Please Don't Let Me Be Misunderstood: keeping it simple

I’m just a soul whose intentions are good: so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having a dig at any group or individual, although I would fully understand if anyone felt that way.

I don’t do tribalism, and I think it is one of the saddest aspects of the contemporary world, not least here in the UK, that we seem to have become increasingly polarised and tribal. I feel very strongly about the political issues with which our country is struggling right now (autumn 2018), but I recognise and understand that others feel equally strongly the other way. And I still feel that in almost any situation, what unites is stronger than what divides, especially if you take the time to sit down, listen and empathise.

Such is the situation with diabetes. There are times when attitudes to diabetes can seem very “tribal”, and in the years in which I have connected with other people with diabetes online, I have seen many instances where there are clear divisions in how people feel about their condition and deal with it. Such divisions are often implicit and overlooked, but on occasions they come to the surface and result in the same sort of hostility and tribalism that afflicts politics, religion, sport, fashion - everything, in fact.

So why the disclaimer and long preamble? Well it’s because this post seeks to speak up for those living with diabetes who choose, or indeed are compelled by circumstances, to manage their condition without any technology beyond insulin pens and a device with which to monitor their blood glucose level. People for whom an insulin pump, let alone one combined with a DIY application to create some sort of artificial pancreas, is either an unreachable dream or simply something they don’t want or need.

I am, with one important exception (more of that later), one such person: I read the admirably enthusiastic and learned tweets and posts about diabetes tech with a paradoxical mixture of fascination and indifference. I am fascinated by what can be done, by what others have achieved through their own enthusiasm and expertise, yet not interested in embracing it for myself. I am on multiple daily insulin injections, always have been, and whilst I would “never say never”, it is hard to envisage a situation in which I would ever be offered, let alone accept, an insulin pump.

My diabetes story is largely one of being “perfectly well, thank you” - to the extent that for the first fifteen years or so of living with diabetes, I largely downplayed it and did little to connect with the world of diabetes beyond my own immediate needs. However, once I started to talk to and meet with others living with diabetes, my eyes were opened to how things could perhaps be different, and it suddenly seemed to me as if everybody else was either on a pump or trying to get one. Having become friends, online and real life, with other Type Ones from all over the UK, Europe and indeed the world, I have at times felt quite the dia-luddite in a group of pumpers, watching in awe as my friends discreetly tweak controls, check numbers and change cannulas. Some of the conversations I see or hear leave my head spinning, and when I recently saw the fabulously comprehensive online dictionary of diabetes technology, I realised just how little of it is of any relevance or even interest to me.

But therein lies the reason for my writing this post: I sometimes feel that the very fact that there is so much to discuss and enthuse about in the world of pumps, CGMs, looping and APS means that those of us who are happy and well with injections just sit quietly in the corner of the dia-room feeling left out, stupid, or both. We even feel perhaps a little guilty that we can’t be bothered (for that is in many ways how I feel) with anything more than a couple of pens, a monitoring device and a basic knowledge of how food and exercise affect insulin requirement.

So what is the exception to which I referred earlier? Well of course, it’s my enthusiasm for something that can tell me more than a snapshot of my blood glucose level, obtained at the cost of some pain and inconvenience. And for me, that is, of course, the FreeStyle Libre flash glucose monitoring system.

I have said this in a previous post, but I well remember at the first real-world meet-up of people with diabetes (#PWDC15) when Lis Warren, a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. She said that CGM was the one thing that she would have been prepared to “mortgage her house” to get her hands on. Now a lot has changed since 2015, most notably with the success of Abbott’s flash monitoring device leading to its admission to the NHS tariff, but I think that there is an important point to be made here, particularly since my own enthusiasm for Libre might seem to be at odds with a post which appears to eschew diabetes technology.

My point is this: there are many who have criticised the Libre and questioned its admission to the NHS tariff, citing inaccuracy compared to “true” CGM, and its lack of alarms (which will to an extent be addressed by the forthcoming Libre 2), but to me, this is precisely the point. FreeStyle Libre is a good fit for my  ”keep it simple” approach to diabetes management. Yes, it is indeed a relatively low-tech piece of tech, with self-evident limitations, and that is why it has been adopted, relatively quickly, by our cash-strapped NHS. I can’t afford a “true” CGM, and neither can the NHS.

