Sasha
Senior Member (Voting Rights)
That's not a good sign.
They're a conduit to them, though, presumably, if anyone wants to get in touch.
UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care
- Thread starter OrganicChilli
- Start date
Thanks. It sounds better but still too vague. Afaics, the UK "delivery plan" proposed support services for the mild to moderate, very severe m.e cyphoned off as an acute-need category … unsure, as so little info is shared, whether that's purely around nutrition & hospital care or covers ongoing medical & supportive care at home … & wider severe m.e - the rest of the 25% severe - isn't covered / catered for at all. Adressing these areas individually and what they want for each group would help.
The last bit "More than a million people in England are estimated to live with ME. This legal action seeks to clarify the responsibilities of health authorities and ensure that people with ME receive consistent, evidence-based care across the NHS. " I don't necessarily agree with those figures and framing. I do like the attempt to clarify responsibilities and drive consistent standards, yes!!! .. However "evidence based" in this field has often , bec of sheer refusal to do other research, just meant CBT or "NICE" agreed evidence, the basics of pacing, which is same old, it doesn't even stretch to melatonin for sleep.
As someone very severe but not critical as I have a feeding tube in place, I want the same medical care & therapy support that other neurological conditions in my area get (- I have a strong neurological presentation - dysphagia, hypertonia contractures & suspected dystonia , cognitive impairment & severe sensory sensitivity - ) but currently get nothing at all (except occasional dietician) and want access to off-level, compassion-led, drugs as appropriate. eg I didn't tolerate Abilify but with such strong anecdotal reports, I believe in the right of the long-term severe to try it. Dr Bansal prescribed mine but he has now retired.
Binkie4
Senior Member (Voting Rights)
Yes. I was suggesting that a letter could be sent to the campaign #JusticeforME c/o their lawyers if this is possible, not any communication with the lawyers, if anyone wanted to do this.
I haven’t seen them on X I don’t think.
I did some AI chat - see screenshots - about the DHSC delivery plan as is and legal challenge, it seems to be suggesting that the omission of severe ME care is due to the lack of additional funds committed by the plan, which limits its potential. I asked whether it was legal to carry on ignoring severe ME, and it said it's possible to challenge it under the Equality Act, but this justice movement seems to be a broader challenge?
Our charities aren’t going to do anything, so it will need to be patient-led, but I'm tired of anonymous patient rep! it doesn't reassure when we can have wildly different experiences, views and priorities& they're asking for money!
However, if they do get something through to challenge the gvt / NHS & its film flam, I would be very grateful for their work.
I did some AI chat - see screenshots - about the DHSC delivery plan as is and legal challenge, it seems to be suggesting that the omission of severe ME care is due to the lack of additional funds committed by the plan, which limits its potential. I asked whether it was legal to carry on ignoring severe ME, and it said it's possible to challenge it under the Equality Act, but this justice movement seems to be a broader challenge?
Our charities aren’t going to do anything, so it will need to be patient-led, but I'm tired of anonymous patient rep! it doesn't reassure when we can have wildly different experiences, views and priorities& they're asking for money!
However, if they do get something through to challenge the gvt / NHS & its film flam, I would be very grateful for their work.
Attachments
V.R.T.
Senior Member (Voting Rights)
I just feel quite worried because this may be a big opportunity to change things. If they are actually successful with this legal challenge and ask for 'specialist care' without being more specific then BACME will just fuck us all over again, and now none of us can complain because 'it's what we wanted and we went to court for these services'. It will be more grist for the 'pwME are never happy and paranoid and always complaining' mill.
I do not have the capacity to engage myself sadly but I strongly recommend that some of us get in touch through the lawyers and try to persuade them to get more specific about the type of services we need. Physician led, specialist nurses, home visits etc etc.
This could be a really good thing if we get it right. If we get it wrong it could fuck things up big time. It will be harder to ask for the right kind of services and research hubs when there's academic interest if we already have a shiny new gazillion pound BACME gaslighting machine in place.
I do not have the capacity to engage myself sadly but I strongly recommend that some of us get in touch through the lawyers and try to persuade them to get more specific about the type of services we need. Physician led, specialist nurses, home visits etc etc.
