Summary
This project is a co-production between commissioners and providers working with The South East Coast and London Paediatric Partnership parent group, part of the National Children and Young People’s (CYP) Diabetes Network. Its aims included sharing decision making during clinical consultations, involving patients in the design and commissioning of future health services and evaluating their care. The parent and CYP representatives group initiatives took in the creation of a closed, monitored Facebook group for parents, organising meetings for families to come together to share experiences and offer peer support and dissemination of surveys seeking parent views and information for parents. This has led to more knowledgeable, satisfied families who come together to offer support to other parents and feed back to providers of paediatric diabetes services.
Results
The numbers of parents attending the meetings have continued to grow (ranging from 35 to 70 parents and between 22 to 35 children). The surveys conducted through the parents group have been very successful with 581 participating in the OOHs survey and 613 in the Outcomes survey nationally. The findings are disseminated to all interested parties including CYP and parents, all diabetes teams, NHS England, CCGs and specialised commissioners. The Facebook group has 499 members.
Challenge
The SEC and London Paediatric Diabetes Partnership represent the paediatric diabetes teams of the 46 NHS Hospitals in London and South East Coast, working together to improve paediatric diabetes care and share good practice. Prior to the network coming into existence there was evidence of variation in outcomes and consistency of care. Parents received differing information and did not always know who to approach for advice. Variation in outcomes was demonstrated by the National Paediatric Diabetes Audit and variation in care and consistency of advice was reported by parents on existing parent forums such as the Children with Diabetes email support group and at DUK support groups for parents.
Objectives
To recruit 4 parent representatives to work with the SEC & London Partnership to offer co-produced solutions and seek feedback on service improvement initiatives and help improve outcomes for CYP with diabetes. To improve engagement with families. To facilitate a supportive environment.
Solution
The job description developed in 2011 has since been used in other regions to recruit parent representatives. SEC and London includes 46 hospitals, so to ensure as many parents and families could be reached, the parents set up a moderated Facebook group providing a regional forum for parents to link with other local families, share information and concerns. The Partnership organised its first meeting for families in June 2013 at the Education Centre at UCLH. Over 50 parents and 22 young people attended. The meeting was advertised through all the clinics with posters and flyers. Play specialists from UCLH supported the meeting by supervising a room for the younger children. The meetings now occur every 3 months across different locations and the team has introduced a children’s panel to answer questions from the floor about their experience of living with diabetes. Best practice between clinics is shared, enabling parents to support their local diabetes units to make improvements. Parent representatives have designed surveys to seek views on various issues, which have been administered through the SEC and London Partnership by the Network Manager. Parents have presented the analysis of both surveys at the SEC & London Annual Stakeholder meeting and the National Network meeting.
Learnings
A key benefit for parents of children with diabetes is the peer support offered by both the Facebook group and the meetings. Sharing experiences, ideas, tips and information is invaluable to families coming to terms with diagnosis and learning to live with a challenging chronic condition. Many parents have commented that listening to the children’s panel is the high point of the meetings as they provide an insight into the experience of living with diabetes which parents cannot always gain from their own children especially the very young ones. The children have provided a positive and stoical attitude and repeatedly demonstrated a level of maturity which is deeply reassuring. They are always able to identify positive aspects to living with their diabetes including an increased understanding of others and opportunities, like taking part in the children’s panel, which would not otherwise have been open to them. Their role in the meeting increases their confidence and helps them to develop useful skills which will transfer to other areas of their life. Both the Facebook group and the meetings have also offered learning opportunities for health care professionals who can seek feedback from parents in the region via surveys and questions.
Evaluation
Parent representatives have designed surveys to seek views on issues such as 'out of hours' (OOH) care and which health outcomes are important to families. The feedback has been used to plan and improve local services.
