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Personal Independence Payment (PIP) and epilepsy

This information is for people living in England, Scotland and Wales. For Personal Independence Payment information in Northern Ireland visit nidirect. If you are looking for information about benefits in another country, please contact your local epilepsy organisation.

COVID-19 update

  • From 24 March 2020, all benefit reviews and re-assessments have been suspended for three months
  • People will continue to receive their payments and you can still submit new applications
  • The only assessments DWP are doing are new applications and when someone reports a change of circumstances
  • All assessments are happening over the phone
  • You can have a carer or somebody else on the call to help you answer questions

July 2020. Face-to-face assessments remain suspended but under review.

What is Personal Independence Payment (PIP)

PIP is a benefit which helps with some of the extra costs caused by long-term ill-health or disability. You must be aged 16 or over and have not reached state pension age to claim PIP.
You can receive it whether you are in work or not. PIP is not means-tested and is tax-free.

What will I get?

You could get between £23.60 and £151.40 a week. How much you get is based on how your condition affects your ability to complete certain tasks, not on having a particular condition.
PIP is made up of 2 components (parts). You can be paid either the daily living component, or the mobility component, or both components at the same time. Whether you get one component or both depends on how your condition affects you. Each component is paid at a standard or enhanced rate depending on whether your abilities are limited or severely limited.

Rates of PIP

Daily living component weekly rate
Standard: £59.70
Enhanced: £89.15

Mobility component weekly rate
Standard: £23.60
Enhanced: £62.25

These amounts were correct in April 2020.

You will need an assessment to work out the level of help you get. You score points according to how difficult it is for you to carry out a list of activities. You need to score at least 8 points to be entitled to the standard rate and at least 12 points to be entitled to the enhanced rate. This is the same for each component.  

Can I get PIP?

To qualify for PIP you must be between 16 and your State Pension age. You must have a long-term health condition or disability, and have difficulty with activities of daily living or with mobility. You must have had these difficulties for at least 3 months and expect them to last for at least 9 months. You can get PIP whether or not you're working.

Daily living difficulties

You may get the daily living component of PIP if you need help with things like:

  • Preparing or eating food
  • Washing, bathing and using the toilet
  • Dressing and undressing
  • Reading and communicating
  • Managing your medicines or treatments
  • Making decisions about money
  • Engaging with other people
  • Mobility difficulties

 

You may get the mobility component of PIP if you need help with going out or moving around.

I am under 16 or of State Pension age. What can I claim instead of PIP?

If you are under 16, you can apply for Disability Living Allowance (DLA).
If you have reached State Pension age you can apply for Attendance Allowance.

I currently get DLA. How will PIP affect me?

DLA is ending for people who were born after 8 April 1948 and are 16 or over. If you are in this age group and are currently claiming DLA, you will continue to get it until the Department for Work and Pensions (DWP) writes to you to:

  • Tell you when your DLA claim will end and
  • Invite you to apply for PIP

How do I claim PIP?

View a diagram showing the claim process - download the pdf View a diagram showing the claim process, or read on to find out more about each stage.

DWP have made some videos to explain more about the PIP assessment process.

To start your claim call the DWP on 0800 917 2222. Someone can make the call on your behalf, but you need to be with them when they call. Lines are open Monday to Friday 8am to 6pm. Making your claim by phone means your claim starts from the date of the phone call.

You can also write to the address below and ask for a form. Bear in mind this can delay the decision on your claim, as the form can take 2 weeks to arrive.

Personal Independence Payment New Claims  
Post Handling Site B  
Wolverhampton  
WV99 1AH

For more information on how to claim, including what information you'll need to provide, visit the government website.  

How is the PIP assessment made?

Completing the form

Once you have told the DWP you want to claim PIP, they will send you a form called ‘How your disability affects you'. You need to complete and return the form within one calendar month.
You can see an example of the form on the Citizens Advice website.

General guidance on answering the questions

It's not that easy to complete this form if you have a variable condition such as epilepsy. Hopefully this guidance will help you get across the important information about how your epilepsy affects you.

