonstrating changes which constitute reasonable adjustments; making services
easier for people with LD to access. These include the dental service, self care healthy
lifestyle programmes, the annual health check, SRFT flagging and passports and breast
and cervical screening. However these developments have largely been ad hoc,
supported and initiated by a few dedicated people, rather than co-ordinated and
systematic.
Moreover, people with learning difficulties can find it more difficult to identify and
describe symptoms of illness and much harder to navigate the health system to obtain
treatment. Although many people with LD speak highly of the general healthcare they
receive, others refer to inappropriate stereotypes, negative attitudes by reception staff or
clinical staff and negative assumptions about a person’s quality of life. Attitudes affect
the extent to which concerns are treated seriously or dismissed, symptoms are explored
and opportunities to carry out screening or medicine reviews are taken up or missed.
Diagnostic overshadowing is frequently reported, with physical or psychological
symptoms being inappropriately attributed to the learning disability.
It has been argued therefore that the poorer health of people with LD results, in part,
from a number of organisational barriers144 145 146 147 . These include:
 scarcity of services;
 physical barriers to access;
 failure to make ‘reasonable adjustments’ in light of the literacy and communication
difficulties experienced by many people with learning disabilities;
 variability in the availability of interpreters for people from minority ethnic
communities;
 ‘diagnostic overshadowing’ (symptoms of physical ill health being mistakenly
attributed to either a mental health/behavioural problem or as being inherent in the
person’s learning disabilities);
 disablist attitudes among healthcare staff.
The unmet health needs of people with LD can be considered at four levels:
1. Strategic and health improvement needs – requiring support to enable healthy
lifestyles, appropriate health improvement material and access to health screening
programmes.
2. Everyday health needs – requiring primary care services.
3. Health needs related to having learning disabilities – needing extra support and
reasonable adjustments to be in place for services to be accessible.
4. Complex health needs related to profound learning and multiple physical
disabilities, epilepsy, mental ill health or autistic spectrum disorders.
144
Giraud-Saunders A. Equal access? A practical guide for the NHS: Creating a Single Equality Scheme that includes
improving access for people with learning disabilities. London: Department of Health, 2009.
145
Kwok H, Cheung PWH. Co-morbidity of psychiatric disorder and medical illness in people with intellectual disabilities.
Current Opinion in Psychiatry 2007;20:443-49.
146
Alborz A, McNally R, Glendinning C. Access to health care for people with learning disabilities in the UK: mapping the
issues and reviewing the evidence. Journal of Health Services Research & Policy 2005;10:173–82.
147
Alborz A, McNally R, Swallow A. From the Cradle to the Grave: a literature review of access to health care for people
with learning disabilities across the lifespan. London: National Co-ordinating Centre for NHS Service Delivery and
Organisation, 2003.
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Learning disabilities in Salford: A Health Need Assessment 2011
6.2
HEALTH PROMOTION & SCREENING
There is currently no specific reference to people with LD, in all but a few public health
strategies in Salford and there is no LD specific health strategy. Therefore there is
limited mainstream, or directed, targeting of public health strategies towards the LD
population even where there is clear evidence and health need (e.g. LD population
prevalence exceeds non LD prevalence) to do so. For example, there is very limited
reference to adults with LD in the Salford Obesity Strategy despite obesity prevalence
being much higher than in the non LD population. Furthermore, uptake of weight
management services in this group has been negligible and there have been no referrals
of adults with LD to weight management services by health professionals. There is
however evidence of targeted public health initiatives designed to support adults with LD
(e.g. Self Care, Health Walks); although these have been dependent on the commitment
of individuals at a delivery level, sporadic and locality based rather than via a strategic
and co-ordinated approach.
As the pattern of health need and causes of death differ for people with LD, research
suggests that most current policies and healthy lifestyle initiatives will widen rather than
close the health inequality gap148. Therefore the most effective healthy lifestyle initiatives
for people with LD will be those that target their leading causes of ill health and death. As
data on the causes of illness and death amongst the Salford LD population is not readily
available it is not possible, at this time, to target public health strategies in this way.
It is evident therefore that despite efforts at the delivery level, the absence of mainstream
and targeted strategies to improve the public health of adults with LD in Salford will
adversely affect health and increase the health inequalities experience by this population
group in Salford.
There are obviously a number of particular challenges to ensuring effective health
promotion for adults with LD. These include providing the extra support needed for
people with learning disabilities to make informed health choices, and developing
appropriate health and lifestyle education149. Access to health promotion may also be
significantly poorer for people with more severe learning disabilities150.
Moreover, there is strong evidence that the uptake of preventative services such as
immunisation and screening is less among people with LD. A number of studies have
reported low uptake of health promotion or screening activities among people with
learning disabilities151 152.These include:
 Assessment for vision or hearing impairments153 154;
 Routine dental care155 156;
148
Cooper, S. et al (2004) People with intellectual disabilities. Their health needs differ and need to be recognised and
met British Medical Journal 329: 414-415
149
NHS Primary Care Commissioning (2009) Learning disability: a benchmark for high quality commissioning
150
Kerr M, Felce D, Felce J. Equal Treatment: Closing the Gap. Final Report from the Welsh Centre for Learning
Disabilities to the Disability Rights Commission. Cardiff: Welsh Centre for Learning Disabilities, Cardiff University, 2005.
151
Alborz A, McNally R, Glendinning C. Access to health care for people with learning disabilities in the UK: mapping the
issues and reviewing the evidence. Journal of Health Services Research & Policy 2005;10:173–82.
152
Alborz A, McNally R, Swallow A. From the Cradle to the Grave: a literature review of access to health care for people
with learning disabilities across the lifespan. London: National Co-ordinating Centre for NHS Service Delivery and
Organisation, 2003.
153
Lavis D, Cullen P, Roy A. Identification of hearing impairment in people with a learning disability: from questioning to
testing. British Journal of Learning Disabilities 1997;25:100-05.
154
Yeates S. The incidence and importance of hearing loss in people with severe learning disability: the evolution of a
service. British Journal of Learning Disabilities 1995;23:79-84.
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Learning disabilities in Salford: A Health Need Assessment 2011
 Cervical smear tests157 158 159;
 Breast self- examinations and mammography160 161.162 163
This low uptake is reflected locally, with uptake for all screening programmes much
lower in the LD population, despite efforts to increase uptake at delivery level.
6.2.1 Immunisation
Nationally, levels of immunisation against tetanus, poliomyelitis and influenza are all
lower than the general population. Influenza immunisation is particularly important, given
the high prevalence of respiratory infections and premature deaths from pneumonia
amongst people with learning disabilities. There is currently no readily available local
data regarding uptake of flu vaccination in the LD population.
6.2.2 Screening
Screening programmes involve an offer of testing to a defined population to identify
those who could benefit from further investigation and management. They are crucial to
the early detection and prevention of many diseases and have resulted in significant
public health benefits. However, attendance for screening by adults with LD is much
lower than that for the non LD population. Evidence suggests that this is because people
with LD do not understand the purpose of the test164. Consultation with local service
users reflects this evidence; with the majority reporting that they did not know what
screening they should receive or enough about specific screening programmes (e.g.
breast and cervical). There is however evidence of success in providing knowledge and
skills to assist more able women to make an informed decision about the uptake of
screening and tolerate invasive procedures165.
6.2.2.1 Cancer Screening Programmes
Women with learning disabilities are much less likely to undergo cervical smear tests166
167
and to engage in breast cancer examinations or receive invitations to
155
Barr O, Gilgunn J, Kane T, Moore G. Health screening for people with learning disabilities by a community learning
disability service in Northern Ireland. Journal of Advanced Nursing 1999;29:1482-91.
156
Emerson E, Malam S, Davies I, Spencer K. Adults with Learning Difficulties in England 2003/4. Leeds: Health & Social
Care Information Centre, 2005.
157
Reynolds F, Stanistreet D, Elton P. Women with learning disabilities and access to cervical screening: retrospective
cohort study using case control methods. BMC Public Health 2008;8:30.
158
Djuretic T, Laing-Morton T, Guy M, Gill M. Concerted effort is needed to ensure these women use preventive services.
British Medical Journal 1999; 318:536.
159
Pearson V, Davis C, Ruoff C, Dyer J. Only one quarter of women with learning disability in Exeter have cervical
screening. British Medical Journal 1998;316:1979.
160
Djuretic T, Laing-Morton T, Guy M, Gill M. Concerted effort is needed to ensure these women use preventive services.
British Medical Journal 1999; 318:536.
161
Piachaud J, Rohde J. Screening for breast cancer is necessary in patients with learning disability. British Medical
Journal 1998;316:1979.
162
Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes.
Journal of Intellectual Disability Research 2001;45:253-57.
163
Willis DS, et al. Breast cancer screening in women with learning disabilities: current knowledge and considerations.
British Journal of Learning Disabilities 2008;36:171-84.
164
Broughton S, Thomson K (2000) Women with learning disabilities: risk behaviours and experiences of the cervical
smear test. Journal of Advanced Nursing, 32, 905-912
165
Alborz, A. et al (2006) A Literature Review on the Effectiveness of Interventions to Improve the Physical Health of
People with Learning Disabilities Disability Rights Commission
166
Djuretic T, Laing-Morton T, Guy M, Gill M (1999) Concerted effort is needed to ensure these women use preventive
services. British Medical Journal, 318, 536
167
Pearson V, Davis C, Ruoff C, Dyer J (1998) Only one quarter of women with learning disability in Exeter have cervical
screening. British Medical Journal, 316, 1979
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Learning disabilities in Salford: A Health Need Assessment 2011
mammography168 169 170 than the non LD population. Local uptake for both breast and
cervical screening replicates this evidence and although there has been much work to
increase uptake; the proportion of women with LD undergoing both breast and cervical
screening in Salford is much lower that the non LD population. Currently171 only 28% of
women with LD have had a breast screen and 44% have undergone a cervical screen.
Whilst this is an increase on the figures for 2008/2009 (17% for breast & 33% for
cervical) uptake remains considerably lower than the proportion attending in the non LD
population (70% for breast & 77% for cervical). In general the PCT is currently behind
the national target to screen 70% and 80% of the eligible population for both breast and
cervical screening respectively; therefore uptake for women with LD is much lower than
the national uptake benchmarks. A recent audit of breast screening uptake for women
with a LD in Salford172 revealed that:
 Only 47% of women who attended screening felt that they ‘fully understood’ the
reasons for screening.
 68% of the women who attended had the procedure explained by a support worker
or family. 20% did not recall being given any information.
 Only a small number of women had been given information in an ‘easy read’
format which seemed to have been prepared by support workers.
Overall the most common reason for not attending appears to be that the support worker
believed the client would not tolerate the procedure (either becoming agitated or
frightened). The audit report suggests that it is possible that uptake could be improved
by helping the women to better understand the procedure. However it in some cases it is
possible that the distress caused by attending screening may outweigh the potential
benefits. The audit report made the following recommendations:
1. Easy read information including pictures and diagrams should be given to women
over 50 to help explain why breast screening is carried out and what the procedure
involves. This may help increase understanding and reduce fear of the procedure,
thereby increasing uptake of invitations.
2. An information leaflet titled ‘An Easy Guide to Breast Screening’ has been
produced by the NHS screening service for women with a learning disability. This
does not appear to have been used in the majority of cases and may help
understanding about breast screening uptake. This leaflet should be available to
women over 50 and their support workers. A picture book called ‘Looking After My
Breasts’ for women with learning disabilities explains this in more detail and is
available from the Royal College of Psychiatrists. It would be very useful if a copy
of this was available within the team.
3. The results showed that there were some misunderstandings amongst support
workers regarding the accessibility of breast screening for wheelchair users. Some
women did not go for breast screening due to support workers believing they
would not understand. It is not clear what their level of understanding was. Support
168
Davies N, Duff M (2001) Breast cancer screening for older women with intellectual disability living in community group
homes. Journal of Intellectual Disability Research, 45, 253-257
169
Piachaud J, Rohde J (1998) Screening for breast cancer is necessary in patients with learning disability. British Medical
Journal, 316, 1979
170
Djuretic T, Laing-Morton T, Guy M, Gill M (1999) Concerted effort is needed to ensure these women use preventive
services. British Medical Journal, 318, 536
171
Data for the period 2009/2010
172
Shankland, J (2011) An Audit of Breast Screening Uptake in Women with a Learning Disability. NHS Salford.
63
Learning disabilities in Salford: A Health Need Assessment 2011
workers may benefit from additional training regarding the accessibility of breast
screening, assessing understanding and capacity to consent to the procedure.
4. The audit should be repeated after the recommendations have been implemented.
There is no existing local data on the uptake of bowel cancer screening although
collection of this information is anticipated to start next financial year (2011/2012).
Screening for bowel, breast and cervical is already important but will become
increasingly significant in the early diagnosis and treatment of cancer as the LD
population ages and there is a corresponding increase in the incidence of cancer in
adults with LD. The importance of cancer screening and increasing uptake is further
enhanced locally as cancer, along with CVD, is the leading cause of death in the local
LD community.
