PERSON-CENTRED AND CONSUMER DIRECTED MENTAL

HEALTH CARE: TRANSFORMING CARE EXPERIENCES

Produced for the National Mental Health Commission by the Mental

Health and Suicide Prevention Research and Education Group,

University of South Australia.

January 2023

Acknowledgement of Country

We acknowledge the Traditional Custodians of Country across Australia. We respect and value their

wisdom generates. We value the courage and leadership of people sharing lived experience

perspectives.

1

Acknowledgments

We would like to acknowledge the contribution and involvement of project participants throughout the

consultation and codesign phases of the project. Thank you for sharing your experience, wisdom and

perspectives on person-centred and consumer directed care, and talking together on how we can

improve, reform or create services that meet the true aims of these principles and practices.

Thanks, and appreciation to Adele Liddle for her creativity and care in guiding the project through the

codesign design stages. We also appreciate the wonderful work of Mahlie Jewel at Living Arts and

thank her for providing colour, style and design options for this report.

Dr Joshua McDonough, Project Manager

Ms Kirsty Baker, Dr Monika Ferguson, Dr Davi Macedo, Prof Lois McKellar and Dr Kate Rhodes – Co

Investigators

Suggested citation

Loughhead M, McDonough J, Baker K, Rhodes K, Macedo D, Ferguson M, McKellar L and Procter, N,

Person-centred and Consumer Directed Mental Health Care: Transforming Care Experiences, prepared

for the National Mental Health Commission, University of South Australia; 2023.

https://doi.org/10.25954/jkqx-ay14

Glossary

Executive summary .............................................................................................................................................. 1

Section 1 Context and Background .................................................................................................................... 5

1.1 Aims of the Spotlight report project .............................................................................................................. 5

1.2 Who is this report for? .................................................................................................................................. 6

1.3 Outline of the report ..................................................................................................................................... 6

1.4 Person-centred care .................................................................................................................................... 6

1.5 Consumer directed care .............................................................................................................................. 8

1.6 Consumer and carer experience and preferences ..................................................................................... 10

Section 2 Methodology for consultation and codesign ................................................................................... 13

3.1 Concepts of person-centred care and consumer directed care ................................................................. 16

3.2 Different concepts and different service contexts ...................................................................................... 18

3.3 Experiences of person-centred care and consumer directed care ............................................................ 20

3.3.1 Knowledge power and decision making ............................................................................................. 22

3.3.2 Service and systems design ............................................................................................................... 24

3.3.3 Risk and consumer autonomy ............................................................................................................ 27

3.3.4 Service skills and capacities ............................................................................................................... 29

3.3.5 Recognition, awareness and diversity ................................................................................................ 32

3.4 Summary of section 3 ................................................................................................................................ 33

Section 4: Creating shifts toward person-centred and consumer directed care .......................................... 34

4.1 Developing the Shifts ................................................................................................................................. 34

4.2 Shift 1: Strengthen practitioner education and training on essential knowledge and skills ........................ 37

4.3 Shift 2: Embed supported decision-making practices within mental health legislation .............................. 39

4.4 Shift 3: Create a national program for strengthening leadership ............................................................... 40

4.5 Shift 4: Strengthen lived experience leadership ......................................................................................... 43

4.6 Shift 5: Develop a focus on ‘relational recovery’. ....................................................................................... 44

4.7 Shift 6: Promote and fund crisis response models ..................................................................................... 46

4.8 Shift 7: Fund lived experience organisations to co-design local mental health programs .......................... 48

4.9 Shift 8: Fund lived experience organisations to provide peer navigation services ..................................... 50

enable empowerment and reduce stigma. Language used in mental health can often vary, and below

we have identified which terms we have used in the report, as well as defining some of the key

concepts discussed.

Codesign

An approach to designing, planning, and evaluating services, and

outcomes in which consumers, carers, and health professionals work as

concept of PCC has been included in considerations of human rights to health care as facilitating safe

PCC is about providing services and support that pay close attention to individuals’ unique needs,

effective for each person. Consumers are viewed holistically, meaning their physical, emotional, social

responsive to—individual preferences, needs and values. Specifically, PCC considers the individual in

the centre of decision making, and is often guided by Picker’s Principles of PCC:

6

PCC principles have been introduced and developed across the wider public health system via the

development of National Safety and Quality Heath Service (NSQHS) Standards.

