DRWF Events: Camp in the Cloud for young people with type 1 diabetes

Dr Mayank Patel, Consultant in Diabetes and Acute Medicine at University Hospital Southampton NHS Foundation Trust and member of the DRWF Editorial Advisory Board, said: “As co-creators of the Type 1 Origins comics series, Professor Partha Kar, Danny at Revolve and I, have been pleased with how well this has been received by those living with type 1 diabetes and those close to them, healthcare professionals and members of the public.

“I was delighted to be approached by the DRWF to support their virtual diabetes family camp. To spend some time online, seeing and hearing from kids living with type 1 diabetes and their parents, whilst watching them create their own brilliant array of diabetes related comic characters live was absolutely fantastic! I think us grown up comic creator types have got some serious competition.”

Jim Lavery, comic illustrator and artist, said: “I am always amazed and inspired by the ideas, stories and illustrations dreamt up by young people living with Type 1, a huge part of my job is dreaming up stories and characters, it can be tiring and sometimes I feel I'll never have another idea again. Amy and Sophie make it seem so easy, their drawings are colourful, imaginative and full of energy, I really hope to have their imagination when I'm older."

DRWF and Over The Wall hope to reintroduce venue-based camps for children with type 1 diabetes in 2022.

Sarah Tutton, DRWF Chief Executive, said: “The Camp in the Cloud event held earlier this year was really well received with 40 families - almost 150 people – attending the day. It was amazing! The concept of camp as a virtual experience allows us to reach those children with serious illnesses who may not be able to attend our physical venues due to a variety of reasons such as medical or mobility limitations.

“In the future, we hope to support families of children with type 1 diabetes through a mix of virtual and residential events allowing children to experience the mischief and magic of camp, regardless of the constraints of their illness.”

It is currently estimated there are around 29,000 children in the UK living with type 1 diabetes.

For these young people, quality of life can be adversely affected by isolation and their inability to participate in many of the everyday activities enjoyed by their friends and peers.

This often results in a growing lack of self-esteem and confidence which can become a barrier to future growth and development.

Personal story: Sophie Selfridge’s parents on adapting to life with type 1 diabetes one year on following her diagnosis with the condition aged eight

“Sophie was diagnosed with type 1 diabetes aged eight around Christmas time in 2020. 

“We had noticed she wasn’t herself on Christmas Eve; she seemed tired and not as excited as she should be before Christmas. This continued for a couple of days and on Boxing Day evening she was sick and became very poorly. After ringing 111 the doctor told us to call for an ambulance as he suspected she had type 1 diabetes. When we got to hospital her blood sugar was 36 and the ketones were too high to measure. It was terrifying to see how poorly Sophie became so quickly. There was also a feeling of tremendous guilt as to why we had not spotted this sooner.

“The hospital staff at Leeds Teaching Hospitals were all amazing and we can’t thank them enough for the care we received. Sophie spent a night in ICU (intensive care unit) and then moved to the ward where we had a steep and fast learning curve to comprehend how to carb count, monitor blood, give insulin and more so we could manage Sophie’s type 1 diabetes and be able to go home.

“This learning was further complicated by Covid-19 as only one parent was allowed on the ward so there was a lot of pressure on me while Sophie’s dad and older sister Amy were only able to join via video calls which were much tougher for them to hear and understand the information.

“We got home just before the third lockdown in January 2021. Something not to be underestimated is the space needed for all the “T1D stuff” you need, Sophie’s sister Amy was unable to have any face-to-face contact with Sophie while she was in hospital but wanted to do something for when she returned home. She cleared a whole cupboard ready for the new medication and equipment to live - it was a relatively small gesture but it received a really positive and emotional reaction from Sophie and me when we returned. 

“The third lockdown gave us some much-needed time together as a family where we could adjust to our new way of life without the pressure of school. The downside was we were quite isolated, and Sophie was not able to meet other children with type 1 diabetes or get support from wider family and friends.

“We are now adapting to our new life and living with type 1 diabetes. Sophie was getting quite upset about the injections and so asked to use a pump. As parents we were very torn by whether to use a pump or remain on pen injections, we understood the pros and cons but struggled to come to a decision we could stick with. Sophie was much clearer in her mind and although we discussed it as a family we understood Sophie’s reasons and she was fortunate to be issued with a pump. It has helped improve her quality of life immensely and has also meant she has been able to start enjoying some of the freedom she used to have, like going to Brownies. The pump and CGM (continuous glucose monitoring) are incredible but they don’t come without their issues. You become reliant on them which can result in high levels of stress when they don’t work. Also, changing the sensors and the cannulas are not pleasant experiences.

“The Leeds Children and Young People’s Diabetes Service at Leeds are a brilliant team who are very supportive and always available to help. But what we soon discovered was that we are the experts. Sophie, like all children, is unique, and although the hospital team helps us with things like school care plans and reviewing CGM data, we are best placed to manage Sophie’s care - a statement we couldn’t imagine saying only 10 months ago.

“Two months after diagnosis, schools reopened and our specialist nurse helped us set up a meeting with school to discuss the care plan. Sophie’s school has been supportive and she has a dedicated teaching assistant who helps with any care Sophie needs. School recommended we use a communication book where we add information school need to know and school enter details of insulin and any hypo treatments during the day. We think having a good communication system with school is really important.

“We are still learning, we are still dealing with lots of firsts and the variety and combination of variables that impact Sophie’s blood sugar levels. For example, we have noticed that “Sophie’s sugar levels rise, sometimes quite dramatically, when on car journeys. Although our hospital team hadn’t heard of this and didn’t believe it to be typical, our nurse helped us come up with a plan on how to deal with car journeys. Our hospital team has put us in touch with a local family who also have a girl recently diagnosed with type 1 diabetes. This friendship has been invaluable for Sophie as she was feeling very alone. It has also provided much needed support for the wider family.

“There are many support groups available, we prefer having a small network of friends rather than using social media but they are there for people who need them.

“We found out about the ‘Camp in the Cloud’ event on the Digibete app. We were excited to do it and enjoyed the day participating in activities as a family. Sophie and Amy both love drawing and thoroughly enjoyed the comic book session. They were delighted some of their creations were selected for a type 1 comic! 

“Now Covid-19 restrictions have been lifted [at time of writing] we enjoy spending time with family and friends. This was hard initially as it felt we were reliving those early days after diagnosis and trying to educate people on type 1 diabetes without making it the only topic of conversation. You notice how often children are offered sweets and biscuits and this can be upsetting for Sophie as she knows she needs to check before eating them. 

“We want to enjoy all the activities we did before and for type 1 diabetes not to dictate our lives. We have started eating out more; we still don’t feel confident estimating carbs so we take our portable scales with us. We are getting better at knowing what we need to take with us and we have realised planning ahead is important. That said, we have also learnt that no two days are the same! We know we still have more firsts to come, but we are proud of where we are now, almost a year after diagnosis.”

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