This week I had the honour of being an invited blogger for the Diabetes UK Professional Conference 2017. The conference curriculum was intense and all the bloggers felt their privilege and obligation strongly. I’ve been sharing highlights and observations via twitter and Instagram @bintsomama and via targeted Facebook groups, and over the next few weeks I’ll be editorialising observations on this site, as well as sharing reflections on the transformative impact of spending time with a group of adults thriving with type 1 diabetes.
The dedicated clinicians, HCPs and researchers I met and listened to almost universally filled me with overwhelming gratitude, and I was particularly grateful to see a high level of patient focus.
Yet the breadth of the programme made me feel that I was entering two parallel worlds.
The future ain’t what it used to be
Paul Johnson quoted Yogi Berra saying: “the future ain’t what it used to be.” Johnson’s team are looking at donor islet cell transplantation and shared the advances in encapsulation (which aims to protect the islet cells from both rejection and the continued autoimmune attack that causes type one diabetes). Islet cell transplantation is available to limited numbers of people with type 1 currently, because of the associated risks.
I was stunned to see the progress of stem cell research: the elusive goal of producing functioning pancreatic beta cells from stem cells seems within grasp. Matthias Hebrok’s team have demonstrated a 92% correlation between Beta cells and hESC-derived Beta-clusters (in layman’s terms, home grown from carefully selected stem cells).
We followed the steady march from insulin pump, via the sensor augmented pump (Smart guard on the Medtronic 640 pump which reduces night-time hypos by suspending basal insulin delivery before the blood glucose goes low), to the possibility of the “closed loop” 670 (which adjusts basal insulin to manage hyper as well as hypo glycaemia) in the UK next year and the breathtaking results of the different artificial pancreas trials.
We learnt about the stunning impact of continuous glucose monitoring on HBA1C (in some trials), across all levels of education and type of insulin use and its undeniable impact on time in range. For an increasing number of people with type one diabetes, the future seems within reach.
And then, and then…
The trouble with the here and now…
Brian Frier spoke of the Scottish experience in tackling the enormous variations in care and outcomes across people with diabetes. It looked familiar from my reading of the paediatric audit.
Access to care processes is worse for adults with type one than those with type two. Both are serious conditions, but given the complexities of type one and the far higher risk of complications, this is unacceptable. There was an admission from delegates and speakers that the focus on type two prevention has perhaps been detrimental to people with type one. Partha Kar hinted about forthcoming announcements designed to address this.
Chris Askew gave equal airtime to children with type one and type two in his opening speech. Fair enough? Latest data shows 258 children with type two under 15 in England and Wales. 18,549 live with type one. You decide.
In his speech, Chris alluded to the improvement in HBA1C in children with diabetes, citing the 10% improvement in those achieving “good control”. It is true that now around one quarter have an HBA1C of 7.5% (58) or below. But the NICE target is 6.5% (48) and only one in 16 children achieves this. Almost one in five also has a “very high” HBA1C, of 9.5% (80) or above, indicating an AVERAGE blood glucose of 12.5 mmol (target range is 4-7 mmol).
The overwhelming majority of children over 12 do NOT receive all their health checks and many are already experiencing early complications. Screening for complications for the under 12s is not a NICE requirement and many, many children can wait up to a decade from diagnosis to receive checks on their kidney function, for example.
My next blog will cover psychological support, but data shows that this is hugely inadequate, despite being part of the NICE guidelines.
A brief, but very moving presentation from a Newcastle based group Type 1 Kidz described how one teen had not tested her blood for four months (recommended is at least five times a day) before joining. Their efforts to reduce DKA admissions and engage hard to reach patients showed the power of grass roots support.
I was pleased NOT to hear “non-compliance” or “non-adherence” bandied about by clinicians (at least in relation to Type 1). Emma Wilmot empathetically described the barriers to blood testing, using the examples of a shift worker in a supermarket, or a car mechanic.
It’s crystal clear that in type one diabetes the model of educated physician prescribing to patient doesn’t work. I’ve written before that our clinical time accounts for 0.02 per cent of the time we live with and manage this 24/7 condition (based on two hours of contact time a year). The variations in outcomes this creates is extreme.
As one delegate put it bluntly,
“if you’re type one and you’re not bright, you’re screwed.”
On the one hand you have an uber self-educated DIY group (self-funding or pressing the system for appropriate tech and even hacking technology to achieve outcomes that current tech can’t provide). On the other you have that girl, repeatedly admitted for DKA, refusing to test or the long-diagnosed adult who doesn’t understand why they have repeated severe hypoglycaemia when they take the same insulin dose for a salad or a pie. DAFNE is incredibly effective in educating, but take up is low.
Hard pressed HCPs are desperate to keep up, trying on one hand to learn about advice for self-dosing from CGM trends or to support the intense requirements of pump starts, on the other to meet basic needs.
Some of the technology sessions disappointed me, until I recognised that as a self-educated carer I’ve had more opportunity than significant amounts of overworked HCPs to educate myself about this.
And finally, there was a welcome emphasis on glucose variability (a 300% difference in overnight insulin requirements were found in closed loop trials) and we heard about the variability in response to activity both between individuals, and in the same individual on a different day.
Self-management even with high skills and motivation is incredibly challenging (as we heard from athlete Tom Neal who was open about his personal glucose variability during sport). We heard from Pratik Choudhary about patients with an (outstanding) 2.2 standard deviation concerned about their number of highs and lows. In his words, “type one diabetes is an inherently unstable machine.”
“type one diabetes is an inherently unstable machine.”
This brings us back to the importance of what might seem distant and rarified now. That incredible research that brings us closer to a cure which takes the burden off the individual and the system. Hope is in a cure (and great tech in the meantime).
Sadly, though, seeing the current state of play, I can’t imagine how this could roll out to benefit my child in his young adulthood. The future of an already stretched NHS isn’t looking bright. Practically, how would he ever access a stem cell transplant when we’ve had to battle to get sufficient test strips?
Perhaps the next conference will give some clues…