Summary
Investing in Children creates spaces for children and young people (CYP) to talk about their care. Since 2001 it has worked with CYP living with Type 1 diabetes and their families throughout the North East and North Cumbria. The Type 1 Kidz (T1KZ) group provides monthly group sessions, day trips, cookery workshops, and an annual residential trip. The aim is to help CYP feel more confident and positive about the future and improve their health outcomes. The Facebook group has over 1,100 members.
Innovation/Novel approach to an existing problem
In 2001, the Diabetes Group was created to allow CYP with T1 Diabetes to meet up and have input about the care that they received in County Durham. CYP and their families wanted a space to come together and support one another away from the hospital setting, designed by them, but with support from and dialogue with clinical teams. Investing in Children created T1KZ. It provides monthly sessions for families to come together, learn from one another, build confidence and improve outcomes. The local Diabetes Network wanted it to be offered more widely and funding over the last six years has enabled it to be rolled out across the whole of North East and North Cumbria. Families wanted to try new things in a safe environment, supported by others and their medical team. Sessions have included sports, swimming, cooking workshops, newly diagnosed days and more. There are also quarterly sessions catering for specific needs, plus an annual residential trip. For families not attending sessions there are online sessions, as well as a closed Facebook Group.
Equality, Diversity and Variation
Sessions are offered throughout the region to ensure activities are accessible for all. They are free to attend and transport can be provided. The project works with CYP of all ages up to 18, with opportunities for young people to become young facilitators. Three sub-groups have been created to meet the needs of all: Under 7s sessions, in soft play areas and sensory rooms; teen sessions, such as driving experiences, go-karting and climbing; plus additional needs sessions for any CYP with Type 1 and an additional need, where families meet in a smaller, more accessible place. CYP have chosen to visit sensory spaces, parks and a therapeutic pony day. Taking part in activities builds confidence and allows learning from others, ensuring CYP can be confident and take part in day-to-day activities with peers. Those CYP and families anxious about joining in with hobbies, school trips and school residentials have gained confidence to participate. T1KZ is a partner in a regional project providing refurbished NHS mobile phones and laptops to families to support the use of diabetes technology. This programme is open to all families in the North East and North Cumbria, but most referrals received during the pilot project were for families living in the most deprived areas.
Impact to Patient Care
The project has given families knowledge and confidence, through shared understanding, sharing knowledge and trying new things, improving care and outcomes. Families say that it is useful to see and discuss different diabetes technologies. Sessions are based on what CYP and families want to try. Bringing families together across the region has allowed them and clinical teams to share best practice and improve patient care. These conversations are supported by quarterly meetings between the T1KZ Steering Group, comprising clinical champions and the young people's Coordination Group. This year funding has been received from The Children and Young People's North East and North Cumbria Diabetes Network via the Best Practice Tariff, further embedding the project into clinical teams across the region. This funding means each clinic can apply for and access the Investing in Children Membership Award which supports, recognises and celebrates teams having dialogue with CYP and making positive changes. Family queries via the Facebook Group receive fast responses from staff and healthcare professionals. T1KZ staff also support families to speak to clinical staff about challenges. Meeting outside of clinical settings has allowed clinical staff to see the day-to-day reality of life with diabetes. Clinical staff and families to get to know each other better and improve partnership working. Raising awareness about Type 1 Diabetes in schools to help address stigma has helped others to identify the symptoms of Type 1 Diabetes and seek a diagnosis. The technology project has allowed more CYP to accessed diabetes technology.
Results
A total of 20 group sessions were run, involving 156 CYP with Type 1 Diabetes, 77 siblings and 186 parents. To raise aware of diabetes in school six school assemblies were arranged for 1,499 children and young people and 14 teaching staff. For families wanting access to online support a Facebook group was set up which has 1,150 members. Over the last six months there were 913 active members, 167 posts, 639 comments and 741 reactions. The project has enabled CYP to have a say about their care, leading to positive changes in the clinics. Clinical teams have achieved, or are working towards, their Investing in Children Membership Award. This leads to good experiences and outcomes. There are also regional-level events, such as newly diagnosed days and information sessions, which mean all clinical teams and families can be involved. This minimises NHS costs and capacity for clinical teams. The activities have improved quality of life, given CYP the same opportunities as their peers without diabetes, and supported them to gain skills and knowledge.
User Feedback
The project is overseen by a professional Steering Group comprising a 'Type 1 Kidz Champion' from each of the nine clinical teams in the area (including health care assistants, nurses, consultants, dietitians and psychologists) complemented by the Young People's Co-ordination Group. In the last six months both groups have met every three months to promote continuous feedback between the project, families and professionals. Anonymous feedback is requested via paper forms, whether they attend or not, which gives an unbiased view of the project and any barriers to access. Feedback is also requested after each session and on an annual basis. Results are used to shape and drive the project forward.
