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

rvallee said:
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.
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I total agree with all your points. Things must move on.

We are hoping to buck the above trend though here on Suffolk.. ( Well the Suffolk minus Waveney Suffolk) who are the dark side with Norfolk!
Our draft Care Plan will be released when signed off we hope soon. We and NHS MANGER have consulted widely with those covered under our Terms of Reference, 25% GROUP VIA TONY AND HELEN B... OTHER GROUPS, MEA, Individual trusted clinicians, NICE Guideline Development Group for example.
 
I'm still trying to get my head around the figures. AfME's use of numbers and percentages is highly misleading, since they seem to choose the denominator at random and not specify 'percentage of what...?', and extrapolate wildly in both directions in their conclusions.

Overall
Total authorities contacted 162
Response/acknowledgement 109
Responses with data 90
_________-
Implementing the guideline
Yes 25
No 6
Information not held 23
No ME/CFS service 37
No response 71
______________
Patients receiving care
No. of trusts with ME/CFS services that can provide data 22
No. of patients diagnosed across the UK 21,927 (from the 22 services)
ME/CFS services but unknown number of patients 6
Not applicable 135
_____________

Have a care plan
No. of patients with a personal care and support plan 4,673
Percentage of patients in 22 Trusts that provided patient numbers 21.31%
ME/CFS services but unknown number 6
Not applicable 141
____________

The current population of England is approx. 56 million.
If we assume the commonly quoted 0.4% have ME/CFS, that's about 220 thousand with ME/CFS.
The 22 authorities averaged saying they are each treating 1 thousand pwME.
So the total, if all were the same size and all were diagnosing and treating pwME at the same rate, would be about 160 thousand diagnosed with ME in England.
Let's say then that there are about 160 to 220 thousand pwME in England.
_____________

I am particularly concerned about the claims in the media and headline figures in introduction to the report.
They say in the introduction to the report:

Shockingly, only 28% of NHS Trusts and ICBs have implemented the 2021 NICE Guideline. Fewer than one in four NHS Trusts/ICBs are able to track their ME/CFS patients and two thirds of NHS Trusts and ICBs hold no information whatsoever on their ME/CFS patients.
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Should say:
Shockingly, only 28% of NHS Trusts and ICBs which provided data say they have implemented the 2021 NICE Guideline. This represented only 15% of the total 162 trusts.
Fewer than one in four NHS Trusts/ICBs which provided data are able to track their provide the number of ME/CFS patients. This represents only 14% of the total 162 trusts.
and two thirds of NHS Trusts and ICBs which provided data? hold no information whatsoever on their ME/CFS patients. [not clear where the 2/3 comes from]

This was reinforced by the fact that only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
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This was reinforced by the fact that only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
Nonsensical figure, since it only comes from 22 out of 162 authorities.
More honest to say this.
My version:
Only 22 of the 162 trusts were able to provide patient numbers, representing only about 22,000 of an estimated 220,000 people with ME/CFS in England.
As an example, the data shows that only one in five people with ME/CFS have a personalised care and support plan in place. Worse still, one quarter of NHS Trusts/ ICBs with ME/CFS services inexplicably do not know whether their patients have a personalised care and support plan in place. This must be information kept as standard.
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As an example, the data shows that only one in five people with ME/CFS from the 22 Trusts with ME/CFS services and providing data have a personalised care and support plan in place.
Worse still, one quarter of NHS Trusts/ ICBs with ME/CFS services inexplicably do not know whether their patients have a personalised care and support plan in place. This must be information kept as standard.
 
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I would guess that most of the 4673 patients counted as having a care plan in the 22 authorities that provided patient data were from children's services, since they will be most likely to use care plans because care isn't just down to the therapist and patient, but also involves parents, schools, and in some cases safeguarding authorities.

One further point.
25 trusts say they have implemented the guideline. I think AfME should have contacted each of those 25 trusts asking for more information on what services they provide and doing a more in depth check, not just taking their word for it.
 
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Trish said:
I'm still trying to get my head around the figures. AfME's use of numbers and percentages is highly misleading, since they seem to choose the denominator at random and not specify 'percentage of what...?', and extrapolate wildly in both directions in their conclusions.

Overall
Total authorities contacted 162
Response/acknowledgement 109
Responses with data 90
_________-
Implementing the guideline
Yes 25
No 6
Information not held 23
No ME/CFS service 37
No response 71
______________
Patients receiving care
No. of trusts with ME/CFS services that can provide data 22
No. of patients diagnosed across the UK 21,927 (from the 22 services)
ME/CFS services but unknown number of patients 6
Not applicable 135
_____________

Have a care plan
No. of patients with a personal care and support plan 4,673
Percentage of patients in 22 Trusts that provided patient numbers 21.31%
ME/CFS services but unknown number 6
Not applicable 141
____________

The current population of England is approx. 56 million.
If we assume the commonly quoted 0.4% have ME/CFS, that's about 220 thousand with ME/CFS.
The 22 authorities averaged saying they are each treating 1 thousand pwME.
So the total, if all were the same size and all were diagnosing and treating pwME at the same rate, would be about 160 thousand diagnosed with ME in England.
Let's say then that there are about 160 to 220 thousand pwME in England.
_____________

