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Chapter 58

The role of the voluntary organisations in epilepsy

AMANDA CLEAVER

Communications Manager, Epilepsy Society, Chalfont St Peter, Buckinghamshire

Epilepsy Society and its aims

Epilepsy Society has been delivering expert epilepsy care for almost 120 years. The charity’s
founding fathers were pioneers of their time – providing employment and a safe place to live
for people with a much stigmatised condition. Today Epilepsy Society continues to be at the
forefront of the epilepsy world, providing expert medical services and leading the world in
epilepsy research. There are positive signs that epilepsy will disappear as a description of a
disease and be replaced by the knowledge that it is a collection of rare diseases with a
common feature: a predisposition to epileptic seizures.

Research

For the majority of people with epilepsy their greatest hope rests in finding a cure for the
condition. Epilepsy research receives no government funding. Voluntary organisations such
as Epilepsy Society, Epilepsy Action and Epilepsy Research UK contribute financially to
research programmes.

Epilepsy Society’s new research centre opened in March 2013 and is integrated with the
charity’s medical centre and magnetic resonance imaging (MRI) unit at the Chalfont Centre
in Buckinghamshire. Its research programmes are world-leading, providing a major
improvement in the understanding and treatment of epilepsy. For the first time there is a shift
from a model of treatment based on experience and observation to one based on a fuller
knowledge of the individual’s genetic profile and on a better understanding of the way in
which different anti-epileptic medications work.

Thanks to the charity’s MRI research programme, more people are undergoing surgery with
successful outcomes. More recently Epilepsy Society has been looking at the role of genetics
in the treatment of epilepsy. The results of that research could change the treatment of
epilepsy forever. With its renowned Sir William Gowers Assessment Centre and outpatients’
clinic linked to the National Hospital for Neurology and Neurosurgery, Epilepsy Society is
uniquely placed to translate research into clinical practice.

A new research resource, the Epilepsy Society Brain and Tissue Bank, was established in
2014 – the UK’s first dedicated brain and tissue bank for epilepsy. Based at the National
Hospital for Neurology and Neurosurgery at Queen Square, London, it provides a vital
research donation facility and central resource to support research into epilepsy.

Voluntary organisations and the NHS

The NHS five-year ‘forward view’ calls for a new relationship with patients, citizens and
communities, describing them as an ‘untapped resource’ for the NHS. It cites the voluntary
sector as partners with whom they will invest significantly in evidence-based approaches such
as group-based education for people with specific conditions and self-management
educational courses.