Dear Parents and Carers

Since I was first in touch about our Exceptional Families project, we have been busy establishing the team and steering group. I have also spoken with a number of families across Scotland to hear about their experiences and am looking forward to doing more of this from September onwards – perhaps I could meet you at one of our Roadshow events? There’s more about the Roadshows and the project team in the latest edition of the Exceptional Families newsletter.

What I really wanted to tell you about is that even in these early stages of the project I have been struck by the generosity of families: after all making time to tell me about your lives doesn’t necessarily bring any benefit to you. The project’s aim is a long term one: that what we learn is shared and will influence practitioners and policy makers as the project presents its findings. Yet the parents and carers I met were keen to contribute right now – no one was looking for an immediate reward other than knowing their experience and ideas could help support other families in similar situations to their own.

For instance, in June, I spent some time with families in Inverness and the Black Isle. Fiona Shevill, a Complex Needs Social Worker, kindly introduced me and even drove me to visit them – what a star! Each family talked about the challenges they encountered. Many of the themes that arose were the same for families of children with exceptional health care needs generally, but with the added issue of accessing services in rural areas. The openness of the parents I spoke to is so appreciated. Getting to meet their children and young people and hear about their lives was also a pleasure and a privilege.

I also met with two foster carers to hear about their experiences. Both were very clear that whilst they shared some of the experiences of parents (such as a deep emotional connection with the children in their care), they recognised there were important differences. It was also pointed out that many foster carers begin by offering respite to families and then go on to develop strong and positive relationships with the parents and siblings as well as with the child. My thanks go to Margot Gillon (Team Leader for Foster Carers in Edinburgh) for introducing me, and to the carer’s themselves: I really valued the time they gave me and their perspectives as foster carers.

 

Claire Edwards heads up the Exceptional Families project

 

The new Exceptional Families newsletter is out: read about Roadshows coming to you, the team and much more!

Many parents, carers and family members have contributed so much to the capturing of stories and themes already in these early stages of our project. This will help us achieve one of our aims: to build a more complete picture of what it’s like for families of children with exceptional health care needs across Scotland, and to highlight what measures could be put in place to improve the quality of life for the children and their families.

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 [email protected] 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).

In partnership with:

We gratefully acknowledge the support of the following funder: