Your Healthcare Rights

What to do when doctors let you down

In Australia, it is not uncommon for doctors and specialists to behave unprofessionally toward Lyme and associated disease patients. Sadly, there is a high likelihood that a patient will experience condescension, disbelief and suggestions that “it’s all in your head” and “we don’t have Lyme here” from Australian medical professionals.

As Lyme symptoms mimic many other health conditions, misdiagnosis is a strong possibility.

Often, if the practitioner cannot achieve a diagnosis, or simply doesn’t believe the patient and their long list of multi-system symptoms, they will be erroneously referred for psychological/psychiatric assistance.

There is a name for this kind of behaviour; that is, when a practitioner is denying your lived experience, victim-blaming and/or brushing off symptoms as psychosomatic: medical gaslighting.

Medical gaslighting should never happen to any patient, ever, and can have serious health ramifications, particularly if experienced repeatedly. The impacts of serious illness are difficult enough to cope with, without being subjected to unprofessional and uncompassionate treatment. It can be a very traumatic experience.

The Government has been made aware of this issue via regular correspondence by us and other patient advocacy groups.

We will continue to campaign and lobby authorities until the situation changes. In the meantime, we have some suggestions for you:

• Show yourself the compassion that you should have been given. The way you were treated is not your fault, and you need and deserve care. Talk to Lifeline, your regular psychologist/counsellor, or a loved one about the way you are feeling.
• If possible, take a support person with you to appointments.

Take action

Did you know that the Australian Healthcare Charter states “Everyone has the right to be treated with dignity, respect and compassion?” And that you have the right to ask for a second opinion about your care and treatment? You also have the right to give feedback or make a complaint, without it affecting the way you are treated. We strongly recommend that you exercise your rights.

Here are some things you can do:

• Make a complaint. Find out about your healthcare rights (includes state-by-state list of complaint organisations).
  
• Find out about the Australian Commission on Safety and Quality in Health Care and the Australian Charter of Healthcare Rights.
  
  • Australian Charter of Healthcare Rights brochure.
    
• If you have been admitted to a Queensland Health public hospital (applies also to some Hospital in the Home services) you may consider invoking Ryan’s Rule. This is an escalation process to support patients, their families and carers, to raise concerns if a patient’s health condition is getting worse or not improving as well as expected. (Note: This is a request for a Clinical Review for specific cases, NOT a general complaints service).
  
• Find out about similar processes to Ryan’s Rule in other states.
  
• Contact your local Member of Parliament (find your local MP/Senators) and/or the office of the Health Minister.

Under the United Nations International Covenant on Economic Social and Cultural Rights (ICESCR), which Australia is a party to, you have a ‘right to health’. This includes the right to a system of health protection which provides equality of opportunity for people to enjoy a variety of facilities, goods, services and conditions necessary for the individual to realise his or her highest attainable standard of health, in their country. Find out more on the ‘right to health’.

Copyright Lyme Disease Association of Australia.