DLA to PIP for an epilepsy sufferer. — Scope | Disability forum
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DLA to PIP for an epilepsy sufferer.

tastytom Member Posts: 18 Connected
Good evening, I’m hoping someone might be able to offer me some help and information regarding my current situation.
I was in receipt of DLA as I have uncontrollable epilepsy & can have between 6 and 10 full seizures per week ( I have absolutely no warnings prior to seizures occurring. )
I completed the PIP claim form & had a face to face interview in my actual home on 23/7/19
i requested a copy of the report which showed I had been awarded 2 points for preparing food, 2 points for washing and bathing and 12 points for planning and following journeys.
I am still awaiting the official decision letter but based on the info. within the report I shall be requesting a mandatory reconsideration and appealing thereafter.
The nurse who interviewed me didn’t seem to have much of a clue about epilepsy which was confirmed in much of the information she put in to her report.
Anyway, I’m rambling ( sorry ) My question is this, what more can I tell them that will hopefully qualify me for the daily living part of PIP? I spent so long completing the claim form as my epilepsy as well as my depression & social anxiety/phobia caused by my condition is so complex to explain fully in writing but the nurse who interviewed me seems to have disregarded much of it. 
Are mandatory reconsiderations ever successful? 
Sorry about this saga of a question but I feel like I’m at my wits end with all of this and the stress and worry only makes my condition even worse. 


  • wilko
    wilko Member Posts: 2,455 Disability Gamechanger
    Most MRs are left the same as the original awards and the claimant then has to take their case to a tribunal hearing where success rate is 70%+ . As your where moving from DLA to PIP the criteria for assessment is different and is focused on the PIP descriptors in your ability to preform them safely, repeatedly and in a timely manner for most of your daily living conditions.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    I would say Epilepsy is very much misunderstood... I’m fighting the DWP, however, I would say I have managed to get the DWP and Nurses to begin to understand Epilepsy and it’s complications....
  • saz11
    saz11 Member Posts: 121 Pioneering
    Hi @tastytom

    I too was in the same situation as you find yourself only i wasnt on DLA.

    My situation came about after a renewal assessment were i lost my daily living award.

    I submitted a MR by phone followed up with a letter which i got confirmed they had received and processed.

    I was only given a total of 6 points for daily living 
    I disputed the points awarded to me for cooking and preparing food... 2 points awarded but on previous award 4 points given.

    The reason i was only given 2 points was because it was decided i could cook a full in a microwave.

    At my assessment i was asked if i used a microwave to cook meals to which i replied no.

    Anyway i detailed everything in my letter as to why i cannot carry this activity out safely and  advised of previous incidents were i have been injured.

    I waited a total of 10 weeks for my MR decision and i am happy to say i was successful.

    Hopefully you will get the decision  you want and  wont have to go through MR or Tribunal 

    If i can help you in any way please let me know.

  • tastytom
    tastytom Member Posts: 18 Connected
    Hello Saz11

    Thanks so much for your reply.
    I was advised by a local citizens advice officer who specialises in PIP that in her experience anyone with uncontrolled epilepsy tends to be awards the exact same points. 1C 4C and 11F ( the exact points that I myself received. )
    Shed advised that it was virtually impossible to be awarded any further points to qualify for the daily living award.
    I don’t know what more I can do as I have detailed every single aspect of my life as an epileptic and how difficult it is and how I struggle day to day with tasks that the vast majority take for granted.
    When I advised the citizens advice officer that I still intended to submit a mandatory reconsideration request she most certainly didn’t give me much hope of a positive outcome.
  • saz11
    saz11 Member Posts: 121 Pioneering
    Hi @tastytom

    At my assessment i too felt i had advised them of my daily needs and capabilities. As mine was a renewal assessment i thought it would be straight forward  My original award was till Jan 2020 but after this assessment it stopped on the 20th May, let me tell you that was a shock to the system as i thought because i had been awarded till Jan 2020 that my payments would continue till then. Trust me i will prepare well in advance before the next review.

    As to what cab advised i can only give you my personal experience and as i said i thought it would have been straight forward but i had to submit MR. 
    I took my time with my letter, kept calm and polite and stuck strictly to how my epilepsy affects me. Obviously this is different for each individual. 

    You can only be honest but i believe writing it all down helped in giving them a better understanding of the difficulties i face daily and also helped them in scoring my capabilities.
    Unfortunately this is another thing you have no control over but please try and stay positive and keep smiling. I am always hear if you need a chat. And keep in mind my successful outcome.....it does happen.

    P.s. This was the second MR i had gone through and won ?

  • saz11
    saz11 Member Posts: 121 Pioneering

    Sorry i meant to ask have you had an official decision yet or are you just going on the report.