The ‘50 per cent rule'
With a variable condition like epilepsy, you must need help at least 50% (half) of the time to qualify for PIP. This will be considered over a 12-month period, looking back 3 months and forward 9 months. However an Upper Tribunal ruling in March 2017 instructed the DWP when considering safety and supervision for a person applying for PIP, to bear in mind 2 things. When carrying out an activity:

  • How likely it is that you would come to harm
  • How serious that harm could be

The greater the possible harm, the less attention the assessor will need to pay to how likely it is that it would happen. For people with uncontrolled epilepsy there is always the risk of having a seizure. The level of harm you could come to would depend on what type of seizures you have and how unpredictable they are.

If you are struggling to fit this information in the body of the form you could always add it in the Extra Information box at the end of the form.
You can find more information about eligibility for PIP on the government website.

Questions 1 and 2

These questions are about your health conditions and medicines, including any side-effects you get. They also ask for details of your healthcare professionals. Whoever you put down in this section, they need to know about how you manage your daily activities. If necessary, make an appointment to see them. This gives you the opportunity to make sure they have all the information they need about you.

Questions 3 to 12

These questions are about your ability to carry out daily activities. Each question has tick boxes, and space to describe how your health condition or disability affects your ability to carry out that activity. Points are scored if you are not able to carry out an activity reliably. ‘Reliably' here means safely, to an acceptable standard, repeatedly and in a reasonable time.

Questions 13 and 14

DWP will not consider psychological distress that may be involved in moving around. But they will still need to consider the likelihood and seriousness of harm you may come to.
For more advice about how to answer these questions and how to describe how your condition affects you, see pages 15-21 of the Disability Rights UK PIP factsheet. Also see our section below on explaining your epilepsy.

Question 15

This question asks for any extra information about your health condition or disability and how it affects you.

Supporting evidence

As well as completing the form, the DWP encourages you to send copies of any supporting evidence you have. Getting clear supporting evidence can make a real difference to how successful your claim is. This evidence could include:

  • Prescription lists
  • Care plans
  • Seizure diaries
  • Reports from healthcare professionals
  • Letter from your social worker or carer, or a relative or friend who helps you and knows about your difficulties
  • Contact details of anyone involved in your care

Sleep seizures

If you have sleep seizures, this should not be an automatic reason to give you no points. The following could affect your ability to carry out the tasks in the PIP questionnaire:

  • If the effect of sleep seizures continues into the following day, or
  • Your memory is affected, or
  • You are having problems with side-effects of your epilepsy medicine

If the way your epilepsy affects you varies over time, you could send a diary to show the difficulties you have over a number of days or weeks. Make it clear if you are estimating. Also say how you are on your good days and your bad days. And give an idea of how often you have bad days and how the way in which you’re affected changes from day to day.
Make sure you include information on any health conditions you have, not just your epilepsy. Describe how they affect your daily living and your mobility.

The DWP has said there are things which it is not useful to send:

  • Appointment letters or cards
  • Letters arranging hospital admissions
  • General information or factsheets about your condition
  • Information about tests you’re going to have
  • Bus or train tickets to appointments you’ve attended
  • Information you’ve sent to DWP before for PIP

You can find more information about keeping a diary to support your claim in Appendix D of the Disability Rights UK PIP fact sheet.

Help completing the form

We recommend that you use our information together with the Citizens Advice guide to completing the PIP form.
If possible, make an appointment with a welfare rights unit such as Citizens Advice, to help you complete the form. To make the most of your appointment time, make a rough draft of your answers to take with you. And take our PIP and epilepsy information too. This will give you the best chance of making a successful claim.

The gov.uk website also has a list of community support organisations where you may be able to get help.

Returning the form

You need to return the form within one calendar month of receiving it. Always keep at least one copy of it. If you need to include extra pages make sure each page has on it:

  • Your name and
  • Your National Insurance number and
  • The question number that the information is related to

The PIP assessment

We want the government to make the assessment process fairer for people with epilepsy.

Ask your MP to take the PIP Pledge

The face-to-face assessment

Once the DWP has received your form, you will be invited for an assessment with a healthcare professional. The DWP may also contact your doctor, consultant or other healthcare professionals treating you, for more information before your assessment. The assessment takes place in an examination centre, or in your home, depending on which area of the country you live in. If you have to go to them, you can claim travel expenses. You should be given 7 days' notice of an assessment.

Don't expect the assessor to be ‘on your side'. They are there to ask questions, not make sure you get PIP.

