The WA government is currently reviewing palliative care services in the state.
Perron Institute's Palliative Care research stream, is leading the review and starting with a survey.
The survey is really important in allowing the research team to get an understanding of how palliative care works on the ground.
I filled out the survey because at the start of this year my husband was in palliative care. The word palliative seems really scary and when your GP mentions it to you it almost feels like a death wish.
But this doesn't have to be the case for everyone who falls under palliative care.
The care that the palliative team provides can prolong life and they have a big focus on quality of life too.
For my husband he needed pain relief from what the aggressive brain tumours were doing to him. He experienced palliative care in the hospital setting and in the home.
What I appreciated the most from the palliative care community nurses was that I could call them at any time of the day with any sort of question.
They were also really good at re-assuring me about how I was caring for my husband, which was comforting.
What I was disappointed in, and I believe it is a resourcing issue was that once my husband passed away I didn't get any follow up from the team.
It felt really weird to me because they were such a big part of our lives for a couple of months and then to have nothing left me feeling a bit empty.
I also didn't know where to turn to for help as there was no guidance on bereavement groups or relevant counselling.
This is just my experience, I urge everyone who has experienced palliative care to participate in the survey. The closing date is August 16 and it can be found at perroninstitute.org/palliative-survey.