PIP, DLA and AA
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PIP and Epilepsy

mac1976mac1976 Member Posts: 63 Listener
edited October 2019 in PIP, DLA and AA
Hi I’m new here today. I’ve been on DLA for 16 years. Epileptic for 30 years. I’ve just had a letter telling me I have to claim pip. I’m starting to wonder if not to claim at all. The assessment process is worrying me. I’m losing sleep over it if I walk into a room they will think nothing is wrong with me. I’m so worried about it. 

Replies

  • mac1976mac1976 Member Posts: 63 Listener
    hi I’m new today and worried sick. I’ve been on DLA for 16 years epileptic for 30 years. I’ve just had a letter telling me I have to apply for pip. It’s the assessment side that I’m worried about. If I walk into a Assesment they will think nothing is wrong with me. I need help. 
  • mac1976mac1976 Member Posts: 63 Listener
    Can can someone please tell me how to remove this post please it’s put my phone contact in the discussion box thank you. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @mac1976, what would you like me to change the title to?

    I'm sorry to hear this has caused you so much stress. I appreciate how difficult this change can be, and that they are not the same benefits. It may be worth looking at the descriptors to see if you would be entitled for PIP. We have had many members go through this process so we can support you through it.  
    Scope

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @mac1976, just to let you know that I have merged your two discussions. :)
    Scope

  • mac1976mac1976 Member Posts: 63 Listener
    Thank you for replying I’m just so stressed with it and feel I won’t be belived. How can someone comment on what they can’t see. I’m starting to wonder if not claim at all. The is so much bad press about pip and epilepsy. Ps can you please change it to pip and epilepsy. Thank you. 
  • mac1976mac1976 Member Posts: 63 Listener
  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    Hi guys do the dwp follow what the report that was done bye capta when they make a decision about your pip claim 
  • mac1976mac1976 Member Posts: 63 Listener
    That’s what I’m worried about. How can someone who’s seen you for a hour know how your affected. I’d have to have a fit right in front of them or them see me after it’s happened. 
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi @mac1976
     As everybody is switching from DLA to PIP it is always worth filling out the claim. Not all assessors are as bad as they are painted it’s just that you only tend to hear about the cases that fail.Successful applicants do not have to complain.
    Even though the criteria are slightly different there is lots of information out there and you can do an online PIP self test for some idea.
    After all if you don’t claim you’ll get nothing after your DLA runs out so accept any help you can get and good luck with your claim. @poppy123456 seems to be pretty clued up about how the system works.
       Debsidoo.x

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Thank you for your advice @debsidoo

    @mac1976, they are different benefits but you still could be entitled to it. There is also this article that goes through each descriptor in detail and may help you see which ones fit yourself.

    Please do let us know if there is anything else we can do to help. :)
    Scope

  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi guys do the dwp follow what the report that was done bye capta when they make a decision about your pip claim 
    Hi @ozzy19721968
    In general the DWP do go by the report offered by the assessor.You can request a copy to be sent to you.I suggest you call them after a week and ask.If it’s a negative report you do have the option of applying for a Mandatory Reconsideration if you feel evidence was misunderstood or if there were any pertinent points missed. Finally if this is unsuccessful you can always take it to Tribunal.
           Debsidoo.x
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi having just read your post i wanted to let you know i also suffer from epilepsy and i am in receipt of pip for both daily living and mobility. I understand your concerns but i would advise you to proceed with your pip claim. 
    Not all outcomes are negative there are success stories i am one of them. 
    Try and not let it take over your life with worrying. I can only tell you my experience but my assessment wasn't at all bad i felt it was more of a chat however saying that my daliy living was stopped after assessment so you just don't know anything for sure. I appealed decision with MR and won.
  • mac1976mac1976 Member Posts: 63 Listener
    Thank you for your advice. It’s all the bad press with pip and epilepsy that I’ve seen. Can I ask how long your appeal Took. Just do I might know what to exspect. 
  • mac1976mac1976 Member Posts: 63 Listener
    Morning I’ve just been on the phone to welfare rights. Been told it’s now very hard to get pip with epilepsy. I think I’m going to have to find some help with filling my form in. I’m going to prepare myself to lose it. 
  • DanteDante Member Posts: 14 Listener
    @mac1976 i have just been through the process of transition from a life time award of DLA to PIP all my problems are mental health as you say unseen with support from my GP i was awarded 10 points for daily living and mobility this got me standard rate PIP for each however i didn't agree with the daily living points so I asked for a mandatory review which i won and got an extra 6 points it is always worth a try get as much medical evidence of your condition as you can people on this forum are wonderful and will give you all the help and support along the way good luck 
  • mac1976mac1976 Member Posts: 63 Listener
    The is a lot of stigma with unseen. I asked a train conductor once how to apply for a disabled train pass. He asked me was I taking the p***. That was in front of a train full of passengers. Just wanted the ground to open up. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi my assessment was on the 11th May and payments stopped on the 20th May. I applied MR on the 28th May and got my decision on the 31st July. 
    What you have to remember is pip is not about your diagnosis but how your disability affects you on a daily basis.
    I am sure you will make the right decision for you on whether to apply or not for pip. Please keep us updated and if you require any further help please just ask.


