Sunday, January 17, 2016

Talk T1

It really was a back of a fag packet idea. Honest. Just thought it maybe a good idea to get some folks together, folks who wanted to improve Type 1 diabetes care- and roll the dice. Much of my life has been about that- trying things..some work, some don't. So why not? Had a chat with Pratik and Emma..some co conspirators with whom many a plan had been hatched. Some of the most creative times I have had in my life was when I developed the Young Diabetologists Forum- and those 2 were always the first on my list when I had started to form a team...and what great times we had indeed!!

So here was another opportunity- and slowly the idea developed further..a list formed, names cropped up. Fast forward a few months- and a crispy evening in was fantastic to see the folks who made it all the way from around the country. Bar a few who couldn't due to other commitments, it pretty much had the who's who of Type 1 diabetes specialists- along with a fair few national leading lights. Setting the programme was pretty simple..Type 1 diabetes care isn't delivering what it could for why not try, in the world of vanguards etc to try and develop something with the patient in mind?

Lets face it..if we redesigned Type 1 diabetes care from scratch, we wouldn't do it as we have now. The system isn't fitted around the patient, flexibility isn't a key feature..instead the patient has to fit around the financial envelopes, priorities of individual organisations- rather than the NHS working as a whole to fit around the patient. It may sound incredibly glib- but the fact of the matter is that if I develop Type 1 diabetes, I can pretty much access the best possible care and technology due to my knowledge of the system, personal relations etc- while Jo Public has to depend on post code lottery.

So we tried. And I tell you what, I must admit to being pleasantly surprised. We had Sam Jones giving us an idea about Vanguards- and I wanted her there to share with folks that they do not need any permission to develop something fresh- they just had to think beyond the confines of traditional hierarchies and silos. Jonathan Valabhji, National Clinical Director Diabetes, highlighted the work he has been involved in- as well as the upcoming CCG scorecards on diabetes, the priorities sounded, inpatient, variations, foot care; Martin McShane pushed us to design care around the patient; May Ng showed us what paediatric care had done- and her frustration with transition; Pratik breathed fire about specialists themselves failing patients without appropriate training; Emma exhorted us to do better, gave a patient and HCP perspective of what we forget in our day to day lives...its not easy to live the life of a patient...while Chris Askew firmly placed Diabetes UKs support to initiatives to help care, offering help where required, outlining their plans for the future.
The evening ended...but the conversations continued over dinner and kept its focus on what needed to improve..a late finish was inevitable with a bar and some usual suspects..just felt like the old days- developing and working on something exciting!

The following day, we had the patient perspectives..Kevin sharing his views as a Diabetes Dad; Laura  outlining her journey, the role of peer support, Jens sharing the frustration at lack of transparency in the system, the inability to know who was trained to do Type 1 diabetes while Mike face us his thoughts on his involvement with the NICE Type 1 guidelines- why he thought it wasn't just utopia- why it was something to aspire to! Simon Heller and Fiona Campbell brought their experience as a adult and paediatrics specialist respectively- and called upon us all to do the right was simply inspirational stuff indeed.
The delegates further split into 4 groups, was given a case with a financial envelope- kindly designed by our local Commissioners to work on- they called up on the patients- and then each group had to present to a panel of Commissioners,Lynn and Jim along with a patient representative, Roz, their model of care

I won't go into details of the models proposed as will write them up separately but what was great to see was the different ideas coming through. There was no primary care bashing, little ask for more money- but a huge drive to work differently- work across the system, use technology, upskill others. No one had the magic answer- but between themselves, I think, if we pick the right ingredients, we might, just, have something there. More importantly, it felt they all had been given that permission to do whats right- away from the trappings of individual organisation wants.

The day and a half passed in a blur and before we knew, it had ended. The purpose was to get some clever people together, work with the patients and try to change the paradigm of care...all the while having a bit of fun. I hope each of the attendees found something to take away-which they would pursue further locally- this was something co-designed by patients and was already better than something designed by carers alone!

As the word cloud from tweets would suggest...the ethos..was spot on.

So thank you to all of you who have all been absolute legends- giving up your own weekend to answer a call for help. I appreciate that- and with great humility, I must add..I am very touched indeed. I hope we can take it further- and for the sake of patient care, hopefully, in the idyllic surroundings of Southampton, on a cold crispy morning in January 2016...history will tell us someday that we actually did something pretty special.

Amen to that.

(For a storify-ed version of the event- check this: …)

For a patient perspective: check this from Roz Davies!!


  1. As an active parent within the T1 Community I'm still astounded by the post code lottery. It's always disappointing to see that funding is not available for the very best technology, as a blogger I carried out a survey recently on the things that seem to impact HBA1C for children. The results were all very interesting, I compared Pumps vs Mdi, also the roll of CGM, but perhaps the biggest thing that I noticed was education plays a key roll. Over 300 parents participated in the survey from all over the UK the most amazing thing to see was the average hba1c across the board was 7.8% which you'll be aware is lower than the national average, I put this down to the fact that the one thing these parents had in common was they were all members of facebook support groups, these are people that are proactively trying to learn as much as they can to try and manage this condition....the cgm results were also very interesting...I strongly believe the NHS needs to look at funding these for more children in order to meet new NICE guidelines. Yes not all parents are capable of interpreting the data and using them to their full potential...however imagine what could be achieved if those parents who could, had the choice to use one.

    1. And education to use the cgm Andrea. I am self-taught on cgm, and it's become the reason why my daughter currently meets the NICE target. But I'm sure if I knew more about how to interpret the data and respond to it, I'd be able to achieve this without the levels of burnout I get periodically, and which I'm so worried will become my daughter's eventual burden.