This could be a really good thing if we get it right. If we get it wrong it could fuck things up big time. It will be harder to ask for the right kind of services and research hubs when there's academic interest if we already have a shiny new gazillion pound BACME gaslighting machine in place.
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Sasha
Senior Member (Voting Rights)
@Jonathan Edwards, did you have any luck in making contact?
I'd also like to see our charities stepping up.
Jonathan Edwards
Senior Member (Voting Rights)
No.
Sasha
Senior Member (Voting Rights)
Thanks very much indeed for trying. That's quite worrying, though, that you had no response.
Unless they've got social media, it seems the only possibility of direct contact is to donate and use the comments facility on the donation page - with no guarantee that they would read it, and of course, the comment would be public, which would risk undermining the fundraising.
Binkie4
Senior Member (Voting Rights)
Thank you for your efforts.
Valerie Eliot Smith
Established Member (Voting Rights)
That is an excellent idea.
Unfortunately I can't do it (see my post #48 earlier) but it's a very sensible suggestion.
Valerie Eliot Smith
Established Member (Voting Rights)
[Edited for clarity]
The deadline for launching judicial review (JR) proceedings was Tuesday 21 October, 9 days ago (although that can be extended in certain circumstances).
The CrowdJustice funding page has no update on any DHSC response to the letter before claim. However, the #JusticeforME campaign is still collecting pledged donations. If JR proceedings have been commenced, then it's likely that there would have been an updated appeal as much higher levels of funding would be required - but there has been nothing.
The lawyers in this case, Rook Irwin Sweeney, have confirmed on BlueSky that Sarah Boothby is the contact point for the campaign. Perhaps someone from here could contact her directly for an update. Donations are still being made in good faith but it's not clear how the money will be used. The initial target of £15,000 (now surpassed) would cover costs incurred so far but no more than that. The current total is at £16,670.
Given my previous dealings with the campaign (see earlier in this thread) it would not be appropriate for me to pursue this. I know that I will not get any clear answers to my questions but someone else may have more luck.
Note: Sarah is the campaign coordinator. She is also a member of the DHSC Task and Finish Group (now renamed the "PostPublication Stakeholder Engagement Group") for the ME/CFS Final Delivery Plan (FDP). The civil servants responsible for implementing the FDP have had to use valuable resources in responding to the letter before claim from the campaign's lawyers, thereby slowing down their work on the FDP.
So the coordinator of the #JusticeforME campaign is simultaneously apparently committed to implementing the FDP whilst at the same time challenging aspects of it and hindering progress on its delivery. Members of the PPSE Group also receive sensitive information which could be of use in the challenge. This is a clear conflict of interest.
Incidentally, I'm no fan of the FDP but I am a fan of transparency and integrity - especially when people are being asked for money.
The deadline for launching judicial review (JR) proceedings was Tuesday 21 October, 9 days ago (although that can be extended in certain circumstances).
The CrowdJustice funding page has no update on any DHSC response to the letter before claim. However, the #JusticeforME campaign is still collecting pledged donations. If JR proceedings have been commenced, then it's likely that there would have been an updated appeal as much higher levels of funding would be required - but there has been nothing.
The lawyers in this case, Rook Irwin Sweeney, have confirmed on BlueSky that Sarah Boothby is the contact point for the campaign. Perhaps someone from here could contact her directly for an update. Donations are still being made in good faith but it's not clear how the money will be used. The initial target of £15,000 (now surpassed) would cover costs incurred so far but no more than that. The current total is at £16,670.
Given my previous dealings with the campaign (see earlier in this thread) it would not be appropriate for me to pursue this. I know that I will not get any clear answers to my questions but someone else may have more luck.
Note: Sarah is the campaign coordinator. She is also a member of the DHSC Task and Finish Group (now renamed the "PostPublication Stakeholder Engagement Group") for the ME/CFS Final Delivery Plan (FDP). The civil servants responsible for implementing the FDP have had to use valuable resources in responding to the letter before claim from the campaign's lawyers, thereby slowing down their work on the FDP.
