Tuesday 2 May 2023

Come Together: thoughts from the Diabetes UK Professional Conference 2023

I spent two busy but enjoyable days in Liverpool last week attending part of the Diabetes UK Professional Conference, having earlier this year been appointed as Chair of the charity's patient group, the Diabetes Lived Experience Advisory Committee.

I was there as one of three representatives of this group, free to attend any of the lectures and presentations, and to meet and mix with the hundreds of HCPs at all levels who attend this three day event. As its name suggests, the conference is organised first and foremost for healthcare professionals in the field of diabetes care, and over the years it has become very much THE get-together of diabetes HCPs, attended by not only the big names in the field, but also rank and file NHS staff, with places highly valued and sought after. In addition, like any such healthcare gathering, there is the accompanying “trade fair”, at which pharmaceutical and medical technology companies get a chance to display their wares to those whose job is to assess, prescribe, and administer them. It’s an impressive event, administratively and logistically challenging, not to say costly, but my over-riding sense is that it is a hugely worthwhile and successful exercise.

The conference has left two salient points in my mind, and when thoughts such as these get stuck in my mind, it always seems worth sharing them, to see to what extent others feel likewise.

The first is simply the fact that conferences like this are very, very valuable. Sadly, other commitments meant that I could only attend for two days, but my time at Liverpool was more than enough to remind me just how useful and important such events are.

Zoom, Teams and the like were a lifesaver during the pandemic but to experience this flagship conference, happening fully in person for the first time since 2019, was a forceful reminder of the value of face-to-face conferences.

Easily dismissed as "jollies", gatherings of professionals in any field are surely of inestimable value, even if that value is perhaps hard to quantify: As well as the formal content, it was a joy to witness and indeed to be part of the coffee break chats, the lunches, even the after-hours drinks. I always felt that way when I was fortunate enough to attend day or residential conferences and courses during my own working career as a schoolteacher, and I remain as convinced as ever. ”Comparing notes”, even in snatched conversations over a coffee is of immense benefit to anyone in any walk of life, often a precious and reassuring reminder that whatever challenges and difficulties we are facing, someone, somewhere else is also facing it. A problem shared is, indeed, a problem halved.

For me personally, to catch up with so many of the valued friends and acquaintances whom I have been lucky to make among HCPs, diabetes charities and diabetes tech companies was a pleasure.

This brings me neatly to my second point: to what extent should the likes of me, a “patient”, be at an event like this? What, if anything, is the value of lived experience in improving and developing diabetes care?

Over the years, and particularly over the past decade or so, it has become an increasingly accepted wisdom that the voice of lived experience should be front, left and centre at diabetes conferences. A popular hashtag in diabetes social media is #NothingAboutUsWithoutUs, a line borne of frustration from the days when people with diabetes were too often treated like naughty children, their condition described as “poorly controlled” and their attitude as “non-compliant”. In many ways, this goes hand-in-hand with the Language Matters movement, which has done so much to modify stigmatizing terminology used by HCPs and in so doing to also modify attitudes.

So in a sense, it’s the proverbial no-brainer: those living with a condition should indeed have a voice where those who treat it are gathered together. Over the past week, when diabetes social media here in the UK have been full of content about the week’s events in Liverpool, it has been easy to find calls for the lived experience voice to be present at every lecture, discussion or symposium.

Perhaps surprisingly, given my four years of membership of the Diabetes UK Patient group, and my recently adopted position as Chair, I find my enthusiasm for the idea of ubiquitous lived experience participation to be somewhat nuanced, and this worries me. Surely, a strong patient voice is unequivocally a good thing?

Well of course the lived experience voice is a good thing, but I do feel that there is a risk that we overplay the controversy, egged on, perhaps by angry advocates rather than the voice of the majority.

Firstly, because I think there is sometimes a place for humility, for acknowledging that the professionals actually do know best, and that they have a right to meet together and exchange views privately. The loudest voices calling for ubiquitous lived experience involvement are almost by definition those most engaged with and expert in their condition, but few if any have the breadth, depth and variety of experience of HCPs. In my profession - teaching - I was a consistent and sometimes lone voice in advocating student involvement in the teaching and learning process, in the formulation and execution of policies, and especially in assessing and measuring progress. However, to deny altogether that the teacher knows more than the learner is a betrayal of logic: sometimes, teacher does know best.

