What is transitional care:
Rationale and evidence base:
NICE quality standards of transition:2
- 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.
- Young people who will move from children’s to adults’ services have an annual meeting to review transition planning.
- 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.
- 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.
- 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.
Implementation of the transition process:
- Annual review in a designated MDT transition clinic for all patients with known epilepsy from the age of 12 years.
- The composition of the transition MDT should ideally consist of a paediatrician with expertise in epilepsy, epilepsy specialist nurse, clinical psychologist, disability lead nurse and charity representative such as epilepsy action. Presence of these professionals may vary across hospitals in the region based on their local availability.
- One member of the MDT should be named as the care co-ordinator throughout the transition process (paediatric epilepsy nurse(s) are most often best positioned for this role).
- Pre-appointment questionnaires should be sent out to the young persons and their families to help identify key areas of importance to them (paper based or online survey). These questionnaires should be mindful to address additional social issues relevant to adolescents such as alcohol consumption, clubbing, contraception, pregnancy and driving. Some units may be able to offer pre-appointment virtual clinics, which can be used to identify these issues. Parent and Young person questionnaires are freely available as part of the “Ready, Steady, Go” program.
- A QOL scoring system should be implemented as an objective measure of progress, to highlight short-term issues and to help with long-term evaluation of local service performance.
- A standardised model of transition such as the “Ready, Steady, Go” program should be considered as a framework for clinicians to use throughout the transition process.
- From 16 years of age (this will be dependant on the developmental level of the young person and the clinicians assessment of their readiness for transition to adult services) at least one annual joint MDT to include a neurologist and specialist nurse from adult services should ideally take place prior to care being taken over by the adult services team. If joint MDT is not possible then the young person should have met members of the adult services team prior to full transition under their care.
- Transition to adult services should be achieved prior to their 18th birthday (although the optimal age will vary between young persons).
- Regular audit of the process should be undertaken to assess adherence to NICE standards and to assess the impact of the service on measureable outcomes such as attendance, compliance, AED polypharmacy and QOL measures.
Eastern Paedietaric Epilepsy Network: Epilepsy Transition Guidelines
Policy and Procedures for the transfer of Young People from Paediatric Epilepsy services to Adult Epilepsy Services. Available from: https://www.networks.nhs.uk/nhs-networks/eastern-paediatric-epilepsy-network/members-only/clinical-guidelines/epen-transition-guidelines
Transition from children’s to adults’ services. NICE quality standard QS140] December 2016.
This information is provided as a resource to HCP’s who prescribe or administer Buccolam.
Reporting of adverse events (Healthcare Professionals in the UK)