Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

Posts have been moved from 3 threads:
UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward
UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion
United Kingdom: Action for ME (AfME) news

I don't tweet so please excuse format. This is probably the coverage ( or part of it) that the above post referred to. Sonia Chowdhury tweeted early on Sun evening that she will be joining @TheTimesRadioUK tomorrow (Mon) morning at 8.15 to talk about the implementation of the Nice guidelines following FOI requests.
There will be a report on Action for ME's website on Tuesday.


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Sonya Chowdhury @SonyaChowdhury

Looking forward to joining
@TheTimesRadioUK, SheSh, @NICEComms,
#ShMyalgicEncephalomyelitis Guideline following freedom of info request to all England NHS Trusts/ICBs
5:41 pm · 28 May 2023
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13 Retweets;53 Likes; 2 Bookmarks

Katie@SockFoam 4h
Will there be a recording available?



Sonya Chowdhury @SonyaChowdhury 4h
I think you can listen after. When’s colleagues are back on Tuesday they will post a story and any link on @actionforme website

 

I have been asking about this for weeks..... kept very close to chest after shared with APPG...

 

Does anyone have access?

The Times: Thousands of ME patients ‘failed by shockingly poor NHS care’

National treatment guidelines published two years ago are still not widely implemented, says charity

 

What is available outside of the paywall

"Thousands of patients with a debilitating condition are being failed by NHS hospitals ignoring treatment guidelines, a report has said.

In 2021 the National Institute for Health and Care Excellence (Nice) produced guidance on how patients with myalgic encephalomyelitis (ME), a complex neurological disorder, should be cared for. However, thousands of people with ME, also known as chronic fatigue syndrome (CFS), remain unable to access specialist care.

Data released under freedom of information laws showed “shockingly poor and patchy provision”, according to a report by the charity Action for ME.

ME patients have fluctuating symptoms including prolonged fatigue, dizziness, muscle pain, gastrointestinal problems and “brain fog”. In very severe cases they become bed-bound and may need tube-feeding. Campaigners have fought to correct a misconception of..."

 

At first glance, it's a decent article. Try this link.

 

Report now written up. I accessed it via Adam, Twitter 'Broken Battery'
https://archive.is/2023.05.29-06083...-failed-by-shockingly-poor-nhs-care-8bbffrr9x

 

The problem is what Professor Mark Baker formerly NICE called 'the ME Mafia'!
NHS England is undoubtedly the main breeding ground for the above.. as evidenced from S4ME FOI to NICE summer 2021.
The Secretary of State DHSC need to get a 'GRIP' and deal with this...!

So now we have AfME Report consolidated we hope by the MEA Survey outcomes.
This is a Human Rights issue.

 

From the Times article

"Only 28 per cent of NHS trusts and integrated care boards (ICBs), the bodies responsible for health and care services in a local area, have implemented the Nice guidelines published two years ago."

"Only one in five people with ME have a personalised care and support plan in place, as recommended in the guidelines. Most trusts and ICBs held no information at all about their ME patients."

"Only one in ten (21,927) of the estimated 250,000 patients are recorded as having ME/CFS in the medical system."


And the start of the case study in the article

"Until she was ten and a half, Karen Gordon was a “fit, happy, energetic, lively girl, very intelligent, hard working at school, enjoying her social life”. After a virus she was “plunged” into the world of ME, her mother said.

Like one in four ME patients, Karen, now 36, cannot leave the house. She spends her days in bed, wearing a blindfold because she is so sensitive to light. ME has caused digestive problems and she is fed through a tube."

 

Sonya Chowdhury was also on Times Radio discussing it. They asked people to get in touch to give their experience of ME services in the NHS - email studio@times.radio

Can possibly get a bit of noise going, even if it’s on a station listened to by about 25 people an hour

 

https://twitter.com/user/status/1663099054132215808

 

Hmmmm... Action for ME need to sort out their media strategy. Well done them for getting an article about the report in The Times this morning, but if no-one can actually access the report until tomorrow (as Sonya has just told me), the news window is lost. ... unless they are planning another media blitz tomorrow?

eta: OK - it seems everything was all a bit last minute:
https://twitter.com/user/status/1663133369754959872

 

The situation outlined has been known to us in Suffolk, documented and predicted during NICE/GRIP/DHSC David Javid 'consultations' conversations etc since 2017.

We also identified a possible mechanism through NHS England's formal processes to challenge this inequality, iniquity.
DHSC know this because we advised them we were ready, able and willing to take up the challenge and Independant Reconfiguration Panel route on Suffolk.
Legal instruments must be applied.

First, via S4ME..???
an FOI to NHS England of all materials relating to NICE 2017 -2021 (2022/2023) plus GRIP DHSC emails and correspondence? Comments please?

 

For reference, WAMES asked Welsh Health Boards about implementation of NICE guidance last year: https://wames.org.uk/cms-english/nice-guideline-implementation-in-wales-update/

The response from Powys is ... interesting ... moreover because they have now completely removed all mention of ME or CFS from their website: https://wames.org.uk/cms-english/powys-health-board-defends-their-me-cfs-services/

 

Headline in my hard copy of the Times is a bit different from online which is https://www.thetimes.co.uk/article/" Thousands of ME patients 'failed by shockingly-poor-nhs-care'. 8bbffrr9x.

It's watered down and referring to hospitals not NHS.
Hospitals accused of ignoring ME advice

While most of the article is the same, there are omissions from the online one @Wyva posted.

1)"Until recently, many services offered a course of “graded exercise therapy” to ME patients, despite sufferers reporting that it frequently made things worse." This is omitted in the hard copy I have.

2)Also omitted completely is the case study which is a shame because it illuminates how severe the illness can be. There is no case study in the hard copy.

There may be other alterations but these are the two I can see. I have only been awake for an hour so am at my foggiest. Crashing too from a Saturday outing. The hard copy article without the case study reads much less sympathetically.

The online article has comments underneath and these are a problem. Are they accessible to anyone? We could do with some comments. Mr B is having a look. Cannot read another word.

eta: line 1 words added to it.
eta2: Mr B and I together added a comment but it is unfortunate that there were already numerous comments. I think it's important to get to this sort of article quickly in order to add a comment so as to reach more people. It did generate some support.

 

Looks like some jiggery pokery is going on.?

 

The part in bold seems quite high but I'm no expert. I wonder does it relate to 21,927 rather than a much larger group?

 

Well.......who is to say?

IMO, the online title is a lot stronger with words like "shockingly poor" in the headline.

The omission of the case study means that the severity of the illness isn't conveyed as strongly. In particular the mother who was interviewed talked about disbelief in the illness ( from memory). There is no equivalent statement about disbelief in the hard copy.

OTOH the stats are there, laid out in the article and it's very useful to draw attention to what is supposed to be happening.

I don't know how different editions of the paper are edited, and what influences this. SW has a new position. Cannot remember it.

I found this statistic ( 20% with a care plan) hard to believe. I have never heard of anyone with ME with a personalised care plan.

Apologies I am crashing. Cannot do anymore. So frustrating.

 

Well, my comment is I'm confused about what you are referring to. To my knowledge, the forum has never made any Freedom of Information requests, and most likely doesn't have the capacity to do so unless somebody steps forward to coordinate and progress any such effort.

 

SW on Board NHS England.....

 

I thought during NICE summer 2021 debacle an FOI was issued.. member 'Initial conditions' maybe, rather than a formal one from S4ME? I will check back.