We exist to improve the lives
of everyone affected by epilepsy

Personal Independence Payment (PIP) assessment

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. To be awarded PIP you must live in England, Scotland or Wales. You must also go through an assessment process. This can include filling out a form, submitting further evidence and having a face to face assessment. If you are not awarded PIP you can ask for the decision to be reconsidered (mandatory reconsideration). If you are still unhappy with the outcome, you can appeal the decision.

The assessment process is already not effective at capturing and reflecting the nature of epilepsy. Each descriptor carries a number of points. The descriptor helps the assessor decide what someone is capable of while carrying out daily activities. Epilepsy Action believes that they do not assess the impact epilepsy has on an individual’s daily life. This means that people are not awarded the correct level of PIP, or may not be awarded PIP at all.

Epilepsy Action wants the government to urgently review and assess the whole PIP assessment process.

Ask your MP to take the PIP Pledge

What we are doing

The Disability Benefits Consortium (DBC) has launched a report, 'Supporting Those Who Need it Most?'. As a member of the DBC we support the recommendations in this report. 

We are working with MPs to help them highlight the issue in Parliament. We also help them to support their constituents who have concerns about PIP.

We speak to the media, sharing stories and concerns to make sure the issue doesn’t go away and that people continue to talk about it.

We speak to people with epilepsy and epilepsy specialist nurses about their experiences. We will continue to use these to illustrate why we want to see changes to the assessment process and the impact PIP has on individual lives. We submitted a response to the 2nd Gray Review of the PIP assessment which includes our recommendations to improve the process for people with epilepsy. The findings of the review have now been published. 

Read our response to Personal Independence Payment Assessment Guide update

How you can be involved

You can share the DBC report with your MP and ask them to take it to the Minister.

Share your experiences and tell them how Personal Independence Payments, or the lack of, affects your daily life. 

Get involved on social media using the hashtag #PIP or #GetAGripOnPIP to keep attention on the issue.

We want to hear your experience of PIP and the assessment process. What difference does it make to your life if you’ve been awarded PIP? What is the impact if you haven’t?  By collecting people’s experiences and providing real examples we can highlight areas that need improvement.  We can show why the assessment process needs to be reviewed and why the governments planned changes shouldn’t go ahead. Contact us at campaigns@epilepsy.org.uk

More information

We have help and guidance on PIP and other benefits on our website or call the Epilepsy Action Helpline on Freephone 0808 800 5050.

Event Date: 
Wednesday 14 September 2016 - 09:32

Comments: read the 14 comments or add yours


Went to court and I won the appeal for my daughter. The forms do not cover day to day life of an epileptic.

Submitted by Elaine Crump on

I have appealed my case of pip, which has been rejected 3 times so I am willing to take them to court and fight my case so any advice would be greatly appreciated.

Submitted by rosearee reid on

Hi Rosearee

Thank you for your question. We completely understand your frustration. Our advice and information line receives many calls about Personal Independence Payment and the assessment process. We know that it can cause a lot of stress and worry.

Applying for benefits or asking for a reconsideration/appeal can be a challenge, as the rules can be quite complicated. If you haven’t already, it would be beneficial to get support with this from a specialist welfare benefits advisor, as their knowledge and experience can be invaluable. Organisations such as Citizens Advice or a local welfare rights unit can provide support with reconsiderations and appeals.

If you haven’t already, you may wish to view our information on PIP and epilepsy. Please feel free to print this off and take to any meetings you have with a welfare benefits advisor. (I can send you a printed copy if you can’t print it yourself).

If you are still unsure whether you could be entitled to this benefit you could use the charity Turn2us  benefit check service. They will ask you some questions and work out if you would be eligible for this and other benefits. 



Epilepsy Action Helpline Team

Submitted by rich on

My son Mark who was 36yrs applied for PIP, when he developed epilepsy a year ago. He was quite poorly and sometimes had multiple tonic-clonic seizures in a day. He went down to three days at work, but practically and financially, he found living and working day to day very difficult. He would have a seizure at work and each time he would injure himself. He had no warnings beforehand to find a safe environment or position. The poor boy was very ill. However, his application for PIP was refused. He had many changes in medication and was unable to have surgery, because he was unsuitable. His seizures did lesson and recently he was down to one a fortnight, but they were very severe. He was a very courageous young and I say WAS, because tragically he died during a seizure just over a month ago. I am angry and frustrated. I feel that him continually working and unable to claim any benefits was a contributory factor in his untimely death. He worked hard from the age of sixteen and not once in his short life did he take from the system and yet he received no help when he needed it. He has left a heartbroken family and an 8yr old son. Tragic !!!

