It’s 11am on a Wednesday and a group of people are joining a Zoom call. Although mostly strangers to each other – at this point – they have certain things in common: all are doctors, and all have long COVID.
The group meeting has been organised by Doctors in Distress, a charity set up to help reduce suicides in the medical profession, which steps in where there is a specific need.
For the next 75 minutes (with a 10-minute break) doctors from a variety of clinical backgrounds and geographical locations share their experiences of long COVID – whether that be symptoms and their attempts to access medical care, or their feelings about how they came to contract COVID in the first place, and how supportive their employers had been; they did this for nine weekly sessions, and many of them still keep in touch.
Talking to others who are going through the same experience is helpfulDr Campbell
One of the participants in the call last Autumn was consultant rheumatologist Richard Campbell (see ‘Amongst peers’ below), who says it was particularly helpful to be able to discuss these things with people who understood where you were coming from – with fellow doctors who shared many of his experiences, and who spoke the same (medical) language.
‘Talking to others who are going through the same experience is helpful from a practical point of view, such as signposting for support, but also for emotional support,’ says Dr Campbell.
‘It is also helpful for validation. For example, we were all on sick leave together and we reassured each other that this was appropriate and sensible for ourselves and our patients.’
Build a rapport
The support group was the brainchild of Sarah Burns, a Southampton GP who contracted COVID-19 in March of last year – the virus left her with continuing symptoms and she has been diagnosed with myocarditis.
Seeking support and information about what was beginning to become known as long COVID, she became one of the original administrators of the Facebook UK Doctors #longcovid group. Although the group now has more than a thousand members, she and some others felt that they needed somewhere else to meet and discuss the issues they were facing.
‘The group grew really quickly, but although it’s a private group and we screen people as carefully as we can, and we require GMC numbers [from potential members] and try to make sure it’s only doctors, you can’t really have the same sort of free discussion or support that you can get away from social media.
'Around the end of August there were some doctors that were really struggling, so I decided to write to Clare Gerada [chair of Doctors in Distress and BMA council member] to ask if she could run a support group.
A sense of them being together and having some peer supportDr Warren
‘It’s basically a space where people can come together in a stable group (it’s the same people every week), so they get to know each other, and each other’s stories, and develop some rapport and deeper trust and understanding.’
Sue Warren, a GP, was one of the facilitators and describes the issues raised in the groups. ‘There was something about coming to terms with the illness, but also coming to terms with being a patient,’ she says.
‘People were also sharing symptoms. I think long COVID has lots of different manifestations and it’s not the same illness for everyone – some people might have myocarditis, and some people might have neurological symptoms. So it was about sharing information about what’s going on and also sharing resources.
‘That was important, but I think the sense of them being together and having some peer support, and having other doctors to talk to validated for them that they had an illness – and some were not getting that validation from the rest of the medical community because it was a new illness and people weren’t always very understanding.’
Participants were ‘icebreaking their way through a new illness while feeling ill’, adds Dr Warren. ‘That’s very difficult.’
This was certainly the case for Dr Burns, who was previously a salaried GP but is now a GP retainer, working three sessions a week clinically on top of a new non-clinical job. She had tried to go back to work too early then ‘crashed completely’ and had to take more time off.
She had to ‘advocate’ for herself to be referred for investigation into what turned out to be myocarditis, although she adds that her own GP was excellent and very understanding.
The support from the group was invaluable. ‘Sharing experiences and getting validation,’ she says, when asked what she found most useful.
‘Quite a few people had struggled with neurocognitive symptoms and fatigue, and I think we don’t really talk about that much as doctors.’
Doctors in Distress, which is funded by donations and other sources, including grants from BMA Giving, had 60 participants in the first cohort and a second cohort started early this year.
Dr Burns hopes that the initiative will continue if required. ‘I think the people who took part found it really useful – we all had a reason to be there,’ she says.
‘They were a really good space for reflection and for developing self-compassion, and that’s really important.’
Being able to discuss his illness with fellow doctors helped Richard Campbell find common experiences and feelings
Richard Campbell is a consultant rheumatologist with King’s College Hospital NHS Foundation Trust.
In October, The Doctor reported how he had developed COVID after working on the medical take, where many patients had the virus. Although he tried to go back to work, his symptoms persisted, leaving him off sick and extremely worried.
He heard about the Doctors in Distress support group via Facebook, and found it hugely helpful.
‘I have never been unwell before. Being an unwell doctor is a unique experience because some of my concerns are different from those of lay patients. Our work is not just a job, it’s also an identity and a career. My non-medical friends told me to “just take time off”, but it is not that simple as a doctor.’
Themes of guilt and responsibility came up a lot in the group, he says. ‘It was helpful to talk to others who understood that you need to be 100 per cent switched on as a doctor because we have to function at such a high level.’
‘Those taking part were all suffering with a new disease and all reported different presentations,’ Dr Campbell says.
‘The uncertainty that comes with having a new disease is frightening, especially as a doctor because we know the possible differential diagnoses for our symptoms and worry when we are not investigated in the way that we would if we were seeing the patient.
'I had persistent cognitive problems and headache which I found particularly concerning. I found it helpful to talk to others who spoke medical language and shared my concerns, rather than trying to reassure me, which is what some of the doctors looking after me tried to do.
‘They did so with the best intentions, but false reassurance is empty without supportive facts or data.’
The group facilitator was also a doctor who had experienced illness and understood the problems of being a patient who is also a doctor, says Dr Campbell, adding that the group was able to share experiences of accessing medical care and support.
‘We shared our frustrations about disjointed care and care that was not centrally coordinated. We also discussed financial concerns and whether or not our employers were being supportive.
‘We discussed whether we thought PPE had been adequate and whether we thought guidelines had been financially and operationally motivated rather than by applying common sense.
'For those who felt PPE had been inadequate, we explored whether not being properly protected against potentially high levels of viral exposure may have contributed to our terrible post-COVID experience.’
He has found the experience of being in a patient support group helpful.
‘I continue to keep in touch with those from the support group meetings. Some of these doctors continue to have more serious problems than I have and some are recovering. We continue to support one another. I feel like I know many of them, even though I have only met them digitally and not personally yet.
‘I am now recovering and the experience will inform my practice as a doctor. I have some residual symptoms, but am now back at work with some temporary adjustments; I expect to make a full recovery.’
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