Personal Independence Payment (PIP) is failing people with epilepsy. Get involved in the PIP Summer of Action and demand change.
What's the issue?
PIP is a benefit which helps with some of the extra costs of living with a disability or long-term health condition.
Epilepsy Action believes that the PIP assessment process is failing people with epilepsy. Many people are missing out on money they may be entitled to. This money would have a positive impact on people’s lives.
Three out of five people with epilepsy who were previously in receipt of Disability Living Allowance (DLA) had their award decreased or disallowed following a reassessment for PIP. This is more than for any other condition.
We believe that the process does not assess the impact epilepsy has on an individual’s daily life. The assessment is not able to capture and reflect the nature of epilepsy.
We want the government to urgently review and assess the whole PIP process.
In November 2017 the government announced they were making changes to PIP guidance. This was after a judge ruled that a person’s need for supervision to remain safe was not being correctly assessed.
The government issued new guidance. Epilepsy Action believes the new guidance is still not good enough. The government also announced they will review existing claims following this change. They will be looking to see if anyone is entitled to more money under the new guidance.
Epilepsy Action believes the Department for Work and Pensions have made some mistakes when making these changes. We believe they should have worked with people with epilepsy when developing the new guidance. They should have taken more time to make sure they got it right. We don’t think they have provided enough information to people who might be impacted by the changes and the review.
What we are doing
We have been campaigning to improve PIP for people with epilepsy. Hundreds of you have contacted your MP and asked them to take the Epilepsy Action PIP Pledge. So far, 36 MPs have committed to fighting for a fairer PIP process for people with epilepsy.
We work with these MPs to make sure epilepsy has a voice in parliament. With support from us, they speak in debates, ask parliamentary questions, and write to ministers about the issues facing people with epilepsy.
We also work with assessment providers to help them improve their training and guidance.
In April Epilepsy Action met with senior staff from the DWP. We told them our concerns about the changes they had made to the guidance and the review they are carrying out. They were open to our recommendations and said they will consider them. They agreed that they should have done some things differently. They have said they will provide more information for people about the review and how it will happen. We will update this page and our advice and information pages as soon as we get any new information.
How you can get involved
Your support has helped us get this far. We are asking you to continue to lobby your MP. We need to keep telling them about the problems with PIP for people with epilepsy. We want you to tell them, they must do something to make things better.
Epilepsy Action are taking part in the Disability Benefits Consortium’s (DBC) ‘PIP Summer of Action’. We need you to get involved. With over 80 charities taking part the voice of disabled people and people with long-term health conditions will be louder than ever. We want to make sure that the voices of people with epilepsy are amongst those being heard.
Throughout the summer we want to support you to meet your local MPs and talk to them about PIP. It doesn’t matter if you’ve never met your MP before, or perhaps you see them every week! If you want MPs to be aware of the problems with PIP and you think they should be taking action, this is for you.
We have lots of information to help you get involved. You can download our step-by-step guide to campaigning. This will help you arrange a meeting with your MP, or if you are part of a group you could invite them along. The guide will give you ideas on what to say when you meet your MP. It will tell you what you can expect to happen during your meeting. The guide is available here. While you’re there you can ask them to take the Epilepsy Action PIP Pledge.
We want you to share where MP meetings are happening across the country, so make sure you tell us. Don’t worry, we won’t share any personal information about you.
If you can’t meet your MP locally, you can still support the PIP Summer of Action. You can share what other people are doing on social media using the hashtag #GetAGripOnPIP. You can also email your MP and ask them to take the Epilepsy Action PIP Pledge.