Pip and epilepsy

I have just been given my pip decision and I find it strange, the have acknowledge that I have epilepsy and my meds control it but thay have dismissed the fact that I need supervision as I don't have warnings of fits and some of the day to day things I can't do are more for epilepsy and the dangers of it than my other health issues.

I was asked it i can walk a distance but I wasn't asked if I am safe to walk that distance at night with the chance of flashing lights going pass which happens on a daily basis where I live and if that happens what do I do or what could happen to me?

I actually felt that thay ignored the dangers of every day life of people living with conditions like epilepsy as the meds are working but not being funny that's great as if the meds or diets didn't work where would we be horrible thought.

Anyone else had this type of answer from pip and do you feel like pip isn't taking your safety into account?

28 Replies

  • Yes they deniedd me after a home visit.

    I rely on my wife etc for transport dangers of cooking; kids being looked after and just anything that related to me being alone.

    I said bathing was an issue as i have tonic clonic seizures . I travel to london . So dangers are being overlooked for people with epilepsy.

    I was told by someone that pip was advisable and shouldnt be a problem as this is a disability and should be entitled to belp.

    I felt that if i was not working and my wife was not working we probably would have received some sort of help.

    My memory is also bad which is epilepsy related but after a quick 5 min test they thought no he is fine.

    Totally misunderstood and feel cheated compared to what they hand out to these work dodgers

    Maybe answreing the questions honestly was not the way forward.

    Pip was to give you personal independance and day to day living with epilepsy is hard. Not that i have seizures frequently but it still makes me reliant on other people which i hate.

    I cant drive . I get no help with travel. My job has been effected and been demoted to a lesser position which is another story.

    My wife has been at the point of breakdown because we have two young children and she has to ferry them about.

    I get down that i cant help but hey according to the pip scoring im perfectly able

  • Sounds like the same reply i got from them.

    I called the DWP after receiving my decision as what they awarded me does not even equal what someone getting jobseekers allowance would receive.

    I have uncontrolled epilepsy and i cant work or drive and my partner has had to give up work to be a full time carer for me.

    I get admitted to hospital numerous times per year and kept in for anything up to 10 days after a seizure.

    But this does not seem to matter to the DWP as i am not in hospital over 50% of the time.

    Even what doctors and consultants say and organize are totally overlooked by the state and does not even count.

    I can understand your situation completely.

  • I know what you mean as I'm also a cancer patient who has only just started to have good test results and am now going through the 5 years remission and that wasn't even mentioned even though the genetic team are involved and have said that it's not a matter of if but when will I get it back as someone my age and a woman don't get colon cancer unless it's in the gens basically saying I'm only going to get worse as I get older.

  • Go to citizens advice with this and put in a mandatory consideration letter straight away.they like to see what they can get away with.Keep fighting until you get what is rightfully yours

  • "mandatory NO-consideration", been there and done that and it does not change a thing. They will reply with exactly the same decision and you will need to escalate this to a tribunal.

  • I have heard alot of people with other health issues go to tribunal and says that is the only place where you get a fair trial and alot of them get the unjust thay suffer over turned and justice is done for them but the stress and worry of getting there is too much to handle.

  • Yes and when you are "ILL", stress is the last thing you need on top of everything else. The system is really unfair and rather than all the nonsense of these pointless assessments people need to attend, they could by default just contact your doctor or consultant and get a written report and save the state a lot of time and money in the process.

  • I like you and your absolutely right but in the eyes of dwp if it doesn't kill us then we must be fit for work and a letter is just too easy also we could have our Dr's wrapped around our little finger but in the real world that's not the case at all. I don't know about you but I respect my Dr and I got his respect by what I said when we first met and that was " no offence but given you job except for medication I hope I don't have to see you again soon as that shows that you are very good at your job " that made him laugh and he said thank you and since my cancer treatment I don't see him much and that's how it should be I inform him of important stuff like if I have had a fit or if something is bothering me but I'm not sure if it's a big deal or not otherwise just meds.

  • It's good if you have a doctor or consultant that you can have a good rapport with. I have seen a few doctors and a lot of consultants over the past 10years and there are only 2 that stood out and made me feel like they actually wanted to help and tried everything they could to help me and also made light hearted jokes about things. Always a good thing when you have a doctor that can make the best of a bad situation :)

  • agree happened to me too CAB helped best they could but DWP just say no to everything

  • Yes they have turned me down twice for same reasons my epilepsy is SUDEP which means my heart stops and I'm at risk of death......had to have pacemaker fitted and I have no warnings of my seizures and once I have one I am done for the day helpless confused and usually have quite a damaged body sometimes with broken nose busted lips and well bitten tongue to the point I cannot eat or drink even if I wanted too this affects my ability to take meds and I can't be left alone.. I still got refused. Appeal and good luck.

  • Even if you need around the clock care, it does not appear to matter to them either. If you are bad enough with any health condition that you require help or care to manage your condition then it should be took into consideration and then reflected that you are "unwell" enough to need care and scored accordingly.

  • Just to update I've sent the letter for reconsideration and sent it next day delivery which they got Friday morning and I've pointed out stuff in there awards letter like sending out the wrong assessor, claiming I'm safe on a new dose after being on it for less than two months ( I'm due for my six month check soon) ect

  • Hi I am in exactly the same situation as you at the moment, totally confused they didn't take any of my information on properly plus I don't get warnings of my seizures either started my appeal today good luck to you..