  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    Thanks got a copy of my report .the report has awarded me 12 points for living part and 12 points for mobility and to be reviewed in 2yrs was just wondering if the dwp change any of the remarks that the assessor gave me .the only thing I was concerned about said that I didnt have any restrictions on my driving licence when in fact it does he actually had my driving licence in his hand but he didnt look as I have to renew my licence every 3 years due to medical condition 
  • woodbinewoodbine Community Co-Production Group Posts: 5,048 Disability Gamechanger
    I have epilepsy and was moved from DLA to PIP in the summer ended up getting more £ from PIP than I had on DLA the assessor was very professional and went into how my seizures affect me, it helps if you have copies of letters from your neurologist etc. OP how many seizures do you have on average say per month? I have about 12 grand mal and 120 absences per month, do you have any other conditions? e.g my epilepsy causes m to suffer from depression, and what side effects do you get from the medication, I have periods when my sight is badly affected.
    These are the sorts of things you need to highlight because its about the care and mobility issues not the epilepsy itself, another example I am not allowed to go out on my own due to the risk it would mean, have you ever been made aware of SUDEP?
    When you get the PIP forms I would suggest you contact them and ask for an extension on the return date, they usually give you two extra weeks no problem, use the time to research epilepsy and PIP its not right for anyone to suggest that its difficult for people who have epilepsy to get PIP. It can be done and is done.
    I will now only offer benefits advice on PIP, and specific benefits advice for other people with Epilepsy. 
  • mac1976mac1976 Member Posts: 63 Listener
    I don’t have as many as you. Probably 3 grand mall a month. I’ve bern having a lot at night lately and losing bladder control. I’m on antidepressants have been for 5 years. I’ve been epileptic for 30 years. I don’t go out alone Or if I do I get a taxi to and from. I always feel tried. Can’t remember the day leading up to the fit. When I’ve done the pip test it’s only giving me 4 points for living bit 10 for mobility. Even though I need help to get changed when I’ve wet myself. 
  • mac1976mac1976 Member Posts: 63 Listener
    I’m losing sleep over it. As you will know we need our sleep so probably not doing myself any favours. I’m starting to think do I go ahead it or just leave it. I’ve been looking at the safety aspect of it all. Would that apply to me. Could even mention the crippling head aches. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Good advice from @woodbine not much more i could add. 
    We do understand having been through it....just be open and honest and explain how your disability affects you. 
    I know its a very stressful process and i hope you have got lots of support and remember you having nothing to lose by applying.

  • mac1976mac1976 Member Posts: 63 Listener
    It just knocks you when you ask for advice to be told the government have changed DLA to save money so the criteria is much more harder. I don’t use that money to buy myself nice things. It’s used for taxis and things like that. I have to keep myself safe as much as possible. The has been times when I’ve not gone home but to A&E. My sons always ringing me when I’m out. He’s grown up with me returning home with black eyes and my forehead being the size of a ballon. The last bad time I came round in a shop with paramedics cutting my coat off. It was my local shop the next time I went in they said they had to run a disc off the camera to cover them selfs in case I sued them. The lady who was in the shop said she Heard the bang of me hitting the floor from the other side of the shop. I was in hospital for a week after that. It’s always on your mind if get home. Sorry to go on. Suppose this is what I should be saying to them. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @mac1976, I can see how stressful you are finding this and I'm sorry for that. I definitely would mention the headaches if they link to you being unable to complete one of the descriptors. Did you have a chance to look through this article that helps to break down what the descriptors mean?

    You also might find it helpful to seek local face to face advice.

    I know it's difficult, but we are all here to offer support and guidance.
    Scope

