UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

I missed the first half hour - is there any way to watch from the beginning?

 

The minister was sounding very promising at the beginning in terms of his understanding and attitude but was disappointing in what he was able to offer, IMO, at least on the spot.

I wonder if it's likely he'll go away and make better things happen. I don't know how much to expect from a minister at the end of a debate like this.

Big thanks again to Carol Monaghan.

 

Yes, the usual blah blah told in a charming manner.

 

https://goo.gl/m58HYA - click on link and wait for it to automatically skip to start of proceedings.

 

My impression, just from people's comments here, is that there's still a problem of deference to the UK medical Establishment, and an assumption that they can be trusted. Maybe it's time to start focussing more on the institutional problems which surround PACE? It wasn't just one bad study that was the problem, but also the response to criticism of PACE, the smearing of patients, etc.

 

That was amazing, so very validating.
Most of them get it, the minister was starting to get it, but I expect pressure will need to continue on him to make any real change beyond a bit of letter writing.

PACE is dead in the water though, and MS's reputation with it. Hansard should print commemorative souvenir copies.

 

Some of the speakers including Carol & Ed davey were absolutely great , especially in following iimes £20m call for research but the minister has largely just defended the status quo, peppered rather ironically with quotes about "unrest" which was all about challenging the status quo and yet still alluding to tessa jowells success. I have no idea if they're going to act on research funds or not and am pleased the movement by the government on brain cancer was referred to as contrast. I am also aware that there is behind the scenes talks of the MRC on funds with " our lot" which again is a rather odd situation for the CMRC charities to probably be involved in both movements at the same time, also as the CMRC being used as evidence of MRC action etc

. I was extremely moved by how caring some of the MPs were and thank them for bothering to spend their time on our cause but I guess the minister's response was essentially pre planned rather than responsive to what he heard, as were a lot of the comments.

What seemed very missing is that GPs have been taught to manage this illness as behavioural , which is very negative, so the whole care pathway is rotten. Medical training at degree level wasn't covered enough. The lack of referral on services and expert clinicians, especially for children wasn't really addressed

I felt Carol felt the fight needed to continue...

the £2.6m the MRC were quoted putting in in defence at the end afaik might well be biomedical research funds as £1.6m was put in 2012, were they saying what they'd invested or currently investing?. The utter joke is that that level of funding, in a climate where the charities are inputting on a low level, could possibly be considered fitting over a thirty year period to crack serious illness laying people to waste.

 

I really hope they consider that if that is how Sharpe responds to an MP, what it might be like for vulnerable patients whose lives are falling apart and who have nowhere else to turn.....

I also hope Sharpe will have annoyed them enough to have chipped some of that deference away.

 

All told I think this went very well. I've just sent an email to Jim Shannon to thank him for his contribution and to express optimism for the future.

I think the Minister's response at the end was as much as we can expect at this stage. He did seem sympathetic, and hopefully he will now go and see what he CAN do.

I think Carol Monaghan was amazing, and I'm confident that she won't let this go. Hopefully today marks a turning point? But I guess, it is only once we can look back on this from the future, that we will know whether it has been that point or not.

For now, I'm happy. Today was good. Exhausting to watch, but good. Ahhhh.

 

Today should really have been about action.