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Advice for people with diabetes and their families

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Volunteer Spotlight - James Rodger-Phillips

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James Rodger-Phillips

Hearing about the experience people have had at the events is always the highlight for me

Meet our Volunteer Spotlight for February 2020, James Rodger-Phillips

James is a secondary school teacher and lives in Edinburgh. He was diagnosed with type 1 diabetes in July 1990 and attended several type 1 events as a child. His experience inspired him to get involved and he is now helping to run the events as a lead volunteer.

Where it all began

“Back in 1994, I attended a type 1 event as a child. I had an amazing time and it was the very first time that I built up the confidence to inject on my own which was a massive deal for me.

Fast forward 15 years to 2011, I was a teacher with generous summer holidays and lots of time to volunteer. I remembered the type 1 events and the impact that going had on my life and I knew I wanted to get involved.”

“My first event was a daunting experience. I was helping to supervise 24 teenagers, working with a team of volunteers I’d never met before in a completely new city. Once I’d done my first event though, I couldn’t wait to help at another one and I volunteered at 3 or 4 events a year over the next five years. I was then lucky enough to shadow a lead volunteer for a year, pick up the ropes and see what was involved.”

In 2017, James took the lead on his first event. He went on to organise two family weekenders in June and November 2019.

Family weekenders

Type 1 family weekenders are held across the UK and children and young people with type 1 and their whole families can come and join in. They involve games and activities, a party on the Saturday evening and diabetes education on the Sunday morning.

“The first thing that every kid at a type 1 event says is that they are the same as the other children there. They are the norm rather than the exception and that’s incredibly empowering for them.

The events also provide a safe space for the parents to talk to each other about living in a family with type 1 diabetes. The parents often stay in touch with each other after the events. They attend workshops and can develop their skills and knowledge in areas like diabetes tech and managing blood glucose with sport. We have doctors, psychologists, PDSNs and dietitians at the events and the parents come away with more answers than they can get in a short clinic setting.

Hearing about the experience people have had at the events is always the highlight for me; having a parent thank you at the end of an event and say that the weekend has changed their life. We get feedback about how amazing the volunteers are and how the children said they didn’t want to come and now they can’t stop talking about it!”

Being a type 1 event lead volunteer

Planning for an event can start up to a year in advance. As a lead volunteer, James chooses the structure of the weekend, the types of session the parents will have, helps with menu planning and thinks up activities to keep the children entertained.

“The lead volunteer is heavily supported by a volunteer in charge of the children’s programme and the type 1 events team staff. The children’s programme coordinator works tirelessly to keep the kids happy.

We also work closely with the type 1 events team at Diabetes UK to recruit a team of volunteers. The volunteers are from all walks of life but everyone is united in wanting to help give the children a life changing experience that they’ll never forget.

It’s a challenge to take a team of strangers and, in the four hours before an event, turn them into a well-oiled team that are going to give the families a really good time. My job is to get them excited and ready to hit the ground running. 

It’s amazingly rewarding though, seeing the same group of people who were strangers at the beginning of the weekend, hugging each other and saying goodbye at the end having made lifelong friends.

Volunteers at the events

Many of the volunteers have type 1 themselves and they act as role models and offer the children support. They’ve gone through the same challenges. They help to build their confidence in talking about and managing their diabetes.

There’s always a lead healthcare professional on the event, either a doctor or a PDSN. They take responsibility for keeping the kids safe and healthy. There’s also a lead dietician who focuses on making sure the children are eating well and supports them with their carb counting.

For the healthcare professional volunteers who spend a huge amount of time in clinic, they find the experience immensely valuable. It’s often the first time they’ve seen diabetes being managed on a day to day basis; pumps, carb counting, injecting. They see hypos and they help to deal with them.  

A shared purpose

It’s an absolute privilege to work with a group of volunteers with the passion and experience of having of lived with or worked in diabetes. They all have the same purpose in mind; to try and make the children and families lives a little bit easier. It just works because everyone wants it to.

Some of the volunteers have been helping at events for 30 years, for as long as I’ve had diabetes. People come back year after year, seeing the positive experience the events have is addictive. It’s also a chance to reconnect with people that you’ve met at events before.

I met Hattie, the Children’s Coordinator for the 2019 events, when she was 16 and a young person attending an event. It speaks a great deal to the power of these events that so many attendees go on to become volunteers, just like Hattie and myself.  It’s really nice to see that people get so much from the events that they want to contribute to making them as successful as they can be.

I’ve made some incredible friends at the events that I can talk to about my experience of the condition, get emotional support and ask questions. I was nervous about getting a pump but after hearing from other’s experiences, I was convinced it was right for me. I can’t think of another space where I would have got to meet a group of people so passionate about sharing their experiences and supporting others.

What would you say to someone thinking about volunteering at a type 1 event?

I would say that you are going to have an incredibly intense weekend, looking after children, climbing up rock walls or abseiling down cliff faces. It will also be the most rewarding weekend of your year and you’ll come away with friends for life.”

If you’ve been inspired by James’ story, find out how you can volunteer at the type 1 events.

 

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