Alone and afraid, carers of adults with complex disabilities say they don’t know where to turn to get crucial medical help for their loved ones.
Now, a group of health professionals in Western Sydney have decided to take matters into their own hands.
As Tina Arena’s Sorrento Moon hums in the background, Peter McNamara relaxes.
His mother Coralie also takes a rare moment to rest.
As she flicks through a puzzle magazine, she glances up at a framed picture on her bookshelf.
Her husband’s smiling face looks back at her.
He died 15 years ago — leaving her solely in charge of her son's care.
"The reality hit me. You know, this is it — you've got to do this on your own. I didn't even have a lift, or a ceiling hoist.
"It is lonely, and it is hard."
Peter, 34, has cerebral palsy, is non-verbal and needs around-the-clock support.
His cries of distress often punctuate the quiet of their suburban Western Sydney home.
"Those nights when he's been screaming, and you don't know what's wrong … you can't get the help you need. It's really hard," Coralie said.
"You know, you feel like crying yourself, and I do, I've had cries, because you think 'what can I do to fix it?'"
But help — and hope — are now at hand.
Coralie and Peter are arriving at Westmead Hospital, to meet a team of volunteer doctors and health practitioners at a clinic that runs every few months.
The philanthropic doctors
On the other side of Sydney, in the outer northern suburbs, one of those volunteer doctors is up well before the sun.
As an anaesthetist, Pete Smith puts people to sleep for a living.
But he doesn't get much himself.
As the rest of his household remains in bed, Dr Smith is travelling to Westmead Hospital, where he uses his own time to run a clinic for adults with complex disabilities.
Dr Smith set up the "one-stop-shop" clinic in 2020 alongside rehabilitation physician Rummana Afreen, after noticing people with complex disabilities were turning up in emergency departments with otherwise preventable conditions.
"Several of my colleagues really noticed there was a bit of a gap in the health system in terms of heavily disabled people being able to access reasonable healthcare," he said.
"We thought, if not us, who? If not now, when? So, we went along with that idea and said, 'well, why don't we just do it?'"
Today is Peter McNamara's first day at that clinic, which works like a medical production line.
A patient is brought in for one procedure, but receives the benefit of multiple checks from various experts at the same time.
The clinic is also unusual as it utilises what is known as opportunistic sedation.
"It's hard enough amongst neurotypical people to submit yourself to a blood test," Dr Smith said.
"By providing sedation and by conducting a whole host of investigations and treatments simultaneously, we remove that part of the equation, we make the examination and the treatment easier.
"We make the investigations painless."
Sedation allows patients like Peter to tolerate botox injected deep into his muscles, to help relieve muscle stiffness.
While he is under, several other health professionals examine him.
His teeth get checked for the first time in years, because he is usually too distressed to allow dentists to properly examine him.
Then his range of movement is tested, blood is taken, his kidneys are scanned, and his urine and bowel are carefully looked at.
A social worker also checks in with his mum to see if she needs extra support.
"One-stop-shop not only means that the quality of life of our patients is improved — which is fundamentally what it's all about, right?," Dr Smith said.
"But from another point of view, it reduces the rate of hospital admission, reduces length of stay, and hopefully some of the burden in the health system."
The clinic
While Peter has only just found the clinic, 24-year-old Zahra has been a regular for about two years.
After leaving the children's system and before being treated here, she was referred to at least four similar clinics, but none had capacity to take her on.
She has cerebral palsy and needs constant support.
For her father Fadel, night-time is the hardest part of the day.
"The first two hours, she sleeps because she’s tired. She doesn’t feel pain," he said.
"After two hours, she starts to wake up, every 10 minutes, every 15 minutes and she screams."
Without the benefit of an entire team of doctors and an anaesthetist, Zahra was previously treated with only an oral sedative.
Several people needed to hold her still.
Rehabilitation physician Rummana Afreen said the experience is much more positive now.
"When we started sedation and injecting Zahra — for the first time she slept well and she was positioned well on the chair," Dr Afreen said.
"We can really see the difference — the family is happy and Zahra is happy."
