Executive summary and Recommendations
Children and young people with learning disability have disproportionately high rates of mental health issues and behavioural difficulties, physical co-morbidities, adverse life events and poverty. It is estimated that between 4,121 and 12,362 children and young people with learning disability living in Scotland have mental ill-health, between 3,091 and 9,272 of who have persistent mental ill-health. They have been recognised to require improved access to community and inpatient mental health services.
There are no dedicated NHS mental health inpatient units in Scotland for children and young people with learning disability and/or autism spectrum disorder. While some are admitted to the 3 regional adolescent mental health inpatient units or the national unit for under 12s, this is not appropriate or possible for all.
The Scottish Government, NHS Scotland, Mental Welfare Commission and Kindred worked together to assess the need for specialist inpatient mental health beds in Scotland for this group.
Between 2010 and 2014 at least 45 children and young people with learning disability required specialist inpatient mental health care not available in Scotland. Instead they went to:
- Adult Learning Disability wards (including secure units) 30%
- Adult Mental Health units (including intensive care and secure units) 28%
- Child and Adolescent Mental Health Units 16%
- Not admitted 8%
- Pediatric wards 5%
- Specialist units in England: 13%
Average costs were upwards of £300,000 per patient per year.
Children and young people remained distressed and under-treated at home or in unsuitable units, sometimes with high use of sedative medication and restraint.
Families were highly stressed, managing severe self-injury, aggression and destructive behaviours in their children.
Some creative individual local solutions were found, but at a cost to the care of other patients.
Better clinical outcomes resulted from admission to specialist units in England, but distance led to dislocation from family and local services.
1. A bespoke national learning disability child and adolescent mental health inpatient unit, with 9 beds, located in Scotland. A more detailed specification is later in this Report.
- This will provide quicker, better planned, safer, more specialist holistic treatment closer to home, not a return to institutionalised care of the past.
- It is anticipated that average cost per admission per year will be less than for current unsatisfactory ad-hoc arrangements
- It will be for children and young people with more severe levels of learning disability, complexity and challenging behavior whose needs cannot be met on the existing Scottish child and adolescent inpatient mental health units
- The number of recommended beds assumes that adolescents with mild learning disability and/or autism spectrum disorder who need secure inpatient mental health care will be accommodated within the proposed Scottish secure/forensic adolescent mental health inpatient unit.
2. A national clinical network to support development of the unit and community services, linking with multiagency partners across Scotland.
3. Improvements in access to the four existing Scottish child and adolescent mental health inpatient units for children and young people with autism spectrum disorder and those with milder degrees of learning disability and less complex needs.
4. Additional training and support for staff at the four existing Scottish child and adolescent mental health inpatient units in order to improve outcomes for children and young people with autism spectrum disorder and those with milder degrees of learning disability who receive treatment in those units.
5. Development of the full range of community child and adolescent mental health services for children and young people with learning disability across Scotland.
6. Health and Social Care Partnerships to review community provision for children and young people with a learning disability and/or autism spectrum disorder in order to maximise appropriate use of a bespoke mental health inpatient unit and work with any new unit to ensure appropriate referral pathways and discharge planning.
7. Health and Social Care Partnerships and NHS Scotland must create clear pathways and commissioning arrangements to existing facilities, including those outwith Scotland.
8. NHS National Specialist Services Division should continue to ensure that pathways to specialist services in England are available for the occasions where an admission to a unit outwith Scotland would be more clinically appropriate.
Kathy Collins, Nursing and Quality Advisor, National Specialist and Screening Services Directorate ( NSD), Procurement, Commissioning and Facilities, NHS National Services Scotland
Deborah Dunn, Senior Programme Manager, National Specialist and Screening Services Directorate ( NSD), Procurement, Commissioning and Facilities, NHS National Services Scotland
Claire Edwards, Training and Consultancy (for Kindred, interviewer and author for family/carer interviews)
Margo Fyfe, Nursing Officer, Mental Welfare Commission ( MWC) for Scotland
Susie Gibbs, Consultant Psychiatrist, NHS Fife and LD CAMHS Advisor to Mental Health Unit of Scottish Government (main author and investigator)
Lauren Murdoch, Head of Mental Health Unit, Mental Health and Protection of Rights Division, Scottish Government
Sophie Pilgrim, Director, Kindred
Supported by funding from the Scottish Government Autism Strategy
Collaboration with LD CAMHS Scotland Network
Data analysis and admin support:
- Amy Robinson, Glasgow University LD CAMHS Models and Outcomes Study
- Amanda Saunderson, Programme Support Officer, Procurement, Commissioning and Facilities, NHS National Services Scotland