This is not a typical Diabetic Shambles post. This one’s quite carefully thought through about an important issue that should be really important to all of us PWD.
Structured Education. These are programmes that take us away from our day to day life and give us the time and space to think about our diabetes – and to let those thoughts breathe. For me, personally, and for many others, programmes like DAFNE are a turning point in how we approach and think about our diabetes.
I have not tried to talk about Structured Education in Type 2 Diabetes, as I don’t know enough about it – but I am sure many of the same issues are true.
Yesterday at the Diabetes UK Professionals Conference, Andy spoke passionately about what he got from attending DAFNE – and how he had initially turned it down because 5 days income was too much to lose.
I want to make a case that Structured Education is important enough that patients should not lose out economically in order to attend.
At present, 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. The estimates for attendance at structured education vary between 1.9% and 11.9% of people with Type 1 diabetes.
The Benefits of Structured Education
The headlines for this are good – patients who attend DAFNE have an average reduction in HbA1c of 1.0% (approx 10mmol/mol), though we also know that those who start off in the worst positions gain the most. People have also been demonstrated to reduce their insulin requirements through DAFNE’s process of rebalancing basal and bolus doses, rates of significant hypoglycaemia are reduced.
Alongside all the ‘clinical benefits’, as a person with diabetes you learn a load of skills that are really quite tricky to figure out by yourself. How to exercise with diabetes, how to handle sick days, it even brings up alcohol and how to think about that.
That’s not to say that these things are all perfect – many of us who have attended tweak what we learn. But even if we don’t follow DAFNE to the letter afterward, it gives us a lot more than just strategies.
For me, it was about having the time and mental space to think about my diabetes – and almost nothing else – for a week. It was liberating.
At my time of diagnosis in 2007, i was phoned at 7pm by the Out of Hours GP to say that my blood results showed I was likely to have Type 1 Diabetes and I needed to see my GP urgently the next day. I went, saw my GP, was sent straight on to see the DSN at the hospital where I was started on insulin, given a meter, and off I went.
I went back to work the next day.
I then spent the next two years groping around in the dark, vaguely trying to figure out what I was doing. I could see people online who were doing all sorts of exotic things, but I didn’t have the time or the broader understanding to be able to put any of this into practice.
When I did DAFNE it was the first time I’d ever met any other PWD. It was the first opportunity I’d ever had, in the tea breaks, to talk about my experiences and to find those common annoyances. It was the first time I didn’t feel alone.
I know that we now live in a world of social media – but none of my DAFNE peers were active on social media in 2009, and none of them are now either. None of them are in the DOC. We have to accept that while the DOC is large and loud it represents a relatively small number of engaged and motivated people with diabetes. It doesn’t, and won’t, catch everyone.
The other advantage of DAFNE is that it is quality-assured and evidence-based. This doesn’t mean it works for everyone, and it doesn’t mean I think you’re doing the wrong thing if you do the course and decide not to apply the principles. Yes, it doesn’t cover LCHF or LCHP, it doesn’t take into account Sugar Surfing or Think like a Pancreas. But that’s not what it’s for. These are approaches that are adopted by groups of highly motivated, highly engaged PWD – and within that they’re the further subset who find that they work for them. (There’s a great blog on this kind of stuff by Dave here)
I’ve tried them all. I can’t afford/enjoy carbs too much to stick to LCHF/LCHP. I do bits of sugar surfing – but i’ll be damned if i’m doing to chew my food really slowly, or eat v similar things day to day. DAFNE is still the approach that gets it right, most of time, for me.
The Benefits for Employers
Diabetes is a disease that has its effects over both short and long-term time courses. In the short-term we deal with hypos and hypers. Incidental colds and the like can take a little longer to get over.
In the long-term, diabetes can ravage our eyes, our kidneys, our feet and our hearts. We live approximately 12 years less than our peers who don’t have diabetes.
This article tries to examine the costs of Type 1 Diabetes. Through a combination of sick days, going into work when you’re not really well enough to be there, and parents/partners taking time off to care for someone with Type 1 Diabetes, the cost to the economy is approximately £900 million a year. This figure is rising too – by 2035 it is projected to be £2.4 billion.
Treating complications costs the NHS £700 million each year. Provision of education costs £4 million a year (although this figure should be higher – as we know access is not universal).
So employers, as a whole, lose £900 million a year to diabetes. This works out to approximately £2,500 per adult with diabetes PER YEAR.
For structured education, we are asking employers to release people with diabetes (or parents caring for children with diabetes) for Structured Education for FIVE DAYS. Once. Ever.
Average earnings in the UK are £26,500 per annum – so the average cost of releasing a person with diabetes for education is less than £400. Even if attendance doesn’t eliminate all of the costs to employers of a person with diabetes – it’s not hard to imagine that it will pay for itself.
This leads me to the two fundamental points I want to make:
1. Employers should be required, under the Equality Act, to release people with diabetes (and parents of children with diabetes) for Structured Education courses, without financial penalty. This constitutes a ‘reasonable adjustment’ to accommodate their ‘disability’*.
*I acknowledge that many people with diabetes do not consider it a disability – but in the legalese of the Equality Act this is how it is considered.
2. Commissioners should be required to commission NICE-endorsed interventions for their patients. Chasing cheaper alternatives to current structured education is wrong-headed and will sacrifice quality.
We can all talk about pumps and CGM and libre and Skype and email and virtual clinics until we’re blue in the face, but until we’re getting the fundamentals right this is all, to quote the great Charlie Brooker, a Tosser’s Mirage.
4 thoughts on “Structured eDucation: Making the choice easier”
How do you deal with the stigma that people feel about taking the time out from work as a funded week off? There is a huge reluctance amongst a significant number of the offline groups about acknowledging that they are diabetic in front of others, and especially in front of hierarchical figures. Whilst the equality act is there to stop this having an impact, unconscious prejudice still occurs.
This is, I feel, where some of the biggest issues arise and why we need to be able to provide both DAFNE and something to make people realise that doing DAFNE is worth it.
Some ideas have included “DAFNE Taster Sessions” within the normal 6 monthly clinic appointment where you receive an invite to your appointment and a 3 hour “DAFNE-lite” workshop which includes talking to other T1s and some basic stuff about carb counting, insulin and BG levels, improved courses on-line similar to the one that BDEC offers and having anyone who has done DAFNE act as a “DAFNE champion” at the clinics they attend, with a badge and a mandate to speak to anyone in the clinic waiting room about why it’s good. That might also get people talking in the waiting areas.
We can also, each, start talking to people in the waiting areas. We are gregarious enough online, so why not be more so face to face. It’s easy enough for someone to say no!
Stigma is a tough one. First off I think this message about it being a reasonable adjustment needs to come from above, Clinics referring people and DUK could make a big stink about this.
Demonstrating it’s worth it is also v important – the taster stuff is a good idea, but i worry a bit that people might take the little you get there and take it away without the wider DAFNE context.
People who’ve done it selling it to people who haven’t is a great idea. Even if those of us willing volunteer and DSNs can offer to put someone on the fence in touch with a DAFNE graduate to answer any questions by phone/email/face-to-face.
Insomnia struck me tonight and I did what we all know we shouldn’t do. I hopped online to see what other people who have diabetes are doing. Thanks so much for a thoroughly enjoyable and informative blog. Haven’t figured out where you “hail from,” but I’m sending greetings to you from New York, USA.