The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

Amw66 said:
Is this shenanigans, together with the BACME guide a taster of the MEA when Charles retires fully ?
Click to expand...

I'm not sure they've even bothered to wait for Charles to take a back seat, they seem to be steamrollering ahead regardless. I wouldn't blame him if he decided he's had enough of trying to be the voice of reason and balance, or the one person who reads and responds to individuals' concerns on social media.

I don't know what the MEA think they're going to achieve for people by going down this track. Why aren't they arguing that apps are not only unproven (and staggeringly tiresome) management tools, they're a wholly unacceptable offer in the context of ME/CFS? That there's a list of basic healthcare services that are not made accessible or even offered at all, and why aren't real, serious issues like that being addressed instead of insulting people with phone apps?
 
I feel like they have given up. The only way they have a “seat at the table” is by getting involved with this low grade junk. It’s like they just got tired of there being no progress so they’ve gone “well, this will do, at least it’s “something” kind of like PROMs in a way “well if we do this, we can measure our success and show we’re adding value” ok, but it’s junk. It’s not helpful, nobody wants it and it’s adding to our burden. Why do we have to always make other people feel better about themselves?
 
Email finally today to MEA RF

Sent today.
'Dear Russell,

I hope you had a good holiday break until 21st July.

As yet, you do not appear to have responded to my emails or actioned my reasonable requests?

Whilst I do not 'qualify', according to your criteria, as host of the Seminar, facilited only by Eleros, so they tell me, I have supplied the NHS email and contact link who was also booked by me to attend, but couldn't on tbe day to a clash with one by Sir James Macay.

I have been in touch with Paul O'Brien and Roman over release of recording of Seminar to the NHS email. I believe they have no problem with facilitating release. I am organising a meeting with them on their invitation soon.


In addition, I have asked Karren and Charles, who say they could not access the recording, suggesting only you can.

I have checked with Deputy CEO of SNEE ICB at the ICB Meeting in Public on 15th July. I will release that question in public recording as it is intended to be openly in the public domain.

Deputy CEO Richard has no problem either with release of the recording - which you flag as being in collaboration with SNEEICB and the Seminar posting you advertised carried their logo.

So please can you send the recording forthwith? Please also send it to Richard Watson.

The seminar showcases the work and development of our coproduced service work.

Frankly Russell, the withholding of this showcase from the person who delivered the approved business case to the ICB Clinical Executive, is both disrespectful and reputationally, potentially damaging.

If there are any further issues requiring clarification, please ring me.

I really am quite unwell at the moment, and this situation has caused me further stress and work.

We are days away from our new service commencement on the 1st August as you will be aware.

I have devoted, as a carer and member of the Voluntary Sector, 30 years to secure a service.

I have had the most engaging helpful and respectful relationship with the ME for most of that time apart from around the 2002 hiatus and Val Hockley stewardship.

So please begin to build bridges and restore that faith and trust, which is fast disappearing with the release of the crass NHS Delivery Plan, before it is too late.'


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