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?
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| 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.
