One of the most satisfying achievements of Prof Stephen Stick’s professional life is witnessing young cystic fibrosis sufferers grow into old middle age. It was a vastly different story when the paediatric respiratory physician and researcher began his work in the field 30 years ago. Back then the median age of survival was 12 and accompanying that sobering figure was the suffering of patients, their parents and those who cared for them.
The motivation to find better treatments, better drugs, better technology and better models of care has always been close at hand for those professionals working in the field.
Steve has played a significant role in many of these children’s lives and now he hopes to make some impression on their care as adults.
One of his passions is seeing much of the care of patients with mild to moderately severe cystic fibrosis mild-to-moderate (CF) – and hopefully most patients with chronic conditions – being delivered in the community close to where they live and work.
His submission to the Sustainable Health Review (SHR) detailed the plan but he told Medical Forum that it was not new.
“This particular issue, which we raised in the SHR, has been on the cards since 2007. It is the first recommendation of the Cystic Fibrosis Model of Care published by the Health Department of WA in 2008 and revised in 2013,” he said.
Old is new again
“While we may have been 2½ years late in getting a new children’s hospital, it was achieved from whoa to go in five years, yet we’ve been trying to change the way we deliver care to cystic fibrosis patients for more than 10 years. There seems to be money for bright, new shiny hospitals but the real investment must be in the way we do business.”
“The models of care we are using are heavily dependent on the tertiary hospital system and there is no real investment in moving patients care closer to them.”
Steve said, like most dilemmas in health, the genesis of the problem was in the divide between state and commonwealth funding.
“We really need the state to say it will invest in primary care; not necessarily to pay doctors but to facilitate doctor training, and build community capacity to treat mild to moderate chronic diseases where people live. These investments would make a huge difference to patients’ lives and would pay cost dividends to the state.”
Prof Stephen Stick
“Sadly, most decisions in health are made out of fear and not from vision. Thinking 10 or 20 years ahead is not something you can do very well when there is a three-year political cycle and continual feet shuffling.”
In his submission, Steve emphasised that there is no better time than now:
“…it can be anticipated that as care improves and new therapies become available, the absolute numbers of individuals at any age with milder disease will also increase. Even now, over 50% of young adults have relatively mild disease (defined by lung function) and most adults with CF are employed (67%) and many have undertaken tertiary education (37%).”
Currently there are 400 West Australians with CF, 4000 children and adults nationally, and one in 24 individuals are carriers of a CF gene mutation. Between 130 and 150 children with CF are diagnosed by newborn screening each year nationally.
Right to be in control
The majority of these patients are treated, regardless of severity in tertiary hospitals and Steve says in his submission, for those in the mild to moderate category, this often imposes burdens that materially affect quality of life (i.e. time lost from school/work) when some of those services could potentially be provided closer to home.
For an initial trial Steve proposed a partnership between not-for-profit community providers Apollo Health (part of St John Ambulance with multidisciplinary facilities in Joondalup, Cannington, Cockburn and Armadale), consumer organisation Cystic Fibrosis WA (CFWA) and the CAHS respiratory service.
CAHS would be responsible for case management; clinical pathways; training of staff; spirometry training and quality control. It would also treat and manage individuals with complex and severe disease.
Apollo Health would take on the routine care of patients with mild/moderate disease with onsite physiotherapy, nutrition, psychology, imaging, pathology and pharmacy services; provide walk-in urgent care; supervised care for mild pulmonary exacerbations; and liaison with community care providers.
CFWA would look to consumer engagement/communication; delivery of training packages; home care for mild/moderate exacerbations; and contribute to hospital-in-the-home services.
Leadership and evaluation would come from the deep well of academic and clinical expertise in the state.
Doing things better
“We need to make more imaginative use of highly skilled people than simply have them turn up to clinic every week and churn through the patients. In fact that was part of the problem with the morale at PMH in recent years. You had a notion of affordable FTE based on how many patients you churned through, not outcomes, which required a more imaginative and innovative approach.”
Steve has been an integral part of paediatric respiratory medicine in WA for three decades but the state has to thank Prof Lou Landau and especially Prof Peter Le Souef for drawing the Cambridge graduate to Perth.
“I did my clinical training at Thomas’s hospital, now part of Kings College in London, and then my paediatric training in Southampton where one of my bosses, Martin Radford, told me about Perth. He was a registrar at PMH when Lou Landau had arrived and was excited about the changes taking place.”
Prof Stephen Stick consulting with a patient.
“I was an avid windsurfer, so with that double incentive, I came to Perth, originally for two years then I met Peter Le Souef, who has been my chief mentor all my career. He got me interested in respiratory physiology, so I undertook my PhD at UWA. Peter is passionate about embedding research into clinical services and he really was the founder of the specialty in WA.”
“I met my wife soon after and Perth became home.”
Steve may have given up surfing the wind but he still has a passion for the water and surf-skis four to five times a week on the river and ocean. He’s also an avid snow skier though his Type 1 diabetes is making that more hazardous.
“I have some lost some strength in my legs, so last February, when I broke my leg skiing, was perhaps my passing shot, but we’ll see.”
Steve said he was diagnosed with Type 1 diabetes at the age of 27.
“That’s a little late for juvenile onset but that’s what it was. The doctor’s lifestyle made it hard to manage for many years. I reluctantly started using a pump 18 months ago and it’s been revolutionary. I don’t think the technology was quite there for me five years ago but I am an absolute convert. With the continuous glucose monitoring and feedback pump, it’s made it so much easier to manage.”
Steve stepped down as head of respiratory at PMH in July 2016 after 18 years.
“I’ve now moved to half time clinical and caring for patients with CF is a big chunk of what I do. This has been made possible by the generous philanthropy of Northern Star Resources and has freed time for me to focus on establishing a new centre for respiratory research at Telethon Kids Institute. The centre will bring together all the groups in WA that have built up great reputations over the past 30 years.”
“We punch well above our weight in paediatric respiratory research and by bringing us together under one banner, we can be more recognisable and make our research efforts more efficient.”
There’s still much work for him to do. He’s passionate to see care for CF broaden into the community and he’s excited about his work on the epithelium, which he and his colleagues are confident is nearing the point of a clinical trial.
“This would be the first use of a tissue regeneration model to treat a chronic lung disease,” he said. “I would dearly love to see that come off.”