They really do think the general public are all idiots and snowflakes, don't they.
Uh-oh.
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King's College IMPARTS
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Esther12
Senior Member (Voting Rights)
I remember that King's Fund report on MUS from a few years ago that, as well as being predictably bad, was surprisingly sloppy in some places.
So much goes on behind the scenes that it's easy for people inside the system to work away at securing positions for themselves and their friends in ways that it's difficult for us to appreciate the importance of until it's too late.
Suffolkres
Senior Member (Voting Rights)
Thank you for your observations Esther12.
Yes, this has been part (I am apolitical here) of various Government's 'drive' (for nearly 20 years), to deal with long term conditions and disability public health/benefits burden and costs. ( Josephena's recent postings here about 'dark political underbelly of ME.' )
Joanne HUNT | Independent disabled researcher |** below
It's been bubbling away under the surface and under the radar for most people with ME, carers , charities/voluntary support groups. Thank you to Josephena for persisting and exposing it!
Early on before NICE & PACE, Norfolk & Suffolk, (Essex/Herts/Cambs/ Peterborough) Support Groups were unusual, by created a more formal 'coalition' of support groups/charities- East Anglia ME (EAME) across the Eastern region to understand the process and hold the process to account, which also included the 2007 NICE Judicial Review and NHS Health & Work conundrum which is, as yet, to be addressed.
It would appear we do have a really thorough understanding of this 'behind the scenes stuff' which we have tried (unsuccessfully to date) to properly address and to hold to account.
It was our challenges over 2 decades, to both process and involvement, with Coproduction work, (both National & Local Commissioning and service development) which led to our recent involvement with the Savid Javid initiative.
My impression from recently reported events like others here (and news on S4ME re Wessley NHS England etc) is that the dye is set, and there is little that can be done about the situation nationally by NICE, the APPG etc or by anyone else or us in particular the Department of Health Communities Team.
The question is, in the current climate, do we take this all lying down or do we make a fuss?
How many other groups/coalitions across the country are on this same journey?
I know Worcester are trying and of course Northern Ireland and the Isle of Man's recent work.
I have asked here on S4ME but have not had any feedback
if this misguided steer and ignorance of the facts and NICE by our Suffolk & NE Essex ICB is allowed to go unchallenged, we might as well throw in the towel.......
Locally, we will make a fuss about BPS stuff, mus, FND IAPT Social Prescribing etc.....conflating on ME needs and are in the process of doing so.
We wish discrete resolution not a public spat which is why I have been evasive to date about the situation.
The danger is, the longer offending stuff is 'in the public domain', the more it will become accepted wisdom. Mud sticks!
We first need to get our ducks in a row, issue an FOI to our Public Health bods etc and issue a formal complaint to the Integrated Care Board (ICB) for Suffolk & N E Essex, if our appeals for discussion and redrafting are ignored by the senior ICB members.
We have support from our nearest sympathetic Coproducers within the NHS.
Firstly we will engage with MEA who have been invited to be part of our Pathway work; as this offending paper adversely impacts our work so (report to Dept of H&SC etc), let APPG and House of Lords know as well', after we have had a proper academic appraisal of the offending work which has already been published....... we don't wish to draw attention to it more than necessary.
We will also secure the help of Joint Health Scrutiny & Overview locally, as they provide regular news updates on ME matters and have been involved since 2008!
That gives us access to a proper challenge and request for redress via an Independent Reconfiguration Panel. (https://www.england.nhs.uk/wp-conte...ring-service-change-for-patients_may-2022.pdf)
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"https://www.researchgate.net/profile/Joanne-Hunt/research
These papers were published some time before Marks submitted his paper. I decided to start submitting pieces on this subject a few years ago because for many years I saw a gap in the research – for whatever reason people were not writing on the dark political underbelly of ME. I had a lot of resistance from reviewers, even hostile and intimidatory reviewer comments (maybe that’s why people were not publishing?), but that made me more determined to get something published. To say it's been a struggle would be an understatement, being severely disabled, no funding and not having the credibility markers to be taken seriously......"
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I think if you want feedback from UK local groups it's probably better to go via the MEA, AfME or MEAction, depending which is active in that local area. Don't forget S4ME is an international forum and we can't undertake local actions within the UK as a forum, though of course some of our members are active both locally and nationally.
My own situation in Dorset is that I gave up on the local service and support group years ago. I simply don't have the capacity to fight single handed the entrenched support of quackery. I haven't even attempted to follow current local developments at any level and my GP is clueless. Maybe things have got better, I have no idea as I don't have the capacity to do anything locally.
I'm hugely grateful to people like you for persevering with this in your local area and nationally.
Suffolkres
Senior Member (Voting Rights)
Thanks Trish.
I appreciate your supportive comments.
Many of the people I have worked along side for 20 years and with, are in a similar position to you,either too worn down barely able to keep their head above water.
Very sadly, many have passed. RIP Dan Ward ME Support Norfolk, Brian Hindle Beccles Group; Derek Pheby who I emailed late September ironically on this, Ian Gibson MP who I met prior to his Parliamentary Inquiry and so may more good honest and committed people.
I have had my own personal difficulties crosses to bear this past 2 years but have struggled on to get a consultant led biomedical service like the one Dr Luis Nacul set up here reinstated.
It isn't a big ask nor rocket science either.
So, in answer to my own question to whether it's worth the fight, I will plod on a little longer... as my inflated sense of injustice overrides common sense and probity at times,... or so my family say!
We have had some fantastic service and support from local officers so that keeps me going too.
There are some good people out there after all in public service.
So let 2023 test the process and we will see it Suffolk can successfully push this over the line and live to tell the tale!
FYI the process.....
Meanwhile my newly arrived stray wants attention!