7

There are eight

standards which set expectations about the way services are organised and delivered to people using

health services such as public hospitals and community health services. Six of the standards are

especially relevant for mental health services and encouraging person-centred mental health care.

These are:

be involved in governance committees, feedback and complaints management and consumer

centred leadership.

the broader health care needs/responses. Also minimising harms and using a trauma-informed

approach.

handovers or other times such as discharge, moving to another unit.

deteriorating mental health and require increasing level of supports.

Many within the mental health sector regard the NSQHS as a key framework guiding person-centred

health care in Australia, as all public health services are formally accredited using these standards. It is

important to acknowledge that limits to PCC and decision making may occur due to mental health

legislation, and the use of treatment orders or other restrictions on consumer autonomy and decision

making.

Definitions and principles

CDC aims to give individuals greater decision-making capabilities over the care they receive, including

Mostly, CDC programs are what is labelled a ‘cash-for-care’ scheme, where individuals are provided

no longer want. CDC utilises budgeting and marketisation concepts to drive the quality and quantity of

CDC in the Australian mental health settings mostly occurs via people using the National Disability

Insurance Scheme (NDIS) for psychosocial disability. The scheme is directly designed following CDC

principles and was developed to help people with a wide range of disability needs, and later included

mental health and psychosocial disability. Consumers approved for an NDIS plan by the National

Disability Insurance Agency (NDIA) can use their designated budget to buy in services they prefer.

There is opportunity for consumers to develop their plan with the NDIS, and then look for services that

can be useful for meeting daily needs or areas of growth and learning.

NDIS funding includes itemised services such as support workers, recreation, therapists and recovery

providers have become active. Larger organisations have also adjusted their workforces to offering

organisations. These services have a strong commitment to support consumers to find and receive the

documented and evidence is generated. Current research on outcomes includes the aged care sector

personalised medicine from the USA which are similar programs in principles and approach.

In the aged care literature, commonly reported outcomes and benefits from CDC include increased

in the timing of care services, a broader range of life needs met, fewer unmet needs and improved

limited. However, it does acknowledge the promise of CDC based programs from improving control of

extensive issues with implementation, accessibility of NDIS and the difficult connection with the NDIS

and recovery perspectives.

More broadly, there are some studies reporting on the benefits of CDC type service models. A study

from the USA reported that consumers in a self-directed care program reported improved levels of self-

rated recovery, self-esteem, autonomy support, coping, employment and education compared to

participants in the control group. They also had higher rates of satisfaction with services.

Another

USA study found that consumers were better able to draw on a wider range of support services under

to engagement in life activities, transportation services, ways of working through stresses and services

care – suggesting improvements in social relationships and connection come from accessing non-

costs associated with unmet needs, including hospitalisation, homelessness, residential care and

that improvements are required in the availability of carer supports, inclusion of carers in care planning

of Health and Welfare publish some aspects of annual data results and some states (NSW, QLD, and

caution given differences across states in the number of surveys completed and diverse methods for

young person is from a refugee background, is same sex attracted, is homeless from family conflict and

layers of identity that are part of the persons context, and hence recovery journey.

as we often focus on the needs and service interests of one identity group at a time, masking

process. 20 organisations were able to connect with the project and contribute. Potential participants

were sent a letter of invitation via email with information about the purpose of the consultation process.

Those who did not respond to invitations were sent a follow-up email, and where possible, a phone call.

Consultations for this project were conducted with consumers, carers, providers and peak bodies from

across Australia. There were nine focus groups and 15 individual interviews completed, with 50 people

participating in the consultation process. Participants represented the following groups:

A feature of this work was participants being able to provide practitioner and lived-experience

perspectives in the consultation process. This allowed stakeholders to collectively contribute different

Consultations ran between 30 and 150 minutes, depending on the number of participants. All

consultations were conducted over video conference due to the COVID-19 pandemic restrictions.