    Either way i am of the opinio you dont ever give up hope.....i am proof it can be awarded and also a few other members recently have been too.

  • tastytom
    tastytom Member Posts: 18 Connected
    Hi @saz11

    No official decision letter as of yet, I had my face to face interview in my own home on 23/7/19 and since then the only letter I have received is one telling me that they now have all the required info. to make a decision on my claim.
    Prior to my face to face interview they had sent me a letter saying that they were looking at my claim and possible were going to be able to make a decision without seeing me in person ( which I found rather strange. ) but shortly afterwards I was notified of my face to face appointment date. ( I wonder if they were initially just going to turn me down altogether?? ) 
    I have been putting together my MR letter in anticipation of receiving the actual decision letter in an attempt to be as organised as possible and one small step ahead at least. ( my epilepsy means that I’m totally wiped out a lot of the time. ) I feel like I’m hitting my head off of a brick wall with all of this PIP trauma as trying to explain fully how my epilepsy affects my life 24/7 means that I’ve ended up with nearly a novel as my MR request letter! 
    It’s so difficult not to just give up and throw the towel in altogether as I feel I’m fighting a losing battle, I mean how can they simply assume I can safely use a microwave to cook my food in when I dare not venture near one as I’ve had so many seizures in the kitchen that have involved burning myself on boiling hot foodstuff. But they say that makes no difference as I haven’t been at A&E with these injuries...same goes for managing my medications, they said I manage fine even although I rely on someone prompting & often actually giving me my meds into my mouth especially if I’ve had a seizure and am totally out of it afterwards. 
    Anyway, I’m sorry for moaning on and on, it’s just good to “talk” to someone like yourself who has been there. 
    My one wish would be that I could have my health and be “normal” I hate being me, I hate being epileptic and I hate all of the depression, anxiety & panic attacks associated with my condition....life is hard enough without having to fight for benefits. 
    Thanks ever so much for listening, I truly appreciate your help and encouragement.  
  • skeg1960
    skeg1960 Member Posts: 15 Connected
    hi I got 16 points for mobility and 8 pints for care I did not need mr  and was given this straight away. nurse was vey nice and I told her I used a microwave. I think its just the luck of the draw as to who does your assessment .good  luck
  • skeg1960
    skeg1960 Member Posts: 15 Connected
    do you use a dosette  box
  • tastytom
    tastytom Member Posts: 18 Connected
    Hello @skeg1960
    Thanks for your reply.
    I have used dosette boxes off and on in the past but they really didn’t work for me,does using one make any difference to PIP?  I rely on my partner/carer completely monitoring and administering my meds. After a seizure I’m completely out of it so depend on them making sure I take the correct meds at the right time...if it were left to me I’d be in no fit state to take my meds when they were due.
    Its so good to hear of someone who got 8 points for daily living, do you mind me asking how the 8 points were made up? ( I only got 2 points for preparing food and 2 for washing/bathing. ) I’m at a loss as to what more I can tell them to justify my true situation & needs.
    It was a nurse who carried out my face to face interview in my own home, she was pleasant enough but I got the distinct impression that she wasn’t fully clued up on my condition as well as my needs.
    PIP seems to be a lottery for many, especially those with epilepsy in my experience and that is so wrong. 
    Thanks again.

  • saz11
    saz11 Member Posts: 121 Pioneering

    Hello you are very welcome.I totally understand your frustration.
    We do think alike i wish too my life could go back to normal epilepsy has changed my life is so many ways but i have learned to adapt and accept it which has taken me a long time but i am totally different person now. I feel everything revolves around epilepsy. 
    I worked all my life and held a very responsible position but eventually i had to accept i could no longer do the job to the best of my ability i.e. seizures  , memory loss , time off  etc. It has taken me a 
    I worked for the same company for 28 years so to leave was devastating. I live alone and dont have family so work was kind of my life.
    I also received notification from DWP to say they were looking at my claim and if they needed any more info they would be in touch then some weeks later i got a appointment for F2F so i wouldn't read to much into that. 
    As you say you have told them everything and all is not lost yet remember that. 

    Just to point out i kept my letter short ,  polite and kept to the point as i believe this is what is preferred by DWP.

    Keep smiling ?

  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    edited September 2019
    @tastytom - after my experience I have concluded that getting PIP is easier if you are good at filling out forms. A lot of people who aren't as skilled in this don't get PIP which I find very sad...

    The answer is to play them at their own game.

    Check the guidance that the DWP use so that you know exactly what the different descriptor are and, importantly, what they aren't...for example you might assume that 'washing and bathing' includes getting dried. But is doesn't.

    Armed with this knowledge then see which of the daily tasks you have difficulty with. Can you not do them at all, or do you need aids, or assistance?

    Give some examples. Have you been injured when using the microwave? How often? How badly? What do you do to cook meals?

