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It’s Official - being a pushy patient is good for you

Posted , 6 users are following.

Oregonjohn-UK
Oregonjohn-UK

Professor David Haslam, Chairman of the National Institute of Health and Care Excellence (NICE) said on 2 October 2014 that NHS patients should adopt American attitudes and become more assertive to ensure they get the treatment they need. In an interview with the Daily Telegraph he said that too many patients were not being offered medications already approved by NICE and that they should become more knowledgeable about their conditions and ask for dugs which should be prescribed for them

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  • misdiagnose
    misdiagnose Oregonjohn-UK

    Posted

    Sorry, I pressed the reply button twice and then could not remove the second post! I'm wondering if the horror stories I see on this and other forums, of misdiagnosis is entirely due to ignorance (ignorance is no excuse under UK law). In my experience, and I am in the UK as an NHS patient, I believe that I was victimised. I was told by local people that the GP I was with had her 'favourites' and that she was known to push patients who live in certain high price property areas into private treatment. Though I live in a nice house, I don't own it and her assumptions about my bank balance are therefore unjust. This is something that is happening now in UK medical practice, judgements about people's capacity to pay. So many, due to politics also, have private insurance, at least in my 'middle class' area of London. The problem comes when you ask your GP for blood tests, blood pressure checks on all 4 limbs, referrals, scans, etc., and don't get them. Then you change GPs and go on changing GPs until you run out of practices in the catchment area where you live. From what I am told, due to its complexity, no-one is interested in GCA despite the very serious and long term dangers of mismanagement (which are so often underplayed). 
    • EileenH
      EileenH misdiagnose

      Posted

      If you want a dupicated post removed simply click on the report flag and ask the moderator to remove it for you. He can also change bits if you have made a typo that provides the opposite meaning of what you intended.

      Both PMR and GCA are autoimmune disorders, neither of them have an easy test and whilst PMR is the most common arthritic problem in the over 60s what you will find is that the people who have problems tend to be younger. It may not be an excuse but they simply don;t expect to find a 51 year old with PMR - default tends to be fibromyalgia which until very recently had no real options for therapy. PMR can only be managed with pred - and they are taught to be terrified of pred. 

      To say "no-one is interested in GCA" is a massive exaggeration. There are several extremely active research groups, at least 3 of them in the UK. The greater problem is that, at present, there is no real test that is 100% accurate and it is very rare. It is classified as an orphan disease and in the vast majority of practices no-one, not even the older GPs, will have seen a case and diagnosed it themselves, never mind have managed one. 

      You may be in London, you may live in a fairly wealthy area - but please do not assume that the whole of the UK suffers with the same problems. This is spouted all the time: rising house prices, availability of school places at the school "I want", the list is endless. London is London and suffers from its own problems - most of us have the choice of a single school, 2 if we are lucky. Our housing market is stagnant at best - certainly not rising prices. There is the choice, again, of one GP practice, if you are very lucky there may be another. And for the vast majority of us there isn't a hope in hell of private medical insurance on a pension so no, our doctors do not make that assumption.

      I do not deny there are problems with the NHS, with getting PMR looked after properly - I am as shocked as anyone at the level of ignorance. But I was never denied the care - the doctor I saw just had never come across it before. When I saw a different member of the practice it wasn't a problem. 

      Remember that these forums represent quite a small proportion of patients. For one thing, the ones who are computer literate in the first place. And for another - the ones who met with problems and went on a search for more information. I would say that in the local support groups there are probably 10% at most who figure here, the rest are generally happy. 

      I was discussing the Expert Patient Programme with one of the top UK PMR/GCA researchers just recently - I'm not sure there is one for PMR/GCA. And if there were it would open up other problems. For better or worse your average healthcare professional does find it difficult when faced with a patient who knows more than they do about the care required - a recent survey has been published with regard to that. How you get on with such healthcare professionals is greatly dependent on your attitude to them. Despite having come across a few difficult consultants, my experience with GPs has been predominantly positive. It is possible to avoid the more difficult ones even within the NHS - and if you live in the south east it should be even easier with the choice of at least 2 of the top PMR/GCA experts living within a short train ride of London.

  • misdiagnose
    misdiagnose Oregonjohn-UK

    Posted

    Just a reminder that this forum is not for judging other forum users for their experiences, knowledge or opinion. Anyone who has 'issues' with any forum user should refer themselves to the moderator for help. 
  • misdiagnose
    misdiagnose Oregonjohn-UK

    Posted

    Professor David Haslam needs to rub shoulders with doctors with a superiority complex or the ones that look down their noses at patients who do not have the qualifications to understand complex diseases such as GCA.  It is not just drugs that are important but referrals, blood tests, scans and other support which patients often do not receive because GPs only have 10 minutes per patient and a very limited budget for everything else. Maybe he is not informed about such practical matters and if he is, he is living in cloud cuckoo land. 
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