SNP CONFERENCE OCTOBER 2009
SCOTTISH DIVISION FRINGE EVENT SATURDAY 17
OCTOBER AT 12.30 IN THE CASTLE ROOM, PALACE HOTEL,
INVERNESS
Improving the mental health of young learning disabled Scots
Chaired by Mr Adam Ingram MSP, Minister for Children and Early Years
Speakers: Dr Ama Addo, Dr Susie Gibbs and contributions from family
members of service users.
Background
Scottish children and young people with learning disabilities have high mental
health needs, which often go unrecognised and unmet.
Whilst it is now
recognised that 1 in 10 of children and adolescents in the general population have
a diagnosable mental illness1, this rate increases four-fold for children and
adolescents with learning disabilities. Thus just under half of children with a
learning disability 2 will have impairing mental health disorders that are
diagnosable and for which help can be offered. Left untreated, such problems will
lead inevitably to further disability, significantly impaired quality of life, and
underachievement3. In Scotland4, there are therefore at least 9000* learningdisabled children and adolescents currently in need of access to appropriate
mental health services.
Reasons for the high overall incidence of mental health problems in children and
adolescents with learning disability include a wide variety of factors, such as
communication difficulties; higher rates of specific disorders such as autism;
higher rates of physical health problems (e.g. epilepsy) which are often severe,
multiple and complex; very frequent severe sleep disorders; increased risk of
abuse; lack of early recognition of mental health problems and lack of access to
appropriate mental health services leading to more severe and entrenched
presentations; being more likely to be ‘looked after and accommodated’ or live in
poverty.
Families dealing with their child’s complex physical and behavioural problems,
often with very little sleep and inadequate support, can, understandably, struggle
to cope. There are effects on the mental health of parents and siblings, with more
frequent family breakdown, especially where there are inadequate support and
Respite services
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Service provision in Scotland
Policy and practice in the past was for parents to be advised that their learningdisabled children be indefinitely admitted to hospitals/institutions, often from an
early age. With the closing of such institutions and the welcome shift to
community care, Scottish Mental Health Services have generally struggled to
develop timely services to meet the needs of these complex and vulnerable
children and young people, and some Child and Adolescent Mental Health Services
(CAMHS) have explicitly excluded them.
Services are very variable across the country, with mental health input, coming
from a variety of sources (life-span learning disability services, child
health/paediatrics, CAMHS, and more recently specialist learning disability CAMHS
teams), often according to local historic arrangements or the interests and drive of
local clinicians and managers.
Before considering mental health services for these children and adolescents it
should be noted that mental health and wellbeing requires more than the
treatment or absence of mental illness. It includes, amongst other factors, a
subjective sense of wellbeing, good self-esteem, a sense of self-mastery,
resilience and access to positive social relationships, creative and leisure activities.
This requires the same range of Voluntary, Health, Education and Social Services
available to non-disabled children and young people but which are adapted to
meet the needs of disabled young people and provided by staff with the necessary
training and expertise to provide health promotion and help prevent further
disability secondary to poor mental health. It is the experience of clinicians that
many of the learning disabled children and adolescents that they work with, are
frequently unable to access or actively excluded from a number of such services.
Scottish children and young people (aged 0-18) with the full range of learning
disabilities5 should also have access to professionals with the expertise to meet
their needs in all of Tiers 1-43 of mental health services. (see footnote). Over the
past 10 years specialist ‘CAMHS LD’ (mental health services for children and
adolescents with learning disability) teams have been set up in a small number of
Scottish Health Boards. However, even the most developed Scottish CAMHS LD
teams lack the resources that are available in other parts of the UK as
recommended by the National Services Framework6. There are still no specialist,
day and in-patient units in Scotland available to children and adolescents with
moderate to profound learning disabilities and severe mental illness. Learningdisabled children & adolescents were specifically excluded from the Child Health
Support Group In-Patient Strategy6 although it recognised that the specific
expertise and environment required to meet their needs is not generally available
within generic psychiatric in-patient units.
Footnote:
Tier 1: Universal primary services professionals to provide health promotion,
health advice and early identification of mental health problems.
Tier 2: Uniprofessional services to provide assessment, care and treatment as
well as advice to Tier 1 professionals
Tier 3: Multidisciplinary specialist CAMHS teams for the assessment and
treatment of more complex or severe mental health problems and who can
provide consultation to Tier 2 systems.
Tier 4: Highly specialised intensive out-patient services, day and in-patient units
which, as such may require to be supra-regional. These may also provide
education and training for professionals.