6.2.2.2 Non Cancer Screening Programmes
There is no existing data on the uptake of screening by the LD population for other
population based screening programmes including the established Diabetic Retinopathy
Screening Programme and the Chlamydia Screening Programme. Furthermore, there is
no data regarding uptake for either of the newly introduced Abdominal Aortic Aneurysm
(AAA) and NHS Health Check screening programmes, despite the increased risk of
disease in the LD population.
6.2.2.3 Health Checks
Annual general health checks have been shown to be effective in identifying health
needs, previously unrecognised and untreated illness and providing opportunities for
preventative interventions suggesting that health checks represent a ‘reasonable
adjustment’ to the difficulties in identifying and/or communicating health need
experienced by people with LD173.
In response to recommendations in national reports, government policy requires that
Primary Care Trusts offer all GP practices the opportunity to participate in a Directed
Enhanced Service (DES) that remunerates them for providing annual health checks for
people with learning disabilities. Health checks are designed to be part of the overall
process for health action, and person centred, planning. In Salford, the DES was tailored
to the local population and offered to GP’s as a Locally Enhanced Service (LES). Before
undertaking the health checks, primary care staff are required to undertake learning
disability awareness training provided by health facilitators and/or community learning
disability team members in partnership with self advocates174. The data from these
health checks helps to build a local picture of health need for people with LD. The
information from an individual’s health check also informs the health action plan for the
individual. This is developed with the individual with support from primary care, the
community LD Service or their carers.
Since its implementation in 2008/2009, 100%175 of GP’s in Salford have signed up to the
LES and 100% of GP Practices have systems for identifying and recording patients with
173
Robertson J, Roberts H, Emerson E. Health Checks for People with Learning Disabilities: Systematic Review of
Impact. Durham: Improving Health & Lives: Learning Disability Observatory, 2010.
174
NHS Employers and British Medical Association (2008) Clinical directed enhanced services (DES) guidance for GMS
contract 2008/09: Delivering investment in general practice
175
3 of the 54 GP Practices were not in a position to deliver the LES and therefore the contract was given to the ‘Health
For Life’ team (PCT Provider Arm) so that no were patients missed.
64
Learning disabilities in Salford: A Health Need Assessment 2011
LD. To date 474 health checks have been completed representing 57.6% of the LD
population ‘known to services’, providing an opportunity to identify unidentified health
needs and to inform population health need. The introduction of the health checks has
greatly enhanced the information available locally about people with LD.
However, whilst the introduction of the health checks has been shown to be effective in
identifying unmet health needs It is apparent from the health check data available locally
that data recording is incomplete, a number of relevant data (e.g. bowel screening, flu
vaccination, retinal screening) are not being collected and information regarding onward
referral is unclear.
Attempts to extend the data collected during the health check are underway and
discussions have taken place with the Data Quality Team to adapt the current LD data
extraction tool so that it includes missing fields. Clarity around the completeness of data
is however urgently required as this may merely be the product of coding issues or more
seriously insinuate training and assurance issues. This uncertainty in the data
challenges the authenticity of the data and the ability to draw conclusions regarding
population health need. Most importantly however is the effective use of the health
checks as a preventative and diagnostic mechanism for identifying unmet health need.
From the data available it is unclear if the information collected during the check is used
to promote healthy behaviour and onward referral to services. Rectifying these issues
would undoubtedly improve the LES maximising the opportunities afforded by the
checks.
Furthermore, whilst providing financial incentives to GPs may influence practice,
incentives based on general population health need may be insufficient to improve the
quality of care for people with LD176. A recent study suggests that a more targeted
approach focusing on incentivising LD specific issues along with the current Quality and
Outcomes Framework targets might be more appropriate in primary care for improving
the health for people with LD than an extensive learning disability health check177.
In addition, despite local efforts to tailor the LES, the checks are predominantly targeted
at those patients known to have a learning difficulty and therefore typically concentrate
on those with a moderate or severe LD. As a consequence the needs of people with mild
LD are poorly understood.
6.3
PRIMARY HEALTH CARE
Primary health care is essential to ensure adequate health surveillance for all people
with LD, who have both ordinary needs for primary care and also special needs relating
to the increased rates of certain conditions. Access to primary medical care has a
significant impact on how frequently and appropriately people with LD access wider
services.
Virtually all people with LD are now living in the community and depend on GPs for
primary health care needs. People with learning difficulties visit their GP with similar
frequency to the non LD population however given the evidence of greater health need it
would be expected that people with learning difficulties should be accessing primary care
176
Chauhan U, Kontopantelis E, Campbell S, Jarrett H, Lester H. Hypothesis: Health checks in primary care for adults
with intellectual disabilities: how extensive should they be? Journal of Intellectual Disabilities Research 2010;54:479-86.
177
Chauhan U. et al (2010) Health checks in primary care for adults with intellectual disabilities: how extensive should they
be? Journal of Intellectual Disability Research 54 (6): 479-486
65
Learning disabilities in Salford: A Health Need Assessment 2011
services more frequently than the non LD population. For example, comparison of
general practitioner consultation rates to those of patients with other chronic conditions
suggests that primary care access rates for people with LD are lower than might be
expected178.
Difficulties accessing primary care services can result in conditions going undiagnosed
and/or untreated. The failure to obtain timely treatment can result in more difficult to treat
symptoms or hospital admissions that could have been prevented. Collaboration
between GPs, primary health care teams and specialist services for people with LD is
generally regarded as poor179 however anecdotal evidence locally suggests that this is
less of an issue in Salford.
At a recent consultation event in Salford, the majority of adults with LD reported being
happy with their GP. However when asked to make additional comments regarding their
health; half of the comments were about people feeling unhappy with their doctor whilst
the other comments were about doctors treating people in the way they want to be
treated.
Systems need to be in place to ensure that people with LD access a range of services to
maintain good health, such as GP out of hours services, primary dental services,
podiatry, community pharmacy and primary ophthalmic services so that they receive the
most appropriate care in the right setting180. However, despite improved identification
and recording of adults with LD in general practice, information on the use of other
community primary care services is poor. This limits opportunities to ensure that
reasonable adjustments are made that facilitate diagnosis and treatment as well as
inhibiting information to inform effective commissioning. Crucially more effective
interventions in primary care may reduce the disproportionately high use of secondary
care services by those with LD.
6.3.1 Health action plans
Health action planning assists in identifying the health needs of adults with LD and
details the actions needed, and the services required, to maintain and improve health181.
Valuing People had a target that all people with LD had a health action plan by June
2005. As of March 2010, 75% of people with LD and ‘known to services’ in Salford had a
health action plan.
6.3.2 Health facilitation
Health facilitation is still in its infancy and there is lack of evidence on the impact.
However research suggests that health facilitators are a recognisable contact for both
carer and patient, assisting to overcome any potential barriers182 183. There is also
178
Felce D, Baxter H, Lowe K, Dunstan F, Houston H, Jones G, et al. The Impact of Checking the Health of Adults with
Intellectual Disabilities on Primary Care Consultation Rates, Health Promotion and Contact with Specialists. Journal of
Applied Research in Intellectual Disabilities 2008;21:597-602.
179
Thornton C. Effective health care for people with learning disabilities: a formal carers’ perspective. Journal of
Psychiatric & Mental Health Nursing 1999;6:383-90.
180
Department of Health (2009) World class commissioning for the health and wellbeing of people with learning disabilities
181
Department of Health (2002) Action for health: Health action plans and health facilitation detailed good practice
guidance on implementation for learning disability partnership boards
182
Straetmanns, J. et al (2007) Health problems of people with intellectual disabilities: the impact for general practice
British Journal of General Practice 57(534): 64-66
183
Alborz, A. et al (2005) Access to health care for people with learning disabilities in the UK: mapping the issues and
reviewing the evidence Journal of Health Services Research and Policy 10(3): 173-182.
66
Learning disabilities in Salford: A Health Need Assessment 2011
evidence to suggest that a primary care facilitator, working with GP’s and practice nurses
can increase screening and the detection of health problems184.
In Salford there is a dedicated strategic healthcare facilitator. The postholder has been
pivotal in driving forward improvements in services across the health system locally,
supporting the Staying Healthy Task Group, of the LD Partnership Board, to deliver the
recommendations outlined in the Michael Report. Adopting a co-coordinating role the
post is responsible for working with organisations and services to improve the health of
local people with LD. This includes designing and overseeing training, ‘Disable me Not’,
for staff across the health system and social care as well as working with commissioners
and providers to ensure effective data recording and service provision for adults with LD.
6.4
SECONDARY HEALTH CARE
In the UK an estimated 26% of people with LD are admitted to general hospital every
year, compared with 14% of the non LD population185. Adults with LD have an increased
attendance and admittance to acute general hospitals due to the higher prevalence of
health conditions described in Chapter 4 as well as delayed reporting and or diagnosis of
illness.
Several high profile reports and research studies suggest that within acute health care
settings there is evidence of institutional discrimination towards people with LD due to
limited knowledge about the needs of people with LD186. The issues that people with LD
experience in secondary care187 are reported as:
 inflexible hospital care processes (appointment systems, Choose and Book not
taking into account the need for reasonable adjustments and waiting times)
 knowledge, attitudes and communicative style of staff
 physical environment not being accessible
There is a lack of published research evaluating interventions and initiatives to improve
hospital care for people with LD. Evidence is limited to case studies, monitoring of data
on the type of support provided, observations, the use of pre and post questionnaires
with small sample sizes or qualitative feedback from stakeholders after an initiative has
been put in place. The Care Quality Commission recently produced an indicator on
‘access to healthcare for people with a learning disability’ for acute and specialist trusts
(see Chapter 3). This seeks to respond to the recommendations made in ‘Healthcare for
All’ specifically around the collection of data and information necessary to allow people
with a learning disability to be identified and the arrangements trusts have in place to
ensure the views and interests of people with learning disabilities and their carers are
included in the planning and development of services.
In response Salford Royal Foundation Trust (SRFT) has been monitoring its progress to
improve acute care for adults with LD, reporting to the Trust Board on a monthly basis.
Other activity to improve care for adults with LD includes the collection and reporting on
CQUIN indicators to improve the recognition of people with LD and to inform service
commissioning and planning (See Chapter 3). SRFT report that complaints and incidents
184
Martin, D. et al (1997) Health gains through health checks: improving access to primary health care for people with
learning disability Journal of Intellectual Disability Research 41(5): 401-408
185
Band, R. (1998) The NHS: Health for all? People with learning disability and health care Mencap, London
186
Mencap (2007) Death by Indifference
187
Backer, C. et al (2009) Access to secondary healthcare for people with intellectual disabilities: A review of the
Literature Journal of Applied Research in Intellectual Disabilities 22(6): 514-525
67
Learning disabilities in Salford: A Health Need Assessment 2011
in relation to adults with LD have decreased and that the relationship between the LD
service and the acute trust has improved.
At the time of this report the SRFT CQUIN data was not available. The CQUIN data will
however provide vital information to enhance the picture of health need for adults with
LD in Salford as well as crucial data on use of services to inform commissioning. This
will be particularly important in reducing unnecessary acute admissions and improving
community primary care services.
6.4.1 Acute liaison nurse
The role of acute liaison nurses (specialist learning disability nurse working in general
hospitals) is still in its infancy and there is lack of information on their impact. The focus
of the role is to provide advice and support to enable acute hospitals to recognise and
address the particular needs of people with learning difficulties that require hospital
services. They liaise with community services including primary care learning disability
health facilitators to aid smooth admission and discharge, encourage constructive
dialogue with the patient and family members and provide support and training to front
line staff. A recent evaluation of a service in Scotland188identified three key areas of
impact by acute liaison nurses:
 Clinical care – the provision of advice and support to general hospital staff in the
care of people with learning disabilities, including supporting staff to make
adjustments to routine practice and promoting effective communication across
complex care systems and co-ordinating the care journey.
 Education – provision of education and development sessions to enhance the
knowledge, skills and attitudes of hospital staff.
 Strategic development – being a positive influence on developing and improving
overall services.
In addition, an evaluation of acute liaison nurses in North London189 found that the posts
contributed to:
 a positive effect on individual experiences
 a reduction in hospital stays
 improvements in patient safety
In Salford; SRFT employ an Assistant Director of Nursing (Safeguarding: Children &
Adults) who works with the LD service and liaises with other community providers. This
post has been influential in seeing people are treated with dignity and respect and that,
both on an individual and organisational level, support improves.
6.5
SPECIALIST LD SERVICES
