Why are Dr's scared to diagnose FM

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Why are Dr's scared to diagnose FM

Postby Cliff Evans » Sat Feb 18, 2012 4:12 pm

I have had FM for the last 14 months, I was sent to see a specialist by my GP who, in the consultation stated that he thought that it may be FM, yet, in his letter to my GP did not mention FM at all. I had to stop work 14 months ago (Painting and Decorating) as the pain became totally unbearable, and still is. over the last 14 months, I have been tried on various pain killers, none of which has worked to the point of feeling like a guinea pig. I have now spent all of my savings on living as I have been unable to claim anything as I had not been signed off and had not been given a diagnosis. Last Monday I went to the Dr's and was given an emergency appointment with the duty GP as my Dr was off sick. I told the duty GP that I was feeling quite down and that this had been going on for 14 months and that I was finally out of savings. She said to me, "well looking at your notes it would seem that we have tried everything we can, I had better sign you off." She signed me off for three months and put FM on the form and said, "That should help you get some money". I was made to feel quite bad about this visit and really don't care for the Dr's very much anymore! As the title states, The medical profession seems scared to diagnose this condition, this is very unfair on sufferers, especially when they are made to feel bad because they ask for a diagnosis.
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Re: Why are Dr's scared to diagnose FM

Postby loubie » Sat Feb 18, 2012 5:07 pm

hello cliff :wave:

welcome to the forum :-D
i think the doc's are scared of us :yikes: they can't make us well again and that is
the job they do making people well, we walk in and they just don't know what to give us
so to them they have failed in the job they do :roll:

hope that makes sense i am a little :crazy: today :lol:

good to have you with us and hope you find some helpful things on here :wave:
loubie xx

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Re: Why are Dr's scared to diagnose FM

Postby FluppyPuffy » Sat Feb 18, 2012 5:19 pm

:welcome: to the forum Cliff :bear-dancing: :bear-dancing: Sorry to hear what you've been going thru to try and get a diagnosis :facepalm: :facepalm: I'm with loubie where some doctors are concerned. Because we don't neatly fit into a little box with a condition that can be treated and cured, they don't quite know what to do with us :facepalm: :facepalm: :facepalm: Maybe if they chopped us all up, put the different bits of us in different boxes and shook us, when we were put back together, we might have a better chance of things improving for us :clap: :clap: :clap:

Anything you want to know about, ask away and we'll see how we can help you with it :wave: :wave: :wave:
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Re: Why are Dr's scared to diagnose FM

Postby 2steps » Sat Feb 18, 2012 5:54 pm

I get the impression if they give your condition a name it will validate it, so lets pretend (26 yrs ago) it's just your age, it's just you, go away and don't bother me.

Even 3 years ago occ Health would not name my condition(but described it as a biophsycosocial condition) till my consultant put it in a letter. My GP's are clueless they must dread my appointments I swear I can smell garlic in the room and the cross on the wall is for me. :twisted:

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Re: Why are Dr's scared to diagnose FM

Postby Roseofsharon » Sat Feb 18, 2012 6:50 pm

With People like Mr liddle making negative comments in the press everyday I think that they are scared that if they put FM down on paper that they will be pulled into this negative slurry. Better keep people like us without a diagnosis then the negative slurry can continue without the spotlight being turned on the doctors and why so many doctors are not giving us the help that we truly need (i.e. carers to come in a help us with the house and/or make us proper meals. Equipment that is so expensive that most of us cannot actually afford it ourselves etc). Oh and lets not forget that they don't know what causes our problems, and so we go on day after day week after week landing in the GP's when we're at our lowest and carrying on the rest of the days.

It would do the doctors good that while in training, they have to spend a week living the life of one their patients with one of these 'hidden' disabilities. Come to think of it may be the DWP as well. I wonder then if they would be slow in helping us when we ask for the help (whatever it is).
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Re: Why are Dr's scared to diagnose FM

Postby Ldyalb » Sat Feb 18, 2012 9:47 pm

I think a lot of it is because they can't cure Fibro so we don't fit into the traditional view of medicine that people have i.e. you get sick, Dr gives you tablets, you get better.

