NHS bosses reject calls for specialist ME care, 2024, The Times (London)

I can't access the archive link above, but I scanned this earlier and it's not clear to me how this 'rejection' has come about—is this a formal response to something?

 

If the archive link isn't always working properly, here's a Times share link.

 

The Times share link works for me.

It is not clear to me quite what 'specialist ME care' implies here. If it implies care by physicians rather than GPs then I strongly disagree with any refusal. If it implies setting up special 'ME services' I am ambivalent because any such services that get set up are very likely to slide back into the community-based therapist teams we had in the past.

It is not very clear from the article exactly what is not on the agenda, and perhaps more importantly, whether whoever has said it isn't actually comprehends what is being asked.

 

I'm not sure what "ME specialists" can provide at this stage. ME is still a complete mystery, so there's not really any special tests or treatments an "ME specialist" can provide. Education about ME for people treating "patients with mysterious diseases" seems more useful, so that they don't dismiss claims of "feeling much worse after activity X or food Y".

 

It would be good to know more about this as it's just a general statement in the Times. Who rejected it? What was the proposal? Was it just a response to The Times?

With the #ThereForME campaign is going to Streeting the best pathway? It's so unlikely he'll follow this up.

There was Javid who put alot of weight on this as health secretary and we just got a delivery plan which looks rubbish. If he couldn't commission services what good is Streeting going to do?

Surely campaigning needs to be directed at NHS Executive Directors? I think O'Neill went to someone senior and they rebuffed him.

I suppose it's just trying to continue the pressure until someone gives?! But it's going to take alot of money which noone wants to do.

 

Yes I think there will be conflict between us asking this government for acknowledgment and action especially on grounds people are sick with ME symptoms thanks to COVID-19 illness leading to long COVID and to ME, and the panic program to force all the long Covid sufferers back to work, whilst still pretending the pandemic is over and done with. That was a problem under the previous government and it’s still a problem now. Since this government is “determined to get Britain working again” or something like that and to “end sick note Britain” but certainly not by ending pandemic denial and improving work place safety.

The NHS bosses are gonna be just as intransigent I think. But ultimately it will be them that have to deal with us one way or another so maybe they should be the main focus.

But I can see why people would go for the government proper and Streeting and in particular because he’s a prominent public figure, in power.

 

Yes, it is definitely problem with Labour just picking up the Conservative baton of getting people back to work regardless & benefit bashing. They didn't present a different narrative even in opposition so it was unlikely they'd change.

It does make sense for them to go to Streeting but my question is who actually is it that has to say yes for specialist services to be commissioned? I don't know enough about NHS structure.

I suppose an issue is that because there's nothing (well, except crap fatigue clinics) that it's a massive infrastructure job really. And it's easier to leave it alone.

They could have done something better when setting up the Long Covid pathways but they went with the easy 'lifestyle' model.

Even just starting with protocols to recognise the sensory and orthostatic needs of people with ME LC would go a long way and is maybe doable without a whole system in place.

 

There is currently an issue with child audiology services. The Sunday Times is today reporting that 1540 children have been misdiagnosed since 2019 leaving children with untreated hearing problems.
NHS England has allocated no money to deal with this and are criticised for reacting too slowly. Very heartrending stories of children in difficulties.

Wes Streeting was briefed on this on Sept 20th and commented" This is an appalling state of affairs and further proof that the NHS is broken." ( A political statement!-)

I'm posting this because ME/ CFS is going to have to compete for money with situations like this. How does one judge? This is a question of finding money for an established condition affecting young children with their lives ahead. Unfortunately there is still suspicion around ME.

 

If you want specialist ME/CFS services at least somewhere all that is needed is for a local primary care commissioning group to ask for it and pay for it. That could set up a consultant and nurse based outpatient and inpatient service wherever you like without further ado - following NICE guidelines. And there isn't really any other way to get widespread services.

If you want to bypass that and have one or two specialist centres that provide a regional or supra regional advice service - which maybe would be the first thing to do, then someone at the top of the NHS has to divert funds to that. At present there is such a supra regional service at UCLH (that was at Great Ormond Street) for children and adolescents. A policy decision would be needed to set up an adult centre somewhere (or a few). That is only going to happen if the Royal College of Physicians agrees that it is needed, though, because the management will ultimately decide based on medical professional justification, either way. So to go down this route the first and probably biggest obstacle I see is getting RCP to agree that it is needed and designate it to rheumatology or wherever. At present it is likely to be delegated back to rehabilitation and the same old multidisciplinary therapist team with no doctors.

I think Binita Kane is well aware of the RCP stumbling block. RCP politics is a bit up in the air at present because the president has been forced out for proving physician assistants without asking members.

 

I think people should stop clamoring for specialist care or treatment, and instead focus on research. There isn't anything anybody, specialists or otherwise, can do about MECFS other than pacing. ADL assistance and disability program would be great though.

