Introduction by Croakey: Stand by for a masterclass in working in “consumer perspective” roles in mental health.
Consumer consultant Wanda Bennetts is the first person to admit that she started out pretty green, and maybe that’s just as well. But she has since used her lived experience to work with multiple mental health organisations, taking on various consumer perspective roles over twenty-two years.
Here, she reflects on what has been done well, what could have been done better, the multiple challenges for those working in consumer roles, and the sweet spots – where the opportunities lie to work with organisations to effect real change.
Bennetts writes in her personal capacity, rather than on behalf of any organisation, as part of Croakey’s Speaking Our Minds series of articles this Mental Health Week.
Wanda Bennetts writes:
I have struggled all my life with my mental health, but 1998 was the beginning of a few harrowing years in the clutches of both the private and the public mental health systems.
At one point, I didn’t feel I would survive and at that very darkest moment. I knew I had to take back control or life would no longer be worth living.
This experience was very personal, but it was the over medicalisation (seeing me as the problem and not the things that had happened to me), and the over prescription of drugs (that to this day have impacted negatively on my physical health) that concerned and confused me.
But, most of all, to my absolute horror I didn’t have the rights I assumed I had (aligned with other medical decisions) such the right to refuse treatment. The loss of this basic right as well as the coercion and fear of having my life controlled by the system have stayed with me and are the reasons I have done this work since the year 2000.
I decided to pursue work in mental health services with the hope that I could improve them. We often call working from such lived experience, working from a “consumer perspective”.
I thought it was as simple as letting people know how things could be done better. My naivety was both a blessing and an impediment in the early years of my work. A blessing because it helped me plunge into the work without a sense of blockages and obstacles in my way. An impediment in that I don’t think it allowed me to do “deep” work that truly “rocked the boat”.
Consumer perspective roles
“Consumer” can be a highly contested word, but the term was developed as a response to the passive role that “patients” have in healthcare systems.
There are many ways that you can work from a consumer perspective: roles include, policy, research, education, peer support, activism, and project work, with each of these requiring different skills.
Today I am mostly writing about the work of consumer consultant roles, but this may also apply to other types of roles.
[This article is written in my personal capacity and not on behalf of any organisation within which I have worked]
Consumer consultants work systemically, and try to use their experience of mental health service-use and their connection to the consumer community to improve services.
It is about facilitating the voices of those who use the services to design, deliver, and evaluate services at every level wherever possible. On a practical level, this can be to try and shape the following:
- How consumers can help influence the service model of care or advocacy
- How consumers can shape policies that determine how they can better have their views and preferences on treatment and their human rights respected
- How consumers can shape the organisation’s advocacy on mental health policy.
The extent to which this is done and the quality of the work varies, depending on how open organisations are to embracing consumer perspectives.
You can work within organisations or outside them, and both have challenges.
From the outside, the advocacy and activism is crucial to raise public awareness. However, most of the work I have chosen to do has been from within organisations that are inherently bureaucratic.
While every consumer worker and organisational context is different, in my twenty-two years in consumer perspective roles, I’ve also noticed that many things are the same.
I have worked in consumer consultant roles within clinical mental health services. These are services that use coercion and compulsory mental health treatment on people every day and this is allowed as we have mental health legislation that makes it possible.
My current work is with Victoria Legal Aid (VLA), an organisation that supports people to understand and exercise their rights when they are accessing mental health services or have other legal issues.
My work with Independent Mental Health Advocacy (IMHA), within VLA, aims to better embed consumer perspectives in their work. To do this I facilitate a consumer advisory group (called Speaking from Experience) which has people with lived experience of mental health issues and/or who have had compulsory mental health treatment.
Like anyone else, sometimes people working in mental health can look at issues through their narrow professional lens and lose sight of the person or people they are serving.
It is our role to give visibility to that on daily decisions the service makes – how it defines good practice, how it designs resources for consumers, and how it undertakes its public advocacy.
Victoria Legal Aid has done that in a good way. Though change is slow, the slowness has often been about wanting to get it right.
