"You get out of volunteering all that you put in - and more. You just need a bit of energy and determination."
Meet our Volunteer Spotlight for July 2021, Lis Warren
Lis was diagnosed with type 1 diabetes in 1965. She lives in London and has volunteered for us for over 20 years as a tireless speaker, campaigner, research volunteer and service champion.
Lis first started volunteering for Diabetes UK at awareness stands and by helping people to know their risk of developing type 2 diabetes. She also joined the Patients' Association at her local GP surgery and edited their newsletter. She explains that her interest and ability to volunteer has grown over the years and through her involvement on many diabetes committees.
"The most fantastic thing is that I learn something from every single volunteering task, it’s immensely rewarding, fun, and always stimulating. I’ve had type 1 diabetes for 56 years, so I’ve got a lot of personal experience. But you always learn from hearing other people’s stories and how they’ve coped with difficulties. It’s all useful information and when you meet someone else, you can say you’re not the only one, I’ve spoken to someone else that happened to.”
Founding the Diabetes UK Medalist Group
Four years ago, Lis started up our Medalist Facebook Group for people who have lived with type 1 diabetes for over fifty years. She had the idea of setting up the group after she learnt that the Joslin Diabetes Center in Boston, Massachusetts also gives out medals and has a medallist group on Facebook.
“When I got my Joslin medal, I automatically joined their group and encouraged other Diabetes UK medalists to join. But the group discussed things that were mainly relevant in America (relating to their very different health service), so I thought ‘let’s have a UK one!’
Although the new members wanted to meet face-to-face before the pandemic, it was difficult because everyone was spread out across the UK. But when Covid struck, the charity helped us set up a Zoom get together. We had a super turn out and it was a smash hit, we all loved it.”
Lis is part of a Diabetes Research Steering Group looking at living with diabetes long term and has taken part in a series of workshops looking at ageing with diabetes. She was pleased to involve both medalist groups in this work and get their views.
“We posted a survey and asked the UK medalists to film short clips saying how they feel about ageing with diabetes, what they are concerned about and what care they need. There were researchers and clinicians at the workshop who are used to working with the elderly and have an interest in elderly people with diabetes.
"They were really shocked to hear the patient perspective. For me, the videos from medalists were the most powerful aspect of those events and really packed a punch. Ageing well with diabetes is an area that needs more research as there are more and more people living longer with diabetes.”
Involvement in diabetes research
Lis is passionate about patient participation in research and the benefits it brings to research studies and the people with diabetes taking part.
“I love my work with the Diabetes Research Steering Groups (DSRGs). I find it interesting and stimulating. I love volunteering on research studies myself. I’ve done a lot on different PPI committees and with the NIHR to help promote research participation.
When you’re working with researchers, you learn, and it motivates you. It’s fun to work with clinicians, you also meet other people with diabetes and other volunteers with similar motivations. It’s very rewarding, sharing your experience and point of view feels like a helpful deed. It’s a win-win, you can’t fail to enjoy it. I don’t understand why more people with diabetes don’t come forward to help with studies.”
Standout moments from volunteering
“I’m really proud of the medalist group. People are joining almost every day and saying how great it is to talk to other people who live with diabetes. Some people have never met others with type 1 diabetes before. It’s providing wonderful peer support and building virtual friendships.
There’s a very special bond when you’ve lived through that history together. Other people can’t understand the emotional impact diabetes has, and that bond you feel is irreplaceable. I was doing a Diabetes UK stand in my local park and a woman came up and said she’d had type 1 diabetes for around 65 years. I was one of the first people with type 1 she’d spoken to.
"She then joined our type 1 Community Group in Harrow and is now in our medalist group. We go for walks together and we understand each other almost without needing to say anything. It’s very special and unique. The value of knowing you’re not the only one that’s had hypos or hypers or struggled through pregnancy or got fed up with eye screening appointments or the extra things you have to think about and kit you have to carry.”
Another of Lis’ many achievements is the influence that she’s had on pushing forward the diabetes and mental health agenda and the need for research and more services.
A few years ago, she took part in a Diabetes UK forum as a service user representative. After the event, she was part of a group that created a list of mental health research priorities. She was also in a smaller group to decide what Diabetes UK should focus on first.
Diabetes and eating disorders was one of those priorities. “I feel proud to have campaigned and pushed that agenda hard. I’ve also pushed it in the North West London Clinical Commissioning Groups to ensure emotional well-being and mental health are included in the care for every person with diabetes at their annual review.”
“I love meeting new people and I love helping people. I’ve been a social worker and a civil servant working in public policy in health and education. It would be such a waste to sit back and not talk about having diabetes when I’ve got those skills from my employment and life experience with diabetes. I’ve got the personal experience and the willingness and desire to help people. I guess I’m a public servant in my genes as relatives were clinicians and one, a lifelong politician!
I lost my husband last November and I’ve needed to step back from a lot of voluntary work recently. I’ll be choosing more carefully what I what I want to focus on in the future. I’ll be looking at what my skills are best suited for and the things I know most about and capture my interest. I’d like to concentrate mainly on emotional wellbeing and research.
You get out of volunteering all that you put in - and more. You just need a bit of energy and determination. For anyone thinking of volunteering or just starting out, I would say to try to meet other enthusiastic volunteers. Talk to them and you’ll be inspired.”
If you’ve been inspired by Lis’ story, take a look at our latest volunteering opportunities.