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Fibromyalgia Action UK
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No Doctors Letter for Benefit Claims

Just spoke to my Doctor about a letter to state my Disabiliites. For Benefits you are asked for details from your Fibromyalgia Specialist?, Osteoarthritis Specialist? Etc. There is no such person. I have had the 2 main Disabilities for about 18 years and been on physio way back in the past. They seem to think for 18 years you have physio and are under some Specialist! Mine is the Doctor who manages all my pain tale of and listens to how my Conditions have deteriated. I last had a bone operation in 2015 and was discharged.

My Doctor says they no longer write letters to say what your Disabilities are and what problems they cause you. I said "but you are the only person I come to, otherwise it's just my word". He said the Benefits people will write to him asking for details and then he will write back. That never happened last time and I had to Appeal twice (the Medical was full of mistakes?). They then sent me to Court but I was suicidal and had a breakdown and couldn't speak so couldn't attend. I had the decision overturned and received the Benefit. My Doctor said if they Don't ask him for a letter I can tell the Court! I can't face a Court. Isn't this all after the fact and too late.

Has anyone else had their Dr refuse to tell the Benefits about their Fibromyalgia in particular for their Medical. Most Doctors Don't understand Fibromyalgia so how would some random person doing your Medical have any clue?? Doctors are no longer writing letters for us. Also did they find someone else to write about Fibromyalgia and if no letters how did their Benefits claim go?o

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I think doctors are being asked to minimise people being referred to claim benefits due to the economic state of this country & the government want unemployment rates to fall its all related to politics and money

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I already have Benefits and retire in just over a year at age 66. Yes they are trying to stop you get benefits that's why my Medical last time was full of lies. Most can't cope with a Court case (I couldnt). The Doctor knows I already have Benefits, he was taking about Any letters.

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Seems any paperwork required benefits associated that doctors used to do are just fobbed off, when did you finish work officially?

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Years ago but couldn't get Benefits because had Savings from my Mums death (all SAVINGS gone now)

At 58 told my Pension age was to be 66 !! Lived off food parcels, charity from friends Tec as when I finally hot benefits they left me on £9.99 per week for 8 months though I sent details of my lack of Savings! M.P finally got it, ignored every other agency. M.P.s are going to no longer intervene on behalf of the Disabled and Benefits claims etc! They are trying to kill us off especially the 1950's ladies.

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That’s utterly disgraceful sounds like you have been to hell and back

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That about sums it up. X

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Wow, that’s absolutely disgusting to have done that to you. But they are making it harder and harder for the real ill people because of the scum that are amazing at playing the system.

My stepdad has just become my mums full time carer and as crazy as it sounds, when they got married in 2014, it was the worst thing they could have done. Because then things just went crazy with the benefits. I was paying towards their food, petrol, bills for about a year because of the mess the benefits system left them in. It’s absolutely disgusting. I don’t know how some of them sleep at night because I know I bloody don’t. They’re ruthless

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Thanks.

Yes being a Carer Isn't appreciated and not even paid for properly. I was my Mums Carer too, when I could still work. I got about 4 hours sleep a night (My Mum had Dementia) then got her all ready for a paid Carer coming in (The Family paid out of Mums money). I worked as a Carer for the Elderly for a few hours part time in the mornings. Didn't claim anything but holding down a job too nearly killed me! The Government Should pay Carers a decent wage to look after Relatives. Your Mum should have a well paid Carer who is not stressed over money. Being a Carer is hard enough anyway. You Shouldn't have been put in the situation to end up helping them. The Government get away with doing what they want and are a law to themselves.

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People playing the system are very few. The govt would have you believe they are many. Thus justifying this cruel system where companies make millions while poor and disabled people's lives are ruined. Don't fall for the rhetoric. Most are folks like you and your parents. They paid in to get treated like criminals for daring to make use of the safety net benefits when in need.

We that have experienced this system need to stick together and not pick holes in 'others' that we fear are bad.

Not judging, just mentioning it cos too many of us already feel judged by society and feel like we are veiwed and treated like sciving scum (and that is bad for our mental health.) and as GPS won't help we have no way of proving we are not. Listened to lady Gaga talking about kindness and how we need to beware of outside forces seeking to divide us and stop us caring. We all want to give and receive kindness but fear makes us act against our true nature. See how lovely n kind folk are here? That is how folks naturally are useless they are manipulated to see folks as not like us and a threat. Stay kind😘

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You are entitled to your medical records now for free if that helps

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Thanks, yes that seems the only answer but still I have no one to explain things like difficulty in walking etc

Guess they won't have the full picture of how my Fibromyalgia affects my life from anyone. Thanks for.your advice.

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I had my assessment yesterday. I went on crutches and behaved as if it was my worst day I suppose that’s all you can do?

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Yes the day after my Operation I went for Pips assessment and got it but not for ESA. I turned up well dressed and found my way there according to that Medical! Obviously that means I have no Disabilities then! Will get a taxi next time and leave my pyjamas on as I pain and can't reach well to dress! Should I go the whole hog and leave slippers on too?

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Free? I was told £50!! And then after MONTHS of phaffing, my notes were finally produced, with much missing, making the exercise somewhat futile. I felt someone or someones, had spent many hours reading and editing out what was acceptable for me. The DWP, on an FOI have produced info/test results that my surgery didn't let me have. (bad DWP?) Does that not make one worry? (certainly made me wonder why send confidential info that I'm unaware of, to DWP when I don't know about it?)

The upside, after so long and possibly knowing they had withheld so much, They didn't charge me. Yay?

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Yes your entitled to your medical records for free now. You can request them complete or certain parts

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mm good to know. since when? My request was only this summer.

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Hi

Yes that's correct its all to do with new NHS guidelines thay are also no longer doing letters to say you are entitled to Disabled bus pass or companion pass.

DWP unfortunately are braking no rules when not requesting information from Medical Professionals .

It states if we need further information we will contact GP or Specialist and if thay do thay send them a form to complete and thay pay for this .

You are better to put down Care Manager ,CPN or Support Worker as often these are the ones that thay telephone for further information

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I know but no one except my Doctor in involved in my Disabilities. The Doctorseems to think they have to ask him but like you say it's more if they are bothered about getting more information!

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Spot on info. Thanks for this.

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Hi kingdom it is not good when you hear this it id down to personal choice with surgerys and gp i know lots who get told the same as you and lots where doctor writes tremendous letter .a lot of docs in our area are giveing a computer printout there and then that helps .do put on form where asks a profession to contact who ever that is the .say I would like you to contact this person for more information if you need anymore anyone I know put doc or hospital specialist. You can get 2or 3 letters for whoever helps as well carer family or support worker if you have one .some people have their family for that their preference and some docs and mental health team prefer that as well

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Thanks. No one seems to understand Fibromyalgia. Have no Nurse or professional who advises on it only the Doctor.He just told me not to go to the Pain Clinic as he would control the Pain (have 11 tablets of 3 different types). I also go to him with all my different symptoms. They ask for letters from people like him.They probably consider Relatives would not write the truth. Only a printout of all the visits to the Doctor would help but even that doesn't say what All the symptoms are and what problems they cause. Thanks though

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I you are right and it is not right .some docs miss the point and are not good with fybromyligia. even at the pain clinic you get courses and tools to reduce doctors visits and meds too doc misses the point .Hope everything goes ok for you

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Thank you.

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Hi Ajay575 can i ask what you mean by a print out ? Is a print out a printed version of gp visits and diagnoses ? Like dates attended gp and reasons why etc are these the printed notes you mean ?...thank you xx

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Hi know it was just lately I know people who asked doc and doc say it was waste of time and do not do it but will give you a print out and that is just the same and doc printed out their and then all your appointments etc and printed out a large sheet and theygot sent .I'm not 100 % sure wot else was on it I know someone who I am seeing later who got it I will ask him wot was all on it

