Swansea Bay peer support group playing key role in helping patients conquer diabetes fears

A Swansea Bay peer support group for people newly diagnosed with type 1 diabetes has been commended at a national awards event for consistently delivering clear improvements for patients.

Members of Talking Diabetes Together have been meeting regularly online for the past 18 months to share feelings, experiences and advice which is helping participants learn how to live with diabetes.

Swansea Bay University Health Board Diabetes Dietitian Andrea Miller, who lives with diabetes herself, established the group after realising the best way to help two newly-diagnosed patients get over their fear of using insulin was to bring them together. A number of other people diagnosed at the same time also subsequently joined the group.

Andrea, who has worked for the health board for nearly six years, is happy to give up her own time out of work hours to co-ordinate the regular online meetings, although she keeps her input to a minimum by allowing participants to take subjects discussed in whatever direction works best for them.

Andrea’s work in getting Talking Diabetes Together up and running was recognised at last month’s Quality In Care (QiC) Diabetes Awards 2023 in Reading, with the initiative being shortlisted for a new Peer Support Award on the back of some glowing feedback from group participants. 

Raising awareness and support around diabetes is especially apt this week, with Tuesday having been World Diabetes Day. 

Andrea said: “I talked with colleagues about doing this, bringing people together, before the pandemic. But it never got off the ground because we’d have had to try and bring people in of an evening. Then technology like MS Teams really opened our eyes as to what we could now do.

“One of the reasons I set it up is because we had two people diagnosed in the same week who were extremely upset with the diagnosis and wouldn’t do their insulin injections.

“They were both young boys – 17 and 19 – and they were getting their mothers to do the injections for them.

“I just felt that they really needed to talk to each other about what they were experiencing.

“So I got them together and as it happens, there were about another three or four people diagnosed at about the same time.

“We all had a chat, and between us we spoke about how it’s OK to be apprehensive about your insulin but it doesn’t hurt, it’s all fine.

“The two boys were receiving insulin so they knew what it was like. But they needed that confidence and after they got off that call, they got on with things and have never really looked back.

“It’s about helping people to self-manage. When they come together in our group, they can also offload their emotions.

“It’s also so important to show them they are not alone. There are other people going through the same experience. And there are people they can talk to who have gone beyond those emotions and feelings, learned to self-manage and are getting on with living their lives.

“When I’m with the group I try to build some confidence. It’s about what they can do, not what they can’t. So I try to show them they can still do their sport or go on holiday. I try to help make them a bit more resilient and help them to manage their day and expectations.

“Before getting a diagnosis, they wouldn’t have given their glucose levels a second thought. But then all of a sudden they’re scrutinising their glucose and it’s really scary when they see their levels are really high.

“But we know they’ll be high, because they’re newly diagnosed.

“Someone will say they’re going out for a meal but they’re scared because it’s the first time since being diagnosed. So I’ll ask if someone else who has lived with diabetes for longer can explain how they’ve been eating out and how it’s great and why there’s no need to worry. And then we’ll encourage the person who is concerned to give it a go and then come back the next month and talk about how it went.

“Same with a first holiday. We talk them through it in clinic but they are much more likely to take it on board from someone going through the same emotions and experiences as they’ve been going through.

“We’ve also had someone who’d had a few hypos – where the blood glucose level drops below the normal range. They weren’t treating the hypos correctly as they didn’t like the taste of the glucose tablets. Another group member explained there are other flavour options which are much nicer and to try them, so it is tiny things that are making a difference.”

Talking Diabetes Together is not, however, a replacement for post-diagnosis education from healthcare professionals, or a replacement for regular check-ups.

“As a dietician I see them quite quickly into their diagnosis,” added Andrea, who is pictured second from left with other Welsh winners from the QiC Awards.

“We do the education that patients need. And we need people to come back to us on a regular basis for review and check-ups - of course we do.

“But what tends to happen early on is they can become quite overwhelmed. And people go through so many different emotions.

 “It’s not for everybody, not everyone wants to chat. But a lot come three, four, five times. Many come for longer than that.”

Andrea used the QIC Awards event to not only reflect upon the fantastic feedback that led to her group’s nomination, but also to network with other health staff to explain the relatively simple but effective concept which is helping build the confidence of patients as they adapt to a new chapter in their lives.

“It was great for us and Swansea Bay in general to be involved,” said Andrea, who has worked as a Diabetes Dietician for more than 15 years and diagnosed her own diabetes after quickly recognising the signs about 10 years ago.

“I had to submit some feedback for the QiC Awards and the words they used on the evaluation form for how they felt at the beginning were depressed, alone, isolated or overwhelmed and frightened. These words came up all the time.

“Then when I asked about how people felt after coming to the support group, they used words and phrases like happy and confident, positive to continue, supported, less alone.”