One of the most absurd pieces of so-called wisdom that gained popularity in some quarters during the run-up to the Brexit vote in 2016 was Michael Gove's “I think the people in this country have had enough of experts”. An example of the damaging populism that drove the political process during that era, Gove's soundbite was both arrogant and delusional. Advanced human society is built upon expertise at every level: “to each according to their need, from each according to their ability” is how a civilised society ensures that we benefit collectively from the specialist skills of others, not least when it comes to healthcare. Far from having had enough of experts, I am deeply grateful for them, and in terms of my own diabetes, I am grateful not only for the pioneering expertise that brought us injectable insulin just over a century ago, but also for the technical expertise of those who have driven such spectacular advances in diabetes technology over the past decade or so. Listening to some of the content in lectures at DUKPC, I was left not so much with a burning desire to be represented, but rather a feeling of humble gratitude that there are people as clever as that working on better ways to treat and care for me.

Now of course there are areas when the patient voice is not just valuable, but crucial, and indeed still under-represented. The emerging area of diabetes psychology springs most readily to mind, where there is surely a vast amount to be learned by professionals listening to the voice of lived experience rather than trying to apply theory to practice. Walk a mile in our shoes before telling us how it feels to  walk in our shoes is surely how diabetes psychology should be applied, and I have heard alarming tales from a friend who lives with a diabetes-related eating disorder of the mis-application of theory in a manner which is counter-productive at best, harmful at worst. So yes, the voice of lived experience can be crucial in advancing the work of experts, but should always be offered and accepted collaboratively, rather than confrontationally.

Indeed I can’t help wondering whether here in the UK at least, we are actually pushing at an open door. In personal terms, what struck me most as I travelled home from Liverpool and reflected on my experience there was how a conference like this one is in fact a wonderful coming together of ALL stakeholders in the world of diabetes. When I had the chance to address the Diabetes UK HCP Council on the eve of the conference about the value of peer support, I was keen to make the point that in the UK, we are uniquely blessed with a diabetes community in which the overwhelming majority of HCPs are already respectful of and receptive to the expertise of their patients. Moreover, the very fact that it is a diabetes charity, not a professional association, which organises this event, is significant: we are exceptionally well served in the UK by our NHS and by our diabetes charities. Who needs angry advocates when we are blessed with the passionate, driven healthcare professionals who have brought about such spectacular advances in technology access for people living with Type One, or charities like Diabetes UK and JDRF who are driven by a passion for improving care and pursuing the elusive cure?

Together at conference: Partha Kar, Diabetes Lead for NHS England
with Karen Addington & Chris Askew,
CEOs of JDRF & Diabetes UK respectively. And me.

DUKPC is, above all else, a collaborative event, a chance for the community to Come Together (there's the customary song title if you click on the link, with a deliberate Beatles/Liverpool slant). A chance for the experts to do their thing, a chance for the companies to sell their wares, a chance for the professionals to hear from their patients where appropriate, and a chance for the charities and support groups to care and share.

Nothing about us without us? Of course the voice of lived experience should be at the centre of diabetes care, but I’m not actually sure that we need to sound quite so angry about it. Maybe, just maybe, diabetes care is an area in which we British are actually quite well served on a global scale, thanks in no small part to the voice of lived experience. The remarkable reach of Flash or CGM - 90% of people living with Type One - has been achieved by passion and determination on the part of HCPs (led by Partha Kar) informed, encouraged and supported by the patient community with which many HCPs have so willingly engaged over the past decade or so.

We in the UK have had much reason to feel rather ashamed and second rate over recent years, and the air of crisis which accompanies the NHS remains a severe and very real cause for concern. But this should not blind us to what has been achieved in the world of diabetes care, especially Type One care, and the fact that this has come about by such a collaborative effort. It was achieved not by shouting at each other and demanding better representation, but rather by a mutual realisation that collaboration and cooperation are almost always how progress is achieved.

The real challenge, and one in which I hope I can play a small part over the coming two years, is to spread this success into care for people living with all types of diabetes. 

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