The Diabetes Ireland national conference took place in Limerick on Sunday November 10th and, as Limerick is so close to where I live, Thriveabetes decided to exhibit and spread the message about the Power of Peer Support in diabetes. It was brilliant! Myself and Averil, Aisling and Jill from the Limerick type 1 adult support group met so many people and exchanged so much of our lives with diabetes with so many strangers who we hope will find their own support locally.
Pictured: Grainne, Aisling and Averil from the Limerick Type 1 Diabetes Adults group
We are so lucky in the midwest to have so many amazing volunteers who also share the belief that meeting other people with diabetes, like ourselves, is one of the most important things you can do for yourself and your loved one with diabetes and that we learn so much about the everyday living with diabetes from each other. I’m aware that there is very little in the way of face to face diabetes peer support in other areas….yet! Thankfully, online peer support overcomes the geographical barriers and can be a wonderful substitute.
When I moved back to Ireland from the US in 2006, to a new town on the opposite side of the country to where I used to live and my diabetes management started to flounder, it was the first time I felt lost and isolated. I got so frustrated with the diabetes care I was receiving. But it was only when I had a clinic appointment that left me in tears that I decided that I was not going to accept it, it was my health and the future of my family that depended on better care!
I knew that if I could find other people with diabetes I would find out where the good diabetes services were. I helped Diabetes Ireland set up a support group in Ennis in 2007 and I have not looked back since. Not only did I find a better diabetes service in the region, I found additional services such as podiatry and eye screening that I was completely unaware of, as well as exchanging tips on the daily challenges of managing diabetes.
Our group continues to be a source of information, motivation and inspiration for me.
So what is so great about Diabetes Peer Support?
People with Diabetes Empower Each Other
Diabetes self management education provides a rock solid foundation but then, we need to adapt this knowledge into our individual lifestyles. Solutions to the challenges we encounter in our daily lives with diabetes have usually been found in multiples by other people with diabetes, so connecting with other people can help us find many possible solutions to our daily challenges and we become more capable to manage our diabetes by ourselves as we are always left to do regardless of if we have access to education or not. We learn so much from sharing our experiences: we exchange tips on overcoming the everyday challenges of diabetes. We also help to keep each other stay up to date on the latest research, technologies and treatments in diabetes.
Diabetes Peer Support Helps where there is no Structured Education
Peer Support doesn’t replace Structured Education, however in areas where diabetes self management education still isn’t available ** people with diabetes can help each other navigate the maze that is our health service to find where they can access the services they need as well as helping us challenge the misconceptions out there in relation to diabetes.
I am reminded by this slide from David Chaney, Diabetes UK, in a presentation to diabetes health professionals in 2016 on providing diabetes education:
“If you don’t teach people about diabetes, others will”
Says it all, doesn’t it!
Yet we still have huge pockets of the country of Ireland where there is no diabetes self management education available because we don’t have enough diabetes specialist nurses or specialist dietitians in our health care service.
** FYI: according to the Budget Impact Analysis for the National Clinical Guidelines for adults with type 1 diabetes, it would cost €3 million over five years to provide Structured Diabetes Education nationally for adults with type 1.
Here’s something to ponder: If the total number of people with diabetes in Ireland, who did not have a medical card, gave €5 per month for our diabetes supplies, I estimate that would amount to €6 million per year - would you pay this if it meant more diabetes specialist nurses and diabetes dietitians in your area?
Anyway, back to peer support. What is so powerful about meeting other people with diabetes?
You Are Not Alone!
Living with diabetes can be isolating and feel like a very lonely place especially given how misunderstood diabetes is among the general public and how approximately, 95% of the time diabetes management is done by the person living with it outside of a medical setting. So, when you find a group of people who all live with diabetes it’s like finding something you never knew was missing!
