I spent a lovely Saturday evening in a pub in Edinburgh with some of our readers. Amongst other things we chatted about local diabetes care.
Tim has a letter from the Chief Executive of NHS Lothian telling him that they deliver the best diabetes care in Scotland. Marvellous. When they deliver diabetes care that meets all the national guidelines they can have a gold star. Until then, being the best of a bad lot isn’t something to celebrate.
Around the table in the pub were three people on an 18 month pump waiting list, people who hadn’t even been on a DAFNE course, and a terrifying anecdote I really hope isn’t true about there being an 11 year wait for access to DAFNE training in Glasgow. An eleven year wait for basic education to help you live with a serious chronic disease? It’d surely be easier just to chop off your own feet immediately and give up.
I travelled home on Sunday night pondering what could be done to improve the situation. I’m a big fan of the NHS but it works best when people like us drive it to deliver. I’m hoping those people sat around the table on Saturday night will be going to speak to their NHS healthcare funders to encourage them to start delivering.
Then, like an apparition, I saw this on the interweb “New Edinburgh diabetes lab brings promise” . Aha I thought, they’ve cracked it. They’ve worked out how to deliver excellent diabetes services at an affordable cost to the Scottish masses. Soon my fellow drinkers will be accessing excellent care rather than whiling away their years on waiting lists.
This doesn’t happen often, but I was wrong. Edinburgh is getting a new lab to provide “revolutionary diabetes treatment for sufferers of type 1”. This life changing place will be the Scottish Islet Isolation Laboratory.
Marvellous stuff. I’ve nothing against progress and I’m sure one day islets may/may not deliver some/lots of benefit to some/all of us living with diabetes.
I do wonder though what makes you prioritise something like a new islet cell lab over delivering great healthcare to people struggling to live with diabetes today? Would it be cynical of me to suggest that islets are just a little bit sexier than delivering basic education and healthcare? That perhaps “I cured diabetes” looks better on your CV than “I helped Rachel manage her HbA1c and live a long, healthy life”?
Of course we need investment in future treatments for diabetes, but we also need to quickly and effectively use the proven treatments we already have. Forgive me if I’m not bouncing off the walls with excitement over this new lab. I may be dull but seeing people being given the help they need today to live long, healthy, happy lives with diabetes is what really floats my boat.
I couldn’t agree more Alison – the main priority should be to get the majority of people set up with pretty good, basic care (basic, by my definition, includes crazy things like pumps, CGM, short waiting lists and quick access to expert DSNs) in the majority of cases.
Once a satisfactory level of care has been achieved then by all means spend some money on massaging the egos of academic researchers who want explore some esoteric area of research.
I completely agree with you Alison! I moved out of Glasgow three years ago, and at the time I had massive problems with my control, I was on two injections of mixtard (!) a day, and MDI was never suggested, let alone a DAFNE course! I moved to Cambridge and I’ve now been on a DAFNE course, got my HbA1c down to 6.9% and I’m getting a pump next month. The difference in the level of care is staggering, and I find it really worrying that so many diabetics aren’t getting the care and support they need to live long healthy lives with this disease.
Also, that article is very odd! It makes it sound as though most people with type 1 control through diet and exercise, and the doctor who says “Islet isolation is a new and highly skilled technique which can prove life-saving for some patients who are unaware of the level of sugar in their blood…” Sorry? I’m not entirely sure what he means by that…
@Angie It sounds like it was a wise move to head south Angie. I agree the article is odd – I was going to write about that rather bizarre quote but the post was turning into a bit of an epic so I cut it!
Be cynical. Seems to be happening in many countries.
If one of yours figures it out though (any country will before the US), let me know. I’m moving in. 😉
@Angie Two injections of mixtard a day and no MDI??? Was Fred Banting still working at Glasgow three years ago – that’s positively medieval diabetes ‘care’.
@Tim
There are paediatric clinics out there who still put children onto 2 injections of mixtard a day because “It is convenient for the school”. They don’t want to inconvenience the teachers, and don’t appear to worry about the consequences of the childs health. Can you believe it?
What a weird article (the Diabetes.co.uk one, not yours Alison!). It reads like an April Fool spoof… And Scottish Islet Isolation Laboratory? Stick a ‘y’ on the end and you can just about (spelling aside) get away with a more appropriate acronym. I’ll buy a beer at the next social for the best word beginning with a ‘y’ that could fit on the end. Mixtard takes me back – I can’t believe it’s still being used out there…
hmmm. I too have never been on a DAFNE course in 14 years of having diabetes. It really blows my mind sometimes. MDIS were only suggested to me when i was er…14 years old and still in the kids clinic, and then I was on two injections of mixtard a day too.
Alison – you will be pleased to know I have just done the letter to my MSP and will revise it tomorrow to send it to the PCT. My annual review is on Thurs. so I will try and find out who the pump reps are then to be able to contact them too.
@Rachel Hurrah, nice one Rachel. Good luck with it all, keep pushing until you get what you need.
@Tim When I first saw my doctor in Cambridge, he asked what kind of insulin I was on. When I told him it was mixtard, he replied “how quaint!”
@Rachel I’ve got the cards of most of the Scottish pump reps – I’ll drop you an email with their details.
Ha ha ha! Massive understatement!
@Alison – letters now went to MSP, Nicola Sturgeon and head of the Lothians PCT.
@Rachel ‘atta girl! Good luck Rachel, make sure you chase them if you don’t get a response within a reasonable time.
@Rachel Cool! Let us know how you get on.