Families and carers are being excluded from plans to support their loved ones in the ACT's mental health system due to the territory's strict health privacy laws, prompting calls for changes to legislation.
The ACT government is being urged to consider changes to its Mental Health Act to allow more information to be shared with families and carers.
This has followed research which found confidentiality was used to avoid working with families and this meant crucial information that could have supported those in suicidal distress.
The research from the Australian National University and Relationships Australia interviewed 17 people who had family members who died by suicide in the ACT.
The study found serious flaws within the ACT's mental health system, including that family members were excluded from supporting their loved ones.
The research found the withholding of information by health services to families meant they were often left unaware of what was going on.
"While seemingly done out of respect for confidentiality, family members struggled to obtain even the most basic information about how to support their loved ones and it was not clear if consent was ever sought from service-users to nominate family members as designated carers or to share information with them," the research said.
"Participants understood the need for confidentiality, but several of them struggled to get information on how best to support their loved ones, putting them in a difficult position, especially for those living under the same roof."
One person who was interviewed said the failure of health services to share information about their son's suicidal thoughts had "significant repercussions for how they acted, or more importantly, did not act, to put in place measures that may have prevented his suicide".
The research recommended the ACT enhance its professional guidelines to help engage families and carers.
Lead researcher Kerrie Gallagher said the support of families and carers was vital for those experiencing suicidal distress.
"I'm so aware that's not always available but when it is it is absolute gold and it is the greatest protection for that person's safety," she said.
"If there are people whose loved one is not in a good space we need to welcome them into the process, we need to make them apart of the process and we don't block them."
Carers ACT and Mental Health Carers Voice are also calling for a review of legislation. The organisations said, in a submission to an inquiry into trauma support services in the ACT, carers often felt excluded due to concerns over privacy breaches.
"Carers often report that they are systemically excluded from care planning due to concerns from staff over potential breaches of privacy and consent laws," the submission said.
"Clinicians often hesitate to share information with carers due to privacy and consent concerns, even when the individual resides with the family. This inevitably creates obstacles to delivering effective care and support."
The organisations said the ACT should review legislation in NSW, which allows carers to self-identify and share information.
The territory's health privacy laws have been used to block information about the release of COVID data and alleged violent incidents at the Dhulwa Mental Health Unit. The ACT government has flagged a review of these laws.
ACT Mental Health Minister Emma Davidson said updates to the access and disclosure of mental health information for families and carers may be considered in future reviews of the Mental Health Act.
She said any review of the legislation would consider laws in other jurisdictions.
Ms Davidson said the Mental Health Act had a number of provisions for patients to provide their preferences for treatment, care and support in the event they cannot do so in the future.
"This includes entering into an advance agreement, advance consent direction or appointing a nominated person, such as a carer or family member, to make decisions and access information on their behalf," she said.
The ACT's chief psychiatrist also issued an advisory note to health workers in 2023 about the circumstances in which health information could be disclosed to families and carers when the consent of the person was not available.
- Support is available for those who may be distressed. Phone Lifeline 13 11 14; Mensline 1300 789 978; Kids Helpline 1800 551 800; beyondblue 1300 224 636; 1800-RESPECT 1800 737 732.
