UK - NIHR Call for research on Virtual Wards, 2025

[Hutan]

They are nice people but there was never any doubt that it was all about cutting services to suit the politicians. All about pseudo research to provide "evidence-based care". We have been there before too many times.

I'm sure that is true. But, just perhaps, Maeve's death and the inquest has changed things a little. Perhaps some of these cost-cutters can be convinced that some 'Hospital in the Home' type care is an inexpensive way to keep "difficult" patients and all the publicity that goes with them out of hospitals.

 

[Utsikt]

There are so many things you have to get right when caring for someone with ME/CFS, especially when they are on the more severe end of the spectrum.

The consequence of getting those things wrong is not just inadequate care, but also a real possibility of deterioration.

There are very few people I would trust to train the people that will deliver the care. I wouldn’t even trust my own carers yet, because they’ve only been at it for a year since I became severe. I’m not sure I would trust myself either, even though I’ve spent months trying to figure out how I would hypothetically help someone else in my situation.

So any proposal would have to somehow ensure that the right people are put in charge, and that none of the wrong people gain any influence. It would also need a mechanism for continuously monitoring the quality of the nurses, etc., and to have the resources to address any deviations.

And imagine what would happen if this resulted in more reports to the child social services or imprisonment in psych wards based on a BPS understanding of ME/CFS? Based on gaining access to more homes?

If done perfectly, this concept has upsides. But there are so many pitfalls that I’m currently not comfortable supporting it.

 

[Adrian]

e

If there are sensible options like telephone calls or, yes, Teams or Zoom sessions, with the nurse you have got to know and trust then why call that a 'virtual ward'. It is surely a con. In the days when I did domiciliaries the patient could ring in and I would ring back. We didn't even have computers then but I am quite sure we could have done a Zoom.

That is not a what they are calling a virtual ward. These definitions come from https://pmc.ncbi.nlm.nih.gov/articles/PMC9835137/ (and a table - service terminology used in practice)

Virtual wards, hospital at home and remote monitoring

• Hospital at home services provide face-to-face care at home through a multidisciplinary team (MDT) based in the community. They are provided as an alternative to inpatient care [11].
  

• Virtual wards are a hospital-led and managed alternative to in-patient hospital care that is enabled by technology. They enable the delivery at home of acute care, monitoring and treatment to prevent admissions or support early discharge [12]. They use a variable combination of remote monitoring and face-to-face care, and may incorporate remote monitoring, for example, through apps, technology platforms, wearables and devices such as pulse oximeters [3].
  

• Remote monitoring includes aspects of many virtual wards but is a broader term and is not always restricted to people who would otherwise require inpatient hospital care.
  

• Step-up models of care use virtual wards or hospital at home as an alternative to avoid inpatient admission to hospital.
  

• Step-down models of care use early discharge to virtual wards or hospital at home for a condition that would have otherwise required continuation of hospital inpatient care
  

The remote monitoring seems to be a very important part so that patient information can be regularly monitored (including AI based assessment) and then decisions made. There seems to be two common scenarios - people who are at risk of admission to see when (and if) they need admission. I think an article was talking about patients with heart issues, And patients who can be released early with monitoring. Which is where they talk about step up and step down models.

I'm not sure how it would apply to people with ME - what would be monitored what actions would be taken etc. but I think that is a topic worth discussing here. One thought is it could be useful if drugs are prescribed (say LDN) as PwME are often very sensitive to drugs and side effects could be monitored ( but that is all off label anyway)

The other thing I think could be valuable is around minimizing time in hospital for people with ME who are often challenged in such environments.

 

[Adrian]

So any proposal would have to somehow ensure that the right people are put in charge, and that none of the wrong people gain any influence. It would also need a mechanism for continuously monitoring the quality of the nurses, etc., and to have the resources to address any deviations.

