A report on an Exceptional Families information event in Aberdeen, by Claire Edwards, Kindred Consultant.
 

 
 

The Exceptional Families project was very pleased to be invited by Tracy Johnstone, chair and Dr Sorcha Hume, General Manager of Charlie House in Aberdeen to host a local information event for parents.

Eight families had expressed an interest in joining us, but as is the nature for many families with children with exceptional healthcare needs, on the day itself only three could attend. It was great to have Kerry, Rebecca and Maureen with us. I shared the themes and issues that families have raised with the project and they commented that the list reflected their own concerns, past, present and potentially the future. In addition, they identified the transition from hospital to home as particularly significant for families – both in terms of practical aspects including delayed discharge because of equipment needs, transport, lack of planning by health staff and emotional shift required to return home etc

Jayne Scotland (CEN), Dr Sorcha Hume (Manager Charlie House), Claire Edwards (Kindred Consultant) and Sophie Pilgrim (Kindred Director)

The parents talked about the weight of responsibility that they felt when making decisions about their children’s health, their doubts and anxieties – ‘What if I get this wrong? What are the longer term consequences?’

The refreshed CEN website was displayed with its new features – photographs, the Families Zone and clearer links to materials and the feedback within the room was positive with everyone encouraged to visit the website at home and come back to us with any further comments and suggestions.

Liv Cockburn from iConnect, described the setting up of the independent service in 2014 in response to the Self-Directed Support (Scotland) Act, 2013, coming into law.

She stated that a key aim is to change the culture and practice of the professionals in Health and Social Care.

iConnect support disabled people and families by
• providing information
• showing how it can support ‘living an ordinary life’
• developing connections within community
• in planning and achieving ‘meaningful choice and control’
• accessing care and support that meets their needs
• become employers and provide structures to support that role

The model is one of
• Linking people together
• Connecting with communities
• Holistic
• Setting up groups to create connections, reduce isolation and increase confidence

They receive 400 new client referrals each month in addition to on- going work. Liv was upfront about the challenges facing families – goal posts moving, lack of transparency, misinformation, getting an assessment and the sense of ‘a post code lottery’. She emphasized that her service could provide information, support including advocacy and most critically an accurate picture of the local situation and processes. iConnect uses a Health and Wellbeing framework to support families to think more creatively and to be clearer as to what wellbeing looks like for them as there is no ‘one size fits all’.

One of the parents, Rebecca, shared a positive experience of SDS being used to help with a nursery placement and support – an example of how it can work if people are open and flexible.

It was great to have partner organizations represented and Salena Begley (Partnership Manager, Family Fund), Deborah Brown (Children’s Health Scotland, Tayside) and Catriona Jamieson (Digital Passports Development, PAMIS) added to the liveliness of the discussions.

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.