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Fibromyalgia Action UK
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DLA

I had my DLA appeal. I've got fibrimyalgia, chronic fatigue syndrome, fibrodysplasia and bilateral ovarian cysts. I lost the appeal. Is there anywhere I can go for any help. Please email me suemiller59@hotmail.com

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Oh I am so so sorry to hear that. I do not have any answers or way to suggest help, but just wanted to say I hope things get better. the system is very unfair for sure!! Good luck xx

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thanks

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Hi. I thought I did have a good case, all my consultants' reports, rheumatologists, gynaecologists and orthopaedic consultant, the assessment done by the jon centre, the assessment done by community care - everything. I also took the person who helps me each week - but still nothing. I am tired of fighting, but know I need to fight everyone and everyday. I went to the CAB but they couldn't help me, I went to the local DIAL (no help), I went to the local disabled benefit person (still no help). They said I don't meet any of the criteria on mobility (even though I use two crutches to walk everywhere) and I don't meet any of the criteria on the care part. I was devastated.

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No one to help not enough staff, also no one qualified to help.

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I'm with Christine on this. Try to keep battling on and if you can get into another CAB office there could be someone else who can help you. Is there anyone who can help you battle by making phone calls etc on your behalf? Even if you can get some phone help with someone at a CAB office miles away that could be very beneficial. Good luck!

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I went to the CAB on 30 January 2012. The receptionist said they just didn't have the qualified people anymore at all. I don't drive at the moment due to the medication and the nearest CAB is three hour away on four busses. Living in London all my friends have driving licences but don't drive or don't have cars. As one wall falls another builds up with the rubble. I am usually very optimistic about life but with each day the optimism decreases. All my friends and family are 280 miles away from me in Manchester, so when I became ill and the doc’s took away my car well gave me medication to take away the pain, I lost my independence and my chance to visit Manchester every other week.

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I'm signed up with benefitsandwork.co.uk/ who have probably the most excellent advice and resources you can get on the internet in relation to benefits. They're also a VERY strong campaign site, giving you all the latest inside information. Their forums in particular area mindfield of information, ideas and support.

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I am signed up with benefit and work already have been since early 2011

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Have you found it much help?

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I've found a few things helpful but most od the time I would like a person to talk to not just an email. I find the websites fantastic for loading banks of infor mation that I can go back and lokk at, but a voice to answer questions in real time helps more. So I feel the benefits and work have been about 20% helpful.

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If you have a supportive medical team it may be well worth applying for the higher rate in carers and mobility allowance, I was very skeptical that I may lose all if I apply for the higher rate but my GP said he would'nt let that happen I was diagnosed officially at the cfs unit at the Maudsley London's Kings College Hospital , I also have osteoarthritis and find it dificult getting around withe cramps of fbs .( the good news was I did'nt get a medical visit and was awarded the full DLA ).

But having said that pls find someone who is an expert on helping you to fill out the forms and how you feel at your worst on your bad days since your good days are few and far between usually health care charities or social workers

By the way the full rate of carers allowance is apx £55 plus mobility adds up to 125£ gbp pw plus the benefits of a blue badge free rd tax & a freedom pass for public transport from your local council

Again wishing you all the best xx

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HI philip

My doctors are not supportive at all, when they originally completed the form for DLA they couldn't be bothered completing it. In on box which said explain fully the disability and how it affects the person, my doc put 'YES', when I confronted her she said quote 'I decided what I put on the forms not you'. I guess us in Ilford get a rubbish deal when it come to medical help. I am double incontinent and I've had to track help down myself, I've had to organise my own physio, I had to organise my own community care... without ANY help from any of my doctors. I am on waiting lists at three other doctors in travelling distance as they have no pleaces available for me as a patient. I was turned down for the freedom pass - not disabled enough and for the taxi scheme from city hall - not disabled enough (FM, CFS, fibrous dyplaisia, bilateral ovarian cysts and RA - not disabled enough).

But thanx for the support x

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I am very sorry to hear that, it's absoloutley disgusting I hope really very soon you manage to get a more sympathetic practice and Dr, I live in Thamesmead central in the Greenwich Borough and sometimes I wish I could move but because I have such a good medical team I'm afraid to move incase I end up in a similar situation as yourself, I watched Thamesmead transform in the last ten years dramatically and even though it's a preety area some locals are intolerable but b'cos of the medical team I have I can't afford to move I also suffer from s.a.d.s and therefore would love to be able to spend more time abroad esp in the winter months I've felt suicidal with the pain and sads this winter not being able to get away But if you need any help or would like some help in writing up or copying my DLA forms let me know since at least we have FM in common xx

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hi Tibby i had a similar problem i was lucky i nad my husbands help my gp also filled in my report with one word awnsers my huby cotacted the head dr who agreed it was not right and wrote a letter supporting my case and the decision was reversed it might be worth a tryalso my surgery put me in touch with an organisation called porchlight they help to liase between you gps and the dwp much better than cab ask at your gp surgery they may have a scheme like this wish you lots of luck

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