Take someone with you

You can take someone with you to the assessment. Ideally this will be someone who can help you feel as relaxed as possible. They will not be able to answer the questions for you, but they are allowed to add information, if you want them to. They could also remind you to look at your notes, if there are things you don't remember.

Make notes beforehand

A lot of people understandably get anxious about the PIP assessment. And a lot of people with epilepsy have problems with their memory. This can make it difficult to get all your information across. Go through your form and make notes beforehand of the things you think will be most important to say. This can really help once you are in the assessment. Take your notes with you to the interview, along with anything else you think might help.

Also Citizens Advice has a good PIP assessment helpsheet.

Ask to make a recording

You can ask to make a recording of the face-to-face PIP assessment. You will need:

  • Your own recording equipment. This does not include mobile phone or laptop
  • To be able to create 2 identical copies
  • To be able to give one to the healthcare professional at the end of the assessment
  • To make your request well before the day of your assessment. You can do this by calling the Enquiry Centre on 0808 1788 114.

For more information visit the Capita website.

Video
In June 2018 the government decided to make legal the introduction of video recording the assessment. This is partly in response to the lack of trust voiced by so many people about Capita and Atos. It has been trialled in one centre. The DWP are now looking at how they might roll it out across the country.

Explaining your epilepsy

The interview will be with a healthcare professional, but they might only have a basic understanding of epilepsy. Make sure you can explain clearly about your epilepsy and how it affects you. Don't just talk about your seizure frequency. They need to know about all possible impact on your life, including such things as anxiety and memory problems.

You could use the list below to make notes about your situation. You can then take your notes with you to the interview. If you have a seizure diary, you could take this to the interview to help you explain your seizure pattern.

Here is a list of the sorts of things that a person with epilepsy may need to mention in their PIP interview:

Causes

  • If there is a particular cause for your epilepsy – for example a brain tumour

Seizures

  • What happens to you before a seizure. If you get a warning or 'aura' before a tonic-clonic seizure, this warning is a specific type of seizure. It's important to describe it as a seizure to the assessor
  • What happens to you during a seizure
  • How often you lose control of your bladder or bowels and any anxiety that may cause
  • How likely it is that you would come to harm if you had a seizure
  • How much harm you might come to if you had a seizure

Recovery

  • What your seizure recovery is like – for example whether you need to go to sleep, or if your awareness is affected and how much help you need afterwards
  • How long it takes you to recover from a seizure
  • Whether you have had to go to hospital because of a seizure
  • Whether you have recently been injured during a seizure – for example cut your head

Medicines

  • Whether rescue medicine has been given to you by a carer or health professional after a seizure
  • Any side-effects you get from your medicines

Other issues

  • Any support you are given by a partner or carer
  • Whether your memory and/or concentration are affected
  • Any other impact your epilepsy may have on your life
  • Any relevant information about other health conditions

Answering the questions
The healthcare professional will ask you questions about your day-to-day life, your home, how you manage at work if you have a job, and about any social activities you do (or have had to give up). They may ask you to describe a typical day in your life. When answering, try to explain your difficulties as fully as you can. Tell them about any pain or tiredness you feel, or would feel, while carrying out tasks, both on the day of the examination and over time. Consider how you would feel if you had to do the same task repeatedly. Tell them if you need reminding or encouraging to complete the tasks. Don't just answer yes or no. try to give them full information about your situation.

Don't overestimate your ability to do things
Make sure you are honest about how these activities would feel on a bad day, rather than a good day. Sounding positive about your condition is really useful in general life, but will not help to get you the financial support you may need.

Take your time
Don't let the examiner rush you. The way to get the fairest decision is to be able to get relevant information across to them.

Medical examination
The healthcare professional may, with your consent, give you a brief medical examination.
But mostly they will observe how you are during the interview. They may also ask how you got to the interview.

At the end of the interview
At the end of the interview the healthcare professional should give you an overview of how they see your situation. And you should get an opportunity to ask questions and add any final information. 

The decision

The healthcare professional sends a report to the Department for Work and Pensions (DWP) case manager. They make the final decision.

You will be sent a letter giving their decision and explaining how the decision was made. If you are entitled to PIP, you will be told at what rate and for how long you will be entitled to it.

