Parents have to take own fridge to hospital
WHEN your child has a terminal illness the last thing you want to worry about is carting a fridge to hospital.
Parents of Gladstone's youngest cystic fibrosis sufferers face taking their own fridges, longer waiting lists, educating agency nurses and battling for limited parking when they trek to Brisbane for treatment.
Without a lung transplant, many CF sufferers will die before they turn 40.
Along with intensive physiotherapy and medications, people with CF need to eat plenty of high-fat, salt-laden food to stay healthy.
Queensland's only ward for children and adolescent CF patients, at Lady Cilento Children's Hospital in Brisbane, is having serious teething problems.
CF patients spend at least two weeks a year in the ward, but most visits can be much longer and more frequent.
CF Queensland chief Cath Parker said families were taking fridges to the hospital to keep food fresh.
"Parents are borrowing fridges from others for their hospital stay and we have been told that there are fewer facilities for parents to prepare the additional foods needed for their children in close proximity to the ward," she said.
"Feedback from parents has highlighted the fact that whilst the new CF ward is modern, there is always a high demand for beds that sometimes means kids in critical conditions may have to wait to be admitted," she added.
Ms Parker said a lack of specialised staff meant parents had to teach agency nurses how to care for their child.
Children's Health Queensland chief Fionnagh Dougan said a larger fridge/freezer was installed this week.
- APN NEWSDESK
What is cystic fibrosis?
- Most common life-threatening genetic condition in Australia.
- Problem with protein that controls movement of salt in and out of cells.
- Thick mucus clogs lungs, trapping bacteria.
- Infections and blockages cause irreversible lung damage.
- Mucus can also cause problems in the pancreas.
- Both parents must carry the CF gene for a baby to be born with the disease.
- More than one million Australians carry the CF gene.
- All Australian babies are screened using blood and sweat tests.
- No cure. Treatment simply slows progress.
Source: Cystic Fibrosis Queensland