Emotional Uplifting
The impact of being diagnosed with diabetes has been well documented globally but we are only beginning to have that conversation here in Ireland. Being surrounded by others who understand what living with diabetes is like without having to try to explain it brings such an emotional and motivational uplifting. We all understand the diabetes lingo: we don’t look confused when someone uses words like: HbA1c, hypo, high, I:C ratio, sensor. We understand those words straight away. We often bond over diabetes without even knowing anything else about the other person. Diabetes is what brings us together, but we also find long lasting friendships.
Peer Support Empowers Diabetes Health Professionals
Diabetes peer support brings enormous benefits to health professionals. Our diabetes health professionals just don’t have time we require from them. They are overworked and there is so much information for a person with diabetes to learn, especially in the beginning, that it is very difficult for any health care professional to cover absolutely everything, even if they did have the time. They also don’t have the lived experience knowledge. Diabetes peer support fills those gaps. We offer each other practical advice about dealing with diabetes but if a person with diabetes is interested in a new technology, the support group shares information and when a patient asks about it in clinic, they are one step ahead for the nurse/clinician.
When we are more informed we have also done a lot of problem solving ourselves before we walk into our clinic appointment so we are already a couple of appointments ahead in terms of solving the problem because we haven’t had to wait for our next appointment to get the next “trial and error tip”.
The Medical Futurist, Dr. Bertalan Mesko, says that “empowered patients, empower health professionals”. The evidence of this is growing: research published in 2018 on the Effect of Diabetes Online Community Engagement on Health concluded that people with diabetes who are engaged with support groups tend to improve their quality of life, improve health outcomes which decreases hospitalizations and inpatient days, and reduces the overall cost of health services. All of this relieves an overburdened health service and its health professionals.
Peer support is the most undervalued, underused resource people with diabetes have today and I’d love to see that change.
Here are a couple more articles from others on the benefits and power of peer support:
Effect of Diabetes Online Community Engagement on Health Indicators: Cross-Sectional Study
Websites that allow interaction and crowdsourcing the collective wisdom of others [3] can help patients manage their own health by providing tools for health promotion and disease self-care, decision support, support for behavior change, and access to online communities
Diabetes Peer Support Communities: Powerful Benefits:
Get and give support
Offer practical insights about dealing with diabetes
Let members share challenges and stresses
Minimize the isolation of living with diabetes or helping care for someone living with it
Help people stay abreast of diabetes research, technologies, treatments, and more
Unite people with others going through the same stage of life with diabetes, such as college, pregnancy, retirement, or just generally dealing with complications
Advocate for diabetes causes and concerns
Day One of Life with Diabetes: Memories from Diagnosis Day by Kerri Sparling
“A diabetes diagnosis doesn’t come with a set of instructions. Sure, it comes with recommendations and suggestions, but there’s no “how to” of life with diabetes. Most of the time we figure it out as we go, which is what brings us together in our little corners of the Internet, sharing our best practices and worst moments.”
Useful Info from Australia’s Diabetes Conference by Melinda Seed
“The camaraderie of my peers for me personally was not only fun and emotionally nurturing but also, with each other we learnt so much more by sharing and discussing things rather than just hearing and forgetting. I think this is the key-we learn in community, not just by a “better” imparting their knowledge and this goes for learning to live with diabetes in general.”
Peer Support: Research And Reports
Peer support has been shown to:
Improve quality of life,
Improve engagement and satisfaction with services and supports,
Improve whole health, including chronic conditions like diabetes,
Decrease hospitalizations and inpatient days, and
Reduce the overall cost of services
Peer support empowers people to make the best decisions for them and to strive towards their goals in their communities. Peers are an essential component of recovery-focused systems and are key across settings and stages of recovery.
Guide to finding peer support communities from the American Diabetes Association
Diabetes Support Group in Ireland
There is a list of diabetes group on our Thriveabetes.ie website, most of whom are support groups, have a look and see if there is one near you. If there isn’t one near you all it takes to set one up is to arrange to meet one person for a cuppa, you may find that person in this group where meetups are happening all the time. And this one if you are a parent of a child with diabetes.
Find Your Tribe!