Thursday 12 January 2023

You can't always get what you want

When I first started posting my thoughts as a blog, back in 2015, I started using song titles - or occasionally lines from song lyrics - as the title for each post. It happened almost by accident when I was writing my very first post, about the then new and very rare FreeStyle Libre blood glucose monitoring device: the words of a song came into my head, and I thought it would make a good title. That post - entitled What's Going On? - is still there, now of course very outdated, but in a very good way.

These days, it's often the other way round: a title or line comes into my brain as a result of something that's happening in the world, and thoughts start to swirl around in such a way that I end up expressing them in writing and usually publishing them on my little corner of the internet. Read on to find out how this title - You can't always get what you want - became a post.

My blog has always been about more than just diabetes, but the condition with which I live, and which has brought me so many friends, opportunities and experiences, remains a recurring theme, not least because the world of diabetes care and treatment has moved on so much over those six years. There's always much to talk about.

This week brought the announcement by NICE of proposed guidelines and a consultation on the future availability of closed loop systems for people living with Type One diabetes in England. It stimulated a frenzy of comment and opinion, ranging from excitement and gratitude to anger and resentment and all stops in between. Once again, I found myself somewhere between amused and dismayed by the speed with which people felt it necessary to broadcast their views to the online world. Not least when the announcement was of proposals, not policy, with an invitation to comment. An invitation to comment: online, privately, and thoughtfully, having read and considered the proposals.

We live in an age of instant and therefore necessarily less than reflective opinion, driven by the platform of social media where so many strive to be heard. By the time I'd read just a few of the torrent of responses, I had already started to feel that I must be a freakish loner in wanting to give the proposals some thought. Until I remembered that those expressing the most strident and immediate views are almost by definition a minority, and that tens of thousands of others are probably unaware of the announcement or too busy living their lives to be able to join the chorus of opinion. 

It’s the negativity that really gets me down. We've been here before, of course: 

I remember a taxi ride back into Central London in September 2017, after being interviewed live on Sky News on the day that FreeStyle Libre was added to the NHS tariff, and reading through dozens of negative comments about that decision, spiced with suggestions that the likes of me or indeed Partha Kar were paid by Abbott to promote this product. Most comments boiled down to “Yes, but what about...”, overlooking the universal truth that all progress, all change for the better, comes in stages, not overnight. Partha repeatedly used the “tip of the spear” analogy to restate his point that this was a marathon not a sprint, and that progress and evidence would generate further change, price reductions and hence wider benefit.

Then this time last year, we had a similar furore over the news that FreeStyle Libre 3 would not be as readily prescribed as Libre 2. Again, the misplaced sense of entitlement, and the consequent rage, was baffling.

After all, we're only 7 years on from the arrival of Libre, and progress has indeed been remarkable. Flash or CGM is now, with one or two shameful exceptions, the norm for people living with T1D in the UK. It has taken just five years from a fortunate few paying £100 a month for Libre 1 to everyone with T1D getting at least Libre 2 or other devices like Dexcom or Libre 3 according to need and at no cost at all to the patient.

So the other day, these wise words, from the Rolling Stones, came into my head:-

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometime you'll find
You get what you need

Check out the song here - it was actually the B-side of their iconic 1969 hit Honky Tonk Women, but has achieved far greater fame and acclaim over the subsequent half century.

Why these words? Because we now have the prospect of pump with closed loop connection to CGM - a de facto artificial pancreas - for those who need and want it. Do we all want it? Possibly, but not necessarily. Do we all need it? Arguably, but at what cost relative to other demands on diabetes care and the NHS in general? Another huge step forward in diabetes care and treatment, but one that comes with a cost, and therefore with decisions to be made regarding who gets it and who doesn't. Hence the frenzy of excitement this week, but also a disappointing amount of negativity.

Surely, before we all start with the “What abouts” we should pause to reflect, and to keep a sense of proportion, fairness and context to this news. Loop and CGM for more than a favoured few is wonderful news, to be welcomed, celebrated and shared, not least by those who have lived through years of far more primitive methods of insulin delivery and blood glucose monitoring. But we must, now more than ever, remember that this massive improvement to care has a cost, a cost to us all as taxpayers, and that this cost must compete with other growing demands on NHS funds. Assessments of need and decisions, sometimes hard decisions, will have to be made, both theoretically and then in practice: there will be winners and losers. We must surely place need before want, not the other way round.

Take me: I have an Hba1c well below the proposed threshold of 8. I am doing fine on MDI, not least because I have the luxury of being retired and therefore having the time and headspace to devote to keeping my levels in reasonable range.  So whilst I might want management of my diabetes to be easier and more automated, do I need it? Right now, no, I don't, and I'd happily see my £6k of closed loop funding go into the pot to improve diabetes education courses, to increase HCP pay or to speed up cancer diagnosis.
I can think of many others living with diabetes whose need is greater than mine. Busy working people with no time to constantly check levels and correct; pregnant women and nursing mothers with 1001 other stresses and strains on mind and body; children and teenagers with raging hormones and lives to live, fun to be had and worries to be addressed; older people with additional mental or physical disabilities or challenges on top of diabetes. The list goes on. I even happen to think that the need of basic flash monitoring for many living with Type Two is greater than my need for a pump and a loop. If we think hard and selflessly, and with due regard to financial realities, the need of others may well be greater than our own want. 

So before I start sabotaging my own blood sugar levels in order to raise my Hba1c to above 8, so as to qualify for a pump, I shall gladly stand back, rejoice in the progress of recent years, thank those who have driven it, and remember that as so often in life, what we need is often considerably less than what we want.

Jagger and Richards wrote some very wise words as well as some of the greatest ever riffs....

1 comment:

  1. Thanks for this well considered post Adrian. I'd add that the price published in the press is perhaps not representative of all the available systems, as there are already options amongst the alternatives that are much lower cost than that, but hey ho. Some manufacturers want their pound of flesh....


Go Your Own Way

  I developed Type One Diabetes just over 26 years ago, in December 1997. I have often said that it was a good moment to join that “club tha...