lifesucks Member Posts: 4
edited 13. Oct 2017, 14:32 in Say Hello Archive
Hello all, I was diagnosed ages 2 years old with Stills disease where the Dr told my mam I would go blind and have heart problems and die by the age of 12. When I was 11 in the Red Cross Memorial Hospital Taplow my mam asked how much longer I had to be told I was wrongly diagnosed and I actually had Chronic Juvenile Rheumatoid Arthritis. Anyhow life went on and today I'm coming up for my 53rd birthday. Unfortunately three years ago I lost my mam, my best friend. And since then I have been relying on my sister to help me. Which has caused loads of arguments. So after three years of sitting in my pyjamas watching telly relying on family. My only days out have been to the rheumatologist or GP. I decided to apply for Direct Payments, and I have come on here to see if other people are using direct payments and really to be nosey to find out if the amount the council are taking from me is right. I am paying almost £60 a week towards my Direct Payments out of my benefits for 18 hours a week of care, and they expect me to fund my own cleaning services, Since I had a big fallout with my only sister my dryer is now on constantly so my bills are sky high as I cannot hang washing out, but the council do not seem to care. My house is falling to bits so any savings to repair my roof or level my back yard have now gone out of the window, and the council will not help me with a disabled facilities grant for the yard as they only help with bathing/hygiene. I receive one hour on a morning to help me bathe and dress and one hour on a night for same and 4 hours to help me get out and about per week. Is this excessive or about right?


  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi lifesucks Welcome to the forum I am glad you found us,wow what a lot you have been through, we have a helpline 08088004050 who will be able to advice you if you want to speak to a person they will be happy to speak to you. Meanwhile this forum has a lot going for it, everyone has a form of Athritis and will happily chat to you at any time, the most popular forums are Living with Arthritis and Chit Chat.
    Just choose one and chat and you will soon get an answer.
    All the best Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am so sorry to read your post, what a tale of woe. I can empathise with the ill-health since childhood and guess I am fortunate in that it prepared me for what is going on now. I have psoriatic plus osteo arthritis (around forty joints are affected so life ain't that much fun) and fibromyalgia. I worked for fifteen years despite things worsening and only claim DLA. I have no other experience of the benefits system, have finally paid off the mortgage and am determined to remain as independent as I can.

    Your living arrangements don't sound ideal but I have no idea whether the council is doing right by you. Are you a council tenant, renting privately or is the house yours? Is your GP aware of how low you obviously are? I take a small daily dose of an anti-depressant to help me cope. I wish you well. DD