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0 Points for my various conditions including uncontrolled seizures

brucie25 Member Posts: 9 Listener
edited September 2017 in PIP, DLA, and AA

I am aghast after receiving my PIP rejection letter this morning mainly because I have been awarded 0 points for every question even though my partner cares for me when I have my seizures and afterwards, cooks everything for me, supervises me when I have a bath or shower, tells me when I need to take my meds because my memory is poor down to meds my neurologist tells me which equates to 50mg of lacosomide and 1800mg epilim per day (apparently that's a low standard dose in the rejection letter). I am also driven everywhere because I have social anxiety which triggers seizures and this includes to a hospital 30 miles away on a fortnightly basis to see a neuropsychologist because I have NEAD as well as Temporal Lobe Epilepsy. 

My Neurologist written a letter (which I included in the PIP application) after watching many videos my partner had been recording at his request and in the letter he written I throw things, hit out and and get undressed during my seizures which makes me a risk to myself and others obviously. I didn't ask him to say that as I have never watched these videos.

The medical assessor even watched some of these videos including a recent one where I was in the bath and had a seizure. I told her I have recently had a seizure in front of 2 nurses whilst waiting for my Neuropsychologist. Even this week whilst having to go to my Doctors to sign up for online services I have a had a seizure at reception only to come around with my GP holding my hand. My GP is writing to my Neurologist and has increased my Dose to 2000mg of Epilim a day. My partner was in the car with our 3 year old daughter waiting for me when this seizure occurred and the reception staff brought me out to her car.

I have these seizures 2 - 3 times a week and afterwards I can be out of it for at least a day. They are getting more frequent, more prolonged and I feel a lot worse than I ever done after a seizure recently. I have uncontrolled seizures for over 15 years.

I also have a Osteochondrial lesion on my left talus bone and Ashtma which I made them aware of which affects my mobility.

I really thought I had a chance because I had clearly demonstrated I obviously couldn't get to my treatment on my own (Neuropsychologist) and was stated as a risk by my Neurologist after he watched many videos of me having seizures. How can they say I don't need supervision whilst bathing after watching a video of me having a seizure in the bath?

Was I really that wrong to believe I had a chance of getting PIP? I thought it was about the risk involved but DWP still state majority of the days rule in their rejection letter.

Any input appreciated before I decide what to do.


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @brucie25 welcome to the community - I am so sorry to hear about your experience with PIP.

    We have lots of information about appealing the PIP decision, and around 60% of people who appeal the decision get it overturned.

    You need to start the process by applying for a Mandatory Reconsideration, you have a month to do this so you need to do it sooner rather than later. 

    This information is from the CAB website.

    The best way to apply for a reconsideration is to write a letter to the DWP explaining why you disagree with the decision. You need to make sure that the DWP receives the letter within 1 month of the decision. The decision date is on your letter - it isn’t the date you received it.
    Your decision letter will say that you can call the DWP to ask for a reconsideration. You can do this, but it is best to have everything in writing. If you’d prefer to call, make sure you follow up the call with a letter.
    What you need to say
    You need to give specific reasons why you disagree with the decision. Use your decision letter, statement of reasons and medical assessment report to make a note of each of the statements you disagree with and why. Give facts, examples and medical evidence (if available) to support what you’re saying.
    It's important to make sure you've got the right evidence. You can use our guide to how the DWP makes a decision to help you.
    The DWP can look at your whole award again if you seek a mandatory reconsideration. You should consider whether you risk losing your current award - for example, if you've got evidence to support a daily living component but might lose your mobility award because you can now move about better.

    If this doesnt go in your favour, then you can appeal to a tribunal, you can read more about this here.

    We also have some videos that might be useful for you to watch about appealing decisions.

    Senior online community officer
  • brucie25
    brucie25 Member Posts: 9 Listener
    Thanks Sam, I have actually started my mandatory reconsideration letter and will take your information on board. My partner is picking up a copy of a letter written by my GP to my Neurologist because I had a seizure in front of him in the surgery only last week so I'm going to attach that also to my MR letter which I hope will help DWP get a better idea of the daily problems I face currently.

