UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Anyway I have a philosophical strongly-held belief, not merely an opinion, that I deserve treatment for my ME which is biologically tested and medically proven to work

I want NHStreatment which is not BSP or psychological.

https://www.equalityhumanrights.com/equality/equality-act-2010/your-rights-under-equality-act-2010/religion-or-belief-discrimination#:~:text=Religion or belief discrimination is,of a rule or policy.

I’m thinking of suing.

 

Sure I'm reinventing the wheel here - what would you tell a researcher new to ME/CFS (heads up) - the PACE debacle and how the community has been repeatedly scammed - the APPG which held the line that yes some people did benefit from GET & CBT --- Then you'd say "how do you propose to address those concerns?".
You wouldn't simply give them £90K to revisit those painful experiences - re-do entirely pointless research.
As Jonathan* pointed out - what happened to one of his best trainees -- and as @TheBassist replied "culture*" - but surely the point of the prolonged & expressive education is to skip the culture and design in objectivity?
Whatever about the university pocketing £90K for some questionnaires' - it's the body commissioning it which should be held responsible - nil points!
@rvallee gave Paul Garner an alterative retirement speech - part of it probably apply here too!


*https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-18#post-524210

 

I've only been able to skim this so far but athat has clarified a few of my queries, but these issues shout out to me:

Each and every review of the care plan is a new CONSENT point.

Here the patient is providing all necessary information to the clinician.

This is the point where the clinician provides the patient with the relevant information, material risks, impartial, alternative views, blah blah in order for the patient to be able to decide to consent or otherwise.

Not "My information needs - What would you like to know..."

Very aware that I'm beginning to sound like a stuck record. So here it is Decision making and consent - professional standards - GMC (gmc-uk.org)

If I've managed to do a multiquote now my brain is a bit clearer, I shall celebrate with a hobnob.

 

Let's see if I can remember how to do it next time!

 

I think my biggest concern is the inclusion of severe patients in any outcome measure, since no research has taken place looking at how activity management a la crawley/gledwell et al will affect that patient group. Unless I'm wrong and there has been. What does the ethics approval on this say? Because there seems to be at least one symptom that nobody knows about 'cause nobody's ever asked - the left hand swerve.

 

There isn't any research for any group as far as I know.

The whole approach is alien to me as a physician. I only met anything like it during my period of training in a rehabilitation centre forty years ago. The whole concept of treatment being 'agreed' with the health care professional is spooky to me. I would offer treatments to patients and be pleased if they were keen to try them out. If they stopped using them that was their privilege.

The whole 'agreement' thing sounds like a Girl Guide Camp I am afraid.

 

There are probably more as noone asks .
Discussions here on symptoms flag up different manifestations of various symptoms and at times a reassurance that other people get the same thing as it's not described well / at all in literature .
How symptoms differ or are only associated with PEM is another lost opportunity.

 

It sounds much more sinister than that to me, especially for people who depend on welfare for all of their income. Clinicians can write anything they like on a patient's medical record, which they (the patient) then has to depend on as evidence for claims.

 

We know that pwME are considered disagreeable, and resistant to “treatment” by healthcare professionals particularly ones of the BSP persuasion. I think that’s why the “agreement” part is ringing alarm bells.

Many of us were asked to “agree” to do something we didn’t want to, otherwise be marked as “disagreeable” and not wanting to get better= malingering. Are you agreeable or a malingerer? Do you want to get worse or get written off? That was the choice.

Also a good 10 years ago there was an awful trend with GPs, Consultants etc where they were told to ask the patient what they want/expectations/outcomes. It always felt to me like a weird passive-aggressive move to “turn it round back on you” I usually answered along the lines of “I’d like you, a medically-trained professional, to examine the issue and give me advice or treatment” as that is pretty much what I want from any such interaction. It seemed to peter out in recent years (thank goodness). So this “agreeing” could also be a relic of whatever attempt at patient engagement/expectation management drive that was?

 

It mostly looks copied from addiction rehabilitation programs. Which is completely inappropriate here, but in light of how we are described, it certainly fits as coming from the same place.

 

How many times will this wheel be re-invented?

NICE published its Baseline Assessment tool in 2021 (Baseline in the classic sense, not the “establish your baseline”sense)

BACME has this guide updated 2022

PROMS 23-24

all totally different

Can I get any HCP to treat me with any of the above? No.

 

OK so I have noticed the BACME severely affected guide has a section on outcome measures: BACME-Severely-Affected-Shared-Practice-Guide.pdf

on page 42-43

These include sections on:

- why use outcome measures?

- PROM

- CROM (clinician reported outcome measures), for which there is a link to: Therapy Outcome Measures for Rehabilitation Professionals 3rd ed Pam Enderby and Alexandra John. J&R Press: Therapy Outcome Measure User Guide and Scales - J&R Press (jr-press.co.uk)

- patient satisfaction (which also mentions the NHS family and friends test)


EDIT to add: NB this is new from March 2024

 

The PROM section:

"6.2 PROM (Patient reported outcome measure)

The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006, despite this central collection of data no longer being operational.

