UK - NIHR Call for research on Virtual Wards, 2025

That's a really great idea @Kiristar.

If the bedrooms of people with very severe ME/CFS were recognised as virtual wards, that might bring a lot of benefits, not least a recognition of the severity of the condition and the crucial contribution of family carers.

A relative of mine was put on a Hospital in the Home scheme. It did seem like a good idea. Of course it is removing patients from the hospital to free up space, but that can be a win-win, when hospitals have multiple patients parked up in corridors and the tv lounges (as they were when my relative was put on the scheme), and when infectious diseases are circulating. We got a daily call from a nurse to check things were okay, but there was also ready access to a doctor if required, and readmission to a real ward would not have required going through the excruciating and very long Emergency Department evaluation.

I think the idea has real potential for severe and very severe ME/CFS patients. If you had a small group of smart nurses dedicated to ME/CFS patients making the calls, and connected to a few relevant specialists and some specialised respite carers, I think that they would soon become very useful.

 

Maybe you could contact 25% Group, Helen Baxter to see if they are aware @Kiristar

 

Possibly Caroline Kingdon could pull a research team together? Perhaps Sarah Boothby or other people with experience of caring for people with severe ME/CFS could be a carer representative? Perhaps a member of @PhysiosforME could be part of the team to advise on avoidance of the consequences of immobility? Nigel Speight?

Could someone contact Caroline to let her know about this? @Jonathan Edwards?

 

I think the idea has real potential; it's something that we could call for in my country and perhaps have a chance of achieving, especially given that the Hospital in the Home and telehealth are already established and govt supported concepts. I'm not sure where we would find suitable staff though - perhaps there are health professionals who have ME/CFS or who are carers of people with ME/CFS that it would suit.

Flagging this to @Deanne NZ, @SNT Gatchaman, @Ravn, @Maddiexxx, @Kiwipom
(Apologies to other NZ members I didn't remember in the moment.)

 

The thing is that for people with severe ME/CFS, suitable care cannot easily be provided in hospital. People want to be at home. But, there is no useful support. Carers and people with ME/CFS are usually left to fend for themselves. This could be a way to provide something useful.

I have been involved, on the carer side, with a Teams meeting in place of a face-to-face outpatient appointment. A young neurologist had presumably been told to get through a whole lot of post-operation check up appointments online. He had never met the patient, he would never meet the patient again, online or otherwise, and he clearly just wanted to tick off the appointments and move on. He had not read the medical notes properly, he was not interested.

So yes, it can be bad (although I suspect in the case of that appointment - and probably your teams meeting, it was not the online format that was the problem, and at least we could waste our time in the comfort of home).

But, what if we could show how Telehealth services could be good? We'd need staff who know what they are talking about and are willing to listen and build up their expertise. We'd need nurses to have an ongoing relationship with the patients and carers, maybe calling once a month (or whatever frequency was needed). I imagine that people with severe ME/CFS and their families would rather have a phone or zoom call with an experienced useful nurse than a house visit from some local district nurse or social worker with no clues about what support a person with ME/CFS needs.

 

When my wife was ill she was desperate to be home and home monitoring would have been great (in reality they released her home and had hospital transport pick her up every few days for the clinic and district nurses and other support when necessary). Which was better than the hospital ward.

I think Helen was at the meeting where it was mentioned.

 

I think there is a question about what people would find useful in terms of things like home monitoring - I'm assuming that virtual ward research is looking at what measurements etc can be collected/sent/analyzed etc to see how someone is doing and whether help is needed - I assume its intended to be much more than telehealth and teams chats with medical professionals. I wonder if there are different questions:

- What monitoring is possible in terms of understanding health? (I assume they look at things like wearables, I remember projects talking about things like microfluidic testing (for blood from very small samples) but I think the technology is still very immature)

- I wonder what (if anything) would be useful with ME at different severity levels?

 

I think you are underestimating the help someone with knowledge could provide via a zoom call. Yes, it could be nice to have a living breathing person sitting at your kitchen table, especially to start with. But, many people are comfortable with online interactions and, if it is that or nothing (and at least in my country, mostly it would be), I think many would choose the online support. Also, it can actually be easier - there is no concern that the kitchen floor hasn't been swept and the laundry hasn't been done etc.

First, I think there is a lot of real information that can help. We have a lot of information in the Living with ME/CFS threads:

• How to prevent contractures.
• How to manage toileting.
• How to ensure someone remains well-nourished when they are having trouble eating.
• Ideas on gadgets that make life easier e.g. good beds, automated curtains, lights, heating
• What mobility aids could be useful and how might they be funded.
• What benefits the patient and the carer might qualify for.
• How to manage pain - a nurse practitioner could prescribe pain relief
• If the patient is a child, ideas about how to optimise social development and education.
• Patient and carer support organisations

Second, I think that someone, even via zoom or by phone, can provide a lot of reassurance and provide a safe way for carers and for patients to vent. It's reassuring to know that the responsibility for the care of the person isn't all on you (the carer), and that if things get worse, someone will be there to help.

Third, I think the nurse could be a bridge to other services as needed:

• When should a new symptom be brought to the attention of the services doctors or the GP or other specialist doctors?
• keeping the GP in the loop
• as a liaison with hospital teams when the person is an in-patient
• getting dental care?
• getting good respite care
• good physios who can come in to do passive exercise with the person to prevent contractures
• good OTs who could come to the house to evaluate for house adjustment needs
• good counsellors
• a dietician

I don't think we should get too excited in our desire to avoid a BPS holistic care model. We know that some specialists have useful knowledge. For example, I've personally witnessed the help a good dietician (@Midnattsol) can be to the parent of someone with very severe ME/CFS who was rapidly losing weight.

Fourth, liaising with researchers and keeping good records that can improve epidemiological knowledge

Fifth, developing methods of care, that can be recorded and used to educate carers and health professionals in other parts of the world.

If 'Hospitals in the Home' or 'virtual ward' is the trendy thing, then it could be worth going with it. To some extent, it doesn't matter what it is called, so long as the people involved are good. But, my experience with a Hospital in the Home scheme was that it really did work for us. The hospital retained responsibility for the patient, not the GP. There was more recognition by everyone that the level of support required was higher than when the person is discharged from hospital.

See my bullet points above. There are more items I could add, and I'm sure people with more experience of severe ME/CFS than I have could add a lot more. Someone like Caroline could train a nurse team. I expect that there are carers of people with ME/CFS who have a nursing qualification or who could get one who could bring a lot of first-hand experience. Keeping BACME out could be a challenge, but it's not impossible, perhaps especially in a country like mine where there are basically no support services at all.