CEN hosted this consultation event on the 28th August at the Forth Valley Resource Centre in Falkirk.
Parents met with a range of professionals and representatives of the Scottish Government Children’s Rights & Participation Team to discuss the content of the draft resource document.

Participants were invited to select four areas to look at more closely and discuss in small groups and chose the following:
1. Health & Social Care (with Self Directed Support)
2. Financial Support (also including Self Directed Support)
3. Mental health and Wellbeing
4. Support for the Whole Family

Claire from the project facilitated the discussion on Health & Social Care and the three other topics were facilitated by Jayne Scotland (CEN Co-ordinator), Anne Wilson (Children’s Health Scotland) and Beth Frank (Complex Needs Nurse Co-ordinator, Ayrshire & Arran). All three are also members of the Exceptional Families Project steering group.

CEN is currently collating all the feedback and will be producing a report which will be fed into the consultation process.

Claire’s groups all had lively discussions, shared their thoughts and raised a number of issues, including these:

The resource as a concept is a good one. A central place to go to for information, however, it can’t be the only source of information

It is good that the information is available electronically and as hard copy but nothing really beats a person talking through with you what is relevant to your situation and bringing to your attention things you don’t know about

The ‘easy read’ version needed a bit more information in it and in the main resource there needs to be links to ‘easy read’ versions of the various documents referred to in it

A chief concern for every parent in the discussions was that the ‘reality’ of the ‘battles’ and ‘challenges’ faced by families:

are not reflected in this resource. For it to be useful and credible it needs to recognise differences between local authorities, health boards etc and be honest about what is involved and where you can go when you encounter hurdles and poor practice

Overall, the event was felt to be a useful experience and a good opportunity to think about the issues and contribute to the consultation which ended on the 5th September. The government intends to launch the final resource as an accessible website, app and as hard copy versions in early 2019.

The ExFP aims to have the voices of parents of children with Exceptional Healthcare Needs heard


Anything to add? Please respond by emailing Claire Edwards or if you want to have a conversation instead text: 07713355460 and Claire will get back to you.