We exist to improve the lives
of everyone affected by epilepsy

 

Welfare and benefits

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.

The government is now carrying out a review of current claims to see if those people might be entitled to more money. This is because of two Upper Tribunal rulings where the court ruled the government were interpreting the law incorrectly. There are other cases going through court at the moment. The impact of these rulings on people with epilepsy shows that when assessing the impact of epilepsy on someone’s life, the PIP assessment process is not fit for purpose. For more information on these reviews you can see our advice and information pages. You can also download this FAQ produced by the DWP. 

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 Action PIP Pledge. So far, 40 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.

Some of the MPs who have taken our PIP Pledge are working together to get a debate in parliament on the issue. This will mean the Minister for Disability will have to listen to the problems and then respond.

The APPG on epilepsy recently had a session on PIP and epilepsy. People with epilepsy were able to share their experiences in parliament and discuss what should change.

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

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.

Universal credit

The Government is introducing Universal Credit, which will replace the following benefits:

  • Child Tax Credit
  • Housing Benefit
  • Income Support
  • income-based Jobseeker’s Allowance (JSA)
  • income-related Employment and Support Allowance (ESA)
  • Working Tax Credit

If you already receive one of the above, the Government will eventually move you onto Universal Credit. The Government have said that they will start transferring people onto Universal Credit from July 2019. At first, a small number of people, around 10,000, will be moved in 2019. They hope to move everyone onto Universal Credit by December 2023.

Universal Credit will not be replacing Personal Independence Payments (PIP), and you will be able to continue to receive this benefit, or make a new claim for PIP.

Universal Credit has now been introduced across the UK, so if you make a new claim, or have to make a new claim due to a change of circumstance, you will have to apply for Universal Credit.

You can find out more about Universal Credit, and whether you would be eligible here.

Citizen’s Advice can also offer help and support with your Universal Credit claim.

At Epilepsy Action we would be interested to hear from you if you have been negatively affected by Universal Credit. If you would like to let us know your experiences, please do get in touch on 0113 210 8866 or email campaigns@epilepsy.org.uk.

Event Date: 
Wednesday 14 September 2016 (All day)

Comments: read the 26 comments or add yours

Comments

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

I have just had my postponement request turned down by a District Judge Lynn Griffin. I was due to have the hearing on the 25.5.18. this was almost six months to the day since I was told an appeal was allowed (from 27.11.17)
i had booked a holiday thinking it would be safe to to so and mistakenly thinking the hearing would be over by now!
I Hear now that hearings can take up anything from 6/12 to a year to be heard!
This is totally unacceptable to expect people to put their lives on hold just in case.
I have felt from the outset that DWP assessors do not appreciate life having seizures regularly as in my case 3 weekly or that despite this one has to stay positive and try to live a relatively normal life
I would be in big trouble if I was on my own as the seizures can be CPs or Tonic Clonics and very scarey for both me and him.
How does one get the DWP to listen.
I stand to have P:IP turned down due to my holiday and not attending.
I need a break as the situation is affecting my mood and i feel I am sinking into depression.
I aplogise for the rant but I expect you can tell I am very frustrated and angry

Submitted by madelin Bexon on

Court hearing postponement refused by district judge even though the wait is up to a year for a hearing and I had confirmation of booking!
The situation is unacceptable

Submitted by madelin Bexon on

I have had an appeal for postponement of a hearing turned down even though this was granted 27/11/17 and the date of hearing is 25.5.18 six months on.
I had booked a holiday as no mention of the common six month to a year wait was mentioned in the correspondence from DWP.
I hae seizures approx 3 weekly both CP andTonicClonic. They are horrendous for me and my family. This is not acceptable.

Submitted by madelin Bexon on

My husband has Focal Epilepsy. This kicks in when he gets upset or gets stressed out. I filled the form in for condition. He also has Osteoarthritis in both knees and hips, and a two inch crack in his right knee. Because of his condition, the only way of getting there was by taxi, and a 50 miles round trip. After his assessment being stressed out this, his epilepsy had kicked in, as a result his PIP was increased. The assessor seen it happening in front of him, and how I dealt with the situation. He had seen enough, and reached his decision there and then.