  • woodbinewoodbine Community Co-Production Group Posts: 5,048 Disability Gamechanger
    mac1976 said:
    It just knocks you when you ask for advice to be told the government have changed DLA to save money so the criteria is much more harder. I don’t use that money to buy myself nice things. It’s used for taxis and things like that. I have to keep myself safe as much as possible. The has been times when I’ve not gone home but to A&E. My sons always ringing me when I’m out. He’s grown up with me returning home with black eyes and my forehead being the size of a ballon. The last bad time I came round in a shop with paramedics cutting my coat off. It was my local shop the next time I went in they said they had to run a disc off the camera to cover them selfs in case I sued them. The lady who was in the shop said she Heard the bang of me hitting the floor from the other side of the shop. I was in hospital for a week after that. It’s always on your mind if get home. Sorry to go on. Suppose this is what I should be saying to them. 
    Thats exactly what you should be telling them try and keep a diary for the next 2 or 3 weeks record what happens and send it with the forms, if you need more help we are always here for you.
    I will now only offer benefits advice on PIP, and specific benefits advice for other people with Epilepsy. 
  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    Stress over I have been awarded enhanced rate for mobility and daily living and got a review in two years was so worried but all over for now 
  • mac1976mac1976 Member Posts: 63 Listener
    I’m really worried it’s the assessment that’s doing me. What if I get muddled up and done explain it properly. The test says I will only get 4 points for living. 
  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    I was worried about the assessment and didnt think I would get awarded anything reading some of the stories about the two companies that do the assessment. But just stay calm and have some one with you that knows how you are affected with your illness and dont answer the question straight away think about what they ask you and explaine as much as you can after all they are just a person like you I had my wife with me and was a great help she helped with questions and said things that I didnt think of and I just been told I am to get both enhanced rates so it's not as bad as you think yes they do observe you from the minute they walk in but keep telling them how your illness affects you I have trouble with my neck back and knees I said I have days where I cant move and the odd days where I am still in pain but can move about slowly .just stay calm and think about the question before you answer. Let us know how you get on 
  • mac1976mac1976 Member Posts: 63 Listener
    This is going to sound bad. I know people get that benefit cos they can’t work. I have a job that I do 2 days. It’s a zero hour contract for the purpose of my epilepsy. If I can’t go in I don’t. So don’t alway have a wage. Sometimes I swap my days to how I feel. I sit at a desk and take phone calls to pass messages on. I’m just worried that will go against me even though the job centre encouraged me to do that. I just don’t want to feel like I’m scrounging. I’ve not been in this week with not feeling to good. I just think the assessor will think well if she has a job the is nothing wrong with her. 
  • mac1976mac1976 Member Posts: 63 Listener
    I have been on DLA for 16 years. I was sent for a interview at the job centre due to my husband being made redundant when he claimed job seekers. They told me I could work while claiming DLA. I just think that’s it now it’s gone. We felt like we was scrounging then. My husband had never been out of a job since leaving school. My job now is flexible they are very understanding 
  • mac1976mac1976 Member Posts: 63 Listener
    After a long hard think and a chat with my husband. I’ve decided not to go ahead with the pip claim I know I will only get 4 points for daily living. The job I have will go against me. I will ring in Monday to say I want to cancel the claim as the form hadn’t arrived yet. Just can’t be dealing with trying to jump through hoops. Suppose they will then tell me that my DLA has ended. At least I will still get my medication free as epileptics are exempt from percription charges. Thanks everyone for your advice. Much appreciated. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    I am sorry to hear you are still feeling under stress regarding pip. I can honestly say my assessment wasn't bad. They basically ask you the same questions you have already answered on the application form.

    You seem to be convinced because you have the courage and strength to work this will go against you. Pip isnt about your ability to maintain a job its how you disability affects you.
    Like many of us you seem to have daily stuggles because of your epilepsy and that's not something that you are in control of.
    You say you feel like a scrouger why ? .....you are entitled to pip if you qualify like rest of us. You are entitled to a good quality of life and if because of your condition you require help to achieve that then you go get that help. 
     I was like you very stressed , worried , upset prior to the assessment and nearly gave up as its all so overwhelming and can take over your life. But here i am i survived it and got the award i believe was correct.
    I am not saying all are happy endings but as my beautiful mum used to say to me..... if you dont go and get off your a..e lady and fight for something you believe in then you will never know what may have been...and she was right but then again she always was right.
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    Hi @mac1976 I'm writing as I remembered reading about epilepsy in the Benefits & Work 's Guide to PIP, which I've pasted below:

    Safety and supervision
    Until now, the DWP have argued that a claimant can only score points for being unsafe if harm is
    likely to occur on more than 50% of the occasions on which they attempt an activity.

    So a claimant with epilepsy who has seizures twice a week would not get points for needing
    supervision when cooking. This is because they could not show that it is ‘more likely than not’ that
    they will have a seizure on any given occasion when they prepare food

    However, on 9th March 2017, in CPIP/1599/2016 a panel of Upper Tribunal judges held that the
    DWP were wrong.

    Instead, they said, the decision maker should look at whether there is a real possibility that harm
    might occur and also at how great the harm might be. The greater the potential harm, the less likely
    it needs to be that it would happen on any specific occasion.

    So, if there is a real possibility that a claimant with epilepsy might have a seizure whilst cooking
    then they reasonably require supervision for this activity, even though the chances of a seizure
    happening on any specific occasion may be quite small.

    They should score points for needing supervision even if they don’t actually have anyone to provide
    it.

    But the Upper Tribunal went even further than this.

    They ruled that where a claimant is at risk all the time, then they may also be at risk when carrying
    out PIP activities that do not carry any additional likelihood of harm.

