UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

V.R.T. said:
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?
Click to expand...
The short answer is no. The legal route is not the right way of addressing the problems with the Final Delivery Plan. The Plan is so flabby (it looks largely AI-generated to me) that it's just not worth wasting resources on challenging it. It is simply one in a line of many such documents over the decades which sound good in theory but will deliver nothing, no matter how much it is tweaked.

Legal action is suitable for specific types of cases eg. medical negligence and certain areas of public and administrative law (which includes judicial review where appropriate to the circumstances). However, I formed the view from many years of research and advocacy that, whilst legal action can be useful, it is generally not the most important tool in the box. We have yet to change the entire culture around ME; for that to be achieved, a much broader approach is needed.

That said, part of that approach should include the main charities having a law firm on a joint retainer so that the lawyers can become familiar with the issues facing the ME community. That way, when a crisis occurs (eg. the NICE guideline fiasco of 2021) they can be consulted immediately for advice which does not come from a standing start. I've suggested it but, as far as I know, it hasn't happened.

I've discussed the longer answers to your question over the ten years of writing my blog, also in discussions around advocacy and in private conversations in response to specific inquiries from individuals and groups.
 
Valerie Eliot Smith said:
That said, part of that approach should include the main charities having a law firm on a joint retainer so that the lawyers can become familiar with the issues facing the ME community. That way, when a crisis occurs (eg. the NICE guideline fiasco of 2021) they can be consulted immediately for advice which does not come from a standing start.
Click to expand...
This sounds eminently sensible. Perhaps it is something we should push for now?
 
Valerie Eliot Smith said:
part of that approach should include the main charities having a law firm on a joint retainer so that the lawyers can become familiar with the issues facing the ME community
Click to expand...
AfME had/have their AGM at "the offices of Allen and Overy LLP" (https://www.s4me.info/threads/action-for-m-e-s-agm-and-conference-2018.6076/post-112395), one of the trustees had links with them.
I have no idea if they have used them for anything other than their offices. Possibly a wasted opportunity(?)
 
Sly Saint said:
AfME had/have their AGM at "the offices of Allen and Overy LLP" (https://www.s4me.info/threads/action-for-m-e-s-agm-and-conference-2018.6076/post-112395), one of the trustees had links with them.
I have no idea if they have used them for anything other than their offices. Possibly a wasted opportunity(?)
Click to expand...
Could be but it sounds more like just the use of a room as a donated benefit via the trustee's connection.

Allen & Overy (or A&O Shearman since 2024) wouldn't be the obvious choice for what I'm suggesting anyway. It's a corporate/financial behemoth (I had a friend who was a senior lawyer there) but they're not specialists in the kind of law which would be the right fit for advising the ME community.
 
Updated

Update on NHS care for ME now

Everyone who knows anything about ME knows pressure of time is not conducive to optimal health. Your support in enabling us to instruct lawyers to represent the interests of people living with the diagnosis (and nobody else) has been astonishing.

Under immense pressure of time, due to legal constraints, we were able to write our first Letter Before Claim. Not only that but, thanks to timely support from CrowdJustice, we are now in funds to continue arguing our case. Bottomless thanks to everyone who did everything they could to get us to where we are now.

We are delighted by the speed with which Government responded to our first letter. Although their reply was very wordy, not unlike the Final Delivery Plan for ME itself, it was the positive response we are aiming to get. Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME was recognised. Just to repeat: the need for an NHS specialist ME service was acknowledged.

Our concern now is to ensure the confidence underlying the government's first response to us is turned into provision that delivers without contradiction.

People living with ME, the clinicians working with them, and the unpaid carers worried sick about how long they can support anybody so severely disabled, deserve fully informed medical knowledge and understanding of the disease process. Knowing how the damage caused by ME impacts every aspect of everyday life is key to this. There can be no justification for dividing patients from each other - or for accusing families of causing symptoms - simply because the NHS does not know what PEM is or how to manage it.

NICE (the National Institute for Health and Care Excellence) has a role to play in correcting this. Hiding behind ignorance of how NHS Trusts normally operate is not acceptable.

We do not want to go to court to prove the state sponsored prejudice against people with this disabling illness, but with your ongoing support we can - and if we must, we will.

Support for people living with ME is international. It has deep roots. We are not short on knowledge. Thanks to every single one of you who has shared, promoted and donated. We could not be doing this without you, and thanks to you we continue to the next stage - under less pressure of time, thankfully!
Meanwhile, watch out for fresh endorsements on our main page.

If you would like to contribute your own, please send:
  • 50-200 words about yourself
  • a copyright free image
  • link(s) to any websites with which you are associated
We are not writing a book here, and we are narrowly focussed on health and care for ME, but we do want to demonstrate the breadth and depth of our roots. Email your copy to admin@justice4ME.uk.

Be prepared for delays - this is the reasonable adjustment everyone living with ME requires. We are working on this with everything we have, thanks to our lawyers, the CrowdJustice team (especially Chris this time round!) and, most of all, thanks to you.
 
