A report on the Exceptional Families event at the Scottish Parliament, by Claire Edwards, Kindred Consultant.

 

Parents, Kindred and CEN staff of the Exceptional Families Project

On 11th December the Exceptional Families Project was delighted to hold an event at parliament, hosted by Jenny Gilruth MSP.
 
The focus of the event was to hear the experiences of parents of children with exceptional healthcare needs and we were honoured to have over a dozen parents in the audience as well as two children, Benji and Tom.
 
There were two fantastic parent speakers, their presentations shared some common themes but also powerfully demonstrated the individual and personal impact of their particular circumstances.

Gael Gordon, Phd, talked about being the mother of Romi and some of the challenges they face as a family.
 
Gael talked about ‘becoming Romi’s mum’ and the loss of her identity in her own right but also how very much she appreciated the neurologists who acknowledged how much she and her husband are ‘experts in their own child’.
 
Her presentation can be viewed here Parent Perspective, by Dr Gael Gordon

Dr Gael Gordon shared her experiences as a parent

Laura McCartney, whose son Tom joined us with his father, spoke passionately about the medical procedures that he has had to endure and gave a vivid portrait of their day to day life.
 

Laura has been diagnosed with PTSD (post traumatic stress disorder). She described the state of heightened vigilance that comes with living with the responsibility for such high levels of care including medication, 24hr monitoring and unplanned admissions that are feature of life for them as a family.

Dad Colin, son Tom and mum Laura McCartney

Gael and Laura’s stories bookended the presentations by the two researchers from York University who produced the CHiSP report, Dr Lorna Fraser and Professor Bryony Beresford.
 
Their short presentations, first on the data that was collected about children with exceptional healthcare needs and on the report’s recommendations, reflected the issues and concerns of the two parents but also those of the many families that I have spoken with throughout the first year of the project.
 
The CHiSP report can be read here.

Professor Bryony Beresford, co-author of CHiSP report

A question and answer session followed and a number of other parents shared their experiences with housing being raised as a particularly challenging issue.
 
One mother described the threat of eviction which hung over her and her son living in a private rent and the general lack of appropriately adapted homes was highlighted.
 
Dr Susan Buck, Lead Clinician for CEN, (National Managed Clinical Network for Children with Exceptional Healthcare needs) mentioned a report that might be of interest relating to housing issues and the need for accessibility, which can be read here: No-Place-Like-an-Accessible-Home

Alex Davey and son Benji

Jenny Gilruth acknowledged all the experiences that were shared and promised to make connections on behalf of individual families to address their concerns. She followed this up by talking about Laura’s family in parliament the next day.
 
You can watch Jenny raise Tom’s case as part of debating 2018’s “Year of Young People” here.

Dr Susan Buck, Clinical Lead for CEN, drew the event to close, emphasising the network’s desire to work with families and to act as a platform for raising and addressing their concerns.

A big thank you to everyone who attended and participated in this event.

You can contact our lead Claire Edwards to register your interest in any aspect of the Exceptional Families Project: email her or text/call 07713355460.

Sophie Pilgrim (Kindred Director), Jenny Gilruth MSP who hosted our event and Claire Edwards (Kindred Consultant)

Laura McCartney with son Tom, and Jenny Gilruth MSP

Dr Susan Buck, CEN Lead Clinician

Parents and professionals talking about getting it right for Exceptional Families