Getting a PIP award can make a real difference to how you manage financially. So it can be really upsetting to be told you are not entitled to PIP, especially if you have had this (or Disability Living Allowance) before. This can be especially true if the letter does not seem to reflect what you said in the assessment. Try to be prepared for this and for what you might want to do next. This can make the decision feel a little less difficult.

Your needs will be regularly reassessed to make sure you're getting the right support. If there's a change in how your condition affects you, you need to tell the DWP straight away.

Getting PIP may mean that you're now entitled to other benefits, or that your other benefits increase. Make sure you check this out with a welfare rights worker. For example, if anyone in your household is getting PIP, you won't be subject to the benefits cap. Or if you lose PIP, if someone was getting carer's allowance for you, they may no longer be entitled to it.

What can I do if I've been refused PIP?

If you're not happy with the decision because you have scored no points or not as many as you feel you should have, you can ask the DWP to look at your case again. This is called a mandatory reconsideration. You have one calendar month from the date of your decision letter to request this.

Mandatory reconsideration

If you’re not sure whether to ask for mandatory reconsideration or what evidence to give, call the benefits office dealing with your claim. They’ll be able to explain the reason for your benefit decision and answer any questions. You can still ask for mandatory reconsideration after you’ve spoken to your benefits office.

The Department for Work and Pensions has changed its PIP assessment process in two areas: ‘safety and supervision when carrying out activities' and ‘overwhelming psychological distress and journeys'. They are reviewing all PIP claims made before March 2017 to see if they should have awarded more money. They are also looking again at claims where they didn't award PIP. This may mean some people will get more money, or be awarded PIP when they were previously rejected. To find out more and to see if your PIP case will be reviewed, visit the following pages at gov.uk:

Safety and supervision: changes to PIP law from 9 March 2017

Overwhelming psychological distress and journeys: changes to PIP law from 28 November 2016

Once the DWP has made its decision about whether you are entitled to PIP, there are 3 aspects you could challenge. You may want to challenge the actual decision (if they have refused you PIP) or the rate or the length of time of the benefit award.

Bear in mind that if you are challenging the rate or length of time, the DWP will look at your whole claim again. This could result in you being awarded less than with the first decision.

You can also ask for a reconsideration if your condition worsens. But be aware your benefit could go down as well as up. It's always good to get advice before you do this. One of the useful organisations listed below may be able to help you with this.

How to ask for a mandatory reconsideration

You have one month from the date on the decision letter to ask for a mandatory reconsideration.

You can either:

Use the form CRMRI to ask for a mandatory reconsideration. You can complete it online and then print it out. There are notes to help you with this process or

Phone the number on the decision letter. It is a quicker process to make the phone call. When you speak to them you should:

  • Ask for a reconsideration of the decision and explain why you want it and
  • Ask for copies of any evidence they used to make their decision and
  • Ask them not to take any further action until you've had a chance to respond to their evidence

As well as the phone call, write them a letter asking for the evidence, and keep a copy. If you haven't heard anything in 2 weeks, phone them again.

Once you have received the evidence you should have a better idea of why the decision was made and how to challenge it. For example, you might have said on the form that you need help with a certain task, but the healthcare professional who carried out the face-to-face interview disagrees. If possible, you could collect medical evidence to show that what you said on the form was correct, for example a letter from your healthcare professional confirming your difficulties.

Once you have gathered evidence to support your case, send it to the address on the decision letter. A case manager will look at the further evidence you send. They will then write back to you with their decision.

If the DWP don't change their mind they will send you a mandatory reconsideration notice which proves that you have asked for a reconsideration. You will need this if you want to lodge an appeal.

If you still want to challenge the decision, you now have one calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal.

Appeal success rate

According to the DWP's own data, of the new PIP claims made where epilepsy was the main condition, 60 per cent (about two thirds) were refused. These are numbers for claims between April 2013 and February 2020. And out of the number of people who appealed these decisions, 66 per cent (about two thirds) were settled in favour of the claimant.

Appealing

This is a lengthy process and can be quite draining. But try not to be put off if you think the decision is wrong.

