Two leading charities are delivering a pioneering new programme for young people living with type 1 diabetes.
The Steve Morgan Foundation has donated £5 million to Diabetes UK Cymru to deliver a UK-wide peer support programme to thousands of young people living with type 1 diabetes across the UK as they transition to adulthood.
Entitled ‘Our Lives, Our Choices, Our Voices’, the scheme will be available for young people aged 11 to 25 and will be the first of its kind to be rolled out in-person and online across the country.
Driven by young people’s experiences and needs, the programme will support young people with type 1 diabetes and their families to:
Increase knowledge and confidence on how to best manage type 1 diabetes – resulting in better health and wellbeing
Reduce feelings of isolation and loneliness by developing strong peer support networks
Improve relationships with healthcare professionals (HCPs) by empowering children and young people to communicate effectively with HCPs resulting in better treatment, care, and transition to adult services.
There are more than 15,000 people living with type 1 diabetes in Wales, and around a fifth of these are aged 25 and under.
For these young people, life with type 1 diabetes can be relentless, and many young people with type 1 diabetes report feeling down about their condition, that they don’t feel in control, and that it’s holding them back.
Many feel isolated because of their condition, often having never met another young person with type 1 diabetes.
A diagnosis of type 1 diabetes also impacts the families and loved ones of children and young people with the condition, with parents or guardians often feeling isolated, anxious and exhausted.
Sara Crowley, age 34, from Aberdare has lived with type 1 diabetes since she was three years old. She is the Transitional Care National Coordinator NHS Wales Health Collaborative
She said: “I was reluctant to engage with my diabetes during my teens and early twenties. I now realise I suffered from burnout and a diabetes-related eating disorder.
“I had very little headspace, clinical help or support from others with the condition. I signed up for a Diabetes UK Cymru event in 2014. It changed everything for me.”
She added: “It wasn’t long before I was looking to meet others like me, who understood the challenges we face every day.
It sounds cliché, but something special happens when you bring young adults living with type 1 diabetes together and offer a safe space to explore what it actually is like to live with it.
“The appointment of these roles at Diabetes UK Cymru focused on youth work is brilliant news for young adults living with diabetes in Wales.”
She concluded: “Managing type 1 diabetes is a relentless task, particularly when you are growing up and going through life transitions all happening at once. This programme offers opportunities that can be truly life-changing.”
Made possible by the generosity of the Foundation, and driven by the vision of its founder, philanthropist Steve Morgan, the programme will offer an integrated, youth-led approach to supporting families affected by type 1 diabetes.
Diabetes UK will work with local partners, communities, paediatric diabetes units and the health system to offer a combination of local and national support services.
Chris Askew OBE, Chief Executive Officer at Diabetes UK, said: “Growing up can be tough, but thousands across the UK also have to manage a serious and relentless condition – often without meeting or sharing their experiences with other young people like them. It’s time to change this.
“Our Lives, Our Choices, Our Voices will be transformational for young people with type 1 diabetes, connecting and empowering them, and giving them back control.”
He added: “We’re incredibly grateful to the Steve Morgan Foundation. Through this partnership we will support young people and their families across the UK, equipping them with the tools, support and community they need to navigate the highs and lows of this lifelong condition.”
Steve Morgan, and his wife Sally, are driven by their personal connection with the condition. Sally’s son Hugo was diagnosed with type 1 diabetes at the age of seven.
Steve and Sally Morgan said: “We know from our own experience the impact that type 1 diabetes has on family life – it’s something we carry with us every day. But we also know that young people across the UK don’t have easy access to the support they need to navigate the highs and lows of life with this condition.
“It is so important for young people and their families to have a safe space where they can share their experiences of this relentless condition, helping to feel a little less alone on bad days, and to celebrate the successes of the good ones.”
They added: “Our Lives, Our Choices, Our Voices will connect thousands of children and young people across the UK, providing a community that will help them feel less isolated because of their condition.
“We’re proud to be partnering with Diabetes UK to deliver something special which we hope will genuinely change the lives of thousands of young people with type 1 diabetes across the UK for the better.”
This funding is in addition to the historic, game-changing £50 million partnership between Diabetes UK, the Steve Morgan Foundation (SMF) and JDRF UK which was announced earlier this year.
The Type 1 Diabetes Grand Challenge aims to drive forward type 1 diabetes research, and pave the way for the development of new treatments and a cure.