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BMJ: US Editors Choice: Biggest reason for overtreatment gap is perverse financial incentives

Discussion in 'General ME/CFS News' started by Firestormm, Oct 5, 2013.

  1. Firestormm

    Firestormm Senior Member

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  2. Snow Leopard

    Snow Leopard Senior Member

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    The alternative is indeed to change the funding model, but it is sad how unpopular this is.

    The role of a medical practitioner is not merely to see patients, but to improve the overall health of the community.
    biophile likes this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member

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    This article seems to be a very strange piece of doubletalk. It wants to give the impression that the claim of 'Too Much Medicine' in the UK is supported by what happens in the US. This is completely barmy. There is virtually no unnecessary investigation in the UK. Looking back on my medical career, I see now that most of my serious mistakes were due to thinking that some investigation or treatment was not really necessary. I used to be puritanical about my choice of tests and pills. I now see I was wrong. Almost exclusively what is wrong with medicine in the UK is that there is not enough of it. People are not getting tests when they should and not getting treatment when they should - all the time. That the BMJ should think otherwise is an indication of just how out of touch doctors are with the inadequacy of the service they work in. We need to increase funding on health care by about 30% to even get A & E departments safe, to ensure arthritis is diagnosed properly and to ensure that mental health problems get the bare minimum of care rather than the wasteland that is psychiatry at present. Very good doctors and nurses are trying very hard but the system allows everyone not to notice that patients are constantly slipping through the net.

    I looked at the list of things that are supposed to be done too often and surprise surprise it starts with prostate cancer - with the PSA test. It is said by eminent doctors that the PSA test is not really worth doing. The reason is that if you have prostate cancer it will show itself anyway some day with you not being able to wee. And when that happens the cancer is still so slow that ten to fifteen years later you are likely to still be alive, even if you have side effects from radiotherapy, are on chemical castration therapy and maybe even have to use a catheter. PSA 'makes no difference' because you will be alive (sort of) in fifteen years time even if you don't bother. So my wife, being a clever girl, told me I should have my PSA done and it was up a bit. So I had it done again and it was up a bit more, so I booked myself an MRI scan. Being a professor I could do that. I asked my GP for a note to request it but he said there was no need, my PSA was not very high. (It isn't just people with ME up against it now, although I'm on this list because I think you get an even worse deal.) So I said to him I'm having it anyway. So it showed a cancer and on biopsy the cancer was breaking through the gland capsule and just ready to get inoperable. Fortunately, my wife found me an intelligent and brilliantly skilful surgeon called Roger Kirby who cut the tumour out with a robot with no bits left behind and two years later I am fine and as far as I know will never need a catheter or radiotherapy or oestrogens. I am glad I had the PSA.

    The moral of the story is that to see why PSA is useful you have to understand the way it can be used in decision making and that is extremely complicated - much too complicated for the rather dim people who publish papers saying PSA is no use. In certain situations it is very worth doing. What is better - to do a few too many or not to cure prostate cancer at all. Interestingly, Roger himself developed prostate cancer a year later after doing his own PSA and as far as I know has had surgery too - he talked about it in a newspaper article.

    Do people with ME think they are getting too many tests and too much treatment in the UK - not as far as I can see!

    However, the other side of the story, that US physicians treat according to what makes them a profit and not according to what is good medicine, is absolutely true. The difference is quite astonishing when you first meet it. When I first started taking part in meetings in the US about drug trials I could not believe what I was hearing, as an innocent UK doctor who thought the idea was to make the patient better. I suspect people can buy all sorts of useless treatments for ME in the US. I used to think we were so much better off in the UK. However, now that our health care system is no longer safe even for standard problems I am not sure I want either option. And fee for service is taking over, and since the total budget is capped I have a nasty suspicion we will end up with the worst of both worlds.

    But it makes no sense, as the journalist does, to suggest it is the same problem in the two countries!
  4. Bob

    Bob

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    Ha! Not very likely! (I agree with your observations.)

    Almost every single friend of mine has a horror story to tell from the NHS, always as a result of under-investigation.

