COVID REHAB – Now Lives Have Been Saved, They Now Need to be Made Worth Living
Webinar Blog and Q&A summary, 11 Nov 12:30-1:45
Connect Health Change brings you the fourth in a series of webinars to make and embed transformation in healthcare. Aimed at system leaders and clinicians across the NHS, the webinars provide practical solutions to the challenging issues we are all grappling with.
In the session, we discussed the need for long term support and rehabilitation for survivors of COVID-19, as the lasting effects of the disease emerge from the near overwhelming demands on acute services. This webinar discussed if traditional community services are set up to provide COVID rehab, is there a need for specialist services to focus on supporting COVID recovery, who are the best clinicians to provide rehab to COVID patients and how do we approach COVID rehab from a commissioning perspective?
- “Panel were experts in their field.”
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Dr Emma Ladds, General Practice Academic Clinical Fellow, Nuffield Department of Primary Care Health Sciences, University of Oxford – highlighted what we mean by Long COVID and the implications this has for primary/community care.
Question 1: What would your top tips and advice be for clinicians, particularly in primary care, when faced with a consultation with a patient with Long COVID?
Answer: I think one of the challenges is what I already alluded to, that every patient presenting with Long COVID can present differently. So I think really listening to the patient and hearing their story and not dismissing them. A lot of patients I’ve spoken to have talked about very distressing encounters with health care professionals and often GPs, where their stories just weren’t believed. And some of that relates to GP’s understandings, or lack of, about Long COVID itself. I think that’s getting far less so, but a lot of it is just about actually not listening or giving the time to the patient that they really need.
Question 2: What is the core skill set that a service would need to be able to rehabilitate these patients? And what support as a GP does she feel that she needs to complement her skills?
Answer: I think you asked what’s currently happening at the moment as well first. And I think the answer is it’s very patchy, it really depends where you are.
So, for example, where I work, I have a community team who are two respiratory nurses, who normally work in the community but have a background in critical care, who recognize that there was an enormous need for people with Long COVID. And of course being respiratory nurses, their focus is mainly respiratory and breathlessness. And so whilst they try and do a quite comprehensive approach to somebody, a lot of what they offer is focused around breathing rehab, and they’ll be teaching exercises to try and help with dysfunctional breathing patterns and that sort of thing.
So what could I do within the community? Well I could really do with somebody who, alongside having those sorts of respiratory skills, maybe had a more general training background as well. And perhaps somebody who was able to think a bit more about rehabilitation from other specialist settings. Because I completely recognize that this is a new condition for everybody. So we say rehab, we don’t have the evidence to really know exactly what sort of rehab would be best. Therefore, we’re always trying to extrapolate from our experience of other conditions. For example, people who have experience in helping with stroke rehab or other neurological conditions and know some of the challenges from that, or from people who work with the community heart failure teams. I have some very good Allied Health Professionals there who work with patients with quite severe fatigue and help them cope with that.
So I think my answer is it’s not simple, and there’ll be people coming from all sorts of different backgrounds, and we’re trying to pull together pieces of a jigsaw, and nobody’s got an easy answer and there isn’t going to be a single trained person who’s there ready to go, but that’s really what we need to have.
Question 3: What role will Work and Vocational Rehabilitation take? And are there plans to include these in the guidelines?
Answer: As a GP I’m really aware of how much of an issue that return to work is. Yes, I think we very clearly have to include Occupational Health and returning to work as an issue in the guidelines. I obviously don’t have any knowledge of what’s in them, but from my side I think that would be one of the most important things to emphasise.
Question 4: There’s potentially a workforce available, and we’ve heard from yourself and other speakers that’s quite a complex problem. But we’ve probably also identified that there probably aren’t the clinicians out there with those skills as well. So how do we bring it all together?
Answer: Well as I was listening to Jack, the two things that I really agreed with and really resonated for me were, that we can’t let perfect be the enemy of the good, and that we all do have particular skill sets and expertise in certain things, and there will be some knowledge transference that all of us are able to make.
