Let's say you have diabetes. Or someone you care about or look after has diabetes. How do you know the person looking after you is trained in it? To be more accurate, if you are referred to a hospital team, how do you know they are any good? Assume? Accept that it's the only place around to go to? Challenge your GP? Go online to find out? And to think about it, is there any data or information out there at all?
So let me begin with an acknowledgement to a gentleman called Jens Berkenheim. A mountain of a man but with the most pleasant personality ever- with a grin forever etched on his face. I can't quite recall how we met but I haven't forgotten his sheer energy and desire to improve type 1 diabetes care. He simply wanted to know the questions I put above. And he tried...I could only support him in those days as a clinician from Portsmouth verbally and there has always been a lingering frustration that I couldn't do more. And frankly, Jens met many a closed door- who wants to share their data with a member of the public? Blasphemy.
Many an hour of mine I have spent listening to old wise heads muttering about the care in primary care in diabetes...perhaps the biggest irony sits in the fact that if you want, you can find out a whole lot about GP surgeries and their diabetes care. You can criticise them as much as you want, but at least the data is there...transparent. On the other hand, we specialists in diabetes have....hold your breath..ah yes..not much. Is that because it's presumed we are just good? Or are we not sure enough of our data to be transparent enough?
Now I know a lot of diabetes outcomes are all about "working together" and most issues are of the "system". If someone has an amputation, the pendulum swings from "GPs don't check feet" to "hospitals don't have clinics"....but you know what? There are actually a few things which hospitals are accountable for- solely. So why not measure it? Is it because it could become a beating stick or could it be a chance to improve variation, learn from other areas etc?
Let me also digress slightly at this stage and say that my other specialty endocrinology isn't free from this either. Here's a simple example- most hospitals see pituitary patients...do you have any idea of cure rates for acromegaly based on hospital? You could and you should but...you don't. Patient choice is such a beautifully crafted word indeed
Anyway, back to diabetes. Let's take inpatient diabetes care. Should a patient with diabetes know how safe or not their hospital is? Data is there...yet not public. Why not? If I had type 1 diabetes, I would like to know what are my chances of getting my insulin when I am ill and not well enough to self administer.About 1 in 25 patients with Type 1 diabetes go into DKA while in hospitals, you bet I would want to know how my local hospital is doing. And if that data is public, would it drive the hospital to ensure it is doing all it is can to reduce it- or even get to mean if it's an outlier?
Then there is the issue of pumps and technology. Again, if I had type 1 diabetes and wanted a pump, I would like to know whether my hospital provides it and if they do, whether there are trained people there. Wouldn't you? I wouldn't want anyone experimenting on me- neither would I want anyone who has done a weekend course in Kings or Bournemouth doing it as part of their 5 year training.....so why not make that transparent too?
2 simple examples...but you can see why the time is right for diabetes centres to be "benchmarked". Whether it be the simple issue of patient choice, transparency, reducing variation or even to get to par with our primary care colleagues, the need is there. The key however is to ensure its seen as a tool for improvement not as something to wave a stick at. It's part of modern medicine that we should be brave enough as diabetes specialists to back ourselves, our training and be open enough to acknowledge poor care and work to improve it.
So with a thank you to Jens, the question to my diabetes Consultant colleagues is....are you ready for it?