Topic Tuesday // Feeling excluded in a loved ones treatment journey // Tues 21 Aug, 7pm AEDT

[Lynne1]

Hi Yumbo, you've chosen well. To me, this statement covers a great deal. It's so helpful, such a relief, to be respectfully included as a partner. Sometimes I've felt that service providers might be somewhat suspicious of carers, seeing them inappropriately involved, when the vast, vast majority are motivated by love and a willingness to contribute in a positive way.

[Former-Member]

It's certainly useful to be aware of and advocate for your rights @CharlieBravo where you feel as though your voice isn't being heard. Not easy to do. 

[Yumbo]

I agree the wording needs to be stronger in the Act. A funny but true story of the Act is that my Mum now carries around a copy of the Act in her handbag! She is a very strong and wise woman 😍

[Lynne1]

That's well supported by research, Darcy. The old medical model put senior professionals on a higher level, 'experts'.

[Lynne1]

Yumbo, good on your Mum! Love the word-picture you've made

[Former-Member]

The RANZCP guideline 76 supporting carers in the mental health system includes this paragraph: 

Carers rely on health practitioners to provide them with information about their family member’s
diagnosis, the rationale for treatments and the likely outcomes. However, many health practitioners
refuse to release information due to fears of breaching patient privacy and confidentiality [3]
. Carers
should be aware that The Australian Carers Recognition Act 2010 [3]
and the New Zealand Health Act
1956 [11]
both include provisions that health service providers must give carers sufficient information to
assist them in their carer role.

https://www.google.com.au/url?sa=t&source=web&rct=j&url=https://www.ranzcp.org/Files/Resources/76-Su...

[Lynne1]

1. The development of Standards for mental health services

I was also empowered when I learned that mental health services are now being required to meet certain standards in relation to carers. A wonderful resource is ‘A Practical Guide for Working with Carers of People with a Mental Illness’, available online. This resource explains HOW a service can work together with carers. Below is an extract (p. 5):

• Recognise who carers are and acknowledge the importance of their role

• Always welcome carers and enquire about their reason for visiting or contacting the service

• Request information from carers to assist with the care and support of the consumer

• Provide information about our service, including its purpose and how it can be contacted

• Provide information about carer rights and responsibilities

• Ask if carers have and questions and do our best to answer them

• Explain what can, and cannot, be discussed

• Refer carers to separate carer information and support services

• Ensure carers are fully engaged in all stages of care

Each of these are explained as measurable standards, with hints and ways that a service can ensure it meets the needs of carers.

Qu: Are there any surprises here for you? Do you have a ‘good news’ story as it relates to any of these standards in your own experience?

[Former-Member]

Thanks for sharing @Former-Member!

[Former-Member]

Barrier’s to inclusion in a loved one’s treatment journey

• It’s unclear who is involved in your loved one’s treatment team
• It’s unclear what rights you have as a Carer
• Your loved one is concerned about what family and friends may disclose to their treatment team
• The treatment team are difficult to contact
• Your loved one is concerned that including family and friends may be unhelpful
• It’s unclear who the best person in the treatment team is for family and friends to contact
• Your loved one is experiencing difficulties with trust and are not open to including family and friends in their treatment
• Your loved one has had a past negative experience of including family or friends in their treatment journey
• The culture of the health service doesn’t actively promote inclusion of family and friends
• Your loved one is concerned what treatment team may disclose to family and friends
• It’s unclear whether there are culturally appropriate support options e.g. interpreting service available for friends or family members to engage with treatment team

[Lynne1]

Well spotted, Darcy. The framework is there, it's taking time to penetrate the system. I know that in the aged care system, standards of care are taken very seriously because ultimately they're linked to funding. Some services have been closed down because they didn't meet standards (a rare event but it has happened in Hobart).