More than four in five people with epilepsy reported mental health challenges as a result of their condition, the latest My Neuro Survey from the Neurological Alliance has revealed.
The patient experience survey, published today (25 June), showed sustained mental health challenges for people with epilepsy, with 84% reporting this in 2025, and 83% in 2022.
The results also highlighted that people with neurological conditions are not getting the mental health support they need.
Of the respondents, more than two thirds (69%) of people who needed them said they couldn’t access neuropsychiatry services. Just under two thirds (62%) said they couldn’t access neuropsychology and just under half (48%) said they couldn’t access counselling.
Only one in three people with a neurological condition felt that services met their care needs.
The Neurological Alliance, of which Epilepsy Action is a member, advocates for people with neurological conditions to help ensure they have access treatment, care and support.
Cost of epilepsy
The My Neuro Survey also revealed that more than a quarter of people with epilepsy say they can’t afford the additional costs of their condition.
The survey results found that 28% of respondents with epilepsy said they couldn’t afford the extra costs of their condition. Additionally, 29% said their condition affects their ability to manage financially.
Half of people said they rely on benefits for financial support.
These findings come just days after the government published its welfare bill detailing plans to cut benefits, making Personal Independence Payments (PIP) more difficult to access.
Research from the Office for Budget Responsibility found that about a third of PIP claimants with epilepsy – nearly 11,000 – stand to lose out.
People with epilepsy already report difficulties in accessing this vital support, largely because assessors often fail to understand the fluctuating nature of their condition.
Epilepsy Action believes the reforms will be “damaging”, not least because people often rely on PIP to help them access and stay in work. Meanwhile, the survey also revealed that discrimination at work remained high, with 45% of people reporting this in 2025.
Murray Goulder, 45, who has epilepsy and stands to lose PIP due to the reforms, spoke to ITV News last week. He questioned the suggestion that the effects of cuts to PIP will be offset by spending on getting more disabled people into work.
He said: “I think they need to be going after the correct people, not everyone who’s disabled. And especially the rhetoric about ‘disabled people need to be working’ – I work a full-time job and I have done, and contributed, since I was 16.”
“A perfect storm”
Tom Shillito, health improvement and research manager at Epilepsy Action said: “Yet again these figures show that epilepsy remains a hidden condition in one more ways than one, with those affected falling through the cracks and being overlooked.
“Epilepsy is one of the most common neurological conditions, affecting 1 in 100 people, but its impact goes far beyond having seizures. We know people with epilepsy face more challenges with their mental health due to many factors, including medication side-effects and the unpredictability of seizures on all areas of their life. Combine this with the fact that people with epilepsy face a significant pay gap and discrimination in the workplace, and we have the perfect storm for a situation that urgently needs fixing.
“The government has spoken a lot recently about how the welfare system needs reforming to address the mental health epidemic in the UK and to get more people back into work. Taking away people’s support isn’t going to do that – we need a joined-up healthcare system that recognises and supports the needs of people with epilepsy. We also need a commitment to tackling discrimination in the workplace and ensure people with epilepsy receive the support they need to achieve their full potential.
“At Epilepsy Action, we are calling on the government to improve access to work and to create tailored workplace and employment support for people with epilepsy. We also want to see integrated mental health care to be part of every neurology pathway to ensure that people with epilepsy get the care and support that meets their specific needs.”
“We know what good looks like – now is the time to act”
Georgina Carr, CEO of the Neurological Alliance, said people with neurological conditions are being left behind.
She said: “One in six people lives with a neurological condition – yet care is too often fragmented, under-resourced, and poorly integrated.
“We need urgent action to tackle workforce shortages in neurology and associated specialties, deliver a dedicated implementation plan for neuro services, and ensure no one is turned away from mental health support because of their neurological diagnosis.
“We know what good looks like: joined-up services, empowered professionals, and meaningful partnerships with the voluntary sector.
“Now is the time to act – and the forthcoming NHS workforce plan and 10-year strategy must deliver for the one in six.”
The Neurological Alliance has created an open letter to the Health Secretary Wes Streeting, urging the government to take action in support of the one in six people with a neurological condition.
Sign the open letter now. Tell the Secretary of State for Health and Social Care to act now for everyone living with a neurological condition.
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