    Do this for each one that applies to you.

    Don't write War and Peace - keep it simple and concise. If you use several examples try to make sure that they are different in some way 'eg' problems chopping veg, reading a recipe, problems cooking because of fatigue.

    When you've finished leave it a couple of days. Then cut out all of the bits that you've put in but don't really add anything...

    Others disagree I know but if it's shorter and concise then it's easier for the assessor/ decision maker to find what they need without searching through pages of waffle...

    Good luck!

  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    Hi Thomas,
                       how did you go on? my wife also has severe epilepsy with seizures most days, mostly these are complex partial but she also has absences and the occasional Atonic (drop attack) . My wife has care package set up by our adult social care team locally, have you thought about a care needs assessment ? as in our area in South Derbyshire they also have a welfare team who are really good with things like PIP. Anyway I realize this post was a while ago but I really hope you got sorted, this government has treated disabled people in a terrible way from ongoing assessments through to sanctions.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @tasytom, how are you getting on? :)

  • tastytom
    tastytom Member Posts: 18 Connected

    Hi, thanks so much for asking after me! Sorry for my rather late reply but I’ve been lying low lately, my seizures are really taking their toll these days and it’s hard to stay positive and motivated especially with all of this god awful PIP weighing me down.
    Anyway, an update for you...I have sent off my mandatory reconsideration request ( via recorded post ) they advised me on the phone that it’s taking around ten weeks for these requests to be looked at. 
    I don’t really know how I’m feeling about the outcome truth be told...I was awarded 6 points for daily living and am hoping that when they reconsider my entitlement I might be awarded the further two points needed for me to qualify. 
    Time will tell I guess
  • tastytom
    tastytom Member Posts: 18 Connected
    Hi @Paul7210

    Thanks so much for your msg.
    Im currently waiting on the outcome of my mandatory reconsideration request. Fingers crossed I’ll hear back before Christmas! As mentioned above I’m hoping I might be awarded the two further points that will take me to eight in total and I’ll then qualify for daily living. For some strange reason the young girl who came to my home to carry out m assessment seemed to come to some conclusions that certainly aren’t true, she said I could cook meals in a microwave without help or supervision even although I advised her that I’ve had many scalding issues due to having seizures whilst attempting to heat food in the microwave...so much so that I dare not venture near for my own safety, thankfully I have someone who gladly prepares & cooks my meals.
    I totally agree with your opinion on this government’s treatment of disabled people, it’s hard enough trying to cope on a day to day basis without all of this extra hassle. 
    I’d do anything to be “normal” I know that sounds an awful thing to say but it’s how I honestly feel, for me epilepsy has completely ruined my life and I find it gets more and more difficult to manage...it’s exhausting trying to paint on an “I’m fine” face, when I meet people they often say...you’re looking ever so well...if only they knew how I was feeling inside.
    Im hoping your wife is keeping as well as possible. 
  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    edited October 2019
    yes they don't seem to understand how dangerous epilepsy can be if uncontrolled/refractory. If you do have regular seizures you should get enhanced rate Daily Living as well as enhanced mobility. I wish you luck and hope eventually they come to the right decision.

  • tastytom
    tastytom Member Posts: 18 Connected
    Cheers Paul, that was the outcome I was hoping for but now I’m just holding on to see if my mandatory reconsideration request produces a more favourable outcome.
    Im having up to ten full seizures per week so it’s proving difficult to cope as I’m sure you are already aware. 
    Fingers crossed they see sense and somehow I’m awarded the appropriate points.....but I’ve heard so much negativity about these mandatory reconsideration requests that I’m not holding up much hope, 
    They actually advised me on the telephone that it was just a necessary stepping stone to then allow me to appeal..that speaks volumes eh? 

  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    with 10 seizures a week you should be on enhanced rates tbh, what seizure types do you have? do you have family that look after you? do your seizures cluster ? there is help out there so if you need any information just ask.
  • tastytom
    tastytom Member Posts: 18 Connected
    Tonic clonic seizures...absolutely no prior warning so I’m an accident waiting to happen...thankfully I have a partner who takes care of me as well as a small group of really close friends who are amazing. Without them I doubt I’d be here today. 
    The young girl who came out to my home to carry out the PIP assessment although pleasant enough I got the distinct impression that she really didn’t have much of a clue about the complexities of my condition, she just seemed to go through the motions so to speak.
    Even although my partner and I took great time and effort to explain every aspect in as much detail as possible when I requested a copy of her report it didn’t fully reflect the information we supplied, in fact a few parts of it she had simply concocted herself...such as the fact that I am fully capable of cooking a meal in a microwave oven...I could go on and on but I won’t. 
    She even asked if I currently drove a vehicle......I rest my case! 
    Thanks again. 


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