Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

I have had a response from my MP who has confirmed that she will speak during the debate.
This is great news. She is a breast cancer surgeon, cuts through crap and takes no prisoners.
Great bullshitometer.

 

I know, .......teaching me with 20 of battling to suck eggs, but at least I can throw his expressed knowledge of ME and quote it to the CCGS, his CCG excuse my French....( bast**ds) who are tricky to say the least and with whom I am doing battle as I speak!

 

Geez what’s the point of writing to MPs for objective scrutiny if they’re going to reply bsck that and tell you how much a priority your highly debilitating illness is, with an array of treatments available it seems to be targeted to the individual, a glorious pick n mix of CBT and GET or GET alone or simply delicious CBT. I suppose if he goes despite not feeling he needs to make any Points, I mean what’s to say, he might still vote...

So the charities are calling for a parliamentary debate because everything’s going swimmingly

Edit it seems from above this might be standard fobbing off material added in by staff so maybe he himself has more knowledge

 

Had a response from Nicky Morgan to whom I had sent good wishes for the debate. She commented “ I hope we can do you and all other sufferers justice.” Good words.

She keeps popping up in Brexit so I had wondered if she might have other commitments. Glad to have it confirmed that she will be there tomorrow.

Do hope we have a good turnout..

 

Is this another thing that needs a new thread in order to gain attention?

 

The issue is his home CCGS are out of order and need to be put down with a firm foot! They are pushing for what patients don't want and they are running a fatigue clinic not an ME clinic. Sheep and goats.... And they are in charge of a contract covering 2.5 million population!

 

My MP (Scott Mann) won't be able to make it:

"Many thanks for taking the time to contact Scott regarding the ME Debate on January 24th.

Unfortunately, due to prior commitments, Scott is unable to attend the event. However, he will ensure to request a briefing.

In the meantime you may be interested to know that at Scott's recent surgery he met with a constituent who suffers with ME where they discussed in detail the effect of the condition which Scott is sympathetic too. They also discussed the treatment available and the MAIMES campaign which appears to be gathering momentum.

Please feel free to contact us again should you wish to discuss this further."

 

My MP said she had pre-existing commitments but would arrange a home visit with me to discuss ME and the issues around it.

 

Excellent.

 

I've just been re-reading the motion and thinking about it, and I think great care is needed with this bit:

"supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment".

It's important to make clear that this is a suspension of recommending GET/CBT as evidence based treatments, rather than a call for them to be banned. The NHS should not be spending money on homeopathy, or recommending it as an evidence based treatment, but at the same time individuals should be able to pursue and spend their own money on things without a legitimate evidence base.

I think it's important to be clear that this is about downgrading CBT/GET to the level of homeopathy rather than singling these treatments out with bans. I think that we can easily defend downgrading the recommendations of CBT/GET, and the debate about that measure plays to our strengths, but if this can be portrayed as an anti-patient choice measure then it would be far easier to make us seem unreasonable.

 

I had a look at "suspension" and the only recent example I could think of what the mesh implants. I'm personally happy with the wording in the motion BTW

Here is a link to reports the mesh implants and there are different terms used

https://www.bbc.co.uk/news/uk-scotland-45246761

and

https://www.bbc.co.uk/news/health-44763673

and NICE

https://www.bbc.co.uk/news/health-42110076

MPs would need to work out the details for this.

 

I've assumed this is very carefully worded. The government could not call for the abolition of CBT/GET, because it is presumably down to what NICE recommends, and has to be left down to NICE. But given the NICE guideline is being overhauled, I imagine this motion is doing what it can much more legitimately do: calling for CBT/GET to be suspended, given that a key reason the NICE guideline is being updated is due to concerns about such treatments. I think a motion that called for the abolition of CBT/GET would be sure to get voted down because it would be outside the prerogative of government, and deemed interference, but calling for its suspension holds much more water, hopefully much better chance of being voted for.

 

I agree with @Barry but I do think - given the BPSers usual tactics - that this is a very important point. It's late, but can anyone get this point across to any of the key players before the debate. Who has CM's ear?

 

Ways to watch live;
https://parliamentlive.tv/Commons
https://www.bbc.co.uk/iplayer/live/bbcparliament (UK only)
(The BBC Parliament channel can also be seen on Freeview, Channel 232; Sky, Channel 504, and Virgin Media, Channel 605, as well as other media providers.)

https://twitter.com/user/status/1088356002804785152




Moderator note: This post will be copied to create a new thread and subsequent posts discussing the debate once it has started should be posted there.

 

I'm going to have a go at live-tweeting the debate (technology depending), as I did for the Westminster Hall debate.

https://twitter.com/user/status/1088388366096306177


Hope that's useful for some.