UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

On some days politics is existential!
But so is tennis today and there's no rule against tennis is there?
Nadal for champion!!! And that Ons lady is impressive.

 

Steve Barclay has been appointed to Health Secretary, so if anybody lives in his constituency then it would be worth sending him a message asking him to continue what Javid started.

 

I saw a letter to a constituent last night, a reply to being asked to support the Savid over his ME plans.

The new secretary backed the initiative by SJ 100%. It actually went into a bit of detail and he stated his reasons as to why a better way forward is needed. I've looked for it this morning and can't find but I'm sure it will appear on this board soon.

From ME Assoc. F/b

The new Health Secretary is Stephen Barclay. My MP, whom I contacted to ask about the Sajid Javid ME meeting. His response -


Good afternoon
Thank you for contacting me about the treatment of people with ME/Chronic Fatigue Syndrome (CFS) and the work of the APPG on ME.
As part of World ME Day, I was delighted to see my colleague Sajid Javid’s statement that he was “committed to better care and support for people living with ME and their families.”
These words will be matched by actions over the coming weeks. A cross-government delivery plan on ME/CFS in England will be developed with people with lived experience and published later this year. This delivery plan will align with other devolved nations where appropriate, for example the Scottish Government’s work on research into ME/CFS.
I understand that the delivery plan will build on the recently updated NICE guideline on ME/CFS and the comprehensive work of the All-Party Parliamentary Group on ME to date.
My colleague Sajid Javid also announced that he would co-chair a roundtable with the Department’s Chief Scientific Adviser – Professor Lucy Chappell – to bring together experts on ME/CFS to discuss ways of addressing the research priorities of people living with the condition. The Government is committed to funding research into ME/CFS, including through the National Institute for Health and Care Research (NIHR).
Thank you again for contacting me on this issue.
Kind regards
Steve
Rt Hon Stephen Barclay MP
Member of Parliament for North East Cambridgeshire

 

I've seen this promoted by a number of people on social media as being evidence of commitment to continue what Javid started. Importantly, the person who posted it in a comment on an MEA FAcebook post started it by saying "The new Health Secretary is Stephen Barclay. My MP, whom I contacted to ask about the Sajid Javid ME meeting." and they included the time and date stamp for when they sent their message to Barclay, which was "Sent: 16 May 2022 17:35".

So my interpretation would be that this is a reply recevied from Barclay back in May, and while it is good to see him uttering words of support back then, it is no guarantee he is in support now.

ETA: Link to the MEA Facebook post where the original comment can be found, https://www.facebook.com/meassociat...ubbC6zSMrTTHnqwupCqdYS1iPndqEXqV2JjTgYQ3g323l if people want to look at the original themselves.

 

No. But he would have to answer as to what led him to change his mind, should he do so. Evidence would help, though it is rarely considered necessary.

 

For anyone not familiar with what is going on in the UK, the change in Secretary of Health & Social Care (SoHSC) is part of a wider crisis in the UK Government which is leading to major instability both within the administration itself and in the ruling Conservative Party as a whole. How this will resolve is unclear but any holder of the SoHSC brief is unlikely to be able, even if they are willing, to give the attention to ME/CFS that Sajid Javid has - there's simply too much happening politically to expect that anything but headline problems will get the SoHSC's attention.

The important thing now is for pressure to be maintained on the civil servants and NHS leadership who were charged by Javid to take things forward, to keep up the momentum. So far the more junior politicians at the Dept H&SC all remain in post: Our ministers Lord Kamal perhaps being the most relevant for ME/CFS. A lot now hangs on Forward for ME maintaining their influence.

 

Just looked up his constituency is North-East Cambridgeshire. It looks like Cambridge has a support group too but don't know much about that part of the world and whether that will likely cover it/have many from there. Or if they know him already to give an idea?

 

Fronm Health Service News

Steve Barclay is NHS leadership’s worst ‘nightmare’
By Alastair McLellan6 July 2022


Never has a politician arrived in the post of health secretary trailing a worse reputation among NHS leaders than Steve Barclay, writes Alastair McLellan.

 

Hancock was from around Cambs, he wasn't very supportive.

 

Do you have a Link for that please?

 

It is here

https://www.hsj.co.uk/comment/steve-barclay-is-nhs-leaderships-worst-nightmare/7032754.article

but you need to register to read it.

 

Done, Registered, Reading. Thank you.

What a horror story. Hope he doesn't last long.

 

Sadly I no longer have subscription.

 

My (informed) opinion is that the DHSC sees this a project they are going to continue with or without SJ. Ministers are too busy to run these sorts of things closely anyway. They set the ball moving and bureaucrats do the day-to-day project management.

We should assume it's going ahead for now. It can now run independently of any new ministers. The bigger issue will be if there's a snap election and the Tories lose.

Though, frankly, what we would lose then would be offset against what we might gain: investment in the NHS, an end to creeping privatisation and a fairer welfare system, for example.

The last 12 years have been a shitshow for disabled people (and, well, anyone who needs healthcare, food, heating, education, or even such pesky things as human rights).

 

At some point in advance of the next election, or within the campaign should the election be imminent, we would need a concerted campaign to get all Parties onside - it's an opportunity for grass roots activism - issues previously discussed here: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/page-4#post-409541

 

I agree there. The good news is that the APPG has cross-party support, so I think, in theory, we can get it. Also, they like to support NICE.

 

I have just been reading thread https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/page-4#post-409541, mentioned in #274 by @CRG, some of which I missed earlier.

I think it's very relevant to be thinking what we can do now individually. Grass roots activism if you like. I am not an expert on our political system in any way or grass roots activism either but am a supporter of using our MPs to greater effect. I am currently fortunate to have a very responsive MP but that hasn't always been the case.

During the period 2015-7 when a different party held the seat, we still managed to involve our then not very effective MP in writing to the University of Bristol re Esther Crawley's research. He wanted our vote. Several decades ago in respect of a very different issue , we pursued an issue persistently ( via an MP with whom we had no connection) and managed to get a letter into the Education Secretary's red box. I even had a phone call one afternoon from a senior civil servant about this issue confirmed by letter. It concerned a policy which negatively affected one of our children and there is nothing which motivates a parent more than the welfare of their child.


Template letters maybe have their place but I think an individual letter to an MP or organisation like Nice carries far more weight and achieves a lot more. It takes energy which with ME is in short supply but worth the effort if at all possible. Persistence and a never give up attitude.

I'll get off my soapbox. Am still waiting for a reply from Lord Kamall via my MP.

 

UK government due to go down by supper time I think.
Whether a new leader will shuffle again, who knows?
There is likely to be a major clearout I think.