    So, a claimant may not be at any additional risk of harm if they have a seizure when using the toilet
    or taking medication, for example. But, because they are at risk whatever they are doing, then we
    would argue that they still reasonably require supervision during these activities, because they
    cannot do them safely without supervision.

    Going out

    Upper tribunal ruling on safety and supervision
    See ‘Safety and supervision’ above for more on this decision.

    In CPIP/1599/2016, the Upper Tribunal held that claimants do not have to show that they would be
    at risk ‘more often than not’ in order to reasonably require supervision when carrying out an activity.

    So, if you need someone with you when walking outdoors because you have epilepsy, for example,
    and may need assistance if you have a seizure, then we would argue you should score 12 points for
    this activity.

    This should be the case even if you have seizures only rarely, if they are potentially very serious.

    ---------------------------------------------------------------------------------------------------------------------------------
    You've already received some great advice from other people.

    I hope you may take the time to also read the excerpts I've included. Sorry it's lengthy, but I hope it may explain how you would probably score way more points than you've thought for both the daily living & mobility components of PIP.



  • mac1976mac1976 Member Posts: 63 Listener
    Thank you so much. I’ve been looking through the net to see about epilepsy and pip. Maybe the welfare rights man I spoke to was having a bad day. He didn’t seem to confident I’d score points. The citizens advice was so helpful. They said they will help to fill the form in if I needed them. I just might reconsider and give it a go. Thank you for advice from everyone. You have all been a great help. I wear my heart on my sleeve so need to get things out. Thank you again. Xx
  • saz11saz11 Member Posts: 121 Pioneering
    👍 Good for you. 
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    edited October 2019
    @mac1976 - Delighted to read you may reconsider, & Citizens Advice have undoubtedly helped many people with PIP.

    On a personal note, I too have an 'invisible disorder,' as do many others here. I'm in pain the moment I'm upright.....so you certainly can't see that either!

    Just fill in your form completely honestly, then there will be no surprises at your assessment, as they just go through where you've described problems in this; that's all.

    Another thing; you mention bladder incontinence following epileptic attacks. You can write about this in the additional pages at the end of your form, even if they don't necessarily fit elsewhere....that would be where to comment on having to change your clothing; bedding etc., & any help you might need to do so.

    Remember, just ask any questions you need. As Chloe said, this community will support you in any way we can.
  • mac1976mac1976 Member Posts: 63 Listener
    Morning I’ve been to the doctors this morning. She has given me a report path. It’s got all my medication on plus the date i started with epilepsy. The is 2 different dates on. 1992 twice and 1994. Just says epilepsy. Will that be enough for me to send with my form. 
  • mac1976mac1976 Member Posts: 63 Listener
    Just a question with my epilepsy sometimes I get a sudden warning with a numbness going down my arm but that’s it then I’ve gone but other times I don’t get anything at all. Should I just explain it how it is. I can’t get myself anywhere safe in that time between the warning and fit. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    mac1976 said:
    Morning I’ve been to the doctors this morning. She has given me a report path. It’s got all my medication on plus the date i started with epilepsy. The is 2 different dates on. 1992 twice and 1994. Just says epilepsy. Will that be enough for me to send with my form. 
    Do you have more evidence than that? That won’t be enough because that doesn’t tell them anything about how your conditions affect you against the PIP descriptors. 
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    I will go back it wasn’t my doctor just a fill in so she had never seen me before. I just don’t like bothering anyone if I don’t have to. Do I need to get something from the doctors. I’ve started filling my form in. I think I’m babbling on a bit on it. I’ve read it back it’s sort of sounding like a story. That’s how I’ve exsplained it in my own words. I hope I’ve not messed up on it. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi glad you seem more positive. 
    Do you see a consultant for your epilepsy? 
  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    Hi all how are we all today .having a good day so far managed to get a few hrs sleep the most I have had in a few months 
  • mac1976mac1976 Member Posts: 63 Listener
    Yes I go to the Walton centre in Liverpool. I don’t know who I’m going to see yet. I’m there on the 14th nov but my form has to be with them on the 8th. I just hope I’ve filled the form in correctly. I’ve just said how it is I my own words. 
    How I am after it happens
    I’ve said that I need to keep myself as safe as I possibly can. 
    Ive also put that I can’t tell you when it will happen and where as I don’t know myself. I’ve got no control over that. 
    Ive mentioned the triedness the headaches loss of bladder control 
    how I feel after a seizure and how long it takes to feel okay 
    I’ve used the sheet at the back of the form to explain it in more detail  on how it is in my own words. 
    I have said I’m not very good at putting pen to paper. I would exsplain it better face to face. 
    Just hope it doesn’t look like I’m waffling on and Making it sound worse than it is. 
    Ive said I do have some good days but still have a headache and feel tired. 
  • woodbinewoodbine Community Co-Production Group Posts: 5,048 Disability Gamechanger
    edited October 2019
    Two of the things they will be interested in are the frequency of your seizures and and if you get any warning.
    If you have now filled in the form as best you can make sure you make copies before sending it back and include a copy of your repeat prescription. When you have a face 2 face (the vast majority do) as above try and have someone with you who knows all about your seizures and how they affect you.
    The face 2 face is quite involved, its aim to find out what care and or mobility issues you have and usually last upto an hour.
    Don't be put off applying as thats what the "system" wants you to do, there are far more good outcomes than bad.
    I will now only offer benefits advice on PIP, and specific benefits advice for other people with Epilepsy. 
  • cristobalcristobal Member Posts: 987 Disability Gamechanger
    @mac1976 - before I completed my form I kept a diary - just notes on a sheet of A4.

    This worked quite well for me because I had a clearer picture of how my condition affected me.

    Perhaps you could keep a note of your seizures and how these affects you (what you were doing when they happened, was it unsafe etc) and incontinence issues. This might help you to complete the form?
  • mac1976mac1976 Member Posts: 63 Listener
    I’m going to send a date sheet with when I’ve had them. I will need my husband to help me do it. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi the reason i asked about you seeing a consultant is that i have read many times on here that your GP can not say how your condition affects you.
    Your consultant is much better qualified to do this. 
    If you include there details on the form and if DWP need to contact them for any clarification then they can and also tell them about your next appointment.
    I too suffer with epilepsy and i just told them exactly how epliepsy affects me daily and gave them my consultants details along with my repeat prescriptions.
    I am not saying it easy it not its a very stressful process but there there are sucessful outcomes.
  • mac1976mac1976 Member Posts: 63 Listener
    The receptionist at the doctors gave me a fact sheet that includes my perception list. I just feel that all I’m going on about is my epilepsy. I will include on the form that I’ve got a appointment at the Walton centre and which date. I can’t give them a name as I’m not sure who I will see on that day. I just don’t want them to think I’m pulling a fast one. I’m not getting my hopes up what will be will be. 
  • mac1976mac1976 Member Posts: 63 Listener
    I have included the triedness and headaches. I’m using codine now as ibuprofen and paracetamol aren’t touching it. I do have some good days it’s just I can’t tell if I’m going to have a fit becouse I don’t know myself. As you will know that. I’ve included my safety at the end of the day I need to keep myself as safe as much as possible the only way it effects me day to day is the triedness and headaches plus the cooking and bathing. So don’t think I will get it for that anyway 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    Future appointment letters/dates are not classed as evidence because it doesn't tell them anything about how your conditions affect you.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    I will just have to send the form back without then and see what happens. I will speak to the consultant and see if he can send me something for when I go to the assessment. I’m just having a lot of second thoughts about it. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    Do you have any letters from Consultant appointments that you've had in the past? When myself and my daughter has appointments i get sent a copy of the letter that's sent to our GP, then i keep all those letter to use as evidence.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    @mac1976 I only had my GP's supportive letter, as he knew me well, but as he'd been on holiday, I didn't get it in time to send off with my PIP form. I took it in for my assessment.....so yes, any additional medical evidence you may get, take with you to the assessment.

    It sounds like you've filled in your PIP form very well btw. That's what you need.....just describe how you're affected & the safety aspect.
  • saz11saz11 Member Posts: 121 Pioneering
    edited October 2019
    @mac1976

    Tell them about your appointment if i remember it does ask if you have any upcoming appointments . No its not evidence but giving them as much info as possible gives them a better understanding of what going on and that you are attending appointments with a epilepsy consultant. At your appointment ask for a copy of the letter covering that appointment and what was discussed and any future treatment which  you can take to your f2f. If at your f2f they do not accept the letter forward a copy to DWP with your NI number on it with a quick explanation and follow up with a call to make sure they have received it and scanned into there system. Anytime i have phoned i have always found them very helpful.

    Epilepsy does affect each person differently some people are able to manage it with meds and live a relatively straightforward life but others unfortunately cannot get the condition under control and it impacts on nearly everything you do.

    Safety is my number one priority as i have suffered some very serious injuries due to sezuires and i have to minimize risk were i can.

    It can be quite difficult for people to understand the impact epilepsy has on you. You can only go and be honest with them and explain it how it is thats all you can do. You not lying about having epilepsy the evidence will be there for them to view if they wish to do so and request it. You just have to tell them how having epilepsy impacts on your daily life and anything you have had to put in place to keep you safe. 

    Also let them know if your medication causes you any side effects.
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    Advising that they request evidence if they need it is incorrect, sorry. They very rarely contact anyone for any evidence. The onus is on the claimant to prove they qualify.

    Giving 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you is also extremely useful.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Just a few things to go over and ask yourself.
    Does epilepsy prevent you
    from:
    Going out alone....do you always need someone with you for safety reasons.

    Can you cook a full meal with a cooker on your own. Again safety reasons i.e.have you taken seizures when cooking alone.

    Can you prepare your food on your own...has doing this caused any injuries to you while you carry this out......the use of sharp utensils etc.

    Can you use a microwave to cook full meal or just to heat up a ready meal.....are you able to remove hot food and liquids from a microwave without risk.

    Can you bathe and shower on you own.....or do you alawys have to have someone with you for safety....have you have a seizure whilst doing this when on your own.

    Have you substained any injuries as a result of seizures

    How long does it take for you to recover after a seizure, how many do you suffer weekly.

    Does epliepsy cause you to feel down or depressed.....what does it stop you from doing i.e. hobbies....being around people and family. Do you isolate yourself , are your fearful of having a seizure all the time. 

    There are lots of things you wouldn't necessarily think would be relevant but they are so i thought i would give you a few things to think about.. These things may not apply to you but hopefully it gives you a rough idea of some of the things they question. 
  • mac1976mac1976 Member Posts: 63 Listener
    Thank you everyone for listening to me. I’ve been so stressed since I got the letter to apply for pip. My DLA was a life time award. Do to think that could just be taken away over night has worried me. It’s all I can think about at the minute.
  • saz11saz11 Member Posts: 121 Pioneering
    @poppy123456

    HI Poppy just to clarify my understanding of pip is not about providing evidence of you health condition its about how it affects you which i believe is the evidence that would be expected to be provided by a claimant. I was trying to reassure mac1976 that their health condition is not in question the evidence of their diagnosis is there if the DWP wish to review. If i am wrong in saying that please could you have my posts removed. Thank you

  • mac1976mac1976 Member Posts: 63 Listener
    Please don’t ask for your post to be removed. You have been most helpful to me when I needed it and appreciate it very much. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976 

    Thank you. I have been advised i have given you the wrong information which i apologise for that it wss not my intention. I hope things get better for you and hopefully you can put this behind you very soon and get on with your life.
  • mac1976mac1976 Member Posts: 63 Listener
    I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    saz11 said:
    @poppy123456

    HI Poppy just to clarify my understanding of pip is not about providing evidence of you health condition its about how it affects you which i believe is the evidence that would be expected to be provided by a claimant. I was trying to reassure mac1976 that their health condition is not in question the evidence of their diagnosis is there if the DWP wish to review. If i am wrong in saying that please could you have my posts removed. Thank you

    You are correct in saying that it's not about the health condition, it's how it affects you. It's also not about a diagnosis.

    Lots of people assume that DWP and the health assessment providers will contact medical professionals for evidence but it very rarely happens.

    I'm not authorised to remove any posts because i'm not admin, i'm a Community Champion here. You have been very helpful here and i thank you for that but i just didn't want others reading this and thinking that DWP contact medical professionals, which is why i corrected that.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    mac1976 said:
    I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 
    Why do you have to keep yourself safe? You need to spell it out to them (so to speak) I know what epilepsy is because i have it myself, although i've been seizure free for many years thankfully.

    For example.. do you need someone with you when you shower/bath? If so then why do you need someone with you? What happened the last time you attempted to bath alone?

    When you go out do you go alone or do you need someone with you when you go? If you need someone with you why do you need someone? Have you ever been out alone or been left alone while out? If so what happened? These are the sort of things that you need to put on the forms. Use extra paper too because there's never enough of room to put all the information on the forms. Make sure you add you NI number and name to everything you send.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Yeah as you say that's all you can do....the points i listed are some of the ones i came across. The thought of a f2f is very stressful but try and look at it this way.....its just another human being across the desk from you , just be you , take your time to answer questions they ask ,  don't worry about taking to long this is your time to make sure you get everything you want to say recorded for the report , dont feel pressured or let them led you into an answer.

    Honestly my f2f was fine and i wish i hadn't worried so much because at the end of the day you have no control over their decision but you do have control over you and let me tell you are strong enough to do this because us epilepsy sufferers are made of strong stuff as are all the other people who live with a disability and have fight just to have a decent quality of life.
    Things seem unfair at times but i just remember i am lucky compared to some people and i have been through quite alot of rubbish times in my life and the DWP wont get me down . Try and not let it get you down either. Please dont give up we are all here for.....even for just a moan 👍
  • mac1976mac1976 Member Posts: 63 Listener
    I’ve used a example of when I went to my local shop and had s fit. I came round with my coat being cut off me. I was taken out on a body brace as I’d gone face down. I had to have a scan once in A&E. I still couldn’t tell you to this day how I got to the shop. That’s quite worrring who knows I could have walked into the road. Luckily my sons friends mum works in the shop so my family was told I was there. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @mac1976, I appreciate how stressful this can be. You have had some really good advice here, so I hope it helps!
    Scope

