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of everyone affected by epilepsy

 

Personal Independence Payment (PIP) assessment

Personal Independence Payment (PIP) is failing people with epilepsy. Get involved in the PIP Summer of Action and demand change.

What's the issue?

PIP is a benefit which helps with some of the extra costs of living with a disability or long-term health condition.

Epilepsy Action believes that the PIP assessment process is failing people with epilepsy. Many people are missing out on money they may be entitled to. This money would have a positive impact on people’s lives.

Three out of five 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 more than for any other condition.

We believe 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.

Recent changes

In 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. The government also announced they will review existing claims following this change. They will be looking to see if anyone is entitled to more money under the new guidance.

Epilepsy Action believes the Department for Work and Pensions have made some mistakes when making these changes. We believe they should have worked with people with epilepsy when developing the new guidance. They should have taken more time to make sure they got it right. We don’t think they have provided enough information to people who might be impacted by the changes and the review.

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 Action PIP Pledge. So far, 36 MPs have committed to fighting for a fairer PIP process for people with epilepsy.

We work with these MPs to make sure epilepsy has a voice in parliament. With support from us, they speak in debates, ask parliamentary questions, and write to ministers about the issues facing people with epilepsy.

We also work with assessment providers to help them improve their training and guidance.

In April Epilepsy Action met with senior staff from the DWP. We told them our concerns about the changes they had made to the guidance and the review they are carrying out. They were open to our recommendations and said they will consider them. They agreed that they should have done some things differently. They have said they will provide more information for people about the review and how it will happen. We will update this page and our advice and information pages as soon as we get any new information.

How you can get involved

Your support has helped us get this far. We are asking you to continue to lobby your MP. We need to keep telling them about the problems with PIP for people with epilepsy. We want you to tell them, they must do something to make things better.

Epilepsy Action are taking part in the Disability Benefits Consortium’s (DBC) ‘PIP Summer of Action’. We need you to get involved. With over 80 charities taking part the voice of disabled people and people with long-term health conditions will be louder than ever. We want to make sure that the voices of people with epilepsy are amongst those being heard.

Throughout the summer we want to support you to meet your local MPs and talk to them about PIP. It doesn’t matter if you’ve never met your MP before, or perhaps you see them every week! If you want MPs to be aware of the problems with PIP and you think they should be taking action, this is for you.

We have lots of information to help you get involved. You can download our step-by-step guide to campaigning. This will help you arrange a meeting with your MP, or if you are part of a group you could invite them along. The guide will give you ideas on what to say when you meet your MP. It will tell you what you can expect to happen during your meeting. The guide is available here. While you’re there you can ask them to take the Epilepsy Action PIP Pledge.

We want you to share where MP meetings are happening across the country, so make sure you tell us. Don’t worry, we won’t share any personal information about you.

If you can’t meet your MP locally, you can still support the PIP Summer of Action. You can share what other people are doing on social media using the hashtag #GetAGripOnPIP. You can also email your MP and ask them to take the Epilepsy Action PIP Pledge.

Event Date: 
Wednesday 14 September 2016 - 09:32

Comments: read the 29 comments or add yours

Comments

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. 

Regards

Diane

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.

Regards

Cherry  

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.

Regards

Cherry  

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

Thanks for your reply,I didnit win reconsideration and points dropped too.Going to see cab again tomorrow for tribunal advice before applying but I don't hold much faith in this and really find this whole thing very hard to deal with.Printed off some new info on epilepsy action re:PIP as advised from Epilepsy action after a call.Any extra help or guidance would be great,I just keep thinking I'll get knocked back again so is it all worth it or a waste of space? Many thanks,Christine

Submitted by CHRISTINE on

I was in receipt of DLA now twice refused PIP. I had to sit in the assessment room with flickering lights and the person who never introduced themselves or told me what knowledge they had of people who have epilepsy was unhappy that I asked if the lights could be turned off. It seems I was turned down because I was able to bend over and that because I was a bit overweight. I did explain that epileptics will have both good days and bad days. The good days are great and you can do all the normal things that everyone does but during bad days it's hard to function. They didn't seem bothered with the fact that I'd missed 4 months of employment in 2017 alone (June '17) and a further 6 weeks at the second assessment (December '17). My sick pay allowance is due to run out and any savings I had were used getting cabs to work when I was able to go. This is the harsh reality for not just epileptics but for many people with non visible ailments.

