What's the issue?
Personal Independence Payment (PIP) is a benefit which helps with some of the extra costs caused by long-term ill health or disability.
The PIP assessment process is failing people with epilepsy. Many people are missing out on income that they may be entitled to. This income would have a positive impact on people’s daily lives. Epilepsy Action believes 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.
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 PIP Pledge. So far, 28 MPs have signed the PIP pledge to fight for fairer PIP assessments for people with epilepsy.
We work with MPs and other organisations to make sure epilepsy has a voice in parliament. We do this by asking MPs to speak in debates, to ask questions and write to the minister. We also work with assessment providers to help them improve their training and guidance.
On 2 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. We strongly suggest that the government does more to improve the guidance.
The government also announced they were going to review existing claims following this change. This review only includes people whose claim fits in a certain time period. We believe this is wrong. We are urging the government to include everyone in their review.
On 14 February 2018, the House of Commons Work and Pensions Committee published their report on PIP and ESA assessments after months of consultation. Epilepsy Action chief executive Philip Lee responded to the report saying:
“Epilepsy Action welcomes the Work and Pensions Committees report on PIP and ESA Assessments. People with epilepsy are 20% more likely than those with any other condition to be refused PIP during the switch from DLA. We’re encouraged that the Committee has recognised that for a sizeable number of claimants – including many people with epilepsy – the assessment process has gone very wrong.
This report echoes the concerns raised by Epilepsy Action that the current process is unable to accurately assess the impact epilepsy has on an individual’s daily life. We call on the government to urgently act on the report’s recommendations to ensure the assessment process works for people with epilepsy who are being failed by the current system.
While people with epilepsy often have to fight for support to which they are legally entitled, the Department for Work and Pensions has spent over one hundred million pounds in the last two years defending often incorrect decisions. Fixing the assessment process would not only ensure people with epilepsy get the support they need first time round but also help to rebuild trust in the system and save public money.
This report is an important reminder of the problems with the current DWP assessment process but these concerns are not new. Last November the government acknowledged failures in the PIP assessment process that specifically impacted people with epilepsy and announced a review exercise to identify those affected. Epilepsy Action have been working hard to ensure those affected receive the additional support they are entitled to. However, despite multiple attempts to engage with the Minister for Disabled People, Sarah Newton, we have heard nothing back.
Epilepsy Action would once again welcome the opportunity to work with the Department for Work and Pensions to implement the Committee’s recommendations and ensure the assessment process recognises the complex challenges people with epilepsy often face."
Epilepsy Action needs your help again to make sure as many MPs as possible attend the debate and speak up for people with epilepsy who are missing out on much needed support.
We have help and guidance on PIP and other benefits on our website or call the Epilepsy Action Helpline on Freephone 0808 800 5050.
Statement from our chief executive Philip Lee
“People with epilepsy are already facing one review over PIP and now they are facing another review, with no certainty, clarity or timeframe on how it will be carried out. It’s completely unacceptable that their money, safety and lives are being put at risk in this way. The fact that there has been not one but two significant reviews of the system in recent months only highlights the systematic failure of the whole process.
“Epilepsy still has the highest refusal rate for people claiming PIP – 23% above the national average for other health conditions. This means people with epilepsy are more likely to be denied the financial support they need to help with the extra costs of living with a hidden and unpredictable disability.
“Many people with epilepsy need PIP to help them carry out daily tasks safely, from getting to work to bathing and cooking at home. Epilepsy Action is campaigning for a full review of PIP after hearing from people with epilepsy who are being failed by the current system. We want to know what the timeframe for this review is. People are waiting to find out if their award has been changed. However, they will only be notified if there is a change, so how will they know when to stop waiting?”