What the issue is
Personal Independence Payment (PIP) helps pay for extra costs. It supports people with a disability or long-term health condition.
However, many people with epilepsy are not getting the help and support they need through PIP.
The current PIP assessment process is not working for people with epilepsy.
The process does not properly assess the impact epilepsy has on an individual’s daily life. The assessment cannot capture and reflect the nature of epilepsy. Many people with epilepsy struggle during their first assessment for PIP. They often have to appeal to get the support they deserve.
What needs to change
We want the Government to change how PIP assessments are done. This will help better consider the issues faced by people with epilepsy.
Epilepsy Action asked people with epilepsy about their experiences applying for Personal Independence Payments (PIP). They wanted to learn how the benefit system affects them.
What we’re doing
People with epilepsy had the lowest success in claiming PIP compared to those with other health conditions.
Epilepsy Action teamed up with the Department of Work and Pensions and assessment providers. This collaboration improved the process, raising success rates to 71% in 2020.
However, our survey results show that there are still many improvements that need to be made.
To help people with epilepsy receive the support they need through PIP, Epilepsy Action urges the Government to change the current process.
- We know that frequent re-assessments are a common concern for many people with epilepsy. The length of PIP awards should be increased to avoid these frequent re-assessments. The DWP should use information from past assessments. This would help assessors make decisions on paper, so they won’t need to repeat assessments.
- Revise the activities and descriptions in the PIP assessment and Universal Credit Work Capability Assessment. This will help accurately reflect the effects of living with a fluctuating and invisible condition, such as epilepsy.
- Allow people the choice of whether their assessment takes place face-to-face or by telephone or video.
- Enhance feedback from successful appeals to assessment providers. This will help ensure the right decision is made during the initial assessment. It will also prevent people from needing to go through mandatory reconsideration and appeals.
- People often feel that assessors are not listening and do not record their answers correctly. More needs to be done to address the sometimes confrontational nature of the assessment process and instil trust in the process.
- End of using informal observations (notes from health professionals about how a person moves, communicates, or sits) in the assessment process.
How you can get involved
We are looking for MPs to support our work to ensure that these recommendations are implemented.
We would like people to raise this issue with their MP.
You can download the attached letter and edit it to explain your own experiences with PIP and send it to your MP.
Got any questions?
Our expert advisors can help you with any questions you might have about living with epilepsy.