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Ok thanks, its just that I got something like that one of gps printed out, and it did have diagnoses on it and some other things, like operations, medication, reasons I visited appointments etc, not every single appointment just the most recent in the month I think, but it did show diagnoses, dating back to 1999, and there was also a diagnoses on it from 1980 when I was just 5, and I've got that here and didn't send it in with my form didn't really know if it would be use full because of the other things written on it i.e....appointment reasons, anti biotic for illnesses etc, but it did have diagnoses dating far back on it I thought may of been use full but thought its gone too far back to a child age of 5 so didn't think it wouldn be relevant altho that diagnoses is a mental health illness i suffered so it maynof helped towards my mental health illnesses I've suffered as an adult....what do you think ?...,thank you xx

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I think it will be that provaly rhe same it should help you deffenitly and the mental health shoukd be fine when they read your forms .and they will know you get 1 effecting the other mental health and physical ad the 2 do not go hand in hand and effect each other you should be fine hopefulky

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Ok so no point sending it in now then i did think maybe not useful at this time with it being a childhood mental health illness. I didnt even know i was diagnosed as a child thought i was first diagnosed as an adult in 1999 oh well its here if i ever do need to send it in thats if its the kind of notes worth sending...thank you Ajay575 xx

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Is up to your self I would send it in if it is a reiview .if first application hand in at f2f

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Oh ok so it ve worth sending in then...yes it is a review...i didnt have these notes on first application and i sent my form off yesterday tho...i didnt even think to use these notes tbh ...ahh thank you xx

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Yeh do send it in it (recoreded delivery)it could help them sway it in your favour so you do not get a f2f

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Oh ok il try get it sent tomorrow with a note to ask them to add to my form i think its atos i suppose to send im sure i seen this on the prepaid envelope...ahh thanks xx

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Good luck .put name and n.i. number on a bit paper and top of print out thats how they identify people incase it gets lost

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Ahh will do ...thank u so mucn Ajay575 xx

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What about pain clinic Dr?

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Thanks but I asked the Doctor but he said he could do the same. I'm on 11 tablets (3 different types), so no pain clinic. I go to him with all my symptoms too.

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I read recently about letters the DWP wrote to some GP surgerys, advising them not to issue fit notes to claimants who have failed a Health Assessment .They purposely omitted on these letters that fit notes should be issued if claimants are appealing their assessment

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☹ yes not fair.

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Kingdom1914 Yes I had this, in all fairness he was new as unfortunately I had just moved house when I had to apply for PIP.My doctor of 3O years had retired. The new doctor believes in Fibromyalgia but he said that whatever he put he had no influence over the decision like he did when it was DLA. He said he had patients confined to a wheelchair who ended up at tribunal and be prepared to have to attend. He said he was now rarely asked by the DWP for any information. The specialist I saw at the pain clinic also retired and his clinic disbanded so I can honestly say I felt that the world had conspired against me so you have my sympathy.

In the end in desperation I printed off information from the Patients Access and unlike what they said about not wanting appointment cards etc I explained situation and showed details of letters from the physio department etc appointment cards for acupuncture so they could see K was doing everything I could to help myself.

If you have had no specific treatments for the last few years perhaps you could list things that you had tried in the past and why they did t work, drugs you had tried and why they didn't work!. Send a copy of the green and white repeat prescription form to prove what meds you are on.

All I can say is good luck.x

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Thanks. Had pain injections for Osteo Arthritus. For Fibromyalgia I had Physio but that was a few years ago and they leave you with a book of exercises. It's difficult because they expect you to have a permanent Physio or suddenly your Disability goes with physio!! Pain injections would have to be all over your Body for Fibro so it's just tablets. Thank you for the other information though. X

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I'm going to ask my adult services worker for one and see what she says

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Should work, but if we rely on Doctors as our only means of information for the Medical or Benefits people we be had it now.

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The DWP very rarely contact your GP for any information - although many GP's think that they still do, like they did when it was DLA, but that has all changed now with the introduction of PIP. The onus is now on the claimant to gather as much information as possible. A bit hard when you don't have any information and your GP won't write a letter supporting you - but even people who do have a good GP who will write a good supporting letter are being turned down. It's a difficult situation.