Submitted by Kay Westwood on

I have epilepsy since i was 2 was told i out grew it when i was 12 was taken off meds then when i was 42 i started having seizures again last January 30 i had 7 in a row got my med reajusted was told i can't go on social security because i didn't work within certain years or long enough and my husband makes to much so what can i do i can't work

Submitted by Lynn Grismala on

I had a pip assessment they asked me if i was capable of walking i can't remember how many yards it was and can i pick up a pen? She also asked if I can travel by myself I said only to places I know because I don't remember directions and get lost she also asked if I could count and made it as easy as possible then if I can cook I can't and use the microwave but got no points for not being able to cook like I did on my dla as I was capable of getting my own meal and getting my own medication and don't need any help using the bathroom I had no points for nothing she also made a lot of things up and came up with a lot of assumptions I haven't bothered trying to appeal because I don't like feeling as though I have done something wrong. There making me feel like it's my fault theres to much hassle invovled it makes me confussed i dont want to cause myself to much stress as it's one of my triggers so I just try to get on with what is put in front of me and not worry myself

Submitted by Rachel on

I think its sad about the comments i have read it actually had me in tears about the man who died its sad. I think its not right that people i know are on p.i.p and have nothing wrong with them they are lieing about mental health well i have mental health issues and also have tonic clinic seizures ive split my eye open 3 times and my back of my head i have scars all over my head i also had my shoulder dislocated amd nearlly broke my back also i even haf a seizure and when i came out of it i attacked my sister badly now this is affecting me badly im scared coz i cannot remeber anything after my seizures and i am i fear for my family as i dont want ti have a seizure and attack them !! I have been refused p.i.p and i also think something needs to be done to help us as i dont even go out anymore as im scared if i fall into the road and die !! Thanks for reading my comment and i hope the women whos som died is ok i feel sorry for her xx keep ur head up xxx

Submitted by Daniel Whittle on

I went to tribunal with my 18 year old son this morning, was told they will write to us with their decision, but im not holding my breath for a positive outcome. The questions they asked were can you walk to the shop on your own and how far away is it. There was a representitive from dwp present who piped up that my son was so well that he had been discharged from neurology, she didnt look so smug when i pointed out that if she had read the consultants letter properly it said he had been discharged from paeds and transitioned over to the adult neurologist. Dwp argued that he can manage his own condition....really 17 seizures in 24 hours, hospitalised and on one to one care, rescue meds and a feeding tube inserted to get his meds down. Really hope something is done soon to make the system fairer for those with epilepsy.

Submitted by TracyC on

Hi Tracy

That sounds like an awful experience. I’m afraid many people with epilepsy have been having trouble with the PIP assessments.

But the new guidance is definitely good news for people with epilepsy, even though we aren’t sure exactly how it will be carried out yet.



Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

I had to go to court to fight my case in 2015 and won my case but only for 2 years. I have uncontrolled epilepsy and also staring fits which has got worse as I got older i’m now 41. In March of this year I claimed again and yet again it was denied so i’m here again it’s now November I had no pip money since March which has put pressure on me. And my family which has made my epilepsy worse. They tried to say I didn’t have it even when I had letters from doctors and my doctor from my hospital. I am still waiting to go to court and hoping that it won’t be much longer. Pip is not that there to help people with epilepsy. I feel let down I feel i’m been made to be i’m making my illness up. It’s not just my epilepsy it’s my confidence about going out it’s not being left on my own it’s not being to drive not being able to drive. It’s stopped us going out as a family as we can’t afford to. My husband getting a car as I can’t go just go for a walk as I have no warning so i’m at home . It’s so unfair as I feel because it’s in my brain they can’t see it, the meeting I attend this lady has never met me before but is able to stop my pip it’s shocking

Submitted by Tanya white on

Hi Tanya

Many people with epilepsy have been having a very difficult time trying to claim PIP.

We are pleased with the new guidance and are very much hoping it will make a considerable difference.

Now we are just waiting to see how it gets carried out.



Epilepsy Action Helpline Team


Submitted by Cherry-Epilepsy... on

Just an update on my previous comment about going to tribunal with my son and awaiting the decision ny post.....The tribunal panel went in our favour and awarded enhanced rate backdated to february 2017, we are so happy that they listened to what we said and took into account the impact that epilepsy has on mt son and us as a family. Good luck to all of you and keep fighting!

Submitted by TracyC on

Hi I have been refused pip even though I have had epilepsy since 17,43 now.It's uncontrolled with focal and tonic clonic.I am about to send my reconsideration letter in with any extra evidence I can get,my best help has been my specialist nurse,hopefully I will get something from my neurologist at the end of the month as well.This has made my seizures worse due to a highly stressful time and they have become more frequent,trying hard but I'm not convinced I will win due to all the changes and not understanding of how difficult it is to live with epilepsy and mental health issues too.Part of me says give up due to my health but the other half keeps saying don't give up-very difficult!

Submitted by CHRISTINE on

Christine, Please don't give up, i know its a stressful time but you really should go forward with your reconsideration, be prepared that they will probably turn you down again, but take it to tribunal and try not to worry. The tribunal panel in our case were not intimidating at all and were very gentle and understanding when asking us questions. Is there a someone that can help you with your appeal? In my sons case we told them that he could do activities of daily living but needed supervision to for safety and to ensure he got help if he had a seizure. I wish you all the best in your appeal.

Submitted by TracyC on