The Big Interview – John Grumitt

John Grumitt is vice president of both the International Diabetes Federation and Diabetes UK and has also contributed through a national role with NHS England.

He has type 1 diabetes and leads a full and active lifestyle, completing numerous endurance cycling events. Here John talks to the DT about his experiences and the changes he has influenced as well as his new project Changing Health.

What’s the biggest challenge facing the diabetes community today?

Fragmentation. Providers don’t communicate effectively; we have a fear of data which Dame Fiona Caldicott called “profoundly unhelpful” nor do we share and adopt good practice, resulting in massive variation and waste.

I’ve heard the term “supported self management” banded around for years, yet only a tiny fraction of people actually benefit from it.

What’s the most challenging aspect of living with type 1 diabetes?

The downside of getting your dosage wrong, caused by a host of reasons.

What’s been your biggest achievement?

Having developed hypo-unawareness with devastating consequences, getting some of it back and having had no severe hypos for the last couple of years. For this I am enormously grateful to the skilful and dedicated team at King’s and to Professor Stephanie Amiel in particular. While going through all that, I also completed numerous silly challenges – such as the Styrkeproven 545km ride across Norway last summer – non-stop, which was pretty good going!

I am also very proud of my involvement in Diabetes UK. From being first elected as a trustee in 2003 to becoming vice president, it has been a great privilege and enormously rewarding: getting the improved governance in place was tough but has created great strength; seeing the income double, creating capacity to lobby more effectively and improve access to care; being able to persuade some great people to work for, and with, us and serve the board and finally, just being part of the ‘diabetes family’.

What is the IDF doing to lead improvements to diabetes care across the world?

The diabetes scorecard in which we mapped almost every service in the world proved to be a great catalyst for member associations to create change in local government policy and funding. The Atlas is a globally recognised tool. Initiatives such as the foot programme, alliances such as that with the Fred Hollows Foundation to massively increase access to retinal screening in the poorest countries, and of course the extraordinary Life for A Child which provides insulin and measurement tools to some of the poorest people in the world. Without doubt, Life for a Child has saved many people’s lives.

Following it securing the UN resolution for World Diabetes Day, IDF was a founder member of the Non Communicable Disease Alliance. If ever there was an example of “together we are stronger”, this is it.

You have won awards with your health advisory consultancy Metapath Solutions, does your experience of living with a long-term condition bring an unrivalled insight into your work?

Just having diabetes helps but it is how you apply that knowledge that really makes the difference. On my first day working with Sir Charles Dunstone at Carphone Warehouse, I learned the power of an absolute commitment to understanding and meeting the needs of those around you. For example, I have insisted on having people with diabetes on every clinical or stakeholder network I’ve been part of. With support, they can change the nature of the dialogue to make rapid and huge changes. The Berkshire West network is a great example of this. Bexley was pretty good too!

You lead a full and active lifestyle, including riding from Brussels to Barcelona, so what’s your advice regarding type 1 diabetes and exercise?

The only barrier is what is in your mind. Diabetes is an added consideration but the planning you have to do can actually help ensure you are properly prepared – and sometimes better prepared than those without the condition!

Please do not ignore hypos: treat them rapidly. I did not, and I understand now that this probably led to my hypo-unawareness. Without CGM this can be tough. On endurance challenges, of course you get tired and sweaty. I carried on regardless without realising I was ignoring the signs of lower blood glucose. I have since learned that by doing this, the brain switches off the signals and from there you are “blind”, meaning the first you know about a hypo is collapsing.

In 2013 you were appointed to the NHS England Commissioning Board Diabetes Clinical Reference Group, what contributions did you make?

This was fascinating as most of the people I worked with were not used to having a patient in front of them during strategic planning meetings. It changed the culture and improved the effectiveness of the group. Importantly, while there have been numerous re-organisations since, I still advise various parts of the NHS leadership and find such discussions stimulating, challenging and rewarding. One example was that as part of the All Party Parliamentary Group, I had a rant about QOFs measuring referrals rather than attendance of education. A large number of influential people were in the room, and I believe that meeting was pivotal in the changes to the scorecard that followed.

Tell us about your new project Changing Health?

I’ve known my co-founder, Professor Mike Trenell since he was a Diabetes UK RD Lawrence Fellow, and we had a great debate about what supported self management really meant. Following this, and as part of my continued drive to improve access to knowledge and support, he invited me to lead Changing Health, a spin out from Newcastle University which is based on NIHR and MRC-funded research.

Added to this we have taken the only type 2 education course proven to have a clinically meaningful impact (X-PERT) and made it available online. Mike’s (and others’) research has proven that you need to offer more than this, such as day-to-day support tools and absolutely critical: sustained coaching. This is what Changing Health provides as an enhanced service offering: evidence based online education, accessible anywhere at anytime, together with an app and a personal coach for a year. All for the same price to the NHS as attending a face-to-face course. Added to this we offer healthcare professionals the first online evidence based behaviour change education programme, accredited by the Royal College of Physicians.

What can people do to get involved in Changing Health?

Our enhanced service pathway which increases access to education and supported self management is available right now to commissioners and providers. They can find out more at www.changinghealth.com or by emailing me john@changinghealth.com.

What is the future of diabetes in the UK?

Simon Stevens expressed it very clearly at the recent APPG meeting when he talked of a shift in policy to increase the emphasis on primary and secondary prevention. Meanwhile, for patients and clinicians, technology offers huge potential: sharing data, reducing access barriers to care, and reducing variation in quality of care – all of which should improve outcomes. Even without the additional pressure created by increasing numbers of people with diabetes, financial limitations mean that providers have to work more effectively just to stand still, let alone improve. Just doing more of the same will not be good enough.