In the busy and difficult world of healthcare, the concept of shared decision-making is something we've all heard about. Yet, delving into conversations with patients on the Aural Apothecary podcast has revealed a gap in practice that demands our attention.
The Aural Apothecary was born from the depths of lockdown, a period that juxtaposed the challenges of professional life with a newfound period of uninterrupted time. Amid this paradox, I, along with two colleagues, embarked on a journey that had long been on our minds – creating a podcast dedicated to medicines and patient care.
Launched during the tumultuous times of the COVID pandemic, our podcast resonated widely as we engaged with healthcare professionals from diverse backgrounds. We delved into the sources of their dedication to patient care and explored the profound meanings medicines held for them. A focal point of our conversations was a discussion about a drug that had left an indelible mark on their lives – a prescription that invoked vivid memories, a dispensing error or a drug they had been involved in developing. But the most powerful stories came from people who had experienced a drug for themselves. One that had helped them overcome their own illness – or cure a loved one.
And so for our latest series, we decided to do something different. Instead of talking to healthcare professionals, we would talk to patients. We would find out what medicines mean to them, and what they thought about the people treating them. We asked them for their ideas to cure an ailing NHS and the answers were innovative and inspiring. So what did we learn?
Their insights were woven into what we affectionately dubbed the #NHS75 Tonic – a remedy for the NHS [See Graphic]. While personal to each contributor, their suggestions held significant implications for the broader healthcare system. A few recurring themes stood out and can help to guide us toward a more person-centred approach.
Firstly, the burden of a medication regimen became evident. Patients grappled not only with the physical burden of taking medicines but also the psychological and practical hurdles. Our discussions with Deborah Duval, a kidney transplant recipient, exposed the complexities of adherence. https://www.theauralapothecary.com/52-deborah-duval-let-me-live-life-as-a-transplant-recipient/ You might think having a new kidney that you rely on to survive might be enough of a motivation to take your medicines. She found it so difficult to adhere she ended up needing a second kidney and it was only then she managed to deal with the psychological burden of taking her medicines. Timing medications, juggling busy lives, and managing side effects – these challenges constituted a substantial burden, akin to a job in itself. Graham Prestwich, another guest, likened patients' roles to "Project Managers" of their own health, illustrating the intricate nature of this responsibility. https://www.theauralapothecary.com/51-graham-prestwich-the-patient-as-a-project-manager/ Imagine having a complex project thrust upon you, with the need for a detailed plan, while dealing with the trauma of the diagnosis of a serious chronic disease. This is the situation many of our patients find themselves in.
Secondly, the significance of treating patients as whole individuals became evident. Delving into their personal histories and understanding their motivations and struggles was vital. Louise Jenkins, a guest living with cystic fibrosis, emphasised that medicines weren't merely an aspect of her life; they were intricately woven into her every decision. They WERE her life. https://www.theauralapothecary.com/57-louise-jenkins-and-cystic-fibrosis-not-part-of-my-life-but-my-whole-life/
Louise Trewern, another guest, experienced liberation from chronic pain when her caregivers delved into her past, uncovering underlying factors that medicines alone couldn't address. https://www.theauralapothecary.com/59-louise-trewern-joining-the-dots-around-chronic-pain/ This underscored the importance of holistic care beyond prescriptions.
As healthcare professionals, how can we capitalise on these insights to elevate our practice? The answer lies in a recurring term that graced our podcast – shared decision-making. While familiar to us all, its mastery remains a challenge. Professor Alf Collins, a recent guest known as the "Godfather of Shared Decision Making," might have a solution. https://www.theauralapothecary.com/episode-53-professor-alf-collins-no-decision-about-me-without-me/ His contribution to the Tonic – "No Decision About Me Without Me" – underscores the commitment to involving patients in their care decisions. Though it may demand more time initially, this investment pays dividends in improved patient outcomes.
To embrace this concept fully, Professor Collins recommends developing a genuine curiosity about our patients. This entails understanding their concerns, motivations, histories, and needs. The journey of shared decision-making is both simple and complex, but it starts with our genuine curiosity and commitment to the well-being of those we serve.
For those eager to delve deeper into this philosophy, Professor Alf Collins' co-written seminal paper on shared decision-making provides a solid foundation: "Making shared decision-making a reality: No decision about me, without me" https://www.kingsfund.org.uk/publications/making-shared-decision-making-reality. Additionally, NICE has published guidance on the topic, offering a comprehensive resource https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-making .
As we continue to walk the path of person-centred care, let's infuse our practices with genuine curiosity, empathy, and a commitment to shared decision-making. It's time to harmonise the symphony of healthcare, ensuring every note resonates with the well-being of the patients we serve.
Paul Gimson is Assistant Director of Improvement at Cwm Taf Morgannwg University Health Board and co-host of The Aural Apothecary podcast (www.theauralapothecary.com).
This article first appeared in the August 2023 edition of The Welsh Pharmacy Review https://waleshealthcare.com/wp-content/uploads/2023/09/WPR-Q3-Aug-23-WEB.pdf
Twitter @pgimmo and @AuralApothecary
