Connect Health “Change” brings you the latest 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.
Long COVID is the colloquial name given to persistent symptoms following COVID-19 infection. Most people recover from COVID-19 in a few weeks. However, some people continue to experience continuous, relapsing or recurring symptoms for months after contracting the virus.
The evidence to effectively support people living with Long COVID symptoms is still emerging, particularly about managing fatigue, breathlessness and muscle pain. This webinar aimed to provide an update on the latest expert opinion and evidence base. The panel will set out the key challenges and priorities for providing the personalised care and the pathways required.
Delegate feedback included:
- Expertise, range and experience of speakers – Expert advice and information given and sign posting.
- Case study from Razia – personal experience of Long COVID was very moving.
- Research based but also experience based advice, the speakers had practical examples and lived experiences
- Good delivery, relevant subject, very well covered, lasted right amount of time, speakers were responsive to questions in chat.
- Now aware of the huge impact Patients with Long COVID have been having to endure etc. Multiple and complex needs of these Patients, overwhelming New and evolving services with ongoing research
- Very informative in good bitesized chunks – presentations short, precise, well presented, good pace and well delivered
- The use of every day terminology rather than medical language.
- It shows that there is a real effort to address the needs of people with Long COVID
Watch the Webinar in Full
Dr Ian Bernstein, Director of Medical Education, Central London Community Healthcare NHS Trust, MSK Physician Connect Health
Rachael Moses OBE, Consultant Respiratory Physiotherapist, President-Elect, British Thoracic Society
Question 1: Rachael, you mentioned that exercise is not recommended for those suffering from Long COVID symptoms that have post exertional symptom exacerbation could you explain this a little more please?
Answer: That’s a huge question in a short time to answer but in a nutshell, as healthcare professionals, we will always encourage people to be as active as we possibly can because we know inactivity is detrimental and dangerous. However, if someone has significant symptoms following a viral illness and post-exertional symptom exacerbation is present, they may do activities and they’re absolutely flawed for hours/days/months afterwards.
We know from other conditions such as the ME/CFS community that graded exercise therapy for this patient population can also be detrimental and dangerous, therefore if someone has post-exertional symptom exacerbation then they need to have a thorough assessment. They need to potentially have a fatigue management plan, a fatigue diary and energy conservation strategies as well as an activity planner. This might include heart rate monitors, dietary advice, sleep hygiene, all of these really basic things that we tend to sometimes forget. We go straight to the other end and a blanket exercise provision is not helpful so I would signpost to the websites below:
• https://www.longcovid.org/ This website has excellent resources and peer support
• Long COVID Physios, Long COVID SOS, Long COVID Kids, Physios for ME, Physios for breathing pattern disorder, Royal colleague of OTs
Question 2: There was an item in the news that one real outcome of COVID infection in people who were healthy prior to the infection is new onset diabetes – do you have any information about this and cognitive decline in men?
Answer: There is a link but the causative link is ensuring it could be related to some of the ongoing viral persistence and the inflammatory response that we see. I think there’s so much unknown here but it’s likely to be autoimmune mediated and I think we need to watch this space.
Question 3: Do people tend to continue SPo2 drops when mobilising with Long COVID Rachael?
Answer: It really depends. People shouldn’t really be desaturating on exercise significantly so I would want to know they had a full respiratory assessment excluding other causes. Some people find pulse oximetry helpful to help pace and use HR monitors/watches as well.
Question 4: Do you think physios could join forces with SLT re dysfunctional breathing and what would this look like?
Answer: They already do in many services. Manchester, Preston, Birmingham, Newcastle, London. Complex breathlessness multi-disciplinary teams are often led by SLTs as the upper airway diagnostics are crucial.
Question 5: I’m seeing quite a lot of people with dysfunctional breathing where we wouldn’t necessarily see an abnormality on physiological testing and I just wondered how common that is, how you might detect it?
Answer: This is a whole seminar in itself but dysfunctional breathing generally is caused by over breathing or breathing in a way of breathing more than we need to and it’s caused by a number of factors. It’s an umbrella and there are specialists that can help manage this but why is there a link with dysfunctional breathing and Long COVID? Probably, my personal opinion because fatigue is highly prevalent, because ongoing symptoms of breathlessness and there may be a pathophysiological cause of that but also because of deconditioning coupled with everything that comes with that, so social isolation. I don’t want to focus on anxiety because a lot of clinicians can sometimes say this patient’s anxious and that’s not necessarily true, but there is a psychological element to this and this is why breathing pattern retraining is really important. Physios can treat this completely.
Question 6: What about increasing muscle bulk by body building instead of frustrated running in a 20 yr female with weakness and joint pain after having COVID 6 months ago?
