UK - NIHR Call for research on Virtual Wards, 2025

[Hutan]

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.

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.

Yes, that is what I'm thinking about. People with ME/CFS who are at risk of hospital admission, probably primarily due to feeding/weight maintenance issues. People with ME/CFS who would like to be discharged from hospital, perhaps with a feeding tube, but so far haven't been allowed to be. It seemed as though there was a gap that Maeve and others fell through.

I don't think you would need to restrict the service to a particular sub-national geographical location, or, at least, not a very specific one. District nurses/support workers might still call in on the patient, but there would be some management/support for those nurses from the ME/CFS hospital in the home service.

I note that the Health and Social Care Delivery Research group has two funding calls out at the moment. One is on the Hospital at home concept, one is much more general about health and social care delivery innovation (closes 29 July). That considerably opens up possibilities. With Maeve's inquest having made it clear that there are big problems, and the delivery plan soon to come, I think funding something around providing better care and support to people with severe and very severe ME/CFS and their families might be seen as attractive.

I think if there was a group of people or an organisation interested in trying something different in the UK, it could well be worth talking with the team there to work out exactly what would be fundable.


https://www.nihr.ac.uk/research-funding/funding-programmes/health-and-social-care-delivery-research

 

[Kitty]

Yes, that is what I'm thinking about. People with ME/CFS who are at risk of hospital admission, probably primarily due to feeding/weight maintenance issues. People with ME/CFS who would like to be discharged from hospital, perhaps with a feeding tube, but so far haven't been allowed to be. It seemed as though there was a gap that Maeve and others fell through.

It's a great idea, but lot would depend on the conditions of grant. Usually existing providers apply for them, and if that's the case here integrated care boards or individual hospitals would apply to run a local service. They'd use their knowledge of the particular issues in that area to make a case.

If that is the way it works (and I don't know, of course) it would be tough to apply for a service for very severely ill ME/CFS patients. Most hospitals will never have seen one, and no one knows what part of the country the next person in Maeve's situation will live in.

It might be feasible to try for a national centre of excellence, but applicants would still run up against the problem of demonstrating they have the experience and capability to run it. The best case scenario might be that charities are allowed to apply, because if AfME or the MEA teamed up with their local hospital to trial a new service, it might look at lot more appealing.

Of course I might be making up difficulties that don't really exist. But it's fairly likely applicants will have to demonstrate demand, that's pretty ubiquitous when it comes to public sector service delivery grants. We know the need is there, but it isn't not quite the same as demand. It wouldn't be easy to evidence it well enough to stand up in a competitive bidding round.

Anyway I'm probably getting boring now with my objections, so I'll try and shut up!

 

[MEMarge]

Yes, an elderly relative had it. One of the advantages over GP monitoring was that they could loan equipment and train patients and carers to use it, which probably couldn't be done by a local surgery.

My aunt struggled with isolation in hospital because her hearing was poor and she lost a lot of weight because the food was horrible, so for her it was a game changer. It could probably prolong the lives of some elderly people, who lose function simply because they get marooned in hospital for too long.

But the only application I can see is for ME/CFS is for very severely ill people on TPN. And it'd be about managing the TPN, really, not managing the ME/CFS.

This would definitely have helped Graham, who had moderate ME, for at least some of the time he was in hospital.
He had problems hearing/understanding. His wife and son could not visit, partially due to risk of catching Covid and part due to their health.

He couldn't eat onions/garlic and several other veg, so getting enough food was a huge problem...

 

[PhysiosforME]

I have so many thoughts on this!
In my day job I have operational oversight of a virtual ward for older people with frailty (known locally as hospital at home). Mainly for people with moderate to severe frailty who are unwell and would otherwise have to go into hospital. For this group of people a nurse, doctor or therapist tends to visit them most days depending on needs (rather than remote monitoring, although we can monitor vital signs remotely). Although we do provide some additional care support, in most cases the family are keen to help to prevent a hospital admission which is often disorientating and unsettling (especially for those with dementia). It's not perfect - for example we are only just starting IV antibiotics at home and our capacity is limited but patients and their families really like the fact they remain in their own home. There has been research done about cost effectiveness for the older population which stacks up quite favourably.

I have often thought there had to be some way of supporting people with ME through a virtual ward model - and now that virtual wards are becoming more common I wonder if there is some way of a hub and spoke model with central expertise in ME linking in through local virtual ward services. TPN would seem like an obvious intervention for a virtual ward (recognising the many challenges with TPN that currently seem to exist!)