Specialist services are those which respond to the health needs directly relating to, or
arising from, a person’s learning disability. Three major factors are creating change in
the demand for specialist learning disability services; these are190:
 Increased numbers of people with LD, predominantly because people are living
longer needing additional support around illnesses linked to old age, in particular
188
MacArthur, J. and Brown, M. (2009) Learning Disability Liaison Nursing Services in South East Scotland: A mixed
methods impact and outcome research study NHS Lothian Health Services Research Programme
189
Pointu, A., Young, J. and Walsh, K. (2009) Improving health with acute liaison nursing Learning Disability Practice
12(5): 16-20
190
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
68
Learning disabilities in Salford: A Health Need Assessment 2011
dementia.
 Changes in the demographic profile, with increased numbers of people with
profound and multiple learning disabilities requiring input from specialist health
professionals. This particularly applies to young people.
 The increasing empowerment of people with LD and their families has resulted in
increased expectations and demand for better quality services located nearer to
their home.
Commissioning of specialist learning disability health services for people with learning
disabilities is currently the responsibility of Primary Care Trusts, although this will change
in the future. PCTs are expected to adopt a collaborative approach to commissioning
services, based on close working with local authorities and Learning Disability
Partnership Boards191. Salford has an excellent, longstanding and robust relationship in
relation to commissioning for LD services which is reflected in the delivery of services.
It has been suggested that given the importance of these services being strategically
commissioned in partnership with the local authority, it is inappropriate to use practice
based commissioning for specialist learning disability health services192. It is unclear how
the new commissioning consortia arrangements, which will replace PCT’s, will work with
local authorities to commission LD specialist and primary and secondary care services
for adults with LD in the future.
6.5.1 Specialist learning disability community services.
Community services were developed following the closure of long stay hospitals in the
1970’s. They employ a range of specialist learning disability staff that provide a range of
clinical services to meet the comprehensive mental and physical health needs of people
with learning disabilities193. A range of staff skills are required as part of learning
disability specialist health services to include (but not necessarily be limited to)194:
 learning disability nurses
 clinical psychologists
 psychiatrists
 physiotherapists
 speech and language therapists
 occupational therapists
 Art therapy
Specialist learning disability community health staff have an essential clinical and
therapeutic role to:
 support people and their families when their needs cannot be met by mainstream
services.
 support in the provision of longer term support for people who have complex and
continuing health needs.
 provision of emergency support in partnership with mental health colleagues.
191
Department of Health (2009) World class commissioning for the health and wellbeing of people with learning disabilities
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
193
O’Hara, J. (2000) Learning disability services primary care or mental health trust? Psychiatric Bulletin 24: 368-369
194
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
192
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Learning disabilities in Salford: A Health Need Assessment 2011
In addition they have the following complementary tasks of health promotion, health
facilitation, teaching and service development. A key role is to advise and support PCTs
and general practice in the development and delivery of the annual health checks,
supporting patients and family carers during this process195.The effectiveness of
specialist community services is relatively under-researched, although this model of care
has been criticised for bypassing mainstream primary care services196. In Salford
however the LD service provides integrated services that are well regarded by users,
carers and staff. Most recently the increasing number of young adults with complex
needs has increased demand for the services of Allied Health Professionals as a
consequence the Partnership Board has made several requests for additional
investment to meet demand.
There are three day centres operating in Salford; one of which provides support for
adults with profound learning difficulties. The other two centres, Craig Hall and St
Georges, adopt a community centre style approach and provide a range of activities for
service users.
6.6 SUPRA- SPECIALIST (TERTIARY) LD SERVICES
Supra-specialist (tertiary) learning disability services are for those adults with learning
disabilities with severe challenging behaviour and/or complex mental health needs.
People with learning disabilities and complex needs often experience particular problems
accessing health services197.
6.6.1 Inpatient services
There is a need for hospital beds for the assessment and treatment of a small number of
people with learning disabilities, such as those with mental illness, sensory impairments
or challenging behaviour. Appropriate community provision is needed to prevent delayed
discharge. The first national audit of specialist inpatient services for people with learning
disabilities carried out in 2007 identified that significant improvement in the quality of
care was needed in the majority of services for people with learning disabilities 198.A
subsequent audit shows that progress has been made and further recommendations are
outlined in Chapter 3 of this report.
To improve the quality of care the College Centre for Quality Improvement (CCQI) has
developed a standard based accreditation for inpatient services for adults with learning
disabilities199.
6.6.2 Services for offenders
People with learning disabilities are made vulnerable by the criminal justice process,
often experiencing personal, systematic and routine discrimination as they progress
through the criminal justice system, including prison200.
195
Primary Care Unlimited, Valuing People Support Team and Foundation for People with Learning Disabilities (2007)
Health checks – role of community learning disability teams
196
Bouras, N. and Holt, G. (2004) Mental health service for adults with learning disabilities. The British Journal of
Psychiatry 184: 291-292
197
Commission for Social Inspection, Healthcare Commission and Mental Health Act Commission (2009) Commissioning
services and support for people with learning disabilities and complex needs. National report of joint review
198
Health Care Commission (2007) A life like no other: A national audit of specialist inpatient healthcare services for
people with learning difficulties in England
199
Royal College of Psychiatrists and College Centre for Quality Improvement (2009) Accreditation for Inpatient Mental
Health Services – Learning disabilities (AIMS-LD). Standards for Adult inpatient learning disability units
200
Prison Reform Trust (2008) Prisoners’ voices: experiences of the criminal justice system by prisoners with learning
disabilities and difficulties Prison Reform Trust, London
70
Learning disabilities in Salford: A Health Need Assessment 2011
The Bradley report recommends improved screening and identification of people with
learning disabilities at the start of the offender pathway to facilitate the earliest possible
diversion of offenders from the criminal justice system, signposting to health and social
care services as appropriate. The national delivery plan of the Bradley report
recommends201:
 Provision of easier read materials.
 Developing skills and knowledge of frontline professionals to support them in
managing offenders with learning disabilities.
 Ensuring access to primary care services for offenders with learning disabilities,
including health checks and health action plans.
 Reducing re-offending by ensuring that offenders with learning disabilities better
understand the criminal justice system and the support that is available to them in
the community.
As described in Chapter 5; HMP Forest Bank located in Salford houses prisoners
from across Greater Manchester, although the number of resident prisoners with LD
is unknown. It is unclear if the prison is delivering the recommendations contained
within the Bradley Report; however work is underway to develop in reach mental
health services for prisoners with LD.
6.6.3 NHS campuses and similar accommodation
Government policy is that it is inappropriate for people with learning disabilities to live
within the NHS. This decision is based on a combination of the evidence regarding the
poor quality of people’s lives in NHS campuses and concern about the lack of rights
accorded to people in such settings202. It became a requirement of ‘Our Health, Our
Care, Our Say’ to close NHS campuses by 2010 and for these to be replaced by
appropriate housing and support, (and increased community specialist health care
infrastructure) so that no-one with a learning disability has their home in the NHS.
In Salford there are no longer any adults with LD living in either long stay hospitals or
NHS Residential Campuses; and there are discharge plans in place for people with LD
both in and out of district, and in both NHS and private sector hospital provision, whose
treatment is either complete, or nearing completion.
6.6.4 Continuing care
Some people may require health care for a long time and their health needs may be met
through primary care, in their own homes or in care homes. People with learning
disabilities should not be using NHS commissioned services for continuing care unless
their primary need is for healthcare rather than accommodation or other support,
identified by use of the National Framework for Continuing Care, which includes a
Decision Support Tool203.
It is not appropriate for people who challenge services to become the sole responsibility
of the NHS nor for intensive NHS continuing care be assumed to be the most
201
HM Government (2009) Improving Health, Supporting Justice. The National Delivery Plan of the Health and Criminal
Justice Programme Board
202
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
203
Department of Health (2007) The National Framework for NHS Continuing Healthcare and NHS funded nursing care
71
Learning disabilities in Salford: A Health Need Assessment 2011
appropriate service response. Best outcomes for people who challenge services can be
achieved through individually designed services rather than congregate settings based
on diagnostic or treatment label204.
6.6.5 Out of area placements
Nationally over 11,000 people with learning disabilities are supported in out of area
placements. This is over a third of all people with learning disabilities who are supported
in residential care and nursing homes. When the old institutions closed, some people,
particularly older people, did not move back ‘home’ and stayed out or area. Others who
are more likely to be placed out of area include those with205:
 Challenging behaviour
 Autistic spectrum disorders
 Mental health needs
 Complex health needs
 Complex epilepsy
 People who may offend
The Department of Health issued a policy clarification note which emphasised the need
to ensure that people with ‘forensic’ needs or challenging behaviour were not placed
miles away from home out of a need for specialist help206.
Absence of or not enough specialised services locally for people with complex health
and behavioural needs tend to be the reason for out of area placements. Such provision
is not only expensive in terms of financial resources but also in terms of the human and
social cost and has a negative impact on the well-being of clients, families and carers.
Money spent on out of area placements cannot be reinvested into the local health and
social care economy. Where people are placed away from their own locality it is
important that the service is regularly reviewed to ensure that it is still appropriate for that
individual207.
The LD Service in Salford has been successful in seeing that services meet least
restrictive practice criteria and are continually planning for the return to Salford of out of
Salford placements. This has been developed through recommendations in the Mansell
Report particularly around clinical management and recognising the role of psychology,
psychiatry and the community team as pivotal to co-ordinating person centred services
and capacity building services through staff development. Overall there have been more
people returning to Salford than leaving.
6.7
End of Life and Palliative Care
Research into the palliative care needs of people with learning disabilities is limited208.
People with learning disabilities may experience difficulties in accessing end of life care
204
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
205
Emerson, E. and Robertson, J. (2008) Commissioning person-centred, cost effective, local support for people with
learning disabilities Social Care Institute for Excellence
206
Department of Health (2004) Commissioning services close to home: Note of clarification for commissioners and
regulation and inspection authorities
207
Department of Health (2007) Commissioning Specialist Adult Learning Disability Health Services. Good Practice
Guidance
208
Tuffrey-Wijne, I. et al (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or
other life-limiting illness: A review of the literature and available resources Journal of Applied Research in Intellectual
Disabilities 20(4): 331-344
72
Learning disabilities in Salford: A Health Need Assessment 2011
that meets their specific needs. This may be due to failure to diagnose advanced disease
early enough to plan and prepare for end of life care, and to communication difficulties
with healthcare professionals209. It has been proposed that communication models
designed to assist healthcare professionals in breaking news of serious illness and poor
prognosis do not meet the needs of people with learning disabilities210. This results in the
risk of excluding this group of people from engaging in advance care planning and
making informed choices for their future care at the end of life. A best practice guide
provides guidance for health and social care professionals, service developers and
providers to ensure the best quality of end of life care for people with LD.
The Strategic Health Care Facilitator for LD is currently working with commissioners to
improve the support provided to adults with LD who require end of life and palliative care
in Salford.
6.8
Carers and families
In the 1998 Welsh Health Survey, 7.5% of adults reported that they were carers and one
in ten of those cared for had a learning disability. Caring for a person with learning
disabilities can place considerable strain on carers and families, having an impact on
emotional wellbeing, financial resources and relationships. In Salford more people
continue to live at home with parents/carers than in the general population.
Carers of adults with learning disabilities report 40% more health-limiting problems than
the general population. This is of particular importance as the number of elderly carer’s
increases. The local authority (LA) has identified 80 people with LD that live with older
family carers (>65 years), and at least 1 carer with LD. A significant minority of people
with learning disabilities who live in the family home have carers over the age of 70. In
this instance both the carer/s and adult with LD are particularly vulnerable to health
inequalities.
209
Keenan, P. and Macintosh, P. (2000) Learning disabilities and palliative care Palliative Care Today 9(3): 11-13
McEnhill, L. (2008) Breaking bad news of cancer to people with learning disabilities British Journal of Learning
Disabilities 36(3): 157-164
210
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Learning disabilities in Salford: A Health Need Assessment 2011
7.
CONCLUSIONS
MAIN MESSAGES