Entering a workplace as a consumer worker
I have often said that the work is limited only by time, money, resources and attitudes. But we do know that attitudes are the biggest enabler or barrier to good work.
As a consumer worker, when I first start a new role, I get a flurry of mixed feelings. At first, I have hope that there will be real change and that true co-production of services with consumers is possible.
On the other hand, I also know that the pace at which I expect change can be ambitious, and that I need to bring people along on the journey.
Working within bureaucracies
Organisational readiness is crucial, so it is important that the organisation has time to ask questions and explore any uncertainty and fears they have. It needs to be a space where it is okay to not know the answers. We explore that together.
It is interesting to notice that when organisations do get to the point where they are ready for change, they then see possibilities they never saw in the beginning – in fact possibilities that they may have even actively stifled or snubbed in the beginning.
Equally, there is also a risk that consumer consultants aren’t prepared for the role and may be “captured” or “co-opted” by the service they are meant to improve.
When I started out my consumer consultant roles, I wasn’t ready to know and hear what my more seasoned colleagues had experienced as that didn’t resonate with me at first. The work I did in the initial days was at a very superficial level.
This meant there was no resistance from the organisations, so they were happy. When I was warned or heard of the experiences of others, I understood it intellectually, but wasn’t really internalising it.
Challenges for consumer consultants
Consumer perspective work is about doing things differently – that is why the roles were envisaged in the first place. Although this is the exciting bit, it is also one of the most challenging bits. Organisations often don’t like to change the status quo and certainly struggle to give up their power, that they may also have trouble recognising and naming.
The status quo and the use of power to maintain it often means it can be hard to raise issues and challenges. After years of work in this environment, I have some reflections on the challenges.
We can face significant compromises. Of course, these are part of any work, but because this work is so closely linked to our (often harmful) experiences, it is particularly hard. When resistance to change is high in an organisation, there are times that I may need to let go. But doing this can feel like I’m letting people down or like I am selling out.
These compromises leave us open to criticism both within the organisation and within our own consumer community. My belief is that for mental health systems to change, our consumer perspective work needs to be done in all settings and ways. At times, I have been asked how I can work in these bureaucracies. For me this is just one way to make change.
The work raises questions of allegiances. When any worker goes into an organisation, their allegiance and duties are to that workplace. However, as consumer consultants are about facilitating the voices of those who use the service, it poses the question: who are you working for and whose voice should be privileged?
Organisations are often risk averse on many levels. However, risk is often only understood from the perspective of the organisation, not from the perspective of those who use the service. This is often grounded in paternalism, and can be a real barrier to change.
The slow pace of change is its own barrier. If we want to make meaningful change in real-time, things to address are prioritising consumer-perspective work, giving it authority in the organisation, and having enough consumer workers to do the work.
We usually don’t lead the services or set the agenda in those services. Consumer perspectives on important decisions can be seen as competing or conflicting with existing agendas, but when consumer perspectives are made central to all priorities, organisations understand and embrace these perspectives as enhancing.
In most of my roles over 22 years, I have been the only person in a consumer-designated role. With the Royal Commission into Victoria’s Mental Health System expanding the consumer workforce, there needs to be ways to connect consumer workers to their colleagues and their ideas.
This is also important for maintaining values and authenticity to the work and to guard against co-option of the consumer workforce. Co-option can be for well-meaning reasons such as services wanting you to feel part of a team, but once absorbed fully into a team it is easy to lose sight of the reason the roles were first developed. Critical to counter isolation and co-option are proactive efforts to ensure people are linked to their own consumer perspective discipline and history.
I don’t represent consumers and I don’t want other consumers to represent me. One of my high horse rants often follows being asked to be a consumer ‘representative’ when others are asked onto committees for their expertise (see further p 3).
There is a place for getting a representative view, but there are many ethical and practical considerations. There are many questions, including (but not limited to) who am I representing, was I voted into this role, how would I get their views, what about marginalised views? These and many more questions must be understood and worked through.
Money is an issue. These are often low paid roles . As a consumer worker, you may not have your own budget for activities, and may have to compete with other hospital activities for consumer perspective work.
