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PIP and epilepsy

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  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    Spoke to dwp earlier. A decision letter has been sent on 27th....they weren't able to tell me the decision on the phone as wasn't showing on the system.
  • fia1998
    fia1998 Community member Posts: 2 Listener
    I had trouble with epilepsy and PIP and how they said that epilepsy wasn't a disability but after this we fought the council about my payment and how epilepsy is a disability and that it does affect your life in many ways. When we sued the council for counting epilepsy as a disability they took on doctors notes and testimony and they offered me a settlement and they eventually acknowledged that epilepsy is a disability. Hope this helps xx
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Nikki
    Crossing my fingers for you! hope you have better news than me!
    I am having a word with my epileptic doctor about going back to work as I can not live on the benefits I am not receiving now. I just hope she will see it from my point of view! I will fight the PIP this time but I am unable to do this every year as people are having to do on this site, Ive had enough already the government make me sick. Good luck hope you score enoughxx
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    I doubt it very much with my f2f report that is incorrect that i will have good news. Im dreading the brown envelope coming.

    Im very stressed with it all too and havent even got to MR stage. 

    Im thinking ill do the MR but i dont think i could cope with a tribunal not with my depression and anxiety aswell.

    Have you submitted a complaint against the assessor yet? I have about 2/3 weeks ago before dwp have even made a decision because how she was wasnt right.

    I dont know how you are coping. Stay strong  x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    Just rung dwp again and explained still no letter. Lady told me on  phone been turned down.

    Its what i was expecting but still not easy to take in.
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi lillybelle

    Thank you for your advice. I havent yet received my decision letter. I rang dwp and they told me on the phone.

    So im going to try relax until my decision letter is received then look at appealing.

    Im not going to mention the assessor, but should i mention where i disagree with her comments and state reasons why? Eg. She said i can cook using a microwave but i actually need supervision cooking as very rarely use my microwave. Like you i have complex partial seizures where i have altered awareness, i have had accidents whilst cooking due to loss of sight and awareness but not ended up in hospital. People cant be expected to live just using a microwave especially when you have children and also could be risks with using microwave eg. Transferring food.

    I too also forgot my medication and paying bills. I tried to explain how i am unsafe when out alone during and after seizures but this wasnt taken into account. I have 3 diff types of seizures.

    My epilepsy nurse is going to write me a letter too.

    The assessor wrote that i havr good cognition due to the job i do. Like you i would be affended if anyone thought differently but after seizures i am totally different and at work things have changed.
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Lillybelle 

    Thank you

    Your right work shouldnt count against me and will state everything that has changed. Hours, types of work and health and safety plans put in place.

    Im not going to give up ill just going to take a few days off and not think about it all. Then ill start my appeal. Xx
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    So sorry to hear about your decision on PIP its so unfair what they are doing to people with especially people with our condition. Have you had a look at the link I have sent you previously its really helpful. I have just been completing my MR, just got 3 more to complete. Are you going to contact your MP? once you have the decision letter, you will be able to ring and tell them you are appealing. The date I have to send everything in, is different from the decision date on the letter. My PIP ended on the 8th of May they have given me till the 28th of June. I totally agree with your comment about living off microwave meals, I have a son so you can not just live off the microwave. Guess nikki you have children. Its totally unacceptable to expect your children to live off them sort of meals. You are doing the right thing taking a few days out without the thought of PIP, thats what I did.
    I am seeing my nurse on Monday, I will let you know if I have any information which could help you to complete your MR.
    Try not to stress and I understand how hard this can be not to.xx 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    How did you get on with your nurse?

    I have emailed my MP with the pip pledge but nothing back. Also contacted dwp today to say i will be doing an MR. They wanted me to do it over the phone but i saif no as i would have forgotten things and also waiting on a letter from my nurse.

