This post is a big THANK YOU to my peers for the hope and support they give me. In this case I mean other people I have connected with online and offline who live with type 1 diabetes. In particular David Craggs, Anne Cooper, Laura Cleverly, Andy Broomhead and the wonderful people I sat on a table with at the Sheffield Diabetes UK Engagement Event including Carol, Emma, Abby, Hazel and Tony.
The event which was organised by Andy and his warrior team of volunteers was a great achievement. A quite diverse range of 80 people living with the different types of diabetes and a panel of clinical leads (including a specialist consultant, gp, ccg lead, diabetes nurse, podiatrist and dietician) connected, shared and debated on the challenges of supporting people to live as well as possible with diabetes.
Topics discussed included footcare, education, cures, technology, hypos and the media. The conversations highlighted to me two key undervalued aspects of self management; hope and peer support!
This was particularly highlighted by the response promoted by a question from a person who has a Charcot foot about what exercise she can do. The podiatrist clinical response was a blanket, blunt; ‘no exercise at all’. My first thought was this was counter to all other recommendations around exercise and diabetes. My second was surely there exists a way to exercise which doesn’t require pressure or movement of the foot. A young man in the audience piped up with the suggestion of Chairobics and the GP on the panel Dr Jez McCole followed up with some suggestions.
I asked Twitter and it didn’t take long before the the very well researched and active @betabetic responded with how she found ways around broken legs and arms to continuing exercise. I later asked; ‘Does there need to be a choice made between protecting the foot or the heart and head?’ Dr Jez McCole replied ‘oh the head and heart 1st, they control and power the rest! Care with those feet though – variety in exercise’.
The podiatrist was forgetting the whole person, she was uncompromising in her response and I wonder whether she also accidentally crushed the hope of the woman who asked the question. Hope to me is one of the keys to self management. I know that my hope is that if I self-manage my type 1 diabetes well I will reduce the risks of complications and I will have a healthier and happier life (both of these qualities are important to me). Don’t take my word for it, there is even a positive pyschology theory of hope!
I think this also highlighted the power of peer support as a key element of our self management toolkit complimentary to clinical support. In this case they provided creative solutions which the clinician had not thought of and I think empathy and support which can only be given by people who are in a similar boat. Again don’t take my word for it – there is bags of evidence around the idea of peer support as part of self-management. See below for just some examples!
I also had some personal experience of benefiting from peer support during the event when I met a wonderful woman full of vitality who had lived with type 1 diabetes for 64 years. Most of the literature and publicity around diabetes is very negative and the possible outcomes for people living with type 1 diabetes can be frightening. It really does require resilience, endurance and courage to remain positive and motivated to continue to self-manage the condition. So for me, meeting someone who has succeeded in that goal has given me hope and motivation that no clinician could ever provide. I think this relates to the undervalued (in healthcare) theory of self-efficacy – seeing someone who you can identify with succeed can give you more of a sense of control over events in your life.
I also got some great practical tips in using the freestyle libre from two young women who I believe probably know this particular piece of technology better than every single healthcare professional in Sheffield!
So please clinicians, take care to treat the head and heart whilst also focusing on your speciality, hope is a fragile but very important part of our self-management.
Commissioners, innovators, leaders (patients and system) ask yourself the question, how are we facilitating peer support as a key element of building self management toolkits? This could range from sharing information about online communities, creating the conditions where patients talk to each other in the waiting rooms all the way through to developing more formal peer support programmes.
A HANDFUL OF DIABETES RELATED PEER SUPPORT EVIDENCE AND APPROACHES (there are many more – please feel free to add to the list)
Heisler, M. 2009 Different models to mobilize peer support to improve diabetes self-management and clinical outcomes: evidence, logistics, evaluation considerations and needs for future research. Oxford University Press
Fisher, E.B. 2012 Peer support for self-management of diabetes improved outcomes in international settings. Health Affairs