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Need some help

deejay2038 Member Posts: 20 Connected
I have been profoundly disabled for 18 years by Porphyria (my blood is basically poisoned) and hypermobility EDS I partially or fully spontaneously dislocate joints. My doctor does home visits cuz i am house bound. I also have a care plan drawn up by direct payments but I could not afford my contribution.  I have been considered a high risk via social services to live alone for 18 years. . They even got special permissionn when in my early 40's to move to an old peoples place cuz of the risk. To say i am ill is an understatment. 

 I  had the asessment to change from DLA to PIP. I was getting high rate of care. I am in a wheelchair so they kept the mobility and have given me zero care. If i was at risk before it is tenfold now. I have no family with no support because the social care system is broken. The oly way i could live losing the care and sda is to go into full time care. 

I am  not even well enough to handle this on my own which is partially why I failed it I think.  It's representative of the rest of my life. 
They have had letters from my doctor before for the same disease can they ask for evidece multiple times for the same incurable disease? d DWP doctors have come out before and given me the high rate and i have deteriorated since then how can I not now qualify as the rules to qualify are the same? 
To give me the mobility is treating me like I am fine just my legs don't work. It's an illness that puts me in the wheelchair and intractable pain. 
The help social care was going to give me alone gives me double the points needed. I can activate the care plan at any time though I would probably have to be reassessed. I have no family no one to turn to help me even financially during the process i am hoping to get a quick reverSal at the MR as I am now greatly endangered 
MY GP is not alot of help my diease i so rare doctors never usualy see a cse so they know little to nothing about it.  
Any help/advice appreciated. 


  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hi @deejay2038 and welcome

    Have you asked for / received a copy of the assessment report ?
    The advice we usually give seems barely adequate for your situation.
    Is it possible for you to get trained help from an advice centre near you ? CAB, Welfare rights or similar
    For an MR the suggestion is to go through the PIP descriptors and give 2-3 examples of what happened last time you attempted that activity

    The best Suggestion I can give is for you to ring the Scope help line first thing in the morning
    0808 800 3333
    Be all you can be, make  every day count. Namaste
  • deejay2038
    deejay2038 Member Posts: 20 Connected
    Thank you, I think calling tomorrow may well be a great idea
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    I am sorry that I can't come up with anything better but we have some very knowledgeable members who might have other suggstions. There is usually someone here if you need to talk or just let off a bit of steam
    Be all you can be, make  every day count. Namaste
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger

    I'm afraid i don't have any advice other than agreeing to what CR has advised about getting some expert advice. This link will help you find what's in your area if scope are unable to help.

    Good luck.

  • deejay2038
    deejay2038 Member Posts: 20 Connected
    I have a criminal barrister friend who will help me if it gets to the appeal stage .it really should get overturned at the MR
    Last September I had to go to using an electric chair because my one arm is now so unstable and painful I mean I am housebound,   it has on my GP file "medically housebound"  i only need it for around the home because of the state of my arm. its on mobility so they can see that change for themselves when I tell them why.  I also have emails I sent to Birmingham social services and between me and a case worker. which covers a lot of the issues I have.  I have made a complaint about the assessor to Capita. 
  • deejay2038
    deejay2038 Member Posts: 20 Connected
    I have had my MR letter ready  I told them if i have to get the care plan reactivated as the only way I can prove my case I will do.  Because I would have no contribution. I also asked them what I was supposed to do dislocate a hip while she was here? lol I knew when she was here she was disregarding everything I said, I could tell.
  • deejay2038
    deejay2038 Member Posts: 20 Connected
    edited March 2019
    It seems to me these assessors are the people getting money under false pretences, not us! They are not doing the job they are being paid to do.


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