Dear Parents and Carers

Welcome to our third edition of the Exceptional Families Newsletter.

It has news from our two recent events: our “Getting it Right for Parents of Children with Exceptional Healthcare Needs” round table discussion hosted by Jenny Gilruth MSP at the Scottish Parliament, and our information event “The role of Self-Directed Support in your family’s health and wellbeing” at Charlie House in Aberdeen.

There’s also news of our next Steering Group Meeting planned for 27th February 2018 – please get in touch with me if you would like details of the venue and timings which are still to be confirmed. You can email me at or text me at 07713355460.

Perhaps you feel you also have a story to share? If you want to express your interest in being involved with the project as a parent or foster carer of a child with exceptional healthcare needs, or simply want to know more about it*, please get in touch:
Email me at or text: 07713355460 and I will arrange a time to call you that suits you and we can have a chat.

*If you have only just found about the Exceptional Families Project you can read my first blogpost here – it will tell you all about my involvement with Kindred and the National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN), who are our partners in the project.

The focus for CEN is families of children with enteral/ parenteral feeding (‘tube feeding) and/or ventilation/CPAP as these are the children with the highest healthcare needs in Scotland. There are estimated to be 396 children nationwide requiring this level of medical support. However, the project is also interested in the experiences of families from the wider population who have of children with complex needs (estimated to be 7200 in Scotland).


Claire Edwards heads up the Exceptional Families project


The new Exceptional Families newsletter is out: read about what the project, including parents and exceptional kids, have been up to!

In partnership with:

We gratefully acknowledge the support of the following funder: