National Transitions to Adulthood - strategy for young disabled people: supplementary report

Health and Mental Health

Health and mental health transitions are often described as a “cliff edge” where paediatric care ends, and adult services feel fragmented and unfamiliar. For young disabled people and their families, this shift can be disorienting, stressful, and feel inequitable. From transition nurses and health passports to integrated planning, we are committed to building a system that supports health and mental health wellbeing throughout the transition to adulthood.

Research and stakeholder engagement to develop the Strategy highlighted that while many young people have positive experiences of children's health services, there can be fewer positive experiences when transitioning to adult services. Challenges highlighted included: difficulties navigating more complex and disjointed adult services, where information-provision is often inadequate, and where a greater degree of clinical autonomy and self-management is assumed; and changes in eligibility for, or loss of, certain supports between child and adult services can occur.

This was also reflected in responses to the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill consultation, where well-supported holistic paediatric care ends abruptly, and no equivalent adult service is available. Young people and their families have reported losing eligibility for essential supports during this transition, even where no change in their condition has occurred.

Many young disabled people rely on multiple health services to meet all their distinct needs. These may be spread across different departments, hospitals, or localities, sometimes far from home. This fragmentation can create logistical and emotional strain, and in some cases, leads to family members becoming the default coordinators of care. During our engagement, some stakeholders described situations where parents and carers had to give up employment to manage appointments, advocate for their children, and ensure continuity of care.

Our engagement developing the Transitions Strategy also highlighted good practice within healthcare transitions, including:

• Early transitions planning meetings, involving both child and adult health and social care services as a minimum.
• Involvement of a keyworker in health e.g. a transition nurse and GP to ensure that young people have a point of contact and continuity throughout their wider transition.
• Effective co-ordination of tools such as Digital Passport developed by the organisation Promoting a More Inclusive Society (PAMIS) with support from the Scottish Government. These have been found to be effective at promoting positive relationships, high-quality clinical care, and efficient exchange of data.

What is already happening

NHS Boards in Scotland are responsible for planning and delivering appropriate healthcare services in their local area and ensuring access to appropriate healthcare out with the Health Board boundaries through a Service Level Agreement. We have already taken some steps to improve transitions in healthcare:

• The Respiratory Care Action Plan (RCAP) 2021-2026 commits to ensuring that all children transitioning to adult respiratory services go through a dedicated transition service. The child to adult transition sub-group published a Best Practice guideline in March 2025, which will support NHS boards to meet national standards for transitions.
• Through our Neurological Care and Support Framework 2020-25 we funded NHS Ayrshire & Arran, Cerebral Palsy Scotland, and ARC Housing to undertake an evidence review and collaborative work towards developing neurology-specific principles of good transitions across care settings and across the lifespan. This produced evidence on the impact of good practice in transitions for people with neurological conditions, a published literature review, and some neurology specific guiding principles to inform best practice.
• The Scottish Government continues to provide funding to Spina Bifida Hydrocephalus Scotland, towards delivering their service for young people between the ages of 12-24. This includes a Young Peoples Transition Worker to assist young people through the transition to adult health and social care services, and support for NHS Scotland’s first transition clinic for young people with spina bifida and/or hydrocephalus.
• The Scottish Government’s approach to long term conditions policy has previously focussed on improving care and support for a limited number of conditions, with individually published strategies, frameworks, plans (such as those noted above). However, we are now exploring a new long term conditions strategy to better recognise that many people living with long term conditions need the same types of support and care, regardless of condition .
• In December 2024 we made available the GIRFE ‘Team Around The Person’ toolkit which was co-designed with people with lived experience, to support Health and Social Care Partnerships and NHS Boards across Scotland to plan and embed GIRFE in their local areas.
• The Scottish Government is currently working Health and Social Care Partnerships and NHS Boards to continue to embed GIRFE and the toolkit, including tools to support the transition from children to adult services.

In 2018 the Scottish Government published the Transition Care Plan Guidance, describing the standards required in the planning of good transitions for young people moving from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services. This approach promotes flexibility for those aged 18-25 to continue their care and treatment with CAMHS, when in their best interests, rather than automatically transfer to adult services. We also published the CAMHS National Service Specification in 2020, and this was mentioned by stakeholders as supporting transitions between adolescent and adult mental health services.

What else we will do

The Scottish Government is keen to further understand and bring together sector-specific learning and help to promote good practice in relation to healthcare transitions within a policy context. Therefore, we will:

• Continue to provide funding to Spina Bifida Hydrocephalus Scotland in 2025/26, towards delivering their service for young people between the ages of 12-24, including their Young People’s Transitions Worker.
• Explore with PAMIS opportunities to widen use of the Digital Passport to support young people with complex needs in transitions.
• Establish and facilitate a short-life group of key health stakeholders and Scottish Government policy officials to consider the learning from the work being taken forward by the Children with Exceptional Healthcare Needs (CEN) Network and the Royal College of Physicians Edinburgh’s working group.
• Engage with Health Improvement Scotland (HiS) to assess the feasibility and benefits of developing Scotland-specific transitions guidelines for health and identify potential areas of improvement support HiS can offer.
• Regarding a long term conditions framework, a series of advisory groups will be set up to develop recommendations for the new administration to consider.
• NHS National Education for Scotland (NES) is developing education materials to support GIRFE implementation and help practitioners understand how to apply the approach and tools within their area of practice.