my faith in the U.K. medical community has hit an all time low.

Discussion in 'Fibromyalgia Main Forum' started by sybil, Nov 3, 2002.

  1. sybil

    sybil New Member

    for those who remember me seeing a Rheumy at Guys Hospital in london.
    i posted last week saying that i was going to see this rheumy again,the last time i saw him he said he would see me again if Amitriptyline didn't work and he would do some more tests.

    well he phoned me on friday.i told him i had to stop taking Amitrityline,A}..it wasn't helping my sleep much...B}..i was having far too many side effects.i told him that i was experiencing loads of pain after hydrotherapy,but i was sticking with it.then i asked if i could see him and he could do the further tests,he originally said he would do.

    he said he had done all the tests he could....blood tests...were the only tests he did!!
    i said i had been doing research of my own into FMS and i knew that blood tests were often inconclusive and there were lots of other tests he could do,MRI scans EEG,thyroid tests etc.

    the conversation went downhill after that point,he seemed really annoyed that i had been trying to find out as much as i could,his attitude was....'i have done all i'm prepared to do'...his parting shot was,he was going to recommend my G.P. prescribed sleeping tablets!!
    i had already told him that sleeping tablets were not an option...i can fall asleep with no problem,the only thing that wakes me is the amount of pain i'm in and i would still wake up in pain on sleeping pills!!

    so i have complained to the complimentary healthcare scheme i pay into via my employer,about his attitude and unwillingness to treat me,even though he is getting paid by the healthcare society to do so,on top of his NHS salary.

    i was so upset on friday and angry.it ia basic human right to receive treatment for my condition and i am going to continue to fight the NHS for treatment.

    i have also contacted the Independant On Sunday newspaper.they have brought to light and campaigned on several health issues in the past and i'm hoping they will publish an article on the terrible way FMS and ME sufferers are treated in the U.K. and start a campaign for better treatment for us,

    sybilxxx
  2. sybil

    sybil New Member

    for those who remember me seeing a Rheumy at Guys Hospital in london.
    i posted last week saying that i was going to see this rheumy again,the last time i saw him he said he would see me again if Amitriptyline didn't work and he would do some more tests.

    well he phoned me on friday.i told him i had to stop taking Amitrityline,A}..it wasn't helping my sleep much...B}..i was having far too many side effects.i told him that i was experiencing loads of pain after hydrotherapy,but i was sticking with it.then i asked if i could see him and he could do the further tests,he originally said he would do.

    he said he had done all the tests he could....blood tests...were the only tests he did!!
    i said i had been doing research of my own into FMS and i knew that blood tests were often inconclusive and there were lots of other tests he could do,MRI scans EEG,thyroid tests etc.

    the conversation went downhill after that point,he seemed really annoyed that i had been trying to find out as much as i could,his attitude was....'i have done all i'm prepared to do'...his parting shot was,he was going to recommend my G.P. prescribed sleeping tablets!!
    i had already told him that sleeping tablets were not an option...i can fall asleep with no problem,the only thing that wakes me is the amount of pain i'm in and i would still wake up in pain on sleeping pills!!

    so i have complained to the complimentary healthcare scheme i pay into via my employer,about his attitude and unwillingness to treat me,even though he is getting paid by the healthcare society to do so,on top of his NHS salary.

    i was so upset on friday and angry.it ia basic human right to receive treatment for my condition and i am going to continue to fight the NHS for treatment.

    i have also contacted the Independant On Sunday newspaper.they have brought to light and campaigned on several health issues in the past and i'm hoping they will publish an article on the terrible way FMS and ME sufferers are treated in the U.K. and start a campaign for better treatment for us,

    sybilxxx
  3. jpswife_4boys

    jpswife_4boys New Member

    I'm so sorry for your experience. I too had to do my own research. I then made a list of every little to big thing that had happened to me in the past couple of years and took it to my gp. The thing that worried him most was I had been falling and that I mentioned that I couldn't stand to take hot baths. I had now idea that would ring a bell with him. I never liked Amitriptyline either. My oral surgeon gave it to me many years ago for TMJ. It made me feel like a zombie and there were way too many side effects for me also. My dr. put me on Klonopin (SP?) for restless legs syndrome. I do sleep better without waking in the middle of the night with pain but i still wake in the morning feeling like a train ran over me. I wish you all the luck in your fight for your rights. I will keep you in my prayers!

    Soft hugs,
    Crissie
  4. marcus1243

    marcus1243 New Member

    I was sent to a neurologist who thought every symptom I had was psychosomatic, told me that there 'was no such thing as M.E' and told me to see a psychiatrist.
    FACT: Most people on this board know more about FM, ME and MS than just about any doctor in regular medical practice. I think that's just shameful. A newspaper should do a poll/questionnaire on GP's, asking them how they'd treat FMS/ME sufferers -- most of them would just prescribe exercise and psychiatric evaluation!
    Having said all that, rheumies will only usually do the standard RA Factor/ANA titre blood work then pass you on to a neurologist and wash their hands of you. Considering that that FM is considered a primary rheumatological disorder, most rheumatologists are criminally ignorant about it!
    I could say more, but I know where you're coming from..
    Marcus

    [This Message was Edited on 11/04/2002]
  5. sybil

    sybil New Member

    the thing that really worries me,is people are being turned away without adequate tests and having something else,as well as our DD's.i also have many of the symptoms of MS,which my rheumy has ignored.
    also if people are consistently being denied treatment,how does that effect their mental well being?
    i know i was an emotional wreck on friday,i have pulled myself back up.but another person may have put the phone down and slashed their wrists,taken pills,or jumped under a bus in sheer despair...just because some overpaid ..."^$*&!"*... can't be bothered to do his job properly,

    sybilxxx
    [This Message was Edited on 11/04/2002]
  6. sybil

    sybil New Member

    i asked him about having neurological tests,he wouldn't even agree to that!!
    but i will not give up!