There are many national policies and best practice documents that highlight the
health issues of adults with learning disabilities. In recent years, LD has achieved
a high policy prominence at a national and regional level.

Demographic changes mean that the LD population is increasing, shifting and
emerging. Within this diverse population group; older people, people from ethnic
minorities, those with severe and complex needs and those with mild LD present
particular and differing needs.

The health of people with LD has improved and life expectancy has increased
however both quality and quantity of life remain significantly lower than the non
LD population. Local data indicates that Cancer and CVD are the leading cause
of death amongst people with LD in Salford, followed by diseases of the nervous
system and respiratory disease.

The LD population are particularly vulnerable to both health and social
inequalities, which create and exacerbate poor health.

There is long standing commitment to improving the health of people with LD in
Salford. However this is neither systematic in approach nor strategically coordinated.

There are a number of barriers to services and often need does not correspond
with demand.

There are a number of areas where action can be enhanced locally.

This HNA provides evidence of the current and future significance of health need
amongst people with LD; necessitating continued partnership action and
investment.
Analyses of data, policy, evidence, service information and consultation, conducted for
this health needs assessment, have led to the following conclusions.
1. Policy and evidence acknowledge the many, increasing and often unmet health
needs of people with LD which are recognised, in part, as the product of societal
barriers.
In the last few years it has become increasingly recognised that people with learning
disabilities face many types of health and social inequalities as highlighted in this report.
National policy, reports and research suggest that when compared to the rest of the
population, people with learning disabilities have:
 Lower life expectancy
 Different causes of death
74
Learning disabilities in Salford: A Health Need Assessment 2011






Higher levels of unrecognised and unmet physical and mental health needs
Barriers to accessing health services
Communication difficulties
Different lifestyle choices and environment issues
Different patterns of health need and more complex health need
Difficulties accessing end of life care that meets specific needs
The health and health needs of people with learning disabilities are now a high priority.
As a consequence there is a national policy, which outlines recommendations for
improving the health of people with LD, the implementation of which is monitored at both
regional and national level. This commitment is reflected locally with integrated
commissioning and delivery of services for people with LD; a strong LD Partnership
Board and good working relationships between organisations. However this commitment
is not echoed in key health strategies and plans.
The evidence base regarding the nature and scale of health needs and strategies for
addressing inequalities is small due to the lack of high quality research for this
population group.
2. Demographic changes mean that the LD population is increasing, shifting and
emerging. There are also a number of priority sub groups from within this
diverse population group.
The size, structure and spectrum of the LD population is varied as a result of a series of
cultural, medical and technological advances. This inevitably dictates varied health need.
In Salford there are over 4000 adults with LD; the majority of whom have a mild learning
difficulty and are largely unknown to services. Approximately 20% of all people with LD
have a moderate to severe learning difficulty and are very dependent, and known to,
health and social care services.
The number of people with LD is anticipated to increase by 14% by 2021 resulting in a
corresponding annual increase in service demand estimated between 1% and 8%.
Changes in the population are the result of decreased mortality particularly for those with
severe and complex needs; increased life expectancy, changes in fertility in the last
twenty years and the ageing of the baby boom generation for whom incidence of LD is
higher.
The largest birth cohort include those aged 25 – 44 years with increasing numbers of
people entering adulthood with complex, physical needs. In addition the LD population is
increasingly ageing; the product of improved health and technology. As a consequence
the needs of these groups are poorly understood and there is limited experience of
dealing with the health demands of adults with complex physical needs and older people
with LD. Although the incidence of LD is higher amongst certain minority ethnic groups
there is very limited information about the ethnicity of people with LD locally.
As a result there is limited knowledge on the health needs of adults with learning
disabilities from Black and minority ethnic communities, older people, those with
profound and multiple learning disabilities and people with mild LD. This has an impact
on the conclusions about the health needs of people with LD and means that needs are
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Learning disabilities in Salford: A Health Need Assessment 2011
different and diverse between the various sub groups of the LD population. These
groups should therefore be considered key priorities.
3. The health of people with LD has improved and life expectancy has increased
however both quality and quantity of life remain significantly lower than the non
LD population.
The health of people with LD is improving and life expectancy is increasing. However
there is clear evidence that people with a learning disability have poorer health than the
rest of the population and are more likely to die prematurely. As a population they
contribute significantly to the gap in health inequalities within Salford.
National data indicates that the causes of death for people with a learning difficulty are
different to that of the non LD population. Nationally respiratory disease (linked to
pneumonia and aspiration) followed by cardiovascular disease (related to congenital
rather than ischaemic heart disease) are the leading causes of death for people with LD.
Learning disability is not always recorded on death certificates therefore information on
the causes of death for adults with LD is not routinely available. As part of this HNA an
ad hoc analysis of mortality for people with LD in Salford revealed that the leading
causes of death are cancer and CVD, followed by diseases of the nervous system and
respiratory disease. These causes of death are more reflective of the general, non LD
population; however this data also indicates that the causes of death vary across the
Salford LD population according to both age and LD severity. For those aged under 65
years, the cause of death is more likely to be related to having a learning disability, with
both the cause and age of death indicative of a more severe LD. Conversely, amongst
those aged over 65 cancer and CVD were most prevalent; this increased life expectancy
and cause of death would be more likely to be associated with a less severe LD.
National evidence suggests that epilepsy, gastro-oesophageal reflux disorder, sensory
impairments, osteoporosis, schizophrenia, dementia, dysphagia, dental disease,
musculoskeletal problems, accidents and nutritional problems are all commonly
experienced with incidence much in excess of that in the non LD population.
In Salford epilepsy is particularly prevalent amongst the LD population. Information from
national evidence suggests that respiratory disease, CVD and stroke are especially
common; this is not however echoed in the existing available local data. This may be
due to misdiagnosis or diagnostic overshadowing. For example national evidence
indicates that mental health problems are particularly prevalent in the LD population but
local data suggest that just 6% of the Salford LD population are affected.
Information on health need locally is incomplete therefore it is difficult to make definite
conclusions from the available data. The relevance of other conditions as well as the
impact of disease on a changing population demographic (e.g. cancer incidence
increases with age) should not therefore be overlooked. The increased independence of
the LD population is also likely to increase the incidence of lifestyle related conditions.
This HNA has identified a number of priority groups who have increased health need
either now or in the future. These groups have very differing health needs and any
strategy and commissioning plans will therefore need to acknowledge the heterogeneity
within the LD population and plan appropriately. These include; adults with severe and
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Learning disabilities in Salford: A Health Need Assessment 2011
profound LD, older adults with LD, adults with LD from ethnic minority groups and adults
with mild LD.
Older adults
Older adults with LD represent a key priority group. Adults with Down’s syndrome should
also be included owing to the high incidence of early onset dementia, especially
Alzheimer’s disease. The ageing process appears prematurely, and from middle age
onwards people with Down’s syndrome can present as a medically very vulnerable
group.
Given the improvements in life expectancy as discussed in Section 4.1, the number of
older people with LD is increasing. As a consequence age-related illnesses that
commonly occur in older age, such as cancer, CVD and dementia and which were
previously uncommon in the LD population, now need to be considered. The incidence
of cancer and CVD, which is currently lower than the non LD population incidence, is
expected to increase as the LD population augments, ages and is more independent.
The physical challenges of old age also represent an additional complication for people
with LD as already existing sensory impairments are compounded by ageing increasing
the risk of falls and accidental injury. Adults aged over 60 with learning disabilities are
also more likely to face barriers to services; less likely to receive an accurate diagnosis
and treatment and to access a range of health services compared to younger adults with
learning disabilities211.
Furthermore, the number of older adults with LD has in the past been relatively small
therefore the needs and management of older people with LD are largely unknown and
services have very limited experience of supporting this group. This makes
commissioning and delivering services a new and challenging issue.
People from ethnic minorities with LD
People from minority ethnic groups experience health inequalities, with some groups
particularly vulnerable. Therefore having a learning difficulty for people from ethnic
minority groups further intensifies the health inequalities experienced. Moreover as there
is very little information on the ethnicity of people with LD; they are difficult to identify and
consequently to target. This group therefore represent an important priority.
People with mild LD
Although the life expectancy of people with mild LD is greater than that of people with
moderate and severe LD it remains shorter than the non LD population. Furthermore,
this group represents the largest sub group within the LD population (80%); therefore
contributing significantly to the gap in health inequality in Salford. Importantly however
their needs are poorly understood. Whilst the quantity and quality of life for people with
moderate and severe LD is worse than for those with mild LD; their health needs are well
researched by comparison and they are often in contact and or supported by health and
social care services. By contrast people with mild LD are effectively invisible, this is in
part a result of difficulties in identifying and diagnosing a mild learning disability.
211
Cooper SA. Deficient health and social services for elderly people with learning disabilities. Journal of Intellectual
Disability Research 1997;41:331-38.
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Learning disabilities in Salford: A Health Need Assessment 2011
There is very little information, both nationally and locally, on the health of people with
mild LD although the causes of death and morbidity experienced are thought to replicate
those of the non LD population. Moreover people with mild LD are thought to be
extremely vulnerable to social inequalities, much more so than people with moderate or
severe LD and as a consequence extremely dependent on social services and or
prevalent within the criminal justice system. They are also more likely to smoke, use
alcohol and drugs and have poor sexual health.
Adults with mild LD are therefore an important priority group in terms of both the LD
population and reducing the gap in health inequalities within Salford.
Adults with Severe and Profound LD
Health outcomes are worst for people with severe and profound learning difficulties with
life expectancy considerably shorter than that of the non LD population. These people
often have complex physical needs. Advancing medicine and technology has enabled
people, who previously would not have, enter adulthood. As a consequence there are
more adults with such needs. Much like older adults with LD; services have limited
experience understanding and managing the needs of this group.
Although they are a small group in number, their needs are vast and the number of
people increasing. They are therefore an important priority group.
4. The LD population are particularly vulnerable to social inequalities which create
and exacerbate poor health.
Health is influenced by a range of factors. Adults with LD are particularly vulnerable to
the social determinants of health and typically experience poor housing conditions,
poverty, unemployment, discrimination, unhealthy lifestyle, social exclusion/isolation and
crime. These all have an adverse effect on health, contributing to the development of
health issues and or exacerbate existing health problems.
In Salford the majority of people with LD and known to services (e.g. those with either
moderate or severe LD) live in areas of deprivation and are unemployed. People with LD
also report experiencing loneliness as they are often isolated living with family, or in
independent and or supported, accommodation on their own. Adults with LD are also
more vulnerable to being a victim of crime, particularly hate crime. There are also
considerable numbers of offenders (30%) who have a learning difficulty. There is
however no current processes in place locally to identify those adults that come into
contact with the criminal justice system.
Although people with LD are less likely to smoke, drink alcohol and use drugs than the
non LD population the increased independence of people with LD has the potential to
increase the prevalence of unhealthy lifestyles and subsequently lifestyle related
disease. Already there is evidence that the number of obese people with LD greatly
exceeds that in the non LD population. Conversely there are also greater numbers of
underweight adults with LD compared to the rest of the population. There is currently an
incomplete and unrepresentative picture of health need regarding the lifestyles of people
with LD as local information on substance use, alcohol and sexual health is limited.
People with learning disabilities often find it difficult to recognise, report and describe
symptoms of illness. Crucially, limited communication skills may reduce capacity to
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Learning disabilities in Salford: A Health Need Assessment 2011
convey identified health needs effectively to others. A number of high profile cases
referenced within the policy literature recognise communication difficulties as a critical
factor in the unnecessary and premature death of a number of adults with LD. In most
cases poor management and the limited awareness of professionals, with regard to the
communication difficulties of people with LD, was implicated; delaying diagnosis and or
effective management of pain and resulting in diagnostic overshadowing. In Salford 104
people with LD are known to have communication difficulties, the majority of which (96)
are severe in nature. Currently, there is no consistency in the use of aids to
communicate with adults with learning disabilities across all services in Salford.
5. There is long standing commitment to improving the health of people with LD in
Salford and this has resulted in considerable partnership working. However this
is neither systematic in approach or strategically co-ordinated.
There is long standing partnership commitment to improving the health of people with LD
in Salford. This is reflected in the partnership between NHS Salford and Salford City
Council at both strategic and delivery levels. However, despite this well established
relationship and commitment there is limited reference to adults with LD, and how
improving the health of this population group will help to reduce inequalities, in a number
of key partnership strategies and plans. There is no specific reference to people with LD
in the PCT 5 Year Plan; whilst the health needs of adults with learning disabilities are not
adequately reflected in the Joint Strategic Needs Assessment (JSNA).
The absence of direct reference in overarching PCT and Council Strategy is also evident
in some key health strategies including the Tobacco Control Strategy; the Alcohol
Strategy; the Cancer Strategy; the GM & Cheshire Cardiac and Stroke Network Strategy;
the Salford Mental Wellbeing Strategy; or the Salford Oral Health Strategy. There is
some very limited reference to adults with LD in the Obesity Strategy and a separate
sexual health strategy specifically for people with learning difficulties.
There is also an over reliance, rather than whole systems approach, on the LD
Partnership Board to deliver the health related recommendations included within Valuing
People Now. The achievements of the LD Partnership Board have been considerable
but have been restrained by the lack of systematic drive and co-ordination.
The partnership commitment does not therefore translate into strategic policy direction.
Moreover, there is no existing LD strategy for Salford and whilst policy and evidence
advocate this approach, emphasising the importance of mainstream commissioning for
adults with LD, the lack of inclusion within existing partnership strategies represents a
key risk. Ad hoc service developments for people with LD within mainstream services
have been achieved at an operational level reliant on the commitment of a few dedicated
individuals rather than via coordinated and strategic direction.
This suggests that action to improve the health of people with LD is not systematic
enough in Salford and that, despite considerable improvement, commissioning for the
health needs of people with LD is neither inherent, nor explicit, to mainstream services.
This may increase the health inequalities experienced by adults with learning difficulties.
It is also important to acknowledge that as the pattern of health need and causes of
death differ for people with LD, most current policies and healthy lifestyle initiatives will
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Learning disabilities in Salford: A Health Need Assessment 2011
widen rather than close the health inequality gap212. The most effective healthy lifestyle
initiatives for people with learning disabilities will therefore be those that target their
leading causes of ill health and death.
6. Access to all health services for people with LD is problematic. There are a
number of barriers to services and often health need does not correspond with
demand.
Although people with learning disabilities have a greater variety of healthcare needs
compared with the non LD population, many needs are unrecognised and unmet. This is
reflected in the high prevalence of certain conditions which is not mirrored by demand for
services. It has been argued that the poorer health of people with LD results, in part,
from a number of organisational barriers213 214 215 216 . These include:
 scarcity of services;
 physical barriers to access;
 failure to make ‘reasonable adjustments’ in light of the literacy and communication
difficulties experienced by many people with learning disabilities;
 variability in the availability of interpreters for people from minority ethnic
communities;
 ‘diagnostic overshadowing’ (symptoms of physical ill health being mistakenly
attributed to either a mental health/behavioural problem or as being inherent in the
person’s learning disabilities);
 disablist attitudes among healthcare staff.
National evidence and local experience also indicate that people working within health
services lack the knowledge about, and awareness of, the health needs of people with
LD. People with LD also report experiencing unhelpful and or negative behaviour
towards them from clinical and health staff. Attitudes affect the extent to which concerns
are treated seriously or dismissed, symptoms are explored and opportunities to carry out
screening or medicine reviews are taken up or missed. Diagnostic overshadowing is
frequently reported, with physical or psychological symptoms being inappropriately
attributed to the learning disability. Historical and cultural provision for people with LD
has also led to the incorrect assumption that the health needs of people with learning
difficulties are met by specialist LD services. Furthermore, for many community services
there is very little information on the number and type of services used by people with
LD.
Health Promotion & Screening
There is currently no specific reference to people with LD, in all but a few public health
strategies in Salford and there is no LD specific health strategy. Therefore there is
limited mainstream, or directed, targeting of public health strategies towards the LD
212
Cooper, S. et al (2004) People with intellectual disabilities. Their health needs differ and need to be recognised and
met British Medical Journal 329: 414-415
213
Giraud-Saunders A. Equal access? A practical guide for the NHS: Creating a Single Equality Scheme that includes
improving access for people with learning disabilities. London: Department of Health, 2009.
214
Kwok H, Cheung PWH. Co-morbidity of psychiatric disorder and medical illness in people with intellectual disabilities.
Current Opinion in Psychiatry 2007;20:443-49.
215
Alborz A, McNally R, Glendinning C. Access to health care for people with learning disabilities in the UK: mapping the
issues and reviewing the evidence. Journal of Health Services Research & Policy 2005;10:173–82.
216
Alborz A, McNally R, Swallow A. From the Cradle to the Grave: a literature review of access to health care for people
with learning disabilities across the lifespan. London: National Co-ordinating Centre for NHS Service Delivery and
Organisation, 2003.
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population even where there is clear evidence and health need (e.g. LD population
prevalence exceeds non LD prevalence) to do so.
There are also few specific healthy lifestyle initiatives for this population group and very
little information on the numbers of adults with learning disabilities accessing lifestyle
interventions. There are however several examples of good practice locally including the
Self Care Lifestyle Programme and the Health Walks initiative. These have however
been sporadic and locality based rather than strategic and co-ordinated.
There are obviously a number of particular challenges to ensuring effective health
promotion for adults with LD. Managing a healthy lifestyle is particularly challenging for
people with LD. Adults with LD are often not in control of food choices and preparation;
have limited mobility and access to physical activity can be restricted. Furthermore
people with learning difficulties find it difficult to understand the importance of a healthy
lifestyle, whilst health education materials and messages are often not presented in LD
accessible formats.
Information on the uptake of all health screening programmes in Salford by adults with
LD is limited. From the available data it is apparent that, like national experience, local
uptake of breast and cervical screening is considerably lower than that for the non LD
population. In Salford, the proportion of eligible adults with learning disabilities
participating in breast cancer screening is 150% lower than the rest of the population
and 44% lower for cervical screening. There is no information on the uptake of bowel
screening; diabetic retinopathy screening, chlamydia screening or on the use of the
newly introduced AAA screening, and the NHS Health Check programme. This is despite
evidence which shows that in some instances the risk for people with LD is elevated
(DRS and AAA) compared with the non LD population.
Information on the uptake of immunisations is also unknown. In particular, there is no
data on the uptake of the annual flu vaccination, nor targeted campaigns to increase
attendance, despite respiratory disease being the leading cause of death for people with
LD.
Health Checks
Since 2008/2009 primary care has been incentivised, via a LES, to provide an annual
general health check for adults with LD as per national guidance. National and
international evidence suggest that these checks are effective in identifying health needs
and providing opportunities for preventative interventions. Currently all practices in
Salford are committed to providing the checks and just over half of all adults, recognised
as having a learning disability, have received an annual health check. The information
gathered from these checks has provided an enhanced picture of local health need. The
potential for the health checks is tantalising.
However the quality of the health checks offered is unclear and the physical / mental
health outcomes achieved uncertain. More evidence is required to evaluate whether
these checks achieve improved access to mainstream healthcare services. There are
issues regarding the completeness of data; the accuracy of coding and the effectiveness
of the intervention. Quality assurance can therefore not be guaranteed. There is also
uncertainty about if and how people are referred to services if health issues are
identified. For example, evidence from the health checks suggests that levels of morbid
obesity in the local LD population is significantly higher than the non LD population
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however, this is not evident in demand for weight management services. Whilst 90% of
morbidly obese people access weight management services no obese adults with LD
access these services. Furthermore, adults with LD that use community based weight
management services have all been referred by community workers rather than via
general practice.
Primary Care Health Services
Access to primary medical care has a significant impact on how frequently and
appropriately people with LD access wider services. Difficulties accessing primary care
services can result in conditions going undiagnosed and/or untreated. The failure to
obtain timely treatment can result in more difficult to treat symptoms or hospital
admissions that could have been prevented.
Virtually all people with LD are now living in the community and depend on GPs for
primary health care needs. However, despite having more health need, people with LD
visit their GP the same as non LD patients.
Furthermore, whilst there is improved identification and recording of adults with LD in
general practice, information on the use of other community primary care services is
poor. This limits opportunities to ensure that reasonable adjustments are made that
facilitate diagnosis and treatment as well as inhibiting information to inform effective
commissioning. Crucially more effective interventions in primary care may reduce the
disproportionately high use of secondary care services by those with LD.
Secondary Care Health Services
In the UK an estimated 26% of people with LD are admitted to general hospital every
year, compared with 14% of the non LD population217.Whilst there are mechanisms in
place at SRFT to proactively identify adults with a learning disability it is not clear how
this information is used to ensure that pathways of care are reasonably adjusted to meet
the health needs of these patients. Furthermore, the appropriateness of acute
admissions (including the lengths of stay) and attendances is unclear.
At the time of this report the SRFT CQUIN data was not available. This data will enhance
the picture of health need, which will inform commissioning and has the potential to
reduce unnecessary acute admissions and to improve community primary care services.
Specialist Services
Specialist services are well regarded locally despite limited information on the impact
that specialist services have on the health outcomes for adults with learning disabilities.
However, current service provision may not be sufficient to meet the increasing number
of adults with learning disabilities in the future, particularly those with severe and
complex physical needs.
It is currently unclear if the needs of adults with learning disabilities at the end of life are
being met. The Strategic Healthcare Facilitator for LD is however working with end of
life/palliative care to improve services for adults with LD.
217
Band, R. (1998) The NHS: Health for all? People with learning disability and health care Mencap, London
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All Services
Organisations are obliged to make ‘reasonable adjustments’ to reflect the health needs
of disabled people. It is currently unknown if local clinical pathways consider the needs
of people with learning disabilities.
It is also unclear if there is equitable access to all health services for adults with learning
disabilities. Although LD is included within the Equality Impact Assessment (EIA)
Framework and Equity Audit there is limited information regarding adults with LD. This is
primarily owing to the limitations of existing service use data for adults with LD.
7. There are a number of areas where action can be enhanced locally.
7.1
Leadership and Strategy
7.1.1 Maintaining and ensuring whole system commitment to improving the health of
people with LD is a key priority. Corporate strategies and plans of the PCT
should consider and emphasise the health needs of adults with learning
disabilities; and importantly the impact that improving the health of this population
group can have in reducing the health inequality gap locally. Strategy should
incorporate targeted responses, tailored to the needs of people with LD, with
particular emphasis on the health issues that affect people with LD more than the
non LD population.
Information on the health needs of adults with learning disabilities in Salford
should be more comprehensively outlined in the Joint Strategic Needs
Assessments.
7.1.2
It is evident that people with LD experience a number of health and social
inequalities. The current political and structural landscape of the NHS is
changing, it is important therefore to ensure that the impending changes improve
the health of people with LD and do not further exacerbate health inequalities.
PCT and GP consortia should therefore recognise the elevated health needs of
people with LD and plan appropriately.
7.1.3
More work is required to increase staff awareness and understanding about the
health needs of people with LD to facilitate a cultural change in attitudes towards
people with LD.
7.2
7.2.1
Commissioning
Information on the causes of morbidity and mortality for the Salford LD population
should be analysed to determine priorities and to inform health outcome targets.
7.2.2
Joint commissioning strategies and plans should be reviewed developed and
updated to reflect the health needs for adults with learning disabilities (taking into
account national strategies and local current and projected need) and their
implementation regularly monitored and reviewed.
7.2.3
Commissioners should prepare for the demographic changes in the LD
population which will alter how and which services are used. Specifically
commissioners should ensure that plans are in place to meet the needs of:
 Increasing numbers of adults with learning disabilities.
 Increasing numbers of older adults with learning disabilities.
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Learning disabilities in Salford: A Health Need Assessment 2011
 Increasing numbers of adults coming through transition with severe and
complex physical needs.
 Increasing numbers and service demand by adults with ASD.
 People with LD from minority ethnic groups and;
 People with mild LD.
This includes workforce planning to ensure that services adequately assess and
prepare for the increasing number of people with severe and profound learning
disabilities.
Planning for older adults with learning difficulties has been ongoing for a number
of years and commissioners should work towards the recommendations included
within the Salford Project Report for Older People with LD.
The health needs of people presented within this report are largely speculative,
based on the best available data. As existing data is incomplete work is required
to improved estimates of prevalence, disease and mortality locally. Information
systems, which collect information on health status and the use of services, need
to be set up and or improved. Specifically:
 More work should be done with primary care teams to consciously case
find persons with a learning disability, particularly those with mild LD, since
the estimated prevalence for Salford by reference to QOF data appears to
underestimate prevalence from the national epidemiological literature.
 Analysis of data is also required to improve knowledge of the healthcare
needs for older people, those with profound and multiple learning
disabilities, people from ethnic minority groups and adults with mild LD.
 Primary care, secondary care and specialist services need to record
ethnicity and severity of learning disability. Improved recording of severity
of learning disability in primary care is required to further understand the
health needs of those with mild learning disabilities.
 The use of CQUINS to flag patients with LD and to monitor service use
should be extended to community primary care services, enabling the
effective implementation of reasonable adjustments.
7.2.5
Health action plans need to be promoted as the mechanism to enable all
services/providers to be aware of an individual’s health needs as part of personcentre planning. Processes should be put in place to monitor what is being
recorded in health action plans to inform both the JSNA and commissioning
strategies.
7.2.6
All service specifications should state that health services must be accessible for
adults with learning disabilities. Equality Impact Assessments should be
completed for all services and monitored regularly. Health equity audits for both
primary care and specialist services should be undertaken. All contracts with
acute trusts should include requirements for ensuring equal access for people
with LD
All new clinical pathways should have an Equality Impact Assessment (EIA)
completed to ensure that any potential adverse impact on people with learning
disabilities is considered and managed.
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Learning disabilities in Salford: A Health Need Assessment 2011
7.2.7
Patient engagement and involvement with people with learning disabilities, their
families and carers should be ongoing to shape services that are commissioned.
Responsibility for this should not be confined to the LD Partnership Board.
7.2.8
Improved communication materials are required to make finding out about, and
access to, health services easier for adults with LD. To ensure consistency in
communication across all organisations in Salford an agreed set of
symbols/system should be used for adults with LD developed with service users
acknowledging the different forms of communication used.
7.3
7.3.1
Health promotion & screening
Salford City Council should work with statutory and voluntary partners to develop
initiatives that mitigate against the social inequalities experienced by people with
LD. This includes increasing opportunities for paid and unpaid employment,
providing opportunities for friendship and relationship networks and improved
housing.
7.3.2
Commissioners and providers should ensure that all services promote the
opportunity for healthy lifestyles for adults with learning disability.
7.3.3
Ensure that all PCT commissioned lifestyle interventions (such as weight
management and exercise referral schemes) are accessible to adults with
learning disabilities and that this population group has comparable outcomes to
the non LD population.
7.3.4
The provision of healthy diet and adequate opportunity for physical activity within
day services and residential accommodation for persons with learning disability
should be appraised and the SLAs adjusted to maximise such healthy living
opportunities.
7.3.5
More work is required to understand how uptake of breast and cervical screening
attendance can be increased in the LD population. The views of people with LD,
including those who do and do not attend for screening should be sought. In
addition the findings of a recently commissioned audit, looking specifically at
breast screening for Salford women with LD, should also be used to inform local
plans to increase uptake and improve patient experience.
The higher rates of women with learning disabilities who are ceased from the
cervical screening programme should be explored further to determine whether
individuals are being ceased appropriately or not.
People with LD who attend screening programmes should be identifiable by the
system, to enable uptake and success of local measures to be monitored.
7.3.6
Adults with learning disabilities should be encouraged and supported to take part
in the bowel cancer screening programme.
7.3.7
Newly developed, and or developing, non cancer screening programmes should
incorporate the needs of people with LD into service development plans and
monitor uptake of screening in this population.
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Learning disabilities in Salford: A Health Need Assessment 2011
7.3.8
Problems that many people with LD have in terms of body weight should be
highlighted with specialist teams, primary care, residential care staff, carers and
the Health Improvement Service, to enable the delivery of appropriate advice,
opportunities for exercise and referral to the dietetics service.
7.4
7.4.1
Primary care services
Primary care should be encouraged to identify and record people with learning
disability across the whole learning disability spectrum to improve the
completeness and quality of registers. The provision of clear criteria for the
identification of people with LD in primary care would provide more complete and
validated registers, and enable more accurate estimates of need.
7.4.2
The current Health Check LES should be reviewed in order to assure the quality
of health checks; and should be regularly monitored. This includes ensuring the
completeness of data, accurate coding and analyses of use of services against
prevalent conditions in order to assure effective diagnosis and prevention and to
accurately inform commissioning priorities for people with LD.
7.4.3
A health equity audit should be conducted to identify any inequalities that there
are in the provision of primary care services for adults with learning disability.
7.5
7.5.1
Secondary Care services
Improving the recording of learning disability as a sub-diagnosis in secondary
care coding and on death certificates will improve understanding of the health
needs of adults with LD.
7.5.2
Further work should be undertaken to review, for adults with learning disabilities:
 the appropriateness of higher rates of secondary care admissions and
attendances.
 the appropriateness of longer lengths of stay.
 reasons for higher rates of nothing abnormal detected, diagnosis not
classifiable and diagnosis code left blank in Accident and Emergency
attendances.
7.5.3
SRFT should audit the LD flagging system to assess the impact of patient
identification in terms of facilitating reasonable adjustments and improving patient
experience.
7.6
7.6.1
Specialist Services
Commissioners should ensure that there are robust service specifications for all
specialist learning disability services that include agreed health outcomes
measures.
7.6.2
Specialist services should audit and assess the workforce against anticipated
changes in the LD population, in particular the increasing number of people with
severe and profound LD, and the corresponding increase in demand for services.
7.6.3
Systems need to be put in place locally to improve the identification and services
provided for those adults with learning disability in the criminal justice system to
ensure that their needs are recognised and met.
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Learning disabilities in Salford: A Health Need Assessment 2011
7.6.4
Further work is needed to quantify and define the end of life care required for
adults with learning disabilities.
8. This HNA provides evidence of the current and future significance of health
need amongst people with LD; necessitating continued partnership action and
investment.
The evidence presented throughout this needs assessment illustrates the need to renew
commitment to systemic improvement across the health system for people with LD.
Existing and predicted demographic changes represent considerable current and future
health impact resulting in significant economic costs to the NHS and Local Authority as
well as increasing poor health and widening health inequalities.
All organisations are therefore required to consider the findings from this HNA and how
they can be implemented.
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Learning disabilities in Salford: A Health Need Assessment 2011
7.
MAINTAINING MOMENTUM: RECOMMENDATIONS
MAIN MESSAGES
 This HNA has led to the following overarching recommendations:
1. There needs to be stronger recognition of the health needs of people with LD in
local strategy and commissioning.
2. The LD Partnership Board, with support from the Public Health Department,
should influence PCT and SRFT corporate policy and practice to raise the
profile of the health needs of adults with LD.
3. Information systems should be developed or improved to enhance information
about, and to monitor outcomes for, people with LD.
4. The role of adults with LD and their carers in health service planning should be
increased. This should include support for patient and carers to better navigate
health services.
5. A detailed action plan should be developed to provide a framework through
which to implement the recommendations outlined in this needs assessment to
ensure continuing improvement in health services for adults with learning
disabilities.
 There are also a number of service specific recommendations for health promotion
and screening, primary and secondary care and specialist services.
The following recommendations have been developed in response to need, the evidence
and policy base, gaps in existing policy and or services. In addition, a number of relevant
partnership boards and groups have been consulted to contribute to the
recommendations included.
The recommendations have been divided into two parts; there are 5 overarching
recommendations for all partners and separate, specific recommendations for health
promotion and screening; primary and secondary care and specialist services.
7.1
OVERARCHING RECOMMENDATIONS
Recommendation 1: There needs to be stronger recognition of the health needs
of people with LD in local strategy and commissioning.
Specifically:
 The JSNA should be updated to include the health needs of adults with LD as
identified in this HNA.
 Local strategies should also be updated to target the health needs of adults with
LD; in particular the following strategies, were there are specific needs amongst
the LD population:
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Learning disabilities in Salford: A Health Need Assessment 2011
-
Cancer
CVD
Overweight & Obesity
Specific cancer and non cancer screening programmes action
plans
End of Life
 Salford City Council should work with NHS Salford to ensure that local strategy
(relating to education, employment and housing) includes actions to address the
social inequalities experienced by people with LD.
 Commissioners should use the information included within this HNA to inform
future service specifications taking into account the changing demographics of the
LD population and the specific needs of older people with LD, those with severe
and complex health needs, people from ethnic minority groups and people with
mild LD.
 The quality of the Health Check LES, in terms of recording and outcomes, should
be assessed (see primary care recommendations).
 Health Impact Assessment and Equity Audits should also be used to monitor
access issues, uptake and outcomes amongst the LD population. The requirement
for this should be explicitly described in service specifications.
 The use of Health Action Plans for adults with LD should be promoted in service
specifications for all relevant services.
 CQUINS, based on those in secondary care, should be established for primary and
community services.
Recommendation 2: The LD Partnership Board, with support from the Public
Health Department, should influence GP commissioning, the PCT and SRFT
corporate policy and practice to raise the profile of the health needs of adults
with LD.
This should include:
 Training for frontline staff, implemented across the health economy, to increase
knowledge and understanding of the health and access issues experienced by
adults with LD. It should emphasis professional responsibility and make clear the
law with regards to consent and capacity and duty of care.
Recommendation 3: Information systems should be developed or improved to
enhance information about, and to monitor outcomes for, people with LD.
 A system for the collection of local morbidity and mortality data should be
established. Data should be analysed annually to inform service planning.
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Learning disabilities in Salford: A Health Need Assessment 2011
 LD case finding in primary care should be enhanced to include people with mild
LD.
 The ethnicity of the person and severity of the LD should be routinely recorded.
 Systems should be put in place to monitor the number of adults who have a health
action plan.
Recommendation 4: The role of adults with LD and their carers in health service
planning should be increased. This should include support for patient and
carers to better navigate health services.
 Patient engagement and involvement should be ongoing but not reliant on the LD
Partnership Board.
 Health services, alongside Salford City Council, should work with adults with LD to
identify appropriate, standardised communication materials to facilitate better
health literacy, access and awareness.
 Training for support workers and carers should be commissioned to provide basic
awareness of health needs, signs and symptoms of prevalent conditions and
information about navigating health services, e.g. consent and capacity, screening
and vaccinations, advocacy and assertiveness.
Recommendation 5: A detailed action plan should be developed to provide a
framework through which to implement the recommendations outlined in this
needs assessment to ensure continuing improvement in health services for
adults with learning disabilities.
7.2
SERVICE SPECIFIC RECOMMENDATIONS
7.2.1
Health Promotion & Screening
1. The PCT and Health Improvement Team should ensure that lifestyle
interventions/services are accessible for adults with LD and that outcomes
are comparable with the non LD population.
2. There should be opportunities for physical activity, and access to healthy
food, at residential accommodation and day services. Availability should be
audited and SLA’s adjusted as required.
3. Research with providers and service users should be undertaken to identify
how uptake of breast and cervical screening can be increased.
4. New and developing cancer (bowel) and non cancer screening programmes
should develop tailored plans which target adults with LD and monitor uptake
in this group.
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Learning disabilities in Salford: A Health Need Assessment 2011
5. Seasonal vaccination programmes should target adults with LD and monitor
both the offer and uptake in this group.
7.2.2
Primary Care
1. All primary care and community services should identify and record people
with LD across the whole LD spectrum, using a standardised and agreed
method of identification.
2. The Health Check LES should be reviewed to assure quality; including a
regular review of performance, completeness of data, accuracy of coding and
analysis of referral to, and the use of, services for prevalent conditions.
7.2.3
Secondary Care
1. Secondary care services should improve recording of LD as a sub diagnosis
in coding and on death certificates.
2. SRFT and the PCT should analyse the appropriateness of attendances and
admissions, lengths of stay and incomplete recording for patients with LD to
assess LD patient outcomes compared with the non LD patient population.
3. SRFT should work with primary care, support workers and carers to develop
protocols for routes in and out of hospital for LD patients. For example,
notification of incoming patients with LD to enable reasonable adjustments
e.g. extended time, equipment or private bay and on discharge effective and
appropriate discharge and discharge planning.
4. SRFT should audit the LD flagging system to assess the impact of recording
on patient outcomes, e.g. reasonable adjustments and improved patient
experience.
7.2.4
Specialist Services
1. Health outcome measures should be defined in all specialist LD service
specifications, providers should work with commissioners to identify
appropriate measures.
2. Specialist services should audit and assess the workforce against anticipated
population change, health need and projected increases in demand for
services.
3. Specialist services should work with HMP Forest Bank and the Police to
improve identification of, and services for, adults with LD in the criminal
justice system.
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Learning disabilities in Salford: A Health Need Assessment 2011
APPENDIX 1
EVIDENCE OF EFFECTIVENESS
Epilepsy
Reference
The aim was to establish pragmatic evidence-based guidance for key issues in
the management of epilepsy in people with intellectual disabilities. The authors
pointed out that whilst the quality of the available evidence was often very
limited; this process achieved a good deal of consensus in key areas.
Key points:

Differential diagnosis of epilepsy in people with intellectual disability for example the group recommends prevention of inappropriate or misdiagnosis
by following appropriate diagnostic pathway;

Treatment - refractory epilepsy - e.g. when three or more anti-epileptic
drugs (AEDs) have failed - drugs for individuals with refractory epilepsy should
be chosen on basis of the patients’ seizure type, seizure syndrome, aetiology
and awareness of side effect profile;

Drug side effects – the confounding impact cognitive disability and
difficulties in recognising the impact of drugs in people with intellectual disability
means that evidence of side effects from studies in the general population
cannot simply be extrapolated;

Drug interactions – this is complicated by difficulties in patients
communicating their symptoms, so should be re-evaluated whenever changes
in non-AED medication are made;

Behaviour – the group recommends an initial clear description of any
behavioural presentation;

Impact of co morbidity, e.g. psychiatric co morbidity, depression,
anxiety, behaviour problems, autism and attention deficit and hyperactivity
disorder should be identified for impact on treatment decision-making and
treatment outcome assessment;

Referral procedures for epilepsy surgery – presence of intellectual
disability is not a contraindication to neurosurgery for epilepsy, individual
assessments should form the basis of referral decisions, with an MRI scan
essential;

In relation to epilepsy in those with autism, the group recommend
extreme diagnostic caution when assessing behaviour disturbance or repeated
stereotypes which might be due to epilepsy.
This was a review of published reports between 1963-2006 to compare the
prevalence of epilepsy among autistic patients with intellectual disabilities
versus autistic patients without intellectual disabilities and among male versus
female autistic patients.
Consensus Statement
Kerr M et al. Consensus
guidelines into the
management of epilepsy in
adults with an intellectual
disability. Journal of
Intellectual Disability
Research. 2009. 53, 8, 687694.
A strong discrepancy in relative risk (RR) according to IQ was found, more
autistic patients with intellectual disabilities having epilepsy (RR = .555; 95%
confidence interval [CI]: .42-.73; p < .001);

Pooled prevalence of epilepsy was 21.5% in autistic subjects with
intellectual disabilities versus 8% in autistic subjects without ID;

A strong discrepancy in RR according to sex was found, favouring co
morbidity of epilepsy in autistic girls (RR = .549; 95% CI: .45-.66; p < .001).
Systematic Review
Amiet C, Gourfinkel-An I,
Bouzamondo A, Tordjman S,
Baulac M, Lechat P, Mottron
L, Cohen D. Epilepsy in autism
is associated with intellectual
disability and gender:
evidence from a metaanalysis. Biological Psychiatry
2008; 64(7):577-82.
The authors concluded that risk for epilepsy in autism is a function of
intellectual disability severity and distinguishes autism associated with epilepsy
as a subgroup of autism by its male-female ratio.
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Learning disabilities in Salford: A Health Need Assessment 2011
Effectiveness of newer AEDs
(references of individual studies below in italics)
The NICE guidelines (2004) on newer drugs for epilepsy in adults:
Seven drugs have been defined as ‘newer’ anti-epileptics for the purposes of
this appraisal. However, some of them have been on the market for several
years and are already in widespread use. Vigabatrin was first marketed in the
UK in 1989, lamotrigine in 1991, gabapentin in 1993, topiramate in 1995 and
tiagabine in 1998. The newest – levetiracetam and oxcarbazepine – were
launched in 2000. Three of the newer drugs are licensed for use as
monotherapy: lamotrigine, oxcarbazepine and topiramate. All seven drugs are
licensed for use in combination therapy. Epilepsy (adults) – newer drugs: NICE
Guidance (March 2004) http://www.nice.org.uk/page.aspx?o=ta076guidance
Evidence review
National Library for Health,
Learning Disabilities Specialist
Library. What is the current
evidence in relation to the
effectiveness of newer antiepilepsy medications and
people with learning
difficulties? Feb 2007.
A randomized, double-blind, placebo-controlled trial (2005) looked at the effect
of topiramate as add-on therapy on seizure frequency, seizure severity, and
quality of life in patients with epilepsy and intellectual disability. The study
suggested that topiramate reduces seizure frequency in patients with epilepsy
and intellectual disability without the added burden of behaviour effects, and
was potentially advantageous to physical wellbeing. Kerr, MP et al. A
randomized, double-blind, placebo-controlled trial of topiramate in adults with
epilepsy and intellectual disability: impact on seizures, severity, and quality of
life. Epilepsy Behaviour, 2005 Nov;7(3):472-80.
A randomised open label study (2001) compared gapapentin with lamotrigine
looking at efficacy and safety in patients with learning disabilities and resistant
epilepsy. The study found no statistically significant treatment differences and
the safety profile of both drugs was consistent with that seen in previous clinical
trials. Carer-rated visual analogue scales showed improvements for the
gabapentin-treated patients in seizure severity, attention, general health and
sleeping pattern, while for lamotrigine seizure severity improved significantly.
The study concludes that gabapentin and lamotrigine provide safe and effective
treatment, with positive benefits on behaviour for learning disabled patients with
resistant epilepsy. Crawford P et al. A randomized open-label study of
gabapentin and lamotrigine in adults with learning disability and resistant
epilepsy. Seizure, 2001, 10 (2) 107-15.
This review confirms that in the majority of cases where intellectually disabled
populations participated in trials of anti-epileptic drugs, moderate reductions in
seizure frequency and occasional seizure freedom were obtained. Concern
about side effects is likely to influence clinical decision making. Where side
effects are experienced they appear similar to those seen in people without
intellectual disabilities. An area of key concern is the possibility of behaviour
disorders induced by anti-epileptic drugs. The majority of studies identified in
this review lack or do not use reliable measures for behaviour. However the
studies that do measure behaviour show little obvious impact. In summary, this
review broadly supports the use of anti-epileptic drugs to reduce seizure
frequency with refractory epilepsy and intellectual disability. Side effects seem
to be the same as in the general population. Behaviourial side effects leading to
discontinuation of the treatment are rare.
Cancer
The guidance recommends good practice to ensure that, wherever possible,
women with a disability:

