The long-awaited and much-government-touted ME Delivery Plan is shaping up to be, predictably, largely a whitewash. As ministers slowly drip out pieces of information about the upcoming publication, it’s becoming increasingly obvious the plan is set to offer little more than lukewarm gestures, rather than anything remotely resembling meaningful change for people living with myalgic encephalomyelitis (ME).
However, it’s a wonder that anyone in the ME community is even mildly shocked at this. Nothing has really changed about the abusive, gaslighting government and NHS patient culture for people living with the devastating disease. That’s painfully evident in the fact multiple patients with severe ME are still trapped in a vicious ouroboros of NHS physician arrogance and ignorance – one feeding the other in a harrowing hospital care catalogue of continued errors.
What’s more, the plan isn’t emerging into a vacuum. Increasing NHS privatisation and mass government-sanctioned job losses, Department for Work and Pensions (DWP) disability benefit cuts, need we go on? The writing is on the wall. And what that writing says is that the current Labour Party government can’t be trusted to come out to bat for the chronically ill, and often bed-bound or housebound millions missing.
So why exactly would anyone think that it’s about to turn this appalling situation on its head now?
The ME Delivery Plan: no new funding is NOT a shock
Let’s start with the elephant in the room: new funding for ME research.
We’ve known since at least February that the government has no new funding forthcoming for this. In particular, parliamentary under-secretary for the Department of Health and Social Care (DHSC) Ashley Dalton confirmed it. This was in a response to a written question.
An article in the Times presented this like it was a shock, reporting how:
Charities and MPs said they were “incredibly disappointed” and that without extra funding efforts to improve the lives of people with ME would fail and it would be hard to unlock new treatments.
The Times quoted one of the usual suspects, namely a long-controversial leading ME charity. This was Action for ME (AfME) chief executive Sonya Chowdhury. The non-profit has nothing if not a problematic past. It’s one of holding back, or even actively sabotaging progress for patients, wrapped up as it was in the junk PACE trial part-funded by the DWP. For all its rumblings that it has reformed to centre patients, it still rubs shoulders with prominent biopsychosocial (BPS) circles and proponents.
Behind the scenes, Chowdhury has literally been working with successive governments on the delivery plan. Specifically, she represents AfME on the ME/CFS Delivery Plan Task & Finish Group. It’s therefore hard, to nigh-on impossible really, to imagine Chowdhury would be unaware of the government’s intentions for funding.
Arranging the deck chairs on the Titanic crisis in ME care
Now, a new response from Dalton has only drove all this home further. Specifically, in another written question reply on 4 April, she said in one crucial part that:
We also intend to provide additional support to ME/CFS researchers to develop high quality funding applications and access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.
To put it simply: there’s no new funding. When the government talks of “boosting” it for ME research, as Dalton said earlier in her answer, all that really seems to mean in practice is giving researchers some advice on how to make grant applications. That might actually seem more than a little insulting to researchers as well. It’s basically implying the lack of quality research for ME revolves around their failures to secure funding. This is in lieu of the glaring lack of it available in the first place.
The Canary has also highlighted before how the funding focus has largely revolved around harmful psychologising treatments. So ring-fenced funding for causes and genuine curative treatments is essential. Not so to the upcoming ME Delivery Plan it seems. ME research will continue to compete with research for other better-recognised conditions. But don’t worry. Researchers will have DHSC top tips to pip other patient communities also desperately needing more research funding to the post.
It’s another case of the government trying to look like it’s doing something. In reality, all it’s doing is “rearranging the deck chairs on the Titanic”. This sinking ship of a spiralling crisis that is surging numbers of people living with ME and long Covid with no lifeboat curative treatments in sight.
Connect the dots: this government couldn’t care less about ME patients
Moreover, while we say we’ve known since February, in reality, this has been obvious for a good time longer. A government that can’t even commit to real-terms public funding increases for the NHS is hardly about to plough more funding into tackling one specific, and frankly, under-recognised disease.
Throw in the fact that Labour’s rhetoric around the DWP cuts has been leaning heavily into ableist ‘work-shy scrounger’ narratives and it’s really no major surprise.
The Canary has after all, also connected the dots between its attack on chronically ill and disabled people unable to work, and its plans to coerce them into its new workfare programmes. In fact, we revealed how the biopsychosocial lobby and model is deeply embedded in one key work programme – WorkWell – the DWP has been trumpeting.
The BPS model has long been a feature of the Labour right’s approach to disability benefits. Crucially, it was under Tony Blair’s New Labour government that a chief medical adviser for the DWP – Mansel Aylward – embedded this into the government’s approach to welfare. You can read more about this murky history here.
But the point is that Blairites’ neoliberal Starmerite successors are picking up this mantle and running with it. Far be it for a Labour government fixated on more austerity through public service cuts to put its money where its mouth is for ME patients. Instead, schemes like WorkWell and controversial Independent Placement and Support (IPS) are more on-brand.
That is, forcing ME patients into work will save it money overall, so that’s where Labour is more likely heading. It will publish the ME Delivery Plan in this context. In short: it was only too predictable that new funding was never going to happen.
New ME specialist services? Not likely with the ME Delivery Plan
To sum up then: work programmes cost less money than funding research, or ensuring a stable and sufficient social security safety net. It means more ME patients shunted into work – a boon in Labour’s mind for business, tax revenues, and the welfare purse. Though obviously, it’s all at the significant risk of severely worsening their health. Those unable just lose out on DWP disability entitlements regardless.
