Last November, on world diabetes day actually, NHS England announced its decision to end the postcode lottery access to the Freestyle Libre and mandate the remaining few areas in England to fund FreeStyle Libre Flash glucose monitoring system for eligible people with type 1 diabetes. BRAVO!
Since the Flash glucose monitor, the Freestyle Libre was launched in the UK in 2014 I have been watching, following and learning from all that the NHS, Diabetes UK and JDRF UK have done to make sure this revolutionary piece of diabetes technology ends up in the hands of many people with diabetes and not just those who can afford it.
In particular, the NHS England diabetes clinical lead, Dr Partha Kar and is someone I follow intently on twitter. Follow him on @parthaskar He wrote this blog post detailing the journey to the point where the NHS decided to issue the mandate here and it makes for a very interesting read and lots to learn from.
LESSONS LEARNED
Listening
The first thing I noticed is that Diabetes UK and JDRF UK along with Dr Kar were listening to the unanimous voices of people with diabetes who said that this device made a difference. Not only were they listening, they were also part of the conversation, especially on social media. Social listening is a huge tool for organizations to hear what people are talking. Social Media isn’t just for promoting yourself.
They trusted the testimonials from people with diabetes rather than wait for countless clinical studies to confirm it.
Used the Momentum
The diabetes organizations along with diabetes healthcare professionals, including clinicians, realized very quickly that Flash glucose monitoring was actually going to improve the lives of people with diabetes dramatically.
Dr. Kar describes the Libre as a “paradigm shift in glucose monitoring-opening the world of non invasive glucose monitoring to the many.”
He also says, and I love this bit, “If it had been a product called Hallelujah, it would have had the same backing.”
They realized that the Flash glucose monitor was a device that would help many people with diabetes unlike other diabetes technology where the jury is still out on its benefits.
People Power
“This is where the public exposure has been useful. It has given the patients a voice, it's shown starkly the discrepancy between the technology bubble we think we are entering, the innovation we so champion...and the reality on the ground.
The public focus brought media into play, it brought MPs into play, it brought BMJ into play...and finally it had to crack, so it did.”
We are constantly being told that our voice, the voice of the person with diabetes is influential and persuasive and the NHS wasn’t paying lip service to that. They asked for help from the community. And they didn’t need to ask twice. The Irish voice was lost.
Seeing into the Future
“The NHS is proudly looking to the future, one that can’t be ignored any longer, that “In 4-5 years, non invasive technology will be the norm- and this was about the NHS joining the curve at par with other nations, not 4-5 years later- as normally happens with any technology”
“Joining the curve with other nations and not lagging behind as we currently are.”
The NHS saw itself as lagging behind other countries and Ireland is most definitely lagging behind the UK in our overall diabetes care so now we are down at the bottom.
I know we don’t have the manpower or the other resources needed to launch a media campaign to crack our Libre restrictions. Many members of the diabetes community did try, myself included, But, it wasn't coordinated. As volunteers, we weren’t sure what we were doing. We did not have a healthcare champion as our voice. And we did not have enough volunteers who could help do it.
But we’re not done! Roll on 23rd February for the first meeting of the diabetes advocacy forum-we’re getting organized.