I am particularly concerned about the claims in the media and headline figures in introduction to the report.
They say in the introduction to the report:


Should say:
Shockingly, only 28% of NHS Trusts and ICBs which provided data say they have implemented the 2021 NICE Guideline. This represented only 15% of the total 162 trusts.
Fewer than one in four NHS Trusts/ICBs which provided data are able to track their provide the number of ME/CFS patients. This represents only 14% of the total 162 trusts.
and two thirds of NHS Trusts and ICBs which provided data? hold no information whatsoever on their ME/CFS patients. [not clear where the 2/3 comes from]


This was reinforced by the fact that only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
Nonsensical figure, since it only comes from 22 out of 162 authorities.
More honest to say this.
My version:
Only 22 of the 162 trusts were able to provide patient numbers, representing only about 22,000 of an estimated 220,000 people with ME/CFS in England.

As an example, the data shows that only one in five people with ME/CFS from the 22 Trusts with ME/CFS services and providing data have a personalised care and support plan in place.
Worse still, one quarter of NHS Trusts/ ICBs with ME/CFS services inexplicably do not know whether their patients have a personalised care and support plan in place. This must be information kept as standard.
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Clear concise timely analysis.
Bet you have received no fee for this work Trish...!?
Wonder what funds were spent by AfME in securing this third party piece of confusion?

It is nearly as 'poor' as the topic Paper locally commissioned by ICS Medical Director last August, from local authority Public Health, Joint Needs Assessors.... so called 'Knowledge & Intelligence!' alledgedly about CFS/ME amd related conditions... MUS et al......
 
rvallee said:
I'd really like to know what those "plans" even look like.
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I could show you mine, which I was asked to sign around 10 years ago to confirm that it had been issued.

It contained my name, address, date of birth, and NHS number. No diagnoses, no medication details, no record of the fact that I'm a wheelchair user. All the pages except the patient ID section were blank.

I pointed out that I couldn't sign it until they'd completed it, and that was the last I heard. I wonder how many people did agree to sign a sheet of paper with their name and address on it and are now registered as having a care plan.
 
Kitty said:
I could show you mine, which I was asked to sign around 10 years ago to confirm that it had been issued.

It contained my name, address, date of birth, and NHS number. No diagnoses, no medication details, no record of the fact that I'm a wheelchair user. All the pages except the patient ID section were blank.

I pointed out that I couldn't sign it until they'd completed it, and that was the last I heard. I wonder how many people did agree to sign a sheet of paper with their name and address on it and are now registered as having a care plan.
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Symbolically accurate. Lots is made about "goals". I assume that for those "plans" that aren't merely blank pages, they are simply goals. Which is like having a plan out of poverty that consists of "don't be poor". Or a blank piece of paper. Works just the same.

We are seeing a system devoid of any accountability, showered with funds, that never delivers anything, no one even expects them to. Any system built like this ends up the same everywhere: failure. Accountability is what makes professionals professional.

And you know, I'm cynical enough to think that since they gave you a plan, it would be marked as such and be counted in this survey. Everything we've seen so far suggests this is almost guaranteed. Everything they do is symbolic and no one can tell the difference anyway. If they even keep records.
 
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Trish said:
I'm still trying to get my head around the figures. AfME's use of numbers and percentages is highly misleading, since they seem to choose the denominator at random and not specify 'percentage of what...?', and extrapolate wildly in both directions in their conclusions.

Overall
Total authorities contacted 162
Response/acknowledgement 109
Responses with data 90
_________-
Implementing the guideline
Yes 25
No 6
Information not held 23
No ME/CFS service 37
No response 71
______________
Patients receiving care
No. of trusts with ME/CFS services that can provide data 22
No. of patients diagnosed across the UK 21,927 (from the 22 services)
ME/CFS services but unknown number of patients 6
Not applicable 135
_____________

Have a care plan
No. of patients with a personal care and support plan 4,673
Percentage of patients in 22 Trusts that provided patient numbers 21.31%
ME/CFS services but unknown number 6
Not applicable 141
____________

The current population of England is approx. 56 million.
If we assume the commonly quoted 0.4% have ME/CFS, that's about 220 thousand with ME/CFS.
The 22 authorities averaged saying they are each treating 1 thousand pwME.
So the total, if all were the same size and all were diagnosing and treating pwME at the same rate, would be about 160 thousand diagnosed with ME in England.
Let's say then that there are about 160 to 220 thousand pwME in England.
_____________

I am particularly concerned about the claims in the media and headline figures in introduction to the report.
They say in the introduction to the report:


Should say:
Shockingly, only 28% of NHS Trusts and ICBs which provided data say they have implemented the 2021 NICE Guideline. This represented only 15% of the total 162 trusts.
Fewer than one in four NHS Trusts/ICBs which provided data are able to track their provide the number of ME/CFS patients. This represents only 14% of the total 162 trusts.
and two thirds of NHS Trusts and ICBs which provided data? hold no information whatsoever on their ME/CFS patients. [not clear where the 2/3 comes from]


This was reinforced by the fact that only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.
Nonsensical figure, since it only comes from 22 out of 162 authorities.
More honest to say this.
My version:
Only 22 of the 162 trusts were able to provide patient numbers, representing only about 22,000 of an estimated 220,000 people with ME/CFS in England.

