UK Parliamentary debate today - Thursday 24th January 2019

[Jonathan Edwards]

the grounds that patients can opt out of them and that 'some people find them helpful'

Yes, well patients can opt out of homeopathy and 'some people find it helpful'.

In fairness the Scottish Parliament has no more business deciding what Scottish NICE should say than Westminster has for English NICE but I wonder if the pressure was felt a little more actually up north. Maybe in fact Scottish NICE is more conservative in this area than the English version.

 

[NelliePledge]

This round table with RCGPs should include at least one of Dr Nacul Dr Speight and Dr Nina Muirhead

 

[Daisymay]

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.

 

[Sly Saint]

refused to remove CBT/GET on the grounds that patients can opt out of them and that 'some people find them helpful''

wonder where they got that from(?) sounds like a certain charity

 

[NelliePledge]

Something that is clear to me thus far from this debate: writing to your MPs really matters. Again and again, MPs are standing up and saying "I have been contacted by my constituents who said to me..."

It is absolutely vital that we continue to speak to our politicians. It is only through the effort of patients and families that this debate is even happening. This is true of every country, not just the UK.

If you are reading this and have not written to your representative, please do so now. If your representative has made an effort to address the condition, please thank them for their effort.

Yes have made this point on local Facebook group to try to promote advocacy

 

[Andy]

For anybody who wants to catch up/watch it again, this link will take you directly to the start of the debate, https://goo.gl/P7TFei

It will load initially at the start of the day and then 'forward wind' to the start of the debate, so leave it a second or two to do so.

 

[boolybooly]

Steve Brine is basically saying he doesn't see any need to make any changes or motions. He really doesn't get that people are being harmed does he?

"Everyone can deny any treatment they don't want" - except if they want benefits of course

If patients are sectioned or minors taken into protection and their parents threatened with prosecution their right to deny treatment is effectively denied them. That is part of the problem.

 

[anniekim]

Royal College of GP's includes education- ie online course on ME(

Does anyone know what the content of this course is like? Thank you.

 

[Cinders66]

Does anyone know what the content of this course is like? Thank you.

I’d imagine it’s very NICE like and severe lite. I’d be interested. As advocates we really need to learn about this

 

[Cinders66]

The minister talked a lot about GPs. Did he address the issue of medical school education?
He didn’t propose ways to reduce stigma so what makes scientists and drs want to research ME if as one said it’s known as Multiple or many excuses in the science world...... the CMRC was clearly the MRC way, without funds, of attracting researchers but it’s worked as Little as their highlight notice before

Anyway, what now. Did the vote change anything... what’s next move?

 

[NelliePledge]

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.

It’s a process of ramping up pressure to force it to a point where change happens. Most of the discussions happen behind the scenes but having debates is a way of showing the weight of interest and backing. The round table with RCGPs might actually achieve something if the right people are there. Notwithstanding the political independence of MRC etc if I was the Minister I would still be asking them informally to see what more they could be doing.

 

[Jonathan Edwards]

feeling how extremely powerless and ineffectual MP's are to change anything

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.

 

[Adrian]

Considering that it is not, and should not be, in the power of ministers to determine what research gets funded or what NICE recommends, the minister seems to have conceded about as much as he could. Certainly he seemed less combative than last time. Very little attempt was made to defend past decisions.

Whilst its not in the power to determine what is funded or what treatments are recommended I do think they have a responsibility to look at failures of the funding system such as why so little is funded (or why there are too few applications) or why the system funded PACE when its protocol wasn't up to answering the questions asked.

 

[NelliePledge]

Whilst its not in the power to determine what is funded or what treatments are recommended I do think they have a responsibility to look at failures of the funding system such as why so little is funded (or why there are too few applications) or why the system funded PACE when its protocol wasn't up to answering the questions asked.

This

 

[Cinders66]

B

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

 

[SallyC]

I hope that any reference to Cochrane's work includes reference to this note on the Larun exercise review:

It wasn't updated in the parliamentary briefing pack from the Commons
And they quoted funding figures for biomedical research which I think were wrong - I think they were inclusive of behavioural/psychological numbers too.

ETA I realise you all picked up on this early on, sorry.

 

[Hoopoe]

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.

Is it enough to stop the BPS people putting out the usual articles on good science being under attack by despicable activists?

 

[dave30th]

@dave30th: I really do think Brine needs calling out on this, because it is such a blatant cop-out from responsibility by his department, and I'm sure others I've heard in the past. Here in S4ME we are all pretty switched on, but we are not typical of the general ME population. A great many rely on the advice of medical professionals, because ... that's what people do when they themselves are confused and in need of help, and don't know where to turn to ... they turn to the obvious source of help. The last poor sod to know what is best for them is the patient, more often than not! And in any case, some of the medics would be persuasive anyway. Patients are so very vulnerable.

Brine really shows up how little his department understand or care. And he has done it very publicly. Unanimously carried, and he regurgitates bullshit like that. Tells its own story. Sorry, in rant mode.

I heard his little spiel. the idea that NICE is treated as just advisory is of course ridiculous

 

[anniekim]

Knackered so can’t write much but briefly thought the MP’s spoke v well overall, got across the stigma, that GET harms yet still in NICE guidelines, lack of biomedical research funding and that ME is a physical illness. Would have liked a bit more on psychs harmful dominance on ME and the discredited bps model but overall considering the amount of issues MP’s must study I thought they did a good job.

Under Secretary, Steve Brine’s response was I thought still woeful. After the MP’s unanimous portrayal of ME as a neglected physical illness, Brine still had to present the medical world as being divided bringing in the implicit suggestion the divide was reasonable.

As others said he got in the harmful trope that lack of biomedical funding was due to poor research submissions. Also dismissed concerns of CBT and GET by saying patients can refuse them, when we know reality is much more nuanced and harmful.

 

[SallyC]

Offered a Round table meeting with RCGPs......

If Carol Monaghan is present as invited then I don't think she'll just let them get away with the usual bluster; this could be very promising but I'll try not to get my hopes up!