Managing Expectations – by Olly Double

A few years ago we met up with a family whose son had just been diagnosed with Type 1 diabetes. The idea was that as veterans – our sons Joe and Tom having had the condition for some time – we could offer them advice and solace over a game of ten pin bowling at our local alley. There was something slightly surreal about comparing notes on insulin and hypos whilst hurling implausibly heavy balls down a polished runway and wearing shoes previously worn by a thousand strangers, but it was quite a pleasant afternoon.

However, I do remember a note of tension when we got to the subject of the care their son was getting. He’d been put onto a regime of two injections of mixed insulin a day, and our experience of this with our own sons was less than spectacular. In case you don’t know, the basic principle of mixed insulin is that it’s a mixture of a clear, fast-acting insulin that covers the food you’re just about to eat, and a cloudy, long-acting insulin that covers food you’re likely to eat later and also acts as a basal insulin. Compared with the way the body produces insulin in people without diabetes, mixed insulin is a very blunt instrument indeed. It’s a bit like trying to reassemble the complex inner workings of a watch whilst wearing big, woolly mittens.

Tom was on mixed insulin for years, and it was almost impossible to get any kind of control over his blood sugars. He could go from raging high blood glucose levels to terrifyingly low hypos within an hour for no apparent reason. The clinic he was at showed no particular concern at this, or at his consistently higher-than-recommended HbA1c levels, nor did they offer much in the way of concrete advice on how to improve his control. They seemed to think that was all you could expect for a young child with Type 1.

By the time of our bowling-and-bolusing afternoon with the newly-diagnosed family we had moved to a much better clinic in London, and Joe and Tom were on insulin pumps. We’d taken the woolly mittens off and were making a much better job of fitting all those fiddly cogs and springs back in the watch. Both boys had much better blood glucose control, and even when things went awry – which they inevitably will when your pancreas is knackered – we mostly had an idea of what had caused it and how to remedy it. We’d also become quite good at the subtle art of carbohydrate counting.

The newly-diagnosed boy, on the other hand, was at the clinic that Joe and Tom used to go to and was very much back at square one. All the confusion and upset that a diagnosis of diabetes introduces into the whole family, with only mixed insulin to try and bring things under control. We probably shouldn’t have said anything, but they were after advice and we knew from experience that the care they were getting was less than the best and that the mixed insulin they’d been prescribed was a very blunt instrument. So we gently suggested that there were other ways of dealing with diabetes. We told them about insulin pumps and carb counting, and hinted that if you’re not entirely happy with the care you’re getting from your clinic it’s your right to be transferred to a better one.

From what I remember, they kind of tensed up and glazed over, looking at us as if we were slightly mad. Of course they did. They were still in that appallingly confusing early phase when you’ve been put in charge of managing a chronic condition and you’ve no idea what the hell to do about it. Their only source of information was their clinic and now here were these people they’d never met before subtly suggesting that their clinic was getting it all wrong. Who were they going to believe – trained medical professionals or a family with no qualifications?

There’s an insidiously cynical expression that’s come into use in politics and the workplace in the last few years – managing expectations. The idea is that if somebody complains about something that your organisation has done, it doesn’t mean there’s a problem with anything you’re doing, it just means they’re expecting too much of you. So don’t tackle the problem, just manage their expectations. Make them think you’re going to be rubbish, and then they won’t complain if you turn out to be rubbish. But nobody had to manage the expectations of this family. They trusted their clinic because they had nothing else to compare it with, and as a result their expectations were set pretty low.

A couple of months ago I blogged about what a great institution the NHS is, and how lucky we are to have it, especially if we’re affected by diabetes. I also argued that it wasn’t perfect and that one way to make it better is to fight for the best care we can get. The problem is that, like this family, many people have nothing to compare their diabetes clinic with, so they have no idea whether they’re getting good care or not. I think we need a campaign to manage expectations – but upward instead of downward. We need people affected by diabetes to know what good care is and to demand it from their local clinic – or move to another one.

With this in mind, my good friend Kate Fazakerley has set up a website which lists every children’s diabetes clinic in the country and allows the people who use them to leave comments about them and rate them using a five star rating system:

Children Diabetes Clinics.

So if you’re new to diabetes, it might be worth checking out what other people have to say about your clinic. If it’s not good, you might want to start questioning the care you’re getting, or maybe start looking around for a better clinic using other users’ feedback to guide you. And of course, you can also leave your own feedback about your clinic – good or bad – and thus help other people get an idea of where to get the best care.

For the record, our current clinic has an average rating of five stars and one user describes it as, ‘Absolutely brilliant – the way all clinics should be.’ Our old clinic, on the other hand, hasn’t been rated by anyone yet. I feel it’s about time I did something to manage expectations of people in this area upwards, so I’m about to log on and leave some feedback. I feel a one star rating coming on.

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We have always been lucky with the care for our son. The team at North Staffs were fantastic from day one. A wide variety of support over all the aspects of care needed. Referrals made to external support as well, which has been invaluable to the care for the whole person not just a redundant pancreas! Are there national standards for diabetes services? As a parent you do have to fight your corner, which is a shame in many ways. I always wonder what happens to the children who do not have parents who can stand up for themselves…