Alliance Member Epilepsy Action campaigning for change


Alliance member Epilepsy Action shows how they are supporting the Alliance’s goals and placing the experiences of people with living with a neurological condition front and centre as they campaign for change. Daniel Jennings, Senior Policy and Campaigns Officer and Claudia Christie, Media Officer at Epilepsy Action, write:

Since Personal Independence Payments (PIP) were introduced in 2013, Epilepsy Action has continued to hear how the system isn’t working for people with epilepsy. The assessment process is failing to recognise the impact of invisible and fluctuating conditions. And ultimately, people with epilepsy. We carried out a survey this year to expose the challenges and problems we know people face and to campaign for change.

Around 700 people took part in our #MakeWelfareFair survey, and the results confirmed what we know – that many assessors don’t understand the condition and the impact on people’s lives. Worryingly, we heard about “informal observations” before and during assessments. People were told they could not be depressed because they made eye contact during the assessment or need help because they spoke well or could hold a cup of coffee. One person was even told that having painted nails made their disability less believable.

An overwhelming number of people talked about the stress of the PIP process and how it had worsened their epilepsy, increasing the frequency and severity of their seizures. Several vowed never to endure assessments again because of this. Some people were going through lengthy appeals and accessing food banks as they waited for financial support.

Concerns were also raised about the amount of money people receive on PIP. While those receiving Universal Credit got an extra £20 per week during the pandemic, people on PIP didn’t. This shortfall is becoming more urgent as food costs and energy bills continue to rise.

We want people with epilepsy to be at the heart of influencing change. Throughout November, people all over the UK wrote to their MP and shared their real-life experiences on the radio of the welfare system. All were extremely brave, giving powerful insights into the often confusing and humiliating assessment process and the financial hardships they continue to face. One woman who took part said: “I have never felt this heard or appreciated when it comes to speaking about my condition and it has been such a cathartic experience.”

Thanks to people speaking out, we can continue to lobby for wholesale changes to the welfare system. These include the need to ensure that people with epilepsy are assessed by someone with understanding of the condition, increasing the amount of money people on PIP receive and increasing the length of PIP awards to avoid frequent re-assessments.

We applaud Epilepsy Action for working to achieve our collective vision of a world where everyone with a neurological condition has access to the same high quality care, treatment and support, and proactively lobbying for change for people with epilepsy.

Join us in celebrating achievements in the neurological community with the hashtag #NeuroCelebration on Facebook, Twitter and Instagram.