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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.

Tara Lawrence

Tara LawrenceDiagnosed with MODY 3 diabetes 10 years ago

Volunteering at Diabetes UK's Type 1 Events

Before lockdown, I had volunteered at the Type 1 Events for seven or eight years to help children with their day-to-day lives while their parents get to have a break, or go to sessions to educate themselves more on type 1. 

All my volunteering was in person and was being close to people and supporting them, so this has become non-existent for the time being at least. So I’m looking forward to getting involved with in-person events once they restart. 

Why I decided to volunteer

I was inspired to get involved with volunteering because I loved the idea of meeting others. I’ve always really liked the events, not only because of helping the children and seeing their point of view, but also for finding a community for myself. 

When I started volunteering I was at university and didn’t know anyone else with diabetes. It was really important for me to feel totally normal in a group of people with injections and blood glucose meters and all of those sorts of things, so that was what pushed me to do it. 

I found friends at these events and they’re like family now, so that’s why I’ve continued to volunteer for several years. We kept in touch through Zoom during the lockdown, and a few people I’ve met through events also live nearby, so we’ve been able to meet up in person. This has been really important to help me feel supported both through my pregnancy and since having my baby. 

I think events have also helped to keep me motivated when living with and treating my diabetes. So having them taken away was tough to begin with, but then having the social side of that added has been a big help. 

Read Tara Lawrence's complete story
Lizzie Holt

Lizzie HoltDiagnosed with type 1 in 2008

Lizzie's experience of volunteering

It was becoming more difficult to manage volunteering around work and life but in 2020 this all changed. During the pandemic Diabetes UK gave the opportunity to manage an online peer support group. 

I hadn’t been involved in peer support before and this was more about supporting people, whether social, emotional or practical. Diabetes UK ensured I had all the necessary training. As it was the first online group, I helped with future training packs. Things that might apply to in-person peer support just don’t translate online - technical difficulties being one example!

The peer support zoom group has meant I’ve been able to share my experience living with diabetes. It has been invaluable to us all at a time with such uncertainty and where some have been isolating. Together we have over 100 years’ experience of type 1 diabetes.

Through the group we come together, wherever we are, for support, a chat, and a friendly face. Having diabetes means a common ground with people you wouldn’t otherwise have met. It gives us a safe space for talking about our concerns and sharing a positive experience.

We have been running since last June and meet weekly to talk about our experiences with type 1 diabetes, share support and have a bit of a social. Being online it's much easier to fit around life, and someone is always on the other end!

Read Lizzie Holt's complete story

Fiona StewartDiagnosed with type 1 in 2000

Fiona's experience as a volunteer

In 2012 Fiona began volunteering with us through the type 1 events team and attended the weekenders. Fiona loved this experience, in both being able to help people and also gain a network of invaluable friends who give her so much support. She has been involved in weekenders up and down the country and cannot wait for them to get back up and running! During lockdown with the Type 1 events team Fiona has been involved in two of their panel discussions and online webinars and events. 

In September 2018 a group of local families and parents in Tayside noticed a gap in support for local families. They approached Diabetes Scotland about getting more support in this area – and Fiona got involved in helping set up the committee. Before lockdown, Fiona and the committee put on events, organised support and chats for families and got people together. During lockdown the committee have been active on Facebook and social media. They've put on online events and sent out packs, information and different ways to get families involved and stay connected with each other.

Adapting during the coronavirus pandemic 

Before the pandemic, Fiona’s volunteering was all about connecting with people. She did this either through the weekenders or through the events with the Tayside Family Group. It was all about organising things, ticking off a to-do list and her and the committee making sure things are in place for the local families and young people. 

Fiona commented how providing a place for people to connect and chat with each other is still the same, but it’s in different ways at the moment. The committee have organised a few well attended events during lockdown. Two that Fiona spoke about at length were an online Craft Day and an interactive Magician.

For the Craft Day, the committee sent out craft packs for families and young people to make windchimes and other garden decorations. They ran a great session over Zoom for families and children and they got great feedback from it and great interaction. The committee also organised for a Magician (Britain’s Got Talent’s Cameron Young) to come and perform for a group of families over Zoom and they loved it! It was fully interactive and engaging without even having to leave the house! 

