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

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.

 

not directly connected but possibly of interest. Robert Sutton put in an FOI to NHS England in April 2023.
https://www.whatdotheyknow.com/request/myalgic_encephalomyelitischronic#incoming-2286273

 

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......

 

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.

 

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.

 

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?

 

Sorry I will write some thing up to explain later.

 

lol i know its not funny really but that really made me laugh, its like a Monty Python sketch

 

I think @Kitty shou1d keep quiet about this idea or e1se it wi11 be imp1emented across the who1e of the NHS for a11 conditions....

 

lol


They will make yet another category of illness....

MUCPs...

Patients suffering from Medically Unexplained Care Plans

 

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?

 

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

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".

 

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.