Patients Unite for Think Tank

On Wednesday last week (8th May) we attended a Think Tank in Sydney. It was run by Allen & Clarke, a public policy consulting firm who have been contracted by the Australian Government Department of Health to develop an evidenced-based clinical pathway and multidisciplinary care model for patients suffering from Debilitating Symptom Complexes Attributed to Ticks (DSCATT); we call it Australian Lyme disease.

The purpose of the Think Tank was to bring together all those people with an interest in the topic including patients, medical and allied health professionals, representatives of medical colleges and public health officials. There were around 30 attendees with a additional 14 or so joining online.

While we expect to see a formal report of the day, we thought it was appropriate to update the community on the things we learnt and were able to contribute to on behalf of patients.

Firstly, the project is expected to take 9 months with a recommended clinical pathway being presented to the appropriate government health committee for approval by February 2020. Allen & Clarke presented their development plan which includes significant consultation with the community. If you are in or near Sydney, Brisbane, Melbourne, Canberra or Perth you’ll be able to attend an in-person consultation about the draft clinical pathway and provide your feedback. For people outside of the major cities a virtual, or online option is also planned.

This is the first time we’ve seen such commitment to broad consultation with the community and is very reassuring; but its success depends on our input. As soon as we know about the timing of the consultation sessions, we’ll let you know.

WHAT IS A CLINICAL PATHWAY?

Since we are new to this, we appreciated the explanation of what clinical pathways are, but we remain a little sceptical when we see words like ‘standard’, because most of us know that Australian Lyme disease and its associated impacts are anything but ‘standard’. While we appreciate that there needs to be some standards to inform guidelines for medical professionals, the complexity of the illness is going to complicate standardisation.

Many of you already know that Dr Richard Horowitz, our Patron, has developed a 16 Point differential diagnostic map, but within it are hundreds of points about related medical conditions and considerations in laboratory testing. Dr Horowitz’ model has been developed over many years, it is developed through on his extensive clinical experience and is the model is drawn from thousands of pieces of evidence in patient medical charts.

During the Think Tank we workshopped many ideas about the stages of clinical care: from assessment of a patient and diagnosis; how to treat and manage patients; when to refer a patient to specialist/s; and what the important issues are in recovery and self-management for patients. We revisited the common signs and symptoms associated with Lyme-like illness in Australia and covered the huge list of alternative diagnosis patients had experienced.

WHAT PATIENTS WANT

It was very encouraging to see that Allen & Clarke had reviewed many patient stories and extracted a range of patient needs, although they’ve described them as ‘wants’. It is important for the patient community to ensure that their needs are addressed within the clinical pathway and especially in design and development of multidisciplinary care teams. It's also important that the ‘wants’ of patients are not confused with their rights; every Australian has a right to informed, accessible, non-discriminatory health services, irrespective of their illness label. 

It's just a start

There is much more work to progress over the coming months but overall, we were encouraged by the open and progressive discussion, the commitment to ongoing consultation and an authentic desire to ensure that the clinical pathway is acceptable to patients.

However, we are also very aware of the complexity involved in this illness and all its systemic manifestations. We’d have been much more excited if we’d heard of a truly transformational approach using a personalised medicine model that takes account of the diverse and interchangeable symptoms we suffer.

While we appreciate the effort to date, we expect to see more work on a critical analysis of the literature available in Australia. We are also expecting to see and participate in a comprehensive contextual inquiry that informs the design and development of the clinical pathway and multi-disciplinary care models. A clinical pathway designed without regard for the current clinical context for medical professionals or for patients is not going to be helpful to anyone.

The LDAA's submissions highlight the Australian context which includes extensive stigma and discrimination, the ongoing threat of medico-legal action for practitioners diagnosing and treating Lyme-like illness, the inadequate and misleading pathology diagnostic situation, lack of research and the complete absence of surveillance and epidemiological data.

We have an incredible opportunity to leap frog old thinking and demonstrate leadership in the way we approach this issue in Australia.

Australian Lyme disease is a systemic and chronic zoonotic illness and requires a OneHealth and personalised medicine approach not a standardised clinical care model.
We will keep you updated on progress as it emerges.