A happy health story: can COVID-19 change long term care for the better?

Elly Aylwin-Foster | 18 June 2020

I think it is fair to say many of us could use a good health story right now.

For those of us who work in healthcare there are no shortage of difficult headlines to absorb, not least during a pandemic that - despite enormous progress in the scientific community - shows no sign of fading 6 months later. 

But, part of working in an industry that means improving health one endpoint at a time, means finding the victories to celebrate too.

Since I have begun working in healthcare, I’ve been immersed in the simple principle of ‘empowering patients with data’. Their own health data, that is. I’ve been involved in many inspiring conversations, read so much about the platforms poised to breakthrough into the mainstream health management space for what feels like years of anticipation and even been privileged to be a part of a team that worked to make such innovations a reality.

Those conversations have always had a bit of a disconnect for me on a personal level. I can feel abstract amazement when considering the impact that the marriage of wearables and a simple app to provide closed-loop biomarker monitoring, or more informed, regular communication between doctor and patient could provide in the context of so many long-term conditions. And yet, I never experienced such innovations in my own care.

Initiatives like flash glucose monitoring in type 1 diabetes, or remote monitoring of lung function through a handheld spirometer-app combination are not exactly ground-breaking technologies anymore. It is perhaps easy to forget how transformational they can be when they are (finally!) placed in the hands of a person living with a chronic, complex condition like type 1 diabetes or cystic fibrosis.

I can tell you first-hand; there will be no going back for me. Especially, not when the stakes felt so high. It has taken the complete interruption of my regular care in a way I could never have believed possible at the start of this year. My initial experience of being labelled ‘extremely clinically vulnerable’ wasn’t exactly pleasant, and I’d say that sensitivity in the way our health is discussed with all of us is vital, whether it’s a routine GP ‘chat’ on the topic of alcohol consumption, or someone’s statistical risk of danger in a fast-moving ARDS pandemic.

The first time I visited my clinic - after almost 3 months of dreading the thought of setting foot inside what was once one of the most familiar, safe, places for me in Cambridge - was an emotional rollercoaster. Seeing familiar staff members on-site in uniform scrubs, instead of their traditional attire felt almost raw. Trying to imagine what those last few weeks on the wards must have been like was hard. I felt like I was speaking to old friends who had gone through something I could never understand. Despite my initial concerns about how my own health might be affected during the lockdown, I had more or less accepted that I would have to ‘sit tight’ just like everyone else and hope for the best.

So you can imagine my surprise, when the CF team at Royal Papworth Hospital expressed their ambition to expand access to their remote monitoring pilot ‘Project breathe’ during COVID-19, to the entire patient cohort. By mid-May, I became the proud owner of a Fitbit, a handheld spirometer, a pulse-oximeter and a new pair of scales, together with the setup of the accompanying app to store and share all measurements with my very own specialist CF clinical team. I now have more actionable, contextual data about the condition I was born with 31 years ago, at the click of a button, than I’ve ever known.

I can now make decisions – together with my consultant – about which of my scheduled clinics I need to attend and which can be re-allocated to someone else with an urgent need, when I might need to start an unplanned course of oral or IV antibiotics with more than a mystical ‘it’s time’ finger-swish-to-the-wind, and I can have informed conversations about what any of these trends might mean, in the short, medium and long term experience of living with cystic fibrosis.

It’s the kind of knowledge I’ve dreamed about helping become a tangible reality in the lives of people living with so many conditions, and, in a broader sense, one of the biggest reasons why I am so proud to work at Cuttsy + Cuttsy. Finally, that knowledge is mine too.

Who would have thought it would take a pandemic to bring such progress?