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Epilepsy Action responds to Personal Independence Payment Assessment Guide update, 2 November 2017

Epilepsy Action is pleased that the government have announced changes today to the Personal Independence Payment (PIP) assessment guidance. These changes could significantly improve the process for people with epilepsy. From today, assessors will be given more help to understand how the condition affects people daily.

Epilepsy Action believes the assessment process is unable to capture and reflect what it is like to live with epilepsy. We know that 60% of 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 20% higher than for any other condition. Today’s announcement is a positive step forward in recognising that the system needs to improve for people with the condition.

This is a significant victory for our members who have been campaigning heavily on this issue to make sure the assessment process is fairer. Hundreds of people contacted their MPs urging them to take Epilepsy Action’s Epilepsy PIP Pledge. MPs who have taken the Pledge have promised to fight for a fairer assessment for people with the condition. Some MPs have written to the Minister on this issue.

The statement from Penny Mordaunt, the Minister for Disabled People, says that the changes will “increase entitlement for a number of both new and existing claimants, largely those with conditions such as epilepsy. The Department estimates approximately 10,000 new claims will benefit by £70 - £90 per week in 2022/2023” Today’s statement goes on to say that the Department will look back at all existing cases and identify anyone who may be entitled to more support.

Philip Lee, Chief Executive of Epilepsy Action said “We are delighted to see the government is starting to recognise the complex needs of people with epilepsy. Many people with the condition could have a seizure at any time, often without warning. The daily risk to people’s safety needs to be taken into account. We know the current system is not working and is failing people with epilepsy. They are more likely to be refused PIP than those with any other health condition.”

“Epilepsy Action is fighting for the PIP system to change. Today’s announcement represents an important step in making sure that people with epilepsy get the support they need to live a safer and more independent life.”

We are encouraged by the changes, but we remain concerned that they do not go far enough. Epilepsy Action is worried following the government’s decision to continue with other changes that could impact on people who need rescue medication to stop their seizures. We also know that more needs to be done to make sure assessors fully understand complex conditions such as epilepsy.

Epilepsy Action will be closely following how these changes will work in practice. We urge the government to continue to look at ways to improve the support available to people with hidden and/or fluctuating conditions. We recommend the government undertake a full review of the entire assessment to make sure that people with epilepsy get the support they need.

Take the PIP Pledge

Event Date: 
Thursday 2 November 2017 - 16:45

Comments: read the 2 comments or add yours


Although this is good news in general . It really does not look at how the decisions made by both the government and the courts have affected peoples life in the interim. It's hard enough living with a condition that can actually take you life away within minutes through no fault of your own. Then having to go through the process of mandatory reconsiderations then appeals through the courts, which i done myself and actually got told after providing adequate medical evidence and letters from GP's / Consultants / Hospital discharge letters after being picked up from both my house and from the street after taking seizures, that i was actually making out that my condition was worse than the court believed it was. Essentially calling me and all the people involved with my healthcare a liar. I hope they find comfort that i actually felt suicidal after the decisions made by their unfair and uncompassionate system. I was already medically ill in the first place and if i was living alone, i would have probably taken my own life. I have had to accept the fact a long time ago that i could actually die during a seizure, taking my own life would not have been any different. But at least i could have saved our loving state some money on my medication as i only seem to be a thorn in their side. I lost all my benefits at both my medical assessment and subsequent court appeal, but money cant make my condition better sadly. Feeling like you are both a liar and a burden to the state is what really hurt me the most. I suppose a letter of apology will never be seen for the way that i have been treated personally and i believe there will be many others that have been treated the same as myself and have felt at an all time low as i did.

Submitted by Alex on

My grandson was turned down for PIP, despite having previously received DLA payments. In addition to epilepsy he also has autism. The assessor was completely unqualified, not even a registered nurse, and he has appealed. However, when my daughter rang to see how his appeal was progressing, she was informed that there is a year's backlog.
The loss of his money has had a severe effect on the family's finances as my daughter has lost her carer's allowance as well.

Submitted by Christine Gibbons on