Epilepsy Action has written to the Prime Minister Rishi Sunak, the Chancellor of the Exchequer Jeremy Hunt, the Secretary of State for Health and Social Care Steve Barclay and the Secretary of State for Work and Pension Mel Stride, to highlight issues that our members have raised and to demand more support for people with epilepsy.
Previous governments have failed to provide sufficient help for vulnerable people, and it is imperative that Rishi Sunak and his ministers acknowledge the difficulties epilepsy can pose to individuals, and actively develop a plan to address these challenges.
The current cost-of-living crisis, as our survey reports, is cause of emotional, physical and economic struggles for families and individuals with epilepsy, who often rely on welfare support such as benefits to make ends meet. Even before the cost-of-living crisis had reach its peak, people with epilepsy were telling us that the stress of worrying about heating bills and rising food costs was increasing the frequency of their seizures. Despite this, the Prime Minister and the new Work and Pensions Secretary Mel Stride are still refusing to confirm whether benefits will rise with inflation, arguing that no decision would be announced prior to the 17th of November.
We believe that asking people to wait at least 2 weeks to have an answer on such an important matter is unjust and immoral, as it undermines the crisis we are currently facing and the condition that vulnerable people are forced to live in. Even when a decision is announced, it is unlikely that benefits will be uprated before April 2023, but many people simply cannot wait that long.
As a result, we have decided to take action by personally demanding the new government finally recognise the issues that people with epilepsy face and implement a plan which will provide them with the right support.
Some of the actions we are urging the government to take are:
- Benefits raised in line with inflation
- More employment support for people with epilepsy to help them get and stay in jobs
- Better access to the Warm Home Discount Scheme, which currently excludes around 210,000 on disability benefits from applying
- Reform of the PIP assessment which hardly recognises the implications of epilepsy and therefore prevents many people with this condition to successfully claim PIP
We also know that many people with epilepsy are struggling to access health services and treatment. A lack of resources in neurological care, and specifically in epilepsy services, has caused significant delays and is affecting the health of people with epilepsy.
In our letter to the Secretary of State for Health and Social Care, we are asking for:
- Better access to healthcare – this includes cutting the waiting time for treatment and care and ensuring people with epilepsy are being referred to a specialist.
- Improved mental health support services for people with epilepsy.
- Implementation of the recommendations from the “First Do No Harm” report to support families affected by sodium valproate. Moreover, we believe a redress or compensation scheme should also be in place.
- More support to get access to medicinal cannabis – we heard from many people who were unable to access cannabis-based medicines through the NHS. Research needs to be funded, as high-quality clinical evidence already shows that this treatment can reduce seizure frequency in people with specific epilepsies.
We believe it is time for vulnerable people to receive the required level of support from the government, and we will continue to call on those in power to ensure that people with epilepsy get the help and the support they need.
For more information on f what we are doing to help people with epilepsy, please visit our campaign page.