Lincolnshire ICB Position Statement on Transition from Children’s Health Services to Adult Health Services
What is healthcare transition?
NICE guideline NG43 defines transition as “the purposeful and planned process of supporting young people to move from children into adults’ services”.
This should involve preparing the young person for moving to adult services, the formal transfer of their care to a lead adult health professional and the subsequent support to establish them in the adult service.
Developmentally appropriate support for young people in the adult service is as important as their preparation for transition to adult services in the children’s service.
The process should address the medical, psychosocial, educational and vocational needs of young people and young adults with chronic physical, mental, neurodevelopmental and medical conditions as they move from child-centred to adult-oriented healthcare systems.
Transition to adult services ensures that young people can access the most appropriate services according to their age, developmental needs and the nature of their long-term condition.
If young people are not adequately supported through transition, they may not engage with adult health care providers, and this increases the risk of deterioration of their long-term condition, and avoidable hospital admissions.
Transition to adult services can be a traumatic period for young people, who commonly fall between services or ‘disappear’ during transition, disengaging from services and becoming lost to follow up, only to present later in life with potentially avoidable complications.
Research by NCEPOD over an 18-month period (October 2019- March 2021) concluded there is no clear pathway for the transition from healthcare services for children and young people to adult healthcare services. Moreover, the process of transition and the subsequent transfer is often fragmented, both within and across specialties. Developmentally appropriate healthcare needs to be everyone’s responsibility and adequate resources need to be made available to allow this to happen The Inbetweeners_summary report.pdf (ncepod.org.uk).
Lincolnshire’s vision and mission for healthcare transition
The Lincolnshire vision for Transition is that all young adults with a Long-Term health condition (LTC), will make the transition from children’s services to adult provision and reach their potential, while receiving the support they and their families/carers need.
The mission is to help remove the barriers to delivering good transition to young adults with a long-term condition, complex needs, autism, learning disability or mental health conditions, by building bridges between adult and children’s service providers, reducing the numbers of children who disengage from services around the age of transition and the negative impact that this has on some young people.
This will be built on evidence and strengthen the partnerships that have been developed over recent years and will use this approach to inform all its activities. It will be inclusive, working with everyone who has an interest in resolving the issue of transition for young adults with a long-term condition, complex needs, or mental health conditions.
Aims
There will be a developmentally appropriate transition process, for children and young people with long term health conditions, which is safe and effective for the young person and their parent/carer. Ensuring that a successful, planned and coordinated transition happens for all children and young people regardless of need.
All providers and organisations should embed personalisation, ensuring transition focuses on the individual need of each young person moving through healthcare transition, empowering the young person to take control of their health, which includes shared decision making and a proactive transition plan.
Children and Young people (and their parents/carers) will have the skills and knowledge about their health condition which will enable them to be proactively informed and manage the transition into adulthood.
Young people with a long-term health condition who transition to adult services will be cared for in a developmentally appropriate way to ensure they remain engaged in their health care and have a good experience transition. For some young people this will include the ongoing engagement with parents and carers, and this should be agreed with the young person and reviewed consistently.
Principles:
- All providers and organisations involved in long term health care to have a named executive (or equivalent) lead for transition.
- ICB to have an oversight/assurance group in place, with Transition Lead representation from providers and organisations, to support integration and healthcare transition across partnership organisations to help consider wider determinants of health. Share best practice and learning for healthcare transition services across the ICS.
- Providers will work closely with all health, social care, education and voluntary sector organisations to ensure the transition process is inclusive and efficient for young person moving/transferring across different care settings.
- Transition will be considered whenever the ICB redesign/transform pathways and commission new services to ensure that no gaps are inadvertently created at the point of transition.
- All NHS Trusts to have a transition policy in place. All other providers commissioned by the ICB should consider transition in their service delivery.
- All Age Continuing Care plan transition in line with transition best practice.
When thinking about healthcare transition, safeguarding needs to be considered beyond the usual interpretation of child protection. For example, an approach to understanding and responding to the significant harm young people can experience at the hands of those beyond their family. It recognises that violence and abuse can be features of the different relationships young people form in their communities, educational settings and online.
Our population
The 2021 census showed there were 768 364 people living in Lincolnshire, 21.1% 161 200 were 0-19 years of age and there is expected to be a growth of 2% by 2024 (Joint Strategic Needs Assessment (JSNA) 2003).
16.9% have a long-term illness, disability or medical condition diagnosed at age 15 in Lincolnshire, compared to 14.1% in England (WAY survey, 2014/15). Around 10,850 children in Lincolnshire have a special educational need or disability (SEND) (based on 2022 SEND data returns)
Current situation
Mental health Conditions – Young people under the care of Lincolnshire Partnership Foundation Trust (LPFT) Transitioning to adult services :: Lincolnshire Young Minds.
In Lincolnshire, we already have flexible transition arrangements so that CYP coming up to 18 will either be supported out of mental health services or into the Adult Mental Health Service (AMHS), as part of these arrangements they may stay in CAMHS past turning 18 or equally could transition or access AMHS earlier, e.g. if they are just coming into mental health services at almost 18.
For those in the service before 18, the young persons lead professional will discuss if transition to adult mental health services is beneficial, 6 months before their 18th Birthday. If it is agreed with adult mental health services, the young person will be allocated a named worker, who will work with the CAMHS worker to ensure transition is successful and the young person knows what to expect. A transition plan will be agreed together, which includes the young persons views.
Long Term Health Conditions – Young People under the care of United Hospital Teaching Hospital (ULTH) Smooth transition: your journey into adult care – United Lincolnshire Hospitals.
Planning the transition for a young person with a long-term health condition will usually start at around the age of 13 or 14 years. Part of the transition process should be helping young people to look at where their on-going healthcare needs can best be met and how this will fit in with the young person’s future plans. In some cases, this may be their own family GP or in the adult services within the hospital.
SEND – Lincolnshire’s Inclusion Strategy – SEND transition strategy – Lincolnshire County Council.
Lincolnshire’s stakeholders across the SEND partnership are committed to provide support and resources that enable children and young people to move seamlessly between transitions. All with the ultimate aim of enabling children and young people to access the right support at the right time, while maximising their opportunities for achieving successful life outcomes as part of their preparation for adulthood.