UK Parliamentary debate today - Thursday 24th January 2019

Jonathan Edwards said:
Interesting. The co-existence of the Scottish Parliament (which I assume is led by SNP) and the UK Parliament, with SNP members, may add a layer of complexity to what is going on. Presumably the SNP-run Scottish Parliament decides on health care policy in Scotland (which is independent of NICE) and presumably it is in tune with SNP health representatives at Westminster. The Scottish Parliament seems to have taken seriously Emma Shorter's petition, and it sounds as if the SNP health lead at Westminster is aware of the material there.

Should we be expecting Scotland to announce some sort of policy shift in relation to treatments first? I don't remember this being raised but I may have missed it.
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The representatives of the Scottish Government this morning were quite disappointing but the committee were very good. Not really letting them off the hook. They mentioned setting up a working group and were very concerned by the poor attitude of some doctors to people with M.E. and wanted to change that. I missed the very beginning but they seemed to also be organising a proper 'count' of people with M.E. organised by official data collectors, similar to ONS I suppose.

ETA changed Parliament to Government
 
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Daisymay said:
I'm afraid I've come away from listening to the debate very grateful indeed to Carol Monaghan and colleagues but feeling how extremely powerless and ineffectual MP's are to change anything, the status quo will continue. The Health Minsters round up of the situation was so predictable, meaningless and hopeless.
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I wasn’t able to listen but from what I’ve read and especially the poor response from the Health Minister I feel disappointed too. I don’t know what I expected but it wasn’t that.

No urgency. No clear understanding. No proactive planning of any worth. Just same old spiel. Typical not answering the questions asked, not addressing harm and bluffing his way through the issue of funding for “proper” research.

I’m not clear on what has been gained? Where can Carol go from here? How can she break through the pre prepared response? In that format it’s not really a debate? It’s like he listens, makes a few of the right noises and then churns out the usual stuff that resolves nothing in particular.
 
dangermouse said:
I wasn’t able to listen but from what I’ve read and especially the poor response from the Health Minister I feel disappointed too. I don’t know what I expected but it wasn’t that.

No urgency. No clear understanding. No proactive planning of any worth. Just same old spiel. Typical not answering the questions asked, not addressing harm and bluffing his way through the issue of funding for “proper” research.

I’m not clear on what has been gained? Where can Carol go from here? How can she break through the pre prepared response? In that format it’s not really a debate? It’s like he listens, makes a few of the right noises and then churns out the usual stuff that resolves nothing in particular.
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I would argue that the minister's response was less important in many ways than having a substantial number of MPs, from all parties, stand up in the Commons and say that the way that pwME have been and are being treated is wrong. That more money should go to biomedical research. That CBT shouldn't be used as first line treatment, and GET shouldn't be used at all. That PACE is crap. All of the things that us patients have been saying for a long time and have been dismissed for.

Unfortunately, this was never the end point. It's just another battle that we have won, and that has turned the tide in favour of us a bit more. More battles will come, and we might lose some, but the momentum, I believe, is in our favour.
 
Adrian said:
I do think they have a responsibility to look at failures of the funding system
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I think this is the remit of Parliamentary select committees and there is one that is aware of the problem of PACE. But if such a committee is advised by the accepted experts that all is well it is hard for it to take things further. If all professors of mathematics say two and two is five then how do you establish they are wrong? I realise that things are more complicated but there real obstacle here is medical politics.

The CEO of MRC says PACE was fine.
 
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ukxmrv said:
http://elearning.rcgp.org.uk/course/info.php?id=93
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Thanks @ukxmrv I looked that up earlier but obviously I can’t actually see the content, just a very vague outline. Would be great to know the content, I expect bps based so not helpful. I was looking again at RCGP comments on the 2017 consultation on whether the NICE guidelines should be updated. They said yes - but wait for it because the model was too biomedical and not enough on the mental health aspects! Screenshot attached. So I expect the course content will surely be bps based?
 