    A friend with undiagnosed Type 1 Diabetes was finally taken into hospital as an emergency because his doctor repeatedly failed to diagnose him, despite him losing a lot of body weight and repeatedly complaining about his symptoms. He was repeatedly dismissed as making a fuss about nothing.

    Another friend came back from travels with a large/deep leg sore, and despite repeated visits to her doctor was told it was nothing significant, and just given some cream for it. In the end, she took herself to the London School of Hygiene and Tropical Medicine who treated it as an urgent medical problem. (It was some sort of tropical parasite.)

    Someone else I know was told they had CFS/ME, and a few months later they had died from undiagnosed cancer. The cancer was causing the symptoms.

    I'm certain that we all know multiple stories of undiagnosed illnesses because our doctors don't have proper systems in place, usually due to budget constraints and time pressures, and sometimes just due to pure laziness, incompetence or neglect.

    However, having said all of that, the NHS can provide an exceptional service for dealing with acute medical problems such as heart disease and cancer, once a diagnosis is made. It also usually treats diabetes, and many other treatable chronic conditions, very well. Ignoring ME/CFS for a moment, I've nearly always found that our hospitals and specialist services provide excellent care, but that our family doctor services can be woefully inadequate, whatever problem you have.

    I do support the principles that are the foundation of the NHS, but it always needs better funding. They say it's one of the most 'efficient' medical systems in the developed world. It wouldn't be quite so 'efficient' if it had adequate funding, but the service would be better.
    peggy-sue, aimossy, Valentijn and 2 others like this.
  5. Valentijn

    Valentijn Activity Level: 3

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    When I read these sorts of articles, my first thought is always to wonder how closely tied these organizations (or their members) are to the health insurance industry.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Yes, the care is good once you get to it, but the system is increasingly designed to stop you getting it. In fact the only real function of primary care in cities is to stop people getting to specialists as far as I can see. The old function of the GP as looking after a whole person simply doesn't happen in cities any more. It would make much more sense for all the services provided in health centres to be set up in hospitals where other facilities are on tap.

    I actually would challenge that. The main source of inefficiency in the NHS is the cost of trying to reduce costs. There is now a huge tier of management in hospitals trying to minimise costs. GPs are there to try to stop people getting to 'expensive' hospitals - i.e. places where proper care is provided at a realistic cost. If you increased funding by 20% you would get maybe 35% extra service because you could simply send all the cashiers who do the paperwork for the 'internal market' home. And we have a huge unemployment problem so why not let healthcare grow?

    Sorry, my political views may be getting the better of me.
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Yes, the care is good once you get to it, but the system is increasingly designed to stop you getting it. In fact the only real function of primary care in cities is to stop people getting to specialists as far as I can see. The old function of the GP as looking after a whole person simply doesn't happen in cities any more. It would make much more sense for all the services provided in health centres to be set up in hospitals where other facilities are on tap.

    I actually would challenge that. The main source of inefficiency in the NHS is the cost of trying to reduce costs. There is now a huge tier of management in hospitals trying to minimise costs. GPs are there to try to stop people getting to 'expensive' hospitals - i.e. places where proper care is provided at a realistic cost. If you increased funding by 20% you would get maybe 35% extra service because you could simply send all the cashiers who do the paperwork for the 'internal market' home. And we have a huge unemployment problem so why not let healthcare grow?
    Kati likes this.
  8. Bob

    Bob

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    Yes, I agree. When always looking for cost savings, it means taking short-cuts, not looking after staff properly, and not investing properly. Short term cost cutting leads to long-term costs, such as badly run services, high staff turnover, badly trained staff and crumbling infrastructure.

    Yes, we're getting into the realms of politics here, so I'd better stop there.
    peggy-sue, aimossy and Valentijn like this.
  9. Esther12

    Esther12 Senior Member

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    Personally... yes. I've never had much in the way of testing or investigations, other than the usual blood tests when I first got ill, but I do think that I've had too much treatment. Given how little is understood about the cause of CFS patient's health problems, I think that it would be better if there was less of an attempt to medicalise the way in which patients live their lives. If I'd been informed of the nature and evidence base of the psychosocial management that is often applied to CFS patients, I would have never gone along with it.

