LDAA response to the DSCATT Clinical Pathway
On 2 August 2021 we released our official response to the Department of Health’s Disabling Symptom Complexes Attributable to Ticks (DSCATT) Clinical Pathway*.
Once again the Department of Health has failed Lyme patients. Sign our petition to Minister Greg Hunt.
According to the document’s Summary:
The Debilitating Symptom Complexes Attributed to Ticks (DSCATT) Clinical Pathway has been developed to support decision-making on differential diagnosis and referral pathways for patients presenting with either new onset or unresolved debilitating symptoms with or without a history of tick bites and that cannot be attributed to another condition (acute or chronic).
You may remember that twelve recommendations were made in the Final Report of the 2016 Senate Inquiry into Lyme-like Illness in Australia. The recommendations acknowledged the need for a consistent, national and multi-disciplinary approach to tick-borne illness, and the need for guidelines for GPs in dealing with complex illness.
Two of the twelve recommendations mention a clinical trial of treatment guidelines, and urgency was suggested around the planning of a summit, with the attending parties to contribute to the development of a framework for patient-centred multidisciplinary care teams. So far, neither has occurred.
There was also urgency around the committee’s recommendation of undertaking an epidemiological assessment of the prevalence of suspected tick-borne illness in Australia, the process and findings of which are to be made publicly available. To date, no surveillance of Lyme and associated illnesses has begun.
Despite these recommendations, the Department of Health instead engaged consultants Allen & Clarke to develop the DSCATT Clinical Pathway, allegedly underpinned by a literature review of the current evidence.
Once again, patients have been put last, instead of first.
Our response to the Clinical Pathway is a letter of deep concern, outlining its many inaccuracies, and is endorsed by over 60 international Lyme scientists, clinicians and advocates. It has been formally submitted to Australian Minister for Health, Greg Hunt, as well as media outlets and many other stakeholders.
We understand many Australian Lyme and other tick-borne disease patients are feeling fear, disbelief and dismay in relation to the Pathway’s ramifications. For example, General Practitioners must refer patients to an infectious diseases expert or microbiologist if Lyme is suspected. But Lyme will only be considered if the patient has travelled overseas.
“I pray for the Australian people that this clinical pathway is not instituted. It is incomplete and misleading and requires major revisions before undergoing a clinical trial. This document if instituted, is likely to contribute to ongoing patient suffering and potentially death in Australia.”Dr Richard Horowitz, US-based international Lyme expert, consultant to the Department of Health and LDAA patron.
After so many Lyme warriors and their families stood up and bravely told their stories at Inquiry hearings, it is hard to comprehend the slap in the face that is this document. No one could have predicted that the situation for our community would, or could become even worse.
Please know that we will not be deterred.
Our response is only just beginning. We are putting our health policy decision-makers on notice by ensuring the DSCATT Clinical Pathway is refuted extensively at a global level. The neglect and abandonment of Australian Lyme patients is an international disgrace.
“It is a waste of taxpayers funds”.
“It creates a black and white picture when the reality is not black and white”.Karl McManus Foundation, December 2020.
Clinical pathways are standardised, evidence-based multidisciplinary management plans, which identify an appropriate sequence of clinical interventions, timeframes, milestones and expected outcomes for an homogenous patient group (Queensland Health Clinical Pathways Board definition 2002).