Epilepsy: The RCGP clinical champions programme

pg 13 rogers bioEach year the RCGP chooses three clinical areas and supports efforts to raise the profile and awareness of these areas both within General Practice and across Primary Care. Each priority programme runs for three years and is led by a clinical champion.

It is the role of the clinical champion to then work in partnership with key stakeholders and seek to improve the care provided in this clinical area and patient outcomes. The proposal to elect epilepsy as one of these clinical areas came following a successful bid by the International League Against Epilepsy (ILAE) GP Epilepsy Society to who we are greatly indebted.

Why epilepsy?

There can be a tendency in Primary Care to see epilepsy as a specialist area and leave the care of people with epilepsy largely to Neurologists and Secondary Care. This possibly reflects only part of the story, as certainly the diagnosis and active management of complex epilepsy does belong in specialist hands. However for the day to day care and support for this group, Primary Care is ideally placed to contribute to improved seizure control and patient wellbeing and reducing unscheduled care. Also as it stands, the care of people with epilepsy is not perfect and the recent report from the All Party Parliamentary Group for Epilepsy2 revealed that around 69,000 people suffer from unnecessary seizures and that there are 400 avoidable deaths per year in England alone.

Key findings included:

• 73% of people who still have seizures have never been referred to a specialist centre

• 34% of trusts do not offer adults access to epilepsy specialist doctors

• 17% of clinical commissioning groups have appointed someone to lead on epilepsy

Other research indicates that:

• There is a 20% treatment gap in epilepsy seizure rates

• One in every three people with epilepsy will experience depression

• Only 22.7% of people with a learning disability are seizure free

The 20% Treatment Gap

Community based studies have revealed that whilst around 50% of people with epilepsy are seizure free this figure could be improved to around 70% using the treatments currently available, i.e. there is a 20% treatment gap3. This is of great consequence, for rendering someone seizure free reduces the risks of mortality and morbidity and allows people to live lives free from the consequence of having a seizure.

RCGP’s commitment

The Royal College of General Practitioners (RCGP) clinical priority area of epilepsy commenced in April 2013.

This programme of work is led by the Clinical Innovation and Research Centre (CIRC). The overarching mission of the programme is to:

“Improve the quality of care both clinically and holistically, in General Practice for people living with epilepsy” The RCGP aims to raise the awareness of areas selected as a clinical priority and build support for General Practitioners and their teams. This is achieved through building working relationships with relevant third sector stakeholders, opinion and policy makers to produce a range of educational, research and commissioning products.

Proposal overview

The overarching mission of the programme is to improve the quality of care both clinically and holistically, in General Practice for people living with epilepsy. Within this RCGP propose four key aims:

1. Reduce the treatment gap by way of education and programmes of work to reach people not accessing epilepsy care

2. Facilitate GPs to help reduce the psychosocial consequences of epilepsy and strengthen links to supporting stakeholders in this work

3. Encourage research and audit to further test and improve care for people with epilepsy

4. Increase the capability of epilepsy specialist care to achieve these aims by supporting further recruitment of GPs with extended roles in epilepsy

Across all the aims and objectives RCGP will aim to ensure there is increased awareness of epilepsy by NHS policy makers, primary healthcare professionals and the general public. This will hopefully be achieved through building relevant stakeholder relationships by pro-actively working with the ILAE, voluntary sector, enhancing links with NICE and the Department of Health, and working closely with the All Parliamentary Committee. We have only just begun this project but already we have been greatly  encouraged by the offers of support we have received, so please watch this space.


1. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care NICE Clinical guidelines, CG137 – Issued: January 2012

2. A Critical Time for Epilepsy in England, Epilepsy Action, 2013

3. Moran NF et al. Seizure, 2004,13, p425

4. Epilepsy and depression. Epilepsy Action. 22/10/13. https://www.epilepsy.org.uk/info/depression

5. Reuber, M et al. Seizure, 2008,17, p84