That is true anyway. I year issues around carers who for example, think they should talk to someone whilst doing stuff - but where that is too much. I don't think virtual wards would be a substitute for carers anyway. What it could mean is some level of overall regular health monitoring without needing to visit doctors or clinics. But currently I suspect most PwME don't see doctors anyway. I do come back to the idea it could be a useful approach when someone with ME has other conditions if it could make management at home possible.

And imagine what would happen if this resulted in more reports to the child social services or imprisonment in psych wards based on a BPS understanding of ME/CFS? Based on gaining access to more homes?

I would see the risk being that doctors would become more aware of PwME and feel the need to act - where as currently doctors are largely unaware.

 

[Utsikt]

I would see the risk being that doctors would become more aware of PwME and feel the need to act - where as currently doctors are largely unaware.

If they have a BPS view of ME/CFS, the «act» would be to impose GET or CBT on the patients. Or they would withdraw other care or medication for e.g. pain or sleep because it’s fixable through fixing ME/CFS.

I don’t want those people in my life, that’s why I avoid them.

 

[Hutan]

And apart from all that, how is anyone going to do any valid 'research' on this? What are your outcome measures going to be? Why spend £800,000 on filling in some questionnaires when the money could go to some real research?

The research would be 'can we create a useful service'?

• was a service created? what was learned?
• what did patients and carers think of it? do they want it to continue? what did their GPs think of it?
• Selection and dropouts - did any patients meeting criteria choose not to take part? why? did any patients withdraw from the service? why?
• what did it cost? How does that compare with the cost of having a person with severe ME/CFS in a hospital?
• what documentation was produced? Job specifications; Service structure; Care guidelines
• what did the people involved in providing the service think of it?
• did the service facilitate other sorts of research e.g. epidemiology/disease course

Is it an RCT trial? - no. But, we have seen much less worthwhile research. Basically, it's a feasibility study.

And, you and I both know that not doing a Hospital in the Home study for ME/CFS service study is not going to make 800,000 pounds suddenly available for biochemistry or genetics research. The choice we have here is not Hospital in the Home research or good biological research. There is a pot of money for Hospital in the Home research. You could think of it as diverting funds from what will probably be bad research that justifies chucking people who need to be in hospital out early towards something that has a chance of making ME/CFS care better.

Caroline Kingdon sounds great, but she is just one person and she won't be working forever. How do we get more people like her? How do we change the quality of the people providing services to people with ME/CFS?

(I was actually chucked off a local patient charity committee that wanted to set up a clinical service staffed with a nurse primarily because I kept on trying to discourage that idea on the basis that it was not the best use of our efforts and posed enormous risks to the committee, to the charity and to patients. So, I'm definitely not for enthusiastically creating clinical services without a lot of thought. The right people have to be involved and there needs to be a good level of funding and monitoring.)

 

[Amw66]

e

That is not a what they are calling a virtual ward. These definitions come from https://pmc.ncbi.nlm.nih.gov/articles/PMC9835137/ (and a table - service terminology used in practice)



The remote monitoring seems to be a very important part so that patient information can be regularly monitored (including AI based assessment) and then decisions made. There seems to be two common scenarios - people who are at risk of admission to see when (and if) they need admission. I think an article was talking about patients with heart issues, And patients who can be released early with monitoring. Which is where they talk about step up and step down models.

I'm not sure how it would apply to people with ME - what would be monitored what actions would be taken etc. but I think that is a topic worth discussing here. One thought is it could be useful if drugs are prescribed (say LDN) as PwME are often very sensitive to drugs and side effects could be monitored ( but that is all off label anyway)

The other thing I think could be valuable is around minimizing time in hospital for people with ME who are often challenged in such environments.

Remote monitoring is being done for diabetes . ( and perhaps for other conditions)
Glucose monitoring data is shared direct with specialist diabetic nurses who can assess responses and optimize insulin dosage / type of insulin .
Tends to be for newly diagnosed or after significant negative event or when patient may struggle .
This was done for my mother in law after diabetic keto acidosis event , for the best part of a year until she had stabilized and could manage things for herself.
Combined with scheduled face to face appointments with specialist nurse and GP it worked well.

 

[Jonathan Edwards]

Perhaps some of these cost-cutters can be convinced that some 'Hospital in the Home' type care is an inexpensive way to keep "difficult" patients and all the publicity that goes with them out of hospitals.

So that they have an excuse for saying that there is no need to provide single rooms and staff who understand environmental sensitivities in hospitals? Is that what we want? I think people need to be careful what they wish for.

 

[Jonathan Edwards]

I'm not sure how it would apply to people with ME

Right. If its just monitoring it's irrelevant.

 

[Jonathan Edwards]

The research would be 'can we create a useful service'?

None of your bullet points tells us if anything was useful though. Presumably because we can't actually think of anything useful in this format - at least if it just means monitoring.

How do we change the quality of the people providing services to people with ME/CFS?

We have to persuade physicians that it is a real disease and those physicians need to set up services with specialised health professionals who work on the basis that they are managing a real disease. (The inquest changed nothing in this respect.) It is going to depend on having biological evidence that it IS a real disease. Until that happens I don't see any systematic service of value being set up. I think we will get there, even if it has been so slow to date.

 

[Kitty]

Tends to be for newly diagnosed or after significant negative event or when patient may struggle

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.

 

[Adrian]

And apart from all that, how is anyone going to do any valid 'research' on this? What are your outcome measures going to be? Why spend £800,000 on filling in some questionnaires when the money could go to some real research?

I think that is an extremely ignorant comment about service delivery research (and I'm talking in a general sense here not just healthcare). It really isn't about filling out boxes. Its about how to efficiently and effectively deliver services including developing and using new technologies to do so. Often in delivering services its about getting efficient organization that enables staff with the available skills levels to be able to function well, or using automation and streamline processes. Off the top of my head this involves multiple different disciplines such as psychology (looking at organization, decision making and how people interact with services), technology (say comp Sci and EE to develop new algorithms and supporting hardware), mathematical modelling/economics - used to model potential options and understand workflows and processes and RoI, (probably various design and engineering disciplines to build the physical stuff where services work to be efficient).

Even checklists can be very valuable in terms of heath care delivery - for example Checklist helps reduce surgical complications, deaths - surgical checklists reducing complications by a third and deaths by 40%. It may not be glamourous research but it can make a real difference to people.

Maybe its just a different type of research to what you are use to so you aren't comfortable with it!

 

[Adrian]

he research would be 'can we create a useful service'?

I think there are two different questions. One is what would a good ME service look like and can a template be created for the service provisioning bodies. Such a template needs to deal with what help is available now (very little) and the lack of skilled healthcare professionals (hence recruitment/training issues). This needs to address what would really be useful for people with ME and my suspicion is a service needs to be very flexible depending on severity and symptoms. It needs to cover how people get diagnosed, referred to the service, what help can be provided and long term monitoring (probably lots of other stuff as well). I think even with diagnosis there is discussion over the level of expertise needed - can it be done in primary care or do you need specialists.

Then there is a virtual ward question where virtual wards follow a particular structure and scope and whether this (and associated technologies) could be useful (I think either for service delivery for PwME or for care for PwME with other conditions). I am not convinced of the value for people with ME but I think it is worth a discussion and exploring ideas.

 

[Utsikt]

Often in delivering services its about getting efficient organization that enables staff with the available skills levels to be able to function well, or using automation and streamline processes.

But this kind of research is not what was suggested.

If you want to measure the level of the service, you need to know which KPIs that are relevant. And the KPIs that the government cares about does not necessarily align with what would make a difference for the patients.

And we know from BPS studies that you can’t just ask the patients if they are happy either, because there are so many sources of bias.

 

[Jonathan Edwards]

I think that is an extremely ignorant comment about service delivery research

It isn't ignorant Adrian. I worked in this environment for thirty five years. I know exactly what you get out of this sort of thing - and we have seen good evidence of that on here too.

There is no point in assessing the delivery of something when you don't even know what that something might be or whether it is any use.

