Epilepsy Action has written to the new government ministers urging for support for people with epilepsy in three key areas – health and social care, justice, and work and benefits.
Ahead of the general election, which took place on 4 July 2024, Epilepsy Action put together a manifesto of key issues affecting people with epilepsy.
The organisation is now calling on the new government to act on improving numbers of epilepsy specialist nurses and neurologists, putting together a sodium valproate compensation scheme and closing the disability employment and pay gap.
In a letter to Secretary of State for Health and Social Care, Wes Streeting, Epilepsy Action explained that epilepsy has not been a priority for government investment into research. The organisation also stressed that the ratio of neurologists to patients in the UK is one of the lowest in Europe, and that the number of ESNs is much lower than best practice guidelines suggest.
The organisation is asking the government to increase investment into epilepsy services, create more neurologist and ESN posts and put together a Neuro Taskforce.
Epilepsy Action also wrote to James Timpson, Minister of State for Prisons, Parole and Probation to campaign for justice for people with epilepsy.
The organisation is asking for a compensation scheme for families affected by the sodium valproate scandal. It is also asking for mandatory epilepsy training for police officers and prison staff. This is because the level of epilepsy in prisons is twice that of the general population.
Work and benefits
Epilepsy Action has also sent a letter to Liz Kendall, Secretary of State for Work and Pensions, highlighting changes needed around work and benefits for people with epilepsy.
At 42%, people with epilepsy have one of the lowest employment levels among disabled people, according to data from the Office for National Statistics. Those who are in employment are paid 12% less than non-disabled peers.
A 2024 survey by Epilepsy Action showed that 60% of responders with epilepsy faced discrimination at work, while 42% of employers said they would avoid hiring someone with epilepsy.
The organisation is asking the government for mandatory reporting of the disability employment pay gap and skilled job coaches to help people with hidden disabilities find work. Epilepsy Action also wants the government to ensure the Equality Act is fit for purpose and to introduce a minimum fine for any employer discriminating against disabled employees.
The letter also outlines challenges people with epilepsy face in applying for personal independence payments (PIP). Epilepsy Action says the PIP assessment system must take into account the needs of a fluctuating condition and the higher costs of living with a disability.
Take action
Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, said: “Before the general election, we set out clear priority areas that need to change to help us create a world without limits for people with epilepsy. Now we have our new government in place, it is time to take action to tackle those issues across healthcare, justice and employment and welfare to make real change.
“For too long, people with epilepsy have been overlooked in so many areas of life – from lack of prioritising neurology services to having to fight to find and stay in employment. Please help us to achieve long-lasting and impactful change by contacting your MP to stand up and fight for these issues so people affected by the condition can live the life they deserve.”
People can support the asks in the Epilepsy Action manifesto by writing to their MP.
