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.

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.

A highlight of the project was a parliamentary event on 11 December 2017 chaired by Jenny Gilruth MSP. Guest speakers were Professory Bryony Beresford and Dr Lorna Fraser, authors of ‘Children In Scotland requiring Palliative Care’ (The ChiSP Study). The event was attended by 12 families of children with exceptional healthcare needs.

Further to the parliamentary event the Exceptional Families Project has provided input to the Scottish Government’s ‘Framework for children with disabilities’.

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 [email protected]

You can view our latest Newsletter here and read Claire’s latest blogpost online.

Laura Macalister with daughter Kaia and son Riley*

Laura McCartney with son Tom, and Jenny Gilruth MSP at our 2017 Parliamentary Event*

Claire Edwards heads up the Exceptional Families project

*Photo credit:
Malcolm Cochrane Photography for Kindred Advocacy courtesy of Inspiring Scotland

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We gratefully acknowledge the support of the following funder: