A new UK report into epilepsy care in the NHS has been called “a wake-up call” by Epilepsy Action, after revealing growing delays in access to specialist care, rising emergency admissions and marked regional inequalities across the NHS.
The report, ‘A dangerous wait: addressing the NHS epilepsy crisis’, put together by a working group comprising healthcare professionals and UK patient epilepsy groups and endorsed by the International League Against Epilepsy (ILAE) British Branch, is calling for urgent action from the government and NHS leaders.
It called the current situation “alarming”, stressing that delays and gaps in specialist support and epilepsy care will have significant consequences for the 630,000 people living with epilepsy in the UK.
The report said: “If we are to save lives and support those with epilepsy to live their life to the full, epilepsy services need to be prioritised.”
Neurology “overlooked and under-supported”
The gaps in epilepsy care contribute to avoidable uncontrolled seizures, poor mental health, reduced quality of life and an increased risk of sudden unexpected death in epilepsy (SUDEP), which affects one in 1,000 people with epilepsy.
The “dangerous wait” report notes that neurology services are under sustained and increasing pressure. It also highlights that NHS England not including neurology in its ‘10 Year Health Plan’ indicates that neurology is “overlooked and under-supported” in the NHS.
Neurology referral delays have increased dramatically across England (up by 357%), Scotland (up by 236%) and Wales (from 30 to 4,000 referrals). This has contributed to a doubling of excess bed days (extra hospital stays that could have been avoided) for people with epilepsy since 2020 (9,000 to 18,000).
Consequences of delayed epilepsy care
Alison Fuller, director of health improvement and influencing at Epilepsy Action, stressed that behind the numbers facing this dangerous wait for care are real people dealing with a complicated and multi-faceted condition.
She said: “These findings should be a wake-up call. Behind every delayed referral, missed appointment and long wait is a person living with uncertainty. Someone waiting for answers. Someone continuing to have seizures while they wait for specialist care. Someone whose mental health, independence and quality of life may be getting worse.
“People with epilepsy have been telling us for years that they are struggling to access the specialist care and support they desperately need. This report makes clear that the consequences of delayed care are real, and in some cases can be life-threatening, leaving families left behind completely devastated.
“Now is the time for government and NHS leaders across the UK to act. No-one should face a greater risk of harm simply because of where they live.”
A time for action
In the report, the working group has set out a series of recommendations for the government, devolved administrations and NHS leaders to reduce the dangerous wait for specialist care and increasing emergency admissions:
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Future-proof neurology and workforce provision
Prioritise and futureproof neurology services and workforce, especially in deprived areas, by setting workforce guidance, funding training and protocol development, strengthening primary and community care and accelerating adoption of proven innovations and targeted initiatives.
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Protect, expand and fund ESN training and posts
Protect and expand ESN and Epilepsy Specialist Pharmacists (ESPs) posts, especially in deprived areas, by filling vacancies, creating new roles, and promoting career pathways with early career education and structured placements to meet demand and improve patient support.
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Identify, agree and prioritise key epilepsy sub-groups
Identify, agree and prioritise key epilepsy sub-groups using local data and insights to develop tailored models of care at a regional health system level that reflect their varying clinical, social and psychological needs.
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Embed mental health support within epilepsy care
Embed mental health provision into epilepsy multidisciplinary teams (MDTs) so that children, young people and adults with epilepsy receive timely, integrated support; also provide training to mental health practitioners to understand epilepsy-specific challenges.
The report concludes: “There is no room for apathy, despondency or procrastination: this is a time for action.
“We are urging NHS leaders, devolved administrations and the government to end the wait and address the NHS epilepsy crisis. We ask them to listen, to review our report findings and take urgent action.”
Fräs Anna Andersson, general manager at Angelini Pharma, the company that initiated, organised and funded the non-promotional report with patient organisations, healthcare organisations and consultant neurologists, said: “At Angelini Pharma, we believe it is important to support greater understanding of the challenges people living with epilepsy continue to face across the NHS.
“This report brings together important evidence and stakeholder perspectives that can help inform a broader dialogue on inequalities, access to care and the need for meaningful action.”
You can read the full report on the Epilepsy Action website.
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