I got as far as skimming Report 1 'Care Processes and Treatment Targets' (check out that horrendous BG testing technique on the cover folks... right into the nerve-ending-packed softness of the fingertip! Use the sides people use the sides) before one of the stats just jumped out and hit me between the eyes.
Way less than half of all Type 1s are getting the routine healthcare checks they should.
40%. Forty. Percent.
My daughter reliably informs me that in GCSE terms that comes out as an 'E'.
The actual figure is quoted as 41.3% and it has been falling since 2010. That's almost a quarter of a million people living with type 1 diabetes who are missing even the most basic annual checks to help them keep on track.
When it comes to actively supporting people to manage their condition effectively by offering them some sort of structured education course the stats are even more eyewatering. Less that 4% of people being offered a place on a course. A measly 1% actually make it onto the courses. There's a lengthy rant right there... but that will have to wait for another day.
Diabetes UK lists 15 healthcare essentials that people with diabetes should get each year:
- Get your HbA1c measured at least once a year
- Have your blood pressure measured and recorded at least once a year
- Have your blood fats (such as cholesterol) measured every year
- Have your eyes screened for signs of retinopathy every year*
- Have your feet checked
- Have your kidney function monitored annually
- Have your urine tested for protein each year
- Have your weight checked
- Get support if you are a smoker
- Receive care planning to meet your individual needs
- Attend an education course to help you understand and manage your diabetes
- Receive care from a specialist paediatric team if you are a child or young person
- Receive high quality care if admitted to hospital
- Get information and specialist care if you are planning to have a baby
- See specialist diabetes healthcare professionals to help you manage your diabetes
- Get emotional and psychological support
* eye screening is now handled separately and bizarrely is no longer included in the NDA
The ones in bold are the checks that are covered by the NDA. Eight or nine routine measures to check that nothing nasty is lurking, and to be able to do something about it if things are going awry. These checks are not about passing or failing - they are about protecting us.
So what is going on?
Is it just people not showing up?
Is it that the appointments are not available at convenient times?
Is it that people simply do not *know* that these simple routine checks are so very important?
Is it a lack of resources?
Are clinics not helping patients?
Or are patients not helping themselves?
My guess is that it is *all* of those things.
I wrote once before about the exponential rise in the number of appointments that were involved in my 'annual review' and the situation is much the same. Decentralised care may work well as a buzz word, but patients have ended up with 4 or 5 appointments instead of 1, which makes the whole process much more of a faff.
But here's the harsh truth.
Faff or not - if you are living with type 1 diabetes you need to do whatever you can to make sure that you get those checks.
They are not for the benefit of the doctors. They are not for the purposes of making someone's spreadsheet look snazzier. They are for YOU. We live in a world where people struggle to get access to any insulin at all - let alone the particular type and/or colour of pen that they prefer. The very least we can do is turn up for (free!) appointments designed to help us to make it through life with our feet on and our eyes working.
It absolutely appalls me that the figures are what they are. And the people most likely to suffer as a result are not the clinics or doctors, but the very people who are not getting checked.
Yes I'm sure some clinics could help with more flexible appointment times. Some employers might need to be reminded that under the DDA (or whatever it is called this week) they need to make 'reasonable adjustments' to support employees with diabetes in keeping these kind of routine healthcare appointments.
But at the end of the day we have to find ways of attending.
Perhaps it would be easier if diabetes was a bit more like prawns.
After 25-odd years I am very glad that diabetes is often a relatively slow-moving adversary. But perhaps part of the problem with all those thousands of appointments from the patient perspective is that diabetes is not enough like prawns.
Perhaps it's not prawns for you. Maybe it's peanuts. Or yoghurt. Or fresh ravioli with ricotta.
When I was in my teens I had an absolutely delicious pub meal out while on holiday. I chose a local speciality of prawns in their shells. They were fabulous. On the way home in the car I began to feel a little uneasy. I used to suffer a little with motion-sickness so put it down to that. I still felt a bit odd and over-full at bedtime. But then... we had eaten rather a lot. I woke with a start in the early hours and knew instantly that things were not right. Not right at all. Somehow I managed to stumble, in the dark, with excruciating urgency to the tiny the bathroom where I remained until the following morning in a wretched, heaving heap.
I still struggle to look at a prawn.
The trouble is there is no such immediate come-back for a missed appointment here or there. Eating a big ole serving of 'not enough time at the moment' prawns in 'missed appointment' sauce doesn't bring me out in a sweat just thinking about it. But the results of missing those checks are potentially even more catastrophic.
80% of the NHS budget that is spent on diabetes goes on treating complications. We owe it to ourselves to do what we can to change that statistic. To beat diabetes one day at a time. To keep ourselves well.
Making sure we get all our routine healthcare checks is a tiny step in the right direction.