A little help and advice needed x

Hi everybody I've just joined this group and would love to know how others cope. I paid a visit to the pain clinic to be told I've been refused a stair lift and a wheel chair because I don't fit criteria and research shows that with my age (26) and my conditions (fibro and double scoliosis)aswel as other things physiotherapy should fix it. Grr feel stressed and let down. Also wasn't asking for the chair full time only when im seriously struggling and the stair lift for the days I'm left sleeping on a sofa and using a commode because I can't make it up the stairs

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  • So, so sorry Dussy90 you are struggling....Can you Appeal against this decision? I don't know....I think we all realise that any help we can get through any Benefits Agency is almost gone; unless?.......unless what I ask? How does one get help? I am fortunate to have an OH who can do stuff to make my life easier, but I do live

    in a bungalow. I do hope you get some good advice on here which helps...xxx

  • Hi thank you for the response I'm unsure what I can do because nobody seems to take me seriously it was the same when I tried getting a diagnosis and help for scoliosis I was 19 then. Could I also ask what is OC? XX

  • I am sorry you are struggling to get your conditions recognised. Is your GP any help at all?

    I have been frustrated at every turn just to get a new wheelchair. My present wheelchair was given to me six years ago and it was old then.

    After contacting Adult Services, ringing several different numbers and being told conflicting information, I finally came to the right person in the council.

    Me: Hello, could you help me please I am looking for a new wheelchair that is perhaps a bit lighter for my husband to push and to replace my old decrepit one.

    Him: There is a long wait for an assessment and you have to be in a specific category. What do you need a wheelchair for?

    Me, (confused) I need a chair because I can't walk very far without pain and I am very unsteady.

    Him: So you don't need a wheelchair for indoors?

    Me: No, I can manage because I live in a small bungalow and I hold on to different bits of furniture.

    Him: Sorry can't help you, we can only give chairs to people who can't walk indoors, not for outdoor use.

    Me: But what do I do about a replacement chair?

    Him: Sorry can't help you.

    I was gobsmacked!

  • If all else fails go see ur local MP,don't take no for an answer,they r there to serve their community, praying for you,God bless,Jay

  • Hi all thanks for the replies adult services are coming next week to do an assessment to see if I need a carer so I'm hoping they will help me with the chair problems and hopefully local mp will help out as I've helped them in the past. As for gp's all that I ever get to see is locum doctors. arrgghh hope everyone elses case isn't too stressfull xx

  • Is there any way you can find a support group in your area that would help with a wheelchair or stair lift. I would also suggest putting an ad in a classified section like kijiji or something that your looking for one. I hope you can get some help.

  • Hey I never thought of a support group thanks for that feel a bit more hopeful now :) x

  • Hi, the red cross can supply wheelchairs and other equipment. Good luck

  • Well that sounds really awfull for you I went to the pain clinic and to be onist I was not imprest at all Infact I fell asleep a couple of times Not that I'm saying they don't do a good job but all those tasks was stressful to me and it seemed like all they was doing is justafying there jobs There was 10 in the session and only two of us had been diegnosed and when I brought this up I got a bollocking We all cope the best way we can and we all consult on what medication we're on so you only got to ask Isleep down stairs too I bought a fold away bed IN FACT IV GOT THE THEROPY people coming tomorrow to see what help I need You could be right what you say as your so young they may look at it as if they got to pay you a long time , were as if your older it's less time to pay I'm waiting my self for a pip result The way you describe your situation it seems you should be getting a lot of help Beast wishes to you

  • Such a pity Ernie that your experience of the pain clinic was so negative. I don't know about your one obviously but the one I went to certainly changed a few lives for the better. The advice they give is hard to follow,ow some times but it's good advice about pacing and exercising and trying stratagies like meditation to help with the emotional side of coping with pain.

    When there are no real answers to 'curing' Fibromyalgia and other chronic pain conditions and pain medication can only ever help a bit then these techniques and ideas are invaluable. I do wish you had got more from your sessions.

    Dee

  • Dussy90 , I'm in the US so I can't be much help with your situation but I fo wish you the very best with all that you need.Take care. Peck.🐤

  • Hi Dussy90

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your plight and I sincerely hope that your adult social services assessment goes really well for you.

    An OC is an 'Occupational Therapist.' This maybe who social services will send for your assessment. If they do you can talk to them about your mobility needs as well. They maybe able to help in that department also?

    I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Do you get DLA or PIP.if you do and you get mobility element that should help pay or pay toward a wheelchair.not saying it should but that's one option.if you don't get either have you applied for it.

    I'm looking to get a second hand mobility scooter and paying for it.the assessments are so stressful. bad enough having 11 different conditions therefore as I said buying one myself. my sister recently got one for £120.needed a bit of work but she said it now looks like new.hope you get something sorted

  • have you got in touch with a occupational therepist they come to you home to look how you manage stairs ect and ask you about bathing i got a stairlift n a disabled shower with seat free from the council a few mnths later its called housing adaptions run by your local council also gave 2 framed walkers a perching stool wheelchair toilet seat raisers bed raisers bed pully bar a lifting belt i really suggest that you try housing adaptions with your local council and also claim 4 pip im lucky i was ecepted and have a mobility car that my partner drives as for a mobility scooter i bought used 70 pound from paper iit fits in the boot of car and has given me so much more freedom as for walking sticks got to any mobility site and there is palm walking sticks that fit in your palm 4 comfort 10 pounds each i hope this helps you all the bestxx

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