Pip — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.


jojojo41 Member Posts: 3 Listener
Hi, I have epilepsy + awaiting my decision from my pip assessment, have been on dla for 10 yrs + so worried I won't be awarded it as they seem to be so strict now. Anybody else with Epliepsy been declined but have appealed?


  • gnmeads
    gnmeads Member Posts: 187 Pioneering
    Hi jojojo41welcome to the Scope community.  I think most of us that have a long term disability and been on DLA for some time will get PIP. I'm still waiting to hear from them.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @jojojo41 Pleased to meet you welcome.

    Thank you for sharing. Have you seen our information Talk about specific Condition for information and advice.

    May I add a lot of the community are going through similar issues. Have a look at Talk about PIP.

    Ask the community anything.

    Hope that helps

    Take care

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • vixy7
    vixy7 Member Posts: 16 Connected
    Hi, Did you get awarded PIP?
    My husband has been getting dla for around 10 years too for epilepsy and he's had a letter from DWP to make a claim for pip so were just about to start this process and wondered how you got on?
  • Yadnad
    Yadnad Posts: 2,856 Connected
    edited September 2018
    gnmeads said:
    Hi jojojo41welcome to the Scope community.  I think most of us that have a long term disability and been on DLA for some time will get PIP. I'm still waiting to hear from them.
    Most implies that some will not get a PIP award under those circumstances.
    I for one had that problem.
    Previously on DLA from 1995, reviewed 2011 and on High Mobility & Care indefinitely..

    PIP decision in 2013 was 0 points. This happened three times in total. Re-assessments in 2015 and 2017.
  • sob15
    sob15 Member Posts: 3 Listener
    [email protected] I am an epileptic and was on dla for 10+ years. Was made to change to pip the start of this year and unfortunately I lost my award. I’m not at the appeal stage which is being heard next week. I’m absolutely petrified about what’s going to be the outcome. At my face to face assessment I was awarded 4 points for both care and mobility and mandatory reassessment never changed this. I also have 2 bad wrists and a bad foot. My problem was I found the person who done my assessment has written things what I never said and never done. I have drafted a letter and e mailed it to the appeals service today to see if they consider my points before my appeal. It’s hard enough for someone with epilepsy to go on a journey in familiar places let alone with the stress of an appeal hanging over them. 
  • sob15
    sob15 Member Posts: 3 Listener

    Appeal date - 2/10/18

    This is a copy of my letter  can anyone tell me what they think the outcome will be 

    I am sending this letter to say why I am appealing my PIP decision. I can’t write for more than 2 mins without getting unbareable pains in my hand so sending it via e mail instead 

    I am appealing as I feel I should at least be offered the normal rate for both care and mobility or perhaps even the enhanced rate of care. 

    Without my family’s support who are with me 24 hours a day 7 days a week I wouldn’t be able to cope. I suffer from epilepsy which was well controlled up until the start of December 2017. Now I suffer small seizures practically every week. I get no warning when a seizure is going to happen which is the scary thing for me. One minute I could be reading a book on the sofa with my daughter sat beside me and the next I take a seizure which normally lasts from 30secs to 2 mins. I am petrified I don’t know when a seizure will take place. After suffering a seizure something happens your body that only someone who suffers from epilepsy would understand. You feel as though your limbs are made from lead they’re so heavy to lift, you are forgetful, have a fog that kind of descends on you brain that last for a couple of days. No recollection of taking a seizure other than waking up with someone watching over you asking are you alright and all you can think is not again seriously please.  

    I zone out several times a day from 10 seconds to a minute which can be dangerous if I’m in a room by myself. I don’t know I’m doing it either. This along with the lump I have on my foot which is also attached to a nerve is one of the main reasons I don’t go outside anywhere. I don’t go anywhere by myself someone is always in a car park waiting or with me. I’m petrified that I will take a seizure while I’m out or people will look at me limping. One of my biggest fears is taking a seizure in the bath and drowning or the shower and banging my head so thank goodness I always have at least one person in the house with me who’s assisted me to get undressed to wash incase this may happen. I am still awaiting my appointment with the neurologist despite ringing numerous times to see if I’m anywhere near the top of the waiting list but unfortunately the list is very long. 