No matter – not Labour’s problem, because there’s no real treatments or services ME patients can access anyway. So, any concern it has that exacerbating ME patients’ health condition might overload an already stretched NHS and eat into its budget, is moot. It’s counting on ME patients not accessing services at all – because they won’t exist.
And it’s sure looking like Labour doesn’t intend to change the provision available now. From what we can glean ahead of the delivery plan itself, this very likely won’t set out more government support for specialised ME services either. Notably, Dalton responded to another question that Labour MP Chris Ward submitted. This concerned:
what assessment his Department has made of the potential impact on clinical support staff of referring patients with long covid to ME/Chronic Fatigue Syndrome specialist services.
Dalton replied that the government has made no such assessment, only that:
NHS England has published commissioning guidance for post-Covid services which sets out the principles of care for people with long COVID.
There is also specific advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners. Whilst NICE guidelines are not mandatory, the Government does expect clinicians and healthcare commissioners to take them fully into account.
On top of this, she highlighted that:
Commissioning, service provision and staffing for both myalgic encephalomyelitis services and long COVID services are the responsibility of local integrated care boards.
Reading between the lines then, it implies that through the delivery plan, the government won’t mandate the commissioning of new services. Nor, again, will it deign to fork up new funding allocations for it. But then, why would it? See again: all the above. This is another instance in which it was something already supremely obvious.
Not that we can trust Labour or the NHS anyway
All that said, it’s rather hard to trust that the government and NHS would bring forward genuinely decent services for ME patients anyway.
As anyone living with it will tell you, the ‘specialist clinics’ for ME that do exist are absolutely woeful. At best, they’re abysmally underequipped to help ME patients. Since there’s no current treatments or cures, it’s largely advice-based. The most these can usually do is suggest symptom management techniques like pacing.
At worst, these have been a hotbed of actively harmful so-called ‘treatments’ like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for years.
The National Institute for Health and Care Excellence (NICE) that Dalton referenced may have removed GET as a treatment recommendation, and downgraded CBT in its new 2021 guidelines, but that hasn’t stopped specialist services promoting them anyway. That is, even now, some of these services are offering slyly rebranded versions of this, such as Bristol ME service’s lead Peter Gladwell’s ‘pacing up’ approach. NICE guidelines are, after all, not mandatory.
Will the delivery plan do anything to hold healthcare providers accountable for this? Once again, it’s doubtful. And, there was nothing in the December 2024 interim delivery plan that suggested it would either.
Did we mention arch BPS promoter Simon Wessely is still on the NHS England board? The NHS commissioning new services without a BPS approach is looks a lot less likely while he has a steer.
Severe ME services seem even more unlikely with the ME Delivery Plan
Moreover, while it would be nice to think the plan will commit to commissioning specialist NHS services for severe ME patients, similar problems abound.
As the Canary’s Steve Topple previously underscored:
This narrative around the Royal Devon and Exeter Hospital having a protocol for severe ME in an inpatient setting is admirable.
But let’s be realistic: all any of this will do is possibly – not definitely – stop severe/very severe ME patients from starving to death.
If the interim delivery plan is anything to go by again, there won’t be a lot on this in the forthcoming publication either. All we got was another “work with stakeholders to consider” type promise to:
better support health commissioners and providers to understand the needs of people with ME/CFS, what local service provision should be available and how existing national initiatives to improve accessibility of health services can be adapted or best utilised for people with severe or very severe ME/CFS – by July 2024.
That’s a far cry from a pledge to fund and commission new specialist severe ME services. And these would be arguably even more complex to implement – as nothing like it currently exists.
Dalton’s response on general service commissioning seems to pass the buck onto Integrated Care Boards (ICBs). So, this Labour government – always one to rest on its laurels rather than take concerted action – is not about to break a habit of its to-date parliamentary term lifetime.
More than three years of waiting, and it’s just more hollow hand-wringing that awaits us
According to Dalton on 2 April, the repeatedly delayed publication is now coming at the end of June.
By then, it’ll have been over three years since then Conservative health secretary Sajid Javid launched work on the damn thing.
The Tory government at the time originally promised to publish this by the end of 2022. Then, it was meant to be by the close of 2023. Then, it was going to be published in 2024 – with ministers rather cagey on the definitive dates. To be frank, we’ve lost count of the number of times first the Tories, and now Labour have delayed its publication. Most recently, Labour had promised it for March. Yet, that came and went with not a delivery plan document on DHSC site.
Purportedly, the government needs another couple of months to shore up its document with stakeholders. This is to – we kid you not – ensure its “as ambitious as possible”. Because apparently, two years and ten months wasn’t quite enough time to do that.
In May 2024, I wrote for the Chronic Collaboration about the Westminster debate for ME Awareness Day. In this, I expressed how:
At a previous debate in 2018, the Chronic Collaboration’s Steve Topple wrote for the Canary that parliament had offered a “ray of hope” to the ‘millions missing’ with the devastating disease. Six years on and this glimmer of possibility has all but faded. Not least because at this latest parliamentary affair, ministers were still hand-wringing over all the same problems raised over half a decade ago.
Now as the auspicious 12 May is rapidly approaching again, the ME community will still be minus the delivery plan. However, with the way it’s shaping up, a meagre but at minimum, benign document full of monumental “hand-wringing”, might be the best that we can hope for.
Featured image via the Canary