    Yes i have a 10yr old son and we like to eat healthy so rarely use microwave. Funny thing is i never mentioned a microwave in my assessment so for all the assessor knew i didnt even have one.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    My nurse came to see me and she is going to write me a fantastic letter stating that I have been advised off her not to cook, iron,get baths etc because of safety.
    I would email your MP again I have just heard from mine and they are waiting for dwp to respond before arranging a meeting. I am well on the way with my MR now, its really stressed me out theres been tears because of it! I would ask your nurse for help with your MR because it does help you a lot. I have a 15 year old son so they cant expect us to feed them on microwave dinners there so unhealthy! I cant wait to finish the MR so I can switch off a bit, I've had enough of it. Try to make an appointment with your nurse if you can as well as getting a letter.
    I will let you know when theres more news.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    Thank god i have completed my MR! A lot of work as gone in to this, its a shame I can not send it across to you so it gives you an idea.Are you back at work now?
    Nurse has read it and she says its really good.
    I will let you know when i have any more news.x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    I started mine last night only did 2 paragraphs and re-read my report. Ended up with headache so put to one side for another day.

    What kind of things have you written? Im going to say where i disagree with them, why and give an example etc. Nothing much really else to do i guess.

    Keep me updated and all the best of luck x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi lillybelle 

    Lol yes sounds like a good plan. Just going to do abit each day take my time. I have until 5th july 
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    You have the same epilepsy as me, Temporal Lobe. Tell them what type of seizures you have. Look at the descriptors, if you disagree with what the assessment says tell them why and tell them what you believe you should have been scored. Then tell them how your epilepsy affects you doing that activity mention things like not been conscious when you have had a tonic clonic, memory problems,depression, moods, confused state, been tired and the need to sleep following a seizure, accidents with the bladder/bowel, not making sense, mobility problems, losing your senses etc. Then tell them you are not able to keep yourself safe, not been able to do the task: to an acceptable standard, in a timely, reliable, repeatable, consistent, manner etc.Make sure you mention the 50% rule. Also tell them of any accidents and injuries you have had because of your epilepsy.

     The start of the letter I explained my epilepsy and the type, I had only had it since 2014 not since birth, I mentioned it been life changing, I am finding it hard to cope with, I have lost my job because of this, I have lost my independence, dignity, confidence, self respect etc. Mention aids e.g. shower chair, commode,care line, hand rails.

     I also put this: I attended my face to face assessment at name of centre on the ?March 2018. I have raised a complaint separately regarding my assessment by taking it to the next level with Atos. I have also involved name my Local MP, he is looking into my assessment and complaint I have raised. I do not agree with the inaccurate report and subsequently the final decision for Personal, Independence, Payment. When I attended this appointment I had not had a seizure, if I had the scores would have been entirely different. If you are using a word doc to do the letter remember to put your name, N.I. number, M.R. P.I.P. Page 1/6 and hand written signature on every page. When you have completed it, gather all your docs, letters, seizure diaries and when you ring to tell them you are appealing PIP, you should be sent a letter from them, this needs to go back to them with all your M.R. docs before the deadline date. I would also send it recorded delivery so there are no excuses, or we have not received your letter.
      

    Communicating verbally
     Activity 7
    I have scored 0 I believe this is incorrect.
    I should have scored 4.

    Just before a seizure I can act very strange, during a seizure I lose consciousness, I am not aware of anything around me. I lose all my senses including my sight, hearing, touch, smell, taste and all sense of reality. I will come around from my unconscious state not knowing where I am, at first I do not recognise people as well. My communication is severely affected I am not aware of what people are saying. When I talk I do not make any sense what so ever and talk absolute rubbish. To me I think I am making perfect sense and when others do not understand what I am saying I get angry, frustrated and scared with not been able to communicate or understand basic verbal communication. Without communication support I could put myself in great danger by not been able to understand communication at all.