Because Fiona has type 1 she has been extra careful and made sure to keep herself safe. Fiona normally travels to Aberdeen for work from Tayside but has been working from home the last year. She's saved quite a bit of time travelling but seems to be working twice as hard! Fiona and her partner moved house during the pandemic, which has kept her busy. She says generally she has been doing okay but can’t wait to get back out and show off her new house to family and friends.

Staying connected during lockdown

The committee have a WhatsApp group where they chat all together and keep in touch. They have been relying on social media to stay connected to group members through a closed Facebook group. Lots of information, events and signposting through this Facebook group. 

Just before the pandemic hit, the Tayside Family Group created a pack for newly diagnosed children. This had to be put on hold at the start of the pandemic, but in the last six months the committee have been producing these packs and have been providing support for young people and families right at the point of diagnosis.

The packs contain:

  • A Tayside Diabetes Family Group bag
  • The Carbs and Cals book, a tote bag with inspirational words
  • A pen
  • DiaWipes
  • Diabetes UK information
  • A £5 Diabity’s voucher to spend on pump/pen/meter stickers.

This has been a fantastic venture and a great way of keeping up with that support during lockdown.

How Fiona's stayed inspired

The big thing for Fiona has been being connected with people and seeing the difference that you can make by reaching out to different people in different ways. She commented about how one of the other volunteers from the Scotland Volunteer team organised some weekly calls at the start of lockdown that she went along to and chatted with people. On average seven people came along each week. She loved just getting to chat to people, keeping in touch with them and getting support from those who know what it’s like to live with type 1. 

Looking to the future

The Tayside Family Group host an annual BBQ for families in the area, Fiona cannot to be able to do this again and to be able to meet new families.  “We have the magician coming on the day and have two bouncy castles organised – it won’t happen until 2022 but we can’t wait!” As an active Type 1 events volunteer, Fiona cannot wait until the Family Weekenders start back again. She's looking forward to connecting with people she has volunteered with for years and getting to meet and support new families. 

She's also had to postpone her wedding twice during lockdown and has it booked again for September 2021. So she is itching for that to go ahead and we wish her a very happy day when it comes! 

Why you should volunteer

Fiona commented that it was how it makes you feel, to feel a part of a group and a part of helping people is amazing. Seeing people develop and gain confidence – be that through a Family weekender or through coming along to the Family group events. Fiona said she also loves seeing the young people meet others with type 1 and realise they are not alone. They also get the support they really need. Also, Fiona spoke about how she has developed, grown in confidence and tried new things through volunteering, and she has loved every bit of it.

Thank you, Fiona and the committee, at Tayside Family group – you are amazing volunteers. The work you do to support people living or affected by diabetes is so great and we are so lucky and thankful to have you with us! 

Read Fiona Stewart's complete story
Clare's story

Clare Dowling

Clare's experience as a volunteer

"When I was diagnosed with type 2 diabetes I wanted to be part of a community trying to make a difference in the fight against diabetes."

Clare initially volunteered with Diabetes UK to be a member of the James Lind Alliance top ten priority setting group for type 2 diabetes. Following a series of nation-wide surveys, volunteers gathered in London to work together to identify the top 10 research areas deemed most important to those living with diabetes, healthcare professionals and carers. 

“The experience was inspiring and uplifting. I left wanting to become more involved with Diabetes UK. I was encouraged to join the Grants Advisory Panel (GAP) by a member of the group I met at the priority setting partnership event. Once he explained what it would involve, I was on board straightaway!”

“The encouragement and respect I feel from the Diabetes UK staff and the other members of the panel makes me know my opinions and experiences are important”

Adapting to the virtual world 

The pandemic “challenged the way GAP works” says Clare. Usually the Panel meets for two full days per year. This has since changed to four half days via Zoom. Clare was part of the panel for the Covid-19 and diabetes rapid response call in May 2020 which allowed her to quickly adapt to volunteering in the virtual space. Clare is very much looking forward to returning to face to face meetings. In her own words “there’s nothing like in person gatherings as we’ve all learned over the past year.”

What volunteering means to Clare

“The best thing about volunteering is meeting so many interesting and friendly people who aren’t taking their diabetes diagnoses lying down! And it is so wonderful to learn about the exciting work going on by researchers. Volunteering gives you a sense of hope that we will be able to live in a world where diabetes can do no harm. I would encourage anyone who is thinking about volunteering with DUK to do so even if you don’t have a lot of time to give. There is an opportunity for us all to play our part”

Clare has been inspired by so many “heroes” locally and nationally. “I would watch the news and see how frontline workers and volunteers were working endlessly to help other people.” Clare was inspired to follow her local volunteer groups on social media to try and contribute. “I ended up making masks for a local care home at the start of the pandemic and shopping for neighbours who were shielding”

Looking to the future

Clare has recently received her second covid vaccination. She's looking forward to spending time with family and friends and taking a vacation to Scotland with her husband and dogs. 

“Hopefully a trip back to visit family in the US will happen in 2022. Oh, and I’m really looking forward to a haircut!”

If you’ve been inspired by Clare’s story, find out how you can get involved

Read Clare Dowling's complete story
Frankie smiling into the camera

Frankie BlakeDiagnosed with type 1 in 1966

Frankie's experience setting up an online support group

Frankie lives in North Devon and before the pandemic she attended the local group’s public support meetings held at Roundswell Community Centre in Barnstaple, where people affected by diabetes could hear from guest speakers and meet others living with diabetes. Frankie, who has type 1 diabetes herself, says it was nice to see people, get together in groups and meet socially.  

When the pandemic started, these meetings stopped and Frankie spotted a new volunteering opportunity. Diabetes UK were advertising for Peer Support Facilitators to start up meetings online. This would help people in lockdown to continue to feel supported, stay connected and access the information they need to manage their diabetes well.

After chatting with the South West volunteering team about what’s involved, she decided she wanted to set up a group for people also living with type 1 diabetes. This would enable them to continue to meet, benefit from sharing their experiences and stay in touch despite the lockdowns during the pandemic.   

Frankie says that a huge advantage of her online support group is that ‘people can attend from anywhere in the UK, and they don’t have to go out in the cold and dark to get to a venue.’ Her members live across Devon and she hosts meetings in the evenings, so it’s ideal for people who work and couldn’t make a daytime get-together.  

Frankie attended the Peer Support Facilitator training run by Diabetes UK which supported her to consider the role, the importance of starting and encouraging group conversations, listening to each other and asking questions in a friendly and safe space. She says she was nervous before her first meeting but is now enjoying hosting the group, and they’ve had some great conversations so far. 

What happens at Frankie's sessions

The group has chosen to chat about the different ways they manage their type 1 diabetes, sharing how they are getting on using their own technology and different types of devices. They’ve also talked about how they are finding accessing care and booking online appointments. They also chat about how they are getting on during the pandemic with their diabetes, and with life in general.   

Members have thanked Frankie at the end of the meetings saying they’ve enjoyed getting together and found it useful to hear from each other, especially at a time when everyone has been more isolated than ever before.  

Frankie says there have been some challenges along the way in setting the group up, but by far the biggest hurdle has been learning how to use and host meetings on Zoom: ‘I tried to log in to host our first meeting, but ended up having to shut down, restart and send out a new link. It worked and when we all made into the meeting we had a great chat about the novelty of being on Zoom, which of course is now completely normal!’   

What's next for Frankie's group?

She says her group is hoping to appeal to new members and she wants to invite guest speakers. This will give people the opportunity to ask questions and chat with Healthcare Professionals such as Diabetes Specialist Nurses, Diabetes Consultants and a Dentist. Why a Dentist? ‘Very few people realise that diabetes can affect their oral health'. Frankie wants to help support people with every aspect of living well with diabetes.  

The group currently meet on the third Tuesday of each month.

You can contact Frankie Blake diabetesgroupT1@gmail.com to find out more about the group. You can also find out more about our North Devon group.

Read Frankie Blake's complete story
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