UK Government Delivery Plan for ME/CFS, published 22nd July 2025

Mod - apologies. Think this needs its own thread
From mods: a thread has been created here and this post copied: United Kingdom: Neighbourhood Health Centres


The delivery plan made reference to neighbourhood services. Below is the press release describing these services. It's worth reading the whole press release. How unfortunate that we didn't know about this so we could input ideas before the delivery plan for ME was finalised. It makes a mockery of the whole plan but - did you know- "the government has hit the ground running." Now we know why we didn't have a plan.

(bolding mine)
Press release (9/7/25)

Government takes action to deliver neighbourhood health services​

The government hits the ground running on delivering the 10 Year Health Plan by taking the first steps in the rollout of new neighbourhood services.
From:Department of Health and Social Care, NHS England and The Rt Hon Wes Streeting MPPublished9 July 2025

s300_carer-and-woman-with-walking-stick-on-patio-steps.jpg

  • Ground-breaking neighbourhood health services to be delivered in most-deprived areas first, where healthy life expectancy is lowest
  • Government hits ground running on delivering 10 Year Health Plan, beginning in deprived communities with greatest need
  • Pioneering neighbourhood health teams will focus on patients with multiple long-term conditions and more complex issues
People living in the most deprived communities across the country are set to benefit from new neighbourhood health services as the government takes the first steps in the roll-out today (9 July 2025), making care more convenient and reducing health inequalities.

Central to the 10 Year Health Plan, the services will bring NHS care closer to home and provide better support for people with complex conditions, keeping them well and avoiding unnecessary hospital trips.

One example is Team Up Derbyshire, an initiative which links up GPs, social workers, home carers and nurses to support people who need care in their own homes - bringing the best of the NHS to the rest of the NHS.

The government has hit the ground running on delivering the plan, today writing to health chiefs and local authority chief executives, urging them to team up with local health and care providers, voluntary groups and members of their communities to accelerate the rollout of the services across the country.

They have been asked to submit applications, outlining examples of joined-up working and innovation in their areas, to join phase 1 of the neighbourhood health programme.

This will prepare local partnerships to take on responsibility for more neighbourhood services in their area. It will see successful applicants join an intensive national coaching programme over the summer, including major workshop days that bring together experts, GPs and their teams, patients, the voluntary sector and local authorities.

Health and Social Care Secretary, Wes Streeting, said:

Our 10 Year Health Plan committed to building a Neighbourhood Health Service, and we’re hitting the ground running on delivering it.

If we are to get patients cared for faster, on their doorstep and even in their own home, then we need to shift the focus of the NHS from hospitals to the community.

Today, we are issuing an open invitation to local authorities and health services to become pioneer neighbourhood health services and lead the charge of healthcare reform.

As part of our Plan for Change, we’re beginning the Neighbourhood Health Service in areas of greatest need first, to tackle the unfair health inequalities that blight our country.
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From September, the first 42 sites will then immediately start rolling out their neighbourhood health programmes, with clear guidance, support and metrics to report on regularly.

The department and NHS England will work with over 40 places across the country and ensure each region is covered by the programme. The services will be prioritised in working-class areas where healthy life expectancy is lowest, targeting communities with the greatest need first.

After years of neglect, areas where people need the NHS most often have the fewest GPs, the worst performing services and the longest waits. People in working-class areas and coastal towns spend more of their lives in ill health, and life expectancy among women with the lowest incomes has fallen in recent years, after decades of progress.

Neighbourhood health services will bring together teams of professionals to focus on patients with multiple long-term conditions and people with complex needs.

A joint taskforce has been set up between the Department of Health and Social Care and NHS England to drive progress, chaired by Sir John Oldham and made up of NHS leaders, local authority bosses, and other key figures from the voluntary sector and health and care organisations.

In addition to the neighbourhood health services that will begin in September, the government is also working to deliver neighbourhood health centres across the country over the course of the government’s 10 Year Health Plan to rebuild the NHS.

Pioneering teams - some based entirely under one roof - will be set up in local communities to dramatically improve access to the health service, and will include staff like nurses, doctors, social care workers, pharmacists, health visitors, palliative care staff and paramedics. Community health workers and volunteers will also play a pivotal role in these teams.