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dave30th said:
I heard his little spiel. the idea that NICE is treated as just advisory is of course ridiculous
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I think there is an issue beyond NICE:

Bad (NICE recommended) treatments are sometimes forced on patients either on children via threads of child protection of via insurance/benefits etc requiring people to take 'treatments'. Nice do say no one should be forced but doctors or others don't follow that.

Patents are not warned of possible harm of treatments and thus they are done without informed consent.

So NICE have a role in that the recommend treatments that the evidence suggests don't work but there are other issues around how they are carried out by doctors.
 
Jonathan Edwards said:
I think this is the remit of Parliamentary select committees and there is one that is aware of the problem of PACE. But if such a committee is advised by the accepted experts that all is well it is hard for it to take things further. If all professors of mathematics say two and two is five then how do you establish they are wrong? I realise that things are more complicated but there real obstacle here is medical politics.

The CEO of MRC says PACE was fine.
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They also need to look beyond experts and ask international experts. If the CEO of the MRC says that PACE is fine then she is marking her own work. More generally if a committee sees a disease that affects quite a lot of people is not understood or researched then they should be asking why is the research funding system failing to meet the health needs for people. They need to ask the difficult questions.

I do think one issue is that people are afraid of experts and take what they say at face value rather than analysing what they say and asking detailed (and insightful) questions to challenge the initial answers given. But I don't think the system works well in that way particularly where science is involved. Too many are ignorant or scared of science.
 
Is there some contradiction and little point of patients lobbying MPs on research funding action and them speaking on it, if carol MP isn’t going to take that further because she’s been briefed it’s not the ministers, or MPs Place to interfere. There’s no point saying we need more funding in parliament if it’s argued parliament should not intervene. Those who Make that argument, @Jonathan Edwards etc, what are you proposing to significantly get research interest and funding up quickLy if MRC highlights AND conferences isn’t working. Wouldn’t it have been better if parliament, DOH HAD intervened years ago and insisted on incentivising funding being offered by MRC in spite of deep seated prejudice at the MRC who are now funding hardly anything.

Dictating what the MRC do all the time, of course inappropriate, is not the same as investigating, making suggestions on a controversialissue in crisis etc. if parliament doesn’t have any authority over the MRC, who does?

Cinders66 said:
I am more optimistic. When we met with Carol Monaghan we discussed a bit the issue that MPs are not, and should not be, in a position to dictate what the MRC or NICE do. Monaghan was very aware of that and I suspect never expected to get a commitment from the health minister. That is not how it works and MPs know that, but they also know that debates like this can have an effect on the public narrative, especially if cross party.

It seems to me that we are now quite a long way from the situation where it can be claimed that objections to the PACE trial come just from a small, malicious group of patient activists. The BPS position has depended heavily on establishment narrative. The House of Commons is an important part of that narrative.


but parliament did take exceptional measures on brain tumours, including allocating or insisting on funds to stimulate research
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NB I’m quoting here @Jonathan Edwards from above here in yellow, I only said the last two lines of it.


This wasn’t made a point of , ie parliament intervening on brain tumours when medicine was failing. I would have thought it would have been a good model and example as what needs to happen for ME. Otherwise if we just keep the name and criteria of current use, to get progress we await a change from NICE, uncertain how great and then research validation to remove stigma and inspire other researchers... but isn’t that a long wait.
 
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strategist said:
Is it enough to stop the BPS people putting out the usual articles on good science being under attack by despicable activists?
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Hahahaha. No. Definitely not a chance of that.

It should look silly to anyone paying attention but this has been the PR strategy all along and they will keep saying that on their death bed.
 
anniekim said:
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Thanks @ukxmrv I looked that up earlier but obviously I can’t actually see the content, just a very vague outline. Would be great to know the content, I expect bps based so not helpful. I was looking again at RCGP comments on the 2017 consultation on whether the NICE guidelines should be updated. They said yes - but wait for it because the model was too biomedical and not enough on the mental health aspects! Screenshot attached. So I expect the course content will surely be bps based?
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Uhhh.. the RCGP cites the FINE trial as evidence. That's... shockingly bad.
 
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