THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST
Board Paper - Cover Sheet
Date
03.12.2015
Lead Director
Report Title
Learning Disability Update
Nursing and Patient Services Director
Report
Author
Mrs Helen Lamont, Nursing and Patient Services Director
Ms Frances Blackburn, Deputy Director of Nursing and Patient
Services (Freeman)
Mrs Alison Forsyth Learning Disability Liaison Nurse
NHS Unclassified
Classification
Discussion
Agenda Item A5(v)
Purpose (Tick
one only)
Approval
For Information
Links to
Strategic
Objectives
Links to CQC
Domains/
Fundamental
Standard(s)
To put patients and carers at the centre of all we do and to
provide care of the highest standard in terms of both safety and
quality.
Regulation 13:
Identified
Risk? (If yes,
risk
reference)
Resource
Implications
Legal
implications
and equality
and diversity
assessment
Benefit to
patients and
the public
No.
Report
History
Previous report May 2015
Next steps
Trust Board to receive the briefing and note progress and
endorse future developments

Are they safe?
Are they effective?
Are they responsive?
Are they well led?
No resource implications.
This paper demonstrates the Trust takes seriously its legal duties
in relation to individuals with a Learning Disability and provides
assurance that the Trust is compliant with related Monitor and
CQC requirements, and is continuing to progress this agenda.
It also demonstrates commitment to the Equality Act 2010.
Provide assurance that robust mechanisms are in place to
identify and support individuals with a Learning Disability
Agenda item A5(v)
THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST
LEARNING DISABILITY UPDATE
EXECUTIVE SUMMARY
In May 2015, the Board was updated regarding the Trust’s response to a range of
national recommendations about caring for people with a learning disability, and also
in relation to the on-going work of the Trust’s Learning Disability Liaison Team.
This paper provides a summary of recent developments and provides assurance that
the Trust is compliant with related Monitor and CQC requirements, and is continuing
to progress this agenda.
The Trust continues to work in partnership with the North East and Cumbria Learning
Disability Network and recently hosted a visit to the Trust by the NHS England lead
on Access to Healthcare for people with learning disabilities.
The Trust continues to undertake formal e-Learning Disability Mortality Reviews and
has developed an identified process and panel to review local cases, and identify
how premature mortality for this group of patients can be reduced. Work is ongoing
nationally to develop a national process to commence in 2016/17 and the Trust is
assisting with this work.
Audit work is ongoing to improve practice regarding clinical staffs’ documentation of
good practice and reasonable adjustments, as initial results do not demonstrate
consistent documentation.
This paper also identifies potential risks, the key ones being that the Trust fails to
meet the needs of patients, or to provide appropriate reasonable adjustments.
RECOMMENDATION
To i) receive the briefing and note progress and ii) endorse future developments.
Helen Lamont
Nursing & Patient Services Director
Frances Blackburn
Deputy Director of Nursing and Patient Services (Freeman)
Alison Forsyth
Learning Disability Liaison Nurse
3rd December 2015
THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST
LEARNING DISABILITY PROGRESS REPORT
1.
INTRODUCTION
The Trust continues to develop its infrastructure and working practice to improve
care for people with learning disabilities. This has been led by the Chief Executive,
and Nursing and Patient Services Director, supported by the Learning Disability
Steering Group and the Learning Disability Liaison Team, with operational
leadership being effectively provided by the Deputy Director of Nursing and Patient
Services (Freeman). On-going progress is evident and reported in this paper.
In response to the report published by Sir Jonathan Michael, Healthcare for All
(2008), the Care Quality Commission (CQC) requires Trusts to self-assess against
six questions related to access to healthcare for people with a learning disability.
The Trust continues to declare compliance with these standards via Monitor and to
further enhance provision; the current position is detailed in Appendix One.
The Trust continues to actively contribute to Regional work, including the North
East and Cumbria Learning Disability Network of which Sir Leonard is the Chief
Executive sponsor.
This paper provides the Board with an update on progress made within the last six
months and a summary of further commitments proposed for 2015/16.
2.
CQC REQUIREMENTS AND ‘SIX LIVES’ PROGRESS
In relation to the CQC requirements, work has been on-going within the Trust, with
corporate leadership from Patient Services and progress can be demonstrated
