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  • The cruellest birthday gift

    2019 - 04.16

    Desperate: Blaxland’s Rebekah Davison faces a two-hour trip for vital cystic fybrosis treatment because of a capacity shortfall. Picture: Shane DesiatnikMOST people about to turn 18 are focused on drinking and voting.

    But for Blaxland resident Rebekah Davison, her 18th birthday means facing a terrifying uncertainty about her disease.

    Rebekah has cystic fibrosis and from February 20, the adult clinic in Westmead will close its doors to new patients due to overcapacity.

    In October, when Rebekah turns 18, she may no longer be eligible for treatment at The Children’s Hospital at Westmead or its sister adult clinic and will be forced to travel over two hours to the nearest clinic at Camperdown.

    “All my life my medical needs have been met,” Rebekah said.

    “I’m genuinely frightened by the idea that I might not have the day-to-day care from an adult clinic.”

    Cystic fibrosis is a chronic disease which suffocates the lungs and causes major respiratory problems and other debilitating problems.

    It means Rebekah needs a bimonthly check up at one of the three CF clinics — Westmead, Camperdown and Newcastle.

    “If there’s not enough money to keep funding Westmead, I will have to go Camperdown,” she said.

    “That means another two hours of travelling to get the clinical services I need.”

    Despite a 50 per cent increase in Westmead patients for Westmead, the clinics have had no new staff in seven years.

    Westmead clinic director, Associate Professor Peter Middleton, said accepting new patients could compromise standards of care.

    In a letter to the children’s hospital, he said current staffing levels were “unsustainable, even in the short term”.

    The NSW Greens have called for an extra $2 million in funding, with $700,000 going to Westmead.

    “We think that this is a fair ask,” Greens candidate for Parramatta, Phil Bradley, said.

    “It’s not a lot of money in the state’s $18.6 billion health budget.”

    But chief executive of Cystic Fibrosis NSW, Michele Adair, said even if the NSW government spent an extra $2 million, the problem of undercapacity would still exist.

    “Although there is no cure, advances in treatment mean people are living longer,” she said.

    “The average life expectancy is 37, and many young people die in their 20s. [But] for the first time ever there are now more adults with CF than children.

    “The government has failed to recognise the clinical capacity as life expectancy improves.”

    According to the National Standards of Care, the clinics should employ 68 staff.

    Together they employ less than 10, Ms Adair said.

    “We’re not being unreasonable or ridiculous,” she said.

    “Given the nature of Rebekah’s condition, the extra travel time places an additional risk to her health. The Minister for Health, Julian Skinner, has the authority and the responsibility to fix this.”

    NSW Minister for Health’s office declined to comment, instead referring Fairfax Media to NSW Health.

    A NSW Health spokesperson said immediate issues at the Westmead clinic have been addressed to ensure “this important group” of patients is provided with the best clinical care possible.

    “The service is operational and has accepted 10 new patients in the last three months,” they said.

    “There have been no changes to patient services.

    The spokesperson said the department provided grant funding to Cystic Fibrosis NSW in 2014/15 of $245,300 for family social work and support services.

    “The Agency for Clinical Innovation (ACI) has also been working with NSW clinicians, service managers as well as patients and their families to develop a Cystic Fibrosis Model of Care, which will be distributed for clinician and consumer consultation later this year,” he said.

    “We will continue to work closely with Cystic Fibrosis NSW to ensure that the health care needs of adults with CF in NSW can be met now and into the future.”

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