I’m putting together a Christmas wish list of things needed for families supporting children who live with chronic pain.
At the top of my list is a dedicated pain unit at Princess Margaret Hospital led by a medical specialist in children and pain.
At the Pain Summit in 2010 a study was presented revealing that 46% of children with terminal cancer receive inadequate pain relief in the last month of life.
Just pause for a moment and think about the unnecessary suffering involved here – both for children dying in pain and for their families standing by them.
High quality pain management is not being delivered even in this extreme circumstance.
For over a decade I have been able to observe the gaps in services for children living with chronic pain in our own hospital here in Perth.
As the parent of a child in pain I have spent a lot of time looking for help and support and just not finding it.
In the end our medical support system consisted of our wonderful Rheumatologist and our local chemist.
As we struggled through times of great difficulty the kindness and expertise of these two overworked men were all we had.
There is an absence of training and support for parents who find themselves managing this distressing and complex situation.
In talking to other parents of children living with pain I keep hearing that they feel alone and they don’t know who to turn to.
We need our own integrated system where families have access to high quality information and support both inside the hospital system and back out in their own homes.
In February next year I am going to speak with the Board of the Health Consumers” Council of WA about the gaps in support for children in chronic pain.
If you have a request please send me a comment or use the contact page on this website.
It really is time to address what is an obvious gap in our health system – I’m going to give it my best shot. I know there are many others working really hard to do the same.
Please join us and help make this years Christmas wish for integrated information and pain support services a 2012 reality.