Page 2700 - Week 07 - Wednesday, 6 June 2012
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I would like to spend a little time reflecting on the ACT health system as a consumer of the ACT health system. I have had 30 years experience of the ACT health system as a mother of two children with cystic fibrosis. I have had an association with the Cystic Fibrosis Association. It has not been as close as I would have liked it to have been in the last few years, but I still keep in contact with them and the great work that they do. The constant theme from the Cystic Fibrosis Association is how services at the hospital have declined in the last few years for cystic fibrosis patients.
I have spent a lot of time in the last little while talking to people about the lack of integration of services for cystic fibrosis patients. There may not be a vast number of cystic fibrosis patients in the ACT but it is the most common chronic inherited disease in the country. While there are not as many patients as there are for diabetes, there are similarities in some of the treatments. The services provided to cystic fibrosis patients and the complaints that I receive from parents and doctors about the services provided need to be addressed.
To the credit of the new head of the women’s and children’s hospital, last year I made an extensive complaint, after careful consideration, about my son’s most recent admission to hospital. I thought for about two months that I would not make the complaint that I eventually did make. But I am glad I did because I have had some very fruitful discussions with the hospital and the doctors at the hospital.
It was most disarming, actually. At the first of a series of meetings I have had with the hospital over cystic fibrosis services in the ACT, one of the senior officials of the hospital said, “Mrs Dunne, I have read your letter of complaint.” To her credit, this person had not been at the hospital when the incidents I complained about had actually occurred. She arrived just after my son’s last admission to hospital. She said, “It brought me to tears to think that people experience this sort of difficulty.” She sat down and said honestly, “The services we provide to cystic fibrosis patients are appalling.”
That has been borne out by the complaints of a number of parents of children with cystic fibrosis and adults with the disease. It is borne out by the fact that over the past few years there has been a steady exodus of cystic fibrosis patients away from the Canberra Hospital to Sydney hospitals to receive treatment that they should be receiving here. Not just as a result of my complaint but as a result of the work that has been done by the Cystic Fibrosis Association, there are the beginnings of a turnaround. I am hopeful that we will see better services for those people when it comes about.
But it should not take the sort of complaining and the sort of table thumping that I have seen from the Cystic Fibrosis Association to get these changes. I have had a real eye-opener. One of the things that has really concerned me over the years is that there is a level of service to paediatric patients with cystic fibrosis, but when someone ceases to be a paediatric patient in the ACT, nothing happens.
My elder child has cystic fibrosis. She remained a paediatric patient until she was 19 because there were no other services for her. She recently moved to Sydney and now
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