  • I got a text today saying that they have received my letter of reconsideration and thay are looking into it.

    Will keep you informed

  • Don't hold your breath for them to change their mind on a "mandatory reconsideration". Done that myself and the DWP never changed their stance or decision. Have had to take it to an appeals court to see if they can take a look at how severe my condition is and how it affects me.

  • I'm actually expecting it to go to appeals but unfortunately this is the first step I know I shouldn't be surprised by how we get dismissed on the importance of epilepsy care as epilepsy is not a new thing but it surprises me every time at the lack of knowledge and care people have and the " I don't give a damm " attitude it's so sad yet we are the ones that have to make huge changes to our lifestyles just to have a normalish life so we can be happy.

  • I also have experience with neurologists ignoring me or even once telling me to shut up and bare with it. I've always tried to find a way around the problem.

    Me and my 6 year old son live with my parents and I am currently 19 weeks pregnant with a baby girl. I rely on my parents A LOT even though I'm already 24 years old. I too have tonic clonic seizures and has no warnings or forebodings before a seizure. There is a long list of everyday things I'm not capable of doing due to the dangers of epilepsy such as driving, bathing alone, swimming, handle stress, etc... We all know the list ;)

    I rely on my parents for transport or I walk. My mom waits in front of the bathroom door even if I just need to use the toilet. I totally avoid all swimming, smoking, alcohol poisoning, parties and anything with flickering lights.

    By the way I don't mean to sound racist or anything but this is the truth : Here in South Africa it is safer for whites to stay inside after sunset with all your doors and windows locked, especially when living near a striking university. I guess in that way I'm kind off lucky not having to walk past vehicles with flashing lights in the middle of the night.

    South African neurologists are very rare and extremely expensive never mind finding one that would actually listen to your problems. I've juggled 6 neurologists in the last 13 years and they just keep on giving me more meds until I end up like a zombie because of side effects from all the different meds at once.

  • My daughter has had 2 assessments for PIP and in both assessments it was clearly explained the dangers of personal injury when carrying out day to day tasks especially using public transport. She has tonic colonic seizures without warning and panic attacks and need for assistance to keep her safe. Their response was similar to yours and she wasn't awarded any points therefore no financial support. We only wanted help with transport so she could continue to travel to the local university to continue her course, but they completely disregarded any of the day to day battles she experiences. The assessor a are qualified health experts but don't inform you of their area of qualification. The person who decides the outcome of the claim never meets the person being assessed. The system is a complete and utter shambles

  • I agree with you I have a friend who's husband suffers from fibro ( short name I can't spell the full name but it's something like fibromyarsa really hard to spell) and thay found out that the specialist that seen him was a paramedic no consultant type of expert at all so it makes you wonder what they class as experience could a trained first aider qualify? It sounds like it if a paramedic can do it, where are the field specialist's?

  • Hi , I have just received my pip assessment and they have given me mobility but not the care allowance seems like they think I am safe at home but not outdoors I got 4 points for cooking supervision but nothing for bathing, taking meds and if a seizure may happen when eating or drinking I have many times burnt myself spilling hot drinks and putting hot food in my mouth my meds have never controlled my seizures if I didn't have my daughter living with me I don't think I could manage , the assessment letter stated that I had good eye to eye contact and didn't look under weight what that has to do with epilepsy I don't know, I feel insulted the way I was treated I am sending a letter to appeal so will have to wait for the outcome this makes things worse for me causing stress which cause even more seizures

  • I know how you feel but I might be able to offer some hope my friend her husband has fibro thay just won appeals against pip thay won enhanced on both rates so keep the fight up.

    For myself I'm currently having problems with my post so if I haven't heard soon I will find out and update you all

  • Yes pip was horrendous with me with my epilepsy if it's not visible to them they don't understand .

    It went to tribunal and My mum and husband won it for me!..

  • Did you attend the hearing, or did your mum and husband win without you.

  • I attended they were very harsh . They didn't know the ins and outs of it all though xx

  • Hi romaluna2015,

    I'm just wondering how your family ended up winning it for u. I've been fighting my case for 4 years now and they just won't give in . I have all the different types of seizures from absences to tonic clonic and they're getting worse .

    I take numerous types of meds and all they do is make me sleep.

    When I had a tribuneral no one was allowed to help me answer any questions which was difficult because they asked me what happens, how long they last etc and I had to turn round and say "how am I supposed to know ? I'm the one that has them not witnesses them ". Because of this I was classed as a unhelpful witness . Like I say I can't be a witness because I have them I don't see them .

    Could you or your family possibly give me some advice as to where I'm going wrong please ?

    Thank you ( rraditau)

  • I can often not bath alone as I have multiple epilepsy seizure types. Can not use a cooker because my seizures are uncontrolled even with 12 tablets daily :( epilepsy has its impact and takes its toll

  • My life has turned upside down, although I have had Epilepsy since age of 11, I’ve never had so many seizures in 40 years as I have had in the last 4 years. I nearly had a Nervous Breakdown, was getting divorced from a controlling alcoholic and my memory has been severely affected. I have no income and lots of outgoings. At my PIP interview I was asked a few questions, to remember and repeat 2 things and to walk in a straight line, subsequently turned down.... I don’t know how to appeal.

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