So my feeling is that there is a workforce out there. It isn’t ideal and it shouldn’t mean that we accept that and that we stop advocating for better resources and more appropriate numbers of workforce personnel. But equally we do need to do something. And if we just wait for the perfect solution, I don’t think we’ll get anywhere. So I think we have to try and make use of what we have as appropriately as we can at the moment, while still doing all the advocating and research that we can to make the case for more resources.
Question 5: Do the speakers feel that there’s potentially a role for the case management in these situations about pulling the resources together, coordinating that care and getting the right care in?
Answer: Yes very strongly. And that’s actually something we’ve clearly advocated for in a new piece of research that’s coming out. I should emphasise I’m not a policy maker, or have any policy influence. So the way that we try and make a difference is to produce research off the back of what Long COVID patients are telling me and use that to present to commissioners and to other policy leaders. But yes we feel that’s a key point.
Question 6: If you were a Commissioner or Manager tasked with addressing your community’s needs around COVID rehabilitation, what would the steps that you would be taking?
Answer: I think, very clearly, you need to specify exactly what the aims of your service are, what it’s trying to achieve and what outcomes you’re going to use to measure success of that.
I think it has to be, although you should have a national agreement about what sort of principles should guide your service, actually every locality is going to have different assets and be able to do it differently. So I think it does have to be locally determined and it may well be that, actually, your service ends up being a mixture of virtual and face-to-face. I think that’s essential and distributed between the community and secondary care. But I think the way that that interface and the coordination happens has to be very carefully managed. And the way you do that is through having very clear lines of clinical responsibility. And whether that’s a case manager or whether actually to have a transfer mechanism so we have a lot of shared care between primary care and secondary care specialists for example.
And I’m obviously not a rehabilitation specialist, I don’t know much about the different specialties and the different distributions of the workforce. So I can really only speak from my experience as a GP. But the shared care model in primary care tends to work quite well. So I think that would be my way forward to have national service specifications but actually locally determined in collaboration with everybody who’s going to be responsible for delivering them ultimately.
Question 7: How do we get the patients and public involved in setting up these services?
Answer: The way I’ve been trying to do this with my team is by working with Long COVID patients during our research projects, to try and get their views and experiences and work with them, to help gain an appreciation of what would have been better for them. And we’ve been recruiting through online media and through social media. We’re obviously only getting a proportion of the patient views with Long COVID.
So we’d like to, very actively, try and speak to people who are less likely to come forward often. So people with mental health problems, for example, or people who are less engaged and try and work with them further in our research. But I think when we’re commissioning services we need to try and reach out to other patient groups as well in the same way.
Question 8: We know that Black and Ethnic Minorities have often been more affected by COVID for various reasons. How do we reach out to those communities and make sure that they’re included, but also get the rehabilitation they need because historically they don’t?
Answer: That’s one of the main groups that we’ve really struggled to reach for our initial pieces of research. We’ve tried to do it by specifically recruiting those kinds of individuals through social media, and that helps a bit. But I think then going out to the community, so working with local community leaders and some faith leaders, can be helpful in that. But also just local community and leaders who tend to be quite well known or participate in, for example, PPG groups in local practices that’s how we’re planning to try and do it further.
Prof. Trish Greenhalgh, Professor of Primary Care Health Sciences and Fellow of Green Templeton College at the University of Oxford asked if Long COVID can be adequately treated within existing services, or if there is a need to commission new services
Question 1: Do you think that the current system, the existing services, are geared up to provide what you have described? Or do you feel that that we need to create specialist services?
Answer: Well there’s two things here. One is, do I think the current service is adequate and I think I’ve already said the patients say no. The second is, is the solution to that inadequacy specialist services? And I think I’ve already answered, not necessarily.
There needs to be a specialist rehabilitation service, which is staffed by a multi-disciplinary team, where the patients get the full monty of a full assessment, specialist input from people like respiratory physios et cetera et cetera. But as a GP I would also say, and I’m also quoting Matthew Knight who Emma and I published with, he runs the Long COVID clinic, and says actually, many patients do not need advanced tests and in fact should be protected from being sent for lots of scans and blood tests, because they’re getting better.
So we hear a lot about the burden of Long COVID, and it’s an absolutely ghastly disease, we hear less about the people who are getting better from it. But as someone who practices a GP for more than 30 years, it’s extraordinary what happens when people convalesce. They often can just get better by getting back to doing the things that they did before they got ill. And whether you’re recovering from a Hysterectomy, or a hip replacement or whatever, sometimes all you need is a bit of generic physiotherapy and a link with your GP who sees you every few weeks and just checks in that you’re doing okay. So I think services, both general and specialists, need to be given an injection of resource.
Question 2: Around the resources that you talked about, are there signs that the resources that are needed to set this up are going to be invested?
Answer: I’m not any more privy to that than anyone else. The only information I have is what’s in the public domain. And I think the government has got this five-point plan. And, from memory, I think this £10 million has been allocated. The trouble with sums of money above about a million, is none of us can work any of it out. How many people do you need? I haven’t seen the health economics of this. It doesn’t sound like a massive amount, to be honest.
But I don’t know is the answer. Someone needs to certainly do the sums and publish what we would get for that 10 million and which services it’s going to go into. And when that’s done I rather suspect that some people will be standing up saying we need rather more than that.
Question 3: What do we see the role of the voluntary and third sector being within this?
Answer: Well maybe we should ask the voluntary and third sector that, but if you remember when I talked about four tiers of service, with tier one being what I called self-management and using online resources and that kind of thing, I would say that the voluntary sector have a really important role to play in that. And I know we’ve been working with Long COVID online communities, and they’re supporting one another in a big way. But also in my local community I know that there are all sorts of organisations and groups, some of them for which are a bit niche, some of the ethnic groups, the faith-based organisations, that kind of thing.
I am absolutely sure they are going to be key. Whether or not the government is going to give them any money is something you’re going to have to ask the government.
Dr John Etherington CBE, President at The Faculty of Sport and Exercise Medicine UK, Medical Director Pure Sports Medicine discussed the advocacy for developing a COVID rehabilitation programme and where we are now.
Question 1: What does good look like within a rehabilitation service?
Answer: Well I think again, thinking about my experiences when we have countless battle casualties coming in, one of the big problems is understanding what the medical issues are, making a proper diagnosis and we’ve heard this is a really complex disease with complications that we don’t really understand. So you’ve got to have a medical input to this, you’ve got to diagnose what the issues are, you’ve got to assess these people properly, and including looking at their oxygen saturations but pulmonary function, but also other measurements of exercise tolerance, so that we understand this disease better. So that we can advise better. At the moment, we are giving advice to people based on what we think will probably work ,but we don’t know
The second thing I would say is that you’ve got to have a good MDT. And that really goes without saying that within this audience. The strength is in the combination of professional expertise. Nobody can do this alone and that includes, as we’ve heard earlier, it’s not just a pulmonary condition, but it has really important pulmonary complications. So we need expertise from a wide church. We’ve got to set goals which the patient wants. And manage that outcome, and measure that outcome. And more importantly valuing outcome, return to work being one of them but not the sole thing that we need to value.
The one lesson I learnt, I would say from my battle casualty experience, is that we didn’t start researching early enough, largely because we’re too busy. Our research needs to go in there in now. And the fifth and final point I would say is that it needs to be resourced. This is not a nice to have. We’re putting resources in every area of the economy at the moment but not this.
Question 2: There’s potentially a workforce available here, and we’ve heard from yourself and other speakers that’s quite a complex problem. But we’ve probably also identified that there probably aren’t the clinicians out there with those skills as well. So how do we bring it all together?
Answer: Well I think there’s the workforce out there to manage these type of people.
I think it’s more to do with coordinating their activity and recognising that not everything can be delivered virtually, or more particularly that not everything can be best delivered if people ,the professionals, aren’t working together. I think there’s definitely a role for telemedicine and virtual consultations. But it shouldn’t be seen as the default setting because it’s much cheaper. And we all know that it’s better for the patient when the multidisciplinary team is working together with them. It’s just about coordinating that activity and having the facilities to deliver the rehabilitation that they need.
So I think there are people out there who know what to do, it’s just about coordinating that and having some direction and strategic direction, particularly from the NHS England about how to bring that together. But, I don’t feel like that, at the moment, NHS England is an organisation which wants to do that. That’s, I think, the biggest stumbling block, it doesn’t see its role as a strategic manager of this process.
Question 3: Do the speakers feel that there’s potentially a role for the case management in these situations about pulling the resources together coordinating that care and getting the right care in?
Answer: Yes I think there is a role for that case management and case managers. What I think is important is that this links together real services. It’s not trying to find a Physio here and a Psychologist 20 miles away. It’s trying to provide a real service for the rehabilitation of these people and that’s a challenge.
Question 4: If you were a Commissioner or Manager tasked with addressing your community’s needs around COVID rehabilitation, what would the steps that you would be taking?
Answer: There is national commissioning advice brought forward from NHS England recently and that talks about assessment clinics, and it also talks about where the funding stream will come from to set up these assessment clinics.
It’s a little light on operational detail, it does say something about what good looks like. It doesn’t really tell me how you are going to access the rehabilitation assets that you need for these people
But there is a first step in what the assessment clinic should look like and where the money can come from to support that. So what I would hope is that commissioners recognise that this isn’t just going to be an extension of pulmonary rehabilitation, or cardiac rehabilitation, or anything we’ve ever done before. This is going to be a bit more complex than that and it needs much wider engagement with different specialties to get a good outcome.
Jack Chew, Director MSKReform, Physiotherapist considered the role of Rehab Recruits campaign for MSK Therapists seeking an efficient and strategic deployment in the NHS.
Question 1: You clearly identified a workforce that’s available to support COVID rehabilitation, but do you feel, particularly from what we’ve heard earlier on the call from Emma and Trish about the complexity and the multi-system nature of COVID and Long COVID, do you feel the MSK Clinicians have that skill set? And what do you feel is the core skill set that’s needed for COVID rehabilitation?
Answer: To me, I see that there are going to be areas in which certainly it would be remiss of MSK care professionals to lean too far into stuff that they wouldn’t be appropriately special at. And I suspect my lack of knowledge as to where we’re at with Long COVID, particularly their research, is something that I don’t want us to suggest that we could do things that we couldn’t.
But I suppose, when I look at the understanding of broad functional issues that seem to occur, that are very individual. Let’s not try to look for patterns where they don’t appropriately exist. These individual needs are going to be based on that biosocial and beyond, into the holistic factors that affect symptoms. I think that the MSK workforce is certainly in a situation where it parks its differences, I think it’s in a very good place to be able to assess, and at least triage for the pieces in which we’re not appropriate for. And then we’re always doing that. Just because there could well be symptoms of Long COVID or other things that may be cropped up, we’re quite used to recognising those. And it would be quite isolating if we were to suggest that because it’s not perfect, then it shouldn’t be done. We can’t let perfect be the enemy of the good when it comes to how we can best utilize an existing workforce, especially if we’re appropriately triaging the areas where we’re weaker. We’re always doing that and cross referring.
So as long as the sign posting exists and we’re not suddenly reaching into areas in which we’re incompetent, then for me it’s something that the heart of functional rehab can still stand.
Question 2: Do the speakers feel that there’s potentially a role for the case management in these situations about pulling the resources together coordinating that care and getting the right care in?
Answer: Very conscious to sound too cynical really but unfortunately it’s something that absolutely, in practice, that is the way to do it.