Submitted by Stephen Harrison on

Applied for pip a while back because someone said I should as I would probably be eligible. So went with it, I work and have occasional grandmal seizures that are quite bad but I still work and they awarded me the lower rate pip. Went in for re assessment and by that time seizures increased, broken my back over it and lost my job over it as I broke my back while going through a job change and got told I was no longer eligible. I didn’t expect that!

Submitted by Sam garner on

My wife (55) was hit by a car at the age of 3 and suffered head injuries, this led to problems at school in the 1960s she has had Epilepsy since the age of 13 won her tribunal yesterday after being awarded no points at her assessment in April last year.
The assessment criteria are flawed and do not take into consideration the fluctuations of the condition or the dangers that people with epilepsy face.

The assessment does not take into account that many people with epilepsy already have to make compromises because all the available medications for epilepsy have side effects and may also affect other medicines the individual has to take.

My wife’s epilepsy is reasonably well controlled but her seizures come with no warning and she still has at least one Tonic Clonic (Grand Mal) seizure a month she also has frequent Absence Seizure (Petit Mal) at other times.

The tribunal noted the Upper Tribunal ruling that in cases such as Epilepsy where seizures occur with no warning supervision is required during activities such as cooking and taking a bath and awarded 6 points before taking anything else into consideration.
In addition because my wife has memory problems (very possibly due to the medication she has to take to control the epilepsy) she has to have supervision when taking her medication to ensure she takes the correct dose when required. That gave an additional 1 point.

In addition because she has difficulty with reading and writing (whether due to the epilepsy medication or the head injury cannot be determined) she was awarded points for needing prompting to understand complex written information and also complex communication verbally. She was also awarded point for needing assistance with budgeting decisions.

Due to her memory problems and epilepsy (possibility of a seizure) she was awarded 12 points for the mobility component.

To prepare for the tribunal we requested her full medical history from her doctors and also from the hospital she attended, this did cost the maximum fee of £40 from each but by having her medical history allowed us to show her condition was relatively unchanged from the early 1960s to the present day.

The tribunal awarded both the daily living component and the mobility component at the enhanced rate giving the following scoring.

1 Preparing food (E needs supervision ) 4 points
3 Managing therapy (B supervision or prompting to manage medication) 1 point
4 Washing and bathing ( C needs supervision) 2 points
8 Reading (C needs prompting to understand complex written information) 2 points
9 Engaging with others (b needs prompting) 2 points
10 Budgeting decisions (b needs prompting or assistance to make complex budgeting decisions) 2 points

Mobility
1 planning and following journeys (F cannot follow the route of a familiar journey without another person) 12 points

Submitted by Guy Etchells on

I have be ignored by pip who did not take into account that I cannot be left alone and need 24 hour supervision. They also ignored the fact I have anxiety issues but cannot take medication for it do my anti convulsants.This also means that my husband has lost his carers allowance . I have grand mals and upto 60 absence seizures a day. In the last 3 years I’ve severely burnt myself 3 times during seizures ( hot water tap in the bathroom, kettle of boiling water over and more recently radiator in the bathroom) . Something needs to be done . I’m going through a mandatory decision with them at the moment. If I’m left alone I’d be dead end of .

Submitted by Anita Leadbetter on

The government's decision to review the decisions on PIPs is good, but the news coverage has indicated that it is focused on mental health issues. This doesn't seem to hold out much hope for people with epilepsy who are being discriminated against by the system. How can we ensure that our concerns get addressed in the review?

Submitted by Nigel Bennett on

Hi, I applied for pip in November 2016 when I had a letter saying my dla was coming to an end in February and I should apply to avoid any changes to my money after I applied I was told in December I'd been turned down and that I would be kicked off dla early for applying, I've been through the reconsideration and appealed to the lower tier via letter I'm now at the stage of appealing to the high tier court I'm just waiting on an appointment I'm hoping it should go well as this is the first time since the changes in November that I'm appealing, I have tonic chlonic seizures 3-4 times a week during my sleep by the way so I'm unable to work as I'm bed bound after a seizure and understanding able to do anything safely due to feeling delirious but according to the assessment team I can hold a pen and engage in conversation and keep eye contact and because I was well presented aswell instead of being dressed like a tramp, just because something looks OK don't mean it is

Submitted by Keiron on

I have epilepsy and was turned down with pip i appealed against it and won my advice if you have been turned down dont back off go for it and fight for what rightly yours dont back down and help other epileptics

Submitted by Jackie on

It's so upsetting my husband has had epilepsy nearly 5 year's the impact on his daily life is huge following this he's has 3 dvts one now chronic, bells palsy and severe depression. He was awarded 0 points. His md was received in there office on the 13th of Feb 2018 we got another big fat 0 in the post 14th Feb makes us think there was no time to read it let alone reconsider, we have read so many other refusals and have come to the conclusion they are scripted as had exactly same answers which are irrelevant to the questions. It's so frustrating and we will battle on to change this. Epilepsy changes people's lives forever and effects everything around the person they cannot understand this in a 40 min consultation. Good luck to everyone and I will keep you updated with his appeal.

Submitted by Fran on

To advise have been successful at a pip tribunal for my epilepsy
The most useful organisation (with fantastic resources re claiming benefits) I found was "Benefits and Work" I doubt I would have been successful without their help and the information I gathered from their site to make a case for my tribunal. So do not give up hope - people with epilepsy can get pip

Submitted by Jane on

Hi Jane

That’s excellent news. And very useful information about Benefits and Work. Thank you.

Important message not to give up hope.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

I went to tribunal to see if I can get PIP and the tribunal awarded me it for 18 months however I received a letter from PIP a couple of days later saying that they are going Her Majesty Courts and Tribunal because they want to ask permission to appeal the decision the tribunal made I didn’t know they could do that

Submitted by Victoria Williams on

My wife was switched over from DLA to PIP in December 2015 and was awarded 0 points so had to take it to tribunal and was awarded higher rate on both for 2 years. So once again we have just been through the whole assessment process but was a little more hopeful this time having been awarded it before and the supposed updated government guidance only to be awarded nothing yet again so it seems nothing has changed. The assessors/dwp staff will not at all take into consideration that it is not just the initial seizure but the after effects and side effects of the meds that have a massive impact on daily life. So once again we are going to have to go all the way to Tribrunal. It really is time this whole system was sorted out !

Submitted by Chris on

Had epilepsy since age 7 and it's not well controlled in spite of many med changes but only have minor focal seizures now but do lose awareness. I had been on DLA for 15 years and also SDA. When the change overs came for me I was lucky and was placed in the Support Group. Before the time ran out and I would have had to be reassessed, I received my State Pension. Later I was still waiting to hear about the PIP and seemed to be waiting forever so I applied of my own accord while still receiving DLA. Amazingly I was awarded the enhanced rates for both care and transport. This is all due to my consultant in my opinion. He was very understanding and helpful and wrote me several very good letters firstly stating that he saw no possibility of employment for me as my frequent seizures would be too disruptive and once I needed a letter for the PIP he wrote another very good one saying that I needed to be with someone pretty much 24/7 due to my post ictal wandering and couldn't go out alone or use public transport and should have someone with me when showering and cooking as I've scalded myself a few times, almost did with the microwave once when I dropped what I was removing from it while having a seizure and there are lots of other scenarios I wrote about myself on my forms and told the man who I had the face to face with. It only lasts a few mins but amazing the trouble you can get into when you're totally unaware what you're doing for just 5 mins a couple of times a week or more. My seizures, though only usually minor, turn up out of the blue with no apparent triggers and no warnings. I average between 4 - 6 a month. I also have early onset osteoporosis and have 2 hip and 1 knee replacement. I have a blood clotting disorder too and have to take meds for that and my osteoporosis is apparently worsening in spite of medication. It was the doctor's letter that did it for me, I'm sure. I told him how grateful I was. My GP was useless to be honest. So if possible, try to get a decent letter from a health professional, esp a consultant. I really never thought I'd get the PIP.

Submitted by Just me on

We should not have to go to court over pip we have a illness. The over people getting pip for drink and drugs they pick to do that we don't pick to have epilepsy. When we are scared to go to sleep sometimes

Submitted by Vicky Greaves on

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