During consultations, we aimed to understand:

of the research group, while another took detailed notes of the participant responses. Key phrases and

quotes were recorded where points were emphasised by participants, rather than transcribing each

consultation verbatim.

which produced positive outcomes. Sub-codes were then generated based on the data (see Appendix

4). Initially, notes were separated into lived experience groups and practitioners and policy makers to

identify what aspects were similar and different between the two groups.

2.4 Role of literature

After notes from the consultations were analysed, the project undertook a co-design process with 20

participants. 10 participants were invited from previous consultation networks, while 10 new participants

were recruited, due to unavailability or limited capacity of earlier participants. The purpose of the co-

design sessions was to guide thinking on barriers and possible shifts of practice and services to

facilitate more consistent experiences of PCC and CDC. The outcome was the direction of the shifts

described in the report, as well as key considerations about context, outcomes and good practice

examples.

the language and concepts of PCC and CDC. The facilitator and author team recognised the diverse

participant’s understanding of PCC and CDC principles and outcomes; 2) participant’s views of PCC

and CDC within mental health services; 3) participant’s experiences of challenges, issues and barriers

in implementing PCC and CDC. The findings were generated by thematic analysis of participant

interview transcripts, which identified the most significant and prevalent themes across 24 consultation

interviews. Relevance of themes to the current literature are integrated throughout, and issues that

need consideration outlined last.

3.1 Concepts of person-centred care and consumer directed care

One of the aims of the project was to identify how participants understand the concepts of PCC and

CDC, and the connection to desired outcomes. From the analysis of consultation notes, the authors

identified key themes for both concepts. Themes were then discussed within the co-design process

consumer driven and therefore more orientated towards services provided through arrangements that

maximise consumer choice and control (e.g., NDIS services). Table 3 provides a summary of the

different themes within each concept.

Key themes defining PCC in mental health were focused on a holistic view of health and autonomy for

individuals. PCC takes a holistic view of health, recognising people in their social context, and seeing

their interests, preferences, strengths and relationships. In most circumstances, this perspective is

extended to include consumers, carers, kin and/or support people in health care decision making and

planning. Successful outcomes are measured by what works for consumers, carers, families and

practitioners. Recognising autonomy enables consumers to have power and agency to make decisions

about their own care, integrating health literacy, learning and informed consent as important consumer

This was a theme raised mainly by lived experience leaders and peer practitioners. This was a critique

diagnostic models overshadow lived expertise and different viewpoints about a person’s own health

person’s expressed wishes/interests. Peers reported that aspects of personhood are often lost when

shared decision making, disability rights and recovery-orientated care. Our observations are that there

are overlapping approaches and paradigms coming from each of these areas which shape the

achievement of PCC and CDC and offer a critique of the medical model. These result in diverse

expectations about how decisions are made, and what expertise is valued and influential in guiding

care.

PCC requires a genuine partnership approach of valuing professional knowledge as well as the

consumer’s preferences, values and wishes about treatment. This recognises that lived experience

process.

9, 12

An older, custodial model of care relationships runs contrary to this approach.

33, 34

Potential conflicts between professional and lived experience perspectives are recognised in the

interests’ model of substituted decision making, and an ‘expressed wishes’ model of the disability rights

life decisions and working together on this basis.

by the consumer and family.

Australia’s National Framework for Recovery Orientated Mental Health

recovery.

3.3.2 Service and systems design

3. Lack of service flexibility

creativity, problem solving and nearly always flexibility. This could be flexibility in accessing only

medicines to use, flexibility in having CTOs reviewed at different points of time based on changes to a

person’s circumstances, or flexibility in using a consumers mental health advanced care directives to

base treatment planning on the persons recorded wishes. It could be flexibility in choosing preferred

practitioners or requesting changes.

4. Funding and service parameters that limit program design

flexible, innovative and uncertain ways, depending on the directions established in the consumers own

A further aspect raised by advisors working in the NDIS space, was that funding programs often have

directed support. Personal and relational recovery reflects both small and long-term change, growth,

The key elements of this theme are gaps, barriers and absences of effective pathways of support for

people experiencing comorbidities, and a range of psychological and social issues. This might be for

people experiencing crisis who are homeless, on low incomes, have complex trauma, are estranged

from family, or a part of child protection or criminal justice systems. Other scenarios could include

drug and alcohol use issues, or cultural identity conflicts.

