Specialist gastroenterologist Vincent Ho said Campbelltown Hospital’s gastroenterology clinic had seen a noticeable surge of patients from across the state with specialised gastrointestinal motility conditions like the more problematic gastroparesis where the stomach muscles stop working properly and has difficulty moving food from the stomach to the small intestine.
In some of the most severe debilitating cases, sufferers are fed through a tube inserted through the abdomen directly into the small intestine to bypass the stomach.
“Currently Campbelltown is the only public facility that caters for patients with specialised gastrointestinal motility conditions in Greater Western Sydney. We however receive referrals from beyond Greater Western Sydney including from all over NSW and even paediatric referrals from the Children’s Hospital at Westmead,” Dr Ho said.
Since a similar clinic at Blacktown closed two years ago, Dr Ho said the Campbelltown unit had become “extraordinarily busy” as patients with complex chronic gastrointestinal complaints travelled from well outside the region to Campbelltown to seek specialised care.
While he is yet to turn away a patient, Dr Ho warned: “I am feeling the pressure resourcing wise.”
Now the push is on to open a NSW Centre of Excellence in Gastrointestinal Motility Disorders at Campbelltown Hospital.
The concept has the backing of Campbelltown Council which recently launched its Health and Education Precinct Vision in NSW Parliament saying Campbelltown could become a world leader in community based care including gastro motility.
The centre would act as a multidisciplinary health service with all the necessary professionals under the one roof providing patient care including dieticians, physiotherapists, psychologists and nurses.
Dr Ho estimated the centre would cost $700,000 annually to run – but would save money by sparing many patients from a hospital admission.
“Some patients can spend many weeks or months in hospital. With such a model we can enable more patient services at home with a dedicated nurse monitoring their care,” he said.
Dr Ho said gastrointestinal disorders were difficult to diagnose and challenging to treat.
“Often sufferers are misdiagnosed and often their disease is chronic and requires expert knowledge,” he said.
That few doctors understand the condition is what has compelled many sufferers to travel long distances to Campbelltown which has become renowned as a major centre in NSW for the diagnosis and management of gastrointestinal motility disorders.
“What we have is a special understanding of their needs and we’re very passionate about providing them with the best care. Unfortunately, we don’t have the multidisciplinary team members to deliver that optimal care but we could with a centre of excellence in Western Sydney,” Dr Ho said.
“We know that there are 125,000 gastroparesis sufferers in Australia and about 12,000 of them in Greater Western Sydney who require dedicated care.
“I got into this field after seeing my first patient with gastroparesis who after having all the tests and treatments still wasn’t getting better. She asked me if she would suffer the nausea and the vomiting forever.
All of the evidence said yes, she would be condemned with lifelong chronic symptoms. So I made it my mission to research and find the best possible care because people need hope.
“You have to give people hope.”
A spokeswoman for the state government affiliated Agency for Clinical Innovation told Access News that NSW Health had received a proposal for a NSW Centre of Excellence in Gastrointestinal Motility Disorders which would be “considered by relevant authorities”.
However, the spokeswoman would not disclose who lodged the proposal, nor who would approve or reject it.
Emily’s story of pain too common
AFTER almost 10 years of regular visits to the doctor for debilitating stomach pain, Emily eventually discovered she had gastroparesis.
The chronic condition had plagued her since she was a toddler but her symptoms were downplayed by medics who ignorantly suggested it was a ploy by her to seek attention.
After a myriad of exhausting tests, the 22-year-old from Glenmore Park was eventually diagnosed with idiopathic gastroparesis after food was found in her stomach in spite of not having eaten for 24 hours.
“I had 23 hospital admissions in 2015. Every day is a constant battle with feeling sick, vomiting, and severe pain, though I have good days and bad days. My good days are equivalent to other people’s awful days. Gastroparesis has affected every part of my life, my job, my study, and my relationships,” she said.
And her story is common among gastroparesis sufferers across the state.
“So many doctors and nurses during the last few years have assumed I have an eating disorder or that I’m lying or just couldn’t wrap their heads around the disease. We need awareness, we need funding,” she said.
Emily said a lack of knowledge of gastroparesis among the wider medical community had forced her to bypass her local hospital at Penrith to seek specialised care at Campbelltown.
“My gastroenterologist was good, though his view was ‘I don’t want to try any other treatments because they either won’t work or may make you worse. You have to learn to live with what you’ve got,” she said.
“One of the hardest things is co-ordinating my care. I see a dietician at Nepean and Dr Ho at Campbelltown.
“Having a Centre of Excellence would mean my doctors could work as a team under the one roof.”