    There seems to be a problem with under-investigating people who have been given a CFS diagnosis, but I think that there's also a problem with over-treatment, even if it is in a form that is too often seen as 'management' that does not need informed consent.

    Also, I think that there's some reason to be concerned that there are perverse incentives with the way in which research takes place and is published, which can lead to unduly positive claims about the efficacy of treatments. When it comes to reporting poor results for an intervention one is financially, ideologically and professionally invested in:

    There's been lots of awareness of the problems around pharmaceutical research with the AllTrials campaign, and there also seems to be particular problems around psychology: http://www.biomedcentral.com/2050-7283/1/2

    There are also specific issues that make things particularly bad around CFS.

    Given these problems, I'm keen to avoid any CFS treatment until there is compelling new evidence which allows those who claim to be 'CFS experts' to be more genuinely informed and useful.

    PS: Jonathan Edwards Sorry to hear about your health scare, even though it thankfully worked out okay - best of luck with that continuing. Thanks for taking an interest in CFS and working to help... I feel a bit rude being critical of CFS research when you're just starting to research CFS! I have found that the better researchers are only too aware of the problems that surround a lot of medical research though, so don't think that this will be taken the wrong way.

    PPS: re NHS funding - they still fund homeopathy though! I hope that the current financial difficulties faced by the health service leads to some really serious thinking about how it is that they allocate resources, and how good the evidence for an intervention needs to be before it is recommended to patients. Cheap interventions which have just been shown to lead to minor improvements in self-reported symptoms in non-blinded and poorly controlled trials seem unlikely to be of much real value, even if they can tick the necessary boxes.
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  10. Kati

    Kati Patient in training

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    So, Jonathan Edwards,

    Now you can appreciate that the UK government will do everything in its power NOT to see ME as a devastating illness of biological origin, because they have everything to lose, notably health care cost, research, and yes admitting they were wrong for 30 years about this very inconvenient disease. The disability insurance industry has much to lose as well because covering a mental illness costs less than a lifelong physical illness.

    THe UK guidelines go all around the world. Here in Canada we have a brand new ME/FM and Lyme clinic. We are being told over and over 'there is no money for testing'. They do not even want to refer patients to other specialists. All they want is to enroll us into group therapy. There they will emphacize the holistic aspect of the disease, mostly the psyche, coping and the importance of exercise. Also at the opening ceremonies for this clinic, they said publicly they needed autopsies. So they are very keen to test the dead ones but certainly not the living.
    Valentijn and rosie26 like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    A lot of good points there Esther12, with which I agree. It is complicated, but maybe part of the reason for the CBT is that it is cheaper to send patients to an underpaid psychologist, who doesn't really want to be doing the job anyway but needs the money, than take up consultant time listening to people and explaining what is really known. I had better not go on or I will get into hot water.
  12. SOC

    SOC Moderator and Senior Member

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    Fascinating observation. I'd love to hear more about the "useless treatments for ME in the US" that we Americans are managing to buy. I assume we're not talking about non-medical alternative treatments which can be bought in the UK as well as the US. What are the useless treatments you are referring to that US patients are buying and UK patients are not? Antivirals? Treatments for OI? Pain medication? Antibiotics for Lyme disease? Thyroid medication?

    I've received several medical treatments that have significantly improved my quality of life. They have moved me from bedbound to working part-time, so I wouldn't call them useless.

    Is it the sense of US-based patients that we are being overtreated with useless medical interventions? My doctors certainly have not leaped to provide me with excessive testing or treatment, but maybe I'm the exception, not the rule.
  13. Valentijn

    Valentijn Activity Level: 3

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    I've had some experience with both health care in the US for ME/CFS, and in the Netherlands, which is pretty similar to the UK system.

    I agree with Esther12 about over-treatment being a problem, also in the Netherlands, as I was also an unwitting recipient of the "we'll pretend we agree that you're actually sick, then we'll try to brainwash you into seeing yourself as healthy" CBT. That was a huge waste of government money and my money, since we had to pay for part if it, and it wore me out when I could've been resting and possibly recovering. I'd rather see the ME/CFS clinics completely closed down than to continue to offer that crap.

