The news this week that South Australian Senator Bob Day was pushing for the establishment of a national shunt registry is heartening for those families living with the effects of hydrocephalus.
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The Family First MP has stepped up after his staffer, Rikki Lambert, lost a toddler to hydrecephalus and its complications.
Mr Lambert alerted the MP to the campaign for a national registry and his intervention is welcomed by Moruya’s Coppin family.
It will also be welcomed by Narooma’s Melissa Cork, now an adult, who knows too well the effects of this cruel condition.
The recurrent funding sought for the running of the registry is chicken feed in budgetary terms – at last count a mere $200,000 was needed per annum.
Yet, it seems too hard to find.
Mr Lambert’s plight has touched a chord with Senator Day.
Once you have had a personal connection with a child or family living with this condition, it is very tough to look them in the eye and say, “sorry, there is nothing I can do to help”.
Yet families live with political rejection day in, day out – successive Australian Health Ministers have failed to step up and fund this simple request.
As the Coppins and Mr Lambert have pointed out many times, shunts are the most likely of all surgical implants to fail.
Researchers are itching to make a difference.
The surgeons who deal with the effects of this disease and of the effects of failing shunts are itching to do a better job.
A national registry of what procedures are performed and when; how well they work and for how long; is the very first step to improving shunt implantation in Australia.
Families live with the fear a shunt may fail at any time, with the resultant risks associated with surgery and infection.
Children and adults with hydrocephalus just want to lead normal lives –but it all seems too hard.
Eurobodalla MPs have made representations to ministers – to no avail.
The time for polite representations may now be at an end.
These families do not need another politely worded rebuff.
We hope Senator Day’s recent letter to Rural Health Minister Fiona Nash secures more than a motherhood statement.