Millions of patients will be treated and cared for by teams of health professionals, and in years to come, local neighbourhood health centres will relieve pressure on overstretched hospitals and provide cutting-edge, personalised care.

Eventually these health centres will be open 12 hours a day, 6 days a week within local communities, and will not only bring historically hospital-based services into the community - diagnostics, post-operative care and rehab - but will also offer services like debt advice, employment support and stop smoking or weight management, all of which will help tackle issues which we know affect people’s health.
 
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MeSci said:
It's really good, @Maat. There are a few small errors, but I'm not really up to going through in detail - hopefully soon others will.

I'm really sorry you're so ill.
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Thanks for that @MeSci, I really appreciate your effort. It's more the approach, tone and direction I'm asking about. I'm I'm gong to get my carer to read through the final covering letter and the detailed complaint for those type of errors such as 'wasn't instead of 'was', I spotted that one today. I can't tell you how many times I've read through.

Thanks, it's been a not unexpected major crash from the researching the first complaint last year, which was preparing the ground for this one.
 
I watched the first 5 minutes which is all I have the energy for this evening. I got the impression Oonagh was doing her best, possibly through brain fog, finding it hard to express herself clearly. She probably realises in hindsight a shorter really well prepared interview with reminder notes of the things she wanted to say may have been better.
 
It’s not the best delivery, but actually it’s nice to see someone really speaking their truth and not pussyfooting around. The frustration is clear, the “ok but what even is it” comes across. I don’t know if that was Oonagh’s intention, but it’s refreshing. She’s the first person talking about this to be authentic, and annoyed, and tired.
 
Transcript of the Interview between David Tuller and Oonagh Cousins

Binkie4 said:
David Tuller talks to Oonagh Cousins about the ME Delivery Plan
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David Tuller on You Tube Aug 5 said:
Intro to Interview

On July 22nd, the UK's Department of Health and Social Care released its long-awaited national delivery plan for ME/CFS.

The plan focused on proposed efforts in three areas: provision of health care services, research, and what it calls “living with ME.”

Overall, reaction from advocates for people with ME/CFS and others involved in the issue have been negative, often scathingly so.

The consensus is that it offers some pretty words about the seriousness of addressing ME/CFS but not much beyond that—including the kind of funding necessary to pursue the proposed strategies.

I spoke about the plan with Oonagh Cousins, a former world-class rower who developed Long COVID after a bout of COVID-19 early in the pandemic.

She is one of the three principals of #ThereForME, an awareness and advocacy effort.

The plan > > > > > #ThereForME's response to the plan
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Transcript taken from You Tube

but

- removing each person’s litter of ums and ahs, being normal in speech heh

– by now, digital audio puts a persistent reverb in my brain, more or less delayed, reducing overall capability, worse than disconcerting, nasty, and grinding if escalated, a progressive extension of the previous encephalopathy

- so I’d rather not review the audio version to get it exact, but please do feel free to adjust the transcript, clarify, comment on, confirm or correct these 2 speakers who did a grand job in their interview, worth accessing

- its full of good observation, all pertinent to the guide-line given by the questions, getting some things thought through.

- so please please do pick out any obs that struck you. Maybe highlight them here. Maybe develop the analysis as given with steps indicated.

- critiques are also manageable but maybe I’m not over-egging it. I was out of the loop so its the most observant news to me.

- just hard for me to follow by ear, and with so much packed in to explore in a short time. Out here in the posts we have all the time we still have to follow it further.

Transcript


*
DT

Hi, I'm here with Oonagh Cousins. She's with the campaign "There for M.E", and we're discussing the new UK, M.E, Delivery Plan.

Which has gotten pretty negative reviews across the board as being a lot of noise or words. And not much meat.

So, Oonnagh, why don't you tell us what your impressions were?


*
OC

Yes, I think you summarised it pretty well. Very very disappointing. Basically, not going to address the issues that we face. There were some more ...

DT
You expecting more?

OC
No, not really. I think we saw this coming. But it was still bleak, watching it play out, and seeing it published.

DT
So let's go over some of the components that you're unhappy with or that people are generally unhappy with. I think one is research. Not much funding or very little funding.

OC
Yes. So fundamentally the biggest thing I think most patients want is biomedical research into understanding the disease. And ultimately treatments. And yes, this doesn't provide that.