  • mac1976mac1976 Member Posts: 63 Listener
    I’ve been to see a fantastic benefits adviser today. He exsplaind things to me I didn’t even think of. The forms completed and ready to be posted. He’s told me if I have any problems just call him. Thanks everyone for being there for me this past few weeks. I will let you know the outcome when I know. Xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    That's great news @mac1976! Thank you for updating us and we all have our fingers crossed!
    Scope

  • mac1976mac1976 Member Posts: 63 Listener
    Morning I sent on form in 2 weeks ago. I got a phome call yesterday to say a assessment will take place at home on Saturday morning. Dose anyone know why they are coming to my house. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    Sometimes home asseessments take place without even asking for one, if the evidence you send suggests that it's needed. It doesn't mean anything other than it's in your own home. The process is the same as if it were at an assessment centre.

    Good luck and don't forget to request a copy of the assessment report about a week after the assessment.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    Thank you I was getting a little worried that they are coming to have a look around my house to see how I live. 
  • ozzy19721968ozzy19721968 Member Posts: 29 Connected
    Hi mac sometimes if you live to far from the assessment centre or they think it would be unsafe for you to travel to it .nothing to worrie about I had them come to my home to do the assessment. Keep calm and think before you speak and get it over how your disability affects you on bad days and you will be fine 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    They won't ask to look around your home because that's not part of the assessment. It's not just about your bad days, you should tell them about all your days, even if you have good days or better days because it's about being honest.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    Morning all I’ve had my assessment this morning. The nurse was very understanding and said epilepsy is not a very nice thing to have. I have got a injury to my eye from a seizure. So she saw that. She also mentioned that pip now take epilepsy seriously. I was asked did I have a job. It’s a zero hour contact so only go when I can I did explain that to her. I don’t want them to contact my employer as I don’t want them knowing my financial business. So think it went quite well. I was shaking when I passed her my ID don’t know what came over me. She was lovely and said she hopes I get the results I want when she was leaving. Dose anyone know if they contact a employer wasn’t asked who they are. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    It's very unlikely that they will contact your employer.

    Wait a week after the assessment and ring DWP for a copy of the assessment report to be sent to you, This will give you some idea what the decision is likely to be because they mostly go with the report. You'll still need to wait for the decision of course. Once the decision is made, if you're not happy then you'll have 1 month to request the MR. Good luck,.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    She did say that I will most likely need a assessment in 1 to 2 years so not sure what she meant that. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    They are not supposed to say anything like that to you because it's not their job to do that and it definitely doesn't mean anything at this stage.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    I’m worried sick that they will contact my employer as I’ve never told them at work im on DLA. 
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    Hi @mac1976 Please don't worry about them contacting your employer as they rarely even contact a person's doctors. You can work whilst you're getting DLA or PIP, so it doesn't matter anyway.
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    There would be absolutely no reason at all for anyone to contact your employer.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    Thank you I worry all the time over nothing anyway. I didn’t sleep much the night before the Assement she was lovely anyway and put me at ease with her understanding. It was at home so that made me feel a bit better. Hopefully I will still get something 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,060

    Scope community team

    Hi @mac1976. I'm glad to read your assessor seemed understanding. Best of luck with the decision, I hope you hear back soon. :)
    Community Manager
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
  • Hannah2610Hannah2610 Member Posts: 12 Connected
    My assessor the first time round seemed like she really understood how my condition effects me. I believed she was understanding, I was wrong.
    I had to go through a tribunal, whilst waiting for that tribunal there was a change in case law  with regards to safety and supervision. I believe I was actually the first person to reach a tribunal after this change. I basically walked in a room, they brought up the change, an I walked out of there with standard care and enhanced mobility.
    I am now going through the process again :(
    I am really upset that they question my memory and emotions. I have TLE, an I've had a lot of seizures, partials and generalised. My memory is in bits, an my emotional state has been noted for the past 10 years. They asked me...why didn't you mention you have anxiety and depression? 
    I applied for PIP based on the fact I had epilepsy, not anxiety and depression. An if you look at my diagnosis letter, they put everything on the epilepsy. It causes issues way beyond just falling to the floor. It's a painful process, an it's very hard having to stress how it effects you, when it's there in black and white.xxx
  • Joanne_AlumniJoanne_Alumni Scope alumni Posts: 190 Pioneering
    Hi @Hannah2610,

    I am sorry to hear that you are having to go through the tribunal process again!
    I hope that the result goes in your favour.
    Keep us updated and let us know if we can be of any help.
    Joanne 
    Scope
  • mac1976mac1976 Member Posts: 63 Listener
    I’m actually waiting now for a result it’s been 9 weeks now. I’m feeling so down at the minute my seizures are affecting my mood I feel like the is a dark fog in my brain that cannot be lifted. I’m there right with you. Good luck let’s hope we both get a result. I’m on pins with it all just waiting for the letter to arrive. I’m not putting much hope up. I did say I couldn’t explain it with pen to paper I’d rather speak it out. 
  • saz11saz11 Member Posts: 121 Pioneering
    @mac1976

    Hello i haven't been on for a while but your post popped up i had a quick read through the thread again. Its really disgraceful the amount of time taken to make these decisions and  thats not even to mention the impact this has on your day to day life. I remember it well all the waiting time i went through. I also remember the waiting time on the decision to stop my award only took 6 days from my assessment. 

