SERVICE DETAILS
The Exceptional Families Project (EFP) is a partnership between Kindred and Children with Exceptional Healthcare Needs, National Managed Clinical Network (CEN NMCN). Any parent of a child with exceptional healthcare needs is welcome to join the project. Please feel free to get in touch and find out more about our project for parents.
Due to the Covid-19 pandemic situation with additional anxieties and challenges it brings, Kindred has set up a closed Facebook group for parents to help them share experiences and advice for mutual support. The value of learning from each other and the risk of isolation are widely recognised. If you are a parent and are interested in joining a closed private Facebook group for other parents of children with exceptional health care needs please let us know. You will then receive an invite, which is the only way the group can be accessed. The closed group is moderated by Kindred’s project lead Claire Edwards.
Due to the Covid-19 pandemic situation with additional anxieties and challenges it brings, Kindred has decided to take this forward. They will provide ongoing moderation of the closed Facebook group and parents can join by emailing Mel and Claire at exceptional.families@kindred-scotland.org.
EFP is funded by The National Lottery Community Fund and Scottish Government and has been running since December 2016. The project provides individual support for families, and also connects families to the work of the CEN NMCN.
The project aims are to:
- Give parents the opportunity to share their experiences and to use this valuable information to shape policy and provision;
- Deliver a range of engagement events which allow families to network with each other, find out about CEN, and access useful information;
- Develop a national parent forum, connected by an e-newsletter;
- Provide individual support to parents of CEN which includes applying for benefits, accessing grants and advocacy for statutory care and support;
- To encourage parents to participate in the Clinical Audit System and join the CEN network.
An active steering group has been developed for this project with a diverse membership of professionals and parents caring for a child with exceptional healthcare needs.
We have held information events in Glasgow, Aberdeen, Inverness, Edinburgh and Fife. Our steering group of parents meets four times a year. We have produced five e-newsletters. Over two hundred families have been supported by the project with information, advocacy and emotional support.
Claire Edwards – an independent practitioner has been employed by Kindred to lead on the delivery of this joint project.
If you would like to be involved, find out more about this project and receive regular updates please contact Claire Edwards at exceptional.families@kindred-scotland.org.
