Kate Fazakerley, spoke to our parents of children with type 1 diabetes group at Thriveabetes on October 3rd. She is not only mum to Isobel, who was diagnosed with type 1 diabetes at aged 2, and Dominic. She is also the chairperson of a group called The Families with
Diabetes Network.
What is The Families with Diabetes Network?
They are a group of parent representatives from each region in the United Kingdom. They all have children with diabetes and all attend regular meetings with representatives from hospitals in their regions to represent the views of families living with diabetes.
These meetings are a part of the NHS' National Children and Young People’s Diabetes Network, which was set up in 2009 and consists of 10 regional networks each chaired by a lead clinician.
Each regional network includes all the paediatric diabetes clinics in that region, with their multi-disciplinary teams, as members. The aim of the Network is to implement the nationally agreed Improvement Plans including the various aspects of the Best Practice Tariff and peer review.
They are run independently and managed by parents. They meet twice a year at the National Children and Young People’s Diabetes Network meeting and regularly throughout the year by Skype.
Kate says the parents are now quite engaged in the paediatric clinical networks in England and it really began with parents volunteering, as I did, to represent patients at their local hospitals by attending meetings with the clinical team such as the meetings that Dr. Kevin Moore is holding with his team in Tallaght Hospital.
"As our parents were becoming organised, clinicians who were keen to improve the standard of care across the country, started to organise themselves into regional networks meeting up and liaising with their colleagues from other hospitals to try to identify and share best practice and the parent reps went with them becoming regional reps.
We compare the outcomes such as average HbA1c across different hospitals so we can see which are doing well and which are not."
Future plans for the Families with Diabetes Network
During 2015, they will be collating feedback from families on the new NICE guidelines.
They will submit articles to the journal, Diabetes Care for Children & Young People, based our surveys and work on transition.
They will, also, work with the National Network to produce a competency framework for transition and they will continue to promote Diabetes UK's "Make the Grade" and "4Ts" campaigns and the DLA Toolkit.