 

[Jonathan Edwards]

If we have a grand ME/CFS multihub consortium we know perfectly well who this research would go to. This is very much the problem that was raised in that context.

 

[Adrian]

If we have a grand ME/CFS multihub consortium we know perfectly well who this research would go to. This is very much the problem that was raised in that context.

The proposal there is to concentrate on the biological/medical side and the need to get more people who do research into relevant disciplines (such as omics, immune system research etc) involved in ME research to your point isn't relevant.

 

[Chestnut tree]

As long as there is no reliable care path for ME, I would not want to go to hospital, virtual or non-virtual.

However I did get IV-therapy at home. And I was really happy to not have to go hospital several times a week.

It saves a lot of energy, and the sensory issues in hospitals are horrible.

 

[Hutan]

Call wording ....
"The Health and Social Care Delivery Research (HSDR) Programme is interested in funding research on hospital at home (also known as virtual wards) acute care services for adults or children and young people. This funding opportunity covers optimising service design, improving service equity and delivery, evaluating the impact on health and social care, and innovations in service integration.

The proposal doesn't require tele-monitoring. Perhaps there is scope for beds that have built in scales for very severe patients, but monitoring using technology doesn't have to be there.

Trialling a service for people with severe and very severe ME/CFS would be consistent with a study aiming to 'improve service equity and delivery', because right now there is very little service delivery.

It's just a trial, if it fails, it doesn't need to be implemented, or rolled out in more sites.

I think some of the bullet points listed above could tell you if a service is useful.

what did patients and carers think of it? do they want it to continue? what did their GPs think of it?

You can ask people if they found the service useful, did they feel well supported, do they want the service to continue? That's a legitimate question, it's one we have suggested the existing clinics could use before. There are a couple of things that are important in asking those subjective questions. One is selection, so, were there people who didn't want to participate or who dropped out and didn't answer the question - why? One is timing, so, did the service run for long enough that people could get over the buzz of excitement, and start to have a more unbiased view of the service.

A qualitative evaluation is ok for this. I think comments about what was good and what could be improved would be very valuable. (from the patients, the carers, the GPs, the staff)

The thing is, we wouldn't be trying to cure people. We don't need to know what causes ME/CFS to start trying to provide good supportive care.

We would just be trying to help keep the people with severe and very severe ME/CFS alive, well nourished and feeling okay about things. We would just be trying to keep their carers feeling okay about things and able to keep caring. We would be trying to educate the GPs that their patients have a serious condition that requires their involvement.

If you accept that severe ME/CFS is a very unpleasant condition and that caring for people with severe ME/CFS is demanding, then it follows that there should be support. And, right now, there really isn't any.

A trial of a service doesn't stop the development of better services in hospital.

It's just that - here is an opportunity to try something. If we don't find good people to put a proposal in, then it's an opportunity missed. The NIHR can say 'oh, we don't get any ME/CFS research proposals worth funding'.

 

[Adrian]

It isn't ignorant Adrian. I worked in this environment for thirty five years. I know exactly what you get out of this sort of thing - and we have seen good evidence of that on here too.

There is no point in assessing the delivery of something when you don't even know what that something might be or whether it is any use.

I was making a general point about services research and working in industry I see how many areas wouldn't have improved without such research. In my own field for example, looking at how secure software development processes has significantly reduced the number of vulnerabilities and improved the management of them when they are found. Also such research has helped improve security decision making to improve its rational.

And I've seen different work environments some dysfunctional (often in different ways) and this is where people who study organizational structures have important insights into how to optimize organizations. I would say UK hospitals can be very dysfunctional in terms doctors not challenging other doctors and expecting other staff not to challenge them when some doctors are clearly getting things wrong - and I've come across cases where luck has meant that people haven't died.

The checklist work I mentioned has had an impact of outcomes in the medical world.

The virtual ward ideas become interesting as it looks for ways to incorporate new technologies in to healthcare and in doing so provide much more flexible care (which can benefit patients as well as save costs). Given the current rate of technological development this seems highly valuable to me.