POLICY AND PROCEDURES
For the transfer of young people from paediatric epilepsy services to adult epilepsy services

What is transitional care:

Transition is a period of planned and structured multidisciplinary review between both paediatric and adult teams with the aim of optimising the care and treatment of a young person with epilepsy as they move from children’s to adult services.1
Transition should be a smooth and gradual process that covers the period before, during and after a young person moves from children’s to adult services. It should aim to address the individual medical and psychosocial needs of the individual and their families/carers in order to empower them with the skills necessary to manage their long-term condition.1

Rationale and evidence base:

“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” 1.
The institute of public policy research have highlighted the importance of patient empowerment in improving outcomes and reducing long-term cost to the NHS1.

NICE quality standards of transition:2

  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.
  2. Young people who will move from children’s to adults’ services have an annual meeting to review transition planning.
  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.
  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.
  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.

Implementation of the transition process:

The implementation of a transition process at an individual hospital level will inevitably vary based upon the local availability of funding and resources such as epilepsy specialist nurses, psychological input, clinic space and inter-departmental co-operation between adult and children’s services. The following is one proposed model, which may not be appropriate for all.1
  1. Annual review in a designated MDT transition clinic for all patients with known epilepsy from the age of 12 years.
  2. 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.
  3. 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).
  4. 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.[10]
  5. 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.
  6. A standardised model of transition such as the “Ready, Steady, Go”[10] program should be considered as a framework for clinicians to use throughout the transition process.
  7. 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.
  8. Transition to adult services should be achieved prior to their 18th birthday (although the optimal age will vary between young persons).
  9. 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.

References:

  1. 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

  2. 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)

Adverse events should be reported. Reporting forms and information can be found at: www.mhra.gov.uk/yellowcard or search for MHRA Yellow Card in the Google Play or Apple App Store. Adverse events should also be reported to Neuraxpharm. at: pv-uk@neuraxpharm.com