against each requirement, with the Trust being able to demonstrate achievement
against all six recommendations (Appendix One).
3.
IDENTIFICATION OF PATIENTS WITH A LEARNING DISABILITY
At present the Trust places a flag on a patient’s electronic record when a clear
diagnosis of learning disability is established. Currently 1,567 patient records are
“flagged”.
The flagging system enables the Trust to identify the number and location of
contacts with patients with a Learning Disability, which ensures better monitoring,
planning and co-ordination of care.
The table overleaf shows the number of type of contacts.
1
Spells of Care
In Patient
Outpatient Attendances
Emergency Department
1st April 2015 to 30th
September 2015
537
1832
365
Number of patient
attending ED more than
three times in the period
Total episodes of care
1st April 2014 to 30th
September 2014
314
1632
384
18
15
2734
2294
The Trust has facilitated an additional 440 documented episodes of care in the
time period 1st April to 30th September 2015 in comparison to equivalent period
last year, a 16% increase from a similar period the previous year. This, in part,
could be due to the additional identification and flagging of 169 people with a clear
diagnosis of a learning disability i.e. we may simply be more aware of the needs of
these patients than was previously the case.
The flagging system also enables the Learning Disability Liaison nurses to identify
forthcoming appointments and to have a “virtual ward” which enables them to see
at a glance where patients with a learning disability are at any one time
4.
LEARNING DISABILITY LIAISON NURSE UPDATE
The Learning Disability Team continues to make a significant contribution to
improving individual patients’ and families’ experience, the development of Trust
infrastructure to support those with a learning disability, and to the provision of
advice and expertise within the Trust.
Within 2015 the role has continued to focus on the integration and promotion of
the needs of patients with learning disability and supporting clinicians to recognise
where reasonable adjustments are required, and to ensure these are met. The
workload has continued to increase with the service receiving 311 formal referrals
during the period of 1st April 2015 and 30th September 2015 (254 in same period
in 2014) representing an 18.3% increase from similar period the previous year.
The Nurses are contributing to the co-ordination and planning of the care for some
patients with very complex needs, particularly in relation to the avoidance or
management of challenging behaviours.
5.
PATIENT AND CARER FEEDBACK
The Trust continues to elicit patient feedback, from the patient, their carer or
healthcare professional via Easy Read questionnaires, or direct contact, following
attendances within the Trust. These cover admissions to all sites and for various
interventions and attendances.
2
Overall feedback is positive:
i)
This feedback is from carers, after a patient who had a moderate learning
disability, was admitted to the Freeman Hospital for an angiogram and then
surgery the following day. Carers were allowed to support the patient in the
catheter laboratory for the procedure to ensure reassurance and support
could be given during the procedure. This had a significant impact on how
well the patient tolerated the intervention, and overall health outcome.
Staff were very accommodating and supportive of the patient needs,
thank you!
ii)
This feedback is from a learning disability professional who supported a
person with a learning disability to the diabetic centre.
Just a quick note to thank you for your assistance with regard to the
Diabetes appointment. The software was in place for the patient’s
monitor and the consultant was able to show, as well as explain, how
the levels changed and how often they were high/low, the patient
engaged well with this and agreed to manually record readings in the
diabetes diary provided and to take to next appointment. Again thank
you for your support with this.
The individual issues and feedback raised are shared with relevant staff and
findings are reported via the Learning Disability Steering Group and Patient Carer
and Public Involvement Group.
These surveys will continue to ensure effective patient and carer feedback is
elicited and shared internally and externally so that maximum learning can be
achieved.
6.
LEARNING DISABILITY MORTALITY REVIEW
As previously noted the Trust has continued the Learning Disability mortality
review process.
The Trust has developed a pathway requiring the deaths of all people with a
learning disability to follow the standard Trust mortality level 2 review processes.
This requires that the patient is discussed at a Directorate Mortality and Morbidity
meeting or, if timing falls out with a 3 week period, an MDT to be specifically
arranged.
The meeting considers:




