Dear Parents and Carers

Welcome to our fourth edition of the Exceptional Families Project (ExFP) Newsletter.

Well, I don’t know about you but this has felt a hard slog to spring…and it’s not even guaranteed that we are there yet! The snow brought everything to a standstill and my desire to hibernate and sleep through the first quarter of the year has probably never been greater!

In the last newsletter we reported on the Parliamentary event – a real success and with a positive feel about it. Hard to maintain that feeling as we hit the post Christmas slump but we can move forward now to build on the connections and energy of that coming together of families and professionals. We made a friend in Jenny Gilruth MSP and I am confident we can look to her to champion the cause of families with exceptional healthcare needs on into the future.

The steering group met in February in Camelon in the Forth Valley Multi-Sensory Centre (well worth a visit if you are in that area) and part of our discussion focused on developing a charter. For more information and a chance to contribute see the feature on the ‘top 6 messages for professionals’ in this newsletter.

Our next information event will be in Inverness on the 1st May at the Birnie Centre. Fiona Shevill, Complex Needs Social Worker (don’t we wish there was one of those in every Health Board in Scotland?) is helping us to organise it. If you live in the area and want to know more contact me: [email protected] and I will report back on it in the next edition of the newsletter in June.

Here’s to longer days, sunshine and maybe even some warmth soon!

*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).

In partnership with:

We gratefully acknowledge the support of the following funder:

Welcome to the Spring edition of the newsletter