We work with health organisations, politicians and other charities to ensure that people with epilepsy have access to the services they need.
What's the issue?
About 630,000 people in the UK live with epilepsy. Sadly, many find it hard to get the health services they need.
The NICE epilepsy guidelines and quality standard explain the care and services people with epilepsy should get from the NHS.
These guidelines cover the standard of services that people with epilepsy should expect to receive. For example:
- Children and adults should be referred urgently (within two weeks) for an assessment after a first suspected seizure
- People with epilepsy have access to an epilepsy specialist nurse
- People with epilepsy have an up-to-date and agreed comprehensive epilepsy care plan
- People with epilepsy are asked about their memory, mental health, and social and emotional wellbeing at epilepsy appointments
However, we know that in many places these standards are not being met.
What we’re doing
We are working with MPs, healthcare professionals and other charities to highlight the issues and problems with the current provision of epilepsy services.
We will continue to work to improve services and ensure that people with epilepsy have access to the support they need.
A Dangerous Wait
We supported the A Dangerous Wait report to highlight the unacceptable reality facing people with epilepsy and to strengthen the case for urgent change. The evidence shows that too many people are waiting far too long for diagnosis and specialist care, with delays increasing significantly in recent years and leaving people without the support they need. Too often, this means people are pushed into crisis—around 85,000 epilepsy-related A&E attendances each year and rising hospital stays point to a system that is failing to provide timely, preventative care. These delays are dangerous, increasing the risk of seizures, impacting mental health and limiting people’s independence and quality of life, while stark regional inequalities and shortages in specialist staff mean access to care depends too much on where you live.
That’s why this report is such an important tool for our campaigning. It backs up what we hear every day from people affected by epilepsy and sets out clear, practical solutions—ending delays, investing in specialist roles and tackling inequalities—that align with our calls for change. We’re using this evidence to push governments and the NHS to prioritise epilepsy services, because with the right action we can reduce avoidable harm, ease pressure on emergency services and make sure everyone with epilepsy gets the care they need, when they need it.
How you can get involved
You can tell us about your experiences. If you have experienced problems or delays with your epilepsy treatment, we would like to hear from you.
We are always looking for more MPs to support our work, so please do contact your MP to ask them to support improvements to epilepsy services. You can find out who your MP is here: https://members.parliament.uk/FindYourMP
Email us at campaigns@epilepsy.org.uk to find out how you can help.
Join our Action Team!
Looking for a fun and flexible way to help raise awareness?
Our Action Team is a core group of volunteers dedicated to raising epilepsy awareness online and in the local community.
If you want to get involved but don’t have much time to give, this is the perfect role for you.