The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

UK - The "Saatchi" Bill / Medical Innovation Bill

Discussion in 'General ME/CFS News' started by sarah darwins, Feb 24, 2015.

  1. sarah darwins

    sarah darwins I told you I was ill

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    I understand that crunch time is looming for the Medical Innovation Bill, the declared aim of which is to "help doctors to innovate new treatments and cures". It has been amended and passed in the House of Lords, but if the government doesn't make time for it in the next few weeks, before parliament goes into summer recess, it will probably be shelved for good.

    I don't know a great deal about this and would like to know what others think. On the face of it, giving more leeway to doctors seems like it might help reverse the trend towards top-down, centralised control of what doctors on the front line do here in the UK.

    There is a lot of opposition to the bill, some of it very organised. Just Google "saatchi bill" and you'll see what I mean. The phrase "quack's charter" crops up a lot. By and large, most of the media coverage seems to be against the bill, but I wonder where they're getting their opinions from. So ...

    What do people here think about this one? Would it open new avenues of treatment for ME/CFS sufferers here in the UK? What do you think? Opinions invited ..

    [note: I couldn't see a thread dedicated to this anywhere on the forum — if I've missed one, let me know]
     
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  2. Esther12

    Esther12 Senior Member

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    I don't know either.

    Things are such a mess that I can't say if this will make them better or worse. My hunch is that it would lead to more problems overall? I don't really have a good enough understanding of it to say though.
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I note that the Liberal Democrats look to have put a spanner in the works here. All the same it is interesting to consider whether the idea is a good one.

    I have to say that I am unclear why the law needs changing. I think there are different questions that need separating. Firstly there is whether NHS doctors should be able to prescribe treatments not approved by NHS guidelines. If it is a matter of cost then I think there has to be an agreed limit on what can be prescribed since the NHS is a mutual insurance agreement and cost effectiveness has to be taken into consideration otherwise it is simply unfair to spend vast amounts with little hope of benefit when it means that there is no money for other effective treatments.

    But that is presumably not what Mr Saatchi was worried about because he could pay. So the question is what limits there are on a doctor when it comes to providing an unconventional treatment if costs are covered. My understanding when I started using unconventional treatments on a trial basis was that I could do anything I liked as long as I could persuade a court of law that I might then be brought before that I had acted in good faith with good reason to believe that the benefits of the treatment might outweigh the risks and that I had made sure the patient knew exactly what the arguments were (or something like that). And in common sense terms that would obviously mean that I had notified whatever relevant authorities there were of my intention and ensured that they had not made an objection on ethical grounds and also that I had canvassed written opinion from colleagues about the treatment being a reasonable idea - both of which I did.

    All that might seem a palaver but to be honest I find it difficult to think of a situation where I would want to go ahead with an unconventional treatment unless I was prepared to go through this. An exception might be a very rare disease or situation where nobody knew what would be best, but I would still want colleague's advice. It may be that bureaucracy is much worse now but ironically I suspect bureaucracy is still not too much a problem for one off treatments - it is setting up proper trials that has become so difficult.

    So what is the problem with the way things are? One scenario would be that a doctor has a brilliant idea of a completely new treatment but cannot find any colleagues to support his suggestion. My own idea was pretty unconventional but the worst replies I got at least said 'well this is highly speculative but if the safety profile is acceptable then if carefully documented doing a small trial is not unreasonable'. I think we have to have a law that requires the doctor to at least get that level of approval. The other scenario is that the patient or family hear of some unconventional treatment given elsewhere and ask for it in the UK. They want a doctor to act as technician to administer the treatment. Here I think it is very important to stick to the current situation in which the doctor takes total responsibility for the safety and advisability of his actions and is held to account if necessary. I think we have to prevent a situation in which the doctor is legally covered to say 'oh well they asked for it so I helped them out' - which is a bit like an air hostess saying 'oh well they were in a hurry so I agreed to stand in for the pilot who was ill'.

    I have a strong feeling that this bill is all about a very rich man wanting to think that you can buy off people's ethical responsibilities so I see red flags all around. Maybe others have other views?
     
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  4. Esther12

    Esther12 Senior Member

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    I still don't have anything much to add, but thanks to @Jonathan Edwards for the info on how things (used to) work in this area.
     
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  5. user9876

    user9876 Senior Member

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    I've got the impression that until the recent changes were made funding for non-approved treatments could be obtained by applying to a committee in the local commissioning body. I don't know what happens under the new GP based commissioning system. That seems like quite a good system where the doctor applying for funding needs to make a good case. My experience was it could have a quick turn around time (1 or 2 days) where necessary. Of course this may just have been about what was routinely specified in the commissioning contracts.

    Generally I would agree with what you said. But there is a case where perhaps another doctor requests a treatment expecting it to be done by a second doctor (able to act as a technician but without a full understanding). My guess is this happens with consultants and junior doctors as well as say consultants asking GPs to do stuff. I wonder if in the future a more disaggregate situation could occur where experts and consultants could supervise treatment remotely getting sensor data, with video links etc. In this case, they may need a local doctor to administer certain things. The issues could come in that this could be cross legal jurisdictions and although a remote doctor may take responsibility would a local doctor still be accountable. I guess here it might be that the local doctor needs to have confidence that the experts they are helping really are experts. I guess we may already be seeing this as patients cross boarders but if remote consultations become possible then the problems could become more extreme.
     
  6. sarah darwins

    sarah darwins I told you I was ill

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    Thank you for the informed opinions of those who have replied. It's all quite hard to fathom for someone outside the medical profession.

    I suppose I was wondering if the Bill might lead to more options here in the UK for ME sufferers, and fewer people travelling overseas in search of help, fewer people effectively treating themselves (often without any real medical supervision and sometimes without much knowledge). The impression I'm getting is that the answer is "Probably not".
     

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