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.

Criteria for a child with exceptional needs:

enteral/parenteral feeding plus at least 4 other impairments (learning, communication, motor skills, self care, hearing, vision), lasting six months or more 
require ventilation/CPAP and at least 2 other impairments (learning, communication, motor skills, self care, hearing, vision), lasting six months or more.

EFP is funded by The Henry Smith Foundation and the 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;
  • to inform professionals about the experiences of CEN parents through events and training.

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.

Mum Laura peg-feeding Kaia, her teenage daughter

Above: Kaia with her mum Laura 

We have held information events in Glasgow, Aberdeen, Inverness, Edinburgh and Fife. Our steering group of parents meets four times a year. We produce regular e-newsletters. Over two hundred families have been supported by the project with information, advocacy and emotional support.

Claire Edwards, pictured below, is an independent practitioner 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 [email protected] 

You can view our latest Newsletter here .

Photo of Claire Edwards, Exceptional Families Project Lead

Above: Claire Edwards, lead for Exceptional Families Project