Addressing the issue of limited pathways is about developing pathways within local health network

specialist knowledge and connection to the issues and communities. They need to reflect collaboration

underpinning collaborative pathways needs to be social, psycho, bio and lived experience. This enables

6. Lack of information about services

Consumer, carer and practitioners speaking about psychosocial supports stated that CDC depends on

as a central challenge. This is further complicated by the large volume of services and programs that

can be available, given the growth of providers under NDIS funding, and how consumers, carers and

practitioners can access and keep up with information needs. Some participants pointed out that

to know about the quality and quantity of service, so they make good quality referrals and build

Commentary on themes and literature relating to service and systems design

In exploring these themes, the team noted that issues raised by participants are recognised and

which reduce flexibility and maintain barriers to PCC.

indicate that a range of personal, program and market barriers limit choice and flexibility for consumers.

Program barriers include NDIS lack of information about choice, communication and meeting processes

that undermine choice and the limits of plans themselves. Market barriers include the quality of

available programs and ability of providers to facilitate and honour choices.

about accessibility to diverse services within organisations and across the sector, and is an important

aspect of health equity.

program level and how a range of personal, psychological and social outcomes are defined by

planners indicating the need for local level planning, interpretation and co-design of outcomes.

There is also complexity in defining recovery outcomes and includes social participation changes (e.g.,

feelings of agency and valued identity). Recovery also has process outcomes about the journey and

The CDC theme about providing a range of service options is also important when considering how

recognised in the trauma-informed care literature where consumers, including young people, are

43, 44

for larger health organisations is how well practitioner teams can recognise the diverse needs of the

essential for providing all-inclusive care. Successful care requires successful interprofessional

required across services and systems,

which often include mental health, drug and alcohol,

homelessness services, income support, disability and family welfare supports.

The final theme about service information is a key aspect of how services are designed and accessible

key challenge for consumer groups, carers and service providers to keep up to date with information on

service, care and treatment information is essential for empowering consumer and carer decision

when supporting people with complex needs and working from a recovery perspective on healing from

trauma. Effective service and systems information is essential for care coordination and helping people

to navigate and make the best use of services.

7. Mental health laws and experiences of coercion

There were a range of views about the negative and positive impacts of treatment orders. Some

consumers and clinicians said that having clinically directed care is sometimes necessary and a good

responsible autonomy and supported decision making, and that any restrictive orders need to be

8. Too much focus on risk

Some consumer advisors reported that crisis encounters are too focused on risk assessment, including

suicide risk assessment, which for them at times emphasises the latent power of mental health orders

to limit consumer autonomy and safety preferences for comfort and support surrounding wellbeing and

distress. This theme reflected the different perspectives on responding to risk. There are various sides,

to prevent unwanted interventions, confinement and loss of control. They also can feel extra levels of

information sharing. A critical issue is that risk assessment and support is largely dependent upon on

while those restrictive interventions can manifest and sometimes be repeated in a one sided and

to disclose deeply personal information for help seeking or response to help offering. Some advisors

person-centred ways

These themes go to the heart of why PCC and CDC need to be reinterpreted from a mental health

mental health for people who are considered to be at risk of self-harm, harming others, or who need

differently between practitioner perspectives and lived experience perspectives. And we also

including iatrogenic harms and trauma that are not always recognised.

The literature reports that consumers, who are admitted to inpatient care, can experience coercion

communication on consent, inadequate follow up on mental health advanced directives, and poor

are contrary to authentic PCC, informed consent and recovery.

based treatment and worry about the threat of rehospitalisation. Recovery committed practitioners can

Our analysis identifies the tensions between recognising and supporting consumer autonomy and

sense of safety and statutory responsibilities to manage a person’s risk. Complex ethical dilemmas are

well documented in terms of working through conflicts between risk management and self-

determination for people experiencing suicidal crisis and in providing choice on medicines versus

clinical evidence of effectiveness.

