PIP, DLA and AA
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PIP HELP (EPILEPSY)

karl87karl87 Member Posts: 3 Listener
edited February 2018 in PIP, DLA and AA
I've just received a letter from the tribunal about my PIP saying that I am not going to be getting daily living because I only got 5 points but I will be getting enhanced mobility got 12 points for that before I had no points on any. I do believe tho that I should be getting some living allowance with that. Is this true do you think an how should or can I go about this??? 

Replies

  • lillybellelillybelle Member Posts: 458 Pioneering
    As somebody who is about to go through an assessment next week because of uncontrolled epilepsy and a back injury caused because of a seizure.
    most definitely
    i can not cook, Iron, bath etc at all. I shower and dress with help from my daughter.
       So if you are in the same position as I am in which I’m sure you are,
    then you should easily have scored enough points.
    do you know how they have scored you enhanced mobility?
    do you have trouble walking

  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Very much depends on the nature of your epilepsy. Whether or not it's controlled is nothing to the point. The key issue is the extent of any warning and the extent you can make yourself safe if you do get a warning. That is then combined with evidence on frequency. 

    Someone who has fits every day but gets warnings and is able to place themselves safely may not score points. Someone who fits infrequently but gets no warning etc. will be much more likely to score. 
  • lillybellelillybelle Member Posts: 458 Pioneering
    I have no warning at all. It’s just like switching a light switch off.
    afterwards my memory is like a crashed computer .
    its horrible
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger

    Then you should be looking to score daily living points on activities 1 to 6 and mobility 1 and they should at least in part all be based on the safety aspect.


  • karl87karl87 Member Posts: 3 Listener
    By the sounds of these comments then I should apply to the upper tribunal about why I haven't got living allowance only scored 5 points needed 8. I dont ever no when a fit is gonna happen so I am a risk at all times weather thats cooking,washing to even sitting down surely I should have a case against it to get the daily living allowance aswell as mobility which they have gave me...
  • karl87karl87 Member Posts: 3 Listener
    edited February 2018
    As somebody who is about to go through an assessment next week because of uncontrolled epilepsy and a back injury caused because of a seizure.
    most definitely
    i can not cook, Iron, bath etc at all. I shower and dress with help from my daughter.
       So if you are in the same position as I am in which I’m sure you are,
    then you should easily have scored enough points.
    do you know how they have scored you enhanced mobility?
    do you have trouble walking

    All it says on the letter is " cannot follow the route of a familiar journey without another person, assistance dog or an orientation aid" which scored 12 points on it's own and no I don't have trouble walking inless I've had a fit. Maybe it the risks they have looked at there an not on my daily living allowance which they should have i.e. cooking washing an alot of other things too..
  • Paul7210Paul7210 Member Posts: 40 Courageous
    edited March 2018
    Hi @karl87, epilepsy is one of those conditions that vary a great deal from person to person, to get daily living you must require care/support at least 50% of the time, (if you work) you can claim this benefit in or out of work but it will make a difference to the points and how they score you. Mobility is treated differently where they tend to assume you need supervision at all times out of the house due to higher risks i.e falling into the road of oncoming traffic, the supervision rules were changed recently taking into account especially those with uncontrolled epilepsy and those with similar problems, epilepsy action campaigned hard for these changes. My wife has seizures or clusters of seizures most days and requires 24 hour care some of which is provided by adult social care, we had to have two assessments in the home but did get both elements, however she didn't get the points I thought she would get ! how frequent are your seizures @karl87 ?
  • lillybellelillybelle Member Posts: 458 Pioneering
    I have uncontrolled epilepsy. Daily petit mall that include me being conscious but no controll of sudden movements,
    absencess at least 6 an hour where I loose complete awareness. Don’t see or hear for 3-4 sec.
    i have suffered grandmall. Again no warning although these seem to be controlled.
    i have scored 6 for daily living on my report and 12 mobility.
    final decision not made yet. Will be telephoning Monday to speak to a decision maker as I think it is wrong
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Uncontrolled isn’t necessarily the main issue. Warnings and the ability to alert others or put yourself in a safe place is the big points scorer under PIP. 
  • lillybellelillybelle Member Posts: 458 Pioneering
    I have no warnings at all so will make this an issue.
    luckily I have a disability solutions centre that deal with pip appeals etc 
    but the more input the better.
    i certainly will not accept this decision without a fight.
    people with epilepsy are not treated appropriately because it is a hidden condition