In order to appeal, you must have asked for a mandatory reconsideration first. You will have to download a copy of the official notice of appeal form SSCS1. You will need to submit your appeal to the Social Security and Child Support Tribunal. Alternatively, you can phone your local HM Courts and Tribunals Service (HMCTS) and ask to be sent the appeal form. The Tribunal is part of the court system and not part of the DWP.
HMCTS website: courttribunalfinder

When you fill out the form, it will ask if you want your appeal to be decided with or without a hearing. Your chances of a successful appeal are much higher if you ask for a hearing and, if possible, you have someone to represent you. You may be able to get a welfare rights benefits worker to help you with your appeal. Try your nearest Citizens Advice or Welfare Rights Unit.
When you appeal, you may find it helps your case to mention the Upper Tribunal ruling described above. It would be a good idea to get advice on this from a benefits law advice service, such as the Disability Law Service.

Your appeal will be heard by an independent appeal tribunal. Tribunals are informal, and you can take someone with you for support.

You will usually get the decision very soon afterwards.

For more information on appeals and reconsiderations see Disability Rights UK's appeals and reconsiderations information.

Epilepsy Action has a list of useful organisations for help with benefits

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action freephone Helpline on 0808 800 5050.

Code: 
F120.12

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated July 2020
    To be reviewed April 2021

Comments: read the 25 comments or add yours

Comments

I received four points for care in regards to safety, cooking and washing.
My memory issues were completely dismissed as not even existing. This is despite it being a side effect of my medication and condition.
I accept I might not have filled the form in properly because the person helping didn't know how to do it either.
But how do you provide evidence of memory problems for those descriptors. I knew where I went to school, I struggled with the memory test but you have no impairment.
Bizarre really as I can't plan a journey-I can't process it, get muddled, forget and I scored the full 12 points, though they may decide that was on safety because it's not clear it's either or.

Submitted by Sam on

My partner suffers with epilepsy, she currently receives esa support group contributions based, this was won on appeal. We now find ourselves fighting the change over from flat to pip, she scored 0 point and this is with medical evidence and supporting letter from her gp. She also suffers with a learning difficulties, I have asked for a mandatory reconsideration and yet again she scored 0 points. This is now awaiting tribunal appeals wow how much is all this costing? The pip phoned the other week, saying that before they send the case notes off to the courts they have looked at the case notes and decided that she can have full mobility, they say she not scored enough for the daily living. I really do not understand why you need a mobility car out and about cause you need help but do not need help at home!!!! I have said take this to appeal but there is a 37 week wait we are only on week 10. These benifit people really do not understand epilepsy we had a nurse come around saying she was epilepsy trained ha ha think she ment she had done a weeks course. This is all so frustrating I understand that the benifit system needs to change but when you clearly have evidence off your doctors what is this all about!!!!

Submitted by William Martin on

Hi William
Yes, applying for PIP can be a deeply frustrating process. Epilepsy Action have beencampaigning for changes to this as we definitely feel many people with epilepsy have not been treated fairly.

Although your partner has been refused at first and at mandatory reconsideration, there is still a chance that she will be successful on appeal. This has certainly happened for other people with epilepsy we have spoken to.

Hopefully you have seen our separate page on what to do if you have been refused PIP.

Regards
Cherry 
Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on

I have uncontrolled, daily seizures and was awarded 12 points mobility and only 6 for care. 4 for making a meal, even though I do not cook at all.
2 for washing as I need assistance or prompting.
My main problem is during a seizure and afterwards. I can’t see, hear, speak. Am not aware of anybody or anything. But because the assessor didn’t witness this apparently I’m fine.
Everything I told her was written down then disregarded and she put in her opinion which is what the DM went with near enough word for word in his report.
Ive put in an MR even though I risk what I’ve been already awarded. I shall take it to tribuneral if necessary.
Surely I should come under the pip safety requirements .
As I’m a liability to myself and possibly others on a daily basis which could be a matter of life or death

Submitted by Susan Cartlidge on

i have full on convulsions the epilim wasnt enough to stop them and now i take a mix of tegretol i have real bad memory loss though
and i now dont have seizes i cant understand why the doctors and specialists cant get the medication right for you guys ?

Submitted by glen prattley on

my son has tonic clonic seizures that are controlled and partial complex seizures that are very poorly controlled. he suffers with severe depression, his hypocampus is very badly damaged from meningitis as a baby. he is severely underweight and has severe memory problems. He received DLA for years and has been turned down for PIP twice. they say because he lives alone and can manage independently he is fine. I am his carer, he desperatly wants his independence, but need help with budgeting, taking his medication and remembering to eat and drink sufficiently at 5'11 he weighs 8st 5lbs and they have reported he is well nourished. I am at my wits end with it. we will go to tribunal, I will fight this all the way. all he wants is enough money to pay his bills and food. at present, I am buying his food. any advice would be very useful.

