Health minister Andrew Gwynne has shown how little the new Labour Party government will actually do to fix the abysmal state of NHS care for people living with severe myalgic encephalomyelitis (ME/CFS).
This came in the form of exasperatingly atrocious letter he penned to the coroner in charge of the inquest into the death of severe ME patient Maeve Boothby-O’Neill.
The report itself should have Labour moving fast to redress decades of delayed action on curative treatments, and deadly patient stigmatisation. Instead, Gwynne’s reply was a masterful performance in this government’s characteristic brand of hand-wringing.
Severe ME: Gwynne’s response to Maeve’s coroner
Gwynne’s letter was a response to coroner Deborah Archer’s report on the catastrophic NHS failures that ultimately led to the 27-year-old’s tragic death. Archer had disgracefully stopped short of finding the hospital and clinical staff who oversaw her care as negligent – and therefore responsible for the serious catalogue of malpractices. Nonetheless, to some extent, it still shone a light on the paucity of safe healthcare options for people living with severe ME like Maeve.
Significantly, Gwynne highlighted four areas in particular that the report had raised over Maeve’s care. These were how there is:
i. no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe ME/CFS;
ii. no current available funding for the research and development of treatment and further learning for understanding the causes of ME/CFS;
iii. extremely limited training for doctors on ME/CFS and how to treat it, especially in relation to severe ME/CFS;
iv. the 2021 National Institute for Health and Care Excellence (NICE) guidelines on ME/CFS not providing any detailed guidance at all on how severe ME/CFS should be managed at home or in the community and, in particular, whether or not there is any necessary adaption needed to the 2017 guidance, Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.
So, Gwynne’s letter addressed each of these in turn. However, in each case, it exposed the disgraceful lack of urgency and understanding of the issues at the heart of failing NHS care for people living with severe ME.
Funding figures a facade
First up, Gwynne tackled the research and funding elephant in the room. Specifically, he highlighted that:
over the last five years, the DHSC, through NIHR, has invested over £3.6 million in research programme funding for ME/CFS.
While on the face of it, this sounds significant, at best, this would equate to £2.88 annually per patient. Specifically, this is assuming the most prolifically cited figure of 250,000 ME patients in the UK.
However, this is undoubtedly an underestimate. It was first postulated to the UK government’s Chief Medical Officer (CMO) in 2002. Notably, this was based on a prevalence rate study from 1999. Needless to say, this makes it wildly out-of-date – it’s obvious that the number will have increased in 25 years. For one, the UK population has risen in this time.
But more significantly, if the number had remained the same in this period of time, it would suggest people with ME had been recovering. Yet, this is simply not the case – since recovery rates remain incredibly low at an estimated 5%. Given also that there’s no curative treatment, this is obviously exceedingly unlikely.
The National Institute for Health and Care Excellence (NICE) 2021 guidelines also uses this 250,000 figure. However, it draws this from 2018 research using self-reported ME data from the UK Biobank. Again, it’s almost certainly an underestimate. This is not least because the study is non-representative of the UK population. In particular, it only includes data from those aged 40-69 years old.
Less than £1 per patient per year for research?
What’s more, the coronavirus pandemic has happened since, so it’s evident that ME rates will have soared significantly in that period.
There have been other varying estimates, such as 390,000, and 700,000 too. Taking into account this post-pandemic surge, Action for ME more recently put the number at 1.3 million people.
In reality however, this is also invariably underestimating the true numbers of people living with ME. It too uses the antiquated 250,000 figure in its calculation. On top of this, the Canary has highlighted previously that the long Covid statistics are probably an underestimate as well.
Nevertheless, taking this number would put research per ME patient annually over the last five years at just £0.55.
The point is, research spend on ME was already appallingly low. But it’s also not even increasing at a pace to keep up with the numbers of people developing it either.
Compare that too to the £3.3m annual ‘economic disease burden’, which Gwynne himself mentioned at a Westminster debate on ME in May, and it utterly pales besides this.
All talk on training for severe ME
Then there was the “limited training for doctors”, and “especially in relation to severe ME/CFS”.
His answer for this was simply the NHS’s regularly-vaunted e-learning modules. It’s worth pointing out here that the Canary’s Steve Topple reviewed the second of these. Alarmingly, he found it severely lacking in multiple ways.
Moreover, the NHS e-learning modules are NOT comprehensive guidelines – and crucially, they can’t standardise care of severe ME patients.
Some voluntary training isn’t going to suddenly fix the dire state of hospital and community care for people with severe ME. For one, it implies that the barrier to adequate care is knowledge alone, when anyone living with ME can tell you that is fundamentally not the case.
The deeply-entrenched psychologising stigma and arrogance of powerful medical professionals charged with their care is hardly going to shift from a non-mandatory NHS e-learning session, which frankly, many won’t have the time nor inclination to engage with anyway. And if it’s anything like the second module, it won’t be up to the task either.
Realistically, how is this any different from leaving things as they are? ‘As they are’ is the perfect storm of proliferating problems with NHS care for severe ME that ultimately led to Maeve’s death. It could lead to many others’.
Moreover, there’s no urgency here either. The third module’s focus is sorely needed for people living with severe ME – whose lives are most at risk. Yet, for some bureaucratic and inexplicable reason, it’s the third in line for publication. Making sure clinicians are equipped to care for severe ME patients should always have been the priority. Ridiculously however, this is all completely upside down in its priorities.
Lack of specialist services but no real change on the horizon
Next, the letter responded to the lack of specialist services for severe ME patients.
So what was Gwynne’s bold ambition for this? That would be:
- A working group “to determine if additional support can be provided to commissioners of ME/CFS services”.
- And a stock-take of existing ME services.