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I thought its the Health Assessment companies who should get this information from your GP if needed and not the DWP. I done a complaint about my assessment and it was only while my complaint was being dealt with, my GP was wrote to by Maximus. The way i found out this was on my on line Patient Access I saw my GP was contacted by a third party. I asked my GP, Why a third party was asking for my medical report? All she would. tell me was it was a private company who carry on Health Assessments on behalf of the DWP. She would not tell me no more that that. Anyway what ever she told them i got an apology from Maximus shortly after.

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It's the Benefits people when you fill in the claim. I took all my Medical details to the Medical too. The company that did the Medical lied about what I said and Didn't understand my Disabilities anyway. They were told to refuse most of tge applicants for Benefit (think it was 75%?). So it must have been my turn to be refused. So don't rely on them. That lead to 2 Appeals which were to the Benefits people (ESA) I sent lots of Medical stuff and listed the 10 errors on my Medical they filled on (you can ask for it). They turned it down and sent me to Court. I was too ill to attend but sent everything plus the Medical through to them and won the case. Cost me a Fortune in Copies and Recorded Delivery etc. Most people give up and I felt like it but knew they were just trying not to pay me.

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In my case Assessor wrote down all Medicine wrong and even omitted some and i had medicine with me with a print out from Patient Access. I give you one example I take Tramadol as prescribed two ,four times a day when required. Assessor wrote, Tramadol normal dose daily. Also 3 days before my Assessment I could barely walk with Gout and my GP gave me a high dose of Prednisone [steroid] . Tramadol is not effective for my Gout attacks.I had this information at Assessment.Assessor wrote walked to room even though i was using cruches as i had no weight bearing on one side and proof from my GP only 3 days before Assessment I showed all this at my Assessment but it was ignored by Assessor. I think that why they contacted my GP when I complained and found out the Assessor was not telling the truth ,they had to give me an apology

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😦 Crazy.

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😦 Fibromyalgia is such an unknown Disability too so they don't believe your symptoms. Doctors still think they will be contacted, not in the real world I'm afraid.

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Hi kingdom our local small advice shop .instead of fybromyligia on forms they put down a few times SEVERE WIDESPRESD PAIN. CHRONIC . LONG TERM .and they do say they look for (LONG TERM) and if you have anxiety they put DISORDER at the end .it does work .if dwp contact gp then they can get the word fybromyligia from them

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Thanks. Never heard of an Advice Centre?

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Yeh you get it in small areas. it is a bit like cab but very small and volunteers and charity funded similar to money advice centre .they are closing down a lot not now not many left cutbacks and no money.there is only 2 workers and volunters and cafe and community wellbeing teams meet there for tea etc like a drop in centre.the good thing about them they do go to town with dwp and are hands on and look for ways for you will be missed when it does close down eventually

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Sounds brilliant! I live near Manchester and none here. We had a Disability place on the local Library but closed down about 6 months ago.

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That would have been similar maybe .they moved to a hut and cafe now as well and have all the info for free bus pass leisure pass disabled pass etc .you do and should get theses at libraries as well

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Hi,

Yeah I was in the same position and I also had a breakdown due to the stress of everything. I’m so sorry to hear that you’ve been through this too because stressful is an understatement. And like you, what specialists?! I certainly don’t have any either. Instead they’ve doped me up so much that I can’t even leave the house anymore.

In the end, I managed to get a home visit which was so much easier. She was lovely and could see straightaway I couldn’t work. I could barely walk or look after myself. After that there was no mention of a Drs letter. And you’re completely right, most Drs don’t believe in fibro let alone understand it. And the people who do the assessment have no medical training as far as I was told.

I think the fact that I had a home visit made all the difference. Because she was taking notes mentally from the minute she walked through the door and my stairs are very steep and that’s one of the first things she said about the stairs being dangerous in my condition. So I really liked her and she signed me off straightaway and she managed to get it back paid for the last 18 months.

I don’t know if this helps but I think the more info we all share the better.

