Tuesday 3 October 2017

Birmingham Blues

Saturday’s DX2Birmingham event was an excellent opportunity to meet with other Type One bloggers, all of them already known to me as it happens, and to share some ideas and experiences, and most importantly, a chance to meet with Abbott leadership and hear more about the complex and ongoing process of widening access to the FreeStyleLibre in the UK.

I thoroughly enjoyed the day, but because there aren't many songs about Brum, ELO's Birmingham Blues will have to serve as my song-based title for this post.

The first part of the day was an enjoyable and interesting chance to discuss some ideas around supporting our lives with diabetes and helping others to do so.

After an icebreaker involving "speed dating" - but with people who were mainly already good friends - we had a session with some good tips and ideas from PR experts about how better to promote and spread our online writings which I hope to explore further in the future as and when time allows.

We had a good session working in small groups on ideas for spreading the word and supporting others through blogs, tweetchats etc. Given the recent turbulence surrounding GBDOC and the successful transition to shared hosting of the weekly tweetchat, it was interesting to share ideas on how that might be sustained and developed. It was most interesting to hear that a social media expert comment was well aware of the GBDOC and its recent difficulties, but also to hear him praise its continued existence under new collective management. It clearly stands as a fine example of peer support. I was sad that more of those who had been directly involved in keeping the tweetchat going weren’t there, and I share the view that attendance at an event like this could be more widely and transparently available. In the meantime I hope that my presence, and that of others, and our reporting back, are of some benefit:

A small group of which I was part discussed the idea of perhaps drawing in more guest hosts from outside the regular community, such as charities and special interest groups. This has already been done, of course, on the Access to Insulin issue, but other topics, notably the very topical diabulimia issue, might well be good material for involvement of people with specialist knowledge, either as hosts or joint hosts. Another idea was to have chats specifically for those associated with people with diabetes, most obviously friends, partners and parents. This was a successful element of the two PWDC conferences in 2015 and 2016 and would be very beneficial to those groups, especially if the actual #pwd agreed to stay away or just “lurk and learn” rather than take part.

Lis, Pippa and Tim - diabetes bloggers all

We also felt that there were significant issues for parents of children with diabetes who have used social media to support caring for their children through infancy, childhood and adolescence, and then face their own “transition”, as their children start to self-manage. Tweetchats just for parents might be useful in this respect.

The afternoon was largely taken with feedback and discussions about the FreeStyleLibre and its availability through the NHS. It is abundantly clear that those who work for Abbott are proud of their company in general and this product in particular, and are keen to hear from those who use and benefit from it.

A good summary of the discussion has already been posted by my good friend and fellow blogger Melanie Stephenson here:-

I will not replicate her good work other than to say that it is reassuring to know how much goes on behind the scenes involving Abbott themselves, diabetes charities, healthcare professionals, NHS administrators, and yes, volunteer people such as ourselves, to try to ensure the best outcome for the maximum number of people. 

Concerns regarding issues such as CCG policies, continued access to test strips as well as Libre sensors, unacceptably short use-by dates and replacement of faulty sensors were all aired and concerns noted. We shall see what happens.

Neil Harris of Abbott talking about developments with the FreeStyleLibre

The issue of acceptability of FreeStyleLibre and CGM as proof of fitness to drive is very much alive, and in all modesty I would say that I have been pleased to hear that both Abbott and Diabetes UK are using a simple case study that I did regarding use of FreeStyleLibre before driving as a significant part of their evidence to the DVLA. I may be criticised for my association with a healthcare company, but how else could I have made my voice heard, and by extension that of many others, on this matter?

The online diabetic community has not been the happiest of places to be at times this year, and as inevitably happens wherever two or three are gathered together for any length of time, differences and disagreements emerge.

There has always been a degree of suspicion about the way in which the healthcare industry develops relationships with those who use its products, and those who choose to respond to invitations from the likes of Abbott will inevitably look as if they are “in the pay” of a particular company, incurring at best the suspicion and at worst the resentment and hostility of those who prefer to remain independent. I was among those who felt the heat of such criticism before this event in Birmingham.

I would say two things:

Firstly, I have never actively sought invitations from Abbott or any other company. It was the other way round: I was an enthusiastic early user of FreeStyleLibre and as a result of publically expressing that enthusiasm, I was approached by Abbott.

Secondly, I have never been even asked, let alone pressurised, to say good things about Abbott or the FreeStyleLibre online or in print. I have said good things because my own experience makes me want to do so. I felt very strongly from the outset that the FreeStyleLibre was a life-changing support to me in managing my condition, and that it had the potential to do so for many others like me. Living in an area where diabetes care is very technophobic, and having only learned of the existence of FreeStyleLibre via social media, I wanted to spread the good word and perhaps help to ensure that it became a choice for more than just those with the ability to pay. That decision that I made over two years ago has led to some wonderful opportunities and connections which I have valued and appreciated, and I believe that in a very small way I have helped to spread the good word to those for whom it might be beneficial.

I have been critical when necessary, but as is my wont in all areas of my life, I work on the principle that if I have praise, I give it publically, but if I have criticism, I prefer if possible to do so in a more restrained, constructive and discreet manner. I post good reviews on things like Trip Adviser, but if I didn’t enjoy a place, I just say nothing, unless a restaurant, hotel or company gets something seriously wrong. In such cases, I tell them so directly, and if they fail to acknowledge or respond I reserve the right to make a public fuss.

I am under no illusions as to my own influence and importance in the area of diabetes care; they are minimal, but if a healthcare company chooses to involve me in their work, I am happy to help.

Disclaimer: I was invited to DX2Birmingham by Abbott Healthcare, who paid for all travel expenses for me and other delegates. Opinions on the FreeStyleLibre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.


Our day concluded with some of us staying for (self-funded!!) drinks at the wonderfully entertaining Aluna Cocktail Bar then a small group of us shared a (self-funded!!) evening meal at Café Rouge. I make no apologies whatsoever for enjoying the company and mutual support of some very dear friends with whom I have little in common except a medical condition. I only wish that more of them had been there. 

And no, we didn’t just talk about diabetes!


Fun and fellowship with diabuddies Ellie, Lydia, Lis and Nick

1 comment:

  1. Great piece Adrian, even more so wish I could have made it there now :(
    Nice to read all about it though


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...