Practitioners wanting to facilitate recovery and positive risk taking in

therapeutic work with consumers can face limits from embedded risk averse workplace culture which

leads to set conditions for consumers to decide within. Practitioners can also face lack of strategic

guidance from organisational policy as well as limited local practice support to work through dilemmas

encouraged to work through complexities with consumers, and learn ways of identifying risk negotiation

dignity of risk approach.

The above issues of risk are complex and highlight various unintended impacts of mental health

important need for the sector to discuss these challenges and differences in perspective, and work

3.3.4 Service skills and capacities

PCC and CDC included high-quality interpersonal communication and support skills, ways of including

decision making with consumers over time. Practitioner skills depend on familiarity and skills in using

This theme was broad and related to focused development of PCC across organisational culture and

into one-to-one care levels and within governance and service planning. Consumers and carers

covered across these themes), but highlighted inconsistent implementation and not knowing whether

well. Clinical leaders highlighted that the public health system struggles to have the systems, resources

responsive services for people going through complex mental health experiences. The need for

processes, often constrained their ability to spend time to build therapeutic relationships and facilitate

person-centred planning, decision making and follow up. Time resources to attend to requirements, or

guidelines for shaping decisions (e.g., a requirement for a referral to elicit a diagnosis that is not

families. Consumers and carers highlighted a related issue. The fast-paced nature of service life and

and resourcing which aligned all staff practices within a framework of either PCC or CDC, depending on

the context. How practitioners are supported through education, organisational supports and leadership

is central.

Essential skills for interpersonal communication are appropriate, along with supportive information

sharing, listening skills, validation, therapeutic relationships and supporting consumer and family

involvement. Practitioners working in youth mental health settings in particular need specialist skills for

supporting young people in care to have a voice while working within the family context. Training

flexibility in tailoring services is a key need

implementing PCC and understanding outcomes in the persons lived context.

analysis, more careful service planning and delivery, and better accountability and transparency

8

emphasise service led outcomes and meeting KPIs. Organisational planning for improved PCC should

ritualised, task orientated processes, such as care planning, need to be a quality experience for

practitioners to build high morale as both an outcome and driver of effective PCC partnerships.

8

The

undermine genuine relationships of care and practitioner fulfilment.

8

In terms of health practitioner job satisfaction, burnout and the connection with PCC implementation,

studies report positive associations between improved job satisfaction and PCC organisational

environments.

However there are mixed results on whether PCC health environments are associated

with less burnout among staff.

3.3.5 Recognition, awareness and diversity

12. Stigma and stereotyping about consumers

attitudes of staff, as well as assumptions that consumers have limited ability to shape decisions about

to personal identity or culture. The main experience we heard was from LGBTIQA+ advocates sharing

experiences on behalf of trans people experiencing ignorance, misgendering, or unsafe attitudes

across health care encounters. Advocates indicated that trans and gender diverse consumers cannot

predict that their next mental health care encounter would be via an informed, supportive and inclusive

practitioner.

hold specific knowledge, expertise and working relationships with diverse community groups, or can

access to high incomes and private sector health care which can be more flexible, responsive and

consumer and carer led education in PCC and CDC. These methods show effective outcomes

for reducing stigmatising attitudes and encouraging inclusion in care decision making.

4.3 Shift 2: Embed supported decision-making practices including

mental health advanced care directives and ‘nominated’ support

people, as well as other ways of recognising autonomy within

participants that Mental Health Acts need improved ways of recognising human rights for people with

disability and existing practices of substituted decision making can undermine personal autonomy.

Strengthening a rights-based approach, through supported decision making, also promotes better

recognition of mental health and planning, which express consumer wishes and preferences.

Supported decision making is a broad approach to empowering people living with disability to make life

decisions in a way where decision making supports are put in place. The philosophical approach, as

well as practices of advanced directives and consumer nominated decision makers align well with PCC

and CDC, enabling wishes to be recognised and acted upon in times of crisis. There is a more detailed

summary of the approach with links to literature in our supporting documents on practice approaches.

