United Kingdom: ME Association news

Thank you for these observations.

As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal procurement processes.

Our ICB and ICP management, adopted a partisan and biased discriminatory approach at the 7th hour - AFTER the procurement business case, was approved by Clinical Exec.And when a very thorough, experienced, professional lead manager was 'indisposed'!

Most senior management then 'offended' by breaching governance we say, ceasing the 2022 Terms of Reference, Autumn 2024, disbanded long term official reps of 'Lived Experience'....Ignoring survey of early TOR.

And started 'afresh' a new survey out with tbe old and in with the new - and with generic 'hand picked' Focus Group not governed by TOR!!!! And who were completely in the dark about the evolution of service development and delivery.

And favoured MEA over all other charity VS representation! Especially the HASC Team .....(VIP MEA CS was not party to any of this)

None of new shiny focus group had been given sight of Draft Spec which had been Approved early 2024.

But MEA were given it....summer 2024....

(the version given being different to that Approved in early 2024). "And MEA appear to have disseminated it elsewhere....but which version?
We have draft Version control record!

Elsewhere. ? Kent and Medway...?

As procurement hit, Jan 2025, 2 original TOR reps were thrown out, permanently excluded from SU Engagement by anon ICB/ICP letter Feb 2025.....

And meanwhile. MEA cosied up to BACME, Eleros et al - hence the 'showcase' presentation SNEEICB replacement manager bod, on 2nd July 2025......

Credit for Spec Pathway and good Lived Experience record, history and evolution, all rewritten to build the egos of the 2025 extant ICB, undeserving staff and charity involved... .

I and others are livid!
 
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Thank you @Nightsong and @Suffolkres. Your information is seriously worrying. What on earth are the MEA doing. I despair. I haven't dared to ask what's happening in my local area (Dorset). Last I heard they were full on BACME with added quackery.

I note that the MEA AGM is coming up shortly. I'm no longer a member. I hope those who are have lodged serious objections. If I had any energy to spare I would rejoin, but I don't.
 
Thank you for these observations.

As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal procurement processes.

Our ICB and ICP management, adopted a partisan and biased discriminatory approach at the 7th hour - AFTER the procurement business case, was approved by Clinical Exec.And when a very thorough, experienced, professional lead manager was 'indisposed'!

Most senior management then 'offended' by breaching governance we say, ceasing the 2022 Terms of Reference, Autumn 2024, disbanded long term official reps of 'Lived Experience'....Ignoring survey of early TOR.

And started 'afresh' a new survey out with tbe old and in with the new - and with generic 'hand picked' Focus Group not governed by TOR!!!! And who were completely in the dark about the evolution of service development and delivery.

And favoured MEA over all other charity VS representation! Especially the HASC Team .....(VIP MEA CS was not party to any of this)

None of new shiny focus group had been given sight of Draft Spec which had been Approved early 2024.

But MEA were given it....summer 2024....

(the version given being different to that Approved in early 2024). "And MEA appear to have disseminated it elsewhere....but which version?
We have draft Version control record!

Elsewhere. ? Kent and Medway...?

As procurement hit, Jan 2025, 2 original TOR reps were thrown out, permanently excluded from SU Engagement by anon ICB/ICP letter Feb 2025.....

And meanwhile. MEA cosied up to BACME, Eleros et al - hence the 'showcase' presentation SNEEICB replacement manager bod, on 2nd July 2025......

Credit for Spec Pathway and good Lived Experience record, history and evolution, all rewritten to build the egos of the 2025 extant ICB, undeserving staff and charity involved... .

I and others are livid!
Well that explains why I have been offered nothing except an online fatigue group course so far. Had to postpone my follow up the other day but it wasn't looking so positive for Suffolk ME services from the first meeting.
 
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