I’ve procrastinated with this post. Last week I was one of the official bloggers at the Diabetes UK Professional Conference (DPC). Professional. That means scientists, doctors, and researchers presenting findings from their studies, and debating new approaches in diabetes care.
I run a parenting blog.
Some of my readers are parents of children with type 1 diabetes, by virtue of the fact that I occasionally write impassioned posts on the subject since GG’s diagnosis. I applied for the position of conference blogger, but I questioned why I was awarded it. Most of my readers do not have diabetes on their radar at all. But…
“Diabetes is resonating at new levels, with new audiences.. the challenge of our time..” Chris Askew, CEO, Diabetes UK.
I write about diabetes sometimes to offload, occasionally to rant, but mostly to educate. My game is advocacy. Diabetes is tough to live with, not the simple injection-and-eat-less concept that many believe it to be. Diabetes has a profile that does its sufferers no favours, and my aim is always to gently let people know how tough it is, how they can support people with diabetes, and how to spot it before it does catastrophic damage.
So my next few posts will aim to educate not just the people interested in the research for themselves, but the people in the world at large who would be better informed for knowing some of what went on in Glasgow last week. If you’d like to know more about how DPC works, there is an excellent post here.
Diabetes Education: Managing the Risk
“Type 1 diabetes is doubling every 20 years. There is an annual increase of 11% in children 0-4 years old.”
Just take a moment to dwell on that statement, from a research presentation at the conference. Think about how much we stress about the rate of inflation, the increase in waiting times for a GP appointment, or the proximity you now need to have to your school of choice to be guaranteed of a place. They’re nothing, compared to that statistic. Every week someone new is inducted into the Facebook group Children With Diabetes. Anecdotally, they seem to be getting younger. No-one knows why.
“The cost of diabetes to the NHS is £9.8 billion. 80% of that cost goes on treating complications.”
To spell this out, to those who don’t know, complications of diabetes typically mean kidney and heart failure, varying degrees of damage to the eyes, including blindness, and limb amputations. It’s not pretty. It’s also a lot of money spent on medical treatment that is largely unnecessary if the person with diabetes is able to maintain a healthy blood glucose level over the course of his life. That however, is a big ask. Blood sugar control is infuriatingly difficult to achieve, even for the most motivated patient, and it has to be done every hour of every day, for a lifetime. I’ve heard it described as having a second full-time job, in addition to your full-time job, school day, and social life. It’s an apt description.
Diabetes cost: the biggest savings come with education
“If everyone eligible for a DAFNE course in the UK attended one it would save the NHS £48m a year.” Helen Hopkinson, Consultant, Glasgow.
Essentially, DAFNE provide structured education in self-management of diabetes, including how to recognise and treat a hypo, but not over treat and end up too high; how to count carbohydrate in your food, and make insulin dosing adjustments when you eat; how to manage insulin such that it meets the needs of exercise, hormonal fluctuations, illness, and growth and age-related changes. The DAFNE strapline flashed up: “DAFNE: Less guesswork…” and I didn’t need to read any further.
Helen maintained during her presentation, that education is essential as soon as possible after diagnosis, even in honeymoon – a period of partial remission, when the pancreas recovers enough to temporarily produce some of its own insulin. I can vouch for this. In the first weeks after my daughter’s diagnosis, we were told to deliver very small, set doses of insulin with every meal, and limit snacks. Of course, the insulin didn’t fit the meals. Children, and families with real lives don’t eat the same things every day. Sometimes she might have a omelette and a small yoghurt – she’d have a hypo. Next she might eat a pasta dish, and finish with a banana – she’d be sky high a couple of hours later. And try limiting snacks with a child!
Education made all the difference. As soon as we were taught how to count the carbs in her meals, and accurately dose the insulin for them, the rollercoasters lessened. It changed, as the condition progressed, as she grew, but the education we had told us how to respond to that – not perfectly, for perfection is not possible with diabetes, but in a way that was safe and logical.
“Unless you live with T1D you are not the experts. Best we can be is ‘specialists’.” Partha Kar, Consultant, Portsmouth.
The average patient spends 3 hours a year with his consultant. For the other 8,757 hours they must manage their diabetes themselves. With a condition that needs to be managed in response to a multitude of external and internal conditions, a medical team can’t hope to achieve tight control for their patients. Patients need education so they can make the decisions most likely to keep them healthy.
So why isn’t diabetes education delivered to more?
The conference explored issues surrounding diabetes education in various contexts. Some of the problem is cost, inevitably: education costs around £50 per person; ‘short-termism’ – we spend money fixing the consequences of diabetes, rather than on preventing them; budgets and awareness – a lot of the healthcare trusts simply don’t have the budgets to fund places, or even know how to access them. This needs to change.
But one of the biggest cited reasons for lack of diabetes education is the motivation of patients – not to change, but to attend. Currently diabetes education is offered in 5-day chunks, which for many is difficult to fit into their lives. Those in employment state the financial loss of taking time off work to attend.
How can diabetes education be accessed by all?
This was a key theme of many of the education sessions. Kris, a medic and a diabetic argues that far from being a burden or personal cost, diabetes education should be a right supported by workplace and employment law. At the moment, he points out, “some people take annual leave to attend, some get sick notes to attend, some employers (like JDRF) allow their employees time off to attend. But mostly, people don’t go.” That’s a chilling thought. Kris believes that the structure of a formal course (as opposed to online or ad-hoc learning) provides opportunities for understanding, and motivation for patients to change the way they live with diabetes.
Working with a group offers unparalleled opportunities for peer support and individual engagement long after the course has ended. Andy talked about how attending structured education ‘changed his life.’ Although he had resisted attending due to costs of childcare and loss of income, he found that the group sessions showed him that he wasn’t alone, that other people understood what he was dealing with, and that was crucial to his sense of feeling in control.
Later in the week we heard from teenagers who had thought that a course would have nothing to offer them, it would be boring, or would highlight the stigma they felt around having diabetes. Again, once they had attended a DAFNE course, each one of them said it had changed their lives.
Is it all about education?
To return to the title of this post – a bold statement – I will end on a piece of research presented at the DPC which might raise some eyebrows amongst those in the diabetes community. We, as sufferers, are hungrily interested in anything which might make this condition easier to live with. Of course, a cure is the holy grail; in its absence we fixate on new technology, gadgets and apps, anything that might make this awful disease easier to live with.
One day it will be the artificial pancreas. Perhaps there will eventually be an implant. Or a ‘smart insulin.’
For now the latest tech is represented by the insulin pump, and continuous glucose monitor. I won’t debate how those work, or my thoughts on them here, but one presentation, by Simon Heller, consultant in diabetes at Sheffield, showed evidence that there was no difference in clinical outcomes between patients using multiple daily injections and those using an insulin pump. No reduction in HbA1c (the blood test which indicates how effectively the blood glucose of patients with diabetes is controlled over the long term). With one caveat – education. Adult patients with similar control, given the same levels of structured education, achieved similar improvements in overall control irrespective of which insulin mechanism they used.
Told you it was all about education…
The REPOSE trial investigated the relative effectiveness of pumps over MDI and structured education. For more information click the link.