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

[Valerie Eliot Smith]

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?

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.

 

[V.R.T.]

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.

This sounds eminently sensible. Perhaps it is something we should push for now?

 

[Sly Saint]

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

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(?)

 

[Valerie Eliot Smith]

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(?)

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.