Regional networks for Children and Young People with Diabetes have been very successful at engaging parent representatives to support the networks and to help clinicians listen to the views of parents and users of services. It was agreed that the Children and Young People’s East Midlands Diabetes Network (CYPEMDN) and the Children and Young People’s West Midlands Diabetes Network (CYPWMDN) should have a higher level of user involvement and they began using Skype to support parent representatives. These calls take place before the quarterly business and education meetings and allow parents to feed into the agenda and obtain the views of other parents across the region via social media. There is then a follow-up Skype meeting afterwards to go through any issues arising.
Diabetes is a 24/7 condition and the time that children and young people spend with clinical staff is minimal - on average 5 hours per year. However, the parents and carers live with this for the remaining 8,755 hours in the year. There is an obvious need to improve the care for children and young people with diabetes, which means everyone needs to be working together to the same aims and goals to ensure that our children lead healthy and fulfilling lives.
The CYPWMDN and CYPEMDN wanted a higher level of engagement from the parent representatives and for them to feel supported. This would mean involving them with discussions on the agenda, and to give them the opportunity to present at these meetings to a wide range of clinical staff and to have their views represented and listened to.
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