Welfare and benefits

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.

The government is now carrying out a review of current claims to see if those people might be entitled to more money. This is because of two Upper Tribunal rulings where the court ruled the government were interpreting the law incorrectly. There are other cases going through court at the moment. The impact of these rulings on people with epilepsy shows that when assessing the impact of epilepsy on someone’s life, the PIP assessment process is not fit for purpose. For more information on these reviews you can see our advice and information pages. You can also download this FAQ produced by the DWP. 

We want the government to urgently review and assess the whole PIP process.

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, 40 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.

Some of the MPs who have taken our PIP Pledge are working together to get a debate in parliament on the issue. This will mean the Minister for Disability will have to listen to the problems and then respond.

The APPG on epilepsy recently had a session on PIP and epilepsy. People with epilepsy were able to share their experiences in parliament and discuss what should change.

We also work with assessment providers to help them improve their training and guidance.

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.

Universal credit

The Government is introducing Universal Credit, which will replace the following benefits:

  • Child Tax Credit
  • Housing Benefit
  • Income Support
  • income-based Jobseeker’s Allowance (JSA)
  • income-related Employment and Support Allowance (ESA)
  • Working Tax Credit

If you already receive one of the above, the Government will eventually move you onto Universal Credit. The Government have said that they will start transferring people onto Universal Credit from July 2019. At first, a small number of people, around 10,000, will be moved in 2019. They hope to move everyone onto Universal Credit by December 2023.

Universal Credit will not be replacing Personal Independence Payments (PIP), and you will be able to continue to receive this benefit, or make a new claim for PIP.

Universal Credit has now been introduced across the UK, so if you make a new claim, or have to make a new claim due to a change of circumstance, you will have to apply for Universal Credit.

You can find out more about Universal Credit, and whether you would be eligible here.

Citizen’s Advice can also offer help and support with your Universal Credit claim.

At Epilepsy Action we would be interested to hear from you if you have been negatively affected by Universal Credit. If you would like to let us know your experiences, please do get in touch on 0113 210 8866 or email campaigns@epilepsy.org.uk.

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