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As a result of unaddressed mental health needs, children and adolescents with
learning disabilities often cannot access education and their families may look
after them at home at great personal cost. They may be prescribed sedative,
rather than symptom-specific, medication to control their resultant challenging
behaviour, especially when community support services are not available. They
may be sent to expensive out-of-area residential schools or social care settings
which may not have the expertise available internally or locally to address mental
health needs. When severe mental health problems are appropriately diagnosed,
the lack of intensive community treatment capacity and specialist in-patient beds
mean that Scottish CAMHS LD Psychiatrists have to resort to ad-hoc local
arrangements. These may be provided by the good-will of services and colleagues
who may lack the required expertise and resources, including admissions of
children and adolescents to adult learning disability hospitals and paediatric
wards. Alternatively, some children are sent to CAMHS LD private or NHS inpatient units in England, a long way from their families, support systems and local
professionals who know them well.
Policy
The CAMHS Framework8 has led to considerable work being done to drive
improvements in generic Scottish CAMHS delivery. Children and adolescents with
learning disabilities are mentioned but not given the specific focus required to
lessen their unmet mental health needs. In recognition of this, the Mental Health
Delivery and Services Unit of the Scottish Government has commissioned a
document (in preparation) which will highlight the needs of this vulnerable group
and give guidance on how to implement the Framework in order that their needs
are met.
In England and Wales, following the National Service Framework6 the drive to
develop appropriate mental health services for children and adolescents with
learning disabilities has been facilitated by the Public Service Agreement (PSA)
Target 2005. This means that commissioners of CAMHS Services in England and
Wales are now measured using the following detailed definition: “The availability
of a full range of CAMHS for children and adolescents who also have a learning
disability. Services should be provided by staff that have the necessary training
and competencies to deal with children who [have] learning disabilities. Children
and young people with learning disabilities should receive equal access to CAMHS,
including: Mental health promotion and early intervention (including attention to
attachment and parenting issues); Training and support to front line professionals,
in particular in the recognition of normal development and developmental delay;
Adequately resourced Tiers 2 and 3 learning disability specialist CAMHS with staff
with the necessary competencies to address mental health difficulties in children
and young people with learning disabilities or pervasive development disorders;
and Access to Tier 4 services providing in-patient, day-patient and outreach units
for children and adolescents with learning disabilities and severe and complex
neuro-psychiatric symptomatology.”9
Setting targets for Scottish Health Boards for appropriate mental health services
for children and adolescents with learning disabilities would be invaluable in
highlighting their many needs and driving equitable and evidence-based service
development across Scotland.
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Summary and recommendations
Scottish children and young people with learning disabilities have high mental
health needs, which often go unrecognised and unmet. The result is significant in
terms of personal and family distress as well as having financial implications for
Social Care, Education and lifespan Health budgets. Progress is being made in
service provision but it is slow and patchy and needs a focus and policy-drive to
ensure that the needs of some of the most vulnerable and excluded of Scotland’s
young people are met. There is a need for a multiagency approach to service
development, policy and funding.
References
1. Mental Health of Children and Adolescents in Great Britain. Meltzer &
Gatward. Office for National Statistics © Crown Copyright 2000
2. Mental health of children and adolescents with intellectual disabilities in
Britain. Emerson, Eric; Hatton, Chris. The British Journal of Psychiatry. Vol
191: Dec. 07, pp 493-499
3. Developing Mental Health Services for Children and Adolescents with
Learning Disabilities. Ed. Dr Sarah Bernard & Professor Jeremy Turk
RCPsych Publications in collaboration with the National CAMHS Support
Service
4. General Register Office for Scotland* Calculated from 3.36% of the mid2007 Scottish population aged 5-18 years having a learning disability and
39% of them having a mental health disorder.
5. International Statistical Classification of Diseases and Related Health
Problems 10th Revision. WHO © Copyright WHO 1994
6. National Service Framework for Children, Young People and Maternity
Services: The mental health and psychological wellbeing of children and
young people. DoH 2004
7. Child Health Support Group: Inpatient Working Group - Psychiatric
Inpatient Services for Children and Young People in Scotland: A Way
Forward. Scottish Executive 2005
8. The Mental Health of Children and Young People: A Framework for
Promotion, Prevention & Care, Scottish Executive, Edinburgh 2005
9. Services for children and adolescents with learning disabilities and mental
health problems. A managed care approach. Summary. Foundation for
People with Learning Disabilities 2005.
Dr Ama Addo
Dr Susie Gibbs
September 2009
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