Children and young people with Learning Disability have disproportionately high rates of mental health and behavioural difficulties, physical co-morbidities, adverse life events and poverty. The need to improve their access to mental health services has been recognised over the last decade in Scotland. This inpatient needs assessment work forms part of the response to that need, alongside the ' LD CAMHS Models and Outcomes Study' which aimed to identify promising models of community service delivery (forthcoming).
There are no specialist mental health inpatient services for children and young people with learning disability in Scotland, many of whom are unable to access child and adolescent mental health inpatient units, of which there are 3 regional units for 12 to 18 year olds and one national unit for under-12s, in Scotland. Concerns have been raised about the impact of this situation on children and young people with learning disability, their families and the services which support them. Some children and young people with autism spectrum disorder but without learning disability have also reportedly had difficulties accessing appropriate mental health inpatient care. As the needs of these groups overlap, they were also included in the survey that underpins this work.
This report summarises and draws conclusions from data collected through survey and research work conducted over the period February to June 2015 with clinicians, families, carers, and NHS NSD in Scotland. It includes financial information and analysis. The work was led by Dr Susie Gibbs. The detail of the data and the methodology of the research are in the Appendices.
In order to give a contextualised picture of this assessment of mental health inpatient needs for children and young people in Scotland, this report begins by giving information on learning disability impact and prevalence in Scotland, mental health facilities for children and young people, problems of access to appropriate mental health facilities for children and young people with a learning disability, and an overview of policy developments.
1.1 Mental health of children and young people with learning disability
A learning disability is a significant, life-long condition with 3 components (Scottish Executive 2000):
1. A reduced ability to understand new or complex information or to learn new skills
2. A reduced ability to cope independently
3. Starts before adulthood with a lasting effect on the individual's development.
Estimates of prevalence of learning disability in the population vary. This population experiences high rates of physical and mental health co-morbidities, adverse life events and poverty ( LD CAMHS Framework Document, Appendix A2.2), and a wide range of factors contribute to health inequalities experienced by this vulnerable group, who are at increased risk of exposure to all of the major categories of social determinants of poorer physical and mental health (Public Health England, 2015).
A recent international review (Munir, 2016) concluded that the prevalence of learning disability in children and young people is around 1-3%, with prevalence of co-occurring mental ill-health being around 40%, and persistent mental ill-health around 30%. Based on the National Records of Scotland mid-2014 population estimate ( www.nrscotland.gov.uk) that there were 1,030,183 children and young people aged 0-17 in Scotland, there are likely to be between 10,302 and 30,905 children and young people aged under 18 years who have a learning disability. Therefore, it can be estimated that between 4,121 and 12,362 children and young people in Scotland have learning disability and mental ill-health, between 3,091 and 9,272 of whom have persistent mental ill-health.
It has also been estimated that these high rates of mental ill-health in children and young people with learning disability mean that this group accounts for 14% of the total child and adolescent psychiatric morbidity in Britain (Emerson et al, 2007).
1.2 Current access to mental health inpatient care
It is important to be clear that hospital admission for mental health problems can be required by any child or young person, with or without learning disability and/or autism spectrum disorder. In this context, admission is for mental health assessment and treatment, followed by discharge, not for long-term institutional care.
There are 3 regional Young People's Units ( YPUs) in Scotland, providing mental health inpatient assessment and treatment for adolescents aged 12 and over. These are in Glasgow, Edinburgh and Dundee and collectively serve the whole of Scotland. Caledonia Ward at the Royal Hospital for Sick Children in Glasgow was the National Child Psychiatry Inpatient Unit ( NCPIPU) (predominantly for under 12s) at the time of the survey. This has since moved to become Ward 4 at the Royal Hospital for Children at Queen Elizabeth Hospital. While these four units will admit some children or young people with learning disability and/or autism spectrum disorder, specialist learning disability and autism spectrum disorder children and young people's mental health inpatient units do not exist in Scotland. Children and young people with learning disability and/or autism spectrum disorder have been admitted to NHS and private mental health units in England, most commonly to those run by Northumberland, Tyne and Wear NHS Foundation Trust, and St Andrew's Healthcare in Northampton. An overview of inpatient provision in the UK for children and young people with learning disability is available (Lovell, 2011, currently being updated).
A 'snapshot' of numbers of children and young people aged under 18 with learning disability and/or autism spectrum disorder in mental health or learning disability inpatient beds in Scotland was available from the Scottish Government's Mental Health and Learning Disability Inpatient Bed Census carried out on 29 October 2014 (Scottish Government, 2015). Out of 50 children and young people aged under 18 in hospital on the day of the census, 12 had diagnoses of learning disability and/or autism spectrum disorder. Due to restrictions on data about small numbers of patients, further breakdown of which kinds of wards these children and young people were on is not available for publication. In England, a census of inpatients with learning disability found 165 (6%) were aged under 18 (Health and Social Care Information Centre 2015).
Clinicians working in the field face considerable difficulties in finding appropriate mental health inpatient facilities for children and young people with learning disability when required. Anecdotally, this has been particularly for those with co-morbid autism spectrum disorder and challenging behaviour and for those with more severe levels of learning disability. Numbers for individual clinicians have been relatively small, but the complexity/severity of the child or young person's difficulties and lack of appropriate services have led to some extremely time-consuming and expensive outcomes. Concern has been raised about negative experiences for patients and their families and also the impact on local services as clinicians attempt to 'cobble together' arrangements for individuals.