That's as far as I have got with thinking about it!!!

 

[Utsikt]

services. TPN would seem like an obvious intervention for a virtual ward (recognising the many challenges with TPN that currently seem to exist!)

What’s TPN?

 

[Yann04]

What’s TPN?

Total Paterternal Nutrition
feeding through veins

 

[Jonathan Edwards]

In my day job I have operational oversight of a virtual ward for older people with frailty (known locally as hospital at home).

In what way is this different from the home visits of 50 years ago?
It doesn't sound very virtual if you actually go in and see people in the flesh!!

 

[Utsikt]

In what way is this different from the home visits of 50 years ago?
It doesn't sound very virtual if you actually go in and see people in the flesh!!

Can’t «virtual» mean «almost» or something like that, as in «virtually everyone wore red to the match»?

So a virtual ward would be «almost a ward», although that’s probably a generous description.

 

[Jonathan Edwards]

So a virtual ward would be «almost a ward», although that’s probably a generous description.

It may indeed - we can't actually afford a ward but you can have something that almost seems to be a ward. There won't be anyone there when you really need someone but we are trying to cut back on things like that.

 

[Hutan]

It may indeed - we can't actually afford a ward but you can have something that almost seems to be a ward. There won't be anyone there when you really need someone but we are trying to cut back on things like that.

The thing is, if the ward is stuffed to the gills with people, and rife with communicable disease, and woefully undermanned, with unappetising food, if the doctors don't visit much, if you are mostly just sitting in a bed waiting for something and you aren't at immediate risk of some sort of medical crisis, it's a lot nicer and often better to be somewhere else.

My relative was recovering from an operation, and came home with Covid-19 and scabies, for example.

These wards are busy, and noisy and generally uncomfortable places to be, even if you don't have sensory issues. Having a loved one in hospital is also often very disrupting to family, who may be having to make long commutes each day and paying a small fortune in hospital parking fees.

If there can be good monitoring at home, it can sometimes be the lesser of two evils, sometimes by a long way.

 

[Trish]

It occurs to me that changes in maternity care provide a sort of virtual ward situation. When I had my first child in 1980 the standard was that everyone stayed in hospital for a week after giving birth. I was in a very busy ward with 12 other mums, all with our newborns in cribs beside us. I barely slept for the whole week, and the nurses were so busy we barely saw them except for a quick daily check.
For my second child 3 years later I was in hospital for only 2 days, and a midwife visited me daily once I was home and a gp visited at least once, and I had numbers to phone in emergency or for advice. That was so much better.

 

[Jonathan Edwards]

If there can be good monitoring at home, it can sometimes be the lesser of two evils, sometimes by a long way.

Of course, nobody is disputing that. What I think people should be very wary of is the idea that somehow 'sort of being in hospital' is a good description for what used to be a standard form of care and now isn't because there are much poor resources people aren't even looked after at home.

If a procedure is called a 'virtual ward' then before you have said Jack Robinson it will be subject to protocol standards for virtual ward procedures and you will have to fill in forms to show that it virtually is virtually a sort of ward situation. So instead of getting on and looking after people we will have health care professionals sitting at their computers logging in just how well they fit the protocol requirements. Just like everything else these days.

 

[rvallee]

The thing is, if the ward is stuffed to the gills with people, and rife with communicable disease, and woefully undermanned, with unappetising food, if the doctors don't visit much, if you are mostly just sitting in a bed waiting for something and you aren't at immediate risk of some sort of medical crisis, it's a lot nicer and often better to be somewhere else.

My relative was recovering from an operation, and came home with Covid-19 and scabies, for example.

These wards are busy, and noisy and generally uncomfortable places to be, even if you don't have sensory issues. Having in a loved one in hospital is also often very disrupting to family, who may be having to make long commutes each day and paying a small fortune in hospital parking fees.

If there can be good monitoring at home, it can sometimes be the lesser of two evils, sometimes by a long way.

For sure, if it were me and there were no reasons necessitating to be in a hospital, I would 200% go for this. Hospitals are wretched places to be in even when healthy. No one wants to go there by choice or spend more than a minute than necessary. Have you seen how many people die in hospitals every day?!

 

[Sean]

I thought it had been long accepted that getting a patient back to their normal home environment and daily routine, as soon as medically safe to do so, was optimal in almost all cases, and certainly what patients want.