Submitted by James Banner-Rall on

Please remember these arrogant people sitting in offices think they are consultants but really have no experience of the epilepsy we suffer. My Complex Focal Epilepsy meant I had to give up work in case I stepped in front of a car/bus/train on the way. It is now that severe I can't leave the house by myself. On a review my claim was refused. Apparently I can follow a route quite safely by myself. Please Please Please appeal. The people who hold Appeals are intelligent and those who did the original reports tend not to argue because they will be shown just how thick they are. I won my Appeal quite easy

Submitted by David Clinton on

I got mine took off me because of reasons nothing to do with epilepsy like being able to walk,talk and knowing on how to spend my money. They ignored that I cant cook,travel by myself since my seizures and absences are unpredictable and I also took a calender what shows the amount of seizures and absences that have been witnessed. But I was able to get it back from writing a letter to DWP with citizen advices help.

Submitted by Matt on

I have had epilepsy for 4 years now & my claim for PIP has been rejected both times I try. I have randomly seizures all the time, I can only stay on my feet for so long without having to sit down. I’m on ESA but most of that is spent on rent & public travel. I’ve tried different job roles with minimal hours & still struggle which is causing me quite a lot of stress as I can’t provide for my 3 children the way I would like to. Help!

Submitted by Louis on

Hi Louis,

I’m sorry to hear you’ve had such a tough time. Unfortunately we are hearing all too regularly from people with epilepsy that they’ve been refused PIP. The good news is that a number of people are successful at appeal. And we are campaigning to improve things.

The first step in challenging a PIP decision is to ask for a mandatory reconsideration. If the decision hasn’t changed or you’re still unhappy with it after mandatory reconsideration the next step is to make an appeal. You might find our webpage on what to do if you’ve been refused pip useful. It has more information on both these processes.

You may also find it helpful to get in touch with the Citizens Advice or your local Welfare Rights Unit if you have one. They have welfare rights officers that can assist in benefit applications and appeals. They have a wealth of knowledge and experience with the welfare system that can be invaluable. They may be able to offer advice and support with the appeals process. They may even be able to represent you at an appeal.

You mentioned using your ESA for public travel. If you would be refused a driving licence because of your epilepsy you may be entitled to free bus travel (or half price in Northern Ireland) with a disabled persons bus pass. You might also be eligible for a disabled persons railcard. These cost £20 a year but get you a third of rail fares.

Turn2us have an online benefits calculator that you might find useful. This can look at your personal circumstances as a whole and tell you if there are any other benefits that you might be entitled to that you’re not currently getting.

Regards

Jess

Epilepsy Action Helpline Team

Submitted by rich on

I have had sleep epilepsy for 31 years now. I have been told by doctors and neurology doctors that having worked always even waking with headache and lately getting memory lose. This is out of order having pip taken away from me. I have to live at home still with my family. MP try epilepsy yourself.

Submitted by Chantelle on

Just received a letter signed by my MP appreciating contact about the application people with Epilepsy have to make for PIP. She promises support. It is all we can ask for and hope to get. The more people who do this the more chance of success.

Submitted by David Clinton on

Just had a reply from the MP dealing with the assessments for PIP. It gives some points that can be used in any claim that would be needed in an appeal. We need to keep going. Don't give up.

Submitted by David Clinton on

Just been refused my PIP....0 points.
Have sent off my appeal letter.
What was in report didn’t seem to correspond with what I spoke about in interview.....think they chose to only hear what they wanted to.
I’m ready to fight them all the way...👍

Submitted by Pauline on

Dear Pauline

 

We completely understand your frustration. Our advice and information service receives many enquiries about Personal Independence Payment and the assessment process.

 

We have heard from many people who have been refused PIP but when they have asked for a reconsideration or appealed many have had the decision changed.

 

Going through the appeal process can be a challenge, as the rules can be quite complicated. If you haven’t already, you may wish to view our information on PIP and epilepsy.  As you think you have been assessed wrongly, 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 appeals.

 

Please do let us know how things go for you.

 

Regards

 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

I’ve just had a pip assessment of no care and enhanced mobility award. I was moving from high care and low mobility on DLA. So it’s around a £200/m drop in income. I understand this can be appealed but I fear of losing the mobility component that I got so I will not be appealing.
I thought the Government was changing it’s assessments to give more weight to safety and as I have no warning of gran mal seizures of 2-3 per week I need constant supervision. Are the assessors actually ignoring the new ruling and guidance from the Government because it’s certainly seems they are?
Is there a way to find out if this is the case?

Submitted by Ralph on

Apologies for the long rant, but i need to get this out. I had my PIP tribunal the other day, after a whole year of waiting for it. I got advice from citizens advice who also supplied me with a bit of upper tribunal case law which relates to the 50% rule. They were 100% sure i would win.

I lost.

