Aiming at a ‘quality’ life

For the past forty years, I have tried to live a high quality, fulfilling life while managing multiple long-term health conditions.  Recently, with the help of improvement science, I have been able to independently and successfully manage each of my conditions.

My health conditions started in early childhood with a diagnosis of hay fever and asthma. During the course of my life, I developed a heart condition, and, around my mid-60’s, high blood pressure and non-alcoholic fatty liver disease (NAFLD). Following surgery to treat an enlarged prostate, I experienced complications and now have to self-catheterise.

In 2020, when the pandemic arrived, I was diagnosed with Type 2 diabetes – my seventh long term health condition.

As a patient leader in my community, I was aware that patient ‘self-management’ was starting to be encouraged. As a Q member, I felt confident of addressing this new issue as a quality improvement project.

Deciding what ‘quality’ means for you

Over the course of a career helping companies improve their operational processes I had introduced system improvement at scale, and quite often in challenging circumstances. Rather than just looking at processes and outcomes in a linear way, this work demanded a holistic, lateral perspective looking deeply into how each task in an organisation flows and performs.

Drawing on this experience, I knew I had to establish what ‘health and wellbeing quality’ means to me, because every person has their unique definition. I realised that most information in the public domain concerns population averages, and that individuals often vary widely from what may be described as normal.

As anyone who has ever tried to build a successful company can tell you, employee motivation and empowerment are key to high quality outcomes. When considering how to improve quality in an organisation, a  good place to start is to ask people what it is about their work that makes them proud. So I asked myself just what it is that gives me particular joy, and the answer was clear. When my conditions feel stable, I feel confident about being my best self in the company of others, and in trying new things. This is the foundation of my wellbeing.

Using the NHS England framework of Plan Do Study Act, I developed, built, tested and implemented a quality improvement method designed to stabilise my own mind-body system so that I could live as well as possible every day.

Vitally this gave me the platform I needed to treat any new lifestyle choices I wanted to make as a scientific experiment – and find out ‘for me’ what works and what doesn’t.

The importance of being evidence-based

The first step in any improvement process is to be able to answer the question ‘how will I know that any change I make equates to improvement?’  So I needed to gather evidence about my overall health in a way that would avoid unconsciously manipulating my own perception or interpretation of the unfolding outcomes.

Each day, I would make a simple set of qualitative and quantitative observations and record these on a spreadsheet for each health condition. Collecting data on a daily basis in this way helps to spot interdependencies, so recording needs to be set up to allow this.

Over time, the data revealed that my Type 2 diabetes, NAFLD and blood pressure conditions were all linked to a common denominator: my metabolic system. Even my congenital asthma turned out to be indirectly relieved by metabolic improvement.

Most importantly, I now have a statistically robust set of baseline metrics for my body as a whole system. This allows me to observe the impact of my interventions as they happen, beginning each new PDSA cycle with a fresh prediction, and with every cycle deepening my sense of systemic cause. The many insights gleaned have led to a very new and highly personalised set of behaviours.

Through the heightened understanding of how to sustain my homeostasis, I notice that I am motivated to watch carefully whenever I implement a change.  Currently I am exploring the benefits of eating fermented foods. Using PDSA, I am able to design and make experimental changes against my established baseline to see what difference each trial I conduct makes – how much and for how long.

Each of my conditions is tracked in this way using an XmR chart similar to that I once used to monitor business processes. This chart now powerfully gives me both a qualitative and quantitative overview of each of my health conditions, along with pointers for my overall wellbeing. I now think of this chart as my ‘self-control chart’.

Developing psychological resilience is key to self-care

At time of writing, all seven of my health conditions are currently under ‘statistical control’. I know this by continually interrogating the data that I am collecting every day.

My own blood pressure readings and blood sugar levels are consistently within a range that is normal for me.  Whenever my GP practice calls me to ask how I’m doing, I send them my self-collected data – visualised as a chart – to report that my Type 2 Diabetes, NAFLD and blood pressure are all in sustained remission.  Since taking this approach to self-care, my need to make use of NHS services such as GP appointments has become a rare rather than regular occurrence.

I monitor my asthma through daily peak flow readings (always before breakfast), recording the best of three tries.  From this data, I can see that even my breathing performance has improved – actually reversing a 20-year decline.

Observing in real time when systemic shifts occur in my health has made me more psychologically resilient and ever clearer about how to keep my mind-body system stabilised. I have learned that if I don’t take certain steps to maintain my health, it will likely deteriorate. I sometimes even feel in control enough to be able to predict just how long recovery is likely to take.

Becoming an expert on your own health

Having the tools to craft my own evidence-based story has been a game changer for me. In this new world the first opinion is my own – backed-up with sharable evidence that’s visualised over time – and the second opinion is the professional’s. It also makes it easier to work in partnership with health care professionals.

As a patient leader in North Somerset, I have had the opportunity to share my new way of thinking with other patients. Some have asked me to support them to use this approach to manage their own health conditions. I am practised at helping patients to set up a spreadsheet that makes it easier to collect the most telling data which can be instantly converted into an XmR chart to reveal systemic change over time. Whatever the condition, PDSA appears to be just as applicable.

In any health care setting, I now feel like the primary expert about my own health, empowered by information and evidence.

Quite apart from the enhanced feeling of self-control, I have more confidence that my safety is best assured.

Further reading

Below is a selection of articles I have published on this area:

Using P-D-S-A, patients can take control of their own health & wellbeing trajectories

Is Your Improvement Continu-ous Or Continu-al?

Intervening into Personal and Organisational Systems by Powerfully Leading and Wisely Managing

If you are interested in finding out more about my self-care approach, please do contact me by email.