    The consultant I saw about the lump on my foot and the one in beneath the skin on my right hand has referred me for surgery but there’s a risk the nerve could be damaged in my foot. As the lump is so painful I struggle to walk about 100m at a time without having to have a rest the pain is really that bad. 

    I constantly need reassurance to go somewhere new even with my family. I can’t deal with strange places, crowds of people, unfamiliar surroundings and things like that. It makes me feel so so panicked that something is going to happen me and I wouldn’t know where I am. I feel really insecure about this so anywhere new or unfamiliar that I go takes a lot of planning and persuading from my family. I get really disoriented in strange places so I very rarely leave the house. 

    I do get really down about not being a proper Mammy to my children and that I can’t do anything for them by myself without the help of my family but I really can’t do anything to change this with my conditions. 

    I have 2 very painful wrists. My left one has been operated on many times and as such I have no feeling in 2 of my fingers and the side of my hand. I wear a splint every day for support and because I have muscle loss in the arm. I can’t do anything with this arm with the pain I experience 24 hours a day 7 days a week. The weakness means it is more or less useless as I can’t even lift a pint of milk with it. My right arm also has nerve damage as a result of getting a ganglion removed several years ago. The ganglion was deep and resulted in the nerves in the middle of my hand and 2 fingers also being damaged. I have very little power in this arm also. 

    As a result of this and the danger with my epilepsy I cannot prepare or cook a meal at all by myself. Either my mother, son or sister prepare and cook all my meals for me. I can’t peel potatoes/veg, lift saucepans, the kettle any thing like that that is heavy. If I attempted to lift a boiling saucepan off the cooker I would end up roasting myself as it would land on the floor or worse I could take a seizure during this. I also can’t use a tin opener, open a sealed bottle or anything like that. I don’t have the strength to pull a ring top on a can to open it, I use a straw to drink my cans of coke when someone opens them for me as some days I couldn’t even lift can. 

    Once my family have a meal prepared for me they then may have to cut my dinner into bite size pieces depending on what was being made. Things like chicken fillets , roast dinners, pork chops for example are difficult for me to cut with a knife and fork. 

    I can’t lift the dinner plate from the bench to the table cos my hand goes into spasm and also with the weakness in my arms I drop the plate so even pre preparing dinner for me isn’t an option as I can’t lift a plate from the microwave. 

    My mother washes and dries my hair for me every couple of days. She also brushes and ties it up for me every morning. I can’t lift my arms to do this without it causing me severe pain. The same when it comes to taking tops off from the top half of my body I need assistance to do that. The nerve pain is so intense. Mammy also assists me in getting dressed in the morning. She buttons and zips whatever clothes I need fastened, closes my belt, laces my shoes and when anything needs undone should it be my trousers to go to the toilet or change into my jammies at night her or someone else if always there to help me. 

    I am unable to open child proof bottles, take tablets out of blister packs so without someone sorting my medication into a weekly pill box and leaving the box open in a high cupboard I wouldn’t be able to take my medication. I have alarms set on my phone as reminders as to when I need to take them because of the short term memory problems I have after a seizure. 

    On top of all this I suffer from debilitating migraines. I suffer these at least 2/3 times aweek and have gotten worse since my seizures have gotten more frequent. These migraines leave me with double vision, dizziness, vomiting and a sensitivity to lights. There’s always a fear when I’ve a migraine that there’s more chance of a seizure occurring. Some days when they’re really bad I spend the day in bed as I can’t make it out of bed through no fault of my own. 

    I hope you consider all these points I have made as I really feel I deserve a PIP award of some kind. Living with my disabilities isn’t easy at all and yes if I’m honest most days I’m really down and annoyed with the hand I have been dealt in life. As you can see without the help of my mother, sister and son I honestly wouldn’t be able to cope day to day with the illnesses I suffer from. My mother really is an angel in disguise and no matter how sore or down I feel she tries her hardest to put a smile on my face. 

    As my Mammy is looking after my daughter, my sister has to work and my son is at uni I have had no option but plan to come to the appeal myself. My father will be waiting for me in the carpark but as he’s a COPD sufferer he will be unable to walk the distance into the court with me. This alone is causing me a lot of stress at present having to come to a strange place by myself by I know it is essential to get my claim sorted. 

    Thank you for reading this and hopefully considering all my points. 


Complete our feedback form and tell us how we can make the community better.

Do you need advice on your energy costs?

Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.