    sybilxxx
  7. magic

    magic New Member

    I am also from the U.k.And i dont even bother trying to talk to my G.p. as his knowledge is so poor and he refuses to prescribe medicines that the consultant has recommended.However the consultant is superb and is always on the end of the phone to answer any question,and there have been loads.He has organised any test I,ve requested and is open to sugestions and will eliminate these to help settle my mind.The downside is I see him privately and pay for the medicines.He is a consultant endocrinoligist.
  8. sybil

    sybil New Member

    i think it is back to my G.P. and see what he will,or probably won't do next!

    magic..i wish i could afford to go completely private,not just the complimentary healthcare scheme i have,which won't pay for 2nd opinions.i think most doctors will suggest lots of things,if they are being highly paid for doing so!

    btw jelly...the healthcare people said my rheumy had done very expensive tests....but he only did blood tests...is he ripping the healthcare people off and charging them for tests he hasn't done?

    sybilxxx
  9. dolly_garth

    dolly_garth New Member

    Hi Sybil it's Dolly from the Uk
    Go Girl! I'm proud of you for not giving up with you'r fighting spirit. Thank goodness that we have gutsy people like you fighting in our corner.
    Let us know how you get on. Count me in you'r campaign, lets be heard. For what it's worth,I'm with you all the way. Lots of love Dolly-G

  10. lucky

    lucky New Member

    and keep on fighting. I have been fighting with any and almost every doctor since I have CFS/FMS. The only one who supported me all over the years, was and is my family doctor, because he knew that I was and am not 'crazy'. I am sure that over the years of my strong voiced opinions, I at least got heard, but also I believe that my name here in this City must be wellknown by all the specialists I have seen. They are probably comparing notes of my 'bad' behaviour. But, I got my message across loud and clear, and I am sure that it made it a little easier for other people with these illnesses after to at least listen to them. If I would have the energy, I would do so much more so that these illnesses are getting much more exposure than they are getting at least here in Canada. So, keep on your little battle to get the justice you deserve and the care you deserve. All the best, Lucky
  11. Roxi

    Roxi New Member

    This is going to sound like an "oh,yeah...I've got it worse" but here goes! Many of us in the US have no health insurance because we can't work. My own doctor tells me to "learn to live with it." As if you can live with constant "screaming" muscle pain in every possible muscle, and let's not forget the nausea and diarrhea! Here doctors don't even acknowledge the diagnosis of ME! British and European doctors are the only ones doing real research on the viral theory which I think has to be the correct approach! Here the doctors tell you to see the Psychiatrist! Call me crazy but I think years of 24 hour a day pain is apt to make one a little testy! Especially when you can't get treatment unless you get a bank loan! A fed-up Roxi
  12. sybil

    sybil New Member

    i'm not suggesting in any way that everyone in the u.s. gets brilliant healthcare.but judging from what people from the u.s. say on here,the majority seem to have better treatment and more access to medications that we are not offered here in the u.k. the u.s. people on here with healthcare insurance seem to have access to complimetary therapies too,there are not widely available on the u.k. nhs.
    i think everyone with our DD's are suffering from inadequate treatment and understanding from the medical community,no matter where they live.but we do seem to have a particular problem in the u.k.possibly because our health service is chronically mismanaged and short of money.
    i get very frustrated because without a referral from my useless g.p. i have no access to nhs consultants,unless i pay,which i can't afford to do and i don't see why i should,we have a state funded health service,our contributions are deducted from our salaries/state benefits,so we should still get the same care as someone who has cardiac problems,or cancer.just because our DD's aren't life threatening,we should not be denied treatment.

    dolly,thank you i will be contacting the independant again today,after 10.pm,i do hope they help us,they have certainly brought to light the inadequacies of mental health care in the u.k. they may be interested in the fact that lots of chronically sick people are referred to psychiatrists because they have our DD's,therefore depriving people who have major psychiatric problems a sought after appointment with a psychiatrist.the current waiting time for a psychiatric appointment is an average of 3/6 months.i also want to tell them the terrible struggle we have getting pain relief and appointments with neurologists,rheumatologists etc.fingers crossed!
    love to you all,keep fighting!

    sybilxxx
  13. magic

    magic New Member

    iI didnt even manage to spell your name correctly.Just meant to point out that it is an Endocrinoligist who is doing so much to help me,
  14. sybil

    sybil New Member

    sybil isn't my real name,just my identity on here!

    i wish i could get to see and endocrinologist......sighs...

    sybilxxx
  15. lucky

    lucky New Member

    The questionaire/poll for GP's here in my City was done and can be read on a website. I was amazed to see that most of the GP's know that these illnesses are real and NOT mental. However, the sad part is that with my own experience over many years, there is still almost no help to get proper treatment. I partly blame it on research and funding and/or denial by governments or insurance companies, and before this has not been addressed properly, we will get no better treatments by any doctor. They are trying to wash their hands clean as well because for one reason, we are also taking too much time away with our being sick all the time. This is excactly what my GP told me some time ago, and I should be happy that he looks after me. But, I had the right answer and told him what I thought.
    All this has to stop, and I wish there would be more people with these illnesses no matter where they live who are willing to take the initiative and put their feet down to not let this happen. I have done so in the past and will continue doing it. Kind regards, Lucky