A recent case in the UK has caused a great deal of concern among parents of children who have serious medical conditions. Many of us observed developments concerning the Charlie Gard case with horror and despair, and wondered whether a similar fate could await a child in this state.
Charlie was a young child of ten months who suffered MDDS, which is a condition that causes weakness in the muscles and leads to brain damage. Charlie was initially hospitalised but died after a protracted and emotional legal battle between his parents and the hospital. Before Charlie’s death, it was suggested that medical practitioners in the USA allegedly have a treatment called nucleocide which is said to offer relief to patients like Charlie. An online crowdfunding page was set up to help Charlie fund the necessary therapy. The hospital however believed that the therapy only treated the symptoms. They refused the parents’ requests to transfer Charlie to the US causing the parents to go to the courts. They were not successful in their legal challenge to the hospital’s decision.
This case naturally goes to two very important issues: one being the sanctity of life, particularly of vulnerable people who cannot advocate on their own behalf; the other is the rights of parents to decide what happens to their ill children.
What struck me as particularly disturbing is that a decision was made not to give the young Charlie a potential chance at dealing with his condition where an experimental treatment was available, where funds were raised to help fund the treatment, and where the parents clearly wanted to try and save their child’s life.
Understandably, many parents in NSW would be concerned that a similar situation could arise here.
My question with notice is this:
(1) What is the position of the Government in relation to parental rights of children who suffer serious medical conditions?
(2) What options are available to patients suffering a serious medical condition to relieve their suffering, including experimental treatments?
(3) Is the Minister aware of any cases in New South Wales analogous to what has transpired in the case of Charlie Gard?
(4) What safeguards are there in the New South Wales Health system to allow parents to decide what is to happen to their children in similar situations?
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Pic Credit: BBC