Working in dedicated consumer roles is a discipline in its own right, that needs recognition. In all workplaces there may be people with lived experience in addition to their other roles. While this can be valuable, it is quite different and cannot be substituted for dedicated roles where someone is specifically tasked with using their lived experience (for an example of these distinctions, see this Position Paper). It’s a difficult conversation that can be personal and divisive, but it is an important one.
It can be exhausting playing the role of the annoying voice. I don’t want to be the annoying voice, but there are so many issues to be raised. One manager said to me “I give you a perfectly good explanation about why we can’t do something, and you just come back at it another way!”
If I stopped at every “perfectly good explanation”, I wouldn’t be doing my job! The other alternative is to “roll over” and then feel like a failure, like you have let people down who don’t have a voice at the table.
Ultimately, this work is about human rights. It’s about the human rights of people who are treated differently and discriminated against because of who they are and because they are caught up in a mental health system that greatly impacts on freedoms and can often perpetuate trauma that has occurred in their lives – the trauma that quite likely landed them in the system in the first place. Human rights are too important to be lost in all the other activity and bustle that gets its way.
The things that would have helped me in guiding organisations
Having done this work for more than twenty-two years, I wish I had done things in a much more aware way. For instance, I didn’t know anything about “organisational readiness” – a way of looking at whether organisations are in the right place to understand and commit to change based on the consumer perspective.
With that in mind, here are some considerations – based on my experiences as a consumer consultant – for organisations looking to work with consumers:
- Learn: Learn about consumer perspective work so that you understand it and are ready for it. There can often be parallel processes in play where staff may feel powerless or feel that they cannot make a difference. Notice the power and acknowledge this as well. This all takes time and commitment, but the benefits are great. This work won’t flourish until the organisation is ready.
- Grow: The best way to get started is to sow the fertile soil. Start with things that create a win all around, no matter how small they may be. Start with the achievable things so confidence grows, and people feel safe to move forward.
- Reflect: Ask yourself – Is what we do as an organisation good enough for me and my family? If not, it is not good enough for any consumer, so support us to support you to find better ways. There is such valuable knowledge in first-hand experience. It can lead to practical and transformative ways to improve your service. That knowledge is unique to people who have used your services, but you need to ask.
Over the years, I have tried to model what I want to see. And I don’t get that right anywhere near as often as I would like. Would I do things differently if I had my time again? Absolutely. This is a lifelong journey and although head banging at times, this is the work I always want to do.
My dream – and this is a personal opinion – is that we no longer have mental health legislation that permits compulsory mental health treatment, and that services are what people want them to be.
Ultimately, I hope that the consumer voice becomes so centred that my role becomes redundant.
*Wanda Bennetts has worked in mental health consumer perspective roles for multiple organisations over twenty-two years. She currently works as a Senior Consumer Consultant for Independent Mental Health Advocacy, Victoria, but this article is written in her personal capacity.
For assistance:
Lifeline 13 11 14 www.lifeline.org.au
Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au
beyondblue 1300 224 636 www.beyondblue.org.au
13Yarn: 13 92 76 13yarn.org.au
Kids Helpline 1800 551 800 kidshelpline.com.au
QLife: 1800 184 527 https://qlife.org.au/
Check-In (VMIAC, Victoria): 1800 845 109 https://www.vmiac.org.au/check-in/
Lived Experience Telephone Line Service: 1800 013 755 https://www.linkstowellbeing.org.au/
Acknowledgements
The #SpeakingOurMinds series of articles was conceived and organised by mental health and human rights advocate Simon Katterl and is edited by Dr Ruth Armstrong.
It is published to coincide with Mental Health Week 2022 (October 8-15) as a vehicle to privilege the voices of lived experience.
Bookmark this link to follow the series.
The series is supported by Mental Health Carers Australia, Simon Katterl Consulting, Tandem, First Nations Co, and Mind Australia. The supporters respect the independence of the authors and the editors.
On Twitter, follow #SpeakingOurMinds.