What they did provide was these £200k grants on repurposed medication. Which is positive. I think there are things that you could do with that. But again it doesn't really address …

DT
£200,000 pounds is nothing. Really.

OC
Yes, exactly. Yes, it's nothing.

And they talked about Heritage and Prime - these two other research projects. But those were developed independently of the Plan.

And again no biomedical research there. Thats health care services. Not looking at the overlap between Long Covid which....

All these things are positive but not enough. Basically. Not going to address the real root cause of the problem.

DT
So what besides the research? How about in the area of the treatment? It doesn't seem like they really make an effort to make sure that the NICE guidelines are implemented everywhere.

OC
Yes. So when it comes to the people, everyone in the ME community knows that health-care for people with ME is dreadful.

And one of the big obstacles we face is just this kind of opposition to the new NICE guidelines and they haven't addressed that.

There are these e-learning modules but who's accountable for making sure that they are being used. It's not clear.

And what you need is some national oversight.

It's very like they've … what's it called … delegated it to the locals. They're hoping for the best. The ICBs going to implement this.
Locally, these new Integrated Care Boards followed those new Integrated Care Services.

The Department of Health became the Department of Health and Social Care.

We lost sight of the National Institute for Clinical Excellence (N.I.C.E), when it was renamed the National Institute for Health and Care Excellence (N.I.C.E)

However N.I.C.E still sets the industry standard to guide subsidised clinics, and also rules which drugs are cost-effective enough to be subsidised. Making the national news for prohibiting costly drugs, otherwise they'd be largely unheard of

They do have a national and an international feedback system (contact detail will follow). They do practice some assiduous patient participation.

They are now concerned in the ICBs job which is implementing the M.E Guidelines, and the national M.E delivery plan, since the ICBs replaced the old CCGs (Clinical Commssioning Groups), handing out the local NHS contracts, commissioning the local clinics.

The local ICB is the local NHS commissioner, holds the purse-strings, adjusts to the local metrics, governs the local contracts.

But that's just not going to be enough. It's not going to address the issue.

We need national oversight and we need transparency around - are the M.E clinics being improved?

Do …. we need … there needs to be … accountability around it because otherwise you can just get away with not doing it, basically.

DT
So what do they …. what is it that they're calling for? I mean how do you see it?

OC
With the plan...

DT: Yes.

OC: I think they recognise the issue, and they know that the health care professionals and the medical profession needs to be retrained.

But they don't actually put in the actionable steps in order to do that. Basically, the e-learning module is not going to be sufficient, basically.

So they've acknowledged the issue which is a positive but they haven't … the steps aren't enough to …

DT
They basically said "this is an important issue and has to be addressed".

OC
Yes

DT
Okay.

OC
Exactly. Yes.

DT
I guess one could say that's something.

OC
Yes. It's something and it is that kind of formal recognition is a step, right?

Before there wasn't even acknowledgement that this was a problem.

And so from an advocacy perspective that is something you can use to hold the government to account.

I generally feel like the government hasn't been under much pressure to do much around this? And that's part of the reason you see this plan be so disappointing .. that they can get away with not putting money behind it.

The purse strings are tight in the UK right now. They will try to get away with not giving money. And if they think that they can get away with it without too much negative press, then they probably will do that.

DT
Mmm. So, what what else about the plan? Are there other aspects of the plan that you don't like? I know that there was … things ... Putting you on the spot here.

OC
Yes... What have we talked about?

We talked about the lack of research. Ah, we talked a bit about health care, and the lack of education. Insufficient measures to address the need to retrain the workforce.

But there's also the specialist service.

So again, they've talked about that and they know there's a need. But they haven't committed to anything.

And they've put that decision in the hands of Wes Streeting, who …
[ Secretary of State for Health and Social Care ].

So ultimately it's going to be a political decision rather than a medical decision.

DT
This speciality care.. for severe..?

OC
Yes, special service for very severe cases. Which is a positive step but .. ultimately they've deferred committing to anything on that, so... ... and they haven't …

There's no way to hold them to account for that. So again, yes, it's really disappointing.

DT
So, basically, they recognise - they acknowledge the need - that there are these severe cases and they acknowledge the need for care, but they don't actually do much to provide that care.

