Date published: 12 October, 2023
Date last updated: 12 October, 2023
Children and young people

National bundle of care for children and young people with epilepsy: appendix 7

Framework for transition provision for children and young people with epilepsy from paediatric to adult services.

The below contains a framework for various domains of care that may be included during the transition process from paediatric to adult epilepsy services

Legend: A – Aspirational, D – Desirable, E – Essential

Complex epilepsy: The term ‘complex epilepsy’ has been used here to encompass those with drug refractory epilepsy requiring specialist tertiary epilepsy services. This may include the requirement for specialist drug treatments, ketogenic diet, Vagus Nerve Stimulation, and epilepsy surgery.

Domains

No

additional

learning needs

Mild Learning Disability and/or Autism

Moderate- Severe Learning Disability and/or Autism

(Needs significant support for care)

Complex epilepsy

    1. Planning for transition

Starting transition preparation

 

Aged 11+

A

A

A

 

Aged 13-15

E

E

E

    2. Transition – preparing CYP with epilepsy for transfer to adult services

Information delivery

 

  • Epilepsy

E

E

E

As per learning needs

  • Medication

E

E

E

  • Social issues (including driving)

E

E

A

  • Contraception and pregnancy

E

E

E

  • Education and employment

E

E

E

  • Safety

E

E

E

  • SUDEP

E

E

E

  • Where to get information

E

E

D

Gaining key skills

 

  • Engaging independently

D

A

A

As per learning needs

  • Managing own medication

E

E

A

  • Requesting prescriptions

D

D

A

  • Seeking help

E

E

E

Involvement of family/carers

D if YP agrees

D if YP agrees

E

E

Appropriate resources for learning needs

E

E

E

E

Annual meeting to review transition planning

E

E

E

E

Preparing for navigating services through adolescence and adulthood

 

  • Information about adult services

E

E

E

E

  • Consent for parents/carers to be involved post 16

D if YP agrees

D if YP agrees

E

D

  • Hospital passport

A

E

E

As per learning needs

  • Legal requirements for managing care, health and finance

A

D

E

  • Arrangements for admission during transition

E

E

E

E

  • Designated Key worker for transition

E

E

E

E

    3. Transfer to adult services

Local protocols for transfer destination

E

E

E

E

Transfer of information

 

 

 

 

  • In person

E

E

E

E

  • By written communication

E

E

E

E

Joint Transition clinic or MDT

D (E for those on sodium valproate)

E

E

E

Arrangements for admission during transition

E

E

E

E

Transfer plan for each service involved during transition

E

E

E

E

Referral to Adult medical specialities for CYP with multisystem conditions

E

E

E

E

Access to specialist treatments (medication such as CBD, VNS and epilepsy surgery)

E

E

E

E

Access to imaging under GA (e.g. surveillance imaging in TSC)

A

D

E

As per learning needs

Age at time of transfer

 

16 years

D

A

A

A

At end of secondary education (16-18  years)

D

D

D

D

At transfer from community paediatrics/CAMHS/Neurodisability (18-19years)

D

D

D

D

Before age of 19

E

E

E

E

    4. Post transfer: continued support to increase independence in managing condition

Information delivery

 

  • Epilepsy

E

E

E*

As per learning needs

  • Medication

E

E

E*

  • Social issues (including driving)

E

E

E*

  • Contraception and pregnancy

E

E

E

  • Education and employment including reasonable adjustments

E

E

E

  • Where to get health information

E

E

E*

Embedding key skills

 

  • Engaging independently

E

D

A

As per learning needs

  • Managing own medication

E

E

A

  • Requesting prescriptions

E

D

A

  • Seeking help

E

E

D

  • Booking own appointments

E

D

A

Arrangements for admission

E

E

E

E

* shared with parents/carers or Personal Welfare Deputy.

Communication between paediatric and adult neurology services in planning for transfer

Effective transition relies on communication between the CYP with epilepsy, their parents/carers and professionals across all disciplines involved in their care.

Improved communication between professionals may be achieved through local protocols involving:

  1. Referral proformas: these can assist in the transfer of information between paediatric and adult services
  2. Agreed transfer destination according to local resources and service set-up. An example is included in appendix 9
  3. Handover meeting between the paediatric epilepsy service and adult neurology service. This could be delivered by epilepsy specialist nurses
  4. Joint Transition Clinic between the Paediatric Lead Clinician and the Adult Lead Clinician. Should transfer destination protocols and handover meetings be working effectively, joint transition clinics may only be required several times a year in a service.

It is important to ensure that there should be an explicit agreement about the care of the CYP with epilepsy in the time period between the joint transition clinic and their first appointment in the adult service (e.g. in case of destabilisation of epilepsy or medication side effects and/or unplanned hospital admissions).

Date published: 12 October, 2023
Date last updated: 12 October, 2023