  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    I don’t think you can single out any impairment and say they’re especially badly treated under PIP. Almost all conditions are variable and almost all have an invisible impact. There’s nothing unique there. People are generally treated poorly because they don’t understand enough about how the claim and decision making process works and what is needed evidence wise. 
  • Paul7210Paul7210 Member Posts: 40 Courageous
    edited March 2018
    I agree with Mike, as many people are indeed treated poorly, in your situation @lillybelle you would be entitled to a care needs assessment by your local council, this really helps with evidence which is what we did and they may even offer a care package to suite your needs, my wife has severe epilepsy and due to this has impaired memory and is unable to deal with her own affairs and has a poor understanding of things, be aware if you speak to the DWP's especially on a regular basis they will make a note that you can handle your own affairs and you could loose points, I know it might sound daft but this is exactly how our friend was judged, at the assessment centre they even watch you getting out the car they will also write to your neurologist or specialist nurse for updated information on your treatment and the likely hood of you getting better. Good luck 
  • lillybellelillybelle Member Posts: 458 Pioneering
    Thanks for the advice,
    i too have memory problems, again not given any points for. Even though my husband sorts all finances arc as I can’t remember PIN numbers etc.
    with absences so often my short term memory is terrible. Also a medication side effect.
    i will be just pointing a couple of points out on the report.
    1) I was awarded 4 points as I need assistance cooking a meal.
    i do not cook at all for safety reasons.
    2) the assessor gave me 2 points as my daughter helps me wash the lower half of my body( back injury) however I also said that she also helps with dressing the lower part of body ie- putting tights on.
    the report says I can do this without problem
    so this does not make sense
  • lillybellelillybelle Member Posts: 458 Pioneering
    The DWP have a letter from Gp saying that my condition affects my daily life.
    my next neurologist app is in June.
    i will only be contacting them once.
    after the final decision is made the centre will be dealing with the rest on my behalf
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    If the letter from the GP says that then it’s unlilely to carry much weight as PIP is very specific.
  • lillybellelillybelle Member Posts: 458 Pioneering
    Why do you think this?
    the letter just says I have uncontrolled epilepsy etc. The medication, my back injury and I am seeing a neurologist in June. Have daily problems and if they need more info to contact them.
    like you said I have absolutely no warning of a seizure and I have them on a daily basis.
    surely that would be enough for them to realise through safety reasons alone I cannot cook, bath etc
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Yes, so the letter confirms a diagnosis they already had; confirms meds. you’ll have told them about anyway and doesn’t describe your daily living or mobility issues because, let’s face it, a GP will only know of those what you tell them. GP knows damn well that DWP will not contact them but put that bit in to sound committed to you as a patient. Basically it’s a letter which adds zero to your case. I have said repeatedly on this site that if you rely on so-called medical evidence then your claim will likely fall short of what you want. A GP will, as above, most likely only repeat things not in dispute that you’ve said already. Evidence not directed specifically to daily living and mobility needs is of little use. Your GP could repeat everything you tell them re: those but then that’s not then medical evidence in any sense. It’s repetition and no more. Your carer or next door neighbour could do the same and it would most likely have more weight as evidence. 

    The lack of warning is key to scoring points here but DWP are not obliged to “realise” anything. They can only go on what you tell them. So, to me as a WRO it might be obvious that you would need another person around when you bathe. That would be my starting point though. The DWP can’t assume anything. You need to spell it out. You need to explain how often you bathe; who is around; why you need them; where they actually are when you bathe; and most importantly, you need to give at least one example for every activity of what has happened when someone has not been around. Again, full, graphic detail and no skimping. Anything less will almost always fall short. If there have not been any incidents then you have a harder task and you’d need to explain the need for assistance for something that’s never happened. Who suggested it for example.

    The answer of course is that such incidents are potentially life threatening and so would only have to happen once. Bottom line though is that if you don’t say that explicitly they simply will not assume it. You’re the claimant. The burden of proof falls squarely on you and you alone.
  • lillybellelillybelle Member Posts: 458 Pioneering
    So is this what I will have to do in the MR procedure after my result letter comes.
    i need to go into detail why I can’t do the actions and give them an in-depth reason why including the past incidents
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Yes, that’s what should happen on the claim pack but that’s what you now need to do on the MR. Exactly that.
  • lillybellelillybelle Member Posts: 458 Pioneering
    Sorry what do you mean by the “claim pack”?
    is this when I first made the claim?
    my claim form was filled in by Disability solutions charity and mostly everything was stated that I could not do things due to safety reasons or to an acceptable standard in a reasonable time scale.
    the person who filled it in also goes to tribunerals etc.
    i have just contacted them again after looking at this report.
    Today I am going to sit and read all of the report and make notes.
    would it help if I rang DWP and asked to speak to a decision maker about my report before a decision is made?

  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Yes. Claim pack - claim form.

    Would it help to talk to a DWP decision maker? No. Plus you most likely wouldn’t get through to one. Every time a DM is on the phone to a claimant then they’re not making decisions. 
  • gemlougemlou Member Posts: 8 Listener
    Hi can someone help me, dwp are doing a second reconsider for me and I don't understand why also if they do give me daily living would I get my esa money back to normal and would esa give me backdated money which was cut because I was denied pip thanks
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