Uncontrolled epilepsy

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hello i have epliepsy and i tried to claim pip (personal independence payment) as dla as stopped i put in for it but i was turned down i have upto 16 fits a week could be more i was rushed to hospital and was in resus due to i had 75 fits in less than 1 hour it was just 1 after another i suffer bad depression and i also self harm due to my depression which i have councilling for but doesnt help in the slightest i cant help the way i feel and i just need to let some steam out by hurting myself which i really dont want to do but thats my way of getting relief i am also very hot headed i can just flip without warning 1 minute im ok the next im like the devil thats about to explode i have been involved in a road traffic accident which led to 2 cars crashing due to my fits and 1 car swerved into me and i broke my leg and fractured my neck i have also fallen downstairs also my medication doesnt work at all but im not allowed to deal with my meds as i would just take the lot without a fought in the world how can they possibly turn me down also had a tribunal and was turned down again im scared to leave the house also i lost a baby last year a baby girl due to having a fit and falling down the stairs and was rushed to hospital with bad pain in my stomach which then i found out i had lost the 1 thing that could possibly get me through life but that was taken away from me what can people reconmend i should do xxxx

1 like, 18 replies

Report

18 Replies

  • Posted

     If you've been to tribunal for your PIP appeal and been turned down, there's not an awful lot more you can do on your own.  I think you need to enlist the help of your MP.  What you need to do is have a look at the way in which you filled in your PIP application form and also study the DWP decision letter to get to the bottom of why you were turned down.  The problem people have with PIP is that they don't realise that simply having a certain condition is not enough in itself to qualify you for PIP.  It is the effects of that condition on the activities that are assessed.  You need to consider how your condition affects things like your ability to wash and dress yourself, cook a meal, manage your medication, how you manage toilet or Incontinence needs.  In addition does it have an effect on how you interact with other people - do you tend not to socialise or need support to do so because of your condition.  How does it affect your mobility ?  Can you walk unaided, if so, how far ?  In addition, your safety needs to be considered and people who need supervision to be able to carry out any of these activities should qualify. You also need to be able to do them to an acceptable standard without pain or discomfort, as many times as needed throughout the day.  

    If you feel that any of this applies to you,have a look at the way in which you have filled in the application form, and the subsequent decision, because if you haven't made your needs clear in these areas, this is probably why you'be been turned down.  It's not enough to simply list your disabilities and symptoms in a PIP application - you need to study each question carefully and say exactly how your condition affects your ability to do each activity.  

    What I would advise is that when you have a clear idea of where you've gone wrong in the application process, you make an appointment to see your MP and explain the situation. You don't say how long ago you applied for PIP but if it's less than a year ago you are unlikely to be allowed to make another claim unless your condition has changed or you have another condition to report, so you need some help to see if anything can be done to appeal to a higher tribunal in regard to your original claim. Usually you can only appeal to a higher, tier 2  tribunal if there is a legal problem with the original decision, so you can't do this on your own - your MP is the starting point, and I would also get some advice from citizens advice or a benefit adviser.  I would also advise seeing your GP to explain the situation and get some help from him or her in obtaining proper, clear medical evidence that sets out your condition and needs.  Please don't hesitate to ask me if you need anything else in the way of advice. PIP is a notoriously difficult benefit to claim - especially for people with mental health issues and conditions like epilepsy, and it sounds as though things have gone badly wrong for you.

    Report
  • Posted

    Hi Jodie, I'm soz to hear about your awful experience but have you appealed yet? I know many people who have won their case on appeal. Good luck & let us know how you get on... 😀

    Thomas

    Report
  • Posted

    Sorry, but can I ask, why you were driving when you have seizures, it's just my daughter also suffers with epilepsy and everytime she has one she then gets put back 2 years of not being able to drive, she doesn't drive anyway but wants to but the doctors have told her oisn't allowed to now cos she has had more. and you saying you have up to 16 a day they wouldn't allow you to drive. I take it you have suffered with epilepsy for some years? my daughter was turned down for PIP after getting DLA since she was 5, we even went to the appeal and she only got awarded an extra 3 that was on top of the 2 Points that the DWP gave her as she isnt allowed to stand and cook. the judge awards the extra points for her medication as supervision is needed and also needing surpervision in the bath.

