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living with a chronic condition (part 4)

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  • pipkin71
    pipkin71 Posts: 21,821 Forumite
    bigzippy wrote: »
    I have been told, several times, to fill in the forms as if it's your worst ever day. Everyone (of us that I'm aware of at least) has the better days and the horrid days, as well as the ones somewhere in between. You have to fill it in as if it's the worst tho, as the worst come round all too often and the support has to be there for when it is the worst.

    I disagree with this bigzippy.

    Yes, many do have the worst days, the better days and the days in between, but to fill the forms detailing only the worst days and not mentioning how it was on the other days would be untruthful imo.

    I filled in the forms giving examples of what it was like on both the bad and my better days and was awarded DLA. The decision maker even states on my award that although my needs vary, it is based on my needs as a whole, which is the bad days, but I'm happy I was truthful and put how life is on the better days.
    There is something delicious about writing the first words of a story. You never quite know where they'll take you - Beatrix Potter
  • bigzippy
    bigzippy Posts: 4,034 Forumite
    pipkin71 wrote: »
    I disagree with this bigzippy.

    Yes, many do have the worst days, the better days and the days in between, but to fill the forms detailing only the worst days and not mentioning how it was on the other days would be untruthful imo.

    I filled in the forms giving examples of what it was like on both the bad and my better days and was awarded DLA. The decision maker even states on my award that although my needs vary, it is based on my needs as a whole, which is the bad days, but I'm happy I was truthful and put how life is on the better days.
    I was stating what I was told, but I take your point. And I did actually state for each activity/symptom that it varies.
    "I am indelibly stained by hope and longing" - Nuts in May
  • my last dla renewal was filled in with on a bad day/episode i need help to do task followed by giving an example. there was lots of when i am struggling with this i need this aspect, when i am struggling with that i need this etc tec. i did put a qualifier in somewhere stating that my condition was variable and there were times when i needed less help than others. it was renewed with a statement saying something like that although my condition is variable they believe the help would be of benefit to me most of the time.i think that the fact that i acknowledged that it was variable helped, as it made it clear i was not saying i was this bad 100% of the time....im pretty sure that up to date advice has changed to say that filling it in as at your worst only implies that you are always that bad, and doesnt get believed/accepted by the decision makers/computer program which they compare with.

    for help with dla i seriously reccomend dial uk or affilite if there is one in your area (can be checked on the dial uk website). or joining benefits and work and downloading thier guides to claims and apeals etc. both organisations are up to date with current rules and regs and are specific to disability benefits. cab is only good in some branches, if you are lucky, and i was given completely the wrong advice about how volunteering would affect my dla by my local cab, whereas dial were spot on with correct advice.
  • pcl I would be interested to hera what the correct rules are about volunteering. I've often thought of helping out at Cats Protection but ws unsure whether this is allowed or not. Also I can't commit to certain times/days as it'll all depend on how my health is that day.

    Hi kaj. Hope we can be of some help here and in the Cafe with coping with illness and just life in general.
    I must go, I have lives to ruin and hearts to break :D
    My attitude depends on my Latitude 49° 55' 0" N 6° 19' 60 W
  • I would apply for DLA, but don't get down if you are rejected at first. I have just been told I don't qualify, but both CAB and my doctor believe I qualify and have said that more often than not DLA is turned down at first then awarded on appeal. The point is all you will have lost is a couple of hours, but you could gained so much more by applying xxx
    2019 win
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  • black_paw
    black_paw Posts: 1,791 Forumite
    Part of the Furniture 1,000 Posts Name Dropper Photogenic
    i think you allowed to volunteer ..but think you have to tell the job centre that you are they register on your forms,,can earn upto aswell i think £ 20 ...i had it done as at first i could do this ..but the doctor said no more retail for me ! so far have'nt done any as feel to poorly at times to to ok to do such day such time ..as i change feelings all the time..hopefully understand that
    the truth is out there ... on these pages !!
    <3
  • bigzippy
    bigzippy Posts: 4,034 Forumite
    I think you're right blackpaw. I had a friend who was a volunteer at a charity shop whilst on disability and he was allowed to do so long and only earn upto £20 a week I think it was.

    I'm in so much pain with this ankle this arvo. I might have to have a nap... see if that helps me cope better. My stupid doctor (not normal, preferred, GP) actually said the words "how do you overdo it with ME?".:mad: He did a home visit and didn't even look at my ankle. And refused to comment on whether the spasms were normal or not, or how to cope with them - just said "however you think's best"! :angry: It's almost as good as me asking for crutches from the hospital yesterday and her suggesting Nurofen...!:confused:
    "I am indelibly stained by hope and longing" - Nuts in May
  • sammy10
    sammy10 Posts: 177 Forumite
    Thanks for the advice. I called for an aplication form and the man (well he sounded about 12!!!) said "Oh youve just got epilepsy, doubt you will get it for that do you still want the form" :mad:
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.

    Guess I wont hold my breath then:rolleyes:
  • sammy10 wrote: »
    Thanks for the advice. I called for an aplication form and the man (well he sounded about 12!!!) said "Oh youve just got epilepsy, doubt you will get it for that do you still want the form" :mad:
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.

    Guess I wont hold my breath then:rolleyes:

    Sammy, I'd say that you've got a very good chance of getting DLA with epilepsy, needing supervision for a substantial portion of the day would get you middle rate care, watching over in the bath or shower, whilst near hot pans/oven etc. and lower rate mobility for needing supervision in unfamiliar places if you were to need that too. If you were to fit in the night and need help for more than 20 minutes, or more than once in the night, then you might get high rate care. I'm not totally with it this eve, but I'm going to PM you something that will hopefully help with your application.
  • sammy10
    sammy10 Posts: 177 Forumite
    Invasion wrote: »
    Sammy, I'd say that you've got a very good chance of getting DLA with epilepsy, needing supervision for a substantial portion of the day would get you middle rate care, watching over in the bath or shower, whilst near hot pans/oven etc. and lower rate mobility for needing supervision in unfamiliar places if you were to need that too. If you were to fit in the night and need help for more than 20 minutes, or more than once in the night, then you might get high rate care. I'm not totally with it this eve, but I'm going to PM you something that will hopefully help with your application.

    Thank you, and dont wory about not being with it Im like that all the time:o
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