UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Utterly brilliant writing... in the vein if Private Eye!

 

Choice treats for Sunday digest!
'What we need is standardised pathways based in legislation & implemented institutionally.'

'Slow
In some cases, a tortoise & hare approach, where one favours the speed of the tortoise is justified. Yet, not in this case

'We know from our own experience & the patient community that patients needs are urgent. In essence we have a health emergency where it is the norm for medical neglect; where people need urgent medical & social care.
Slow, man the plan is slow. Now if the DHSC had PEM & ME itself it might be forgiven that they need a pacing approach to implement the changes needed. But they don’t. The Plan ‘considers how to increase knowledge of HCPs attitudes by Sept 2024’. Jesus, Mary Joseph & the wee baby donkey (thank you Cpt Hastings) this is mind numblingly slow.'

'We need a clear educational public health messaging campaign that this illness was seen as having psychological & social factors and this was wrong and a clear statement on how the illness should now be perceived – biological, devastating, needing urgent specialist care - and an apology.'


The above article needs to go to every single member of the ICS and Clinical Exec!!!!!

 

A real Pithy commentary!

 

I just came across this podcast which has a section discussing the consu1tation -

https://theweek.com/the-week-unwrapped/961999/the-week-unwrapped-a-new-human-me-and-date-stacking

(ME discussion starts at approx 15 minutes).

I'm not sure if it's been 1inked to e1sewhere on the forum, or if there's a better thread to post it, so mods p1ease move or edit if that's the case.

It's a frustrating 1isten because it shows how effective1y the BPS group in the UK are sti11 muddying the waters about CBT and GET being 'effective treatments for some patients' etc., and the idea that 'CFS is sti11 rea1 even if it's root cause is psycho1ogica1'.

 

Invest in ME (IIMER)

https://www.investinme.org/ukcrc-input05.shtml

 

In advance of the final report of the Infected Bloods Inquiry tomorrow, Monday 20 May, the NHS E-learning for patients/carer only, is up and running from 15 May 2024. Two further sections are to be added for healthcare professionals only access. This was part of the Interim Delivery Plan.

They have been able to produce this while still seemingly unable to publish the report on the results of the consultation. This was promised by the Minister of State for Health and Social Care on the 26 April 2024, or did I miss it in my absence? UK House of Lords/ House of Commons Questions


Here is the link Catalogue (learninghub.nhs.uk)


You can create an account as a patient (service user)


I’ll leave you to make your own minds up on it.

For context I add four links:

• A Report–Chronic Fatigue Syndrome: Guidelines for Research - M C Sharpe, 1991 (sagepub.com)

• Chronic Fatigue Syndrome - A. Chaudhuri, Wilhelmina M.H. Behan, P.O. Behan, 1998 (sagepub.com)

Chronic Fatigue Syndrome | Royal College of Physicians of Edinburgh (rcpe.ac.uk) for the full PDF​

• The 2007 NICE Guideline CG53 in force at the time when I was diagnosed with CFS and treated at a well known Rheumatology hospital outside London, with a 36 year ongoing treatment history of Psoriasis and family history of Eczema: THE-NICE-GUIDELINE-ON-MECFS-CG53-22-AUGUST-2007.pdf (meassociation.org.uk)

“1.2.1.4 Signs and symptoms that can be caused by other serious conditions ('red flags') should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated :


· localising/focal neurological signs

· signs and symptoms of inflammatory arthritis or connective tissue disease

· signs and symptoms of cardiorespiratory disease”


“1.2.2.6 The following tests should not be done routinely to aid diagnosis:


· the head-up tilt test

· auditory brainstem responses

· electrodermal conductivity.


1.2.2.7 Serological testing should not be carried out unless the history is indicative of an infection. Depending on the history, tests for the following infections may be appropriate:


· chronic bacterial infections, such as borreliosis

· chronic viral infections, such as HIV or hepatitis B or C

· acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)

· latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus.”​

• Healthcare | Free Full-Text | Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty (mdpi.com) 2019

As I depart for a while to try and recover from my current PEM, I leave you with a quote:


“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”

Oliver Wolf Sacks, CBE, FRCP, 1933 – 2015 Oliver Sacks - Wikipedia

 

1. 21 May 2024
   Added a summary of responses to the consultation.
   
   
2. 4 September 2023
   First published.

Is there something new in this?
HTML version
https://www.gov.uk/government/consu...delivery-plan#full-publication-update-history

East to read version
https://www.gov.uk/government/consu...cfs-easy-read#full-publication-update-history

 

Well spotted, they've added this text to the landing page.

So we're expecting two things:

1. Report summarising the actual responses received from the consultation period, and
2. the final delivery plan.

 

I've just realised (having looked up the trustees who are generally 'business' type experience like media, investment banking, law) that this is the list of advisors for the board of the Charlie Waller institute: Advisory Groups (charliewaller.org)

There seem to be a few of these big trust type things involved in funding departments and training eg University departments or centres in mental health.

I note that Lord Layard (economist: Richard Layard, Baron Layard - Wikipedia) and Professor David Clark (David M. Clark - Wikipedia ) were behind IAPT being set up

And a major component of this department at Reading is delivering training for IAPT. With also training for non-IAPT that seems based on similar stuff.

 

Has anyone already posted this speech from Baroness Findlay of Llandlaff in the debate on 7th Dec 2021?

Baroness Finlay of Llandaff - Health and Care Act 2022 contributions (parallelparliament.co.uk)

If you search on the term CFS then it takes to the section I've just read through. And there are a few interesting paragraphs. Talking about benchmarking by the CQC etc.

Apologies if this is off-context, bitty (I'm using limited brainpower) and if everyone already knows much of what is discussed. I know things have moved on somewhat with the implementation too.

It includes the para (which I hope hasn't been taken out of context, and if someone let's me know if it is OK to copy paste the whole part, might be better as some is 'general' and others CFS specific so it is hard not to misadvertently put things out of context):

then paragraphs on diabetes, Chrohns and issues such as biologics. with the final para:

there is then a question from LOrd Lansley to her:

And her response: