Palliative care, talking about dying and intellectual disability were the topics of discussion in a Palliative Care NSW Forum held yesterday in Surry Hills.

During the forum attendees watched Dying to Talk: Helping people with intellectual disability to understand dying and death, a DVD resource produced for the University of Sydney Centre for Disability Research and Policy and then Sunshine (now Unisson Disability) and discussed the implications for support workers, clinicians and people with intellectual disabilities.

Facilitator and Palliative Care CNC Joan Ryan talked about her experience of supporting a man with intellectual disabilities as a palliative care nurse. As his support workers in the group home were distressed about the possible impact on the other residents they were reluctant to visit ‘Bill’ in hospital. Eventually one day the palliative care team called a family conference and his co-residents were invited to be involved.

Joan noticed that Bill’s housemates showed an affection for him beyond what was being acknowledged in the meeting. Bill later said ‘I love all those people, they’re my friends’.

“He understood a lot more about his dying than was really acknowledged by staff. He died content with his world, which is something you rarely see.”

The DVD was developed specifically for support workers of people with intellectual disabilities. Unisson now has the DVD available for distribution. You can request a free copy of the DVD to be sent to you (within Australia) by contacting Unisson Disability on 1300 266 222 or emailing at Alternatively you can view all 9 chapters plus the special by following this link.

International Day of People with a Disability is on Sunday the 3rd of December 2017.

Pic: Joan Ryan at the Forum