UK - NIHR Call for research on Virtual Wards, 2025

Adrian said:
The proposal there is to concentrate on the biological/medical side
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But presumably some of those on the service delivery side who signed would like a look in too. Since we have no means of controlling what a centre would focus on I think it is naive to assume it will all be the way intended.

We have had service delivery studies in ME/CFS going on for years under people like Chris Burton and they are the people who will submit proposals and be seen to have the credentials to do more of this. I wonder if we learnt nothing from the issues that remain after NICE 2021.
 
Jonathan Edwards said:
We have had service delivery studies in ME/CFS going on for years under people like Chris Burton and they are the people who will submit proposals and be seen to have the credentials to do more of this.
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Well, yes, perhaps the BPS people will put a proposal in. And, if they are successful, they will operate things the way they want and train the staff to believe the things they want.

But, there is also an opportunity for non-BPS people to put a proposal in. There are good people around who could make a convincing case for a non-BPS support service for severe ME/CFS. The non-BPS proposal could point out exactly how poorly the BPS services have performed, they could quote the Swiss research that found that people despair when they feel disbelieved. If the good people were funded, they would be the ones saying how things are run.

The people with severe and very severe ME/CFS are a relatively small group, and I think they tend to be pretty well informed. It surely would be possible to get some compelling quotes from these people to explain why they want a service, an agnostic service if you like. One that just aims to support and doesn't make any claim to know the cause of ME/CFS or how to fix it.

Right now, a lot of these people are pretty invisible to the NHS. One day, I hope fairly soon, there will be a treatment to trial with a reasonable chance of helping and we will want to know if it can help people with severe and very severe ME/CFS. If you have set up the support service that has tracked people's condition for a year or two, and you have nurses that these people trust, you have a perfect cohort to invite into a trial.

(Similarly, I think there would be scope to try to get some funds to trial a service in New Zealand.)
 
Hutan said:
But, there is also an opportunity for non-BPS people to put a proposal in. There are good people around who could make a convincing case for a non-BPS support service for severe ME/CFS.
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Are there? We are talking about the UK. Who would be in a position to put in a bid?

The only non-BPS NHS people I can think of are likely to give patients anticoagulants and IV saline.
 
Yes, there is that risk.

But, surely there are some? Would they have to be NHS people? What about a team related to the ME/CFS biobank? It could be partly sold as developing research infrastructure (although care would not be contingent on participation in treatment trials, providing disease course data could be encouraged).
 
I still wonder if we might be at cross-purposes?

As far as I understand, it this isn't about community care. It's care for people who would otherwise be in hospital. That would apply to some people with ME/CFS, but not many.

The rest of us mainly need a doctor who gets it, working in a system that recognises it causes significant and often severe disability.

Being able to access the domiciliary care available to other severely disabled people would make an enormous difference, but a lot of that wouldn't come under this scheme. It's GP based, not hospital based.
 
Hutan said:
Well, yes, perhaps the BPS people will put a proposal in. And, if they are successful, they will operate things the way they want and train the staff to believe the things they want.
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They may but the importance of having patients on board (PPI?) makes it more difficult these days. Also I suspect they have a bad reputation as everyone knows they have failed to deliver. But as with everything there is a danger that they put in a proposal and it gets good reviews.
 
Adrian said:
They may but the importance of having patients on board (PPI?) makes it more difficult these days. Also I suspect they have a bad reputation as everyone knows they have failed to deliver. But as with everything there is a danger that they put in a proposal and it gets good reviews.
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They could just do what they do in Norway and use something similar to Recovery Norway as PPI.
 
Hutan said:
But, surely there are some? Would they have to be NHS people? What about a team related to the ME/CFS biobank? It could be partly sold as developing research infrastructure (although care would not be contingent on participation in treatment trials, providing disease course data could be encouraged).
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This is why we need more researchers looking into ME. For example, are there groups who look at managing chronic disease who could be interested in ME as an interesting chronic condition.
 
Adrian said:
Also people who may end up in hospital as a preventative thing - to try to avoid admission.
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True, but ME/CFS is a rare enough cause of hospitalisation that it would be difficult to make a good funding case.

Applicants to the scheme will probably need to provide evidence of what the issues are, and set out how a virtual ward scheme could prevent some of them arising or offer better outcomes once they have.

The few doctors with experience of treating people with severe ME/CFS wouldn't be able to offer the same weight of evidence as specialists in other conditions, and there'd be almost no statistics or cost information to back up the case. Also, such treatment as is available—which is pretty much limited to feeding people who're very severely ill—can often be managed at home anyway.

I'm not opposed to the idea at all, I've seen the benefits it can offer when used appropriately. It's just hard to see it working for people who for the most part only ever need inpatient treatment for unrelated conditions.
 
Might BPS ppl apply yes but tbh if we see that as likely then to me, surely that makes it even more important that we do develop a decent biomedical-led proposal with good PPI embedded. Otherwise it feels to me we are just giving up ever trying to improve things, leaving them to get a stranglehold on services and just sitting on our hands waiting for the elusive holy research grail which may or may not materialise in my lifetime.

