Making the move from children’s to adults’ services can be a difficult period in young people's lives. Our guidance aims to help young people and their carers have a better experience of transition by improving the way it’s planned and carried out.
For many young people, transition will involve multiple services, including health, social care and education. Our guidance on transition from children’s to adults’ services covers the period before, during and after a young person moves from children’s to adults’ health or social care services. It sets out how this transition should be managed and how services should work together to support a good transition.
This guidance is supported by condition-specific recommendations on transition in many of our guidelines, such as those on epilepsy, diabetes, depression and autism.
The NHS Long Term Plan recognises the importance of this crucial period in young peoples' lives. It commits to selectively moving to a '0 to 25' service, offering person- centered and age appropriate care for mental and physical health needs, rather than an arbitrary transition to adult services based on age not need. This is supported by our guidance, which recommends that transition should take place at a time of relative stability for each young person and should not be based on a rigid age threshold.
My clinician set up a separate appointment date so that he could sit down with me, my parents and the adult side clinician who would be taking over my care. I think that personally for me that really helped me connect with that clinician and since then I’ve had a great relationship with him.
There's room to improve the provision of child to adult transition services
Epilepsy
Almost 60% of child and adult epilepsy services provided access to a transition clinic.
53% of trusts had a joint outpatient service for epilepsy, with both adult and paediatric professionals (Epilepsy12 organisational report, 2018).
Cancer
43% of hospitals had a policy for transition of care from child to adult oncology services (NCEPOD, cancer report, 2016).
Mental health
78% of general or mental health hospitals had a framework to facilitate continuity of patient care at the point of transition from child to adult mental health services (NCEPOD, mental healthcare report, 2016).
Autism
35% of local authorities gave their transition services for young people with autism a good rating. This means transition planning happened automatically. The figure is from from 39% in 2016 (autism self-assessment framework, 2018).
36% of adults with autism said they were fully involved when they went through the transition to adult services (All Party Parliamentary Group for Autism report, 2019).
To help healthcare professionals put our transition guidance into practice, we have published shared learning examples showing how services have implemented our recommendations.
In Southampton, a transition programme called ‘Ready Steady Go’ focuses on empowering young people and equipping them with the skills and knowledge to manage their own health care. The trust now delivers targeted ‘11+ clinic weeks’ 4 times a year across all clinical subspecialties. Another project, in Liverpool, focused specifically on improving care for young adults with diabetes. Changes included a clinic restructure, the addition of flexible drop-in sessions and the establishment of a peer-support group.
Both projects reported a reduction in diabetes-related hospital admission rates in young people using the transition service. This is important because recent analysis carried out by the Nuffield Trust found an increase in diabetes-related emergency admissions in young adults. There has been an overall decrease in these admissions in children and young people, but in young adults aged 20 to 24 they have increased from 70 admissions annually per 100,000 people in 2011/12, to 96 per 100,000 in 2017/18.
When I moved to adult services the junior doctor would not allow my mum to be with me for the admission. This was my first time being admitted as an inpatient on an adult ward, so this was an incredibly frightening experience for me.
Improving care during transition for young people with an eating disorder
Our guideline on eating disorders recommends that particular care should be taken to ensure services are well coordinated when a young person moves from children’s to adults’ services, or when more than 1 service is involved. However, in 2017 the Parliamentary and Health Service Ombudsman (PHSO) published a report called Ignoring the Alarms. This found serious failings in delivery of care and coordination for people with eating disorders during periods of transition such as from home to university.
Our quality standard on eating disorders reflects the PHSO findings. It identifies coordinated care across services and risk assessment when moving between services as priorities for quality improvement. Since the PHSO report was published, we have been working with national partners to support implementation of its recommendations and our quality standard.
In 2019, NHS England worked with NICE and the National Collaborating Centre for Mental Health to prepare guidance for commissioners and providers of adult eating disorders services. This sets out optimum models of service delivery, including how to effectively manage transitions in line with our recommendations.