Groundbreaking stuff. Gwynne is basically saying “we’re considering” services – which isn’t close to the same as committing to actually pull their fingers out their ass and commission them.
Realistically, it’s hard to see how this will amount to anything tangible. And it really needs to do a stock-take to find out that there’s genuinely no specialist care? If that sounds like a serious waste of NHS funding, that’s because it is. In practice, it is very much the government’s way of looking like it’s doing something, without putting in the funds and work to bring about these services.
Because be under no illusions, when the cost becomes clear, Labour is going to drop it like a red hot public investment election pledge, and just as unceremoniously.
For the latest community the Labour government has screwed over with a “we considered it, but it was too expensive” dupe, see the WASPI women. Tell me that’s not what this is?
No commitment to community care
If Gwynne’s responses on the rest of the issues raised in the report weren’t galling enough, it was off the charts level abysmal on the lack of guidelines for severe ME in the community. Arguably, this “concern”, as the letter put it, was one of the most vital.
Without it, severe ME patients have no choice but to stay in hospitals massively under-equipped and unsafe for their condition. Moreover, like for Maeve, many are actively hostile to providing severe ME patients the necessary form of nutrition.
The family of 18-year-old Millie McAinsh needed percutaneous endoscopic gastrostomy (PEG) feeding so she could return home from Royal Lancaster Infirmary hospital. However, the NHS had no provision in place for this in her area – meaning a private care company was the only option available.
Meanwhile, Karen Gordon has been trapped in Conquest Hospital in Hastings, Sussex for over a year. This is because East Sussex NHS Trust has refused her total parenteral nutrition (TPN) in the community. To potentially have this in place, they’ve mandated she make the 100-mile journey to St Mark’s Hospital in London for an assessment. Needless to say, it would be extremely dangerous for Karen to do so.
Not to mention that, when patients like Millie and Karen have gone into hospital needing this – clinicians have dismissed their ME diagnoses. In Millie’s case, and more recently, 24-year-old Carla Naoum, doctors have applied eating disorder diagnoses, and used these psychiatric assessments to section them.
And naturally, they’re hardly the only ones. So it’s also little wonder that many severe ME patients also avoid entering hospitals altogether. Overall, it’s evident that NHS home and community care is enormously lacking, and the process to even get it is a diabolical shamble, and that’s putting it politely.
Half-assed promises
So, it really says it all that Gwynne allocated two piddly passages to addressing this. Not only that, but all he actually had to offer was a nod to the Royal Devon University Healthcare NHS Foundation Trust (RDUH)’s admission protocol and some half-assed pledges to update the 2021 National Institute for Health and Care Excellence (NICE) guidelines.
It’s not nearly enough. There’s no detail about what the government will do with the RDUH protocol, if anything. But most importantly, the document itself is far from comprehensive, or sufficient for the scale of the gargantuan gap in care for people with severe ME.
As one person living with severe ME noted for instance, there’s no detail on tube feeding for instance, or the underlying comorbidities that cause eating difficulties and gastrointestinal issues.
So, as Topple has also pointed out before, all it will really do:
is possibly – not definitely – stop severe/very severe ME patients from starving to death.
In other words, it might help severe ME patients stabilise at best, but it’s not going to move any mountains to drastically help them improve. It’s also virtually no help for ensuring community and home care options are in place.
Ignoring severe ME patients already
For the past ten months, long-term dedicated ME advocate Sally Callow has been trying to hand the government one possible answer to this on a platter. She has called for the development of a detailed, official NHS severe ME protocol.
The Canary has had sight of this Gwynne’s reply to Callow’s petition. In the response, he gave little indication the government would actually do anything about it. Notably, he simply said that he’d passed it onto Department of Health and Social Care (DHSC) officials. In fact, the rest of his letter reads strikingly like his response to Maeve’s coroner’s report. He references many of the same pieces of work in what can only be described as a massive government-aggrandising stitch-up.
And let’s be clear – this was a petition primarily from over 5,000 ME patients and carers. With that letter, he effectively palmed them all off in one fell swoop. If that’s how he responded to the patient community in that instance, who really believes he’ll meaningfully engage with us on the rest he’s trumpeting about?
The notable omission of any mention of this in Gwynne’s response to the coroner’s report speaks volumes. Gwynne could have – indeed should have – agreed to engage with this. It would be one small but significant step in the right direction. But the fact that something so obviously necessary was missing, shows how little the government is really set to heed the report’s warnings.
Missing the scale and nature of the problem
Ironically too, the reference to the NICE guidelines might just be the most promising part of the whole spiel. He wrote how:
NICE has agreed to review the evidence on dietary management and strategies for people with severe ME/CFS published since the 2021 NICE guidelines were introduced, and amend guidance as needed. It will consider appropriate amendments to the guideline on ME/CFS to emphasise the need for appropriate nutritional support. NICE will work with colleagues from RDUH to determine examples of good practice to link into NICE guideline pages.
Again though, it’s not the silver bullet. In reality, improving this guidance on nutritional support is the bare minimum, a starting point, square one. From there, so much more needs to happen, and quickly.
Because, as Topple has also underscored, there’s no NICE guidelines for many of the disease’s common comorbidities. In particular, those that frequently seem to play a part in severe ME. These are conditions like gastroparesis or mast cell activation syndrome (MCAS) that undergird a lot of severe ME patient’s digestive dysfunctions, and eating difficulties.
Overall, Gwynne’s letter wholly misses the scale and nature of the problem. It didn’t scratch the surface of the action that’s sorely needed.
People with ME have rightly had enough of lukewarm words and wishy-washy promises.
Yet here we are once more. We have another health minister and government that clearly isn’t up to the task – and doesn’t really intend to be anyway.
Featured image via the Canary
