How to follow up on the Carol Monaghan debate in Westminster

Following the stellar job done by Carol Monaghan at the debate today and the (IMO) PACE-defending, useless response from the minister, what should our next steps be?

People have mentioned some things but they're buried in the the pre-debate threads.

I'd like to know what Carol Monaghan thinks we should do next, actually...

 

From @ Binkie4 on another thread:

I have not been able to read the whole thread yet but wanted to insert here advice from our MP. We have worked with him before and approached him to invite him to next week's debate but he is unable to be there although he did attend Unrest.

He has however expressed an interest in being involved and suggested a way forward which I find valuable in that it demonstrates how the Parliamentary process may be effectively used.

MP's advice to us about a Westminster Hall Debate: "The main purpose beyond airing an issue is for an MP - in longer adjournment debates, several MPs - to ask a Minister questions, and try to elicit answers, “on the record.”

And then to enable others to follow up.

So could I ask you to scrutinise this short debate when it is published in Hansard online the next day, and share your thoughts with me? I can take a look myself too, but you are rather more informed, so your advice would be helpful.

The key things to look for are:-

* issues that weren’t raised but should have been
* Ministerial answers that might be positive, which need to probed further, to push the Minister/Department further in a helpful way
* Ministerial answers that might be negative - and that need challenging eg if the Minister repeats things which are wrong or contestable from the evidence/research

Depending on the nature of the issue, I can decide whether it’s best to chase with an email or letter.

So, sorry again that I can’t be there, but very keen to work with others to maximise the benefit of the debate going forward."

This seems a positive way to approach the debate which we will attempt to follow up, as might anyone else who is interested via their own MP. It would also mean that the views of many of us expressed via our individual MPs (hopefully) may reach the Minister.

It would be good to see the Minister deluged by our so very pertinent questions from our MPs.

I am working from a place much below par, so my work may be slow.​

 

Slight sideline from PACE but relevant:
I wonder if it might be worth asking about the Yellow card system, and why it can only be used for drugs and medical interventions. It doesn't seem to apply to psychological therapies.

I need to find the link again. But this seems very pertinent, if there is no way for GPs to report harms they see in their patients after the likes of GET, then there is no data collected, then they can say we have no evidence of harm..... etc.

 

It was encouraging but I got the impression that little progress was made. I don't think it was made clear that the "national strategy on CFS" as one could call it, has been a total failure and is being propped up by fraudulent or incompetent research (the most notable example being the PACE trial) that creates the illusion that everything is in order. Progress is impossible without profound change. 30 minutes isn't enough to understand all the important issues. This isn't just important for ME/CFS patients since the same kind of issues can and probably are plaguing other illnesses as well.

Putting more money into services and research will amplify the problem rather than alleviate it.

What I liked most about the debate was the call to suspend the NICE guidelines while they're being rewritten. Stop the ongoing harm.

 

From my point of view having caught up on the front bit here's my twopeneth:

• ram home the COI part and we can help by giving more examples of Insurance being declined (I have a juicy one from UNUM)
• Call for a government injection of cash for research to put wheels in motion for future generations. Obviously we need to specify the right type of research highlighting the areas of focus (not "structures" in the brain)
• Call for GET to be immediately suspended and provide more evidence for the harms from patient reports or anything else we may have
• Call to have all people with ME have their PIP claims reassessed

 

We should push for a further, lengthier debate as Nicky Morgan suggested. Securing a 1 or 1.5 hour debate would mean there is much more time to raise points and explore issues.

 

If someone could provide a transcript of the debate then that would be extremely helpful.

 

Won't Hansard do that?

If so, what's the timescale?

 

I'd like MP's to investigate the legal implications of:

1. NICE maintaining the present guidelines for the next two years without fully informing patients/doctors/physios/benefit agencies that they have already admitted they are not fit for purpose.

2. At present patients are't fully informed of the risks of CBT/GET. Under UK law on consent and GMC good practice guidelines, patients must be fully informed of risks prior to consenting to treatments. if they were fully informed patients wouldn't agree to these treatments and if doctors were fully informed they wouldn't prescribe them.

Investigate using these legal issues as leverage to get the present guidelines removed and patients protected

​

 

Answering my own question from here: https://hansard.parliament.uk/about

So it looks to me as though Hansard would cover it and maybe we can expect something today.

 

We crossed, Andy - I think Hansard will provide a transcript, probably today.

 

Thanks, I deleted my post as yours made mine pointless.

I think one thing to encourage would be for those people who contacted their MPs to follow up with them in some way. So, for those MPs who didn't attend, send them a message with a link to the video and transcript, highlighting a few key points and perhaps pointing out how the attention on this issue is just growing.

 

So I've been on the phone with the H of Commons enquiry line.........my question was
is there a way to know who attended the debate (as I thought it might be good to know who is 'in our corner'). A lot of going around the houses and eventually told that unless they actually spoke there is no written record (the first bit I already knew).
Hansard is usually available three hours after a debate (according to the person I spoke to) but most likely will only list speakers.

Anyone got any other ideas how to find out who attended? (I don't want to bother Carol Monaghan with it).

 

Cochrane is still a problem

 

Carol Monaghan delivered an amazing speech and debate and was well briefed on the important issues to all ME sufferers.

ACTION TO TAKE
We now need the national media to report on this. Scottish media have done a great job and London media should also report on and investigate this PACE scandal. Please help to circulate this.

1. Tweet to the main UK media Twitter accounts and/or individual journalists.
2. Contact the news desks directly. Tell them of the Parliamentary debate on the highly controversial PACE trial debate. Mention that it was stated amongst other serious issues by Carol Monaghan MP :

• "Over 1,000 patients wrote to me detailing similar experiences prior to this debate"
• QMUL spent £200k to keeping data hidden. Finally after long battle patients won court order to force PACE authors to release data. The results were exaggerated.
• Involvement of DWP and insurance industry in the PACE trial.
• "When the full details become known this will be put down as one of the biggest medical scandals of the 21st century!"

This is a major health and financial scandal that involves influential senior psychiatrists and needs reporting on. This major story should be covered today and preferably a larger investigation by the Investigations team by your newspaper.

The Link to the PACE trial Debate
http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59

Here are some contact details (email/phone). Contact other news outlets that you may have links with. The PACE trial was launched in a major media blitz in 2011 and so should the PACE Trial Scandal as debated today.

THE GUARDIAN
https://www.theguardian.com/help/contact-us

BBC
http://www.bbc.co.uk/news/10725415

DAILY TELEGRAPH
http://www.telegraph.co.uk/contact-us/editorial/

SKY NEWS
https://news.sky.com/info/contact-us

THE INDEPENDENT
http://www.independent.co.uk/service/contact-us-759589.html

 

Out of your list I think the Independent is the best bet. (BBC Scotland seem to cover ME issues more, but they have already done a lot recently).

@Nathalie Wright

eta: I think this (ie Radio Solent would be something to pursue/nurture)
see https://www.s4me.info/threads/interviews-on-me-on-radio-solent.2516/

eta 2: https://twitter.com/BBC_HaveYourSay

 

Totally.

 

https://twitter.com/user/status/965971982541041664

 

https://twitter.com/user/status/965971985686843393

 

It's more about the right people. I don't mind brain imaging studies, but expect the worst spin and shoddy methodology from PACE trial authors & friends.