AS a child living with cystic fibrosis, Morgan Gollan was told she probably would not live past the age of 18.
It had made it difficult to make plans for the future, and the added stress of watching most of her childhood friends die from the recessive genetic condition had made her passionate about advocating for better mental health support for people with cystic fibrosis.
Now 27, Ms Gollan has been campaigning for a psychologist and full-time social worker to be appointed to the adult clinic at John Hunter Hospital to meet Cystic Fibrosis Standards of Care in Australia.
She has more than 2500 supporting signatures on a petition directed at Federal Health Minister Greg Hunt.
“‘Normal’ 27-year-olds don’t usually have one of their friends dying every six months,” she said. “Most people don’t usually face these issues until they are much older. That has a massive psychological impact.
“And now we are getting older, and living longer, we also have all this anxiety about knowing what to do with our lives.”
Ms Gollan said for every 75-to-150 patients, a specialist CF centre should have one full time social worker, and one full time psychologist, in order to meet the Australian standards of care.
The CF Service at John Hunter Hospital currently provides services to 120 patients from across the district.
Last year, 409 attendances were recorded. But Ms Gollan said the clinic had only received enough funding for a part-time social worker.
She had sought help from a psychologist when her best “CF friend” – who had also suffered mental health problems – died nine weeks ago.
“The experience highlighted the value and importance of these health professionals in CF care,” she said. “They should be an essential team member that every patient can access – not just at crisis point. We should be proactive about mental and psychosocial health, not reactive. At the clinic, they do depression screening. But because we don’t have the mental health support, it doesn’t really get followed up.”
Michael DiRienzo, Hunter New England Health chief, said people with a chronic disease, such as CF, often experienced significant psychological stress.
“Both the adult and child clinic teams include dedicated part-time cystic fibrosis community care social workers,” he said. “Adult CF patients admitted to John Hunter Hospital receive support from the hospital’s social work team and the district’s Mental Health Service.
“Likewise, the John Hunter Children’s Hospital general social work and psychology teams support the children’s CF service. Patients also receive support via their GP in a shared care arrangement, or are referred by their GP to a community psychologist.”
Mr DiRienzo said the John Hunter Children’s Hospital CF Service provided speciality care to 100 children and young people across the district.
“Children with cystic fibrosis are often diagnosed when they’re newborns and build a strong relationship with their treating medical team. In the past 12 months there have been 92 inpatient admissions for CF patients to the Children’s Hospital, with 10-14 patients each week attending multidisciplinary clinics.
“In addition to inpatient admissions and outpatient clinics, the District also offers telehealth and outreach services to areas such as Tamworth, Armidale and Taree.”