Lived Experience Forum

[Being]

Hi everyone,

This is Jaime and Kirsten from Being, the Mental Health and Wellness Consumer Advisory Group. We're currently preparing a response for the Law Reform Commission's review of the Guardianship Act (NSW) and would greatly appreciate your input. We have been responding to their question papers over the last year and are making one last submission. We are particularly looking to hear about peoples' experiences on the issues below and the changes you would like to see to the system. We will use this information to prepare our submission, present at Guardianship forums we attend and in our other submissions. Any information you provide will be completely anonymous.

We're particularly interested in the following things. Please feel free to respond to any that are important to you:

• Medical and dental consent
  • Who do you think should be able to give consent for medical and dental treatment and under what circumstances?
  • Should medical and dental consent fall under a formal supported decision making system (where you retain the power to make decisions but have a formal support person to support you with this), or stay using substituted decision making (where there is a person who makes decisions on your behalf)? 
• Restrictive practices (seclusion and restraint)
  • Being strongly supports eliminating restrictive practices such as restraint and seclusion. What are your thoughts on this issue? Do you think medication can be considered a 'chemical restraint', and what approach would you want us to take to that in our submission?
  • Should there be specific legislation about restrictive practices? Who do you think should be covered by these regulations? Other quesitons include: definitions of restrictive practices; when they can be used; who can authorize them; what should happen if someone has had a restrictive practice happen; and who should be allowed to make the decision about using a restrictive practice.
• Wellness plans
  • Have you ever had an advanced care directive or a wellness plan? What experience did you have of these? What worked well about it and what did not work well?
• Abuse of the supported decision-making system
  • Have you had experiences where people made decisions for you that you weren't happy with or did not represent your preferences? How do you think we can help stop abuse of people who have supporters or substitute decision-makers who are not making decisions that represent their preferences?
• Public Advocate
  • Do you think there should be a separate office in the NSW Government who has the responsibility of advocating for people who may be in situations of abuse or neglect? This would include advocating for individual people and to improve the system. This role would be able to assist people who may have reduced decision-making capacity at the time but who do not (or would prefer not to) have a guardian. Have you been in a situation where this role would have been helpful to you?

Thoughts you have about any of the above topics would be very welcome. Please let us know if you need more information about any of the terms we've used.

Jaime and Kirsten

[Former-Member]

Hi I don't have much feedback except about this bit, having studeied consent at uni and experienced it in real life too as a MH consumer.
Medical and dental consent

• Who do you think should be able to give consent for medical and dental treatment and under what circumstances?
• Should medical and dental consent fall under a formal supported decision making system (where you retain the power to make decisions but have a formal support person to support you with this), or stay using substituted decision making (where there is a person who makes decisions on your behalf)? 

A person is considered about to give conset if it is informed, that is they truly understand what it is they are agreeing to. If I was psychotic and being asked to consent to a treatment, I'd suggest that my ability to understand it would be quite limited. Having said that, regarding your second point, I prefer your first suggestion - where I'd retain the power to make decisions but have a formal support person to support me with it. I'd like to be able to choose the formal support person when I'm well so that I can be sure I trust their decision making for when I'm not well. I don't fully understand the context of your response not having studied the Guardianship Act but these are my lay person views.

[Being]

Hi Liberty,

Thanks for your response. It is helpful for us to get varied opionions, from people who have had experience with the guardianship act, to people who are able to give us a general sense of what they think that would want if they were in that position. Do you think it would be good to be able to have a written plan (wellness plan, advanced care plan) that would outline your wishes? 

[Former-Member]

Hi. Yes those plans are a very good idea for everyone, regardless of whether they have a mental illness as dementia and other diseases could occur. I don't have one though this has made me think about it again. Thanks.