Answer: So, as always it’s very difficult to answer and give personal advice without assessing someone but the easy answer to that is no probably not. How do I know that because we have been seeing a lot of people with long COVID and persistent symptoms who are very fit and healthy marathon runners, for example, who have tried to introduce exercise back into their daily routine and crashed and burned. So the real advice is you just have to stop, you have to rest, you have to introduce activities and know your limitations. Fatigue diaries are really good for this, activity diaries and introduce things gradually into your day and combined with the cognitive tasks we spoke about and then slowly you will get on the road to recovery. The great news is that at 12 months, most people with long COVID will start to see a near or full recovery but you do just have to be patient and really give yourself time to recover in nutrition, sleep etc.
Question 7: How do we design services for younger people to encourage vaccine uptake and reduce the risk of developing long COVID?
Answer: Long COVID kids is an organisation that was set up and co-founded by a mum who has suffered Long COVID and her child so they are now a charity and they are part of the NHS England working groups looking at the 14 soon to be 15 paediatric Long COVID clinic hubs we have across England. So how can we design these services to meet the needs of children? Well, first of all, it’s slightly different because children will have to have their parents there, their parents are their caregivers, sometimes other siblings are actually the caregivers if the parents also have Long COVID, and we need to take education into this as well as social isolation. Digital platforms are again challenging for children and young people for governance and for things like safeguarding, so even virtual we’ve seen being used a lot in adult services but there are slight limitations and differences there. I think it’s speaking to the organisations that exist, the patient support groups within your locality. Vaccine uptake, I think there’s been some incredible work being done within local communities, with religious leaders, with locals, youth support workers etc. and of course social media and getting the right messages out there.
Dr James Hull, Consultant respiratory physician, Royal Brompton Hospital
Question 1: In your opinion, what is the biggest challenge in helping people with breathing issues in Long COVID?
Answer: To be so transformative in terms of helping people understand breathlessness, the reality for me is simply trying to get people through logical, simple frontline investigation and then getting patients to the right type of expert to help them and by that, largely I mean people like respiratory physiotherapists, OTs and others who really understand how to help people with breathlessness. There’s no type of expert right across the NHS and so we need to be able to marry those two things together and ask the players and the organisation to try to organise and streamline that participation.
Question 2: I’m seeing quite a lot of people with dysfunctional breathing where we wouldn’t necessarily see an abnormality on physiological testing and I just wondered how common that is, how you might detect it?
Answer: It’s incredibly prevalent because typically people refer me patients where they’ve had lots of tests completed already and they’re still not able to explain the symptoms but I see it as the number one cause for ongoing unexplained or disproportionate respiratory in this context.
Question 3: What about long term myocarditis (I mean post COVID) is VitC, probiotic, VitD, selenium helpful in post COVID?
Answer: The data and the information we have is obviously still evolving as to how to best manage this. I would say if an individual has confirmed myocarditis, i.e. inflammation of the heart muscle, they need to be under the care of cardiologists for that potentially very significant serious complication of behaviours and very sadly in some occasions it can be associated with some very rapid heart rates and collapses. I would suggest that yes there may be a place for additional therapies such as vitamin therapies and supplements that you’ve talked about but please only under the guidance of a cardiologist.
Razia Bhatti-Ali, Consultant Clinical Psychologist, Connect Health Pain Services – Living with long Covid
Question 1: In retrospect what may have helped you in your recovery, what could you have done better?
Answer: I think it would have helped if I had talked to people a lot more than I did and shared my symptoms and I would have seen that other people with Long COVID were experiencing similar symptoms. I think I was quite hard on myself with this belief that I’m a healthy person, I shouldn’t be feeling like this and that’s where I think the self-compassion helped. When I started to be kind to myself and say look this is an unknown entity, it’s something that I’m going to have to work through and I need to talk to people about it that’s when I started to share my feelings a lot more and also my faith really helped me. My faith is very strong so I was using a lot of prayer and gratitude. I also was making sure that I was looking after my body and resting as much as I needed to, pacing myself doing things in a way that was more holistic and helpful for my own body, mind and spirit.
Honestly, it was more the psychological knowledge I had, using my own psychological skills to apply on myself. I was practicing what I preach and using the techniques I’ve learned from various therapies. I did get the opportunity to attend lots of webinars because there was a lot of free webinars about looking after the body post COVID at the time.
Question 2: You mentioned something about feeling that you’d heard that other people mentioned that they weren’t validated, tell us a little bit more about that and what we can do as a clinical community to counter that.
Answer: I think a lot of people might be confused as experiencing anxiety which is a big part of being ill and especially if you’ve never experienced something like this, anxiety is going to be really prominent. A lot of people were saying that people weren’t taking their symptoms seriously and telling them they you should be over it. I think with the chronic pain patients I work with, because they already have existing health conditions, anything additional that they were telling people was received with ‘you just need to work through it, it’s just a virus, you’ll be fine’. I think this was partly because there wasn’t enough information about Long COVID, it was an emerging concept and that’s why people were probably not really being taken seriously.
