The Royal Commission’s Interim Report: A service designed and delivered by people with lived experience – Recommendation 5
The Royal Commission recommends that the Victorian Government establishes Victoria’s first residential mental health service designed and delivered by people with lived experience. This should be facilitated through the Mental Health Implementation Office in co-production with people with lived experience.
This service should provide short-term treatment, care and support in a residential community setting as an alternative to acute hospital-based care, and be:
- delivered and operationally managed by a workforce comprising a majority of people with lived experience, working across a range of disciplines
- facilitated through a partnership between an area mental health service and a mental health community support service or a community health service
- independently evaluated, with findings to inform continuous improvement and guide the expansion of similar services.
The first of its kind in Victoria – a residential mental health service designed and delivered by people with lived experience, will be a game-changer for consumers. For far too long, the system that seeks to support us in our most vulnerable times has been propped up by policies and practices that do not understand or meet our needs and wants.
A service, one designed and delivered by those with lived experience of mental health issues, is a chance to rectify this – an opportunity for consumers to create a mental health response that is based on compassion, trust and connection rather than old ways of working that maintain the power imbalances of the current clinical system.
This recommendation received strong support from the consumer community, with all participants in our Royal Commission consultations and surveys in favour of the idea. Consumers suggested the key factors to be considered in the implementation of this service are:
- A homelike environment
- Responding to the individual (one size does not fit all)
- Diversity in the care provided
- Lived experience workforce
While there was a demonstrated need for good linkage to other mental health supports, participants stated a preference for the peer led service to be self- referred, without access being determined by participation in any other specific program or service. Consumers also suggested that individuals should be able to choose the duration of their stay.
There was also a clear indication that the service must be made available to all consumers rather than those with a specific diagnosis, focusing on the support needs of the individual rather clinical presentation. Workshop participants also said attention needs to be paid to diversity, stating that consumers from ATSI, CALD, and LGBTIQ+ communities as well as those with dual disabilities need to feel that the service is safe, supportive and free from discrimination.
There was agreement that proposed services should be located close to public transport, amenities and support structures such as shopping centres, health services and volunteering opportunities, to provide access to services in a central location.
A homelike environment
There was consensus that this peer led service will reflect a home-like environment with three widely agreed upon requirements: private rooms and safe communal spaces, minimal guests (between five and ten at any given time), and outdoor and green spaces.
One consumer described their ideal service as a “large suburban home”, another summarised the feeling of this service as “welcoming, warm, de-institutionalised, homely and safe”.
Generally, there was an emphasis on non-clinical design and physical comfort and calming and inviting spaces.
Below is a snapshot of the responses to the question “What should the service look like?”:
“a calming, safe environment, bean bags, blankets, no white walls, calming colours, no clinical feel”.
“A sense of peace and safety, nurturing and comfort. Lots of green gardens and indoor plants. Walls painted with natural colours like green and blue, warm orange like a sunset or yellow of a sunny morning. Lots of pillows and comfortable spaces to interact in comfort and safety.”
“What I would love to see is just a normal house, in different locations throughout Victoria. They could be in the mountains, near the beach, in the countryside, in the city. Maybe you live in the country and you’re sick of the cows and the paddocks so you want a complete change in environment; you could have a break in the city.”
Further responses from the survey on how the service will look, highlight the calming and inviting space this service needs to be:
“Relaxing colours, lots of access to outside gardens, all rooms with views of the garden.”
“Should look and feel like the kid’s oncology ward at the children’s hospital. A sense of peace and safety, nurturing and comfort. Lots of green gardens and indoor plants. Walls painted with natural colours like green and blue, warm orange like a sunset or yellow of a sunny morning. Lots of pillows and comfortable spaces to interact in comfort and safety. Activities to calm and soothing like mindful colouring or sensory activities. Safe and breakout spaces for quiet and safe solitude.”
“An outdoor garden, everyone has their own bedroom and bathroom, a communal lounge room for TV watching/video games, a quiet space for time out, a music room and an art room. The space could be decorated with positive messages from previous consumers about their time using the service.”
“Homely. Access to outdoors, kitchen/laundry. Quiet spaces and communal space for meetings. Access to arts, gardening, dance- so space where people can choose to participate or chill quietly.”
