Yvonne Owen Epilepsy Transition Coordinator

NCHG & Epilepsy Ireland

Developing and Standardising Transition Services in Epilepsy Care-

a coordinated approach

Aims of Transition

• Patient centred • Age appropriate • Individualised • Well informed patient / family • Improve sense of control and

independence • Develop skills in communication, self

management, decision making and advocacy

• Maximise capability regardless of ability • Support and guidance to family • Continuous care • Collaboration between services • MDT approach • Improved satisfaction with services • Improved health

Children’s

Services

Aim to

prepare well

Adult services Aim for long term Retention

Prevent rebound

Prevent falling through the gaps

Specific challenges in Epilepsy

SERVICE BASED

• Variation of services across sites

• Under care of Neurology, Paediatricians, GPs

• Wide ranging complexity of patient profile

• Large patient numbers

• Variation of resources between sites

• Wide distribution of patients to variety of adult sites

• Limited resources to introduce transition programme

• Change to routine

• Changes to staff

• Temporary role of coordinator

PATIENT BASED

• ↑ prevalence of intellectual or behavioural comorbidities

• ↑ risk of psychopathology for adolescents with epilepsy compared to healthy peers and peers with other chronic conditions

• Poorer social outcome for individuals with epilepsy (without ID) in terms of education and vocational status , psychiatric disorders and social interaction

• ↓ social participation and ↑ social isolation compared to peers

• Even “benign” remitting epilepsy have worse the social outcomes compared to other chronic conditions

• Families also experience social isolation, relationship problems and parenting problems

• Stigma /disclosure issues • Engagement of YP

Identifying Key Objectives

Review of existing services

Engage with Key stakeholders- Young people, parents, MDT

10 Key objectives

Proposed Epilepsy Transition Pathway 11/15/2017YO

PAEDIATRIC

Neurology

Clinic

Encourage teen

participation in clinic

Agree if ready for

transfer

Transfer to

ADULT

Neurology

Service Adult

transition clinic

Pre Clinic

Visit to

Adults

3rd

Transition

checklist

Introduce concept

of transition

Prepare Transition Pack

Explain and offer

split visits

STEP 1

AGE

12-14

STEP 2

AGE

14-16

STEP 3

AGE

16+

1:1 Consultation if

necessary

Adolescent Group

Education Session

Adolescent Clinic if

available

Receive

transition

information

2nd

Transition

checklist

Receive

introduction

booklet

Ensure on

registry

1st

Transition

checklist

Neurology Clinic

STEP 4

AGE

16+

Receive adult

service leaflet

Review

checklist in

adults

YES-Refer

to adults

NO-Wait

for 6/12

6

Beaumont Hospital St James’s Hospital

1 Paediatric REC 2 Adult REC

Cork University Hospital 1 Paediatric REC

1 Adult REC

University Hospital Galway Adult REC

1 Prof of Paediatrics (sub specialty in Neurology)

Sligo University Hospital Adult REC

2. Improving access to services

University Hospital Limerick Adult REC

1 Paediatrician (sub specialty in Neurology)

3. Transition Registry

• Established in 3 sites • Identify epilepsy patients by age • Flag who is due for transfer • Input what transition intervention was given • Identify adult service and status of referral • Log if Transfer pack completed • Log date of transfer • To come- Log follow up call (6 months after transfer)

4.Standardised Transfer Checklist

• Patient Demographic • Referring Hospital, consultant and

contact details • Adult service details • Checklist of contents of transfer

pack- • EEG • MRI • Letters • Prior Medications • Neuropsychology • MDT reports

5.Information Tools and Resources

• Transition Advice line

• Teen and Transition booklet (draft)

• Adult Services Directory

• Adult Service leaflets

• Regional talks to teens and parents

• EI Website developments

6. Transition Interventions

PAEDIATRICS • Adolescent Clinics

– TSCUH - ANP led clinics every 2-3 months

– OLCHC – consultant led beginning Jan 2018

• Adolescent Education Sessions – Group sessions in TSCUH since

2016 (6 weeks) – Developing group education

programme (2hr) pilot in OLCHC

– parallel teen and parents groups,

– MDT input – Nursing, Psych and Social work input where possible.

ADULTS • Beaumont Hospital

– Designated consultant – MDT Meet & Greet (3 per year) – Specific Transition clinic monthly – 60 referrals in 2017

• St James’s Hospital – Designated consultant – MDT Meet and Greet – Patient appointments for epilepsy

clinic arranged as per need – 29 referrals in 2017

• University Hospital Limerick – 1st transition clinic in 2018 – Plan for 2 clinics annually

Young Person

Psychosocial

• Feelings + Mood

• Friends

• Relationships

• Family

• Disclosure

• Stigma

• Support

Health & Lifestyle

• Alcohol /drugs

• Sport

• stress

• Diet

• Sleep

• Travel

Education & Vocation

• Study

• Exams

• College

• Career choices Sexual Health

• Puberty

• Contraception

• Folic acid

• Pregnancy risks

Self Advocacy

• Speaking up

• Being heard

• Getting involved in care

Independent Health Behaviour

• Epilepsy knowledge

• Triggers

• Treatment & adherence

• Adult services

TRANSITION CLINIC Dedicated clinic for young people Offered time alone Adolescent Checklist COVER 6 Core concepts

7. Staff Education and Support Coordinator role to support and facilitate delivery of services

– Provide updates to team on service

– Liaise and engage with teams regionally to explore opportunities for transition

– Provide supportive resource to tools to facilitate successful transition

– Plan to facilitate an Adolescent health and transition study day in future for HCPs.

– Explore opportunities to engage with staff in paediatric sites to

8. E Health integration

• On-going engagement with local IT teams and EPR team

• Pursue options of EPR in paediatric setting where possible

• Develop specific transition enhancements for EPR

• Engage with NCHG regarding IT requirements

9. Transition Policy Development

• NCCP P+N Transition Working Group • Online survey of HCPs views on Transition • 128 responses

• Currently drafting national document on guiding principles for transition for all chronic diseases and supportive resources.

10.Research and Audit

• RCSI Epilepsy Partnership in Care (E-PiC) study – YP Focus Groups

– Transition Workshop

• TSCUH STAR study (Crowley et al 2017) – Parent focus groups

– Group sessions

• Audit of Beaumont Hospital service, Transfer documents

• Measureable parameters for interventions

yvonne.owen@cuh.ie