Identified outcomes from instituting supported decision making

In the co-design meetings, participants proposed the following as benefits from a legislated approach to

supported decision making:

Considerations for further discussion and planning

Participants in the co-design meetings identified a range of practice and planning considerations

Leadership plays a fundamental role in aligning the purpose, culture, strategies and behaviours of

leaders and discipline leaders to make required shifts to adapt traditional mental models, practices,

available for improved relationships and practitioner/consumer ratios. This Shift also relates to

consistent achievement. Mental health leadership in LHDs/LHNs is complex in that the wider

This Shift seeks a national program of leadership development on person-centred mental health care

and systems change. There is a need to support the shared learning, activity, resourcing and adaptive

leadership of mental health leaders as a unique and specialised form of health/disability/mental health

sector leadership, recognising that PCC and safety and quality in mental health needs to reflect trans

disciplinary approaches, social health, lived experience and disability knowledge bases. Mental health

leadership also needs a co-production and systems change capability. A Champions program, for

discipline based and lived experience leaders, should also be established.

program. This model aims at providing a safe, therapeutic environment for both consumers and staff in

to discuss mutual experiences and preferred ward routines. More about the literature on this approach

leadership:

Specific outcomes relating to a National Leadership Program

Considerations for further discussion and planning

practice of the South Australian Urgent Mental Health Care Centre.

detailed in Section 3. This includes issues relating to paternalism, increasing rights, involvement in

decision making and helping the system become recovery focused.

Lived experience leadership provides critical, big picture insights on access issues, safety, risk

tolerance, service gaps and impacts. The presence of leaders should be increased in numbers across

LHDs/LHNs governing councils, safety and quality leadership committees and on boards of NGO and

be supported at the Commonwealth level, via improved funding to support training and network

development, and support for national peak bodies to coordinate policy development and the lived

Outcomes related to increasing the scale and presence of lived experience leadership

Participants in the co-design meetings proposed that strengthening lived experience leadership in

governance and the lived experience workforce would result in:

decision making, including integration of perspectives into funding agreements and KPIs.

workforce.

to co-design as a way of generating knowledge, planning and decision making.

4.6 Shift 5: Develop a focus on ‘relational recovery’ and fund new

programs which work holistically to respond to intersecting social

determinants and related drivers of distress and crisis.

The focus of this Shift was developed out of participant’s perspectives on the issue and to incorporate a

holistic focus for service responses. This was also related to raised issues on the lack of coordinated

pathways for people with complex issues, the over emphasis on medicine-based care and the need for

flexible service choices to meet a range of psychosocial, recovery and clinical needs. Many participants

suggested that new program models which can meet these challenges need to be developed and

governments as well as sector leaders generally.

development, family networks, relationships, life roles and connections. Service responses from this

helping people develop skills and capabilities. It is also about programs that address the experiences of

preferences, strengths and interests. There also needs to be a system focus so that services can work

together effectively to offer a coordinated care approach and have the strong external partnerships that

facilitate this.

Open Dialogue was raised by several consultation participants as a promising program for this

approach, despite having a limited evidence base. This approach features multi-disciplinary teams that

support a focus on the consumer’s social connections and identifying strategies to resolve issues

across different life areas. More about this approach is available in our supporting documents (see

services:

enabling dedicated practitioner resources for collaboration, referral support and follow up.

Considerations for further discussion and planning

The following considerations and rationales for this approach were discussed in the co-design process:

of crisis, what people experience as well as the well-known social determinants of distress.

5

flexibility, and consumer/community driven outcomes. It should promote local, responsive and

adaptable service models, rather than one size fits all – ‘cookie cutter’ models.

basis of mental health practice and recovery.

supported by services which talk to each other.

This Shift is about improving consumer and carer experience and levels of care when seeking help for

mental health and suicide related crisis. Many consumers are demanding change toward better levels

of care, compassion, empowerment, respect and effective help when seeking help in crisis. Responses

should focus on trusting engagement, genuine connection, emotional safety, strengths, dignity, belief

the sector. This can be enhanced by ensuring practitioners are supported and guided by high quality

supervision, learning and clinical leadership while also valuing the contribution of peer led models.

