Planning for our patients
I set out to write a daily blog. I managed 3 days and that was with a missed day. Two people commented on the missed day — my mum and Kirsty (who is in charge of the UKRI Future Leaders Fellowship scheme).
At the end of day 2 I said …For the next couple of months at least I will “refocus and prioritise a leadership role locally, nationally and internationally.”
And so it was. And every hour has been consumed by producing urgent strategy and procedure. We know that there are approximately 520,000 people living with Crohn’s disease or ulcerative colitis in the UK today. That is … a LOT. Many are well — in deep remission — and on no therapy. Many, are in deep remission but on medications that suppress the immune system. And unfortunately many are in some form of flare state. All of this can change over time, often in the most unpredictable manner. Flares can lead to the need for steroids, urgent admission to hospital and major surgery.
We need to think about all of these issues in the context of COVID-19 … and largely in the absence of any hard data. Remember this is a novel virus — we know it behaves differently … but how and when? So there are many questions to consider.
The hospital systems are in a state of massive reorganisation. In some places it is everyone to the frontline. But what about the 520,000? Who will look after them? How do we protect our patients from this virus and continue to provide the best care possible?
We know that we need to keep medications going. This often requires visits to the hospital for infusions. Stopping these will often lead to the flares we need to avoid. We need to avoid people coming to hospital just when the pandemic is at its worst.
With this in mind, this week I convened a pan-UK working group of IBD centres. We did it over WhatsApp. Now over 70 participants are sharing data, expertise, best practice and knowledge. In a short period of time we have created a consensus document to share to all gastroenterology teams across the UK. This is of course to be shared internationally but right now we need something specific to the challenges in the UK. Right now (8:40 pm Thursday) it is with the BSG executive and we hope to distribute tomorrow pm.
Meantime we have already drawn up the top 10 things we want to share with people living with IBD. This went live via Twitter at 1pm today and has been shared widely. We are here to help and keep you safe. We will do our very best.
Is this the return of a daily blog? Perhaps … just don’t call me out on my counting.
Sleep tight and stay safe people. It is time to call the 9pm curfew on the WhatsApp chat … we all need to rest.