Campaigning for better services

Epilepsy Action are campaigning for better epilepsy health services for people with epilepsy.

There are 600,000 people living with epilepsy in the UK, but all too often they struggle to access the necessary health services.

care nurse visit to senior

We work with health organisations, politicians and other charities to ensure that people with epilepsy have access to the services they need.

Better services in Northern Ireland

Better services in Wales

What's the issue?

Many studies have highlighted the problems that people with epilepsy face in accessing health services.

  • NASH

    The National Audit of Seizure management in Hospitals (NASH) examines the facilities and care available to patients who attend emergency departments due to a seizure. About 100 000 people present to hospitals each year in England with an epileptic seizure.

    Key findings of the latest NASH audit included:

    • Half of people with known epilepsy attending the emergency department had not seen an epilepsy specialist in the previous year
    • Two thirds may be taking inadequate epilepsy medication, indicating missed opportunities to improve treatment
    • Over a third of patients with a suspected first seizure were not being referred onwards to any neurological or specialist clinic.
    • Only 4 in 10 of those with established epilepsy were referred onwards.
    • Fewer than a third of people who presented in A&E with possible seizures were given advice and information about future seizures
    • People aged over 60 had worse rates of onward referral compared to younger people
  • Epilepsy12

    Epilepsy12 is an audit of the services of health care for children and young people with suspected epileptic seizures.

    The findings from the latest Epilepsy12 report revealed issues among children’s epilepsy services in England and Wales with referrals, information provision and school care plans:

    • Three-quarters (77%) of children who should have been considered for epilepsy surgery had not been referred
    • In one-fifth of care plans, there was no evidence that water safety had been discussed, and a similar proportion showed no evidence of information on general participation and risk being discussed. Only a third (32%) of children had a school Individual Healthcare Plan
    • Less than half (43%) of children and young people with epilepsy, and their families or carers, had received information around Sudden Unexpected Death in Epilepsy (SUDEP) in the first year since diagnosis
    • Mental health support services for children with epilepsy were also found to be lacking, with only 15% of Health Boards and Trusts being able to include these within epilepsy clinics.
  • My Neuro Survey

    In 2021/2022, The Neurological Alliance ran a survey – My Neuro Survey – to give a picture of the experience of care, treatment and support for people affected by neurological conditions.

    Nationally, over 8,500 people with a neurological condition shared their experiences and reported:

    • Delays to treatment and care can change your life forever.
      55% of adults and 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year​.
    • Most people with a neurological condition are unable to access the mental wellbeing support they need.
      40% reported their mental wellbeing needs are not being met at all.
    • Finding out you have a neurological condition is scary and confusing.
      Receiving the right information and support can make a real difference. 2 in 10 were not given an explanation of their diagnosis. Almost 4 in 10 adults reported not being given any information at all.

    Over 1000 people who completed the survey had epilepsy and shared their experiences of epilepsy care and highlighted concerns about the provision of mental health care and long waiting times:

    • 71% of respondents say their condition affects their quality of life to a moderate or great extent, and 61% would like a referral to counselling services but have not been offered it; 35% don’t feel their mental health needs are being met at all
    • 59% of respondents were not asked about their mental wellbeing in the last 3 years
    • 36% of respondents stated that they had waited more than 12 months to get their diagnosis after first experiencing a seizure
    • 20% of respondents said they waited more than 12 months to see a neurologist

The NICE epilepsy guideline outlines the care and services that people with epilepsy should receive through the NHS.

These guidelines cover the standard of services that people with epilepsy should expect to receive. For example:

  • Children, young people and adults should be referred urgently (within two weeks) for an assessment after a first suspected seizure
  • People with a learning disability or other health conditions, such as complex mental health problems, those taking medicines with long-term side effects, such as bone health problems, and women of childbearing potential taking medicines which carry a risk in pregnancy, should be reviewed annually
  • An MRI scan for children, young people and adults diagnosed with epilepsy should be carried out within 6 weeks of the MRI referral

However, we know that in many places these standards are not being met.

What we are 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 regularly raise these issues with the Department for Health and individual health boards. Where possible we also highlight best practice and advocate for these systems to be adopted elsewhere.

We regularly respond to consultations to highlight where epilepsy services are failing and how they could be improved.

We will continue to work to improve services and ensure that people with epilepsy have access to the support they need.

What next?

While we need urgent action to address some of the most pressing challenges facing people with epilepsy, we also need a long-term solution to deliver high quality epilepsy health services to people into the future.

How you can be 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:

Email us at to find out how you can help.