There is a fundamental importance in services learning from the consumer perspective on risk and

safety, including the risks consumers feel in disclosing problems to practitioners when mental health

to support and resource this growth.

Outcomes from funding more crisis response models

and clinical models for supporting people through crisis, and help them attend to life stressors

(e.g., as occurs in the Urgent Mental Health Care Centre, SA).

consumers, and work in connected ways to identify and decide on a range of safety strategies.

and Emotional CPR.

Emerging models include Suicide Narratives.

is

a model of peer facilitated support groups rolling out in Australia. Other models being developed

include warm telephone lines, drop in spaces and peer residential respite places.

specific significant learning/value for suicide prevention and crisis from peer led approaches to

crisis, living with risk, disclosure and person-centred preferences.

initiatives,

informed care, risk awareness and tolerance, safety strategies and after crisis support is required

This Shift recognises that PCC responses, and CDC-based programs need to be developed to meet

local needs, preferences and wishes, and are meaningful to life context. Several participants in the

consultation highlighted how Aboriginal Social and Emotional Wellbeing Programs reflect this type of

development, as Aboriginal and Torres Strait Islander Health leaders have developed the SEWB

approach and offer programs within community-controlled health service context (see supporting

documents on practice approaches in Appendix 6).

locality and interests. The assumptions of many services regarding accessibility and use can also skew

effective access towards populations with higher incomes, private health cover, and access to urban

centres. Many voluntary community organisations and networks operate which represent lived

experience, offer support groups and educational opportunities or advocate for improved recognition

and care pathways in larger health services.

This Shift encourages state and Commonwealth funding bodies, Primary Health Networks and

partner with established providers to design mental health programs with new parameters and KPIs that

are in line with consumer/community preferences. Lived experience organisations working as NDIS

providers are also well placed to develop in this manner, yet access for consumers should not only be

to provide programs or co-design and co-deliver programs with specialist mental health services.

These outcomes are well reflected in available peer reviewed literature on PCC in mental health. The

environments and facilities provide positive outcomes in comfort and safety.

choice and control. Consumers lead decisions about care and about what services are required.

information, informed consent and trusting care relationships. CDC assumes consumer capability to

direct care that suits the recovery journey. Often there are different services required to meet wishes

and needs on different aspects of life. In mental health, this means a stronger emphasis on supportive

systems, coordination and communication is needed for consumers and carers.

The outcomes of CDC expressed by participants are similar to PCC but with a larger focus on

experiencing choice and self-determination. A focus on recovery needs should enable people to have

access to a wider range of services and programs that work for them. Psychologically safe services are

mental health. Evidence from individual studies indicates positive outcomes in improvements in self

education and employment.

Challenges, barriers and issues

The consultations identified an extensive arrange of challenges, barriers and issues relating to the

The themes highlight points of tension and possibility, and a connection to literature, in terms of

evidence of key PCC and CDC practices, processes and outcomes.

Recommended shifts to thinking, practices and service models

The consultation and analysis process also resulted in eight Shifts that would benefit the capacity of

services, organisations and communities to contribute to PCC or CDC experiences. The project then

engaged in a series of co-design meetings with 20 participants to explore the context of challenges and

importance of these areas of change. These discussions affirmed the directions of these Shifts, and

produced detailed ideas on outcomes, key considerations, gaps in thinking and aligned practice

approaches. It was notable that all the Shifts worked on during co-design point to key principles of the

care concepts, and reflect that change needs to occur on multiple levels involving multiple

supported in their practice and learning to work according to key recovery orientated care practices and

the expressed wishes and preferences of consumer and carer groups. This support includes ways of

working through and reframing dilemmas and tensions associated with risk and safety in crisis

situations, and taking a wider perspective on how risk, opportunity and support is carried by consumers,

carers and providers over time.

The focus on leadership development highlights the need for sustained leadership development for

effective and inclusive governance. This report notes the need to raise the profile and scale of lived

experience leadership, as well for the broader health sector to acknowledge that mental health specific

PCC and CDC leadership is needed and provide resources to support it.