Commonly used measures include:

SF36 Chalder Fatigue Scale

Pain severity measure

Clinical Global Impression Scale (CGI)

Hospital Anxiety and Depression Scale (HADS)

pHQ9 Depression Questionnaire EQ5D 5L

Self-efficacy measure


BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services. Services reported a range of strategies to make it easier for severely affected patients to complete questionnaires including allowing patients to complete the questionnaires over several weeks, rather than on the same day and assistance from a therapist or carer (for example, to read out questions and to write down answers)

Severely affected patients vary greatly in their level of function and their initial therapeutic goal. It is not always possible to measure meaningful change using a standard PROM and some services consider an individually agreed goal as a measure of achievement is more meaningful for the patient and the clinician."

 

It does seem very clear that these PROMs are designed to allow rehabilitation therapists to continue with their habit of setting a goal and judging the efficacy of their treatment on the achievement of the goal - an entirely invalid exercise. It is all very disappointing.

 

I believe the BACME guidance says something at the front that AforME and the MEA have contributed/approved? I can’t find it now, maybe I’m mixed up.

 

It is the classic putting us under rehab without treatment, as if that makes it any different to the old guideline issue ("no treatment based on the principles of false beliefs and/or deconditioning" = re-education and re-enablement, we have thesauruses too)

I am starting to think - and it would be useful to know where to put this - that we do need a 'jigsaw pieces' putting together page because this one relates to BACME pages, but also severe, and affects hospital as much as clinics and care support.

I have noticed a lot of changes/initiatives/developments suddenly 'being released' over the past months from 'the old school' that jigsaw together (the new rehab assocation/college, the new PROMS measure, the ICB care stuff that @Maat posted recently, BACMEs updated documents, what seems an attitude in hospitals which could be being influenced potentially by guidance from eg royal colleges in reaction to new guidelines, or could be about FND guidance (I don't know))

It feels like a structure or infrastructure is being / has been planned out over the last few years that we need to be visually putting together how it interlinks between each piece.

I think it is important - before it concretes - to visualise and be able to succinctly show how these elements are creating environments or systems for pwme at different severities and needs (whether just by co-opting them into 'generic systems' eg rehab without 'exemptions' for the condition by putting them under 'chronic illness'). SO that we can see and show it mapping out.

There is an element of how much genuine input from qualified patient experience and expertise and how much these have been 'genuinely from the spirit of the new guideline' vs parsing phrases in it for each too that would be useful to note.

I'm sure there will be pieces of research that probably feed into those, but at this point I just want to 'contextualise' how pertinent these individual aspects actually are going to end up being in keeping things that might need to change from being changeable.

Or to understand the gap in the measurements needed. Because recent news certainly makes it clear that 'not measuring at all' or 'leaving it to people running things to pick their own and mark their own homework' isn't an alternative either.

EDIT: I wouldn't know how to structure it, because there are elements of 'what has happened' that are about 'not changing' ie it starts with certain clinics who from the get-go said they would be refusing to change like King's COllege LOndon by saying 'we don't treat ME/CFS anyway so it doesn't apply - we treat CFS/ME'. And whether new clinics have cropped up or old ones subsumed into being combined with Long COvid etc.

I do think perhaps there is a bit of chronology here?

 

The posts in the following thread are particularly disturbing when you add it in: UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment) | Page 29 | Science for ME (s4me.info)

I hope @Maat won't mind me quoting:
I've just re-read the white paper and it introduces the new SDG as one group specifically for those with severe disability. As you say, the purpose is automatic without the need for assessment process. So as I read it, as there is only one SDG, not one for automatic and one for severe illnesses which are adjudged as capable of coping with the normal assessment process. Therefore, whatever your illness, if it is classed as severe then where it states:

"Syndromes characterised by chronic pain and fatigue
syndromes characterised by chronic pain and fatigue where symptoms are longstanding, affect multiple activities of daily living (ADLs) and confirmation that all treatment options provided by specialist pain and fatigue services have been exhausted" [my bold]

 

this feels like it could operate in an inverted way: if GPs (the medical part) are told to refer to clinics on the claim they are 'specialist' but they aren't medical and can only do 'rehab' which isn't appropriate because that is only safe for those who are being medically treated

and then GPs are being told back from these clinics their 'status' which isn't actually based on anything medical but all 'rehab terms' then it gets entered as if it is medical

because noone is being up front that these clinics are basically operating like for any other condition or disease the 'add-on rehab' they might get sent to by/after the medical clinic after/during treatment.

It just feels like a potential way of skirting some pretty clear guidelines to implement the same orthodoxy not via the medical but get the rehabbers to do it this time then report back in terms that are then entering into the medical record?

Shouldn't clinics that don't offer medical care really be required to be called 'Rehab clinics' and to abide by only taking those who are then deemed as treated to be safe to work with such.

Is there not an issue of deliberate ambiguity in allowing 'false belief clinics' and 'rehab clinics' to hide under terms that would infer they are either specialists in a certain condition or medically knowledgeable of them by calling themselves just a ME/CFS clinic ?

And then of course there is the issue of how they are getting away with just having 'fatigue' (when ME/CFS isn't 'fatigue') or 'pain' or 'persistent symptoms'
and of course the liability that might be made different by that - does someone running only one of these get to say it doesn't matter if their 'treatment' makes the underlying condition worse because that isn't their job/lookout/responsibility... just 'fatigue' ?