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Epilepsy Action responds to the second independent review of PIP

A second independent review of Personal Independent Payments (PIP) reaffirms Epilepsy Action’s belief that the assessment process for PIP is flawed and needs urgent review and reform. PIP was introduced to improve the benefits system for the “most vulnerable people in our society”. Instead, it is a system that lacks consistency, has eroded trust and confidence among disabled people and causes stress and anxiety for those trying to seek support.

Epilepsy Action welcomes the recommendations in Paul Gray’s review, but believes they do not go far enough to make the system fair and accurate for people with epilepsy. The review found that “the vast majority of responses…were negative. Common concerns were that the process…was very stressful, too long and that the Health Professionals conducting the assessment were not adequately trained to understand their condition.”

Our own research reflects the findings of the review. Epilepsy Action has long felt that the PIP assessment process is failing people with epilepsy, causing them to lose out on an award that they may be entitled to. This could have a significant impact on their daily lives.  Repeatedly, people with epilepsy are overlooked and excluded from this award. We believe the assessment process is ineffective and inadequate. It is unable to capture and reflect what it is to live with epilepsy.

Epilepsy Action is pleased the review highlights and recognises many of the issues that affect people with epilepsy, including how stressful the process of applying for PIP can be. This is particularly relevant to some people with epilepsy who can experience an increase in seizures due to stress. The review also recognises that for some people, providing further evidence could be difficult as they are not in regular contact with healthcare professionals. Epilepsy Action is aware this is a concern for people with epilepsy. We are concerned that the review found assessors were often disregarding further evidence provided by family members, friends and carers when assessing an individual.  Many people with epilepsy rely on this evidence to support their claim.

Epilepsy Action agrees with the review that there is “inherent mistrust” of PIP and that solving this will be a challenge.  The government’s recent decision to continue with changes, overruling Upper Tribunal rulings regarding PIP, does nothing to help solve this issue. Despite strong opposition and criticism from across Parliament, and disabled people and organisations that represent them, the government are ploughing ahead. They are imposing tighter rules on eligibility which, we believe, will penalise people with epilepsy causing them even more stress and anxiety. Epilepsy Action believes the government must stop these changes and uphold the ruling made by the Upper Tribunal.

We do not believe enough progress has been made in improving benefits assessment processes for people with fluctuating and/or hidden conditions, like epilepsy. Further review and reform of PIP is desperately needed to ensure people with epilepsy can be confident that the outcome is fair and accurate.

Event Date: 
Monday 3 April 2017 - 09:49

Comments: read the 6 comments or add yours


My husband has thankfully been awarded PIP following appeal which has been very stressful. How can we get involved with increasing awareness of this unfair administration of benefit & supporting people with applications

Submitted by Rose Brettell on

My partner has just been denied pip. She suffers from epilepsy following a brain aneurysm over 20 years ago. She was awarded dla indefinitely following a tribunal and has regular seizures ever since. She didn't even score 1 single point from the pip assessment and we feel that they have shown total disregard to any information we gave. The assessment was carried out by a paramedic. What would be the best course of action to have this decision overturned. i.e. should we get a letter to send in with the request to look at the request for pip again from her epilepsy nurse explaning how debilitated she would feel following a seizure . Since receiving the pip rejection my partner has suffered more fits which I believe is caused by the stress of the outcome. Any help would be appreciated.
Regards Rob

Submitted by Rob McGregor on

Hi Rob

Unfortunately the situation you and your partner are in is a very common one at the moment. And certainly it can create real difficulties for people.

We would always encourage people to ask for a mandatory reconsideration and to go to appeal if they have the energy. It is worth remembering that the assessors are measuring everyone by the 50% rule. This means that you have to be affected by your condition for half the time (half the week or month on average) Medical evidence is usually the best possible support you can get. But we would also suggest getting some help from a welfare rights organisation such as Citizens Advice. And hopefully you have already seen our information about PIP and epilepsy.

I do hope things improve for you both.



Epilepsy Action Helpline Team

Submitted by rich on

I went for a PIP asessment in January to be given 0 points for grand mal seizures abscence seizures and Jerk type seizures by an untrained person who stated that non were observed. Frustrated with this I called my ex wife in Latvia and had an EEG done where 8 seizures between 6 and 25 seconds was observed which equates to 24 per hour with this new evidence I still scored 0 points. What they dont understand is how long it takes to recover from each of these recently I lay in a wet bed for about 5 hours before I had the energy to get myself out.

Submitted by sean lynch on

I have recently been denied twice PIP, once last October and then on appeal, and then again this year when I applied again in May and I was turned down again I had a mandatory reconsideration, I have just this past few days been denied. This is crazy, and causes so much stress for so many people. The thing is, that they are spending their money turning people down when they would probably spend less if they gave us it in the first place!!

Submitted by Abigail Pine on

I'm about to put a reconsideration through after being denied it,I have had epilepsy since I was a teenager and now in my 40s.All I keep getting told from the DWP is that medical evidence is your only hope or it will just be overlooked,thats not as easy as they think-many mistakes end up being written in my letters after consultations with my consultant no matter how many times I explain things.Hopefully the CAB will be able to help when I speak to them.

Submitted by CHRISTINE on