Opinion: We're All a Little Vulnerable Right Now
I've been reflecting on the surreal events of the past couple of weeks, and how they're impacting our PSC community, particularly here in the UK:
Some of us have been advised in no uncertain terms to shield, that is, isolate ourselves and not leave our homes because we are at high risk of having serious COVID-19 if infected. Food boxes are arriving, and delivery slots are starting to open up as supermarkets cross-reference shoppers against the government’s ‘extremely vulnerable’ list. As with any mammoth task rolled out in a matter of days, there have been teething problems but those efforts are now beginning to bear fruit (quite literally).
Shielding is not a walk in the park (it is definitely not that). It comes with financial implications, and challenges as other household members try to accommodate the new protective measures, yet need to continue working. Partners are temporarily separating, and parents are having to make hard decisions about living arrangements for their children. We’re staying inside on beautiful days like today, and it’s hard, but its a small price to pay in our efforts to beat COVID-19.
What about those of us who are vulnerable, but do not quite meet the extremely vulnerable criteria? We’ve been told we are at risk of severe COVID-19, but have then been left to our own devices. For some, it is not even clear which category of vulnerable we’re in, and so many people with PSC are choosing to shield anyway, but with zero additional support. Or we’re continuing to work and struggling to make employers understand concerns about risks of infection without “The Letter” informing extremely vulnerable people about the risks.
Since the start of COVID-19, our helpline has never been busier, and our Facebook group has never seen so many people trying to make sense of a single topic. It’s challenging to manage the helpline and moderate the forum. Initially there was a great deal of confusion and misinformation in the public domain, and it has been a full time job to keep up with developments and activity to ensure people with PSC have the right information in an easy to consume format. We were grateful for our new additional volunteer moderators, helping us manage a support a group of 2.6K members.
Additionally, it became clear that as A&Es were predicted to become overwhelmed with very ill patients, we had a problem brewing for people with PSC. PSC Support estimates that over half of us get at least one cholangitis attack in any one year, and we’ve written clear guidance on how to spot it and get the right care. Often, the first port of call is to A&E, the very place that will be super busy and a hotbed for COVID-19 infection in the coming weeks and months. As soon as we realised the impact that COVID-19 would have on the NHS, we acted quickly and worked with UK-PSC doctors, our PSC Support Expert Panel and GPs to devise a plan to help people with PSC be as prepared as possible, and have a way to get treatment quickly when acute cholangitis is suspected. I’m still worried about this. The plan depends on knowing what acute cholangitis looks like, and that’s not easy, even for experts. Being educated and informed about acute cholangitis is more important than ever if we are to protect both PSC patients and our NHS as it operates well beyond capacity.
There are day to day issues to be ironed out, such as the delivery of additional healthcare by GP practices, and how hospitals will manage non-COVID-19 patients who need important specialist care or procedures. The routine care and monitoring of patients with PSC is on my mind. For years, I’ve banged the PSC drum at every opportunity and written PSC information that revolves around helping patients get the right care at the right time. But what happens now? Our care is going to look different this year. We’ll see reduced ‘routine’ hospital services while hospitals (understandably) manage the influx of critically ill COVID-19 patients, and only patients with the most urgent needs will attend hospitals.
One positive is that suddenly more hospitals have been forced to conduct telemedicine. And it’s really working. PSC Support funded the development of the UK’s first virtual PSC clinics, and they’re perfect for routine check-ins when you don’t need physical tests. I hope access to this kind of virtual care develops even further after COVID-19, and that we can access more local services under the supervision of our PSC specialists. In the meantime, it’s important to keep PSC on everyone’s radar, to ensure we are not overlooked as doctors manage healthcare for many patients with little resource.
Talking of ‘after COVID-19’, when will it end? Yesterday, at the daily government briefing, a reporter asked Michael Gove what the planned exit strategy for COVID-19 was. The answer was that there isn’t one; we are still learning about this virus. It got me thinking. It’s not just a national issue; it is a global one. What does ‘after COVID-19’ look like to vulnerable people? It will end for us when there is an effective vaccine or treatment that we can all take, and not necessarily when governments announce we can go out and mix with people again (because there is capacity to treat enough people again in hospitals).
The UK is leading the way in COVID-19 research as it is running the world’s largest randomised clinical trial of potential coronavirus treatments. This is not surprising. Did you know that the UK recruited more patients for commercial PSC clinical trials than any other country in Europe in the last 5 years? This is partly a reflection of how informed and engaged people with PSC are in the UK, the UK-PSC registry of over two thousand PSC patients, and the fact that the UK’s clinicians, researchers and research facilities are among the best in the world.
Promising medicines that might help beat COVID-19 are being tested right here in the UK. This is good news for anyone who is vulnerable, because if the results are positive, it means the virus will be controlled, and importantly, if we do become infected, can be treated quickly.
We’re all feeling a little vulnerable right now, but none more so than key workers and healthcare professionals. Every day, they’re getting up and going to work, many having been retrained to provide emergency respiratory care, risking their own lives to help people with COVID-19. When #ClapForCarers was announced on social media, I admit, I was a little sceptical about the appetite of the average British person to stand on their door step and clap loudly. As I stood on my doorstep in Didcot (officially named the most normal town in the UK) that first Thursday night, the cheers and clapping were overwhelming. I felt proud to be supporting our NHS and key workers who are trying so hard to keep us well and fight COVID-19. I felt a little less vulnerable, and a little more part of a bigger community that can and will get through this.
Right now, the “support” in PSC Support has never been a more important element of what we deliver.
Martine Walmsley, PSC Support Chair of Trustees
Sunday 5th April, 2020