Investing in Children (IiC) is an organisation concerned with the human rights of children and young people (CYP) and believes each should have a say in all matters affecting them to bring about positive changes. IiC has facilitated the Diabetes Project since 2001 and enabled CYP to discuss the care that they receive. While supporting CYP to have their say in their medical care and the service provided by the Paediatric Diabetes Team in Co. Durham and Darlington, it became apparent that the CYP and parents appreciated the support they received from each other. Therefore, IiC started to facilitate a monthly group session in October 2012, named Type 1 Kidz. This allows CYP to meet and have discussions, take part in activities and learn from each other, improving health outcomes and enabling them to feel in control. IiC secured funding for two years in 2013 to disseminate the project to Gateshead, Newcastle, Sunderland, South Tyneside and Cumbria. After this, CCGs funded the work and funding is in place from Children in Need until August 2020 to deliver the project in all areas. Families’ fundraising efforts generate nearly £10,000 per year.
Get the latest updates
In the six areas where IiC works there are approximately 1,500 CYP living with type 1 diabetes (T1D). The North East and Cumbria have some of the poorest outcomes in the UK, including the highest incidence of diabetic ketoacidosis (DKA). Paediatric diabetes teams had many CYP not engaging with their care, resulting in higher unplanned hospital admissions, as well as more potentially avoidable complications. As an independent organisation IiC could offer the project away from a clinical setting, which young people said they preferred. The plan was to set up an initial group within six months and then expand to have groups in each area within two years. The time frame and milestones were quite broad and long term to ensure a good quality and sustainable project was delivered. The CYP were involved in all discussions and planning and decided on the outcomes they would like to achieve, resulting in greater engagement from all groups. CYP were trained to become ‘Young People Facilitators’, which included safeguarding training. Families attending diabetes clinics were engaged with face-to-face in the waiting room to help grow the projects. A website, Facebook page and Twitter account were created. This approach was taken for all of the groups across the regions. It is mainly the Young People Facilitators, project staff, volunteers and clinical teams who facilitate part of the sessions, but other charities and organisations may be involved. The Young People’s Steering Group worked with its peers to create tools to measure outcomes which are used throughout the project. Newcastle and Sunderland Universities assisted with this.
In the past two years 198 CYP with T1D attended a group session, along with 300 family members. This represents an increase of 41% in the past 18 months (58 more CYP) and a 10% increase in the last six months. The project has engaged with an average of 22% of the patient population (range 13%-42%).In January 2018 Sunderland University’s evaluation found that when looking overall at the ten indicators CYP wanted to improve, those who attended often scored significantly higher on the ‘confidence/knowledge’ scale than those who has attended less. The indicators were: general understanding of T1D, how diabetes affects the rest of the family, diabetes treatment options, hypoglycaemia, hyperglycaemia, diabetes and illness, diabetes and exercise, food and carb counting, managing diabetes by yourself and making changes to insulin doses and being confident about the future, plus overcoming challenges in relation to diabetes. Many CYP reported improved self-esteem and a belief that they could achieve better things. The sessions helped CYP discuss the future and their hopes and worries. Diabetes reps came to discuss advances in technology and talk about how things might be better in the future. Improved health outcomes are a long-term and ongoing aim. There have been many examples of immediate improved health outcomes: one child said after a session about hypoglycaemia he now treats his hypos well; another attends a weekly karate class after trying martial arts in the group session.The aim is for CYP to become resilient, confident young people and adults who can manage diabetes well throughout their lives and have improved long-term outcomes.
Sustainability and Spread
The project has grown and expanded into more geographical locations and other services by successfully applying for longer-term funding, plus fundraising efforts. Funding has been provided by Durham CCGs since 2001 and a Children in Need grant is in place until August 2020. Sunderland CCG has also supplied a grant to work with YP (aged 15-19) until March 2019. Additional funding and donations have allowed the recruitment of a parent facilitator and a specialist nurse to extend parental support. There is continued commitment from nurses and consultants at sessions. A volunteer driver brings CYP to groups and has been successful in engaging hard-to-reach young people. Children, young people and parents complete evaluation questions, provide feedback forms and give their views on camera in a ‘diary room’. The project has spread to five other regions, reporting high levels of engagement with families. The initiative has been shared with other clinical teams throughout the UK. IiC has also spread its peer support approach to ‘Y-ASC’, its drop-in café for young people transitioning from children’s, to adults’, mental health services. Outcomes are communicated through membership of local networks, applying for awards and presenting at conferences. For families there is a Facebook group, a website, a Twitter account and a quarterly newsletter.
Back to the top