RACGP creates specific interests group for doctors treating the patients dismissed as heartsinks
During his GP training, Dr Jason Lam was told to watch out for the patients arriving with headphones, a soft toy and a folder of notes because they were clearly heartsink patients.
With hindsight, he says it was horrifying to hear.
Many of these patients, he says, had energy-limiting conditions such as POTS, ME/CFS, long COVID, hypermobility disorders and mast cell activation syndrome, often alongside neurodivergence, endometriosis and other comorbidities.
“I can’t believe someone described it like that to me,” he told AusDoc.
Dr Lam is part of the RACGP’s newest Specific Interests Group. Along with existing groups for diabetes, breast medicine, pain management and more, the college has created a group for what it calls energy-limiting and post-infection conditions.
The soft toys or headphones carried by the patients that Dr Lam was warned to beware were probably because they had autism and were overwhelmed by environments that were not set up for them, he says.
The folders of notes were because they had to do the labour of keeping track of their records as they went to doctor after doctor.
“It’s horrible … We are against them from the word go, before they are even in the consulting room.”
The conditions these patients face often “travel in packs”, Dr Lam says, with roughly two-thirds concordance among POTS, hypermobility, mast cell activation syndrome and neurodivergence.
It means the medicine is complex, but he says it’s not heartsink medicine — it’s immensely satisfying.
Keen for others to see the work the same, he adds: “These patients are challenging and they’re suffering. But isn’t that what the heck we’ve gotten into general practice for?
“I didn’t do medicine to tick boxes. The problem-solving is fun and the impact you can make is extraordinary.
“Even the simple act of validation shifts the experience for the patient when they’ve had shit experiences for years.”
He says he has seen patients who had missed years 11 and 12 because of POTS re-engage with life. One is now preparing for university.
“How rewarding it is to have someone go from housebound to engaging in life?
“Come on. As a doctor, it doesn’t get much better than that.
“Yeah, it’s not quite Lazarus, but we don’t have many chances in medicine to be able to do something like that.”
POTS takes seven years to diagnose on average, while hypermobility disorders take 12, according to Dr Lam.
These diagnostic delays result from patients feeling dismissed, he says.
“Every time they bring up their symptoms, they can see the eye roll. They can feel the dismissal. So, they learn not to bring this stuff up.
“There are lots of good GPs, but I don’t think we can pat ourselves on the back. When there’s a seven-year lag on a diagnosis, something has gone wrong.
“All the people who treat POTS are completely booked out. I have a wait list of 137 people.”
Their circumstances put these patients in direct conflict with the ‘one issue per consult’ rule common in general practice, he adds.
“We miss things when we prioritise a patient’s top issue.
“We’re always told the great thing about GPs is that we see patients again over time, and that’s true, but it might be a long time.
“And when that time comes, there might be another crisis, a virus, a broken finger, and you only deal with that.”
While patients have often researched their symptoms and bring their own diagnosis, Dr Lam urges GPs not to dismiss this information as interference from Dr Google.
“Patients have told me specialists tore up their medical history and said, ‘These are diagnoses of the internet. You should lose weight and see a psychologist.’
“The gaslighting of patients is massively frustrating.”
He says well-prepared patients can sometimes rankle doctors’ egos.
“That’s despite the patient probably having their condition longer than it took the doctor to complete medical school.
“But it’s also a problem of our hyperspecialised workforce where we valorise the single-organ specialist.”
Energy-limiting conditions can come across as “a rich white girl problem”, he says, but that is because poorer patients may never be diagnosed because of the time and cost of investigations.
“There’s no public access. Literally every public hospital will tell hypermobility patients to kindly bugger off.
“That’s the next challenge. Could there be a public clinic, something like the endometriosis clinics?
“There’s a huge amount of work to do.”
Dr Jason Lam’s How to Treat article on energy-limiting conditions will be published in a forthcoming edition of Australian Doctor.
