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. 

Patience.....or patients?

It's an old joke, based like many on the rich supply of homophones in the English language:

“You need patience to be a doctor” 😂😂😂

Or is it patients? Hahaha.

Well of course, you need both. A doctor with no patients would be rather pointless, whilst a doctor with no patience would be, well, unlikely to succeed.

But this post is about the role of patients in healthcare, specifically in respect of diabetes, as it's the area I know a bit about. Regular readers of my blog will know that all my posts have to have a song title, so please....have a little patience. Or maybe some patients?

I've noticed much discussion on the role of patients in diabetes care ever since I started using the informal diabetes peer support network known as GBDOC around 5 years ago. In diabetes, especially Type One diabetes, the role of the HCP is to teach the skills needed to live with the condition, then to leave it to us patients to get on with it. 

The skills and knowledge required are daunting and all-too-familiar to those of us who have had to learn them: calculating, checking, testing, guessing, and judging; handling and operating advanced, expensive pieces of kit; and above all self-administering constantly varying doses of an expensive and potentially lethal drug whilst continually monitoring its short and long term effects.

In the case of those diagnosed in childhood, this expertise is learned and practised by parents and carers, then handed over to the child, often at a fairly tender age, to allow them to live as normal a life as possible as a teenager. Is it any wonder that people with Type One are so often exceptionally resourceful, composed, capable, balanced and empathetic individuals?

People with diabetes, and parents of children with diabetes, are, in effect, experts in the condition. Now of course, that is to an extent true of any medical condition. If something affects you or your loved ones, you very quickly know all there is to know about it. Fifteen years ago, I and my family suddenly became very knowledgeable about embolization and stereotactic radiosurgery when my son suddenly presented with a previously undiagnosed life-threatening arteriovenus malformation. He owes his life to the NHS, a pioneering German radiologist at the Walton Centre in Liverpool and radiographers at the Hallamshire in Sheffield. Seven procedures on his brain virtually eliminated the risk of a fatal haemorrhage.

But there's a crucial difference: in my son's case, as in most other diseases and conditions, all we could do was stand and watch in awe and fear as the doctors, nurses and radiologists did their thing. The expertise was manifestly theirs, even if the unwanted knowledge was ours.

Whereas with diabetes, it's the patient (or parent) who is the expert. S/he administers the treatment, assesses its effects and adjusts it constantly according to a range of factors – and does so 24 hours a day, 365 days a year, for life. Input from HCPs is minimal compared to that of the patient.

Which is why - and I apologise if this sounds pompous - I was elated by a response I received when recently I was given the opportunity to speak to members of my local CCG in support of the widening of access to CGM, flash monitoring and insulin pumps on the NHS in my home area. I spoke about the life-changing benefits, both physical and mental, that I and many others have experienced from self-funded use of the FreeStyle Libre to help monitor blood glucose levels. At the close of the meeting, a senior member of the CCG, a GP with forty years experience in general practice, referred to my submission as that of an “expert patient” and urged his colleagues to take strong note of my input in reaching their forthcoming decisions on access to FreeStyle Libre sensors on prescription. I walked out of that meeting feeling valued, understood and supported, because a man whom I respect and consider to be an expert in medicine had acknowledged me to be an expert in my own very small way.

So therein, surely, lies an important way forward for diabetes care. Of course we require education and training by experts,  both initially and when necessary along the way, rather like a pilot learning to fly. But once we can fly – and most Type Ones are pretty good at that “flying” – we just need the appropriate support, checks and the latest equipment where feasible, and an acknowledgement that we know pretty well how to get safely through our days and nights of flying. Judgements and criticisms from those who - to extend the metaphor – know how to fly but have never actually flown, are most unhelpful.

As we enter Diabetes Week 2018, I am delighted to report a growing awareness of patient expertise and its role in diabetes care. A small but influential band of doctors - known as the #DocsOfGBDoc - and their DSN colleagues have engaged with the online patient community through #GBDoc chats both structured and unstructured in a spirit of cooperation, professional inquizitiveness and humility, to the extent that I and others consider them to be friends, and many users of the #gbdoc know them better than their own HCPs.

Of course HCPs should not feel compelled to interact informally with patients, especially their own patients. There is a place for professional distance and those HCPs who use social media such as GBDoc should be aware that eloquent, plausible  and forceful patients may not necessarily represent the majority and can become disproportionately influential at the expense of a more reticent minority.

However, I salute those HCPs who do engage with the patient community and thank them all for their friendship and support. Perhaps they could remind others that patience and patients both have a crucially important part to play in healthcare.