If the patient’s death was unexpected or premature?
Did the patient’s healthcare fall below an acceptable standard and lead to
harm? (NCEPOD scale)
Was the patient’s death avoidable if the problems in healthcare had not
occurred? (Hogan Scale)
Did the patient’s learning disability impact on their death or the outcome?
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All patients are then discussed at a newly formed Trust Learning Disability
Mortality Review Panel led by the Deputy Nursing and Patient Services Director
(Freeman), Director of Quality and Risk, and Clinical Director for Quality and
Safety, where further actions and the key learning points will be captured for
sharing.
In relation to Quarter 2, it was identified that within the Trust seven people with
learning disabilities died between 1st July and 30th Sept 2015. Two of the patients
were female and five male. The age range was between 19-73yrs. The mean age
was 52.5 years and a median age 58 years. Two of the seven people identified
had heart disease recorded as the disease or condition which directly led to their
death, two people had cancer as the condition. Three of the patients’ initial
contact with the Trust was through the Emergency Department; three patients
were directly admitted to a ward.
All of the people discussed in this review had a number of co-morbidities and this
poses the question regarding whether there is a need to identify an overarching
medical lead for this group of patients with complex needs, and who may have
multiple Consultants involved in their care?
The review recommended that consideration should also be given to the
facilitation of appropriate patient transfer especially if this transfer is out of hours,
ensuring that referring hospitals have involved the Trust’s Critical Care Outreach
Service to assess appropriateness of transfer if the patient is critically ill, and
ensuring that senior decision makers are informed of condition on arrival and
involved in treatment planning, this is relevant to both internal and external
transfers. One of the cases will be presented at a forthcoming Patient Safety
Briefing to raise awareness of the need to discuss patients, post transfer, with a
senior clinician.
There was evidence of appropriate completion of DNA CPRs and good
discussions with families at all stages of patients’ care. Good examples of
reasonable adjustments were recorded within patient notes in aiding patient and
clinician communication. Additional consideration must be made for the completion
of application for Deprivation of Liberty safeguards.
This work is being undertaken in advance of next year’s implementation of a
National Learning Disability Mortality Review process which is to be piloted in the
North East.
A first meeting of stakeholders has taken place to establish the operational
delivery of local reviews; this has identified a number of required actions including:



Establishment of a regional Steering Group to include key partners i.e. the
Coroner, representatives from Safeguarding and Child Death Review
Panels, the Local Authority, Care Quality Commission Service, Providers,
Commissioners, the Local Area Team, and a family representative.
Local reviewers from different agencies are to be identified to undergo
training.
Discussion regarding under whose governance the process is to be
convened, which may be Safeguarding Adult boards, is planned.
4

A process of local reviews for those aged 4-75yr to be agreed, in first year
the priority will be for themed multiagency reviews for deaths of young
people (18-24years) and for those from black and minority ethnic
communities.
An additional project is to run alongside this to map provision of reasonable
adjustments, improving death certificates, and to develop the repository for
anonymised reports and data.
The Trust has been asked to pilot the national data collection system and the
Development Team from Bristol is visiting the Trust on the 9th December to input
anonymous data into the web browser, from one of the Trust’s detailed reviews.
7.
LEARNING DISABILITY AUDIT (Appendix Two)
The aim of the audit is to assess if, when patients with learning disability become
inpatients within the Trust, there is:

Documentary evidence that their pathways of care were reasonably adjusted
to meet their individual needs.

Hospital passports were being utilised appropriately.