People generally don't seem to 'get' the idea that people can be ill, and remain ill - they might not die from that illness, but they don't recover either. I'm still getting 'you're still ill?' responses from friends asking me how I am. It's as though now it's been almost 2 years I should either be dead or cured. Even though lots of illnesses are the same, Lupus, Arthritis, ME etc - all chronic, all incurable - the best you can hope for is good management of symptoms and as many flare free times as possible. And I think some Drs think the same way, some want to help as much as possible, others just think 'all we can do is give painkillers so why bother trying to do more?'.

But also, as Fibro is hard to diagnose, I think that scares Drs off. They don't want to say 'oh it's Fibro' only to find out a year later that you're severely ill with Lupus or something else which has similar symptoms. I know they call Lupus the 'disease with a 1000 faces' as it's so hard to diagnose but in a way most Rheumatic conditions have a similar problem - the symptoms of early arthritis, of ME, of Lupus, Sjogren's, MS etc have a lot of overlap - so it takes a while to know for sure what the cause is.

But I don't think the Scrounger Rhetoric helps. I do think there must be some Drs out there thinking 'hmm, are they just after a 'label' so they can try and claim DLA etc?' It all depends on who you see.

I've been pretty lucky with all my main problems (Dyspraxia, Fibro and Hypermobility), the latter and former were both diagnosed 21 and 22 years after I was born with them, but once I knew I had them I had a diagnosis within 2 months max. But all of this was in London, which was a help as I had a wide choice of GPs to see, Hospitals to choose from etc. Unfortunately healthcare in this country remains a postcode lottery and the medical treatment in my current surgery of 4 Drs in a small rural village is nothing like my 14 Dr surgery in London.

My Grandmother in North Wales has Fibro, she said her GP wouldn't refer her to a Rheumatologist for treatment as 'no Rheumatologist in the area will accept Fibromyalgia patients, they're too busy'. Whereas I received a Choose and Book letter today for my 3rd Rheumy in less than 2 years of having Fibro. My Grandmother's had Fibro since she was 17. She's now 72 and hasn't ever had a Rheumatologist. Big difference in treatment!
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Re: Why are Dr's scared to diagnose FM

Postby Roseofsharon » Sun Feb 19, 2012 12:48 am

Ldyalb wrote:I've been pretty lucky with all my main problems (Dyspraxia, Fibro and Hypermobility), the latter and former were both diagnosed 21 and 22 years after I was born with them, but once I knew I had them I had a diagnosis within 2 months max. But all of this was in London, which was a help as I had a wide choice of GPs to see, Hospitals to choose from etc. Unfortunately healthcare in this country remains a postcode lottery and the medical treatment in my current surgery of 4 Drs in a small rural village is nothing like my 14 Dr surgery in London.

My Grandmother in North Wales has Fibro, she said her GP wouldn't refer her to a Rheumatologist for treatment as 'no Rheumatologist in the area will accept Fibromyalgia patients, they're too busy'. Whereas I received a Choose and Book letter today for my 3rd Rheumy in less than 2 years of having Fibro. My Grandmother's had Fibro since she was 17. She's now 72 and hasn't ever had a Rheumatologist. Big difference in treatment!


Wow there's something wrong in that! 14 doctors in one London surgery?! I don't remember that many in my London doctors when I was there. I was based in the outskirts of London when I was there. My doctor's surgery, now, that is only just outside of London only has four to choose from, that is unless I go across town, and then it's a maybe that I will see a different doctor to those four (my surgery has two surgery's under one name, the doc's share their time between the two), but that seems to be standard down here. Having said that I have found one very good one in the surgery that if I had to leave that surgery now I would be very upset, as he's really done well by me. When I had to wait for my Rheumy I had to wait about three months (if I remember correctly) because of how over booked the Rheumy was so I can understand how your grandmother feels, and how over booked they get. Remember that they don't just deal with Fibro, or Lupus, but they have such a wide group of ailments under their care, that even my Rheumy discharged me as soon as she could (last September).

