Imagine you walk into a restaurant and ask for the day’s special. Instead you’re served the same dish as everyone else. You try to speak out but you’re told it’s what everyone else gets, that it’s been taken by hundreds of customers before you. Explaining what you need to a business but being sold something that might not suit would be commonplace at cheap stalls in a tourist market. Yet some in the NSW health sector believe this scenario has been the norm for mental health consumers in a market where people can feel they have limited options. However there is a new consumer movement that is turning the tide.
Mental health is something that isn’t openly discussed in Australian culture. It is only when Mental Health Week in October comes around that hundreds of events are held across Australia to promote awareness of mental illness and mental health problems. According to the Australian Bureau of Statistics, one in five people aged 16-85 in Australia will be directly affected by mental ill health. In the last few years, there has been a push to use the term ‘consumers’ when referring to people with mental ill health who are seeking treatment. In the mental health context, it promotes the important role a person has in relation to the care they are receiving, as opposed to the term ‘patient’ that is sometimes considered to denote a more passive role.
Natalie Cutler, board member of the NSW Mental Health Association, says the term highlights the importance of the individuals in their own treatment. “If you’re a patient in a surgical ward, the doctors and nurses need to do things to you because you can’t do much to help yourself heal; they have to do things for you. But in a mental health context, the aim is to magnify the autonomy and self-directedness of the person. The use of the word consumer represents a more active role in the exchange of services.” Cutler has worked in the mental health industry for over 20 years. Her work in the public, private and voluntary health sectors have allowed her to work on a variety of projects designed to build new recovery principles for patients in acute mental health care. While she acknowledges its benefits, Cutler believes that this terminology is not without its faults. “The term consumer can be controversial, since the person is still defined according to their relationship with mental health services.”
The role of the consumer has been placed at the forefront of many new services sweeping across the state. In the Southern NSW Local Health District (LHD), consumer representatives have taken positive steps in the delivery and effectiveness of mental health services. In Queanbeyan, consumer consultant Sandra Morgan has worked tirelessly alongside the LHD and mental health consumers. She helped initiate the transfer of 20 patients from the psycho-geriatric ward at Kenmore Psychiatric Hospital in Goulburn to a community-based care environment. “Some patients who were transitioned back to the community had been there for up to 50 years,” says Morgan. “In the past some patients had lived out the years of their natural lives only to die in hospital. This is unacceptable. If a patient is admitted to a general hospital with a heart attack they are not kept there for years just in case they have one again!” After winning the 2015 ‘Mental Health Matters’ Community Champion Award, she remains humble but highly determined to improve the mental health system, as well as make a difference in consumer’s lives. “Many mental health consumers exist rather than live a quality life,” says Morgan. “I believe this is because most consumers live way below the poverty line. They are short of money for groceries, cannot afford heating even in -8oC winters and have health issues such as medication side effects including being too sedated to function properly or hold down a job. While all this may seem bleak it is reality for a lot of our consumers.”
Morgan’s lived experience with mental health and her passion for the mental health industry has been influential at the Queanbeyan and Yass Mental Health Service. Programs that she has worked on include networking groups between the consumer and management services as well as discussion and peer-support groups. These programs are designed for consumers to receive information, provide feedback to management and the opportunity to network with their peers and gain mutual support. For some of the consumers that access the service, they find it is a welcoming environment where they can feel a sense of belonging. However for others it is still a daunting and scary experience. “By far the biggest barrier to consumers and carers seeking professional mental health assistance is stigma,” says Morgan. “Even in this enlightened age people feel shame in admitting to being mentally ill. They experience great fear that others in society will think less of them, ostracise them and treat them differently. Also because of the horror stories of the past, they are frightened of what treatments they will receive when they seek help.”
Professor Jane Stein-Parbury, former director of the Mental Health Nursing Professional Unit, agrees that stigma can limit the influence of mental health consumers on the way they are treated. “For many years, their voices have been silenced due to stigma, public fears and keeping mental health consumers out of sight. In years past, a serious mental illness would literally rob a person of his or her life. They were told what to do, what they needed from the perspective of clinicians and often treated against their will.” However through a more streamlined approach that considers the consumer voice, mental health hospitals have been improved.
In June the Professor Marie Bashir Centre, a mental health centre in Camperdown, recorded 67 per cent of its consumers completing their collaborative care plans, which recently took on a new focus of self-empowerment rather than directing. In 2013, only five per cent of consumers had completed similar care plans. Opened in December 2014, the Centre is designed to look more like a home than a hospital with brightly coloured corridors, leisure spaces with screens projecting rainforests and rooftop gardens. Cutler says the recovery programs being implemented at the Centre show a step towards increasing the rights of the consumer. “The voices are being valued and acted upon. It’s less like an institutional setting, more comforting, less sterile. A more person-focused space can influence the power dynamic between the consumer and the people that are ‘in charge’. So anything that’s less hospital-like hopefully would diminish that sense of power and relationships of power.”
One of the biggest changes in the mental health sector has been the involvement of consumers as peer support workers. In NSW, the Personal Helpers & Mentors Program (PHaMS) is a service where the consumer’s recovery journey is a self-directed process. Karen Purtle, a peer support worker from Albury, has been involved with PHaMS for six years and says talking about her experiences of living with bipolar is inspiring for consumers. “We encourage them [consumers] to look at what their strengths are. From there, they develop their own action plan. As part of the PHaMS program, it’s essential that there is a person with lived experience [a peer support worker] involved who is prepared to share their experiences with other consumers. Sharing my own experiences has empowered participants to open up about their own experience. It has stimulated ideas about recovery and proved that it is possible.” Purtle, 60, has lived with bipolar for over 40 years and wasn’t formally diagnosed until 2001. She says consumers in the past rarely had programs like PHaMS on offer and that peer support programs are becoming an integral part of the mental health industry. “From my understanding, it wasn’t around 10 years ago. In my own journey when I was in hospital, I didn’t have the opportunity to participate with other consumers. Services prior to those like PHaMs overlooked the wisdom of consumers and carers. Not only were they ignorant of the contribution that could be made by consumers and carers, they actively did harm by not listening and not having structures that were inclusive.”
Cutler believes the mental health industry needs to embrace peer support workers if it wants to remain sustainable in the future. “There is an increasing momentum towards this concept of co-production which is combining the lived experience expertise of people who have lived with mental illness with the expertise of trained and qualified mental health professionals. If we work together we can build services that are much more oriented towards the needs of the people rather than the needs of the systems that offer services for those people.” The health professionals and institutions no longer autonomously control mental health care. Professor Stein-Parbury says that the current movement towards differentiating clinical recovery from personal recovery has given power back to the consumers. “Personal recovery is aimed at the consumer leading the life that they desire. For too many years, clinicians defined what is meant by recovery. The consumer-led recovery movement requires that they define the meaning of their life. Consumers are leading the recovery movement in mental health and this is a positive step in re-framing the way mental illness is constructed.”