Question 3: What about long term myocarditis (I mean post COVID) is VitC, probiotic, VitD, selenium helpful in post COVID?
Answer: Because I didn’t actually have any problems with tachycardia or any sort of complications in that sense I did increase my supplements with vitamin C, vitamin D and I always like have taken probiotics anyway but I wouldn’t advise anybody taking anything without medical advice just in case they do have other issues that these vitamins or extra supplements might interact with but for me it did help. It helped boost my immune system.
Steve Tolan, Allied Health Professions Lead for London Region, NHS England
Question 1: What are the biggest challenges for operational delivery of these services at scale over the next 12-24 months?
Answer: So, for me it’s around workforce capability and capacity and it’s not just about whether you have enough money, it’s whether you have enough people to deliver these. Now the opportunity is to use some ingenuity and think about wider workforce community assets and patient groups and think about best use of digital resources as well, but the key issue is we’re not going to be able to grow some of the traditional workforce groups quick enough to keep up with demand, not just from this but some of the very many things that the NHS needs to do.
Question 2: What sort of initial tests might be indicated, maybe in a primary care setting or an assessment setting and I wondered if you wanted to signpost to any national resources, any learning resources?
Answer: So there’s some outlined in the national commissioning guidance. What I can say is in the region, what we’ve tried to do to make life easier for general practice, understanding all these competing demands and build electronic health record templates that guide people around the expected and diagnostic tests and tools that they might want to use. I think it is important that we show some kindness and generosity to general practice and make life as easy as we can for them because they actually are experiencing a huge number of competing priorities and pressures.
Question 3: How do we design services for younger people to encourage vaccine uptake and reduce the risk of developing long COVID?
Answer: In London we have a virtual MDT made up from professionals from across the Trusts, the principle is trying to support children and their families as close to home as possible. So it’s trying to support people with their local clinicians partly because they need to be able to access their local treatment services and there are multidisciplinary teams. One of the challenges that we have to recognise is for children, young people, the prevalence seems to be much less than in adults and that creates challenges because if you are, say, a general practitioner it’s likely you’re only going to see very few of them so that’s part of the education piece. In terms of vaccination it’s just important to understand that the decision maker are parents and we’ve got to make sure that we’re using shared decision making. I think what we’ve seen for the most part is making people do stuff doesn’t provide a beneficial impact.
Karen Bradbury, Regional Clinical Lead, Connect Health Pain Services
Question 1: How are you going to evaluate the services? How will we know if this is really helping beyond the natural recovery rate that we might see in some people?
Answer: So we’re using a range of outcome measures, looking at the things like the Chalder Fatigue Scale, EQ5D, and patient feedback, and we’re looking at the PSEQ for pain scores which are appropriate if patients have pain, but I think it’s really the patient feedback, how are they, what are they gaining from the course, how is that impacting their lives, how are they feeling.
Question 2: Is there any component of occupational rehab in this program if not where would you signpost people?
When we’re looking at putting together a management plan, when we’re looking at values, when we’re looking at goals, that’s where we would put in the occupational rehab as well. We’re hoping that we will also be able to offer some guidance to employers as well, that’s going to be another huge issue going forward.
Question 3: Are Occupational Health physios being included in the program for the work support?
Answer: So, on our service we do have some occupational health contracts and we do have occupational physios and they have also had access and been trained in delivering the program so that will support people in certain areas and, more widely, we’d be very keen to be involved with occupational health providers as well. I think it’s all around education and guidance and understanding what a phased return is and certainly it’s not the usual three days, even three weeks, it’s more like three months. I think the other thing as well is the sick pay, the conditions which really are forcing a lot of people back into the workplace who really shouldn’t be going back. That’s a wider issue, I think for the DWP that’s going to hit in the long term and something that will need to be addressed.
Question 4: When is the Connect Health long COVID program starting and how can patients get referred – is it being run Nationally?
Answer: So currently it’s not being run nationally, we’re starting in the north west area and referrals come in to us from the long COVID service in secondary care and we’ve got other services, one in London which has gone live and we’ve other areas up around the country . We’re having a lot of people coming to us to see how we can deliver it and we have the chronic pain self-management service running nationally.
All speakers – What is the one thing you would change to improve outcomes for people with Long COVID?
- Rachael – all clinicians please believe their symptoms whatever they are
- James – don’t expect people to just continue to recover in some progressive, gradual pattern and expect the unexpected in terms of setbacks in the recovery with this condition is my experience
- Razia – please validate people when they do offer a range of symptoms and everybody isn’t the same, people have different symptoms and to believe them and not give them the name of anxiety or depression
- Steve – if you’re seeing patients with long COVID please do think about who you’re not seeing and have a commitment to inequalities
- Karen – validate the experience, empower patients to self-manage and continue with that support
Watch the webinar again, which includes further insight from the speakers including a full Q&A session, and read more about the speakers here: