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Epilepsy Society’s regional information services operate at a local level in hospital clinics
and medical settings. Volunteers receive training in epilepsy and issues that arise from the
condition to enable them to carry out their information-giving role alongside the work of
neurologists and nurses. They are there to talk to patients while they are in the clinic waiting
area, providing them with a range of literature about epilepsy, signposting people to local
epilepsy support groups and other organisations with specialist knowledge.

Many Epilepsy Society volunteers have epilepsy themselves and have been recruited because
they have dealt with their own issues around the condition and have time to help others. In
some cases they are attracted to volunteering because the support and information they
required was not there for them and they do not want others to have the same experience,
while others had a good experience and want to give something back.

Thanks to the training they are given, volunteers appreciate the individual nature of the
condition and know that even if they have epilepsy themselves, their experience will be very
different to that of the patients they see. Many epilepsy specialist nurses appreciate the value
volunteers can add to the patient experience in their clinics. The volunteers are valued as part
of the team, providing an opportunity for people to talk through non-medical issues with
someone who has empathy and lots of time to listen, time that may be in short supply for the
nurse.

Raising awareness

Understanding and raising awareness of epilepsy among the general population and reducing
stigma around the condition is key to improving the lives of people with epilepsy. The
voluntary organisations have an important role to play, informing and educating.

Epilepsy can often be an isolating condition, but the internet is helping bring people together.
Most epilepsy charities are using Facebook and Twitter to communicate and connect and
Epilepsy Society and Epilepsy Action host popular online forums.

Making people more epilepsy aware is key to Epilepsy Society’s training programme. The
charity delivers a variety of training events to a wide range of clients, from carers, school
escorts and postgraduate students, to commercial organisations, GP surgeries and drug
company representatives.

www.epilepsysociety.org.uk

Epilepsy Helpline: 01494 601400 (Monday–Friday 9 am–4 pm)