have access to information to enable them to make their own
decisions;
Systematic Review
Beavis J, Kerr M, Marson AG.
Pharmacological interventions
for epilepsy in people with
intellectual disabilities.
Cochrane Database of
Systematic Reviews 2007,
Issue 3. Art. No.: CD005399.
DOI:
10.1002/14651858.CD005399
.pub2.
Reference
Guidance
NHS Cancer Screening
Programmes. Equal Access to
Breast and Cervical Screening
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Learning disabilities in Salford: A Health Need Assessment 2011

know what to expect when they attend for screening;

understand the possible consequences of screening and of not having
screening, and the need to be aware of changes in their own bodies.
The uptake of cancer screening services has been found to be lower in people
with learning disabilities than in the general population, with 23% of women in
one study reported as being given no explanation about the procedure and
another reporting women with learning disabilities being arbitrarily removed
from screening lists by their doctor. This review suggests that whilst the current
evidence base suggests a low incidence of breast cancer and low uptake of
breast screening, it should not be interpreted as support to discourage women
with learning disabilities from attending breast screening. As people with
learning disabilities now live longer, they will experience the same age-related
illnesses as the general population and cancer is a prime example of this.
for Disabled Women. Cancer
Screening Series No 2
March 2006.
Systematic Review
Willis DS, Kennedy CM,
Kilbride L. Breast cancer
screening in women with
learning disabilities: current
knowledge and
considerations. British Journal
of Learning Disabilities, 36(3),
September 2008, pp.171-184.
This review highlighted the high prevalence of H. pylori, a class 1 carcinogen
linked to stomach cancer, gastric ulcer and lymphoma in people with learning
disabilities suggesting the need to minimize transmission with respect to the
infection itself, and its development into gastro-intestinal cancer.
Review
Hogg J, Tuffrey-Wijne I.
Cancer and intellectual
disability: A review of some
key contextual Issues. Journal
of Applied Research in
Intellectual Disabilities 2009;
21:509-518.
Review
Sasco, A, et al. Testicular
cancer and intellectual
disability. International Journal
on Disability and Human
Development 2008; 7(4):397403.
Review
Tuffrey-Wijne et al. End-of-life
and
Palliative Care for People with
Intellectual Disabilities Who
have Cancer or Other LifeLimiting Illness: A Review of
the Literature and Available
Resources, Journal of Applied
Research in Intellectual
Disabilities. 2007;20(4):331344.
Reference
The authors found that testicular cancer was more frequent in subjects with
intellectual disability than in the general population, but the occurrence
depended on the specific genetic condition.
This study highlighted indications in the literature that healthcare staff (including
palliative care staff) lack exposure to people with learning disabilities, and this
suggests a lack of access to mainstream health services. Information available
in the learning disability literature may not always easily accessible to palliative
care staff.
It also highlighted a significant lack of insight into the needs and experiences of
terminal illness from the perspective of people with learning disabilities
themselves.
Coronary heart disease
Apart from lack of exercise (which was much more prevalent than for the
general population) and overweight or obesity, the overall CVD risk factor
profile of supported older adults with ID appears generally more favourable
compared to the age-matched general population, although the occurrence of
all risk factors is still common. Healthy lifestyle programs for this population
should focus on implementation of exercise and nutrition strategies.
Audit
Wallace RA, Schluter P. Audit
of cardiovascular disease risk
factors among supported
adults with intellectual
disability attending an ageing
clinic. J Intellect Dev Disabil.
2008 Mar;33(1):48-58.
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Learning disabilities in Salford: A Health Need Assessment 2011
The authors concluded that whilst the review supported the use of
cardiovascular exercise programmes for people with Down’s syndrome, the
evidence was limited and further research is required to confirm the review
findings. Overall, this was a well-conducted and reported review and the
authors' cautious conclusions are likely to be reliable.
Sensory impairment
Systematic Review
Dodd K, Shields N. A
systematic review of the
outcomes of cardiovascular
exercise programs for people
with Down syndrome. Archives
of Physical Medicine and
Rehabilitation, 2005; 86(10):
2051-2058.
Reference
For adults with an intellectual disability, routine screening for age-related visual
loss at 45 years and every five years thereafter has been recommended. If
possible this should be done by an ophthalmologist. An extra vision check at
age 30 years has been recommended for adults with Down’s syndrome. These
were the visual problems highlighted by the Down’s Syndrome Medical Interest
Group:

Refractive errors and/or squint often present from an early age;

Cataract and/or glaucoma occurring in infancy;

Nystagmus present in at least 10% of the DS population;

Keratoconus more common in adolescents and young adults.
Endocrine
Guidance
International Association for
the Scientific Study of
Intellectual Disability. Down's
Syndrome Medical Interest
Group. Basic medical
surveillance for people with
Down's Syndrome.
Ophthalmic problems. 2006.
The aim of the review was to assess the clinical effectiveness and costeffectiveness of growth hormone (GH) in children with one of five conditions:
growth hormone deficiency (GHD), Turner syndrome (TS), chronic renal failure
(CRF), Prader-Willi syndrome (PWS) or idiopathic short stature (ISS).
Systematic review
Bryant J, Cave C, Mihaylova
B, Chase D, McIntyre L,
Gerard K, Milne R. Clinical
effectiveness and costeffectiveness of growth
hormone in children: a
systematic review and
economic evaluation. Health
Technology
Assessment.2002;6(18):1-168.
Summarising the benefits of treatment, the authors concluded that although the
quality of the evidence was variable, GH treatment can increase short-term
growth and improve final height. However, the effects of GH on final height
should be treated with caution due to the poorer quality of the included studies
reporting this outcome. The authors stated that a full course of GH treatment is
expensive and that the budgetary impact of large increases in prescribing in the
UK would be substantial.
Women’s health
The author identifies a number of key issues that emerge from this study:

Use of specialist family planning services (FPS) - A small proportion of
the women in the study used family planning services. They suggest that FPS
staff are specialists and may have more time for consultations than GPs. They
suggest that partnership working with intellectual disability nurses could help
develop accessible, high-quality family planning services for this group of
women;

Use of Depo-Provera - the author suggests the findings of the study
confirm the disproportionate use of Depo-Provera with women with intellectual
disabilities (against 4% of women in the general population). There are
concerns about both short term and long term side effects and cannot be
reversed during the treatment cycle. The authors also point out that DepoProvera is a method of contraception ‘controlled by the medical profession’, as
once injected there is nothing more the user can do. The authors point out the
danger that such methods have potential to increase providers' control over
clients' choice;

The 'just in case' approach - the author suggests that the study findings
confirm that contraception is given to women who are not sexually active,
Reference
Reference
McCarthy M. Contraception
and Women with Intellectual
Disabilities.Journal of Applied
Research in Intellectual
Disabilities. 2009; 22, 4, 363369.
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Learning disabilities in Salford: A Health Need Assessment 2011
suggesting that there may not be a link in the minds of the women or their
carers and doctors between actual sexual activity and the need for
contraception, suggesting a 'just in case' approach which is not an acceptable
long-term strategy for most women. She also points out that attention was not
paid to the decline in fertility by age, with five women between the age of 37
and 47 on Depo-Provera injections.

Exercising choice and control - despite the small study size the findings
seem to suggest most of the women in the sample did not feel they made their
own decisions about contraception. The author points out that there needs to
be a balance between protection and empowerment but in this sample,
methods of contraception appeared to be used because they required little or
no active participation by the women themselves. She suggests that such
‘protective practices’ need to be challenged on a collective level in order to
emphasize the need for women with intellectual disabilities to exercise as much
choice and control as they possibly can.
Obesity
Obesity is more prevalent in adults with intellectual disabilities than in general
population. There are few studies examining effectiveness of weight loss
interventions for adults with intellectual disabilities. This review provided some
evidence to support interventions taking into account context of lives of adults
with intellectual disabilities, including carer involvement in interventions.
This was a report of prevalence of risk factors for 500 people with intellectual
disabilities (mean age 44.37 yrs) living in different forms of residential provision
in the UK:

Levels of smoking and alcohol abuse were low;

Prevalence of poor diet, obesity in women and physical inactivity was
high;

Greater ability and less restrictive residential settings associated with
poor diet, smoking and obesity;

Physical inactivity associated with lower ability and more restrictive
settings;

Authors argue that increasing levels of moderate or vigorous physical
activity among people with intellectual disabilities would be single most effective
way of improving their health.
Reference
Review
Hamilton S et al. A review of
weight loss interventions for
adults with intellectual
disabilities. Obesity Reviews.
2007; 8, 339-45.
Single study
Robertson J, Emerson E et al.
Lifestyle related risk factors for
poor health in residential
settings for people with
intellectual disabilities.
Research in Developmental
Disabilities. 2000; 21(6): 469486.
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Learning disabilities in Salford: A Health Need Assessment 2011
APPENDIX 2
ICD10 Code Definitions
CODE
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
R
S
T
V
W
X
Y
Z
DEFINITION
Certain infectious and parasitic diseases
Certain infectious and parasitic diseases
Malignant Neoplasms
Neoplasms
Endocrine, nutritional and metabolic diseases
Mental and behavioural disorders
Diseases of the nervous system
Diseases of the eye and adnexa
Disesases of the circulatory system
Disesases of the respiratory system
Diseases of the digestive system
Diseases of the skin and subcutaneous tissue
Diseases of the musculoskeletal system and connective tissue
Diseases of the genitourinary system
Pregnancy, childbirth and the puerperium
Certain conditions originating in the perinatal period
Congenital malformations, deformations and chromosomal
abnormalities
Symptoms, signs and abnormal clinical and laboratory findings, not
elsewhere classified
Injury, poisoning and certain other consequences of external causes
Injury, poisoning and certain other consequences of external causes
External cause of morbidity and mortality
External cause of morbidity and mortality
External cause of morbidity and mortality
External cause of morbidity and mortality
Factors influencing health status and contact with health services
97