Originally from Iraq, the clinic has also helped Zahra's family navigate the complexities of the health system — giving them, and Zahra, some reprieve.
"I sleep more, and I become at ease and more relaxed because my daughter is comfortable, she’s asleep and not in pain. And also because I can get my fill of sleep," Fadel said.
The clinic is largely fuelled by goodwill, but there is also an element of bartering.
As well as running the clinic in their downtime, the doctors also try to get other health professionals on board through trades: offering to help them with their patients if they do a stint in the clinic in return.
But it cannot run solely on case swaps and generosity, and they are hoping for long-term backing.
"We will keep doing what we can in the meantime, but we know that there are so many other people who would benefit from this sort of service and at the moment we're not able to reach those people," Dr Smith said.
The bigger picture
Royal Australasian College of Physicians president Jacqueline Small said clinics that used opportunistic sedation were rare, running on an "ad-hoc" basis.
"There's growing interest around Australia in providing that model of care, developing some guidelines for patients and other services. But it's absolutely imperative that we can provide those services for people with complex needs," she said.
But while clinics that use sedation are hard to find, even teams-based support without an anaesthetist can be difficult to access.
So-called "multidisciplinary teams" — where a patient is treated by multiple medical professionals in one setting — exist more broadly in the children's health system.
But Dr Small said patients often struggle to find places to take them on once they turn 18.
"We know that this is a real problem. I've seen some really innovative examples of multidisciplinary teams and collaboration across the health system, but they're few and far between," Dr Small said.
"They really are based on the goodwill of the people involved in those services, who want to do the best for the people that they see.
"I think one of the first things that has been a barrier to establishing these clinics is the invisibility of the needs of people with complex disability, including people with intellectual disability.
"The invisibility of their needs has been one problem. The models of care that are needed are expensive models of care and often we see few patients, because their needs are so complex, and the health system hasn't grappled with that very well."
Brisbane-based Elly Demarchelier knows all too well the challenges of transitioning out of the children's system.
"When you're a child, and you're in the children's health system, you are completely wrapped in support. I had a physio, paediatrician, an orthopaedic surgeon, an OT, a speech pathologist — everyone was working together for my best care," she said.
"And then I turned 18 and it was literally like falling off a cliff into nothing."
The 30-year-old has cerebral palsy and spent much of her early 20s in hospital, dealing with severe seizures that needed specialty treatment.
"It wasn't until maybe my third or fourth ICU submission admission that I was actually able to get a consistent doctor to look after this and actually look into it. It was an incredibly scary and anxious time and to not be able to have that consistent support," she said.
"I am so privileged in this area, so if I am struggling to pull together a medical team, I can't imagine what it is like for someone with an intellectual disability or psychosocial disability, someone who's non-verbal, for example.
"My experience is that the system just leaves you to fall through the cracks."
In a statement, federal Health Minister Mark Butler acknowledged there were barriers to equitable healthcare for people with complex disabilities, saying a national strategy aimed at improving that was underway.
While each of the states and territories pointed to numerous initiatives across the country set up to deliver high-quality health care to people with complex disabilities.
But for Coralie McNamara, the Westmead one-stop shop clinic is the only place that has provided her with something she has long pursued: immediate answers.
The team discovers Peter's bowel is severely impacted, there is a likely infection in his urine and his muscles are abnormally and painfully tense.
"I'm feeling relieved because I know if I had to do all this on separate occasions it would be under anaesthetic here and there and everywhere else and that's more dangerous, so this is really good, and it gives me assurance," Coralie said.
After shouldering the bulk of her son's care for decades, she is also grateful to have an entire team of health professionals who will continue to see Peter every few months.
But she knows there are others who are not as lucky.
"There is a big gap that needs to be filled," she said.
"Where do you go? And who do you talk to? It's hard to get into these places, for special needs, to be seen, takes over a year to go to the one that I previously went to. And, anything can happen in a year."
Credits
Reporter: Stephanie Dalzell
Photography & videography: Michael Nudl, Stephanie Dalzell
Producer: Emily Jane Smith
Digital producer: Georgia Hitch