Submitted by Maureen Brindley on

Dear Maureen

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

We have heard from many people who have been refused PIP but when they have gone to an appeal many have had the decision changed. Applying for benefits or going through an appeal 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.  If you think you son has 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 reconsiderations and appeals.

If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk  or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm

Regards
Diane
Epilepsy Action Helpline Team

Submitted by rich on

i have just had information, (verbaly)that my daily living component of pip has been cut and my mobility enhanced to top level. does this mean a total cut in daily living or maybe just partial.? anyone know?

Submitted by craig thomas on

Hi Craig, 

Whether or not it is a total or partial cut of your daily living component will depend on your individual circumstances. It might be a good idea to check this with the DWP.

Regards 

Jessica

Epilepsy Action Helpline Team

Submitted by rich on

I really need some advice. I was stopped PIP last December. Living on £210 a fortnight esa. I am waiting to go with a solicitor which he will take 33% & has assured me i will win. Not only for epilepsy but for other medical issues cyst on brain had radiation. Growth o my intestine had an operation left me with bowel probs. Depression. Tried to OD. Phoned up PIP. Went through all security questions. Told them they will have blood on there hands & i am going to take overdose of all my medication. As i cant live with my medical problems. Next half an hour i had Police & Ambulance at my door. Just want to ask all of you people do you think i will get back my PIP? I will be so happy with replies. Thank you.

Submitted by Philomena on

Hi,

Thank you for your message. 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 some people are successful at appeal. And we are campaigning to improve things.

If you would like to talk to us about this you could give us a call on our freephone helpline 0808 800 5050. We are open Monday to Friday 8.30am-5.30pm.

Regards

Jess

Epilepsy Action Helpline Team

Submitted by rich on

I was working back in 2000 and in 2005 my epilepsy was triggered n, I wasn't even allowed to claim for PIP or DLA it had to be UC (when it came into force, it was JSA before) because I had worked in the past n, now I have seizures nearly every week. The last one was when I was walking down the side of a main road and the DWP's answer was to put me on a CSCS Course costing nearly £400 n, the best bit I wont be able to use it when I have it.

Submitted by Anthony Marchant on

Had my DLA stopped in October after being told by DWP that I did not it anymore. Have a case being dealt with by the HM Appeals Court and waiting for their outcome. The DWP had letters from my Consultant and GP about my epilepsy, but did not agree. They have made me so angry that I am now at the end of my driving lesson, after giving false information to the DVLA and hope to pass before Christmas and start a new career in training to become a lorry driver. Even wrote to my local MP and sent copies of medical reports, but he was not too concerned..

Submitted by Paul Tucker on

I have just received my pip claim and scored 4 for daily living.
I have clonic Tonic seizures and 4-10 focal a day. My husband does everything and I try hard to not let this get me down, yes I did try suicid once as it is awful thing to put on others. How can I score just 4! - 2 for cooking and 2 for bath! The questions do not reflect any of the difficulties I have constantly. My husband does all food and if he is not there can not have drinks or we get my son to visit to make them. He sorts all medication out as I am unable to remember to take amounts as so many. I find word finding and memory difficult and although I can read I have to do so several times to understand and ensure with others it is correct. I have good friends who visit but limited and texts from them are nice.
My husband deals with all income budget and I could not work out change without support. I am so struggling to see how I can not be entitled to a higher score. I even asked this with my husbands help! The issues and goals do not reflect my needs. What should I do?

Submitted by Jo on

Dear Jo

Thank you for your post.

We completely understand your frustration. Our advice and information line receives many calls 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.

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, you may wish to view the above information on PIP and epilepsy.  

If 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 reconsiderations and appeals.

If we can be of any more help, please feel free to contact us directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on

I've just received the enhanced mobility portion of pip.
I'm on ESA for having epilepsy, if I was to get a car through the motability scheme would I lose my ESA?
I've been told it's a trap.

Any advice would be appreciated as I've taken a deduction in money already and I don't want to lose the lot.

Thanks in advance 😁

Submitted by Charles on

Hi Charles

We aren’t benefits advisers so can’t say whether getting a car through the motability scheme will affect your ESA.