 

Fat chance - no real numbers of people affected and how affected they are, no clear evidence that such a service would help us, no evidence that we use significant healthcare resources and that providing a service would provide ‘cost effectiveness’ by ultimately reducing our use of more expensive healthcare resources, no national directive, no regional/national funding for primary care or another other part of the integrated care systems.

 

I tend to agree, but in some regions plans have been developed for services. The problem is that they are likely to get sidetracked by BACME advisors and end up without a doctor. The need for a service is recognised at least in some places but not the need to spend enough money to make it realistic.

Most of the 200 signatories on the ThereForME letter were GPs - but whether they would put their money where their mouth is or not I wouldn't know!

 

yes it’s the “consultant and nurse based outpatient and inpatient service” that I think there is fat chance of an ICB commissioning without significant incentive!

 

Thank you, that's really informative.

It sounds like a consultant and nurse based on an outpatient and inpatient services sounds like a sensible first step. Could a pilot scheme be set up somewhere?

My mum has Parkinson's and I marvel at the care she has. It's based on a consultant, nurse set up out of the local small hospital and surgery. It works really well. The nurse provides continued care which is excellent for her mental/physical health and then consultant follow ups. She even gets at home visits even though she has c.98% of her mobility and is still travelling the world. Whereas I can hardly get out of bed and there's nothing.

The specialist centres sounds interesting but yes the risk of it descending into a BPS model looks strong if the Royal Colleges are involved.

I suppose this is where the chicken and egg situation happens as there isn't the research to give treatments. But with the NICE guidelines now present the first hurdle would be for them to stick to those and then at least there's some progress.

Rheumatology sounds sensible, especially to avoid the Neurologist FND hole.

Does anyone know if this is what the EDM, started by Clive Lewis, for a Centre of Excellence at the Quadram Centre is? Or is that more for research and not clinical services?

Just trying to get my head around what the practicalities are. I didn't see much in the #ThereForME policy document that looked at actual pathways to get what they want . Not sure if know that behind the scenes or if it's just not been though through. Hopefully yes if Binita is involved.

 

Data on who is affected and how much is crucial for any attempt to raise support and funding to put something in place. We don’t have that data because the diagnosis and coding is poor. When long Covid became a thing NHS England incentivised general practice to add the code for long Covid on people’s medical records by paying them a sort of bonus (Direct Enhanced Service). Practices are also incentivised to diagnose and code some ‘priority’ long term conditions via the Quality and Outcomes Framework. All requires initiative and funding from NHS England.

 

The NHS does seem to be delegating more functions over time to the ICBs (e.g. primary care commissioning framework | how commissioning is changing). Maybe there will be more opportunities at local levels in the future as this continues.

Might it help the political situation if we had better economic-effects data for the UK? There was a reasonable-seeming estimate for Australia that I came across recently derived from both patient survey and administrative data. The language of economics is alien to me but if we had robust data for the UK - that strikes me as the kind of thing that might animate politicians and policymakers and generate media interest; ME/CFS often affects us in the prime of our lives and is very highly disabling so the economic effects will be significant. I don't think of health in economic terms but many politicians and NHS executives presumably do.

The RCP has been utterly intransigent for a long time now (at the NICE roundtable they turned to a certain professor of rehab medicine, who also appeared as a member of their fibromyalgia guideline group). Sarah Clarke was forced out because of the debacle over PAs but that probably doesn't mean anything for us.

 

for that you need this

if we want local systems to fund something then they will want data on how many people in their ICS are affected and how much, and how much that costs the health and care system (as opposed to wider society)

 

The NHS have delegated Long Covid services to the ICBs and they are ending up being closed. One of the reasons is apparent lack of demand. But it seems that diagnosis is half the problem now.

Interesting about the incentive to diagnose and code Long Covid @Haveyoutriedyoga I didn't know that. It seems that many GPs are reluctant to diagnose ME/CFS and want to refer to fatigue clinics to do this, which is a catch-22.

It may seem to alot of Drs why we'd want specialist services when fatigue clinics are already there? But the issue of course is that they are rubbish and in the rehab model and BACME influenced.

Even some of the Long Covid clinics had Drs/Consultants (not all) but because mnny were BPS influenced it was still a disaster.

Changing culture is just slow.

 

I'd argue you need both and they need to work together. Clinicians (and here I'm especially talking hospital specialists) need to see and accept the problem. Even before treatments, there are established community and social supports that can really help pwME and families. Patients need to be able to access that as step one and hospital specialists can facilitate that even if via guidelines to GP colleagues rather than in-clinic assessments.

More importantly for actual progress, clinicians need to be properly and usefully engaged and working together with scientific researchers. Ideally some clinicians will be hybrid (ie MD/PhD), with enthusiasm for laboratory science, but at least generally clinicians can provide a group of carefully assessed patients that meet sensible criteria, so the researchers have a shot at signal > noise. Then researchers can feed back diagnostics that give tools to the clinicians, and then therapeutics can be properly trialled — initially symptomatic improvement and ultimately curative intent.