It was also important for workshop participants that this service will allow ‘guests’ so that consumers will be able to maintain their regular routines as much as possible, helping to ensure a smooth transition out of the service.
In a follow-up survey VMIAC asked consumers to think about the following question.
You told us that this service will be in a homelike setting with peaceful, garden spaces, designed to support a diverse range of experiences and accessible when you need.
When you can access the above service, how will this make you feel?
Seventy-nine percent of consumers responding to this question felt positive about accessing the service.
There were some consumers who questioned whether there would be enough of this type of service to support everyone. For instance, one respondent stated they would feel:
“Heard, cared for, but seems unrealistic as the needs outweigh the beds, and will it be accessible to all areas?”
Here are some further responses from consumers about how they will feel when this service is supporting them:
“I will feel really good and, I hope, at home in an environment that not only supports but also facilitates my, and everybody else’s, on-going battles, as well as successes with mental health journeys.”
“Like I’m at home and not in a sterile hospital environment. When suitable my friends and family will be able to come to see me and show their support. There will be less paperwork to fill in and fewer ‘interviews’ to gather information. It will have a warmth and safeness that will allow people to open up and not feel exposed (less vulnerable).”
“when they leave the service, they have a peer worker embedded in the community case management system who can help them.”
“Less stigmatised, more understood, better supported and connected”
Responding to individual (one size does not fit all)
Participants in the workshops acknowledged the differing mental health complexities amongst consumers and the need for customisable care. It was important to consumers that the services cater not only to differing mental health disorders but also to other forms of diversity e.g. separate services for young people, adults, and gender identity (“common needs… grouped together”). Furthermore, participants were concerned that all services ensure they are culturally sensitive.
Similar to the feedback given in the workshops, survey respondents also desire consumers to have more ‘agency’ in accessing the service and their treatment decisions. One consumer spoke of the need for “people taking their lead from me.”
According to respondents, in the ideal lived experience led service, consumers will have a service that is welcoming and will be able to receive support when they need, not just when they reach a crisis:
“There would be a cafe and drop-in associated with the service as well as spaces just for the residents, so that people always knew there was somewhere safe to go”.
Diversity in the care provided
Consumers said holistic care is necessary in a peer led service, suggesting that the services offered need to go beyond the realm of the mental health space. As well as activities that address health and wellbeing needs such as art therapy, music therapy, yoga, meditation and gym access, consumers suggested that recreational activities be embedded into the model of care (outings, craft groups and movie nights). For one participant, holistic care means communication and an intersectional approach:
“If I could have had my massage therapist collaborate with mental health professionals about the impact of my chronic physical pain on the state of my mind. If I could have had my autism consultant collaborate with mental health services to educate them on the difference between autistic traits and psychotic features.”
The service should be also set up in a way that promotes healthy living and personal growth, with participants suggesting:
“Large group rooms, exercise areas, kitchen areas for healthy eating education, smaller rooms for individual peer support, outside spaces for physical activity and reflection”.
“Education to understand self with greater to focus on living and enabling one to look after them and other”.
In addition, participants stated that there should be access to additional services that may help alleviate worries associated with their “normal lives”, common suggestions include: pet boarding, childcare, dentists and GPs.
Lived Experience Workers
For this service to be successful it will be staffed by people with lived experience and include a wide range of specialists, with limited involvement of psychiatrists who are involved by invitation only.
“Lived experience workers will make up the majority of staff and receive ongoing training and supervision.”
For example, one consumer described the peer service like this:
“Peer workers would run groups for the current consumers including: Grow groups, life skills groups, groups to share feelings and groups to learn coping skills. Peer workers who have a lot of experience, training and stable mental health would work in managerial positions and clinical staff would be accountable to the peer workers.”
Community outreach by peer workers was also an important aspect that participants want considered, asking whether the service could provide supports for consumers who were re-entering daily life in order to reduce return visits and manage the waitlist.
These responses show that the peer led service will have considerable support.
There was an assumption that the management and governance of this peer run service would be by people with lived experience of mental distress. There was a strong desire to believe that it is possible to have such a service and that it would truly be run by consumers with lived experience and not be tokenistic.
The sense that this could really be possible left consumers with a sense of exhilaration tinged by a little cynicism. The need for such a service run totally by consumers will require support and training particularly in the management and governance areas.