    I also agree with SOC that US ME/CFS patients are not being over-treated - the vast majority are left completely untreated, unable to access doctors at all, and are often lacking any of the disability support or benefits available in Europe. The insured patients will have their insurers fighting every step of the way, as basically no tests or treatments are specifically approved for ME/CFS.

    A very small minority of wealthy patients can afford to buy whatever treatment they want, but I'd question whether any testing or treatments they request are excessive. We have a disease of unknown etiology, with a ton of disabling and uncomfortable symptoms. As long as a symptom exists and is having an impact on the quality of life, where is the harm in investigating or trying to treat it?

    Some treatments are pretty wacky (drinking bleach, etc), but that's being done by the patients who aren't getting access to appropriate diagnostic resources or treatments, and seems to be a world-wide problem, not an American one.
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  14. aimossy

    aimossy Senior Member

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    Amen Prof Edwards!!!!
    just my tired 2 cents.
    market models/business models in health will always fail the people that work in health and the patient.
    This is my personal opinion.
  15. rosie26

    rosie26 Senior Member

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    I worked in a hospital all throughout the 90's, the one thing that annoyed me was Management. Over run with Management/Managers/Meetings.
  16. meandthecat

    meandthecat

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    Thank you so much Jonathan Edwards for sharing this insight;

    I looked at the list of things that are supposed to be done too often and surprise surprise it starts with prostate cancer - with the PSA test.

    I am at that place and had to fight my GP to get the PSA test in the first place, after 2 botched biopsies I pressed for an MRI and yes there is a problem. Now I am calling twice a week to get them to redo the biopsy and the weeks pass....

    After years of being marginalised and ignored I experienced a decent medical experience for the first time in the RUH urology dept; but after a year, either the ME effect has caught up with me or the funding ebb tide is leaving me stranded.

    I really like the young consultant, he's the first Doctor to say M.E to me without looking as if he had sucked a lemon but where he is placed within this cascade of incompetance I do not know.
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  17. Shell

    Shell Senior Member

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    I agree with Jonathan Edwards here.
    I wonder if we get not so much "too much treatment" on the NHS as simply "the wrong treatment". And it's not just about inability to access the right tests - there's the problem of poor skills in the NHS. A problem I saw getting worse as I got ready to leave nursing.
    The quality of student nurses and medical students ranged from bad to appalling with the occasional golden one in there.
    I worked with a staff grade doctor on a busy acute psych ward who didn't know how antipsychotic meds worked. Frankly she was dangerous.

    I've just told my Cardiologist that I don't want to go ahead and have the tests for hyeradrenergic POTS even though it's pretty obvious I have it - because the skills, and time needed to do the test properly just don't exist where I am in the NHS.
    Thankfully the Cardio is trying to treat me properly without the those particular test results.

    Then there's the test results that doctors ignore. I got cross with medics sometimes when we nurses but big red circles around blood results that needed medical follow up only to find the results had been filed and no doctor had looked at them!

    My friend's husband is dead because the brain scan he had was "clear" when what they meant was "lost". He had a tumor which was then found way too late. The original scan is still missing.

    As both a nurse and a patient I've seen things that have nothing to do with NHS funding and everything to do with gross incompetency and lack of basic humanity.
    rant over. (for now)...
  18. Snow Leopard

    Snow Leopard Senior Member

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    Interestingly enough, "Biggest reason for undertreatment gap is perverse financial incentives" also works...
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  19. biophile

    biophile Places I'd rather be.

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  20. peggy-sue

    peggy-sue

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    There is a huge shortage of clinical psychologists in the NHS - a waiting list I was offered by my gp would take 18 months to get an appointment - for a serious emergency.
    Fortunately, as it was related to my being a carer for my Dad, who was dying from acute pancreatic cancer, I managed to see somebody via a Maggie's Centre within a couple of days.

    There is fantastic support for cancer sufferers.

    I do not understand why CBT therapists' and clinical psychologists' precious and valuable time is being wasted on ME - when there are other folk, who they CAN help, desperate to see them. o_O

    When an addict comes to their "damascus moment", they need proper help and support IMMEDIATELY.
    Otherwise the moment is lost.

    I'm sure it must be similar for other problems too - once the person knows they have a problem and has asked for help - they need it there and then - or the problems will only get worse.
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