Looking After Number One?

Readers of my blog will know that all my posts are given song titles. So for this one, I browsed through my Irish songs playlist looking for a suitable title. Amidst some gems ranging from Thin Lizzy to Dana, I was reminded of the exhilarating emergence of the Boomtown Rats in the summer of 1977, adding sophistication to the raw energy of punk which had ruffled so many feathers over the previous year. Long before he became a fêted anti-poverty campaigner, Bob Geldof encapsulated the zeitgeist of that summer with an anthem to self-interest - Looking after Number One. Click on the link and discover it or remind yourself. Great song, but not my values, nor those of Mr Geldof in later years. Let me explain in these reflections on DX Dublin, the fourth meet-up of European diabetes influencers organised and sponsored by Abbott healthcare.

Much of the content of these conferences is only obliquely related to diabetes, but it was during a session on the second day led by two senior figures from Abbott Diabetes Care that I was reminded how much has changed in the four years since I started talking about diabetes online, let alone in the 20+ years that I have lived with the condition.

We were presented with some statistics about the take-up of FreeStyle Libre flash glucose monitoring system around the world which make clear how rapid the spread of this piece of technology has been. A glance at diabetes social media over the past year shows how access to technology remains a dominant issue for those who live with the condition, and the statistics on the spread and growth of access to flash monitoring throughout the world makes clear what a real appetite and need there is for something more sophisticated than just pricking your finger as and when possible and convenient.

FreeStyle Libre has its critics, and like any technology, it’s not perfect and not for everybody. But I well remember at the first real-world meet-up of people with diabetes (#PWDC15 at Nottingham) when Lis Warren, already by then 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. This was shortly after the Libre had been launched, and at the time, a very small group of people in the UK and a few other European countries were using it. 

"Proper” CGM was - and still is - an expensive luxury beyond the means of most ordinary people and certainly beyond the means of any publically funded healthcare system. Libre, however, has quickly proved itself to be a pragmatic compromise: a discreet and reliable way for many to keep tabs on their blood sugar levels without being pestered by alarms, at a cost which is affordable to some self-funders, and more importantly affordable enough to be seriously considered for public funding. Four years on, the dream of non-invasive and continuous monitoring “for the many, not the few” is still far from reality, but a good deal closer.

But the most interesting point made by Jared Watkin, Senior Vice-President of Diabetes Care at Abbott, was that the FreeStyle Libre was the first significant new diabetes tech product launch to have taken place in the full and unforgiving glare of the social media era. As such, the progress of the device, the praise, the reviews, the criticisms, have all taken place largely in the unregulated, unpredictable and uncontrollable world of Facebook, Twitter and Instagram. Previous new devices and therapies were perhaps advertised in specialist publications, marketed to healthcare professionals by sales reps, but with patients largely dependent on others for knowledge and access to advances in their care.

Not for the first time, this makes me feel lucky to be (just) young enough to be part of this phenomenon. Jared and his colleagues reminded us of the massive cultural change that companies such as Abbott have had to adjust to, with their product and the customer support for it subject to constant review and comment in a manner impossible to imagine even a decade ago.

I am very fortunate to be one of those members of the patient community who are asked by companies like Abbott to play a (very small) part in this process. There are voices in the online community who criticise those of us who are “affiliated” to the healthcare industry, and it is easy to make cheap accusations that we are the undeserving recipients of benefits and sweeteners from an industry only too keen to cultivate a group who will sing their praises online.

In truth, those who take part in events such as the DX series organised by Abbott are in my experience interested in only one thing, and that is to attempt to represent the diabetes patient voice in their own countries. And to allow such people the chance to meet together and compare and contrast experiences is of huge value not so much to them as individuals, but to the communities of which they are a part. 

My favourite moment at DXDublin was during a session on patient advocacy when I found myself in a small group discussion with Dimitris from Greece, Weronika from Poland, Bianca from Brazil and Melanie from Wales. How else could we five have ever found ourselves around the same table discussing living with diabetes in our very differing circumstances? The value to the communities in which we live is difficult to prove, impossible to quantify, but very real in my opinion.

An Englishman, a Greek, a Pole, a Brazilian and a Welshwoman

Yes, we had lots of fun and laughter over the weekend, yes I loved spending time with some who are already good friends and others whom I was meeting for the first time, but the engagement and commitment shown by all to diabetes advocacy in their home countries is truly awe-inspiring. 

Expert patients from across Europe

The weekend’s programme included valuable sessions from experts in communications and advocacy - for me the most memorable being the hugely impressive Tiernan Brady, one of the most prominent LGBTI rights and equality campaigners in the world. His humble and good humoured but powerful session on how he helped secure the epoch-making votes in favour of gay marriage in Ireland and Australia was truly inspirational for me and many others in the room, and taught us much about the art of persuading and representing in our hyper-connected world.

#DXDublin was a wonderful experience, an opportunity for which I am truly grateful, and I wish to thank all those who worked so hard to put together and deliver the programme, and also those who took part. It is very hard to resist the oft-stated conclusion, surrounded as I was by people with Type One from all over Europe and beyond, all of them significantly younger than me, that people with diabetes are almost invariably outward-looking, generous-minded and sensitive individuals.

Diabuddies from across Europe and beyond

So why the title? Let's say that far from Looking after Number One, DX helps us to make a better job of Looking after Type One, not just for ourselves, but also for others.

Disclaimer: I was invited to DX Dublin by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

Ride My SeeSaw

There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.

I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.

In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.

But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.

In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.

So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?

Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be.  It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.

Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.

This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.

But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.

So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on my blood glucose, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.

And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:

And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:

Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreestyleLibre.  And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.

But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.