In and out of hospital with your fridge: life with CF
WHEN your child has a terminal illness the last thing you want to worry about is carting a fridge to hospital.
This is the reality for the parents of Gympie's youngest cystic fibrosis patients.
Taking their own fridges, longer waiting lists, educating nurses from nursing agencies and battling for limited parking spaces are just some of the problems facing the parents when they trek to Brisbane for treatment.
Without a lung transplant, many CF patients 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 is having teething problems as it transitions into a new facility.
The ward, home to the state's specialist CF health team, is at Lady Cilento Children's Hospital in Brisbane.
CF patients spend at least two weeks a year in the ward, but in most cases these visits can be much longer and patients often require multiple admissions every 12 months.
Mater and Royal Children's hospitals merged with Lady Cilento late last year.
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.
Ms Parker said some families were concerned about admission waiting times.
"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 said.
Ms Parker said a lack of specialised staff meant parents also were burdened with teaching agency nurses how to care for their child.
"More specialised nursing staff would also reduce reliance on agency and general staff, who may not appreciate the intricacies of CF, and not force parents to take on the prime responsibility of ensuring that non-CF nurses have accurate and appropriate knowledge to care for their child," she said.
Gympie region mum and artist Liz Sawrey lost her brother, William Weller, to cystic fibrosis when he was just 18 years old.
Her childhood memories include spending many weekends with grandparents or in Brisbane visiting and taking William out for activities "to break the boredom".
"(There were) long periods of time when he wasn't home," Liz said.
"When he was a child, the Royal Brisbane Children's had a dedicated ward for CF and all the nurses were very good.
"As most kids with CF are not really sick when they are getting a 'tune-up', the ward was a very happy place.
"When William got older it was a very different story as he had to go into the adult ward and would often be surrounded by old men.
"It was terrible. I remember mum buying Mars Bars by the box. And he used to take hundreds of capsules a day, which I believe is much improved these days.
"I understand there is also a new drug out there which can help a percentage of sufferers immensely by virtually negating the disease - it's called Kalydeco and currently needs government subsidy because it is very expensive."
Sunshine Coast mum Toni Colburn's 10-year-old daughter Georgina recently spent time battling five lung infections at Lady Cilento.
She said having a child in hospital was stressful enough without the added burden of a long waiting list and minimal refrigeration and parking spaces.
"It's very hard seeing your daughter go through this illness," she said.
"The problems at the hospital need to be ironed out as soon as possible so parents can fully concentrate on their child's recovery."
Children's Health Queensland chief Fionnagh Dougan said her organisation was rectifying the fridge situation.
"We are pleased to report that a larger fridge/freezer has been installed on the ward this week for families," she said.
"This, together with the original 440-litre fridge on the ward should be more than adequate."
She said there was sufficient parking but conceded there could be troubles during peak times and said nurses were educated about the disease.
WHAT IS CYSTIC FIBROSIS?
- It is the most common life-threatening genetic condition in Australia.
- The major condition is a problem with the protein that controls the movement of salt in and out of the cells.
- Too much salt causes mucus to become thick and sticky and to build up in the lungs, clogging the air passages in the lungs and trapping bacteria.
- Repeated infections and blockages cause irreversible lung damage and may lead to death.
- 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.
- As there are more than 900 mutations of the gene, genetic testing of parents can be complex.
- All Australian babies are screened at birth for CF using blood and sweat tests.
- As yet there is no cure and treatment simply slows progression of the condition.
* Source: Cystic Fibrosis Queensland.
Gympie urged to dig deep to support CF Qld
GYMPIE'S cystic fibrosis patients are living with a death sentence - and they need you.
Their main advocacy group is calling on the State Government and our community to dig deep.
As CF Queensland's major annual fundraiser bounces into its third week, the organisation's chief has called on the Palaszczuk Government to re-instate funding cut by the previous state government.
Cath Parker said a $90,000 commitment from the government would pay for a specialist to visit patients in Gympie and other regional centres across the state.
There are 850 cystic fibrosis patients in Queensland.
"We have a two-pronged issue with funding," Ms Parker said.
"We need to ensure our hospitals and allied health providers are resourced in a way that is adequate to manage the complexities of CF, therefore keeping our community out of hospitals for longer and having a more active, fulfilling life.
"Also, under the Newman Government, it was determined that CFQ's government funding for providing services to the community will end in December, 2015.
"CFQ received about 8% from the Queensland Government, however removing this funding, coupled with an increasing population with new needs, means that our CF community is significantly compromised.
"Cutting off the already minimal funding it has is short-sighted at best and deplorable at worst."
Ms Parker said an outreach dietitian would make a huge difference for patients coping with meeting their dietary requirements that can include high-fat and high-salt foods.
"Recently, funding has been cut for the specialist CF dietitian to accompany outreach teams to regional areas," she said.
"Due to the specialist nature of the Brisbane CF facilities, regional patients need to travel to Brisbane to receive their required tune-ups, which is inconvenient and costly, as travel subsidies do not cover the high costs for families and carers."
Queensland Health Minister Cameron Dick said there would be a review of the program CFQ had applied for funding under.
"I have flagged a review of the funding program that supports non-government community health providers," he said.
"We will carefully consider the outcomes of the review."
Meanwhile, the Big Bounce, held during March, encourages residents, schools and community groups to hold Big Bounce parties or trampoline-based exercise challenges to raise funds and awareness of the disease.
CF Australia's state branches hope to raise $65,000 from the fundraiser.
Cystic Fibrosis Queensland provides practical and emotional support for patients including respiratory equipment, physiotherapy, accommodation, counselling, parent respite programs, physical activity support, webinars, and special support for children during hospital stays and education. To join the Big Bounce, go to http://www.cysticfibrosis.org.au.