Written evidence of capacity assessment is present in records.
The audit also identifies awareness of Trust learning disability flagging processes
and Learning Disability Liaison Service.
The key findings highlighted that inpatient areas were aware, through the patient’s
e-records alert system that the patient had a clear diagnosis of the presence of a
learning disability.
Staff were also aware that if needed they could elicit further advice and support
from the Learning Disability Liaison Team. It also demonstrates that the email that
is sent to the clinical team (Consultant and Ward Sister) responsible for the
patient, by the Learning Disability Liaison Service who are notified of admission by
an automated alert from e-Record (RAPPA alert), has prompted increased usage
of appropriate Care Plans.
The Audit recommendations include the need for continued awareness raising of
the Acute Needs Assessment (a tool to identify additional risk that the patient with
a learning disability may be exposed to), the recording of reasonable adjustments
if needed, and the completion of the ‘DisDat’ (a recognised tool that helps to
measure distress in patients who have no verbal communication) if the patient has
limited communication. The audit also identified documented evidence of
adherence to the Mental Capacity Act 2005 was not always clear, identifying the
need to ensure the formal recording of the assessment of capacity within the
patient notes or on MCA1/2 forms. The audit also identified some occasions when
application for Deprivation of Liberty had not been considered and should have
been.
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8.
PROJECT CHOICE
The Trust continues to be highly committed not only to the care of its patients with
a learning disability but also to playing a key role in delivering a health service
where equality, diversity and human rights are embraced and communicated in the
everyday work of staff.
Project Choice supports this aim by providing opportunities that not only support
those with learning difficulties, disabilities or autism to become positive role
models, but allow them to actively gain work experience and employment and to
contribute to them feeling valued for what they achieve. The Project equips
students with work-based transferable skills enabling them to be work-ready after
completion of an academic year. The Trust recognises that positive action can
help to remove barriers to employment and proactively addresses the underrepresentation of disabled staff in employment.
Now in its fourth year, the Trust has provided 33 internships and the project has
had fantastic results with 76% of all applicants having transitioned into
employment, (this is exceptional when compared to a national average of 7% of
people with a learning disability being in employment). 68% of those who have
gained employment have secured employment within the Trust.
The Project scooped a recent Health Service Journal award, and the judges were
unanimous that this is an ‘exceptional project that should be delivered
nationally’ and described the scheme as’ therapeutic and efficient’, enhancing the
work life of co-workers.
9.
VISIT BY NHS ENGLAND LEAD
The Trust hosted a visit from Crispin Hebron the NHS England lead on Access to
Healthcare for people with a learning disability on 3rd November 2015 so that he
could see, in practice, the work that has been completed to support the needs of
patients with a Learning Disability in the Trust. During his visit Mr Hebron met the
Trust’s Learning Disability Liaison Nurses, who demonstrated the Trust’s flagging
system for patients with a known Learning Disability.
Mr Hebron also saw examples of the Trust’s Learning Disability Care Pathways
which have been in place for nearly three years and met with the Deputy Director
of Nursing and Patient Services (Freeman) and Trust Consultant in Intensive
Therapy and Respiratory Medicine, both of whom are members of the Learning
Disability Mortality Review panel. Discussions were held regarding the
development of Trust processes, lessons learned, good practice and how this was
disseminated through the Trust.
Mr Hebron stated he was ‘very impressed by the systemic approach to addressing
the needs of patients with learning disabilities’, and that the Trust’s commitment
and determination to make a difference were commendable’.
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10. TRANSITION FROM CHILD TO ADULT SERVICES
The Learning Disability Liaison Team is beginning to work in partnership with the
Children’s Directorate to help identify children who are “transitioning” between
paediatric and adult Trust services. The team liaises between specialities to gain
an understanding of department transition process within Trust policy. The young
person and carer’s pathways are followed and reasonable adjustments offered to
promote a smooth journey. A number of the young people have numerous comorbidities and again this highlights the potential need for an overarching adult
medical clinician for this complex group of young patients who may have multiple
clinicians involved in their care.
11. RISKS AND RISK MITIGATION
The key risks are that the Trust fails to:




Meet its duty of care to effectively support patients with learning disabilities
or to provide reasonable adjustments.
Provide the necessary reassurance to the CQC.
Continue the momentum to identify patients with learning disabilities and,
ensure that they follow pathways of care which are reasonably adjusted to
meet their individual.
Recognise the needs to reiterate key messages and maintain education for
staff.
It is clear that all of the work described above provides significant mitigation of
these risks; however more can always be done. Further work to be completed in
2014/15 to reduce the risks described includes:




To continue to expand flagging to Community and Children’s services.
Enhancing communication with patients, health care professionals and
external care providers, especially in preparation for patients with complex
needs relocating to community settings in Newcastle under the
“Transforming Care agenda”.
Continuation of mortality reviews of patients with a learning disability who
die whilst in Trust care.
Continuing the audit of documentation of best practice in relation to use of
pathways of care, provision of reasonable adjustments to meet individual
needs, hospital passports being utilised appropriately, and capacity
assessment and consideration of Deprivation of Liberty Safeguards, if
capacity is lacking.
12. SUMMARY
The Trust is demonstrating achievement against all six CQC requirements and is
now able to flag the patient record to alert professionals that patients have a
learning disability. Protocols and pathways are present to ensure needs are met
and are being integrated into Trust Policy and Practice.
7
The role of Learning Disability Team is highly valued by patients, carers and Trust
Clinicians, and continues to lead the development of Trust systems, processes
and staff education, all of which will help to ensure patients with learning disability
receive appropriate care.
The Trust is committed to working with other partners to ensure the needs of
patients are met.
13.
RECOMMENDATION
To i) receive the report and ii) note the progress made.
Helen Lamont
Nursing and Patient Services Director
Frances Blackburn
Deputy Director of Nursing and Patient Services (Freeman)
Alison Forsyth
Learning Disability Liaison Nurse
3rd December 2015
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Appendix One
CQC REQUIREMENTS
CQC REQUIREMENT
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?
TRUST ACTION/PROGRESS
The Trust is able to identify people with a learning disability on e-Record. Only
patients with a confirmed diagnosis are flagged.
The alerts audits have been developed to predict future weekly attendance of
Patients with learning disability.
RAPPA Email alerts received by learning disability liaison service if patient with
a learning disability dies to commence the mortality review process.
The development of a virtual ward to identify all inpatient stays across the Trust.
The Trust has demonstrated that it has successfully introduced Care Pathways
which staff are using to identify individual needs and reasonably adjust care to
meet those needs.
Work to provide flagging with community/children’s patient record systems will
be taken forward.
In accordance with the Disability Equality Duty of the
Disability Discrimination Act (2005), does the Trust
provide readily available and comprehensible
information to patients with learning disabilities about
the following criteria:
• treatment options (including health promotion)
• complaints procedures, and
• appointments
Within the Trust intranet an easy read information page has been developed
with a range of information including, Complaints, Mental Capacity Act
Guidance and specific health leaflets e.g., Colonoscopy and MRSA.
The Trust has purchased a number of Photosymbols 4 licenses to assist staff
develop additional easy read information. A number of easy read leaflets have
been developed including Cardiothoracic pre assessment, Hypertension
Service, Colposcopy clinic and Emergency Department.
All core “Coming into Hospital” leaflets have an Easy Read version.
9
Trusts has developed accessible films of Radiological Procedures for people
with a LD and are available via Trust Intranet or as a DVD.
DVD had been developed to explain the importance of the hospital passport.
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?
North of Tyne LD Liaison Nurses have developed care pathways for paid and
unpaid carers. A leaflet for carers of patient with a learning disability has been
developed and to be presented to the Patient Information Review Panel.
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 and/or induction programmes for
all staff?
Staff Induction now includes information regarding Learning Disability within
Safeguarding Adults Training. All E&D and HR training has been updated to
include Learning Disability Awareness. A training programme called “Patients
are People” is established which helps staff to consider the patient experience.
The day commences with production from The Twisting Ducks, a Theatre
Group of actors who have a learning disability, the session is very effective at
demonstrating a patients experience and challenges participants’ beliefs about
disability.
Within the Essential Communication Skills Programme, which the Trust
delivers, skills to aid communication between a patient with a learning disability,
carers and the professional are demonstrated.
The Trust has a mandatory BREEZE Learning Disability Awareness Package
as part of the mandatory training within the safeguarding domain.
The Trust are establishing learning disability champions across all sites, to raise
awareness of patients’ needs.
The Trust are developing a cohort of bank staff with additional learning disability
awareness training to support patients who need additional support or may
challenge services.
10
Learning disability newsletter is available quarterly, to raise awareness of
developments within the Trust.
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 interests in the planning and
development of health services?
The Trust has an established Learning Disability Steering Group, chaired by
Mrs Blackburn, Head of Nursing, the group also includes a patient
representative who has a learning disability and a Governor who brings the
carer perspective to the group and who also ensures Learning Disabilities has
an active voice within the Governors Council.
The Trust is also a proactive member of established regional forums including
the North East and Cumbria Learning Disability Network.
The Trust is offering work experience to young people with Learning Disabilities
with several young people on placement at present. Current placements include
Weight Management, Internal Medicine administration, Loan Equipment
Services, Sterile Services, Linen Room.
Does the Trust have protocols in place to regularly
audit its practices for patients with learning
disabilities and to demonstrate the findings in routine
public reports?
The Trust elicits patient feedback via questionnaire. The individual issues
raised are fed back to relevant staff and services and findings are reported via
the Learning Disability Steering Group, Patient Carer and Public Involvement
Group and Patient Experience Report on a regular basis and public Trust Board
Reports.
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Further developments planned in 2015/16 include:







Further development of easy read information for patients with learning disability.
The identification of learning disability link professionals and additional awareness sessions pertinent to the learning disability
patient.
To continue to collect patient feedback to inform future developments and share this within the Patient Experience report to
achieve greater staff awareness and understanding and wider public dissemination of these findings.
The development of a cohort of bank staff with additional awareness to support people with a learning disability who may need
additional support or challenge Trust services.
Clear procedures for the flagging of community and child patients.
Ongoing Audit of utilisation of Hospital passports, needs assessments and care pathways.
The learning disability liaison service is to provide placements for children, adult and learning disability branch nursing students.
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