Surely research is itself another opportunity for educating HCPs about the need for PwME to receive clinical and not bps model of care and the need to follow NICE 2021 and not GET or FII patients into further deterioration?

I wonder if one interesting virtual ward objective measure might be monitoring hrv? It's always been a reliable indicator of stability including how I react to meds for other things for example. And it is good for trend analysis, am I stabilising and become a bit more resilient or has my system been overloaded and I'm deteriorating. (so might need enhanced clinical VW support). This could be monitored remotely with tech.

There's definitely a case to be made around equality of access to care. For example what about blood tests these are impossible for me to access as the regular district nurse channel refuse to register me as housebound and my GP doesn't do home visits so could a better solution be found there via a VW pathway?

One success factor could be avoiding need to be in hospital eg by accessing pain meds or support regarding a new symptom, dietary interventions or whatever ?

And another could be a streamlined quicker admission due to altered processes like bypassing A&E triage step going straight to the right ward.

A couple of months ago I had to call an ambulance for GI blockage and endured 12 hours of A&E. Luckily it was a quiet night in a smaller hospital and I got a darkened, side room for much of the time but even so the impact on my ME of leaving home has been catastrophic. The worst thing was the discharge as my severe needs were just completely ignored at that point in the process and I was literally chucked on the street, not treated as a vulnerable case. A VW could potentially prevent that sort of mishandling and ensure RAs get made if I had had a VW contact overseeing the admission and hospital stay.

Regardless of the cause of the intervention, I think finding some way to expedite those admission/discharge scenarios in advance, through maybe accessing a VW early as the problem developed would be a good thing for severe.

I imagine this as being potentially most relevant in v severe and preventative dietary support, but that is not something I know enough about to make constructive suggestions.
 
Kitty said:
True, but ME/CFS is a rare enough cause of hospitalisation that it would be difficult to make a good funding case.
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I'm not opposed to the idea at all, I've seen the benefits it can offer when used appropriately. It's just hard to see it working for people who for the most part only ever need inpatient treatment for unrelated conditions.
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I did wonder about this as a potential issue. Though if LC with PEM was also included and with ME numbers are now estimated as higher (without wanting to go off topic and set off another debate) then hopefully there might be enough patient density in the big city conurbations like London / Birmingham / Manchester ??
 
Kiristar said:
There's definitely a case to be made around equality of access to care. For example what about blood tests these are impossible for me to access as the regular district nurse channel refuse to register me as housebound and my GP doesn't do home visits so could a better solution be found there via a VW pathway?
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I couldn't agree more about access to care, but the funding scheme doesn't seem to be about that. It's about acute care, where people are either already in hospital, or are at risk of being admitted because of difficulties managing conditions where a lapse could result in a major escalation.

Technically, there's no need for a virtual ward for most people with ME/CFS, including many of those who're severely ill. GPs should recognise the impact and severity of their disability and adjust their provision accordingly. They can already provide district nursing to people with conditions like dementia, advanced Parkinson's or MS, lung disease, poorly controlled diabetes, etc.

A project aiming to extend this kind of care to people with ME/CFS seems unlikely to gain funding under a scheme like this because (on paper at least) there's nothing to stop them accessing it now.

The fact that we can't access it because of a wall of inaction, ignorance and prejudice is a different problem. I honestly don't know what the solution is, but it seems unlikely to involve acute hospitals.
 
Kitty said:
Technically, there's no need for a virtual ward for most people with ME/CFS, including many of those who're severely ill.
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Just to quote myself—what I ought to have said is that there's currently no need for a virtual ward.

Obviously, a disease modifying treatment using drugs that need intensive monitoring could change that. If we had some in Phase III trial now, after strong Phase II results, it might make an excellent model for ways to use virtual wards. The funding case could go from almost nonexistent to pretty strong.
 
Kitty said:
I still wonder if we might be at cross-purposes?

As far as I understand, it this isn't about community care. It's care for people who would otherwise be in hospital. That would apply to some people with ME/CFS, but not many.

The rest of us mainly need a doctor who gets it, working in a system that recognises it causes significant and often severe disability.

Being able to access the domiciliary care available to other severely disabled people would make an enormous difference, but a lot of that wouldn't come under this scheme. It's GP based, not hospital based.
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And the Oi type stuff is probably the one safe ish thing that might already be somewhat having to be done at home anyway but could transform many of our lives if we had people working out what actually helps in pwme who have it (as the do exercise type advice in pots leaves patients with a no win, there must be other options that could be tried on a clinical decision basis)
 
Jonathan Edwards said:
If a treatment got approved I am not sure why there would be a need for virtual wards even then.
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I was thinking that sometimes when people are started on drugs, they need to attend hospital clinics for regular blood draws and monitoring. Being able to do that bit at home would make treatment much more accessible for severely ill people, who might need more intensive monitoring anyway. Some are really susceptible to medication side effects, and ME/CFS has so many symptoms that it can be genuinely difficult to know the difference between "of concern" and "interesting new shade of normal".
 
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