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Epilepsy Society has just come to the end of three years’ funding by the Department of Health
focusing on a community development project in six boroughs in north and east London. The
project worked in communities where there was little understanding about epilepsy –
primarily focusing on black, Asian and other minority ethnic groups. As a result of this work,
Epilepsy Society has developed a tailor-made epilepsy self-management course for people
living with epilepsy and their carers. The course has already been commissioned by Tower
Hamlets Clinical Commissioning Group.

Charities have become major suppliers of commissioning support in the restructured NHS,
supplying intelligence and helping redesign services. The first-ever national nurse consultant
for epilepsy commissioning was created in 2013, funded in the first year by Epilepsy Action
and subsequently by Epilepsy Society. Juliet Ashton is the first nurse in this post. Her role is
to provide expert advice to clinical commissioning groups and strategic clinical networks in
order to improve local services and outcomes for people with epilepsy. Her work involves
analysing neurological conditions admission data, auditing neurology services, carrying out
service mapping, designing an integrated care pathway, making a business case for extra
resources, and developing training and increasing awareness among GPs and neurologists.
This work has proved to be a ‘win-win’, with improved outcomes for patients and cost
savings on inefficiencies.

Influencing policy

Voluntary organisations have an important role to play in influencing policy. They are the
patient representative and are able to bring the patient voice to the decision-making process.
With the squeeze on NHS finances the move towards increased prescribing of generic drugs
has been a hot topic for debate. For people with epilepsy, prescribing issues centre on
consistency of supply rather than favouring a branded product over a generic product.
Updated guidance from the Medicines and Healthcare Regulatory Agency (MHRA) explains
how doctors can write prescriptions to ensure consistency of supply for individuals with
epilepsy – but the epilepsy charities have expressed concerns at the way some drugs have
been categorised in that guidance. Working with Epilepsy Action, Epilepsy Society has been
collating evidence about the effect drug switching can have on patients and encouraging
patients to share their experiences via the Yellow Card reporting scheme.

The united voice of the epilepsy charities has also resulted in new warnings about use of the
epilepsy drug sodium valproate for women of child-bearing-age. Epilepsy charities have been
campaigning for stronger warnings about risks associated with the drug and the effect on the
unborn child. Earlier this year the MHRA issued new guidance stating that valproate should
not be prescribed to female children, female adolescents, and women of child-bearing
potential or pregnant women unless other treatments are ineffective or not tolerated.

Helplines and other support

A number of UK voluntary organisations provide helplines. Epilepsy Society’s helpline is
accredited by the Telephone Helpline Association for the quality of the service it provides.
A translation service is also available. Epilepsy Society helpline staff are trained to a very
high level. Many of the calls they receive begin as a seemingly straightforward request for
information, and then develop into a more intense conversation in which the caller begins to
explore areas of deeper concern. The helpline also answers calls from medical professionals.
Young Epilepsy offers a helpline service and Epilepsy Action’s helpline is a freephone
number.

Epilepsy Action has a network of support groups across the country. Individual groups, such
as Gravesend Epilepsy Network, provide local support.