    Sorry i am having a bit of a rant it just angers me that this is allowed and in the meantime your health suffers.


    Really i just wanted to say good luck and i really hope you hear soon take care x 
  • woodbinewoodbine Community Co-Production Group Posts: 5,048 Disability Gamechanger
    mac1976 said:
    I’m actually waiting now for a result it’s been 9 weeks now. I’m feeling so down at the minute my seizures are affecting my mood I feel like the is a dark fog in my brain that cannot be lifted. I’m there right with you. Good luck let’s hope we both get a result. I’m on pins with it all just waiting for the letter to arrive. I’m not putting much hope up. I did say I couldn’t explain it with pen to paper I’d rather speak it out. 
    if you had your assessment 9 weeks ago you can contact them and ask for a copy of the assessors report (PA4) which will give you an indication of the award they are suggesting, the DWP usually follow the recommendation.
    I will now only offer benefits advice on PIP, and specific benefits advice for other people with Epilepsy. 
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    Hi again @mac1976 - It's good to hear from you again, but sorry to read you're not feeling so well. I know it's a hard thing to do, but try not to worry; that doesn't change anything. Sorry it's taking so long to hear the result; I do hope it's not much longer.
    Did you ask for a copy of the assessor's report? The DWP Decision Maker usually agrees with that, so it would give you an indication of how many points you've scored, & what any award might be.
    How did you get on at the Walton Centre?
  • mac1976mac1976 Member Posts: 63 Listener
    I haven’t asked for the report I will ask for it. The doctor at the Walton centre has upped my tablets. I will be getting a appointment for a ECG to see what’s going on. I’m getting terrible headaches since they have put them up so I’m on codine for them. Thank you for asking. Xxx
  • chiariedschiarieds Community Co-Production Group Posts: 10,154 Disability Gamechanger
    Please do ask for a copy of the Health Care Professional's report. Do you know when you'll get an ECG? Sorry to read about what you're going through. It must be very difficult for you. Please do talk here any time & let us all know how you are.
  • mikehughescqmikehughescq Member Posts: 7,131 Disability Gamechanger
    It’s worth doing a search on here for PIP and epilepsy as there have been long and relevant discussions previously. 
  • mac1976mac1976 Member Posts: 63 Listener
    I’m worried to ring them to be honest. I’ve had DLA for 16 years. Knowing that it can just be taken away in weeks is really worrying. 
  • mac1976mac1976 Member Posts: 63 Listener
    I’m worrying yet the is a women 2 doors from me who claims she can’t walk or bend yet she was in her garden laying decking. Then there’s me with something that’s completely out of my control and I might have to jump through hoops to prove how I am. That angers me. 
  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    Please don't judge others. PIP is about how your condition affects you at least 50% of the time over a 12 month period and not how you're affected all of the time. People do have good days and bad days and on those good days they maybe able to do more things.

    No one knows exactly how a persons conditions affect them.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    Yes suppose I shouldn’t have said that. 
  • mac1976mac1976 Member Posts: 63 Listener
    Well my letter has arrived I’m at my mums house. My husband has just rang to say the brown envelope has come. I told him to open it. I haven’t got it. That’s all he has said and to read it myself when I get home. I’m not going to appeal. Just going to get in with my life now with nothing hanging over me. Thanks everyone. X
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Really sorry to hear this @mac1976!! If you do change your mind and wish to appeal then we will all be here to help. If you need any support then please let us know.
    Scope

  • poppy123456poppy123456 Member Posts: 22,980 Disability Gamechanger
    I'm sorry to hear this. If you do decide to request the MR then you will have 1 month from the date of the decision. You should put this in writing stating where and why you think you should have scored those points. Adding a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Do remember that DLA and PIP are different benefits with different criteria. PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

    Most MR decisions remain the same so you'll very likely have to take it to Tribunal Waiting times are huge in most areas so it's likely you'll be waiting about a year for a hearing date.

    Yes, it's a long process but if you think you're entitled then you should challenge that decision.

    Have a read of this link and it will give you some idea what the PIP descriptors and criteria mean.

    Do be aware that your DLA ending could affect any other benefits you maybe claiming.

    If you do change your mind and have further questions then please do ask and i'm sure someone will help and advise you.

    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mac1976mac1976 Member Posts: 63 Listener
    Thanks I’m not bothering I don’t claim anything else just the DLA. So it’s only that I’m losing. 
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