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Advice for people with diabetes and their families

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Volunteering

Volunteering is at the heart of everything we do here at Diabetes UK. Here we share stories from people from across the country who have joined us in the fight against diabetes.

George West walking near cliffs

George WestGeorge West was diagnosed with type 1 diabetes four years ago

Getting involved with Diabetes UK

I decided I wanted to try and raise some money for Diabetes UK, so signed up for a 10k in Sheffield. I received my fundraising pack containing my t-shirt and banner, which also included a leaflet about the charity. The leaflet made me realise that I had never really looked into any resources, even though I was probably in need of some help. From there, I discovered Diabetes UK’s Learning Zone and their Helpline, which my parents actually called when they were struggling to understand my diagnosis.

I found Diabetes UK’s website really helpful, and still do. You can find anything on there that you need to know, which is what’s so great about it. It’s also been helpful to have a reputable source of information during the pandemic and I’ve found the social media pages particularly helpful for updates.

Being based in Sheffield for my studies, I have close links with the North of England team who send me lots of information and invites to Zoom meet ups. I started volunteering with Diabetes UK in Barnsley, as part of a community project for my studies, which involved raising awareness of type 2. Gradually I began doing talks, helping on the kids’ camps, and working with the local diabetes teams. I found that once I looked for help, I started giving back to Diabetes UK. I owe them a lot; without their help I wouldn’t be in the position I am now.

Feeling inspired to continue raising awareness, I’ve now started an Instagram account called @LearnDiabetes, with a few other NHS doctors. One thing that had really struck me when I was first diagnosed was the stigma and misconceptions that surround all types of diabetes. My hope is that we can dispel certain myths and educate people about all things diabetes.

Read George West's complete story
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Sarah GibbsDiagnosed in 2014.

Giving back

I wish I'd been given more information when I was first diagnosed, as opposed to being told you have diabetes and someone will see you in six months’ time.

So in addition to running the Newport support group, I'm currently volunteering with the health board and the expert coordinator for structured diabetes education. The aim is to get more bums on seats at the courses, so I rings patients and ask if they want to do these courses, explain what's involved and that I've done it myself and can vouch for how good they are. As a result, they seem to be getting more uptake. I think that a lot of people don’t realise there is structured education out there so working on the promotion of these courses is essential. 

I'm also on the reference panel for the Diabetes Research Unit at Swansea University and reviewed new Pocket Medic videos before they were made public. They show sensible ways to shop and what to look for on food labels. When I was diagnosed, what I was going to feed my family was a real panic. I think these videos should be compulsory viewing for everyone at their diagnosis appointment.

When I was first diagnosed, I was in a bit of a rut and felt really sorry for myself because I was unwell. But I now feel that my diagnosis has given me a purpose – to spread my knowledge and raise awareness with as many people as I can.

Read Sarah Gibbs's complete story
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Susie MarquesSusie's daughters diagnosed in 2015 and 2016.

Getting involved with immunotherapy research

I saw an advert to get involved in helping the DRUC on their Patient Reference Panel with research applications, lending my opinion as someone with that real life experience of diabetes. Through that I heard about the USTEKID trial and became a Patient and Public Involvement volunteer for them.

I go to meetings with the researchers and trial managers and use my unique perspective to advise them about what a parent or child taking part in the trial would need to know, or any challenges that could arise.

Research is so crucial to help understand why and how type 1 diabetes happens and to get to the point where we can prevent it. It was a no brainer to get involved. I wanted to help my daughters and everyone else with type 1.

Read Susie Marques's complete story
Sarah smiling with Tris, a musician who lives with type 1 diabetes

Sarah GreenWorks as a diabetes volunteer

Supporting other community members

I love seeing live music and I first met Tris when he was playing drums at a local gig. As well as being an office volunteer for Diabetes UK, I write music blogs. Tris asked me if I’d write a review of his band for a music blog which I was delighted to do. 

Through this we became friends and not long after we met, he asked me to write another review for a new band he was in. The night he was due to play, he called me to say he was really sorry but he couldn’t perform because he’d just left hospital after being diagnosed with type 1 diabetes.
 
Because of my volunteer work at Diabetes UK, I have a great affinity with young people affected by diabetes, and I feel it’s really important to get information to this hard-to-reach group. 

When Tris told me he’d been diagnosed with diabetes, I wanted to help him in every way I could. Not long after he was diagnosed, Tris wrote a song about how to handle a hypo called ‘Completely on Your Own’.

The headlining performer was Felix Hagan and I asked Tris to support him. He sang ‘Completely on Your Own’ and it was a fantastic success. It’s a beautiful soulful song and when Tris sings it, people really connect with it and start to understand what it’s really like to have diabetes and experience a hypo. Through his song, young people at the group including Tris’s friends from university have learnt to understand diabetes and do everything they can to support him. 

Read Sarah Green's complete story
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