As an example, the data shows that only one in five people with ME/CFS from the 22 Trusts with ME/CFS services and providing data have a personalised care and support plan in place.
Worse still, one quarter of NHS Trusts/ ICBs with ME/CFS services inexplicably do not know whether their patients have a personalised care and support plan in place. This must be information kept as standard.
Click to expand...

FOI questions to be asked ?

10 points to argue with your local ICS/ Foundation Trust service provider?

Revisiting my 'NICE files' and our input 2017-2018. This was our stakeholder checklist Jan 2018 Scoping Meeting.

Point 2 and point 5.
It references the 2003 and 2004 Acts; Community Health & Standards plus.
Long Term.Conditions Framework core requirements as well as Health Inequalities.
It strikes me the 10 points identified within the NICE Scoping, now also apply to NICE Implimentation by DHSC, NHS E as well as SNEE?
 

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Kitty said:
I could show you mine, which I was asked to sign around 10 years ago to confirm that it had been issued.

It contained my name, address, date of birth, and NHS number. No diagnoses, no medication details, no record of the fact that I'm a wheelchair user. All the pages except the patient ID section were blank.

I pointed out that I couldn't sign it until they'd completed it, and that was the last I heard. I wonder how many people did agree to sign a sheet of paper with their name and address on it and are now registered as having a care plan.
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lol i know its not funny really but that really made me laugh, its like a Monty Python sketch
 
I see from posts on fb a suggested action and care plan consisting of: diagnostic letter from a consultant which spells out that the disease is real not psychogenic, (and is re-issued via review appt every 2-3 yrs, as this is required by DWP), this letter with best and latest advice on how to prescribe for symptoms.

It also needs to include importance of pacing and not pushing through, and how symptoms can fluctuate. An accompanying much shorter letter, spelling out that PEM comes with the disease, is harmful and strongly associated with deterioration and needs to be managed by Pacing (capital P superscript ME/CFS) to distinguish it from pacing as in lets not overdo it walking now the cast has just come off your broken leg.

Pacing needs to be spelt out at mental, physical, emotional, sensory overload or it doesnt make sense to those who dont know the disease. The third is a standard letter for A and E care which includes that the disease is biomedical, that assisted nutrition can be needed in severe cases and considerations for anaesthesia and post op.care.

Last a standard annual review grid of ME symptoms by system for patient to highlight what they are dealing with and how urgently it needs doctor’s attention, with a very brief indication of overall severity/disability level summary.

This (assuming the patient then in writing pre-emptively consents only to be seen and treated by those who regard the disease as biomedical)provides - a cohort of patients consistently diagnosed by a Consultant, potentially suitable to particupate in research, statistics recorded for use in resources decisions, patient has vital documentation for HR, UC, PIP, and all other disability accommodations and provision, GP has guidance on best symptom management and is made aware living with a high number of symptoms is to be expected.

GP can see at a glance how disabled patient is and what needs attending to urgently, and can see deterioration or improvement by comparing identical annual forms, and can see the vital information at a glance about the problems this patient will have in accessing healthcare, for example can they even get to appointments.

A useful addition would be links given to patient for where they can access support groups or psychological therapies, and perhaps a group or short course on pacing effectively. What would others suggest is needed?
 
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At the most basic level, I was shocked at how many authorities ticked not applicable, as though the care of people with ME wasn't their responsibility.

More generally, where there are ME/CFS or LC clinics they seem so pleased with themselves. If you strip out the harmful stuff, the harmful theories behind them, all they are offering is support services, maybe similar to what's offered in Maggie's Centres for cancer. Nothing like the consultant led MEDICAL services for comparable chronic diseases, monitoring patients at least twice yearly, testing, adjusting medication.
 
Kitty said:
I could show you mine, which I was asked to sign around 10 years ago to confirm that it had been issued.

It contained my name, address, date of birth, and NHS number. No diagnoses, no medication details, no record of the fact that I'm a wheelchair user. All the pages except the patient ID section were blank.

I pointed out that I couldn't sign it until they'd completed it, and that was the last I heard. I wonder how many people did agree to sign a sheet of paper with their name and address on it and are now registered as having a care plan.
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@Kitty

That is awful. But I suspect it is standard practise.

For a pwME, the phrase " under a doctor's care" can mean nothing. There's nothing they can do, but somehow, this is still seen as, or labeled "care".
 
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It's very disappointing, but not surprising that the NICE guidelines are being ignored.

If there was a biomarker, or a biomedical medication, hopefully things would be different.

ME is horrific, but there is nothing doctors or pwME can grab onto as far as treatment goes. It's like boxing with shadows.

Nonetheless, it's vital that ME is recognized as a serious biomedical disease, and that pwME are counted, and supported in all medical systems.
 
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