Andy
Retired committee member
I assume you are thinking about what is discussed in this thread, FOI requests (to NICE, and NHSE&I): Materials pertinent to the decision by NICE to delay publication of the final guideline
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023
- Thread starter Binkie4
- Start date
-
- Tags
- afme foi nice guideline
Suffolkres
Senior Member (Voting Rights)
Yes. The exchange between NHS E and Gillian Leng/ Paul Chrisp..?
Last edited:
Suffolkres
Senior Member (Voting Rights)
To me,
'Sonya let me know that she has responded to you on Twitter about this, and you can now find a link to the report on our website here: https://www.actionforme.org.uk/news/foi-report-highlights-shocking-lack-of-specialist-care/
This is an Action for M.E. report which was shared, confidentially, with the APPG to highlight the issues still faced by members of our community following the NICE guideline.'
'Sonya let me know that she has responded to you on Twitter about this, and you can now find a link to the report on our website here: https://www.actionforme.org.uk/news/foi-report-highlights-shocking-lack-of-specialist-care/
This is an Action for M.E. report which was shared, confidentially, with the APPG to highlight the issues still faced by members of our community following the NICE guideline.'
Lucibee
Senior Member (Voting Rights)
Andy
Retired committee member
The headline, "Only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.",
is based on
"The number of patients on record with a diagnosis of ME/CFS and receiving care was indicated to be 21,927 people in total. This is likely below the number of people who are currently receiving care, as a number of respondents asked questions around numbers in primary or secondary care, and/or indicated that these numbers were estimations due to the lack of ability to adequately search for ME/CFS code on their system."
in the report which I don't think is exactly the same thing. Given that the FOI requests were sent to Integrated Care Boards (ICBs) and NHS Trusts in England, does anybody know if this would include GP records, as I suspect it wouldn't?
is based on
"The number of patients on record with a diagnosis of ME/CFS and receiving care was indicated to be 21,927 people in total. This is likely below the number of people who are currently receiving care, as a number of respondents asked questions around numbers in primary or secondary care, and/or indicated that these numbers were estimations due to the lack of ability to adequately search for ME/CFS code on their system."
in the report which I don't think is exactly the same thing. Given that the FOI requests were sent to Integrated Care Boards (ICBs) and NHS Trusts in England, does anybody know if this would include GP records, as I suspect it wouldn't?
Lucibee
Senior Member (Voting Rights)
... that number is from only 22 of the 162 trusts (1 in 7). They don't provide any info of what population % those 22 trusts represent. And there has never been any adequate confirmation of the 250,000 prevalence figure anyway (afaik it was based on fairly wide criteria [Holmes], and is now hopelessly out of date).
Here's that bit of the report:
page 4
I agree with above posts, this data doesn't support the claims that either 21,927 are receiving care, nor that 21% of all pwME have a care plan.
As far as the data goes, only 4673 have a care plan out of the estimated 250,000 - that's less than 0.2% of patients in the UK actually stated to have a care plan. The percentages can't be extrapolated from the few services that responded with data on this, as most don't have services and most services probably don't have care plans.
Crossposted with several previous posts.
Last edited:
Andy
Retired committee member
Thanks, my question was more coming from the point that I've seen people taking these figures as indicating that only approx 21k of the entire English ME/CFS patient population have a diagnosis at all, and I was trying to figure out why that would, or could, be an inaccurate interpretation.
Lucibee
Senior Member (Voting Rights)
It's really hard to know how to interpret this report.
It seems that many of the trusts (and AfME themselves) seem to have taken Q1 (Has [NHS Trust] implemented the NICE Guideline [NG206] on ME/CFS?) to also mean "Do you have an ME/CFS service?", when the guidance is relevant to *any* care received by a pwME at that trust. There are whole sections in the guidance on how people with severe/very severe ME should be cared for in hospital under any and all circumstances, safeguarding of children and vulnerable adults, primary care review (care and support plans), etc etc. which apply to all trusts, whether they have a dedicated ME service or not.
The response is woeful in the light of that.
But it might have helped if more targeted questions were asked... Such as, "Does [NHS trust] have policies and procedures in place for the care and consideration of people with ME (particularly those with severe or very severe ME)? If so, please provide a brief description", as exactly how they answer that question would be informative as to whether they really understand what the guidance is all about.
A yes/no answer to "have you implemented the guidance?" tells us precisely nothing about *how* (or even whether) they have implemented anything.
It seems that many of the trusts (and AfME themselves) seem to have taken Q1 (Has [NHS Trust] implemented the NICE Guideline [NG206] on ME/CFS?) to also mean "Do you have an ME/CFS service?", when the guidance is relevant to *any* care received by a pwME at that trust. There are whole sections in the guidance on how people with severe/very severe ME should be cared for in hospital under any and all circumstances, safeguarding of children and vulnerable adults, primary care review (care and support plans), etc etc. which apply to all trusts, whether they have a dedicated ME service or not.
The response is woeful in the light of that.
