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Rare disease - reassessment of DLA for life - help!

cynders Member Posts: 14 Listener
edited February 2018 in PIP, DLA, and AA
We have a health person out this Wednesday. Husband has a rare disease and is the eldest living person with his variant of GSD , he has Forbes/cori’s . In 1993 ,we had a gov. Tribunal that stated he will receive his DLA for life . All dated and stamped ,  I still have it . Tony is 64.
Now this person is due out and he’s in a dreadful state. The letter came this morning.
He also has COPD ,has insulin dep. diabetes, osteoporosis, grossly enlarged liver ,has had a lot of bowel removed due to a thrombosis.
Is doubly incontinent. Ulcers in his toes due to diabetes.
He suffers from depression. Has had a stroke plus he’s had 9 TIA’s.
 I am his carer and am also disabled. Please someone help ? If we lose the Motability car I don’t know what we’ll do .
Thank you.x


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @cynders
    Is this for a reassessment on PIP and motability? 
    Senior online community officer
  • cynders
    cynders Member Posts: 14 Listener
    Yes , he receives both @ higher rates .x.
  • cynders
    cynders Member Posts: 14 Listener
    He's asleep at the moment , but he's scared they'll stop his DLA  ,he didnt sleep much last night . We live in Cornwall ,and desperately need the car.
    He has so much wrong with him ! x
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @cynders
    Im sorry this is such a stressful time for you both, PIP is for people under 65 and so I wonder if this is the reason for your reassessment.

    There is some information here on benefits on Age UK that might help you.

    As with any assessment, it's important that you and your partner are honest and clear about the impairment and exactly how it affects you on a day to day basis.  It would be good to have the names and contact details of any doctors, nurses or therapists they see too.

    I know it is a worrying and stressful time, but know that we are here for you, let us know how you get on and if you have any other questions.
    Senior online community officer
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Thinking about you for tomorrow @cynders

    Let us know how you get on!
    Senior online community officer
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    All the best for today @cynders, let us know how it goes.
  • cynders
    cynders Member Posts: 14 Listener
    Hi ,we had it and although she said Tony would get the high rate mobility still , he probably wouldnt get the care. I am his carer . Dont know how we'll manage without it. Our heating's on all year because he's on warfarin and his leg muscles are badly wasted.
    I clean up if he poos the sheets because he hasn't put his Tena on properly and lots more .
    Constantly having to buy new bedding  , cant understand things.
    I just phoned a disabilty number for DLA/PIP enquiries and he wants £100 upfront and just cant afford it at the moment. Or they'll take it in smaller amounts via PayPal .Hope this made sense. When you know you're going to cry, don't put mascara on. That's my thought for today .
    Sorry I've not come back to the forum, really very upset now.x. 
  • cynders
    cynders Member Posts: 14 Listener
    Thank you . I'll contact them .We now have to wait for 6wks or so , such a worry and I've a lot wrong with me also inc. a heart condition .x

  • wildlife
    wildlife Member Posts: 1,293 Pioneering
    @cynders I feel for you but just want to say. Please don't take anything the assessor said as fact. Although they make suggestions as to what your husband should be eligible for it's the DWP who make the decisions. Assessors are well known for not saying it how it is. Try and get some help with this, you really need it right now. A problem shared is a problem halved as the saying goes. 
  • cynders
    cynders Member Posts: 14 Listener
    Worried about my heart , I've a cardiac loop inserted as I have aortic stenosis
    (I don't need an op yet ) and arrhythmia which has been a bit crazy this week but I can phone Duchy Hosp. and be straight in . I'll see how I go this weekend .
    I feel better talking about it all on here , and the GSD site. Can't always be on here but I can catch up. Thank you.
  • cynders
    cynders Member Posts: 14 Listener
    Sorry I've not been back . I'm very ill , this has killed me.
    Anyway , I clicked on the link you gave me and all I can say is her people skills need upping a lot !!
    She told me several times that nowhere or way does anyone get DLA for life.
    I told her about the court health tribunal paper my husband was given and she said that won't say for life.
    So , I asked her politely if I could read from said tribunal paper , she grudgingly agreed ,so I did. 
    (It says both DLA  high rate components for life).
    She said , well I've never heard of it , never seen one of those .
    Well I have it here !!!!
    We have it , court tribunal numbers , names of the panel etc. dates etc.date from start of the DLA FOR LIFE , typed twice.
    Not feeling at all good now , but I have it and I'll start phoning somewhere else tomorrow. I think I need a solicitor to look at it .
    I am so ill , husband's on the verge of another TIA ,he's had 9 of them.

  • CockneyRebel
    CockneyRebel Member Posts: 5,212 Disability Gamechanger
    Hi cynders

    Have you asked for a copy of the assessment report ?

    Be all you can be, make  every day count. Namaste
  • cynders
    cynders Member Posts: 14 Listener
    No , at the moment we are both too scared . 
    I might have to call for an ambulance now , he's grey. Charlotte's trying sweet hot tea . Sorry for this .x
  • Salamka101
    Salamka101 Member Posts: 40 Courageous
    Like everyone who has responded here my thoughts and best wishes go out to you. I only wish Esther McVey and her Tory cronies could be persuaded to read this entire thread. Perhaps even their hearts of stone might be moved by the agony you are going through.


  • SethLaa
    SethLaa Member Posts: 111 Courageous
    Hi, I think the confusion comes from the 'DLA for life', I too get the same but just like everybody else on DLA I have to transfer over to PIP (Personal Independance Payment), there is now no such thing as 'DLA for life'. I hope this helps and take care yous 2
  • Tricia1912
    Tricia1912 Member Posts: 41 Courageous
    Hi cynders l feel so much for you and your plight. How disgusting it is to think that a person like your husband with so many health problems can be treated like this. They are making you both so ill. It’s shameful. Surly to goodness, just listening to both your health problems they should rubber stamp  your claim and lm sure they could. I really hope you get someone with a heart and is nice.  I will be thinking of you.   
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @cynders, I also wanted to add my sympathies for what you're both facing at the moment. You've had some good advice from the community members above, and I hope you know that we'll be here to listen whenever you need. Please do keep us updated and we'll advise where we can.
  • [Deleted User]
    [Deleted User] Posts: 23 Connected
    I don't know what to say as I am a newbie but I do wish you all the best.
  • cynders
    cynders Member Posts: 14 Listener
    Thank you everyone. We're waiting for the ghastly brown envelope to appear.
    This has made me so ill , I have a heart complaint also .
    Neither of us are sleeping properly .
    The main and dreadful thing is that I voted Conservative !! Something my daughter keeps reminding me of. 
    Thank you.x.
  • cynders
    cynders Member Posts: 14 Listener
    Hi everyone , just had to reset my password as I couldn't get back in.
    I've been in hospital for quite a while as I now have ischemic heart disease diagnosed .
    But ,the main thing is that Tony receives highest rate mobility and care from now on. So , that's a relief . I spoke to a lady at PIP and said just how stressful it has all been ,that it can make someone terribly ill , but of course it's nothing to do with her , she just answers the phone.
    Did PIP give me my heart diagnoses ? Who knows .
    Hope all are OK ?


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