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PIP decision, epilepsy, zero points

u6nfx3u6nfx3 Member Posts: 1 Listener
Hello,

I have just received my PIP decision letter and have not been awarded PIP. I know that it can be challenging with epilepsy, but I wasn't expecting to score zero.

In general the response was "You said that that you can't do X unadided, I have decided that you can do X unaided".

I haven't had a tonic clonic in over a year which has been great, but I continue to have absence seizures every day. There are also elements of the response that don't line up with what I said or wrote
- "you said your medication was effective" > I'm still having absence seizures, and the medication has side effects
- "you are not disorientated after absence seizures" > I said that I lose my train of thought
- "you are fully aware [when having absence seizures'" > I am not, I lose conciousness

They seem to think that not speaking to a consultant in the last year means I'm OK - I can't make appointments unless they are emergencies due to COVID.

I also said that I cycle, but it's a risky activity. I can't drive. It's the only freedom I can get other than public transport, and it's one of the few things I actually enjoy.

With all of the injuries, time I have had to take sick leave last minute because I haven't slept well enough and might have had a seizure, the constant embarassment of absence seizures in public settings, the dental problems from injuries, not being able to drive, the risk of having a bath and shower, same with cooking, I would at least have expected a few points.

The letter makes it feel like the impact of my illness is meaningless to the assessor.

I have gone to great lengths to try to cope with my condition over the last 15 years. This means I have to put myself at risk to live like a normal person.
- it would be a lot safer to never cycle and to be accompanied when near train tracks
- it would be a lot safer if I didn't use the hob or knives, and was supervised when cooking or pouring boiling water
- it would be a lot safer if someone could be around when I shower in case I have a TC
- it would be a lot safer if there was someone who could hear when I have a TC at night

Any advice or support would be appreciated, I just feel a bit upset - and it's not about the money as much as it's about someone recognising that this has been a huge burden, and that trying to get on with it and live it is a bad thing.

Replies

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome 

    Sorry about your PIP decision 

    It us always hard when you get turned down and reading the comments 

    Dont forget it is just the assessors opinion based on what you said and not fact 

    If you want to appeal then put in MR the success rate isnt high but is a lot better at tribunal 
  • DuraDura Member Posts: 8 Listener
    Have a look at my post Epilepsy pip it takes you through the process of pip claim including tribunal.
    The fact you ride a bicycle and carry out all the daily tasks you mentioned,  with Epilepsy, would  in my opinion give the assessor the impression that Epilepsy was having little or no affect on your daily life, the very thing a pip award is awarded for.
    You said you have been injured when fitting it is wise to photograph the injuries and back up with hospital reports.
    My wife received a full depth burn to most of her hand whilst attempting to cook, the DWP said everyone who cooks can expect the odd scold or two, he had not even seen the photograph I sent with my application. This oversite went a long way to overturning the DWP at the tribunal.
    The fact you have to cook etc unsupervised should not deny your right to a pip award but it would be helpful to be able to proof you have been injured whilst doing so. 
    However the fact you ride a bicycle appears to me would affect many areas of a pip claim for mobility, my wife is accompanied at all times and yet we still had problems convincing the assessor regarding this fact.
    You are standing up to your illness, for which I commend you, however this will not win you points when claiming a pip.
    When you put in your MR, the next step before the tribunal, approach it from how you are after a fit, injuries in the past and how having to cope alone with all the risk this involves, affects you mental health.        
     
  • woodbinewoodbine Community Co-Production Group Posts: 4,522 Disability Gamechanger
    Epilepsy can be a difficult one re:PIP depends on how often you have seziures, if you get any warning, how effective meds are. As above the next step is an MR, see if you can get help from welfare rights with it, but chance of MR changing anything aren't high (around 17%) so you might want to be thinking about your appeal as well.
    https://www.google.com/search?q=epilepsy+action&rlz=1C5CHFA_enGB888GB888&oq=epilepsy+action&aqs=chrome..69i57j69i65l2.5244j0j7&sourceid=chrome&ie=UTF-8
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • QueenofdisabilitiesQueenofdisabilities Member Posts: 91 Connected
    edited March 18
    Hi how are you  feeling today?
    You honestly aren't alone!

