The regulator has clapped back at the implication that it and the Medical Boards have “targeted” medical professions diagnosing and treating patients with Lyme-like disease.
The Australian Health Practitioner Regulation Agency has denied that it targets doctors treating Lyme-like disease, pointing to bad press as the problem.
Wednesday morning’s session of the Senate inquiry into access to diagnosis and treatment of people with tick-borne diseases saw widespread criticism of the Australian government’s response, namely its refusal to support the diagnosis of locally acquired Lyme disease, forcing doctors to treat the disease “by stealth”.
Speaking at the inquiry, national director of notifications and regulatory operations at AHPRA Matthew Hardy hit back at the criticism.
“I accept that there may be a perception that the Medical Board and AHPRA have targeted medical practitioners who diagnose and treat patients with Lyme-like illness, and I want to say again that that’s not true,” he said.
“We hear from some medical practitioners that they fear losing their registration if they diagnose and provide treatment to patients; this is also not correct.
“However, I do accept that the publicity generated by some of the actions that we have taken in response to individual complaints might create that impression.”
Mr Hardy said medical practitioners were expected to “practise good medicine in keeping with the Medical Board’s code of conduct”.
“When notifications are made about a practitioner who’s treating a patient for Lyme-like illness or tick-borne disease, we assess whether the practitioner’s providing care to those patients in a safe way,” he said.
“In cases where the Medical Board has taken regulatory action, there has been an assessment that actual harm was suffered by a patient, the Medical Board has sought independent expert advice from appropriately qualified infectious disease specialist practitioners about the safety of the care that was provided by the practitioner, and action has been taken only where the care provided has been determined by the board, on the evidence before it, to have been unsafe.”
Mr Hardy said there was “no doubt” that there were patients “with serious, chronic and debilitating illnesses who have a diagnosis attributed to tick-borne disease and/or Lyme-like illness, based on their symptoms and/or results from accredited laboratories”.
He said AHPRA supported further research into this disease and the development of appropriate clinical guidelines by the appropriate entities.
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In 2016, following an earlier Senate inquiry into tick-borne disease, the DoHAC developed the debilitating symptom complexes attributed to ticks (DSCATT) clinical pathway.
The pathway recieved criticism at the hearing, as did the government’s broader response to the inquiry.
Queensland Senator Penny Allman-Payne, who is chairing the inquiry, said that she was “really shocked” at the department’s position, as stated in its submission, that significant action has been taken following the 2016 inquiry.
Speaking on behalf of the RACGP as a member of the college’s expert committee into quality care, Dr Gary Deed called out the murky treatment guidance.
“I acknowledge that these diseases are challenging to diagnose, and we, as GPs, would appreciate clearer information and evidence-based resources to assist in the diagnosis and ongoing care for people with tick-borne illnesses, or DSCATT,” he said.
When asked about GPs’ reluctance to treat DSCATT, Dr Deed said it was common for health professionals to feel unsupported in environments where there was limited evidence, but acknowledged the difficulty and anguish felt by those living with DSCATT.
He said GPs had to rely on principles of patient centred care and reminded GPs to “hear what the patient is saying”.
Dr Deed said GPs were currently faced with “very dry clinical pathways” which should be expanded to incorporate “the patient voice”.
Principal medical adviser for the interim Australian Centre for Disease Control Professor Gary Lum said the pathway was aimed at helping with decision support and that the term should not be equated with a diagnosis.
“It’s very patient centred and it’s meant to be around assisting medical practitioners caring for patients with decision support in a patient-centric and compassionate, empathetic way,” he said.
Professor Lum advised Dr Richard Schoeffel, a GP who gave evidence earlier in the inquiry on his treatment of tick-borne-disease-type symptoms, to submit the guidelines he had collated to the NHMRC clinical guidelines portal.
He said the CDC would provide an opportunity to improve public communication around tick-borne diseases.
When asked about the position that Lyme disease does not exist in Australia, Dr Deed said the current diagnostic processes were “very black and white”.
“I think the absolute problem with diagnosis being black and white there, as you mentioned before, is that there are people with immune deficiencies that don’t develop certain immune responses until well into their illness,” he said.
“This is an area where we need more evidence and better certainty.
“They absolutely rule it out, and they rule out that patients may have a tick-borne illness.”
Dr Deed identified three levels of issues: systemic – barriers to spending sufficient time with patients, GP – a lack of clear guidance – and patient.
“Patients have often been through—if I can use a term that’s negative—the ‘wringer’, so to speak, already,” he said.
“When they need a general practitioner, they need someone who will hear and listen to their story and take an accurate history at the same time without having barriers put up.
“Patients sometimes won’t talk about it because they have had a negative experience.
“So there is this vacuum of patients being reluctant to engage in consults because they have been told that it is nothing real.”
Dr Deed said it was “a very clear call” to acknowledge that DSCATT exists.
“I don’t know whether we can go to the term ‘disease’ until you’ve got a clear etiology, and it requires a lot of definition around disease.
“I’d love to not encourage patients to spend tens of thousands of dollars.
“If we can offset that financial harm to patients—I think that’s important.
“So it’s what not to do, and what the evidence is around that, and what to do in diagnostic uncertainty.”