I’m just concerned, again, that if we’ve not moved forward with that comprehension of what each of the workforces could bring and we’re still doubling down on more narrow skill sets then, I don’t know how likely it is. It doesn’t stop it being then something that we should still continue to push for so we can sleep well at night, but I just think that that the breakthrough would come from a understanding of where the unifying aspects of cross professions would be, so that we can then make some progress on the coordinated efforts. I think that what I’ve noticed in the chat a little as well is that, the fact that the model seems to be let’s try and have some best practice examples that can crop up locally and then cross our fingers that they then get replicated.
It’s something that compared to the rest of this national COVID strategy, or lack of, is something that, therefore, you get this mix-up between some best practice examples that might be occurring well, including some recruitment examples of works in local trusts or local areas, but the way in which they can’t necessarily replicate rapidly is in part because of the top-down funding that, for good reason, became the staple because of the urgent needs of the country.
So you end up in this situation where, unless there’s a persuasion of those in influence to actually move in line with what we’re describing and coordinating in the case management approach that you’re describing, then unfortunately I think we end up just closing theory and then not enacting it.
Question 3: If you were a Commissioner or Manager tasked with addressing your community’s needs around COVID rehabilitation, what would the steps that you would be taking?
Answer: Instead of having a workforce that is then being considered for redeployment as close to their existing role as possible, or within a professional cliche of the fact that they once owned a stethoscope, which is what we’ve kind of found, is that you then had to look at the workforce and delineated it by the profession, of which you’ve got incredible variety in each, especially in the Allied Health Professionals. There’s been some assumptions that are made and that’s where some of the mistakes have occurred, either on redeployment or in restructuring it’s been leaning into stereotypes or even misconceptions, instead of the identity, as I described It, as being that this commonality across the professions I mentioned before.
But even outside of MSK, you’ve got all the other professions that overlap significantly. So instead of thinking about it under professional guises and cliches and what they were once taught at university many years ago, instead if you think about what the heart of the care delivery mechanism might be as I mentioned in MSK advocated functional scaled graded individualized rehab. Then if we did that, and we then replicated that across other areas, then for me you build policy around that. You put some parameters around what that service may or may not do and then you’re trying to stop any professional tribalism taking hold, you create policies and parameters of what this service is doing and have confident clinicians working within those parameters.
And I would say you distribute that virtually, you do community services, you try and get people and keep people out of hospital, in the COVID safe manners in which we’re all going about clinical practice now. You deal in and involve other resources, be that ladies centres, be that private clinics, independent sector and third sector charity organisations have been incredibly enthused by what we’re doing with rehybrid groups.
But again we were guilty of being all talk. Just what are we? We’re a very small and relatively young think tank that we’re then holding ideas, when actually we were all crossing our fingers that the powers that be listened, and yeah we didn’t win that argument.
Question 4: How can we get patients and public more involved in these services?
Answer: I feel very passionately about co-production. What’s interesting about when I speak as a Director of MSKReform, we’re very much across all interested parties, including patients, carers, other non-professionals within other industries that care about MSK reform and practice within it.
I agree whole heartily with what Emma has said, but also flying a few points of interest where, there are certain circumstances where patient involvement and engagement, especially in infrastructure and hierarchy within trusts and organisations where it had made some progress. And then there are areas where the involvement of patient voice narrative, and especially in governance structures. Unfortunately when COVID struck it highlighted this tokenistic approach to things when I heard of three examples in which patient directors and paid patient advocates ,who were leading on networks within organisations, were actually suggested that their organisation were trying to look into whether they could furlough at the time. It was this notion that this is serious work, and therefore this play thing that we did where we’re involving that side of things is suddenly being superseded by important stuff. And it just, for me, highlighted the way in which we need to make sure that these things are done properly and not just paid lip service to.
And so I have nothing further to add in terms of how. But certainly when, for me, it would be to not pay notice that it’s happening, but also follow through and make sure that these voices are, not just giving parity, but also the priority, where appropriate for us, to make sure that we’re understanding the circumstances that surround the way that this is affecting them often their health and also the secretly mental health and social factors.
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