A number of children and young people have been admitted, often for long periods, to adult learning disability hospitals in Scotland or to NHS or private LD CAMH inpatient units in England. Regular funding of NHS admissions in England by NHS National Services Scotland and the linking of clinicians in the LD CAMHS Scotland Network has allowed the recognition that these situations are not 'one-off' but have been happening regularly to children and young people with learning disability from across Scotland. The present work resulted from this growing recognition of need, precipitated by a situation in 2014 when changes in NHS England commissioning arrangements further reduced access to specialist beds in England.
1.3 Background to policy development for specialist mental health inpatient provision for children and young people with learning disability
Children with learning disability used to be routinely admitted to institutional care in 'mental handicap' hospitals. Numbers reduced during the 1970s and 1980s and continued during the hospital closure programme to de-institutionalise care for people of all ages with learning disability that began in the early 1990s (Scottish Consortium for Learning Disability, 2014). However, specific plans were not made for children and young people requiring hospital assessment and treatment of mental health/behavioural problems after hospital closure programmes.
Problems of access to in-patient mental health provision in Scotland for children and young people with more severe levels of learning disability and the most complex difficulties has been recognised for some time. The last published policy document relating to mental health inpatient services for children and young people (Scottish Executive, 2004) specifically excluded those with learning disability from its remit, despite recognition that the specific expertise and environment required to meet their needs was generally unavailable in Scottish mental health inpatient units. A paper was later produced by the LD CAMHS Scotland Network and the National Inpatient Forum giving guidance to staff in young people's mental health inpatient units on the management of young people with learning disability (Appendix A2.1).
There was recognition by the Scottish Government in the mid-2000s of a lack of access to appropriate mental health services in general for children and young people with learning disability. Very different commitment and service responses were noted across the country, with a patchy and often isolated workforce. A Government-funded conference in Perth in 2008 – 'Better Health – Better Care: Delivering Better Mental Health Services for Children with a Learning Disability' brought together clinicians from across Scotland to look at epidemiology, begin mapping services, share clinical experience and network. This led to the development of the LD CAMHS Scotland Network, a multidisciplinary network of now over 190 clinicians from all Health Boards and relevant disciplines. This network collaborated with the Scottish Government Mental Health Division to produce the LD CAMHS Framework Document (Appendix A2.2), which gives guidance on how to implement the CAMHS Framework (Scottish Executive 2005) to improve the mental health of children and young people with learning disability. This document gives further relevant background information on the needs of this patient group, with reference to UK-wide reports, guidance and standards as well as initial mapping of Scottish services.
An action plan was then developed to support the development of appropriate services. This was overseen by the Government CAMHS Implementation Monitoring and Support Group, in collaboration with the LD CAMHS Network, Health Boards, National In-patient Forum, and NES ( NHS Education Scotland). Key points in the action plan included the need to:
1. Gather more information
a. via service and workforce mapping
b. on access to mental health services
c. on which service models work effectively
2. Develop the workforce via training, an LD CAMHS Network website and by further developing Network meetings
3. Develop links/embed in wider multiagency work-streams (regionally/nationally)
Full detail can be found in the document 'Improving Access to Mental Health Services for Children and Young People with Learning Disability in Scotland – June 21, 2011 – Action Plan and Report' at: http://www.gov.scot/Topics/Health/Services/Mental-Health/Strategy/Child-Adolescent-Services
Through this work there was recognition of the need to improve access for children and young people with learning disability to mental health provision across all the 'tiers' of CAMHS service, i.e. universal services, uni-professional targeted services, multidisciplinary specialist community teams, intensive community treatment, and inpatient services. The initial focus was on community services and a commitment was made in the Scottish Government Mental Health Strategy 2012-2015: 'We will work with clinicians in Scotland to identify good models of Learning Disability ( LD) Child and Adolescent Mental Health Services ( CAMHS) service delivery in use in different areas of Scotland or other parts of the UK which could become, or lead to, prototypes for future testing and evaluation'.
As a result, the Scottish Government Mental Health Division funded Glasgow University, in collaboration with the LD CAMHS Scotland Network, to carry out the ' LD CAMHS Models and Outcomes Study' in order to deliver on this commitment. An initial paper reviewed research on the experiences of service users and providers (Jacobs et al, 2015). Reports from the Models and Outcomes study, which focused on community LD CAMHS are being finalised. They will complement this report, which focuses on specialist mental health inpatient services.
As this needs assessment goes to press, a report commissioned by the English Department of Health has been published by the Council for Disabled Children – 'These are our children' (Lenehan, 2017). Lenehan's report is highly relevant to the children and young people described in this needs assessment, setting inpatient provision in the context of wider multiagency services and strategy.
1.4 Focus of this work
The focus of this work is on the need for inpatient mental health services for children and young people with learning disability (who also often have autism spectrum disorder) in Scotland. However, there is also recognition that some children who have autism spectrum disorder but no Learning Disability have difficulty accessing inpatient services. As there appears be an overlap, information on this group was also sought.
1.5 Potential impact of this work
Along with the LD CAMHS Models and Outcomes Study, this study will provide an important evidence-base for developing appropriate services across community and inpatient settings. As well as information from clinicians and NHS managers, it was equally important to establish the views of parents in order to inform proposals for changing services. Families have expressed many concerns about the current provision, but the short and long-term impact on them and their children is not fully understood.
The themes uncovered during this work also link to national concerns about people with learning disability having long admissions to out-of-area health and social care placements; these concerns are heightened by reports of poor or abusive care ( DOH, 2013). The findings from this work can helpfully inform recommendation 51 of 'The Keys to Life: Improving quality of life for people with learning disabilities' (Scottish Government, 2013), which is establishing data on out of area placements and making recommendations on how people with learning disability can be supported to live nearer their family in Scotland.