    Michelle

    Report
    • Posted

      Why did your daughter only score 2 points on the cooking test ? With epilepsy she would need to be supervised in the kitchen, scoring at least four points.  If washing and bathing requires supervision there are another three points, plus the three for medication supervision. That is sufficient for standard rate care at £57 a week.  Get your MP involved to find out why she didn't score the points she was entitled to.  I can tell you an MP investigation can make a big difference.

      Report
    • Posted

      Hello michelle58585 i dont drive i think u have misunderstood or i have made u confused one of them but i dont drive i had a hospital appointment i had to attend and i had seizers and was hit by a car which made another 2 cars crash but i dont drive
      Report
    • Posted

      Hi Pam, it may well be the case that she didn’t deal with that argument either on her claim form or at the Tribunal. If you don’t put your case to them for the relevant descriptors to apply isn’t it possible that the Tribunal would not do the work for her?

      Does a Tribunal look to see what points she might get even if she never claimed those points as relevant to her needs?

      Report
    • Posted

      From your description I would have thought your daughter should have scored 8 points and awarded standard rate care. From what you say she qualifies in three areas. Supervision with washing and bathing is three points, supervision with cooking is another three points and help with medication is two points - that's right in total and enough for standard rate.

      Report
    • Posted

      The tribunal look at the whole award - both mobility and care - which is why you need to be really sure you have a case before you go to tribunal because you could end up with less than when you started. They cannot physically examine you and I don't think they can call for further evidence. The idea is that you thoroughly prepare your case, are very clear about what you are disputing, and as far as possible provide any evidence to support your case. I have to state again that a claim for PIP will only consider the effect of your disability on the activities assessed and not the disability itself. You therefore have to have a very clear explanation for the tribunal as to why you disagree with the DWPs' assessment of your capabilities.

      I am dealing with a lady at the moment who has spina bifida and she provided clear and specific medical evidence to support a reconsideration request. The DWP ignored the evidence and rejected the claim. She now has to to to tribunal with no guarantee that they will accept it. It's a very difficult benefit to claim and even more difficult to challenge so I would strongly recommend getting professional help from an appropriate advocacy agency before going ahead.

      Report
    • Posted

      Hi Pam, I agree entirely. Only ever been to one Tribunal and that was for Council Tax Benefit, I know little of how they work for ESA or PIP.

      What you are saying about how to approach the hearing is absolutely correct. The case I had was a technical issue about how should the Council treat the back dated monies for someone of state pension age. Should it affect only the week in which it was received or spread back over the period of which it related to.

      Because of the issue, I had to do a lot of reading to make sure my argument stood up to scrutiny. My submission was lengthy and contained references to the relevant case law.

      Given that I won in what was a half day sitting, it is vital that you do your homework before you get to court.

      The case you are handling at the moment does go to prove the point that I made earlier about straight forward conditions (such as Arthritis) and the needs arising seem to fit nicely with the descriptors. It is when we get to the more difficult, complex and more serious of diseases including most cancers that a PIP award is difficult to get. The case of the person suffering from life limiting Motor Neurone disease is also a prime example – gaining enough points for even Standard rate of Care or Mobility was impossible.

      I think that this is where I fit in – too many unusual, complex and difficult conditions for an assessor to get their head round them In fact on that particular point in in one report it stated that all needs claimed in respect of the Chronic Pancreatitis where unlikely to be the case in view of the fact that that particular disease is no different than constipation! I wish!!

      Report
    • Posted

      Ok hun, misunderstamding then. hope all goes well for you either way, my daughter's got stopped, the appeal gave her 3 extra points ontop of the 2 the DWP gave her.  good luck anyway.

