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  3. Polymyalgia Rheumatica and GCA

There are no excuses for negligent, ignorant or abusive treatment.

Posted , 4 users are following.

misdiagnose
misdiagnose

All doctors can easily find out information about even rare illnesses. If a doctor fails to diagnose a serious illness, such as GCA (which is a medical emergency), and the patient's health is permanently damaged, the patient has a right to complain, to received an explanation or apology or sue for financial compensation. 

I make absolutely no apology for insisting that doctors provide adequate care to their patients and not leave them, as I was, in pain - and considerable justified anxiety - for 5 months with insufficient medication to prevent damage to blood vessels.

There is no excuse. 

I know the NHS is in financial difficulty but the Ombudsman who deals with NHS complaints has been declared 'unfir for purpose'. 

There are many oprganisations which support patients to claim their rights to responsible medical attention, such as Healthwatch, the Patients Association, Pohwer (which is a £9 charity which exists exclusively to help patients to complain about bad NHS treatment).    

The consequences of a failure to diagnose and properly treat GCA are long term very serious disability and it angers me immensely that it is being brushed under the carpet as though it is something that might only cause loss of eyesight.  

2 likes, 10 replies

10 Replies

  • tina-uk_cwall
    tina-uk_cwall misdiagnose

    Posted

    Hello there, you are quite right, in fact I was in 'thread' discussions yesterday with Eileen on just this subject. I was not kept waiting anywhere like the length of time you had to wait for diagnoses and of course the worse thing about all of this is that we, until diagnosis, very often have never heard of this condition either, but we're not Drs so we do have an excuse. Also, those of us who are diagnosed with PMR very quickly learn about GCA symtoms, so I believe, are at in a better position to help diagnose it if we should be unfortunate to ever develop this very serious condition. It's the people that only develop GCA symptoms first that I feel are at a disadvantage because if they are unfortunate to develop these conditions and access the health care options of clinicians who don't know about it then I believe they have a much worse outcome. Christina
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Hi Christine, I was diagnosed with PMR 12th November just there and I had never heard of GCA and it was only while researching PMR that I learned about it.  I know now that what I had was GCA as well.  I had a terrible headache just one side of my head and my jaws were painful to open my mouth wide.  My gp and myself were going down the route of neuralgia.  Anyway if you don't know what you don't know how can you ask.
    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Quite right, that's why we rely so heavily on the professionals that sometimes fail us because of their lack of knowledge. And as I stated in my thread yesterday, PMR and it's associated GCA are not rare conditions, therefore in my opinion Drs have no excuse for any lack of knowledge. Christina 
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      It was a locum dr. and after seeing me and getting bloods done he mentioned at the time PMR and yet I thought it was ME which I have had for 14 years.  My own gp and myself were going down the road of ME and neuralgia which I now believe was GCA.  Am I lucky or am I lucky.  This forum has been a Godsend to me.  The more information I have the better.  Thanks everyone
  • Nefret
    Nefret misdiagnose

    Posted

    It really isn't being 'brushed under the carpet' now.  EileenH has given you details of all the research and projects which are taking place right now.  I'm not going to reiterate them.

    On here, you are preaching to the converted.  Step up and do some real work for PMR and GCA by raising awareness where it is needed, not where it is already a given.

  • misdiagnose
    misdiagnose

    Posted

    Please don't make assumptions about what I do and don't do. This is not a forum for passing judgements about other forum users. If it is my opinion that GCA is 'brushed under the carpet', I am entitled to my opinion and you yours. Any moe personal judgments and I will be making a complaint.
  • misdiagnose
    misdiagnose

    Posted

    The problem with research is that it is usually pharmaceutical based and funded by big rich drug companies who are researching drugs for illnesses. Unfortunately, more drugs are not always the answer, causes of illness, prevention, management that can assist recovery without recourse to chemical medications, the progress of the disease which can cause pain and disability and how to prevent these are not part of the 'programme'. I have a huge number of the most simple questions about GCA and its treatment which top specialists cannot answer because they just do not know but they won't find out if the only answer is to find another drug to treat it to make money for the drug companies. Many people think that chemicals in the environment contribute to auto-immune illnesses so for me the answer is unlikely to be more chemicals. Such thoughts challenge the powers that be but I don't see why fat cats should make tons of money from my illness. 
  • pat38625
    pat38625 misdiagnose

    Posted

    I agree with you for the most part and what you say is right.  In an ideal world it would be great that causes of diseases be researched instead of  just treating symptoms.  Also because I was in so much pain in my body and total brain fog I was never as glad in my life to be prescribed preds.
  • misdiagnose
    misdiagnose

    Posted

    I'm not suggesting that prednisolone does not work. It works perfectly for PMR and GCA, so well in fact, that the drug itself is used for diagnosis (a little like anti-hystamine is used to diagnose allergies). However, it has very serious side effects that should not be overlooked. Instrad of looking for other drugs to replace prednisolone, other questions could be researched. For instance, if I have had PMR, what might prevent GCA? There is no screening for PMR and I have spoken to a number of people who had all the symptoms of PMR but this was denied by their GP leaving them with pain and incapacity. Doctors can be very defensive if a patient knows more about a condition than they do themselves, but if this is the case, they only need to look on the internet or ask a colleague, it's not rocket science!
  • misdiagnose
    misdiagnose

    Posted

    Thank you for your votes on this topic! 
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