Summary
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.
Results
Parent engagement in the regional networks has been achieved and these Skype meetings have been very successful from all points of view: the parent representatives have a slot on the agenda and have been able to present their roles and what they wish to achieve to both networks and actively take part in the meetings with the clinicians. Facebook support groups for both networks for parents and carers from across the region have been set up to access information and support and provide a way to feed into the network discussions via the parent representatives. The numbers of parents and carers that can be reached is growing daily: 182 members on the East Midlands Network Facebook page and 180 on the West Midlands Network Facebook page. Meetings are summarised and posted onto the respective Facebook pages and therefore reach a large number of people. A Twitter account for the national network and a joint one for the CYPEMDN and CYPWMDN have been set up in an attempt to engage parents and carers who are not on Facebook.
Challenge
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.
Objectives
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.
Solution
The CYPEMDN and the CYPWMDN networks implemented the use of regular Skype meetings to ensure contact, views and help is offered and available in a timely fashion. There is also regular email contact between the parent representatives and the network coordinator with the use of sharing information that is useful to both parties.
Learnings
Parents need to feel supported and valued members of the networks. They are not healthcare professionals and sometimes the pace and language of network meetings can be confusing, so by introducing this method the team has been able to help all members understand the importance of agenda items and discuss terminology from this. Clinicians are also very supportive of having parent representatives on the network and value their opinions. It helps to focus the minds of healthcare professionals on what is important for families and children with diabetes and how they can maybe do things differently. Engaging parents in the network and gaining their valuable views on guidelines, national developments, patient involvement and information will help develop and improve services for children with diabetes. Now the aim is to engage children and young people and onto the work programme for both networks.
Evaluation
A parents’ survey has been designed by the network coordinator with support and feedback on the questions from the parent representatives. The cost of this initiative is solely time, as all members have a laptop and Skype installed. Meetings generally occur during the working day although there is flexibility with this. This model can be replicated across any network as desired.
