What help can I ask for on the NHS????

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What help can I ask for on the NHS????

Postby poppy » Tue Jan 24, 2006 12:16 pm

I have just been diagnosed. I havent been back to the GP since and am a bit scared to. I think she wont be much help as I had to demand the referral, and eventually paid to go private, she is convinced it is all because I had depression 6 years ago.

I need to know if the pain clinics at hospitals will see fibromyalgia patients? Can I get access to OT help? I cant walk far and am struggling round the house. I have bought some gadgets for the kitchen that help and pay to have a hydrotherapy session weekly. However, I am now on statutory sick pay and we are really struggling to pay normal bills let alone embarking on more private treatment.
I have started an exercise programme but it is v slow going!!
I have no experience of how the NHS treats or doesnt treat this!!
Any info please! :?
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Postby kizzy » Tue Jan 24, 2006 2:50 pm

I would go to your nearest citizen advice bureau.

They will help you claim for disability living allowance and be able to put you in touch with organisations that can help fund/install adaptions in your home to make life a bit easier for you.

my doc kept putting my symptoms down to the fact i had depression 10 years ago!!!!
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find a new gp

Postby RebeccaReed » Mon Feb 13, 2006 11:34 pm

hi, only a thought, ive had this for about 15 years (or maybe it was depression) yes along with all the other people on this forum we all have the same response. I am actually currently seeing another consultant due to a kidney condition (not serious) but i have to say that ive noticed a huge difference in attitudes in the last 12 months. Go back to your GP and demand to see a specialist :D :D You will get there in the end i promise, i did pay to see my rhumy guy in 2004, got a diagnosis and poof nothing happened :lol: :lol: it eases your mind though (no your not going mad), good luck, ring your local hospital and find out if they have any Fibro specialists. Take care XX Rebecca
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expert patient

Postby Jane » Mon Feb 20, 2006 1:56 pm

My local NHS trust has an expert patient group for people with chronic conditions. I thought about going, but after 4 years I sort of know the aggravating factors and I was managing to work full time when I came across the details. Is there anyone out there who has been to one of these who can say if they are any good for people with FMS?
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Postby poppy » Mon Feb 20, 2006 3:54 pm

I know the pain clinic at my local hosp see people with FMS and are v good at dealing with chronic pain both physical and psychological sides. Its a 6 month wait though!
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Postby Looloo » Sat Mar 25, 2006 9:02 am

Hi Jane,

I have applied for the Expert Patients programme. However, although they are hopeful of getting it soon, they have no funding!! So this is our government or NHS Trust or whoever, they stand on their soapboxes a few years ago and offer these new 'ideas' for people like us to help each other and then won't allow the money for it. But watch this space! I am on the list so it may start soon, I will let you know.
A voice said unto me 'smile and be happy'
things could be worse'. So I smiled and was happy. And behold, things did get worse! lol Looloo
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Pain Clinics

Postby CarolH » Tue Sep 12, 2006 9:25 pm

Hi just rejoined so please excuse the delay on this topic! I live in Gloucestershire and have had FM for over 10 years. I did have help from the pain clinic and to be honest I found it very helpful. Only now looking back do I realise how much help they are. I was able to have acupuncture, see a pain specialist regarding medicines for pain relief and also see a counsellor. The councsellor was actually a Physcologist and she was very inspiring and to this day I am grateful for her input into helping me cope with the fibro everyday.

I have recently asked for a re- referrel to assess my medication but was told I would not be able to go back as they had done as much as they could for me!! True! But all I wanted was somebody to re-assess the medication as myGP only issues repeat prescriptions and I have been on the same meds for some time. At the end of the day we are still very much on our own so dont be afraid to speak out and keep asking questions. You know your own body even if you dont know how to help it!! ha ha

Hope this is of some help to you.

I am 46 years old and have FM for over 10 years . Winters are worse for me now (Must be age too). Try to keep positive but get upset at limitations FM puts on me and my life.
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