Take care hon

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Thanks for your experience. It's good you got an understanding lady, not many around. I take 11 tablets a day and although they help pain they too wipe you out, as well as the Fibro.

You Take Care too.

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On the benefits and work website there are forms you can print off for your dr to fill, could you try this instead? Maybe give him one filled in by you as a template? Could you try taking it above his head to the practice manager? My dr did me a letter requesting a home visit as it would be too hard for me to attend an assessment centre due to pain and anxiety. I was refused the home visit, I paid for the dr’s letter. X

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Interesting. My Doctor wouldn't do a letter whether paid or not so can't imagine he will do the same via a form though?

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Hi. I didn’t send in gp letter or specialist letter. The assessor seemed to concentrate on the meds I was taking to support what I was saying. Go to the benefits and work website for detailed information about how to phrase your answers. That is very important. There are certain keywords or descriptors that they look for in your application. There’s a lot you can do if you ask the people on that site how to structure your answers etc. I do have specialists but it’s my gp who deals with my meds now. There is hope for you Kingdom. The website is brilliant and will help you. X

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Thanks for your help.

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Hi, yes recently my doctor said he wasn't able to do a letter for me. He just told me what to put on my UC50 form. I know what you mean about the tribunals, court etc. I went to ne tribunal, but I vowed never to go to another, They said my hand eye Co ordination was ok, as I had lipstick on and did my nails!! I am waiting to hear about the disability premium of universal credit, but I don't hold out much hope!

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Terrible! Hope you have sucess. My Medical said "she was dressed nicely and found her way here". Obviously we are fit and well then!

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Rubbish I have had 2 separate letters by 2 different Drs The first charged me £80 the 2nd did it for nothing so I bought her a large bunch of flowers. It really depends on the Dr

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That's Terrible then! I got a letter 3years ago but now my Surgery are writing No letters paid or not unless requested by the Benefits people. Obviously they don't want you to get the Benefit anyway. You are just lucky as Doctors have been advised not to write letters.

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As I said it really depends on the Dr I find it strange that they say on the form you can submit Drs letters providing it is about your illnesses and not a support letter !!

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Do you mean support letters from other Medical people etc or Relatives. If Relatives are your Carers I understand the relevance of That, they would accept it. If you live alone and a Family member who doesn't come round to you would not know about your everyday problems and could just back up what you say. I don't see them believing that. The form is talking about those who are directly involved with your care and Disabilities from what I gathered or why ask for letters from Health Officials. I've just remembered that at the Medical they said it's purely on what the Interviewer says plus Medical people But Doctors letters aren't relevant. Oh No that's even Worse!

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Support letters from Medical personell ie Drs nurses health workers etc etc

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As I said None of the above. That is tge problem.You are the only person I've heard of that has got a Doctors Letter recently. I could borrow the £80, (65 years old not Retirement till 66 and on Disabled Benefit). Where should we all move too??

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Calm down If YOUR Dr is not doing your letter then it is not my fault I told you what had happened to me regarding the letter writing if that makes you upset then that is not my problem.

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Weird ?????

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I have always asked any specialist that I see to CC me in all letters regarding my many conditions. These all are scanned and filed away for when ever I need them. I am one of 7000 in the UK that also have Pulmonary Atrial Hypertension! Which even well educated Doctors look at you with a glazed look sometimes?

I have found by doing this, adding all the info I have had not so many problems!

Be Well

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Hi that is a good idea I wish they would all send a copy after appointments mines just sends to Dr (rumatology) sometimes that is all the dwp want everything to corospond

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If you ask they have to send one to you too! GP's seem to be a law unto themselves now.

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😦

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No Rhuematoragest I'm afraid just Dr. Perhaps I should ask to be referred, I asked about Pain Clinic and he said he could deal with that at the Surgery.

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Yeh it is a pity about the pain clinic some doctors are or used to work on pain maybe yours is one of them and doc starting from scratch with add ons meds .pain clinic do that I would wait and see if doc gets things under controll .it can take years to get right meds and balance did with me .the esa and pip it is harder but know lots who do get it without hospital letters and had no problems

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Yes I have them from 2015 when I went to Court but my Disabilities have gone much worse.

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Hi Kingdom1914 just to say im sorry to hear this its a really difficult situation when been in illhealth for a long time and no other updated medical report can be retrieved its as if the dwp think we have miraculously recovered after all the years have passed...i wonder if you could get a second opinion from an alternative gp i understand you see the same gp but another gp can listen more to situation and go by your medical file too. . I was seeing a certain gp for a long time coz she advised me to stick with 1 to form a relationship her words not mine to get to know me properly and my problems so i did this with her shes not the one who diagnosed me but when in the long run she seemed to of gotten a little frustrated with me and made me feel uncomfortable so i went back to the original gp who diagnosed me many years before but i hadnt seen him in a long time but turned out it was the best decision id made voz hes the only one who actually listened and cared and helped an he actually wrote me a perfect letter of support so i just wonder if maybe its worth visiting another gp and explain everythin and see if that helps in retrieving some kind of updated report on yr illhealth...just a thought...Good luck 🍀 xx

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Thanks but this was the Doctor I changed to because he seemed to have some understanding of the different problems associated with Fibromyalgia! I do feel when you mention Fibro normally they raise their eyebrows and just give out what they normally prescribe not putting it down to Fibro. Few Drs understand it.

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Hi kingdom you can ask for a printout of your medical visits (file)with all the information no charge a lot of docs giving that out now .are you pip

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Thanks. I should be on a higher PIP but can't cope with going through it again. I was trying to get a Blue Badge but almost impossible without a higher PIP status (Mobility). Expecting a ESA review soon though. Yes a print out is the last resort, thanks will do that. Just hope he actually wrote down what problems I was having with Fibro. That tend to listen and not write as you explain. Thanks for all your Help.

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I had to provide more details for a review to receive the NDIS in Australia. My GP was reluctant to write a letter even after I presented him with a report that I wrote detailing my conditions and how they affected my life on a day to day basis. But he relented and asked if he could use my report. I left it with him and he used it in his report. I think it's a time issue for the GP. It took me a couple of hours to write up the report and no GP really knows the fine details of how our lives are affected unless they are willing to give a patient the time needed and willing to listen. I think my GP has a very limited understanding of fibromyalgia and chronic fatigue and has no idea how to treat it. For example he knows if I exercise I end up with a flare up that leaves me bed bound for weeks yet he advises me to exercise while agreeing with me it causes flare ups when I remind him. I have to do my own research and try different things until I find what works for me and what doesn't. Fibromyalgia treatment is in the dark ages.

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Hi I have a great doctor maybe change your doctor some are more understanding than others..

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After so long I have to ask myself who diagnose you with fibromyalgia?

If I was you I would be asking to be referred to a specialist who can confirm your diagnosis, there is plenty of them about now, then you have a full back up, I think that's the only way.

When I went for my PiP my letters appointments treatments I had had were only 12 months old and was asked for more up to date reference.

I was lucky or you could call it unlucky I had been in hospital several times and my doctor did write a letter she had no problem with it at all cost me £15 but at least I got one.

Having said that with all I had gone through I still lost the full rate of PiP my car and a lot of money.

I have now got cancer and still refused full PiP as I will hopefully live, but I can tell you these past 12 months have been very hard and I have another 2 years of treatment to go.

So wishing you all the best but go see a specialist your doctor can not refuse to do this, especially if you have never seen one.

Xxx

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Ps read benifit rules and regulations 29/35 that's what they were when we needed them.

It states that if your disability makes you a dangerous to anyone at work or yourself.

We used this when my husband was diagnosed with CFS and had funny heads couldn't concentrate and so weak he kept passing out at work, they told us he was fit or work, but we found these rules on there own web site,

So he got ESAS but that was it from £450 a week wage to £99.10 a week.

Can't get and PiP nothing more, obviously it's £122.50 now we have had to cut back so much, just about manage bare min internment and phone no Tv nothing.

I hope reading through there own rules you might find a rule to help you.

I still think seeing a specialist your best option

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