The CAB website has some information about the motability scheme:

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/help-for-disabled-travellers1/motability-scheme/getting-a-motability-car/

 

You may be able to get more guidance from the CAB or another benefits adviser about this. We have information about how to get benefits advice here:

https://www.epilepsy.org.uk/info/daily-life/benefits/useful-organisations

 

I hope you can find the information you need.

 

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy... on

I just want to share our story since it may give others hope. My Son received DLA for many years and then was not successful when changed over to PIP, they scored him just 5 points. I took it to Mandatory Reconsideration and the decision was still upheld. So I then took it to a Court Appeal where he was awarded 25 points! The whole process took just over a year and even I was almost at breaking point myself (I consider myself quite a strong person!) since I really didn’t feel anyone from the DWP was listening to us and I found the whole process so unfair!

From 5 points to 25 points- you couldn’t even make it up could you! Funny how all the way through, the decision was down to the DWP yet when it’s in court they're not DWP. I think ones a judge, one is a Doctor and one is a Disability Specialist? Something like that anyway, they’re independent and nothin to do with the DWP.

Don’t lose hope and keep fighting the b@stards xxx

Submitted by Stacey on

Having looked at the advice you give on making a claim, may I suggest an addition.
Due to a letter from the DWP stating that my application had not been received I made inquiries as to what happened to an application, after I had posted it. It turns out that the envelope is opened when it arrives at the sorting office nearest to the pips office, scanned, digitalised and then sent over the net to the DWP.
This scanning etc is carried out by an outside body, quite whom I was unable to find out.
My point being, send the paperwork Registered mail and requiring a signature by the recipients, my application which contained some 50 pages of additional medical documents went missing.

Submitted by Chris on

Hi Chris. Thank you for your feedback. This isn’t a system that we are aware of but it is something we will look into and bear in mind for our information update.

Regards

Mags

Epilepsy Action Helpline team

Submitted by Mags - Epilepsy... on

Hello I am a epilepsy sufferer who has claimed DLA since 1994. When contacted this year to claim PIP went through that process had face to face at home and am waiting now for the dreaded decision letter to arrive.Its longer than 6 weeks now so I'm concerned obviously. Our post isn't exactly reliable &:I receive mail for people nearby regularly so I'm worried it's been delivered to the wrong address and discarded.Not all people will take it to the correct address like I do if I get other people'smail.What should I do?

Submitted by Tracey Williams on

Hi Tracey

Thank you for your comment. Perhaps it would be a good idea to get in contact with the Department of Work and Pensions (DWP) to follow up on your claim. The telephone number for existing claims is 0800 587 0932.They should be able to tell you whether a decision has been made, if a letter has been sent out to you, and if so when it was sent. If they have sent you out a letter that you haven’t received it, they should be able to write to you again. They may even be able to tell you their decision over the phone.

I hope you receive your letter soon, and the decision is the one you’re hoping for. But if you have any further problems, or need advice once you’ve received your letter, please feel free to contact the Epilepsy Action Helpline freephone 0808 800 5050. We are open Monday to Thursday 8.30am-8pm, Friday 8.30am-4.30pm and Saturday 10am-4pm.

Regards

Jess

Epilepsy Action Helpline Team

Submitted by Jess - Epilepsy... on

Chris's comments above are correct as it has also happened to me which I discovered through a phone call asking if I had sent back my form and the date it was done.

This needs to be raised and at the highest level because peoples claim forms should not be lost or otherwise especially on proof of posting. The mail handling centre is supposed to be secure.

The point being if a postman can be prosecuted for interferring with the mail why arn't these contractors and what's the DWP doing about it - apart from sending out new forms.

So when will you be updating your information because your readers and others should be made aware of this because it should not be happening.

Keep up the good work

Submitted by Tony on

Hi Tony

Yes this is a concern. Our Campaigns team are continually monitoring this issue. Thank you for flagging this up.

 

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep... on

I had my PIP result today and lost the daily living component. I retained the mobility at the enhanced rate. If I ask for a mandatory reconsideration on the daily living and lose it will I lose my whole award if this were to happen I would rather not proceed as something is better than nothing and I dont have any more fight left for another year of this as I have ESA to prepare for in June as well so just all to much.

Submitted by Elizabeth Vidler on

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