Transition from children's to adults' services
Children and young people with epilepsy may have to negotiate more hurdles and obstacles than their peers when making important future plans and decisions.
For some children and young people the move from paediatric to adult services can be abrupt, or even worse, no arrangements are made at all.
According to the ‘Transition of children and young people to adult services – Best practice guidance summary document’ Pathan, Wearmouth and Wooler 2015, ‘The outcome of poor transition from paediatric to adult healthcare services can be poor compliance with treatment and less successful self-management. It can also affect the health and wellbeing of family and carers, which in return directly impacts on young people and their resilience.’
Epilepsy Action supports the NICE guidance ‘Epilepsy in children and young people Quality Standard QS27, Quality Statement 9 – Transition from children to adult services:
‘The need for continuity of care during transition from paediatric to adult services is particularly important for young people managing the physical and mental transition from adolescence to adulthood. Good management of this transition period by healthcare professionals is vital to develop and maintain the self-esteem and confidence of the adolescent with epilepsy. It also provides an important opportunity to review the diagnosis, classification, cause and management of a young person's epilepsy before they enter adulthood.’
Ready, Steady, Go transition programme
Many paediatric epilepsy services use the ready, steady go programme to improve the transition to adult care, developed by Southampton Children’s Hospital.
If you would like to use the Ready Steady Go transition programme in your hospital, please contact Dr Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care on ReadySteadyGo@uhs.nhs.uk
NICE guidance (NG43) - https://www.nice.org.uk/guidance/ng43
- Involves young people and their carers in transition service design, delivery and evaluation
- Ensures transition support is developmentally appropriate
- Strengths-based and focuses on what is positive and possible for the young person rather than on a pre‑determined set of transition options
- Uses person-centred approaches
- Recommends a smooth and gradual transition for young people
NICE quality standard (QS140) - https://www.nice.org.uk/guidance/qs140
This quality standard covers all young people (aged up to 25) using children’s health and social care services who are due to make the transition to adults’ services.
- Statement 1 - Young people who will move from children's to adults' services start planning their transition with health and social care practitioners by school year 9 (aged 13 to 14 years), or immediately if they enter children's services after school year 9.
- Statement 2 - Young people who will move from children's to adults' services have an annual meeting to review transition planning.
- Statement 3 - Young people who are moving from children's to adults' services have a named worker to coordinate care and support before, during and after transfer.
- Statement 4 - Young people who will move from children's to adults' services meet a practitioner from each adults' service they will move to before they transfer.
- Statement 5 - Young people who have moved from children's to adults' services but do not attend their first meeting or appointment are contacted by adults' services and given further opportunities to engage.
The Walton Centre transition animation
Most young people with epilepsy will face the move from children’s services to adult services at some point. The Walton Centre commissioned this animation to explain what it will be like.
The animation was developed as one of the study outputs of a research project exploring knowledge of epilepsy during transition, funded by the Burdett Trust for Nursing as part of their Transitional Empowerment Programme. Young people attended up to four focus groups contributing their experiences to develop the animation plus additional resources including leaflets and the programme for a series of transition workshops.