      Michelle

      Report
    • Posted

      Hi Pamsorry only just seen this in my emails, Basically the DWP only awarded her 2 points for not being able to cook  unsupervised. the appeal awarded her an extra 3 points and that was 2 for supervision in the bath and 1 for supervision with her medication. This was back in July so not sure if anything has changed since then, it's all been a muddle, she now works as had to as it was a big drop in finances to 0. and my other daughter who has learning difficulties and did work is now on ESA due to her medical conditions due to an upcoming operation she needs to have so all that changed too.

      Michelle

      Report
    • Posted

      Also I forgot to add the information that got sent to the courts for the tribunel, said at the bottom from the DWP, we opose that you dismiss this claim, mt housing officer said it looked like it was an open and shut case, but obv the tribunel still wanted to hear our thoughts on it all.

      Michelle

      Report
    • Posted

      The DWP get copies of everything you submit to the tribunal and they are required to give reasons why they do not think the tribunal should overturn the decision - this is standard practice in every case.  What I don't understand is why so few points were awarded considering the severity of her condition and the need for supervision.  The DWP AND the tribunal are supposed to consider safety aspects and with this level of uncontrolled fits, your daughter should have scored 3, if not 4 points for being unable to cook a meal unsupervised, another three points for needing supervision whilst bathing or showering, and depending on cognitive function, 2 further points for supervision with her medication if she needs help in this area.  I really would see your MP and find out why her safety has been ignored in the assessment.

      Report
    • Posted

      Hi Pam, Given that this case has now been to a Tribunal which happened many months ago, I don’t think that an MP could now intervene and have it changed.

      Surely the time and place would have been at the Tribunal stage. I do suspect that the claimant did not make the case for the increased points and as such the Tribunal would be under no obligation to do the work for her to consider something that was never put before them.

      I do know that the DWP will not and neither will the assessor look into giving more points if the claimant did not make a case for those points on the claim form.

      I had this with my very first ESA claim (ESA50) back in September 2009. The form was confusing to me and I read it that I could only make a case for not being able to work based solely on what the GP had put on the sick note (Chronic Pancreatitis). When it came to the mental health section I wrote across it – ‘There are no mental health difficulties that relate to the condition herein being described’. The assessor then went on to say in their report that I had never and don’t currently have any mental health problems. This was a load of rubbish as I was under the care of the CMHT and had been since 1995. My DLA award was in part awarded because of the problems with mental health issues and I was in receipt of IIDB for mental health problems.

      As I didn’t make the case – the DWP were under no obligation to consider it even though I had sent in medical evidence and a full report from my Psychiatrist.

      Report
    • Posted

      I agree with most of what you say, but in my experience with a couple of cases where MP's were involved, he fact that the cases were out of time limit didn't factor in, as the MP's letters were treated as a complaint to the DWP on behalf of a constituent, after the event.  As such it's always worth a try.

      Report
    • Posted

      If that is the case then the MP should really intervene in my IIDB saga?

      As I have mentioned in another post, I had the usual face to face re-assessment for IIDB back in Feb 2004. Two weeks later saw me taken into hospital with Pancreatitis. Twice I was given only hours/days to live and even had a DNR instruction in my medical file. Eventually many months later I was discharged home to my wife’s care. Despite an assurance at the time given to my wife that Social Services were to be involved due to enduring mental health issues as well as the complications that Chronic Pancreatitis brought along to the party, nothing happened. It took my wife over 6 years of careful nursing, time spent under Section and daily visits to the Mental Health Day Service Unit to get me back on track. In this time she had handled everything even though she had no experience of finance or dealing with officialdom. Opening the mountain of post that she put to one side as she didn’t have a clue what to do with it I found the decision letter for the 2004 IIDB re-assessment. I started a campaign and with all of the evidence going back 7 years I proved that the decision was wrong (Nov 2011). The DWP revised the 2004 decision giving an award of what I previously had for the period 7th Feb 2004 to 6th Feb 2013. Payments started again in November 2011. The period 2004 to 2011 was outstanding. When I challenged the DWP over this they stated that whilst they agreed that the 2004 decision was woefully incorrect and that they had accordingly revised it, they could not pay me a penny of that money as no appeal was lodged within the 13 months of the original decision notice.  

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up