    I have had a phone call from PIP today and I do not know what to think about it. It was a manager and she asked if I was putting an MR in. She went on to say have you still got epilepsy or have had a miraculous recovery? I went on to say that I still had it and it is the same still not under control, nothing has changed. She then said your report says 0 points thats all. I said well that is down to the assessor putting that everything is fine and my epilepsy has improved. Which is incorrect and I did not say that! Also DWP has not been in contact with any of the Dr's or nurse who treat my epilepsy. She also mentioned the complaint I put in and that I had to take it to the next level but not with DWP with Atos. I also mentioned that the assessor was very bitter about people getting PIP because of epilepsy and comparing her husbands to my epilepsy, I said surely this is not right as every bodies epilepsy is different. She agreed with me and told me to complain about this. I also mentioned the computers been down and  the inaccurate report. I also said that I had an MP looking in to this on my behalf, I then mentioned his name and  she said he is a high ranking MP, do not know what she meant by this. I wonder if she has rang me because of the MP I have involved.

    Nurse has given me the thumbs up and said that my MR was really good, however I bet I have to go all the way to a tribunal. I am going to send my MP all the paper work I have including my MR letter, lets see what this brings.
    I will let you know if I have anymore news, if you get stuck with your MR just scope me and I may be able to help. xx

      

  • justg72
    justg72 Community member Posts: 173 Pioneering
    A bit late to the party here but there certainly seem to be grounds for complaint about the IAS assessor. However, there needs to be clarity that, in itself, there is no issue with a HCP bringing personal experience to bear. How that occurs is really the question. 

    It’s also worth saying that challenging a HCP report is all well and good but it won’t get you PIP. IT may reduce the weight given to their report but if your own evidence is not that great then it’ll make no difference.

    As has also been said on other threads, there is no onus on DWP to seek evidence on your behalf. You’re the claimant and you have to evidence your claim rather than the DWP. 
    Hi mikehughescq
    I have been in contact with epilepsy action, The DWP who deals with P.I.P. over the phone two, of their workers, The DWP manager and my own epileptic nurse have all agreed that the HCP should not bring her husband in to other PIP claimants assessments. She can not compare her husbands epilepsy which he has had from been 6 years old and for the last 10 years his seizures are under control, to somebody who has seizures daily. I think there's a big difference when people receive the diagnosis in their thirty's and forty's, its totally life changing. Also how can you compare somebody with uncontrolled epilepsy who struggle every day to somebody who has not had a seizure for ten years. Every bodies epilepsy is different and some are more affected than others following a seizure.
    The HCP seemed really annoyed that people with epilepsy claim benefits, this was pointed out in not just my assessment, but nikkis as well. We both had our assessment with the same HCP and at the same place. The HCP also said that her husband had always worked, but then said he had lost many jobs because of his epilepsy. My nurse is giving me medical evidence now to send in to tell them that my epilepsy is not under control, unpredictable and affects me more than 50% of the time. The HCP said I could cook, bathe, iron, etc without supervision. Professionals which deal with epileptic patients would strongly disagree with this and would advise not to complete these tasks unsupervised. I am surprised the HCP did not say I am fine to drive because she said I could do other dangerous tasks alone. Anyway I am taking the complaint to Atos thats what the DWP manager told me what to do.
      
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @justg72 and @nikkij83 Glad I wasn't butting in! I always feel like my condition is functionally a bit like epilepsy, except that at least I'm awake afterward, although definitely not compos mentis. It's horrible when you never know when you'll have a spasm/fit, isn't it? One time I was in the bathroom with the door locked. Couldn't get off the loo, but as the door was locked, my partner couldn't get in. I was in there for 45 minutes before I managed to get to the door. :/ 

    @nikkij83 Yeah, still waiting for appeal date, 8 months later. ?
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi waylay
    I know exactly what you mean about constantly thinking am I going to have a seizure today or in your case its different but sounds similar to seizures. Every time I go out thats all I think about, this can lead to having a seizure. My nurse has backed me up with not been able to cook, bathe etc unsupervised in a letter and said she advises me not to do these tasks if I am alone. Sending my MR off on monday lets see what happens next. 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    How are you? any updates.

    Ive just received my response from atos regarding my complaint. Totally what i expected so will be writing to then again.

    At the time i complained i hadnt received a copy of the report so when i reply will be stating what is wrong and was never said.

    Their reply is just what i imagined and feel like just giving in. My husband tells me not too

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