Improving the lives of children with diabetes
A team of diabetes nurses has been shortlisted for a prestigious Nursing Standard Nurse Award for developing a self-care toolkit and education programme for children and young people with type 1 diabetes.
Claire O'Connor (pictured right): health education for young people via their phones. Picture credit: John Houlihan
The team from Pennine Care NHS Foundation Trust (PCNFT) has co-designed a website and app with their young patients to reduce long-term complications from their condition and put them firmly in the driving seat of their care.
Their work - Sugar3 (cubed) – has earned them a place in the final of the Sonofi Excellence in Diabetes Specialist Nursing category of the Nursing Standard awards. They will find out if they have won at a ceremony at the Savoy Hotel in London on May 1.
Type 1 diabetes is not preventable and can have serious life-threatening consequences if not managed properly. In March, the latest National Paediatric Diabetes Report audit showed a worryingly high number of young people aged 12 and over showing early signs of potentially serious complications.
With better education, children and young people can reduce these complications. To achieve this, children’s diabetes specialist nurse Claire O’Connor and her team of five have been developing Sugar3 since September. The team is 'totally overwhelmed' to be named as finalists. ‘We were really pleased just to be nominated,’ says Claire,’ but to make the make the final is amazing. We are really looking forward to it.'
The team realised that the best way to deliver education to children and young people was through their phones and the internet. ‘It is difficult to get young people away from their phones – even in clinic,’ says Claire.
Sugar3 has three interfaces covering age groups 6-10, 11-14 and 15+ years to ensure the fully tested educational materials match the children’s needs and that the resource grows with them.
The children are registered with the nurse on the site and app and then can use them securely. Modules include stress management and emotional wellbeing as well as more clinical aspects of their condition.
There is a personalised dashboard, so children can track their learning and reports on self-assessment questionnaires can be sent to their nurse. For Claire, this will be vital to ensuring that the young people really understand the different aspects of their condition and how to manage them.
She says: ‘If they haven’t understood something properly we can address it the next time we see them.’
As part of the project, a face-to-face education programme developed with the Queen's Nursing Institute will be rolled out. Children can refer to Sugar3 afterwards. ‘For example, a teenager might be planning to go out drinking with his mates and he can check how to manage that on his phone,’ says Claire.
And it is not just educational - Sugar3 gives children and young people some control over their care. They can have Skype consultations, request appointments and use email for questions and support.
Sugar3 has been co-designed at all stages, with children with type 1 and their parents as equal partners in decision making, to ensure quality and that the site and app will work for those who use it. Children and parents sit on the steering group and provide regular feedback to the project team.
Lucy Marsh’s youngest son Luke is nearly seven years old and was diagnosed with type 1 diabetes aged three. She has been participating in the development of Sugar3.
‘I was involved from the beginning, the first meeting, when ideas were being thrown around,’ she says. ‘It gave me a chance to speak on behalf of Luke, what he enjoys, what he doesn't like, what he needs help with in terms of his diabetes and also what would have been useful if it had been available when Luke was first diagnosed.
‘The app grows with the child/young person, and content is age-appropriate and they can move through the levels. It has the ability to get us all talking about diabetes within the family but also gives Luke a place to go and have any worries or concerns he might have answered.’
PCNFT executive director of nursing and allied health professionals Ian Trodden is delighted that Claire and her team have been shortlisted for such a prestigious award.
‘They have used their experience and knowledge, coupled with feedback from service users, to develop a truly innovative solution to supporting children and young people with type 1 diabetes. This is a real example of clinical excellence and innovation that will enhance the fantastic care and support already delivered by the team.’
The Nurse Awards judges agree. London Northwest Healthcare NHS Trust diabetes nurse consultant Grace Vanterpool praised the team’s holistic approach to the care of their patients. ‘They are ticking all the boxes of keeping people out of hospital and reducing short and long-term complications by improving self-care and management,’ she adds.
The judges also praised the way the team had ensured children and young people were involved all the way through the website and app’s development. Steve Jamieson, then RCN head of nursing, comments: ‘Kids use their phones all the time so this is the right way to get through to them. This team is enthusiastic, motivated and excited about their project and what it could achieve.’
The launch will not be the end of the team's work. ‘Even after we launch we want to carry on improving the site and adding information so it is the best quality that it can be,’ says Claire.
‘We want it to improve the self-care and decision making of young people with type 1 diabetes. They have to make so many decisions every day and we want to help them make decisions sound and well and give them the evidence on which to make them. It is all about improving their quality of life.’