Mental Health Lived Experience Workers Co-Op
An initiative is underway to establish a worker owned and operated cooperative in Australia for mental health services
While still in the formative stage, it is envisaged that suitably trained Lived Experience mental health Workers (LEW’s) will deliver a range of affordable online mental health services. LEWs are also known as Peer Workers.
The co-op will be established as a private enterprise without any government funding, assistance or subsidies. Services available will be affordable even to low income earners including those on unemployment benefits.
According to the World Health Organisation (WHO) “Many mental health conditions can be effectively treated at relatively low cost, yet health systems remain significantly under-resourced and treatment gaps are wide all over the world. Mental health care is often poor in quality when delivered. People with mental health conditions often also experience stigma, discrimination and human rights violations”
The long term inability of both state and federal governments to provide quality mental health services at low cost leaves a big gap that a LEW worker co-operative can potentially fill.
The services offered however will not be the normal main stream ones but rather based on what has become known as the Wellness mental health model.
The Wellness Model
This approach has been used successfully around the world by various organisations including Diabasis, I-Ward, Soteria, Open Dialogue, Hearing Voices Network and others. In particular the services offered by the Open Dialogue approach look very favourable.
Open Dialogue is a mental health crisis management method that emphasises collaborative, holistic care, with a focus on involving clients, their families, and social networks in the treatment planning process. It originated in Finland in the 1980s and is particularly known for its success in addressing psychosis and acute mental health crises. The approach seeks to create a non-hierarchical environment where everyone is listened to, ideas and opinions are valued, and solutions are co-created.
This is a very different situation to the main stream biomedical approach. Distressed clients, particularly those experiencing psychosis or extremes states frequently complain that they are not listened to by mental health professionals. There are also frequent complaints about unwanted treatment, particularly around the use of medication.
From the professional’s point of view, there is often a belief that there is little point in listening to a person in acute crisis because what they say doesn’t make sense.
What many professionals fail to realise is that a person in this state may be desperately trying to communicate some deep subconscious emotional impressions that can only be expressed metaphorically.
By ignoring this information, a valuable and sometimes irretrievable healing opportunity is often lost.
Crisis facilitation
One of the numerous services that the LEW co-operative will be able to provide is Open Dialogue style crisis facilitation.
Within 24 hours of a crisis call, an online teleconference meeting of the clients personal network would be organised. This personal network typically includes family members, friends, and anyone else the client wants involved. The network meeting would normally include two trained LEW facilitators who work with the client and their family throughout the entire treatment period to evolve a unique personal treatment plan while at the same time building trust and understanding.
These meetings focus on open, transparent conversations where everyone, including the client, can express their thoughts and emotions without judgement or pre-determined agenda.
The Open Dialogue approach encourages everyone to take time to reflect and consider options rather than rushing into a quick diagnosis or solution. The resulting treatment plan is one that the client and their personal support network feel to be most helpful. This treatment plan can of course be modified if and as required throughout the course of the treatment and may or may not include the services of experts like psychiatrists, psychologists or the use of various treatments such as medication etc.
LEW’s are of course able to contribute not only facilitation skills from their formal training but also practical knowledge from their own lived experience as well as compassion and understanding.
Benefits
There are many benefits to this approach. It has been shown to lead to fewer hospitalisations, less reliance on medication and significantly improved long-term recovery prospects. Clients and their family support networks who are actively involved in decision-making also gain a sense of control and empowerment.
Open Dialogue is employed in a number of countries including Finland where it originated from. it is also used in Norway, Denmark, Germany and more. In Australia it is still in its early stages of adoption, with a number of mental health organisations and practitioners looking at it and advocating for its use.
Problem’s
Lived experience mental health workers often face a number of challenges when working in mainstream mental health systems. While their lived experience is invaluable for helping clients to understand both the recovery process as well as the pros and cons of various service offerings, they often face scepticism or even hostility from clinical staff who are trained in the mainstream system.
Such staff may regard the expertise of those with formal academic or medical training as more important than that of LEW’s leading to feelings that their role is included as a token gesture toward recovery-oriented care, without real commitment to integrating their insights and experience.
LEW’s are often underpaid . In some cases they are not paid at all. They may have little or no job security and be required to work in roles carrying out onerous tasks where boundaries are often blurred,
Many mainstream mental health facilities are resistant to change. This can easily lead to frustration and disillusionment for those who see change as essential.
LEW owned and operated workers cooperatives have the potential to cut through these sorts of problems by putting them in the drivers seat. They need only focus on providing excellent services at fair and reasonable rates. Market forces in time will take care of the rest.
You get what you pay for
Many will feel that these sorts of services should be provided for free by the government. Maybe they are right but the reality is at this point in time, you get what you pay for.
A number of Australian enquiries and royal commissions have found that a lot of government run mental health services are “not fit for purpose“. Furthermore, despite the political rhetoric, there seems to be very little incentive or motivation for change.
The aim of the Australian LEW mental health workers operative is to provide effective, low cost mental health services that the World Health Organisation claim is possible but is seldom available.
What Clients Say
Here is what some people in the UK have said about using a Peer-supported Open Dialogue service
Jane, middle-aged woman
I was given a mental health diagnosis thirty one years ago.
Last year Open Dialogue became part of my recovery.
My Open Dialogue meetings are my meetings. In my meetings I’m safe, respected, heard and cared
for. The facilitators are gentle and I talk without feeling challenged. I can talk about what I feel I
would like to talk about. Anything. OD has enhanced my relationship with my brother because he is
part of the meetings. Through my OD meetings psychological therapy was identified as a possible
part of my recovery. I’m now involved in this therapy. I’m not sure if this path would have been
opened if I hadn’t been fortunate to have OD in my recovery.
Everyone that has Open Dialogue in their lives will have some sort of journey.
John, middle-aged man
I am unsure where the dialogue is going, or if it will go anywhere in particular. All I know is that I
feel supported for the first time in my life with the Open Dialogue method, and with the team. It is
such a distinctly different approach, where even though I have these issues, I have the opportunity
to sit with people rather than alone, and talk about how I am trying to process and self-manage my
day-to-day life.
Parent and daughter
Our enthusiasm as a family for open dialogue has grown over many months under very trying
circumstances, such as both my twenty year old daughter and myself, being at separate periods
hospitalised for months on compulsory orders and my husband as one stage needing
temporary respite care.
Mental breakdowns resulting in hospitalisation are the most disorientating experiences that I have
ever known. Add medication to the mix and it feels as though you can never catch up with
normality or synchronise with people around you.
We feel that open dialogue has really worked well for our family because it has given us time,
patience and sensitivity in order to recognise, alleviate and communicate what are often invisible or
hard to get at difficulties surrounding mental illness. Psychosis can be terrifying; not necessarily
during psychotic episodes but also leading up to becoming unwell. Recalling to yourself or giving
explanation to others when normality seems to have resumed, you can feel bewildered, ashamed,
and paranoid and the expectation of being rejected as though you have done something
reproachable even though you have not.
Open dialogue has allowed us to experience a safer, kinder and more transparent setting to discuss
with friends and professionals what our true problems are. These talks, we believe, have broadened
our understanding, reduced paranoia and stigma, giving us greater hope and stability than we would
otherwise have had.
More Information
If you would like to be added to the Mental Health Lived Experience Workers Co-Op mailing list, please use the Contact Us button to send us a message to that effect.
Acacia Mental Health (Co-Op Pending) is a temporary public online home using the Meetup app. Here is the link to it
Download The Current Business Plan here
Articles of interest
Here are some articles that could be of interest. It is likely that we will discuss some of these topics at future meetings. In the meantime it is important to realise that we are not experts trying to tell people what they should or shouldn’t do. We are people who have had our own share of difficult experiences who are now trying to help and support others to find their way forward, often in new or uncharted territory.
The Co-Opting Of The Peer Movement in Mental Health -Mad In America
Summary of Peer Supported Open Dialogue Principles
Peer Support and shared decision making in Open Dialogue
Peer Supported Open Dialogue (POD)
What people say about Peer-supported Open Dialogue (POD)