Expert weighs in on the Netflix documentary that tore a family apart

Key points:

• Complex regional pain syndrome (CRPS) varies case-by-case, with some acquiring the condition after an injury, surgery or heart attack
• Generally, the condition impacts the afflicted person in a way which leaves them feeling seriously wounded despite relatively innocuous activity or contact which would not register as intense pain in a person without the condition
• The Netflix documentary Take Care of Maya (2023) chronicles the history of a family which endured division, in-fighting and legal proceedings whilst trying to treat their 10-year-old daughter’s condition

Neuroscience Research Australia (NeuRA) expert in complex regional pain syndrome (CRPS) and pain specialist Dr James McAuley spoke to Talking Disability journalist David McManus about the new Netflix documentary — Take Care of Maya (2023).

The film covers the Kowalski family, with retired firefighter and father, Jack, along with wife, Beata, seeking medical care for their 10-year-old daughter Maya. Trying to find support for their daughter, the family felt a rift separating their close-knit bond, with the mother, later, (falsely) diagnosed with Munchausen syndrome by proxy, causing her to be restricted from contacting her child and months of Maya’s life to be spent in state custody. Misattribution in Munchausen syndrome by proxy is likely due to the invisible and intangible nature of the debilitating impairment.

Access to the National Disability Insurance Scheme (NDIS) and funding for impairment support is assessed on a case-by-case basis. Some cases have set precedent for CRPS — such as Ms Schwartz’ successful attempt to access support.

Professor James McAuley says that the distinction between CRPS as a neurological condition, as opposed to a mental illness, is often important to someone who lives with the condition. Mr McAuley adds that often, people living with unbearable, yet invisible pain, just want confirmation that they aren’t ‘making it all up.’

Professor McAuley came to Australia after completing his PhD in London’s Brunel University in 2003, investing time in post-doctoral work at the University of New South Wales before becoming a professor in 2020. Throughout his career, James is credited with over 200 published articles and is trusted with over $10 million dollars of research funding.

“What I do know about CRPS is there are clear diagnostic criteria that if someone has CRPS, then a doctor should be able to diagnose that based on the signs and symptoms […] the problem is if you fit just under that diagnosis and there’s a large proportion of people who don’t quite have CRPS, but they do have ongoing symptoms — an ongoing problem that’s causing pain,” says Prof McAuley.

“This is an unmet need in this country, these people are suffering a great deal and with no access to any services — have no idea what to do and struggle to get on with their lives.”

James says that the number of people who actually go to see a doctor to lie about invisible chronic pain is so insignificant compared to the number of people actively trying to access support, that it’s not worth denying support to many people who feel lost for support. Admittedly, the professor states that as a researcher, it isn’t necessarily his decision to make.

“I don’t really know how to answer that,” he adds, “it’s a bit above my pay grade.”

However, looking at Maya’s situation — Professor McAuley says that the lack of public awareness surrounding CRPS and the lack of viable support is something which NeuRA is trying to address through two clinical trials.

James concludes that people living with CRPS or feel they may have the condition should get in touch with the research institute to take part in the two efficacy programs for future treatment. The Government funded trial will be conducted through telehealth services and Professor McAuley encourages people to take part for treatment with chronic pain, along with the mental health impacts which may arise as a result.