Melbourne Cup Luncheon helps get remote care to Lyndsay
Lindsay lives in rural WA. She’s 40, and has cystic fibrosis. For the past 12 months, Lindsay has been taking part in a clinical trial funded by the Melbourne Cup Luncheon to determine the feasibility of telehealth clinics for adults with CF in rural and remote WA.
What is cystic fibrosis?
In people with CF, salt can’t move in and out of the cells properly, and this causes thick mucus to build up in the lungs and other organs – which can then trap bacteria and cause irreversible lung damage. For people like Lindsay, a health routine includes up to 25 tablets a day and physiotherapy. Even still, a common cold can quickly become pneumonia and regular visits to a specialist CF clinic can keep the condition under control.
What was the problem?
Lindsay was living in Karratha, around 1,500km from Perth and the nearest cystic fibrosis centre. Being so far away meant it was quite difficult for Lindsay to meet appointments. Not only was the cost and time of a flight to Perth prohibitive, but then there was the accommodation and care hire to book while she was in Perth. There was also the risk of getting on a flight and being exposed to germs – a real risk for people with CF when they travel.
“I booked my appointments less and less,” says Lindsay, “so I was getting behind in learning what my lung function was. My health was being affected. When it got to the stage when I was breathless, I would go to Perth. But if I’d been able to monitor that my lung function was declining I would have acted earlier. You can feel it in yourself – but usually by then it’s too late.”
What did we do about it?
But then physiotherapist Jamie Wood approached Lindsay to take part the study, lead by Associate Professor Sue Jenkins. Sue was the recipient of the Institute for Respiratory Health’s Glenn Brown Memorial Grant for Cystic Fibrosis and Bronchiectasis Research. This grant is entirely funded by donations raised by the Melbourne Cup Luncheon Committee, a group of volunteers who run the fundraising event each year. Sue and Jamie have just submitted their progress report for the past 12 months of research.
“Jamie set everything up for me,” says Lindsay. “I would go to the local hospital and have my lung function tested in the physio department. Then I would have an appointment with Jamie and Sue (Morey) on Skype, and whatever doctor was on hand that day. Also sometimes a dietician too. It was like going to an appointment in Perth, everyone was there to have a chat.
“When I moved from Karratha to Geraldton, Jamie and Sue Morey just went out of their way to make things smooth for me. I truly appreciate the telehealth program and hope it is here to stay for the health and wellbeing of myself and others”.
How can you help?
Buy a ‘brick’ in the Glenn Brown Wall of Hope to support the grant for 2015.
At any time, nearly 30 adults with cystic fibrosis live further than 100km from the CF centre at Sir Charles Gairdner Hospital. This makes it difficult to attend CF clinics and to receive the same care that those in the metropolitan area are provided. Furthermore, driving or flying long distances for CF clinics is very disruptive to the lives of people with CF, on top of already burdensome daily treatment regimens.
Over the past year, the Institute for Respiratory Health’s Associate Professor Sue Jenkins and CF physiotherapist Jamie Wood have been researching the feasibility and impact of telehealth clinics for adults with CF living in rural and remote Western Australia.
This study investigated the addition of telehealth clinics, via high definition videoconferencing facilities, to routine CF care. This enabled the SCGH team to review the adults with CF at their local hospital, only minutes from home.
Their research could mean that people living with CF in rural and remote Western Australia could have more regular access to the care they need, thanks to modern communications technology.
With this research is nearing completion, interim results show that adults with CF living in rural and remote WA now meet the Australian CF Standards of Care recommendation that they attend four or more CF clinic visits per year, ensuring they are now being given the best chance to receive optimal treatment and improve long term health outcomes.
The Next Step
Telehealth clinics will now become part of routine management for adults living in rural and remote WA. The willingness of the participants to adopt modern technology as part of their care has opened the doors for further integration of technologies into other aspects of CF care, which is exciting for all adults who attend the SCGH CF centre.