On DLA i was awarded medium for care and lower for mobility, on being made to apply to PIP i got nothing for daily living and higher mobility. After a mandatory reconsideration they awarded me 7 points for daily living, one short of what i needed. My condition has not improved, i am refractory and have multiple complex partial seizures a day, and tonic clonics a little less often. I'm heartbroken, and feel like the tribunal had already made their minds up before i got there. They kept replying to everything i said with quotes from the Atos assessor. I had all my notes with me and still got flustered. They also ignored the Upper Tribunal case law. This is affecting my life. I can no longer do things that i could before, and now i'm being forced into work against medical advice. I feel like the system has failed me and continues to fail people with epilepsy in general. A big part of them refusing me seemed to be because i live on my own, even though the assessment is supposed to be about what help you NEED rather than what you have. Both the Atos assessors and the tribunal appear to have judged me on how i looked on the day, despite me having more than one invisible disability, all of which i had evidence for.

I feel like i've been ignored, unheard and mistreated. But ever tried applying for PIP for anything not immediately visible? This isn't just people with epilepsy. The system is also biased against other hidden disorders like mental health issues, auto-immune diseases, autism, dementia, heart disease and type one diabetes. We need to get rid of Atos and other assessors like them, and stop treating disabled people automatically like they're liars.

Submitted by Amanda-Louise Finlay on

The new guidelines for pip & epilepsy are being totally ignored by the DWP. Had another assessor visit me in my house , wrote down everything about my condition and that i need a full time carer. Had letters from everyone involved in my condition etc ......

I got awarded the standard rate with no care for a period of 10 YEARS.

Already wasted time on previous (Paper) tribunals .... and not worth the trouble for all the people involved that care or look after me.

I should really take up alcoholism or drug addiction as they treat you like a human being with either of those conditions.

Submitted by Alex on

I suffer with epilsey also depressing.at my assment I got a copy of the assment.she did not write down what I told her.she made a lot of mistakes that look like I have got 0points. how can these assers get away with this.also I was adwared 2years money from tribual till august 2019.now I have had another assment.i have been told their desion in febuary is if I am not entiled to pip my money will be stoped straight away 6 monts early from what the tribunal said how can they go against ba judges desion

Submitted by ritadoody doody on

Hi

 

Thanks for your message. I can understanding how frustrating and stressful this must be for you.

 

Unfortunately we hear all too often from people that they have had problems with the PIP assessments. And this is why we are campaigning to improve things.

 

The Department for Work and Pensions (DWP) can review your award for PIP at any time, even if you have an award for a fixed amount of time. So if you haven’t already it would be a good idea to get in touch with the Citizens Advice or your local Welfare Rights Unit if you have one. They have welfare rights officers that can assist in benefit applications and appeals. They have a wealth of knowledge and experience with the welfare system that can be invaluable. If your claim is refused in February they could help you with the appeals process.  They may even be able to represent you at an appeal.

 

If there are things in the medical report that are incorrect you could also consider making a complaint to DWP. Turn2us have a guide on making a complaint with DWP that you might find useful.

 

Regards

 

Jess

Epilepsy Action Helpline Team

Submitted by rich on

I have epilepsy and was refused PIP.Despite my uncontrolled condition I scored very few points.Factors which influenced the decision included that my appearance was smart and that I was intelligent.The assessor had no obvious knowledge about epilepsy and similar to a previous comment I barely recognised the description of me given in the assessment.What really shocked me was that when the decision came through it stated that I had had a petit mal during the interview which I had no awareness of at or after the interview.I have therefore no lucid memory of what I said.Anyone with knowledge of epilepsy would surely have abandoned the assessment. My feeling was my supposed intelligence (I have a degree) really went against me which shows a Victorian understanding of epilepsy. I asked for a review but had no success.They made the decision mid 2017 will they be looking at it again ?Is there anyway to find out?

Submitted by Caroline on

Hi Caroline

This sounds to have been a difficult experience for you. The PIP process hasn’t been an easy one for many people with epilepsy.

There have been 2 changes to the PIP process for assessing epilepsy which you can read about here.

The government website explains that they are looking at all current claims and also any claims they decided on or after 9 March 2017 where they did not award PIP. So if your claim was made after this date it should be one that they are looking at again. You might like to look at the government information to read about this further:

It doesn’t mention who you can contact, just that they will write to you if they decide you are entitled to any money following the review.

It may be helpful to speak to a trained benefits adviser about your situation. They may know more about the timescale for this review and they may also be able to advise you if you have any grounds for an out of time appeal due to your circumstances at the assessment. Our page on what to do if you’ve been refused PIP gives details of benefits advice organisations that may be able to help.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by rich on