Managed Clinical Network for Epilepsy in Wales

1. Managed Clinical Networkfor Epilepsy in Wales • Carrie Hammond • Network Coordinator

2. What is a Managed Clinical Network? • “linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and Health Board boundaries, to ensure equitable provision of high quality clinically effective services” • WHC (2005) 076

3. “engines of improvement” WHC (2005) 076

4. Epilepsy Service Development Directive • January 2009 • no paediatrics • no money

6. Phase 2: Core Service Developments - For delivery during 2008/09 and 2009/10

7. Scaffolding already there… • Clinicians • Specialist Nurses • People with epilepsy

8. £££ • Initial administration costs for the Managed Clinical Network have kindly been made available through the Association of the British Pharmaceutical Industry (ABPI) Cymru Wales Neurology Subgroup.

9. Basic Ingredients Experience suggests that developing an MCN requires at the outset a small team of people to drive the process forward. • Coordinator • Membership • (>70 members have to date registered an interest in the MCN)

10. Network Aim • To coordinate and facilitate the work of epilepsy professionals in Wales, promoting adherence to national guidelines, and building efficient and effective epilepsy care.

11. Network Objectives • The MCN should improve the quality of life for people with epilepsy by: • Capturing the opportunities of the Wales NHS’s change to integrated care • Encouraging efficient and effective services, in the most suitable setting • Reducing harm, waste and variation in epilepsy service delivery • Empowering patients with epilepsy by equipping them to be full participants in determining their care

12. Network Principles • Timely and correct diagnosis • Timely and correct management • Multidisciplinary working • Patient empowerment

13. 1. Timely and correct diagnosis • Specialist in the epilepsies • 2-week wait (NICE) Right place, right time

14. 2. Timely and correct management • Anti-epileptic medication • Tertiary referral (surgery) • Holistic approach to care Right choices, first time

15. 3. Multidisciplinary working • Neurologists • Neuropsychiatrists • GPs • Epilepsy Nurse Specialist • Voluntary Organisation • Social workers Working together

16. 4. Patient empowerment • Question prompt sheets • Agreed information sheets • Copying letters to patients Handing back

17. ♦ Percentage of children with epilepsy with evidence of input by ‘Consultant Paediatrician with expertise in epilepsies’ by 1 year ♦ Percentage of children with epilepsy with evidence of input by Epilepsy Specialist Nurse by 1 year ♦ Percentage with evidence of appropriate clinical assessment at first paediatric assessment ♦ Percentage with no evidence of withdrawal of diagnosis of epilepsy by 1 year ♦ Percentage diagnosed as epilepsy with evidence of seizure classification by 1 year ♦ Percentage diagnosed as epilepsy with evidence of epilepsy syndrome or syndromal category classification by 1 year ♦ Percentage having no evidence of inappropriate EEG ♦ Percentage with indications for neuroimaging having neuroimaging by 1 year ♦ Percentage with convulsive seizures having 12 lead ECG by 1 year ♦ Percentage females >12 years old commenced on epilepsy medication with evidence of discussion regarding pregnancy or contraception related issues ♦ Percentage commenced on carbamazepine with absence of contraindications for carbamazepine ♦ Percentage meeting referral criteria for tertiary involvement with evidence of tertiary care input by 1 yr. 1) Per cent of adults with epilepsy with evidence of input by a ‘Specialist in epilepsies’ by 1 year. 2) Per cent of adults with epilepsy with evidence of input by Epilepsy Specialist Nurse by 1 year. 3) Per cent with evidence of appropriate clinical assessment at first secondary care assessment. 4) Per cent with no evidence of withdrawal of diagnosis of epilepsy by 1 year. 5) Per cent diagnosed as epilepsy with evidence of seizure classification by 1 year. 6) Per cent diagnosed as epilepsy with evidence of syndrome category classification by 1 year. 7) Per cent having no evidence of inappropriate EEG. 8) Per cent with indications for neuroimaging having neuroimaging by 1 year. 9) Per cent with convulsive seizures having 12 lead ECG by 1 year. 10) Per cent females aged 16–45 years old commenced on epilepsy medication with evidence of discussion regarding pregnancy or contraception related issues. 11) Per cent prescribed carbamazepine with absence of contraindications for carbamazepine. 12) Per cent meeting referral criteria for tertiary referral and evidence of tertiary care input by 1 year. Audit • Promoting adherence to national guidelines “Epilepsy 12” Royal College Paediatrics

18. May 28th 2010- MCN Launch • Now the virtual Network is established, there is a planned opportunity for members to determine what the MCN should prioritise as important objectives. 

19. Moving forward together • Plan audits • Agree information sheets • Register of rarities • Jointly seek new drug approval • Plan educational activities • Facilitate research

20. Phase 3: Building Blocks for Long Term Sustainability – To be delivered 2010/11

21. Capturing Opportunity • The epilepsy MCN is a prime example of capturing the opportunity of the newly integrated NHS, in that it brings together epilepsy clinicians and services in primary, secondary and tertiary care. • We hope that all Health Boards will support the Managed Clinical Network in its endeavours to drive the continuous improvement of care in line with the SDD.

22. Capturing Opportunity • The ability to describe and monitor existing services is an essential prerequisite to improvement. • Health Boards can play an important role by defining their existing designated services for people with epilepsy, in collaboration with the MCN. This will allow assessment of services to ensure they are provided to a comparable level across Wales.

23. Capturing Opportunity • The MCN should be seen as an integral part of the local health plan and local health service delivery, not some disconnected or isolated development.

24. How can we ensure that people with epilepsy can access the right services at the right time and in the right place?