But it might have helped if more targeted questions were asked... Such as, "Does [NHS trust] have policies and procedures in place for the care and consideration of people with ME (particularly those with severe or very severe ME)? If so, please provide a brief description", as exactly how they answer that question would be informative as to whether they really understand what the guidance is all about.
A yes/no answer to "have you implemented the guidance?" tells us precisely nothing about *how* (or even whether) they have implemented anything.
I agree. This is a lost opportunity. All that's likely to have happened is some junior staff member will be asked to find out the answers, will contact the ME service if they have one and ask for the answers, and put that in without any consideration of whether the answers are accurate.
Hardly surprising, since that's what the report says on page 4
Yet the same figure is quoted as the number currently 'receiving care'.
As we know from experience, being recorded on our GP notes as having ME is far from saying we are receiving care.
Edit: And, as Lucibee says, this data is only from a minority of trusts.
Last edited:
The summary on the AfME page is just as bad with it's misuse of stats. Take these, for example:
• Only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
• Only one in five people with ME/CFS have a personalised care and support plan in place.
That is clearly nonsensical, since if only 1 in 10 are recorded, how can 1 in 5, ie twice as many, have a care plan.
They really need to make it clear what the denominator is for these percentages.
• Only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
• Only one in five people with ME/CFS have a personalised care and support plan in place.
That is clearly nonsensical, since if only 1 in 10 are recorded, how can 1 in 5, ie twice as many, have a care plan.
They really need to make it clear what the denominator is for these percentages.
Suffolkres
Senior Member (Voting Rights)
I am very concerned at the information lacking within this FOI; it makes no attempt to acknowledge the new Health and Care Act April 2022 or the consequences of this being enacted.
Where does one start with this report?
It's a gesture but deliverers little real info and meaningful data to practically move things on effectively..
It does not even reference these processes and this most fundamental change of governance April 2022 and July.
It does not explain NHSE priority and steer for ICSs on Digital and Public Health, ....nor the new buzz phrase 'Population Health Management' requirements .......... data and data analysis determining services......... incompatibility of differing data systems and poor understanding and use of these by GPs....
1.When was the FOI Issued? It should be stated within the report and I know the answer as the ICB told us about it! AfME reached out to Suffolk on 27th July 2022... a mere 26 days into our new ICB! The FOI came soon after.....
Bearing in mind that the ICBs only come into a legal responsibility as of the 1st July 2022...... the FOI was issued when no dust had settled on fundamental changes imposed by central Government NHS England on the CCGS previously steering the good ship....
2. NHS Trusts do not commission services, the CCGs did, now it's down to the ICS( 42 ICSs across England). Any joint responses from Trusts ICB will be muddled and will not deliver info needed. CCGs GP likewise after 1st July.
Last edited:
Dolphin
Senior Member (Voting Rights)
I agree that a big question mark exists over much of the data in this survey. But surveys like this can have a value in terms of getting media coverage, highlighting issues, etc. even if there are big problems with the specifics.
Though a group can be risking some reputational damage.
Though a group can be risking some reputational damage.
Suffolkres
Senior Member (Voting Rights)
It did a very good job using the report in the online Times version to raise awareness and highlight the plight of all ME patients especially those abandonned ones especially young and tube fed..... shame about print version which cut that essential message out.
Last edited:
rvallee
Senior Member (Voting Rights)
It would be more accurate to say that this is the % who report doing so. Which we know is often blatantly false and cannot be verified. Many have explicitly adapted their language and simply call their GET pacing, and would report following the guidelines. We've seen examples of that already.
The % with a care plan is basically fantasy considering that those plans won't actually treat anything. So this is a very misleading rosy picture, and it's still extremely awful. Having a plan is worthless if that plan is based on BS pseudoscience, or at best on willful ignorance.
I'd really like to know what those "plans" even look like. As this is coming from the clinics, again this is them saying so according to their own preferences, none of which can be verified. And more often than not, that "plan" is the same generic useless nonsense so it's more the idea of having a plan.
So those are claims from sources who systematically misreport, by their own admission mostly do not keep records of what they're doing, that would have to be taken at face value to be believed. And they absolutely shouldn't. Still, this is awful even with all the lying and fraudulent misreporting. But those are basically the words of people who make lying an integral part of what they do, up to and including their "treatment plans".
But of course the providers said they would do that so this isn't surprising. Laws and rules have no power, only people who enforce them do and if there is a theme to all of this, it's reckless indifference to basically everything they say and do.
The % with a care plan is basically fantasy considering that those plans won't actually treat anything. So this is a very misleading rosy picture, and it's still extremely awful. Having a plan is worthless if that plan is based on BS pseudoscience, or at best on willful ignorance.
I'd really like to know what those "plans" even look like. As this is coming from the clinics, again this is them saying so according to their own preferences, none of which can be verified. And more often than not, that "plan" is the same generic useless nonsense so it's more the idea of having a plan.
