Dear Parents and Carers

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

What a summer that has been! Some amazing weather that even lasted through the kids being off school. The challenge of the long weeks of changed routines and issues around childcare for many of us.

Joe had over ten weeks from his college (for students with additional support needs) requiring me to organise activities and supervision every day. I took him to London for a weekend, ‘mum and son time’ as he called it. We managed quite well in the 35 degree heat, saw a show in the West End and went on the big wheel. He loved the show (‘Disney’s Aladdin, the musical’ – like a supersize panto) but was singularly unimpressed with the wheel. Thank goodness we got in through special assistance because if we had waited an hour for that reaction I’d have been far from happy!

I know that for many parents not only are the holidays a challenge but so is the start of term. I hope that things have gone smoothly for you all – I can hope. Congratulations to all those children starting school for the first time, moving up a year, starting high school, moving up and entering their final year. I hope you have a really great year ahead.

You can catch up with what our Exceptional Families Project has been up to in our latest edition, including:

If you want to know more about anything in this post or the newsletter please contact me: and I will get back to you.

Here’s to pumpkins and munchkins and warm evenings with family and friends.

Claire Edwards
EFP parent consultant

*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).

Don’t be fooled by the t-shirt … This is Joe cooling down in London whilst mum Claire takes the photo



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Welcome to the Spring edition of the newsletter