OC
Yes. Exactly. And again, you know, in the Foreword, Ashley Dalton talks about patient safety and the fact that people have died and that these should be - become - Never Events

DT
Ashley Dalton is the...?

OC
She's the Minister... I don't know her official title
[ Parliamentary Under-Secretary of State for Public Health !!! and Prevention !!! ]

but she's the Minister - one below Wes Streeting
[ Secretary of State for Health and Social Care ].

This is what she's responsible for. This side of things. So she's responsible for the plan, ultimately.

And yes, she talks about it at the beginning in the Foreword. They know that people with ME are dying because of the lack of care, right?

So they know that. They've talked about that. But they haven't put in measures that's actually going to change that, in that reality. Basically.

DT
So do you think that this plan has any immediate impact at all .. or .. what happens going forward and what happens with everybody who's worked on the plan and was putting time and effort into it?

OC
Yes, it's very disappointing in that regard. Because I know... there was a big consultation. A lot of people put a lot of hours in.

What happened? So, not totally clear to be honest.

But they have committed to keeping the Task and Finish Group going, and so there will be … it moved to the implementation phase ...

So that there is still opportunity to lobby and to work with the DHSC on this
Department of Health & Social Care
.
It's not like - now it's all over.

There will be opportunities to push for the things that they've committed to, and making sure that they do do those things. That will still be in the future.

But ultimately I think we really need a big shift in how much pressure they're under to do something about this.

Right now this is small fry for the Government? And they're just not giving it the attention or the resources it needs to make that shift.

I personally think it needs to come from a lot of negative publicity. Basically, that really shines a light on the failures, the systemic failures.

Right now it's not something that the Government are really feeling the pressure on.

DT
Do you think that the government has noticed the response to this plan. Or have they responded in any way. Or are they just kind of not really.... ?

OC
I haven't seen any response .. that I'm aware of. But I do think that it was noticeable, how negative the response has been .. and I think that is the start of the shift?

I think thats one silver lining, that we've seen, that kind of powerful negative response, with Channel 4 ... BBC Breakfast ... in the Times. Those are big outlets.

Radio ... BBC Radio 4 ... World at One. I think people were doing some brilliant interviews.

DT
including Sean O'Neill.

OC
Yes. Sean O'Neill. Yes...

Yes. Sarah Boothby ... Karen Hargrave ... Bonita ... Charles Sheperd. Yes.

Some really brilliant interviews. And I think that's a shift?

I think it was making the government look bad. Which I don't think that they've really felt before on the M.E side of things. So I think that that is a small positive to hold on to.

DT
How much do you attribute some of what's going on - even this minimal amount in this plan - to a lot of the attention around Maeve Boothby O'Neill's death, and the Inquest that seems to have pushed things forward to a certain extent.

Or at least created an awareness of the need for urgency, even if it hasn't created the urgency itself?

OC
Yes. It's difficult to say, but my instinct and my feeling is that that has been - is part of - the reason we've seen... ...

If there's anything positive coming out the plan, I do think part of the reason is because of that.

And that momentum shift, it has centered around Maeve's story being in the news.

I do think there's something in that. Yes.

DT
So what do you hope for going forward? I gather the community is quite disappointed. What happens with that disappointment? How do you suggest people … cope with that?

OC
Yes, it's difficult to say. The ME community has dealt with decades of disappointment. I do think it's incredibly disappointing. But it is a little bit of progress. And I do think progress is possible.

And I think we have … with the new N.I.C.E Guidelines … with some of this momentum around … the press is starting to pick up on this a bit … we're starting to build a new narrative around M.E. and I think that's really fundamental to making progress.

And I think we've just got to keep chipping away at that. And it's difficult to say exactly what will break the dam.

That's the thing with advocacy. It's not like ... you can say ... this will be it, but you don't … you just have to keep going … and then the tide turns. You know, you have to ...

It's like chipping away until suddenly the dam breaks?

And I think we've just got to hold on to that .. we are making progress.

And I think there's a bit of positive stuff in the plan.

There's a lot of negative media coverage.

The N.I.C.E Guidelines have changed.

There's a growing awareness that there are systemic failures. I think we can do it, but ....

DT
Yes, more has to be done.

What do you feel … I mean your case of M.E … when you were diagnosed … was from having had a Covid exposure, infection ... what degree do you think the Long Covid situation has pushed this forward as well ?

OC
Yes, I think it's really tricky because the thing is with the Long Covid stuff, we didn't really … People weren't really talking about the fact that a lot of Long Covid is M.E.

It's only really recently that we've been joining those dots? And so I think it's given it some credibility and legitimacy, amongst some scientists, and some doctors.

But in some ways I'm more frustrated than anything really, because I feel like it was a bit of a lost opportunity. It could have been from the start:

> look this virus is causing vast numbers of people with M.E. And it could have really > ... >

I think if those dots had been joined earlier, when people were still talking about the pandemic, and it was still in the news? And it wasn't this completely taboo topic:

> that narrative could have been stronger?

We could have joined those dots because ... people … there's a lot of stigma against Long Covid but it's not as bad as ... M.E. And I think Long Covid could have brought M.E along a bit?

But now we're at this phase where people just don't want to talk about the pandemic at all.

And so Long Covid's not really in the news at all any more.

So I think in some ways it's helped, but in other ways I feel like iit's a loss. A bit of a lost opportunity to be honest.

I think that the fate of both sets of patients, that are overlapping obviously … are completely entwined.

I don't think we can solve Long Covid without solving M.E. I don't think we can solve M.E without solving Long Covid.

When you present the doctors with M.E- or Long Covidy- type symptoms, at the moment most of them still think that maybe some Graded Exercise Therapy is going to help you.

So the unlearning of what the long-term consequences of an infection are … The doctors unlearning that, is going to be critical for both sets of patients.

So that both sets of patients need to work together. Even if you're someone with Long Covid who doesn't have M.E.

Yes, so, I have really mixed feelings and yes I think we could have done a lot more earlier, personally.

DT
... always hindsight. I wonder if there's some in the US because it does seem like there has been … there was... I had the sense earlier on that there was an understanding of the connection between the two.

But I think historians will have to go back and see what happened.

Did you want to say something else?

OC
No, I was just think… yes I think it's hard to pin down exactly what … some people .. making the connection … but .. the media wasn't making that connection.

I know when I was being interviewed in 2020, no one was talking about M.E with me, for example,. And I remember feeling … I remember being interviewed and they were asking me:

“ Are you surprised that there's no medical care ? “

And I didn't really know about M.E. But my friend had had glandular fever, and had been long-term sick, and we didn't call it M.E, but she has M.E.

So I was not surprised at all that there was no medical care for me. I remember sitting in front of interviewers and being like:
- don't you guys know that there's no medical care for long-term infections of viral .... ... long-term consequences of viral infections.

And I think if we joined those dots ... that we don't understand the long-term causes of infections … from the beginning, that narrative would be much more powerful.

And now, because the narrative is that Long Covid is over, it feels like people are like … it doesn't matter any more.

But actually the Long Covid is ..

It's shone this light on this blind spot in medicine.

And if we had told that story, then it's much more obvious why you need to fix Long Covid, because it's this wider problem. But we're now playing catch-up with that story.

And it's much harder to play catch-up with this story, now that everybody's desperate to move on. But if we'd made that point from the beginning, yes, that's what I'm trying to say:

- if we'd made that point from the beginning, I think our advocacy, and our ability to make progress for both of these conditions would have been easier.

DT
Okay

OC
Yes

DT
Okay. Thank you, I appreciate it.

OC
Thank you so much

DT
Okay.

,
1 edit to put "Transcript" at the top
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I think the key bit oonaagh was correct on was the DHSC delivery plan written as it was, due to feeling an absence of pressure. They did what they could get away with because there wasn’t a public or media onside the m.e cause, outside of the community that were not widely mobilised or vocal, expecting and demanding More. They knew from m.e history, collaboration is on their terms, organised public pushback against the grossly inadequate has been little. We are the odd, weak billy no mates, that takes s*** because it wants to be friends & doesn’t protest, that people can easily abuse. There’s a line-drawn in the sand from the long covid orgs in Scotland regarding failed delivery (possibly after seeing us repeatedly failed) that I welcome - a new era I hope.
Charities quit SNP Government's Long Covid network over 'broken promises' as £4.5m fund not spent

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