Cerebral Palsy Consultation Forums

Who attended the consultation forums?

Contact was made with relevant networks such as the Centre for Cerebral Palsy to advertise the consultation forum to all the families they had worked with. Family members, carers, health professionals and people who had an interest in the mandatory notification legislation attended.

A number of people in the Broome area wanted to watch a video of the community conversation because travel to Perth was difficult. It was decided the interactive nature of forum meant there would be little benefit in joining via video.

It was decided to run a forum in Broome so that those with an interest had an opportunity to be involved. Existing links in the Broome area were used to advertise to the second consultation forum which expanded the reach of the project and built new important relationships in this location. The Broome Forum was attended by parents, carers, paediatricians, Aboriginal health workers, and staff from community organisations. 

Why did you hold a consultation forum?

To inform consumers about mandatory notification of cerebral palsy to the Cerebral Palsy Register and to find out if consumers had any concerns about this.

It was also an opportunity introduce the Cerebral Palsy Description Form to consumers and parents. Paediatricians complete the form and are required by legislation to share that information with the Cerebral Palsy Register. Once the child reaches 5 years old there is no mandatory notification and they are mainly treated by therapists. This makes it important for therapists to be able to discuss the form with parents.

Consumers and parents have little opportunity to meet the people who manage the Cerebral Palsy Register. It was hoped that the consultation forums would enable a more personal connection between those who manage the Cerebral Palsy Register and those who are registered on it.

Benefits

One benefit has been a sense of inclusion and making the Cerebral Palsy Register more approachable. Having consumers deliver presentations at the consultation forums also helped that.

Taking the time to go to Broome to hold a consultation forum helped to build relationships with people in that area, and gain access to some fantastic networks.

What worked well or didn’t work so well?

Having tables to talk around rather than a whole group discussion worked well. This coupled with allowing consumers to write down any comments they were unable to say during the discussion ensured that everyone had their say.