    I was really just wondering about the 50% rule as that is what they have scored me on but I explained to them that the seizures would be more than 2 or 3 a week if I was outside more especially alone and also I thought that PIP questions would be scored on the risk involved in the activity now rather than if it occurs 50% of the time or more, does anybody have information regarding that?
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering
    Hello brucie25

    The 50% rule should be applied to the risk of danger occurring and not purely the actual frequency of seizures. Given that your seizures are unpredictable, it is very strongly arguable that you meet this criteria.  The DWP should also be considering the likelihood of danger occurring. Again, in your case this is not a mere theoretical risk but an ongoing real danger, with documented evidence from medical professionals.  

    Given your post, it seems clear that you can argue that for example, you are unable to cook due to the risk of falling onto a lighted cooker, could drop/spill hot food, needs supervision in a bath to ensure that you do not go under water.  Are you at risk of choking if your were to have a seizure whilst eating? If so supervision again is needed when eating. This of course, is on top of any other health problems that you have. 

    It maybe worth pointing out that your seizures are unpredictable, and thus the risk of danger is present all the time. Then, re-iterate the actual harm and injuries you have sustained due to the seizures, pointing out danger is real and on-going. 

    Good luck, and please keep us informed about what happens on your Mandatory reconsideration. 


    The Benefits Training Co:
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  • brucie25
    brucie25 Member Posts: 9 Listener
    Hi Maria,

    Thanks for your comments which confirm what I had understood about PIP and uncontrolled seizures and the risk they present 100% of the time.

    I will have another read through my MR letter and change if necessary but I think it includes all the points you mention already because obviously after collapsing and having seizures countless times over the years I have made adjustments in my life to manage this risk daily and so has my Partner.    

    I wouldn't normally hold much hope for MR stage (been here with ESA) but the fact my GP has witnessed me have a seizure only last week and written a letter to my Neurologist stating this and asking for an appointment asap for me gives me small hope it won't take months of stress to get the decision overturned. I will keep the thread informed how it turns out.

    Thanks again.
  • TheEpilepticMan
    TheEpilepticMan Member Posts: 1 Listener

    Dear Brucie25,

    I only hope you've come across the correct decision made in court regarding PIP claims earlier this week. They've now concluded that the Government have set up PIP's incorrectly and that they're now due to change the way people are assessed. If you're still struggling to gain any PIP income, then it should mean that you're back on course to be receiving it.

    The fact is that PIP claims need to be assessed with one fact in mind - it's not about likely potential harm is, it's about how serious it could be if it happens.

    The reason you didn't get your PIP was that they saw you as somebody who was not so likely to be affected by your epilepsy because you're often supervised by your partner. 

    However, that wasn't the right of them - they should have considered how serious it could be if you had a seizure without your partner. From what you mentioned in September, I assume you're currently unable to work, and that's why you have the right to be paid.

    The Conservative Party have made some daft errors towards people with disabilities, and I'm not a big fan...

    All the best to you mate.


  • cathie
    cathie Member Posts: 143 Courageous
    How's this not sent to test my mental health strength  appointment cancele told on 18th not to attend on 17th another appointment made for 31st also  an cancaled.pip independent assessment set up  found out to late .. only received letter today asking me to explain  why I didn't attend on 31st answer with good enough reason by the eightth if not benefits  will be stopped without further notice   r they real on drugs special  needs not sure .. so again  the cost of  an expensive  phone call for hour or more out of my day not admin or on the pay roll someone had wages  paid for that roll .. but there mistake but at my peearl  if I don't contact and correct faulty admin staff s mistake  oh what a fair and just world iv found my self part of  matrix makes more sense ..have to laugh  stop the madness taking hold ...COME ON REALLY... 
    Only me .. cathie..
  • brucie25
    brucie25 Member Posts: 9 Listener
    TheEpilepticMan I just want to thank you for making me aware of this weeks news about PIP and your kind post, I totally missed it until I read your post tonight.

    I'm still waiting on MR so will wait and see what they decide given my letter and the recent letter from my GP to my Neurologist asking for an appointment for me straight away.

    I will keep the thread informed of the decision.

  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    @brucie25 I bow to the superior knowledge in the advice you've already been given but just want to say that if there's anything you've forgotten to say in your MR letter or if at any time you're not getting the correct decision you can ring to book a call back from a Decision Maker to discuss your case. You should be given a 48 hour period during which the call to you will be made. There is no way you should not have been awarded PIP. Have you got your assessor's report? If not ring DWP and ask for it to be sent to you, you will then see where things went wrong. 
  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    Just wishing you good luck Brucie, my wife has always had severe epilepsy with seizures most days. It might be worth considering a Care Needs assessment from your local council? that's what we did 12 years ago and to be honest they've been really helpful and supported us through the changeover from DLA to PIP, anyway if I can help just ask, hope you have a seizure free Christmas.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @brucie25 I am sending you a message of support and best wishes.  Reading what you said I do not understand this.  This is becoming ridiculous and I feel for you what you are going through.  When are this Government going to stop this mistreatment of our community.  Especially these assessments and the unnecessary harm that they are causing.  It is becoming too much.  Another heart wrenching story.  I have been myself reassessed so many times it is becoming tiresome.  I hope and pray you can get through this and I wish you to know you have my support. Take care and pleased to meet you.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Rosiesmum
    Rosiesmum Member Posts: 75 Connected

    Hi @brucie25 we're in the same boat I wish you the very best of luck with sorting it out and thankyou so much to @TheEpilepticMan that is very helpful to me too!

  • brucie25
    brucie25 Member Posts: 9 Listener
    Hi, thanks for your comments everyone, I just wanted to update this thread on where I am up to in the process. After writing a letter for my MR explaining the risks I face everyday and how my partner helps me with these risks (constant supervision, cooking, cleaning, managing meds) I scored 12 points for mobility and 6 points (supervision when cooking and bathing) for daily living. It might of helped that I also attached a letter my GP had written to my Neurologist because I had a seizure whilst talking to my GP receptionist just after scoring 0 points in fact. I am now waiting on a tribunal hearing and when I stated how many more activities I should get points for I think it was more than 10 extra points because of the kind of things I do during and after seizures. I would have been content with the decision but it means my partner will now be sent out to work and I will be left to care for our daughter which is something I don't do in case I have a seizure. I have received my notes from DWP which I think is their response to the tribunal so I am just waiting now for a date. 
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering

    Thanks for updating us. I agree that in the circumstances, it's definitely worth going on to tribunal to try to get the daily living component. You should focus on the 10 extra points you've identified in the other daily living activities - any activity where you cannot do it safely, or can only do so with supervision, is likely to score points.

    As Mary has explained, the risk is effectively there all the time, and is something it wouldn't be reasonable to ignore. It doesn't mean you have to be more likely than not to have a seizure, just that it is something which is sufficiently likely to happen that you need someone with you, or for some activities, may never be able to make them safe.

    The bundle you've got from the DWP is almost certainly their response. You can (but don't have to) write a submission setting out what points you think you should get and why, and inviting the tribunal to consider these. However, if you've already done this in your appeal form, it really isn't essential. Many people attend tribunals without a submission and are successful.

    Another thing to consider is whether you look for advice locally to help you write one, or even to represent you. However, in your case, again, I'd say this isn't essential. 

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • Sam78
    Sam78 Member Posts: 6 Listener
    Hi there my name is Sam and I have many seizures without prior warning like you my life is very difficult requiring constant looking after I too was rejected from pip and have asked for a mandatory redecision but I’m more than 99% positive that I will be heading to the appeal panel as this will be my third time over the years I agree with the other comments mentioned it’s not about what you can do it’s about the fact that if we do then we are putting ourselves in extreme danger which is redicolous if you consider there reasoning I too scored 0 points and I even had a seizure in front of the lady that came to my home for the medical assessment and whilst I was unconscious my mum told me that she couldn’t get out of the house fast enough I was really appalled at this the whole pip claim from start to finish is a total nightmare from my point of view but I will keep fighting as you should do too we are both worth more than this and frankly deserve better good luck with your claim and I hope you get everything that you deserve best wishes Sam x 


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