Jonathan Edwards said:
Yes, but what does that mean. The government will happily nod to that - some nice special rehab, as in Yorkshire.
Click to expand...
Agreed. I’m actually now more worried after reading this

Things going through my mind of at least they could have added the caveat ‘that is required to report on its rate of mortality and increased disability ie harm after entering’ and at 1-2yrs.

Just so that at least if it is a horror of a place then it can’t hide the statistics of outcomes for once by not having to report on harms, redefining what that is to something no other ward uses , or claiming if they stick a mental health label on someone once there then a death or deterioration caused by inappropriate rehab treatment can then be claimed as not harm but ‘ah it was mental health something else’

Sad these basics need to be underlined but they do.

And that’s not even stopping harm happening just trying to ensure it has to at least be reported on as any cardiac ward would for its death rate etc

Given it’s currently about keeping people alive because what used to be claimed as a ‘miracle cure’ actually increased disability and made health worse so of course that MUST be a main safeguard that it’s being monitored given the likelihood of the same staff having the same beliefs has been demonstrated by the 4yrs of said staff just refusing to update but trying to hide that under a rebrand.
 
Jonathan Edwards said:
Yes, but what does that mean. The government will happily nod to that - some nice special rehab, as in Yorkshire.
Click to expand...
Oh, I think it means they will have to put funding to the delivery plan for a S/VS service. So that’s quite a good win.

I’m not sure we can rubbish it as a “doomed to failure” rehab unit at this early stage. Leeds has been closed a long while.
 
bobbler said:
And was specifically ‘referenced’ in the latest Miller et al newspaper article that included Garner as an author as a place that could have offered a cure etc
Click to expand...
Everyone references it, doesn’t mean you can get a bed there. Idont think they take inpatients at all? Also I don’t believe they treat S/VS, because there isn’t a single S/VS bed in the UK.

And the point of the J4ME update was the government seeming to acknowledge the need for an S/VS service. As I said, Pooh-poohing at this stage (or bringing Leeds into it) is a bit premature.
 
The Plaintiffs said:
Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME was recognised.

Just to repeat: the need for an NHS specialist ME service was acknowledged.
Click to expand...

With good reason, I say seamless must mean one specialising clinic for all stages (not referrals back and forth between staged clinics).

The actual format is not being specified, and specialist might not mean its only for more severe cases. I think any ME / CFS clinic is supposed to be specialising.

Or are we talking about out-patient clinics with in-patient wards and provision to advise the other inpatient wards. And how about inpatient wards to do the differential and co-morbid diagnoses?

MrMagoo said:
Oh, I think it means they will have to put funding to the delivery plan for a S/VS service. So that’s quite a good win.
Click to expand...

Oh good, then the funds CAN be diverted from the old model into the new model, that is the commended implement now planned.

Especially since the old model made it so obvious that it does not accept the radical reform, commended by NICE, and due to be implemented, after this period of grace to get used to it.
 
Last edited:
I want to know what each of the existing (sub-contracted and funded) ME / CFS clinics proposed to Government, at the audit stage ("stocktake"), on which audit this radical new delivery depended (hence we were told the delay). But it found the gaps

I want to know what each and every existing clinic proposed to contribute in the radically re-planned delivery. Surely these clinics must have contributed to the planning workshops.

Eg apart from ring-fencing people on tube-feeds and thereto dictating a new tube-feeding guideline to NHS Nutrition and Dietetics: how about the numbers of therapists to be replaced by dieticians, so anyone at risk of malnutrition has access?
 
Last edited:
How about the fringe service - optional, no longer a core service, all forms of CBT - how about it gives way to the core service in need of the subsidy. Soon, all the clinical psychologists will have their own M.E / CFS Guideline, so anyone with M.E who wants CBT can ask their GP for referral to Clinical Psychology

Every team needs a dietician, but no team needs its own psychologist. The latest Tyson report alleged that some ME / CFS clinics do not want to establish local referral routes for Nutrition and Dietetics, but should be encouraged to, as the others do.

Hang on, its supposed to be the Commissioners not the sub-sub-contractors who have the say in this.

I do not rely on encouraging these refuse-niks. But its a brilliant idea, to establish local referral routes .... to Clinical Psychology.

There is not enough money to pay for so many therapists as well as the doctors and nurses and dieticians, and new clinics where there are none, so everyone has access, and thereto also make sure no new clinic can exclude everything and everyone to do with severe cases.

Tut tut tut. Grrrrrrrrrr. Aaaaarrrgghh. Tut tut tut. Eeeek. Oi. Oi oi oi.
 
I think they need to clarify who they are, which charities or organisations they have consulted and what exactly they are asking for.

I am very uncomfortable with a shadowy group of unidentified people taking money for a legal campaign without the clear backing of and consultation with the main charities and anyone else interested. I'd love them to come to the forum to discuss their proposals with us.

I don't doubt the good intentions, but I am worried about what exactly they are proposing.
 
You must log in or register to reply here.
Back
Top Bottom