So those are claims from sources who systematically misreport, by their own admission mostly do not keep records of what they're doing, that would have to be taken at face value to be believed. And they absolutely shouldn't. Still, this is awful even with all the lying and fraudulent misreporting. But those are basically the words of people who make lying an integral part of what they do, up to and including their "treatment plans".
But of course the providers said they would do that so this isn't surprising. Laws and rules have no power, only people who enforce them do and if there is a theme to all of this, it's reckless indifference to basically everything they say and do.
Suffolkres
Senior Member (Voting Rights)
I think I may be able to shed a little light on NHS FT's thinking here,
'currently receiving care'.. but not necessarily for ME!
ME patients (as coded under SNOWmed by GPs- sometimes....)
and Care within the Foundation Trust...
and their Hospital admissions 'Hospitals Episodic Data' HED...( don't ask!.. )
as it is something which has concerned us with our Pathway journey negotiations and our Implimentation proposals and work to establish a 'NICE' service!
It came to light during August 2022 - so called ICS requirements (tasked by NHS E's new shiny H& C Act 2022 model) for Local Authority Public Health Joint Needs Assessment planning- for NHS Forward 5 year Plan...... and Commissioning for new services....
It's all about the data......
So Suffolk Public Health chose 'HED'. (See above) to determine those admitted to hospital coded for ME ( if they were lucky!) and the frequency in different hospitals, to establish a vague health related burden on Trusts who delivered 'care'. Mostly something incidental and unrelated but patients coded for ME.
NJS Foundation Trusts ICSs and Public Health (Knowledge & Intelligence....) have found a convenient peg and method which ticks their box but serves those with ME poorly.
Last edited:
Suffolkres
Senior Member (Voting Rights)
Data- lies, Dawn lies & statistics
're above. 'Care... ?
'Care and Support Plans'.
There needs a lot of unpicking within all this AfME/DHSC GRIP stuff, which is what we tried to get over to DHSC within implimentation exercise which we in Suffolk we were involved with.
(DHSC silence and lack of feedback has been deafening)..
If an area (formerly run by CCGs pre July2022 who did the commissioning) HAD an ME Service;
1.GPs would be 'more aware' and likely to 'code' patients before passing them on to Foundation Trusts.
(My husband diagnosed with ME by MDT 2006, and coded, hospital admitted in 2018 for unrelated condition (AFib) and recently for a cancer diagnosis.)
2. Hospitals Episodic Daya record this- 'code' Snowmed on hospital admission sometimes.... No matter what patient admitted for!
3. Thus areas with service will have higher 'HE Data' than one that doesn't.
4. So 'Hospital Episodic Data' in an area WITH specialist ME Service will be much higher than area which does not have commissioned referral service.
Obviously... not rocket science!
5. But new 'gurus'/partners appointed under 2022 Act-Local Authority Public Health - in the new commissioning arrangements within ICS, are puzzled, and have not worked this out!
6 Added to fact that GPs described in public on Board of ICS state GPs are 'notoriously poor at all this digital stuff'!
7. And, 'no data, no problem'! Sorted
8. AfME MUST seperate FOI data from Foundation Trusts with ICSs. Or a muddled understanding will be perpetuated.
're above. 'Care... ?
'Care and Support Plans'.
There needs a lot of unpicking within all this AfME/DHSC GRIP stuff, which is what we tried to get over to DHSC within implimentation exercise which we in Suffolk we were involved with.
(DHSC silence and lack of feedback has been deafening)..
If an area (formerly run by CCGs pre July2022 who did the commissioning) HAD an ME Service;
1.GPs would be 'more aware' and likely to 'code' patients before passing them on to Foundation Trusts.
(My husband diagnosed with ME by MDT 2006, and coded, hospital admitted in 2018 for unrelated condition (AFib) and recently for a cancer diagnosis.)
2. Hospitals Episodic Daya record this- 'code' Snowmed on hospital admission sometimes.... No matter what patient admitted for!
3. Thus areas with service will have higher 'HE Data' than one that doesn't.
4. So 'Hospital Episodic Data' in an area WITH specialist ME Service will be much higher than area which does not have commissioned referral service.
Obviously... not rocket science!
5. But new 'gurus'/partners appointed under 2022 Act-Local Authority Public Health - in the new commissioning arrangements within ICS, are puzzled, and have not worked this out!
6 Added to fact that GPs described in public on Board of ICS state GPs are 'notoriously poor at all this digital stuff'!
7. And, 'no data, no problem'! Sorted
8. AfME MUST seperate FOI data from Foundation Trusts with ICSs. Or a muddled understanding will be perpetuated.
Last edited:
Suffolkres
Senior Member (Voting Rights)
In answer to your question Andy, it might if CCGs and GPs had 'adopted', transitioned to recording under Smowmed codes for locally diagnosed patients referred on to specialist MDT service, some of which are hospital based some community based.
Hospitals would capture this code possibly from patients either addending a FT hospital based service or if patient was admitted to hospital for an unrelated event.
Last edited: