Involving consumers and carers

Table of contents

Involving consumers and carers

Why involve consumers and carers

Involving consumers and carers in GP mental health training enhances a GPs understanding of lived experience, improves communication skills, and promotes person-centred care by highlighting real-world challenges.

Their insights help reduce stigma, refine GPs' approach to consultations, and ensure training is relevant to patients' needs. By emphasising shared decision-making and the role of support networks, their involvement fosters more compassionate, holistic, and effective mental health care.
Involving consumers and carers is one of the most important parts of developing an activity, and time should be taken to ensure this is done adequately.

Sourcing consumers and carers

To source consumers and carers, you can use your existing networks, or organisations such as:

Lived Experience Australia
https://www.livedexperienceaustralia.com.au/
Phone: 1300 620 042
National Mental Health Consumer Alliance
https://nmhca.org.au/
admin@nmhca.org.au
Mental health carers Australia
https://www.mentalhealthcarersaustralia.org.au/
info@mentalhealthcarersaustralia.org.au

Selecting consumers and carers

You must select consumers and carers who:

have personal experience of mental illness, or of caring for someone with a mental illness
have accessed and navigated mental health services, particularly through primary care
have the appropriate skills to effectively contribute to the planning, development, delivery and review of your course
have previously contributed to multidisciplinary projects in primary care or other programs in the mental health sector
are involved with a recognised consumer or carer advocacy organisation, with a preference being to engage a lived experience educator

You should select consumers and carers who:

reflect diversity in age, culture, gender, and socio-economic status, as it is important to highlight that mental health experiences vary widely
have an ability to discuss how overlapping identities (e.g., LGBTQI+, Aboriginal and Torres Strait Islander people) influence mental health and care experiences

Supporting consumers and carers

You must provide appropriate support to consumers and carers throughout their involvement. Suggested guidelines for involving Consumer and Carers in training videos include:

Involve a consumer and carer to develop the expression of interest and plan the questions that will be asked during the making of the video
Ensure expression of interest includes why this is happening, what will be involved and how the video will be used
Always ask your consumer and carer their preferred method of receiving information and payments – do not assume they have certain systems or access
Prior to commencing the video ensure that you go through any disclaimer with them (What the video will be used for, who will own the video, where will it be used) and allow them to make an informed choice as to whether they will participate
Prior to recording ensure that the interviewer is across the questions that need to be asked. Do not expect the person to just ‘tell their story’
Debrief with the person after and ensure they have support in place
Allow the consumer and carer to see the edited version before agreeing to it being used.
Follow-up with the consumer and carer after the training is delivered to inform future training requirements and ensure the consumer and carer are satisfied with outcomes.

Achieving genuine involvement of consumers and carers

To achieve genuine consumer and carer involvement, you must:

actively involve carers and consumers in all stages of the course, including the:
- initial planning processes
- development of program content and materials
- delivery of the course
- review and evaluation of the course
limit their contributions to a consumer or carer perspective so that they do not take on other roles (for more information, see No dual roles for consumers and carers)
recognise that the perspectives of consumers and the perspectives of carers are usually different, and therefore actively and separately address each perspective (carer and consumer) in each stage.

Table 5 shows the nature of involvement that is required at each stage.

Table 5. Consumer and carer involvement in skills training courses

Stage	Consumer and carer involvement
Planning	Active involvement in the formal planning process, from the beginning of planning and/or development Representation on planning or advisory groups.
Development	Active contribution to the selection and/or development of program content, including course materials and resources. Input from experienced individuals or consultation with focus groups.
Delivery	For each consumer and carer, a minimum 15-minute presentation of their perspective or lived experience in an interactive discussion (see Presentations by consumers and carers).
Review	Involvement in the formal review of the training including a review of the learning outcomes and evaluation and feedback received by participants.

No dual roles for consumers and carers

A consumer or carer must provide the perspective of either a consumer or a carer but not both. For example, a carer who has also experienced mental illness cannot represent both the carer and consumer perspectives.
While someone’s lived experience in more than one role may give them greater perspective, it is preferable that each person brings just one perspective to their involvement in your course.

Similarly, if you involve a health professional who is also a consumer or carer, their involvement must not inform their lived experience as a consumer or carer. For example, it is inappropriate for a GP to present their lived experienced as a consumer or carer.

Presentations by consumers and carers

An experienced consumer and an experienced carer should present during an interactive session where participants can ask questions about their lived experience of mental illness perspectives. This should include their perspectives of relevant issues, such as challenges, treatment, and recovery from a trauma-informed perspective.
An effective way of presenting these interactive discussions is to conduct an interview, so that you make sure all areas are covered (see Suggested questions to ask a consumer and Suggested questions to ask a carer).

Consumers and carers with particular skills

Consumers and carers with appropriate skills could lead a discussion based on their lived experiences and their perspectives on treatment and recovery.
Appropriately experienced consumers and carers could also give feedback during role-plays.

Video conferencing/recorded presentations

If the consumer and/or carer is unable to present in person, or if the course is an e-learning one, contact the GPMHSC Secretariat to discuss alternatives that meet the learning outcomes.

Other alternatives include live video conferencing, written narratives, or pre-recorded videos. Please ensure you are submitting all consumer and carer presentations as part of your application as per face-to-face programs.
Recorded presentations should be fit for purpose, i.e. recorded for the purpose of the mental health activity you are accrediting.

Video conferencing/recorded presentations should be completed in a quiet room, with microphones and sound pre-tested before recording.

Recorded presentations should be up to date and relevant (no less than two years old).
Review a script or talking points prior, to ensure the content aligns with the specific objectives of the training activity, addressing key topics such as diagnosis, treatment, recovery, and systemic challenges.

Topic	Sample questions for consumers
Diagnosis of your mental illness	When were you first diagnosed with a mental illness? What was the impact of a diagnosis for you? Was the diagnosis helpful?
Seeing your GP	What was helpful/unhelpful? How involved were you in the development of the GP MHTP? What else could the GP have done to help you receive the treatment and support you needed?
Impact of your mental illness	How has your mental illness impacted your life? What were some of the positive and negative aspects of living with a mental health illness?
Recovery	What does recovery mean to you? What strategies do you use to manage your mental health illness? What services or resources have helped you in your recovery?

Topic	Sample questions for carers
Your role as a carer	What is your relationship with the person living with a mental illness? How long have you been in this role?
The impact of being a carer on your life and wellbeing	Can you describe how your role of carer has affected your life? How does caring for a person living with a mental illness affect your daily life? What do you do to take care of yourself while undertaking your role as a carer?
Seeing your GP	What has been helpful/unhelpful about the help you have received from your GP? Were you involved in the development of the GP MHTP for the person you care for? If so, was this helpful? What do you want GPs to know about the caring role?
Recovery	What does recovery mean to you? What has been your role in the recovery journey of the person you care for? What services or resources have helped the person you care for in their recovery?