“Volunteering at Diabetes UK means an awful lot to me. It’s a big part of my life. I feel valued by the people I’ve worked with; staff, fellow volunteers, researchers and clinicians. If you’re interested in volunteering then go for it! It really benefits you and you’re helping others affected by diabetes too.”
Meet our Volunteer Spotlight for January 2020, Tom Rush.
Tom, a retired nurse and lecturer, chairs our research committee in Northern Ireland. He also raises awareness of diabetes in his local community. Tom was diagnosed with type 2 diabetes twelve years ago and has volunteered ever since. He has recently got the good news that his diabetes is now in remission.
Being diagnosed with diabetes
“It knocked me for six to be honest. I was shocked as there isn’t a history of diabetes in the family, although my sister was diagnosed with type 2 diabetes a few years after me.
Through my previous career as a nurse, I had a certain level of knowledge of the condition, but things have moved on since I practiced in the 1970s and I felt there was much I needed to learn.
As soon as I became aware of Diabetes UK, I rang the Helpline and I found the call really helpful. They directed me to the website where there is a great deal of useful information. I was slightly overweight so I worked hard to improve my diet and to be more active. I was really pleased to be told recently that my diabetes is now officially in remission.”
Becoming a volunteer
“I made contact with the team in Northern Ireland not long after I was diagnosed. I was coming up to retirement so I knew that I was going to have more free time and I thought that I’d learn more about diabetes by getting involved and helping the charity.”
Tom is a volunteer speaker and gives talks to various groups in his community about his experience of being diagnosed with diabetes and the importance of having a healthy diet and exercising regularly.
“I mainly speak about type 2 diabetes because that’s where my knowledge lies. People also really appreciate the personal element and the real life examples of what it’s like living with diabetes.”
Tom has also previously spoken at diabetes refresher courses for registered nurses to give them the patient perspective.
“I love talking to people so really enjoy volunteering at awareness raising events where I get to talk to the public and hand out literature. I’m also a trained ‘Know your Risk’ assessor and help people to understand if they’re at risk of developing diabetes. Often companies put on health days for their staff and that’s where volunteers can get involved, whether it’s giving a talk or doing know your risk.”
Chairing the research network in Northern Ireland
In 2014, Diabetes UK in Northern Ireland set up a research network, a patient participation in research group.
“They asked me if I’d like to join the panel and I said yes immediately as it really attracted me. I co-chair the group and we have about 10 volunteers on the panel. It’s a diverse group with all types of diabetes represented and a parent with a child with diabetes. We meet 4 or 5 times a year at the Northern Ireland office. We tend to meet in the evenings or at weekends.
Researchers writing Patient Participation in Research (PPI) requests can fall into the habit of writing for their peers and using clinical or academic language. Our role is to look at their proposals and decide whether non-experts would understand what they’re trying to say. We suggest they take away abbreviations and acronyms for example. Researchers who don’t involve service users, don’t do so well when applying for funding for their studies. The researchers that we work with are always really grateful for our input and sometimes get commended on their service user involvement."
Improving the language that healthcare professionals use
Two years ago, Tom was told that he had pre-retinopathy. He was informed by the hospital through a letter. The letter was quite abrupt, factual and, although Tom’s case wasn’t a serious one, lacked any reassurance. He showed the letter to the research group and they agreed with a few of the group having had a similar experience with diabetes related letters they had received.
At around the same time, a new person was appointed to reform the eye-screening programme across Northern Ireland. The eye screening was designed ten years previously and it hadn’t been updated in this time. Tom worked with our team in Northern Ireland to write a letter about his experience and how scared he had been when he read his letter. They took the comments on board and improved the letter template to patients.
“I was fortunate to attend an event last year focusing on how healthcare professionals and patients to talk to each other. There were about thirty of us and we were asked to recall how we were told that we had diabetes and what language the clinician used. It was very interesting to hear the range of stories, sadly some having negative experiences. I myself had a positive experience with both my GP and my diabetologist who both explained things clearly. The healthcare professionals that were there learnt a great deal from the workshop. There are plans for a follow up event, which I’m looking forward to.”
“If I had to pick a standout moment, it would be the work that the research committee did on an emotional health and psychological well being study. A psychologist right at the beginning of his project approached us. He wanted to look into how people with diabetes really felt. His proposal was to construct a questionnaire and also interview people in diabetes clinics. We were able to help him to devise his questions and we were involved with each stage of his study. All of the members of the committee were able to input because emotional well being is something that we can all relate to.”
“More of the same really. Volunteering at Diabetes UK means an awful lot to me. It’s a big part of my life. I feel valued by the people I’ve worked with; staff, fellow volunteers, researchers and clinicians. If you’re interested in volunteering then go for it! It really benefits you and you’re helping others affected by diabetes too.”
If you’ve been inspired by Tom’s story, find out how you can get involved.