24 June 2020
During the pandemic we’ve spoken to a variety of members about how their experience of COVID-19 has changed their working lives. In this final blog in our series, we spoke to Dr Vinay Shivamurthy and Dr Nick Wilkinson, consultant paediatric rheumatologists at Evelina London Children’s Hospital. The team at Evelina were the first to discover PIMS-TS, the COVID-19 linked syndrome affecting children.
Dr Shivamurthy: “The paediatric and adolescent rheumatology service at Evelina has been around for six years now and has grown rapidly. We cover the 8 million population of South London and the South East, and have built up quite a population with high rates of referral of arthritis, lupus, JDM, vasculitis and intriguing cases of a tertiary unit. We also run a large multidisciplinary chronic pain service, again with a high volume and complexity.”
Dr Wilkinson: “Before the pandemic we were already tuned in to virtual working. We ran a virtual ward round, a virtual biologics clinic, remote coaching and we have a tremendous amount of activity delivered remotely by our nurses using teleconference, email and texts. This is alongside our support of a network of paediatricians, nurses and physios across local centres. So when lockdown happened we had lots of ways to reach our patients.”
Dr Shivamurthy: “In early March, as the COVID-19 crisis hit, we were asked to prioritise what we could offer to patients and we started seeing only the urgent and emergency cases face-to-face, with all non-urgent cases via virtual consult. Many of the team were redeployed, shielding, or had recently moved on, so it’s been a challenge.
“In anticipation of an impact into the hospital, Nick and I were put onto a rota to support the other services as well as rheumatology. So, we adapted to running the rheumatology service between us, one week on and one week off; working more from home during the ‘off week’ with virtual activities and supporting the team in other ways.
“Alongside this our colleagues Chitra, Kathryn and Nadia (Drs Sundaramoorthy, Shepherd and Rafiq), who have had to work from home, have done an amazing job organising and delivering the virtual clinics to keep our service running. Kathryn, one of our junior fellows, even managed to do this from Australia where she had to get back to before lockdown.
“The therapy team too have been stretched by redeployment but still managed to reorganise their bulging waiting lists and found new ways to support patients remotely. It’s been incredible what they have done especially with many of our patients with chronic pain. Even just checking in on patients has been valuable; given our large caseload it’s been important to us to still be able to keep in contact with our vulnerable if not urgent patients.”
Dr Wilkinson: “During a weekend in April the landscape changed dramatically, and we started to see this strange phenomenon in children. Out of the blue we had four cases that we just couldn’t explain – school-aged children with an unusual level of inflammation and shock but no respiratory symptoms. Then one developed large coronary aneurysms and we started to ask others across Evelina and other services in London what they were seeing.”
Dr Shivamurthy: “While we were still trying to grapple with what we were seeing, we saw a big surge. We were treating up to 20 children per week, often requiring intensive care, and we learnt we were bearing the brunt of the cases not just in the country, but probably across the world, and with our colleagues in intensive care, infectious disease and cardiology were integral in describing the condition. In the first few cases, it was unclear what was happening, but patients were very sick. Then a national alert was sent out and it had a huge impact across Evelina.
“Rheumatology had a very active role in what is now known as PIMS-TS, the COVID-19 linked syndrome affecting children. As numbers of patients grew, all the services had to be restructured to deal with this.”
Dr Wilkinson: “For six weeks we were flat out - no days off. The patients with PIMS-TS obviously needed a lot of time and there was lots of reading to guide treatments and pathways. The more typical face-to-face activity was fitted in at other times; ward reviews, infusions, new admissions, some with quite complex psychosocial concerns, and of course urgent reviews of those unwell with their lupus, arthritis or vasculitis. Fortunately, COVID had not itself affected our population other than one or two cases.”
Dr Shivamurthy: “There was so much evolution happening at Evelina we had to work fast. Whilst it’s calmed down a little bit now compared to what it was six weeks ago, it’s a changing landscape and it’s challenging.
“Even on a very rare day off, there’s always the temptation to log in and check in. On the days I’m not on service I’m trying to work from home so I can save time on my commute and try and get out and see the sunshine.”
Dr Wilkinson: “Now we’re into recovery planning. We’re looking at what infrastructure we need and how we can create the right face-to-face space. In clinic we have a patient in each room and can drop in on them quickly, seeing 12 patients in a morning, although new Trust guidelines to accommodate social distancing may bring this down to four.
“In paediatrics so much of MSK is about the physical examination. We can’t rely on tender joints in the same way that adults do. Our kids don’t get tender or necessarily stiff joints, but often subtle restriction can be picked up from examination. Our plans have to adjust and react to what the hospital is thinking.”
Dr Shivamurthy: “We are expecting that as things quieten, we’ll see more patients coming in who have perhaps delayed getting help or have been hesitant to use public transport. We now expect patients to feel more comfortable about getting in touch with us and coming to see us.”
Dr Wilkinson: “We’ll get there. Like all new services growth in referrals have easily outstripped staffing and that remains a challenge. Benchmarked against other paediatric and adolescent rheumatology and pain services we have a very high rate of new cases, but we’re pretty good at adapting and working with our network. Our patients are very adaptable too.”
Thank you to Dr Shivamurthy and Dr Wilkinson for sharing their experiences so candidly, and a huge thanks also to all of the members who have given up their time to talk to us about their work during COVID-19. We look forward to hearing from more of our members later in the year about how services continue to be adapted.