I think this postcode lottery has actually been in the press so much in relation to cancer treatment, and the prejudice about people like us who are truly disabled with hidden disabilities is so high (I am one of four kids, and I know the ignorance in my family about hidden disabilities is very high. My sister in particular just thinks that I would be better if I just exercised the same exercise as she does - which btw is Zumba and is way to high impact for me :( ) that the papers are just not interested in running sympathetic articles. As is Proved by the fact that Rod Liddle managers to still have a job after his obnoxious and ignorant articles about us. The papers have no selling power in us except to ridicule and make it harder and harder for genuine claimants to acctually get the benefits that were designed to make their lives easier, and puts the wind up the doctors to actually diagnose use. I have been told repeatedly by my doctors recerntly when I needed them to sign something or write a letter for me, that they have to be able to defend everything they sign or write. They seem to be getting more and more scared of being sued or otherwise investigated about why they are doing or saying X or Y. It's a horrible world for our doctors.

I have every sympathy for the doctors as I am both an EX SJA member and a Holistic Therapist (non practising, cannot anymore sadly, FM took that away from me :cry: ), you have to cross every t and dot every I, and defend every decision you make. Even then you have to cross everything that can be crossed and Pray as hard as you can that nothing goes wrong and you get sued. My professional insurance for Holistic Therapies was in the millions (not what it cost, but the amount I was insured for) just in case one of my clients decided to sue me. I had to be on the top of my game so as to be able to defend myself if anyone sued. That is without the paperwork that was filled out about every person I treated while I was a member of SJA. The Doctors sadly are in an even more responsible position than I was. It is no wonder that if the doctors have any shade of doubt about a diagnosis or whether the person they are treating is fit for work that they are not willing to give a flat Yes. I know this is frustrating for us (goodness knows I went through enough before diagnosis), but they have to be so careful nowadays that they are holding back more than their counterparts of our grandmothers or great grandmothers. In so many ways they are so much more answerable for their decisions. Was a time when the doctors word was trusted implicitly, not so nowadays. Everything that everybody has said is valid, but I would ask you to put yourself in the position of your doctor in your mind, your every move and thought almost at risk of being challenged and sued.
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Re: Why are Dr's scared to diagnose FM

Postby difly » Sun Feb 19, 2012 1:22 am

Hi cliff had near enough similar experience with docs took three years to get a diagnosis its so unfair that you had to use your savings to live on when you had paid into your insurance and taxs , so you shouldnt feel bad !!!! .surely they could of diagnosed you with stress and associated conditions given the struggle you were faced with ,while they were assessing your condition ??? I think its more than just being careful about the diagnosis its also a lack of specialism in the area of fibro ,keep strong and take care xxx
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Re: Why are Dr's scared to diagnose FM

Postby denys » Sun Feb 19, 2012 7:31 pm

Lydalb there are a number of Rhuematologists in the North West who not only accept FM patients but are quite specialt in the condition.

Especially in Chester, so i think your Grandmother may have been fibbed to by her docs:crazy: :crazy: :crazy: :crazy:
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Re: Why are Dr's scared to diagnose FM

Postby Ldyalb » Sun Feb 19, 2012 9:04 pm

My Grandmother is in Holyhead - I think it's closer to Dublin which is about an hour by ferry than Chester which is 3 hours away lol.

And this was in 1992 so there may not have been any Rheumatologists willing to see her then but she said that whenever she's asked since she's been brushed off with the 'they're too busy to see Fibro patients' line.
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Re: Why are Dr's scared to diagnose FM

Postby tentimes » Thu Feb 23, 2012 5:04 pm

I think sometimes it is helpful to ask for a re-referral to a consultant. They will find that very hard to refuse and would have to justify it in the notes. My experience is they will re-refer you. From there on it is much more likely that you will get your diagnosis one way or the other.

I have asked to be re-referred a couple of times, and it was taken pretty well by the GP. I just said that I wanted more help in dealing with the pain of it and had found the consultant very helpful in the past - from her perspective it was one less problem probably.

When I got my diagnosis it was out of the blue and I knew nothing about Fibromyalgia. I wasn't very happy about it to be honest. In retrospect though, I wish I had got to the Rheumatologist quicker, it would have saved me a lot of money, got me better pain relief, and stopped my GP looking at me as if I was some sort of mystery that The Gods had had the cheek to put in front of her.

I've worked for several GP's for a 5 year period about 10 years ago and I have to say it did not improve my opinion of them in general. The odd one wants to listen, but most of them have had enough in my experience, and are too quick to judge.
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