    [Removed by moderator]
  • woodbinewoodbine Community Co-Production Group Posts: 4,522 Disability Gamechanger
    I am a person with epilepsy and I take the use of he word "epileptic" as a form of abuse, my epilepsy doesn't define who I am.
    As for not riding a bike, why not? we're not allowed to drive, do you want to go back to pre war days when we were locked up in "hospitals". The amount of ignorance and stigma is awful and your post @Queenofdisabilities has really upset me, you want to be treated with kid gloves by PIP assessors and yet think that because a person with epilepsy rides a bike that should stop the assessment and no award made?
    Utterly unbelievable in the year 2021, I don't think anything I have ever read on the internet has ever annoyed and upset me as much !
    You go on (and on) about your own assessment and yet you got enhanced care and standard mobility?
    Give me and @u6nfx3 a break why don't you?
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,002

    Scope community team

    Hello and a warm welcome to the community @u6nfx3
    I'm sorry I've had to remove a couple of comments from your thread that weren't relevant to your query or weren't appropriate, so it may seem some of the replies are a little disjointed. 

    u6nfx3 said:

     I just feel a bit upset - and it's not about the money as much as it's about someone recognising that this has been a huge burden, and that trying to get on with it and live it is a bad thing.
    I think this is a really common feeling and I've seen others say it feels like the difficulties they experience have just been brushed aside.

    Will you be challenging the decision? As @woodbine mentioned, the first step of this is to request a mandatory reconsideration. 

    Do you have a Welfare Rights or similar organisation in your area? It might be worth checking out Advice Local.
    Community Manager
    Scope
  • julie2419julie2419 Member Posts: 33 Connected
    edited March 19
    I have epilepsy since i was 18 and agree with you @u6nfx3 that its not about the money,i had a fall today and hurt myself on my back because i get no warnings that it's going to happen. Its difficult each day and with pip even though i said all this im appealing as they couldn't understand what its like for me on a daily basis. My MR, they wouldn't and couldn't understand and didn't change their mind,how difficult things are for me. 
  • woodbinewoodbine Community Co-Production Group Posts: 4,522 Disability Gamechanger
    Hi @julie2419 hope you are ok after your fall? 
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • julie2419julie2419 Member Posts: 33 Connected
    Just resting as its paining alot,but its not the first time,ive had a few falls this past week,i keep a diary. I just get no aura warning its going too happen. Thank you for asking. 
  • woodbinewoodbine Community Co-Production Group Posts: 4,522 Disability Gamechanger
    Yes i'm the same no warning at all.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • mikehughescqmikehughescq Member Posts: 6,637 Disability Gamechanger
    Going back to the OP the focus now needs to move away from the HCP report and onto anecdotal evidence. There's lots of detail in that post but that just illustrates the focus people wrongly put on the HCP report. Go back to your own evidence and ask a simple question? Can I x activity reliably? Now be brutally honest with yourself about whether your form really addressed each of those 4 issues for every activity or did you, as your post suggests, focus on it being epilepsy? If you can find no fault with your form give it to someone else. There are no perfect forms (not even mine :)) and a devils advocate is a valuable thing. Lack of a warning is a key thing here but allied to that so is explaining those incidents which have happened precisely because you have no warning and describing them in detail.

    Epilepsy is a tough ask for PIP and it is undoubtedly a condition which can be highlighted as being harder than it was for DLA but it is not impossible. The key thing to remember is that you will not score highly on any one activity. There is no magic bullet. Lots of 1 to 3 points scores can get you there though. See also Epilepsy. I'll emphasise again though. Forget the HCP report. Forget that it's epilepsy. Focus on how reliability is impacted. 

    Riding a bike is absolutely not an issue by the way. Abject and offensive nonsense to suggest otherwise but again it will depend on how well you explained it.

    I ride a bike and yet I'm registered sight-impaired. If that's all I say most people would struggle to reconcile those 2 things and that is fair enough. However, nowadays I only cycle off road because my vision precludes me from seeing accurately when I look over my right shoulder (essential for road cycling). I almost always cycle with another person. I choose routes where people or vehicles or animals will not come across my path unexpectedly (only at crossing points). I have been hospitalised at least once in the middle of cycling because of a severe loss of blood pressure etc., which was essentially heat stroke in consequence of my albinism and... someone would need to explain to me exactly how this would impact any of the daily living or mobility activities. The answer of course is that it doesn't!
  • julie2419julie2419 Member Posts: 33 Connected
    @woodbine,im glad i came onto this site as its soo difficult too talk too other people who dont understand what it is like. Im soo glad i can open up on here too people who have the same problems. Thank you. 
  • DuraDura Member Posts: 8 Listener

    Mike

    I would say that riding a bicycle when you look at Mobility Activities section – planning and following journeys and moving around, would result in a 0 points award for both. I am of course assuming that if you can ride a bike for some miles you can be expected to be able to walk unaided for more than 200m.

    Planning and following a route, riding a bike would give the impression the rider could manage both

    again resulting in 0 points

    Which appears to be the opinion of the DWP.

    If my wife suggested taking up riding any form of vehicle on the road, when at any point without any warning, she is unconscious, I would advise her not to bother. That is why the DVLA remove licences. This is of course not a judgment of the person who started this conversation.


  • mikehughescqmikehughescq Member Posts: 6,637 Disability Gamechanger
    @Dura the DWP perspective on it is ultimately irrelevant. Get it to a tribunal and there is only one outcome if presented with sufficient detail.

    There have been multiple sensible discussions of this over the years. Most recent I can find is here and it makes the key points that whilst there may be some similar usage of muscles etc. the use of a bike halves the weight on same and on that alone can't be equated to, for example, walking. That aside it's important to remember that for mobility the tests are not whether you can or can't do something. They're about whether you can reliably do something and this is a very different thing. Even if you could ride a bike for miles that is not the question. The question is whether you can do so reliably, repeatedly, safely or in a reasonable time. 

    As regards moving around I think there's an arguable case, as per the Rightsnet thread, that a bicycle would also be classed as an aid which further opens up the points options. 

    As regards planning and following a route there's simply no issue. Provided the use of a bicycle is properly explained it would have no detriment on the award of points at all. 

    If we go back to DLA I have clear recall of both case law on the point and a case I took off a staff member after they asserted they couldn't see how they could proceed with an adult DLA mobility claim for someone who struggled to walk 20m but could cycle for miles. Went to appeal but DLA mob at higher rate for life was achieved. Said person also now rightly gets PIP mobility at enhanced rate. 
  • calcotticalcotti Member Posts: 2,235 Pioneering
    mikehughescq said: The question is whether you can do so reliably, repeatedly, safely or in a reasonable time. 
    To which one should also add the majority of the time. Some people have bursts of energy but the majority of the time are much more restricted in what they can do, or simply want to do something because of the pleasure it gives them even though they know it will wipe them out for several days afterwards.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • mikehughescqmikehughescq Member Posts: 6,637 Disability Gamechanger
    edited March 19
    Indeed you should @calcotti

    Interesting to see the new PIP 2 has royally messed this up by reintroducing the concept of good days and bad days. I’d much rather have had bullet points in there which give claimants plain English versions of regs 4 and 7.
  • calcotticalcotti Member Posts: 2,235 Pioneering
    mikehughescq said:..concept of good days and bad days. 
    I carefully avoided using that phrase!
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • mikehughescqmikehughescq Member Posts: 6,637 Disability Gamechanger
    I bristle when I even read it. 
  • henhen Member Posts: 7 Listener
    I got s chance on both parts for epelpsy and this time no assessment and 10 year no review
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