UK Parliamentary debate today - Thursday 24th January 2019

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.

 

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.

 

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

 

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.

 

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.

 

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

 

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?

 

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.

 

B

but parliament did take exceptional measures on brain tumours, including allocating or insisting on funds to stimulate research

 

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.

 

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

 

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

 

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.

 

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!