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Seeing the wood for the trees: Quality Improvement and Long COVID

9 February 2022 | Alexandra Hellyer
Improvement Advisor for UCLPartners, Alexandra Hellyer reflects on how a Quality Improvement (QI) approach could have helped her to deal with the uncertainty of suffering from Long COVID.

Twenty months after contracting COVID-19, I now for the most part resemble the person I was before March 2020. Despite having what were considered mild symptoms, I endured a prolonged illness which floored me for many months with a condition now known as Long COVID. Having led a healthy and active life, I was suddenly faced with a novel and complex issue which I needed to unpick and solve.

I have worked in quality improvement (QI) roles for 6 years and currently spend my working days supporting teams with QI projects and leading improvement programmes. Quality improvement, as referenced by Dr Amar Shah, is defined as ‘a systematic and applied approach to solving a complex issue, through testing and learning, measuring as you go, and deeply involving those closest to the issue in the improvement process.’

Tackling a complex problem

I know from working in QI that it is never easy. It is used for sticky and complex problems with no known solution (though there seems to always be the unwavering human hope that there will be a silver bullet solution for every one of these problems). Nonetheless, when it came to my situation, this potentially relevant and useful knowledge was cast aside in favour of a ‘throw everything and the kitchen sink at it’ approach.

QI is never easy. It is used for sticky and complex problems with no known solution…

In desperation during my recovery effort, I tried everything and anything (almost) as soon as it was suggested to me. With no trips abroad allowed, our wedding postponed and no energy to flat hunt, I ploughed my funds into supplements, private health care, prescriptions, alternative therapies, apps, online groups, and trips to breathe in sea air. Something worked, or rather some things worked, or maybe it was just time and rest, but I will never really know. There was no eureka moment. With no definitive cure or guidance, rather than trying one intervention at a time and observing what happened, I did everything. All together. As a result, I found myself continuing to buy these supplements, whilst attending acupuncture, Chinese medicine, and private medical appointments, doing physio exercises, attempting a low-histamine diet and more, unsure of what (if anything) was making a difference.

Not only was this an issue for my bank balance and potentially a waste of my time and very limited energy, it also made me unable to help others. My symptoms and illness were never questioned or doubted by my family or work, but for others experiencing Long COVID that was not the case, and it took time for them to come forward with their disabling symptoms. Having been quite open with what I was experiencing, I was being put in touch with friends of friends as fellow ‘long haulers’ seeking support, shared experiences and guidance but was unable to share what had really worked for me. This was the first flag to me that I had failed miserably in applying what I work with teams on every day: a QI approach.

Measuring change

Measuring change was also overwhelming and patchy at best. This was in the early days of COVID, when tools such as the Living with COVID recovery app to help people measure and manage their Long COVID symptoms had not yet been developed. As a result, and perhaps unsurprisingly, I did not collect baseline data and seemed to lose touch with the person I had been before getting ill. Headaches, colds, congestion, fatigue, nausea, dizziness, restless nights, night sweats, fast heart rates, forgetfulness, brain fog, digestive issues, reflux, anxiety, depressed mood, lack of motivation and breathlessness, occur on occasion outside Long COVID often for reasons outside our control. This was not an illness I could entirely unpick from my broader self.

Measuring everything was not the answer. I needed to measure what mattered to me.

I was encouraged by clinicians to measure my energy levels, mood, headaches, and other symptoms which proved time consuming, overwhelming and which I struggled to maintain. It was not until I got pragmatic about it, enlisted the support and time of family as well as proper psychological support that I managed to do this and regain some control and focus. And so, more breakthroughs that I should have known having worked in QI. It might have ultimately been my issue to solve, but I did not have to tackle it by myself. Friends, family, and colleagues could all input along the way. In fact, they were already engaged and interested, I had just had my head down and blinkers on. Measuring everything was also not the answer, I needed to measure what really mattered to me in a way that I would be able to sustain and what is more, it did not need to be just my responsibility. Focussing on what I wanted to achieve most (or what symptoms were most debilitating) and letting others get involved motivated me to move forward.

Taking a step back

Hindsight is a wonderful thing, and it is amazing how quickly we launch into applying changes before giving it a second thought, particularly when tired, desperate, and stressed. Like most people, my desire for action and quick results overtook my more rational judgement. When overwhelmed, it becomes even more difficult to take a step back, look at the bigger picture and take a pragmatic approach where we test and observe results before trying the next thing.

Even when knee deep in your quest, it is worth remembering that it is never too late to apply QI tools and techniques. For instance, I was somewhat systematic in stopping treatments and supplements, rather than throwing them all out at once. I just hope that when faced with complex and seemingly insurmountable challenges in future, I remember the Institute for Healthcare Improvement (and the UCLPartners Quality Improvement team) might just be able to give me the tools to be more systematic, organise my thoughts, and help others, whilst saving me time, angst, and money.

Find out more about UCLPartners Quality Improvement training

This blog was originally published by Q Community