Transition in Epilepsy Services - The Association for Young People`s

Transition in Epilepsy
The Transition of Patients with Epilepsy from
Paediatric to Adult Care Services across the Aneurin
Bevan Health Board
Kostov, C., Lewis, H., Syed, N., Lawthom, C., James, L., Capeling, L., SpenderThomas, K., Barber, M.
Personal Reasons for Interest in Audit
 Paediatrics
 Personal experience of difficulties of falling
between paediatric and adult care
 Similar age to those transitioning
Background - Epilepsy
• Newly emerging sub-specialism
• Paediatricians developing specialist interest
• Transition is recognized as an area for
improvement in the care of young people with
• Joint clinics are emerging as a way of facilitating the
transfer to adult care
• First teenage epilepsy clinic – Liverpool 1991
• University Hospital of Wales, Cardiff - 1996 (17 years)
Specialist Tertiary Teenage Clinic
• ABHB – past 18 months
An Action Plan following the results of the
‘Epilepsy12’ National Audit suggested that ABHB:
“establish a transition care pathway
and to formalize handover clinics” 3
Objectives for Audit
1. Current Practice
2. Professionals’ perspectives
3. Views of patients and parents/carers
Case ascertainment
Records of notes of
discharged from
Paediatric Epilepsy
Specialist Nurse
Learning Disability
Transition Database
Consultant-led & Nurse-led
Transition Clinic Lists
What we did:
1. Case Notes Review
1. Questionnaire to professionals
2. Questionnaire to patients and
 19/34 (56%) of patients had learning disabilities
 22/34 (62%) had other co-morbidities (Cerebral Palsy,
Autism, Sensory impairment)
 24/34 patients were referred:
 7/24 (29%) of referrals made requested advice regarding
diagnosis, investigations and medication
 Only 13/24 (54%) referrals made based on age alone
First Appointments in Adult setting:
 16/22 (73%) patients attended a joint clinic:
 17/22 (77%) had additional problems recorded
 15/22 (68%) had medications altered
 Only
3 patients had transitional planning meetings recorded
2 attended by educational / social workers
 Only 2 patients had a transition coordinator documented
(62% had co-morbidities)
What did Professionals Think?
73% of Paediatric Professionals rated current transition as ‘Poor’
Confusion regarding Referral Pathways…
1. All to Adult
(A) Based on complexity and
control of epilepsy:
(B) Based on
2. Complex
epilepsy to teenage
clinic UHW, all
others to adult
4. Learning disability to
services and LD nurse,
all others to GP
3. Complex to
well controlled
to GP
(C) Based on complexity/control of epilepsy & whether
additional learning disabilities:
5. Learning disabilities to Psychiatrist, complex epilepsy to adult
neurologist, all others to GP.
10/11 (91%) of paediatric professionals felt a transition proforma
would be helpful…
Collaborative working between professionals:
 Only 4/8 (50%) of consultant paediatricians felt they work
closely with adult neurologists, and vice-versa 3/6 (50%).
 4/9 adult and 4/11 paediatricians ran transition clinics
 At handover, adult specialists wanted to know about
medication history, diagnostic work-up and lifestyle
 Information provided “incomplete” and “variable”
 8/20 (40%) professionals had received training in
 14/20 were aware of transition policies – only 3 felt able
to adhere to them
Views of Professionals
Main areas for improvement:
“Explicit transition care pathway”
“Better coordinated approach between Paeds and Adult
Neurology and Learning disability services, and health,
education and social services”
Views of Professionals…
“Current practice variable with no uniformity in provision of
transition services”
“It is crucial that ABHB recognize and support both
paediatric and adult epilepsy services in the implementation
of transition services/care”
What did Patients and Parents Think?
45% of patients and parents/carers found
transition ‘difficult’ or ‘very difficult’
 Some patients reported a “very traumatic experience” and
found it “difficult to cope with change”
Several thought the process should have started much
 6/11 (55%) attended joint clinics:
 5 patients thought they were helpful
 One parent reported the “first appointment was useful then
it drastically fell apart”
Did patients and parents/carers feel they received enough
 6/11 (55%) of patients felt supported throughout their
 5/11 (45%) felt in control of the process
Young people’s views:
“ I don’t think anyone feels in
control as
healthcare worker ‘knows best’ ”
“ I wanted better
understanding and to be
treated as an individual ”
Views of Patients and Parents / Carers
Difficulties faced in Adult Care:
“Confusion regarding person responsible for
providing/updating epilepsy care plan”
“All therapies..severely curtained leaving [young person] more
isolated and less likely to achieve any goals”
Views of Patients and Parents/Carers…
“Transition should start at 14 when multiple problems with
at least two appointments with consultants from
paediatrics and adults so that all information is handed
over properly”
“Information needs to be made more readily available..I
did feel somewhat ‘in the dark’ ”
“My paediatrician came to my first
with the neurologist. This was
helpful and
ensured a seamless transition”
 Transition is difficult for patients with epilepsy
 Joint clinics are deemed successful by patients
and professionals
 Transition overall is still rated poorly
Key elements for good transition:
• Patient centered transition plan
• All professionals working together towards a joint goal
• Training of professionals
• Resources
A process, spanning the teenage years.
What is needed?
 Care pathways to be refined
 Clarification of referral pathways
 Roles and responsibilities of professionals involved in
transition clearly defined
 Access to joint clinics
 Efficient transfer of information
 Case ascertainment – lack of database
 Retrospective analysis
 Risk of bias with questionnaires
• Good elements emerging
• Scope for improvement
and formalisation of care pathways –
clarification; promote equality of care
• Proforma
• Consider views of:
 Patients and parents/carers
 Professionals in primary health
 Paediatricians and Adult neurologists
 Learning disability services
..In medical and specialist nursing professions.
• Care pathways to be refined locally,
• collaborating widely
• specific needs of each patient - control of epilepsy,
extent of comorbidities, professionals involved in their
ABHB are currently developing an electronic database
- highlight patients approaching 14 years
Personal Reflections
 Difficulties of an Audit!
 Qualitative Data
 Working between paediatric and adult teams
 Patients and parents forthcoming and grateful for giving
 Huge amount of willingness and motivation for
Thank you.
Any Questions?
1. National Institute for Clinical Excellence (NICE). (2012). The Epilepsies: Diagnosis and Management of the Epilepsies in Adults
and Children in Primary and Secondary Care. Available at:
2. Department of Health (DH). (2008). Transition: Moving on Well. Available at:
3. Epilepsy12 Audit – Action Planning 2012. (2012). Gwent Action Plan. Available at:
4. Aneurin Bevan Health Board. (2012). Policy for Transition of the Young Person with Healthcare needs between Children’s
Services and Adult Services within the Aneurin Bevan Health Board.

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