So what am I saying? Well I guess it’s me being my usual equivocal self. I want to speak up for those who manage diabetes the “old fashioned” way, using injections, and in the UK at least that is still the vast majority of Type Ones. Let's not forget that, particularly as the online world of #GBDOC might suggest otherwise. However, I also want to stress that even for those of us who embrace a low-tech approach, there is room and need for a little technology in our lives. But not so much that it takes over our lives.  In the end, I’m really not very interested in diabetes.

There, I’ve said it: but please, Don’t Let Me Be Misunderstood. There should be room for technophiles as well as technophobes: pumpers, loopers, prickers, injectors and even flashers (!)  have their place in the world of diabetes management, and those who can afford the cost and time have a right to choose that way for themselves or indeed for their children. But those who prefer to keep it simple have a right not to feel left out or guilty.

We all have our own way of dealing with this complex and demanding condition.

I Will Survive - but I'd like a bit of help, please.

Cure for Type One Diabetes? “If there’s a cure for this, I don’t want it” sang Diana Ross back in 1976.

Well of course, if someone offered any of us living with Type One Diabetes a cure that was permanent and free from nastier long-term side effects, we’d grab it with both hands. There’s a running joke among people with Type One that a cure is “ten years away” - I remember hearing this when I was diagnosed back in 1997 - and for a while I kidded myself that it might be true. I remember my late mother saying she would gladly use her pension pot to help fund any treatment that would cure me, and whilst I politely thanked her, I soon realised that her life savings were not in any danger.

“Ten years away” isn’t true, never was and possibly never will be. I’m fully reconciled to seeing out my time on this earth in the company of my unwanted friend T1D. I hope I’ve got thirty odd years left, and it would be great to make it to 50 years, especially having been diagnosed as an adult. That’s my life goal, but it will require me to see my 90^th birthday and a little more for that to happen.

But if that sounds negative and defeatist, it isn’t. It’s just realistic, and I have to say that I had a “light bulb moment” after attending the wonderful Type One - Rise of the Machines event in London last Saturday, 24^th February 2018. 

Quick shout out to Partha Kar for making it happen, all the speakers, and Ben Moody and the team at TechUK for hosting. My light bulb moment is nothing particularly new, but rather just a clarity of focus about the way forward for managing Type One. Let me explain:

Rise of the Machines was all about the use of technology in managing - not defeating - Type One Diabetes. It was an inspirational day: we heard from some of the medical technology companies about their work in developing the gadgets and gizmos such as insulin pumps, CGMs and Flash Glucose monitors which have done much to improve the lives of those lucky enough to have access to them, and they deserve our applause and recognition for the work that they have done and continue to do to make our lives better. I am lucky to live in the era in which I do, and in the country in which I do. Then we heard from the big two charities, Diabetes UK and JDRF, who do so much to raise the funds required to fund technical and medical developments.

But we also heard from some of the stars of the world of #WeAreNotWaiting - those highly motivated people with diabetes, or parents of children with diabetes, who have used their skills in ICT, especially coding, to take what the medical technology companies have done and move it onwards in a way and at a speed that could not be achieved in the - rightly - cautious and regulated world of corporate medical technology.

Whilst the work of the #WeAreNotWaiting people on closed loops, artificial pancreases and the like is not for me and unlikely to be (it depends as a starting point on the use of insulin pump therapy, for which I am unlikely to be eligible in the foreseeable future), it shows what can be done and points the way to a longer-term future in which Type One Diabetes will be artificially managed to the extent that it can be a mere inconvenience rather than the full-time occupation that it all too often seems to be.

And therein lies the crux of the matter, and there are encouraging signs everywhere that people with diabetes, healthcare professionals and the scientific research community are starting to recognise it.

Diabetes is a condition, not a disease. Type One will not be “cured” in the foreseeable future. The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on.

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition, especially one like Type One Diabetes which is not degenerative, requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability cite its cost, yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a consultant who spoke at the Rise of the Machines event. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access of people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??