So the coordinator of the #JusticeforME campaign is simultaneously apparently committed to implementing the FDP whilst at the same time challenging aspects of it and hindering progress on its delivery. Members of the PPSE Group also receive sensitive information which could be of use in the challenge. This is a clear conflict of interest.
Incidentally, I'm no fan of the FDP but I am a fan of transparency and integrity - especially when people are being asked for money.
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bicentennial
Senior Member (Voting Rights)
For which reasons might it become necessary to delay delivery of the Guideline implementation?
If I may assume this is what the ME Plan delivers. Eg to make sure its sufficient, contains no risk, consists and is not misleading?
Does it actually need revising at this stage?
Is there transparency enough for me to know what is in the pipeline? Why can't it all be transparent? Whats so scary?
Was that audit of the local and national ME / CFS service expenditure ever disclosed, yet?
Since it was so crucial to inform this cagey plan - it was called a stocktake at the time, and included audit of the LC clinics.
Why can't I know precisely what the campaign wants revised? I agree with the plaintiff anonymity on personal case details, but do they say which bits of the plan they want altered?
But maybe I didn’t read all of everything to know these things. However there is still too much fear on all sides. The fear is not fear of the illness. Its fear of people and fear of words...
If I may assume this is what the ME Plan delivers. Eg to make sure its sufficient, contains no risk, consists and is not misleading?
Does it actually need revising at this stage?
Is there transparency enough for me to know what is in the pipeline? Why can't it all be transparent? Whats so scary?
Was that audit of the local and national ME / CFS service expenditure ever disclosed, yet?
Since it was so crucial to inform this cagey plan - it was called a stocktake at the time, and included audit of the LC clinics.
Why can't I know precisely what the campaign wants revised? I agree with the plaintiff anonymity on personal case details, but do they say which bits of the plan they want altered?
But maybe I didn’t read all of everything to know these things. However there is still too much fear on all sides. The fear is not fear of the illness. Its fear of people and fear of words...
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Valerie Eliot Smith
Established Member (Voting Rights)
Sasha
Senior Member (Voting Rights)
I don't really understand where we're at, and what the next steps would be.
V.R.T.
Senior Member (Voting Rights)
Ok so if they have successfully got the government to deliver services for severe and vs pwME, and as we fear they have asked for the wrong things, does this preclude a similar legal campaign from asking for the right things? Or make the chances of success more likely by setting a precident?
Valerie Eliot Smith
Established Member (Voting Rights)
None of the above - and a "similar legal campaign" would now be out of time.
Reminder (I'm a lawyer): when I first read the ME/CFS Final Delivery Plan, my view was that it was not worth challenging it via a legal route (ie. judicial review).
If I'd been involved in the #JusticeforME campaign from the start, and not just briefly well after its inception, I would have advised against this course of action anyway.
ETA: I have written at length over the years about legal issues and ME on my blog eg. here
Peter T
Senior Member (Voting Rights)
My concern is that the Government doing anything in terms of service provision in the short term would just do more of the same. Until current service providers admit their current practice does little good and potentially harms, and until we have decent research funding I suspect any increase in service provision would be counter productive.
Further I worry increased spending now is likely to reduce rather than increase any chance of future funding when we have agreement on how best to provide more appropriate services.
Perhaps for me the biggest disappointment in the last round of spending on service provision was it created specialist services that have failed to add to the cumulative understanding of our condition and have if anything blocked progress in treatment especially for the severe and very severe.
[edited to add final paragraph]
Further I worry increased spending now is likely to reduce rather than increase any chance of future funding when we have agreement on how best to provide more appropriate services.
Perhaps for me the biggest disappointment in the last round of spending on service provision was it created specialist services that have failed to add to the cumulative understanding of our condition and have if anything blocked progress in treatment especially for the severe and very severe.
[edited to add final paragraph]
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V.R.T.
Senior Member (Voting Rights)
In your view is there any form of legal challenge that could potentially be successfully in forcing the government to deliver appropriate services (physician led with specialist nurses and home visits rather than 'multidisciplinary' clinics staffed by OTs and physios) for pwME?