Several of the Shifts relate to the need for improved accessibility, consumer led design and co-design

of programs and service pathways. Funding and commissioning can be used to support the expansion

of peer and community organisations and improve the capacity of these organisations to provide peer

and community organisations can provide improved information and resources, peer/practitioner

consumers, carers, families and kinship groups step through the gaps in access, information,

and ‘nominated’ support people, as well as other ways of recognising autonomy, within mental

health legislation.

change in public mental health services.

respond to intersecting social determinants and related drivers of distress and crisis.

care pathways within health systems.

Further work to define preferred outcomes from both PCC and CDC

The research team observed over the course of this project that there are many diverse outcomes

cover many aspects of the consumer and carer journey and refer to quality of service indicators,

use of services as well as longer term mental health outcomes. As consumers use acute care,

community care and different psychosocial supports, there are various service sectors which also have

different ways of defining outcomes.

There is a need to develop a framework of PCC and CDC outcomes and impacts. This would be a

development at the national level. As such, we recommend funding quality research to co-design and

Appendix 1: Consumer and carer experience and perspectives

Appendix 2: Background discussion paper

Appendix 3: Interview schedule

Plain language summary

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21. Snethen G, Bilger A, Maula EC, Salzer MS. Exploring personal medicine as part of self-directed care:

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23. Isaacs AN, Dalziel K, Sutton K, Maybery D. Referral patterns and implementation costs of the Partners

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25. COMHWA. Consultation report; community treatement and emergency response roadmap project.

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29. Australian Institue of Health and Welfare. Mental health services in Australia, Consumer perspectives of

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33. Wand T, Glover S, Paul D. What should be the future focus of mental health nursing? Exploring the

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34. Buus N, Clifford B, Isobel S, King L, Wong S, McCloughen A. Exploring the role of mental health nurses

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36. World Health Organisation, Guidance on community mental health services: promoting person-centred

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39. Wilson E, Campain R, Pollock S, Brophy L, Stratford A. Exploring the personal, programmatic and

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41. McCabe R, Whittington R, Cramond L, Perkins E. Contested understandings of recovery in mental

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42. Leonhardt BL, Huling K, Hamm JA, Roe D, Hasson-Ohayon I, McLeod HJ, et al. Recovery and serious

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44. Segal L, Guy S, Leach M, Groves A, Turnbull C, Furber G. A needs-based workforce model to deliver

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46. Productivity Commission, Mental Health, Report no. 95, Canberra, 2020.

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49. SA Health. The Mental Health Act 2009 . Office of the Chief Psychiarist. 2022. Available from:

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51. Gask L, Coventry P. Person-centred mental health care: The challenge of implementation.

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52. Holley J, Chambers M, Gillard S. The impact of risk management practice upon the implementation of

recovery-oriented care in community mental health services: a qualitative investigation. Journal of

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53. Marsh P, Kelly L. Dignity of risk in the community: A review of and reflections on the literature. Health,

providers’ job satisfaction and work-related health: A scoping review. BMJ open. 2020;10(12):e042658.

55. Knaak S, Mantler E, Szeto A. Mental illness-related stigma in healthcare: Barriers to access and care

and evidence-based solutions. Healthcare Management Forum; 2017:30(2):111-116.

56. Valery K-M, Prouteau A. Schizophrenia stigma in mental health professionals and associated factors: A

systematic review. Psychiatry Research. 2020;290:113068.

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67. The Humane Clinic. Suicide narratives. Adelaide: The Humane Clinic. 2020. Available from:

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69. Illawarra Shoalhaven Suicide Prevention Collaborative. Safe Spaces: a ‘warm’ alternative for people in

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70. Zero Suicide Institute of Australasia. About Zero Suicide Healthcare. Available from:

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71. 4 Mental Health. 4 Mental Health. Conwy: 4MH. 2020. Available from: https://4mentalhealth.com/.

72. Illawarra Shoalhaven Suicide Prevention Collaborative. Illawarra Shoalhaven Suicide Prevention

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73. Baker AE, Procter NG, Ferguson MS. Engaging with culturally and linguistically diverse communities to

reduce the impact of depression and anxiety: a narrative review. Health & Social Care in the

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