Wednesday, March 19, 2014

Consumer Collaborative Research on Peer Support

Allan Pinches: Consumer-collaborative research as a key enabler for peer support -- Mind Colloquium video September 2012.

Research Report: Putting the Community into Community Care Unit

Powerpoint presentation 

A new consumer-led research report on Peer Support offers a “Rich Knowledge Resource.” – By Allan Pinches

AN IN DEPTH REPORT from the consumer-led Northern CCU Peer Support Research and
Development Project: “Putting the community into Community Care Unit” has helped strengthen the evidence base for the employment of consumer peer support workers in mental health services.

Consumer Consultant Allan Pinches was the Principal Researcher for the 16-month project, which
was funded by a Department of Health Victoria Mental Health and Drugs Research Fellowship Grant.

The main purpose of the project was to research and develop ways to build a possible Peer Support program and culture into the Northern Community Care Unit (CCU), a 20-resident adult psychiatric rehab service in Preston.

The project, as shown in various ways in the final report, resulted in a clear consensus among CCU
consumer participants and expert project consumer co-facilitators, that a Peer Support Program and
the employment of a Peer Support Worker (or workers) was likely to be beneficial to consumers.

This trend was confirmed by the favourable results of the formal Evaluation forms after the three
Peer Education Sessions of the trialling stage.

While discussions took place about ways that a peer support program could be developed at the Northern CCU, the highly participatory project workshops generated a rich knowledge resource, in
which consumers identified a myriad of ways that peer support could “make a difference” –
whereby friendship and mutual support could help fulfil a range of needs, hopes, states of health
and wellbeing, participation in the community, empowerment, and progress towards personal

Resident/ consumers could be encouraged to share coping strategies, lessons/ insights
from life, information about opportunities in the community and actively supporting each other inexploring options.

A range of possible structures and processes emerged from consumer discussions towards a multifaceted Peer Support Program at Northern CCU, including the employment of a Peer Support
Worker (or workers.)

This was partly based on a review of notable examples of the increasing number of articles about peer support as a form of paid service provision within mental health services, including some key consumer “grey literature” materials.

Supplementing this was some networking with local consumer movement knowledge holders.

The research project recognised the importance of ensuring that any Peer Support Worker (or workers) should actively engage with the resident/ consumers on site, and encourage them to share their experiences, lessons from life, insights, problem solving, the values of friendship and mutual support, and sharing knowledge and strategies about pathways towards personal recovery.

Collaboration between PSWs, consumers and program staff is seen as important.

Part of the rationale for the project was a widespread consumer movement belief that peer support often has a natural tendency to spring up among consumers in service settings, and that adding
consumer leadership, structures and resources could greatly amplify the benefits of such

"... peer support often has a natural tendency to spring up among consumers in service settings, and... adding consumer leadership, structures and resources could greatly amplify the benefits of such interactions."

Another major part of the rationale was the apparent “gap” that while PDRSSs (Psychiatric Disability Rehabilitation and Support Services) receive some government funding to provide peer support programs and peer workers, clinical services do not, at this stage receive funding for peer support.

Recent policy statements suggest this may change in the medium term.

One message that comes through strongly in the Northern CCU project is that there is an abundance of ways that peer support could be beneficial to consumers and so many ways that it can increase the effective reach, degree of meaningfulness and diversity of responses that could be offered to consumers of mental health services. Peer support addresses a different and more personalised domain of the consumer’s life, compared to standard mental health treatment and care, but both service types can co-exist.

In the six specially themed project workshops and the three Peer Education Sessions of the trialling stage, participants discussed in creative workshop sessions with the Principal Researcher and a number of eminent consumer co-facilitators, many possible elements of a dedicated multi-faceted Peer Support Program for the Northern CCU. The participants became increasingly enthusiastic, creative and conversant with the possibilities of peer support.

The project maintained a clear and conscientious dedication to its consumer-collaborative Participatory Action Research (PAR) methodology, with every effort to maximise consumer participation and the wisdom and insights that can flow from consumer perspective discussions.

In many ways, the PAR methodology was worthy of being highlighted as a project outcome in itself, because of the inclusive quality of consumer discussion, good feelings, and the articulation it promoted.

Articles will be written up for journal articles and conference presentations as part of the funding agreement. It is hoped that an on the ground peer support program will grow out of this project at Northern CCU and maybe beyond.

The research project was carried out under the auspices of the Northern CCU, which is part of the

Northern AMHS. The Northern AMHS Clinical Director Assoc. Prof. Suresh Sundram and Darebin
Community Mental Health Service Manager, Ms Christine Hodge were Supervisor/ Co-Researchers
for the Project.

The project went through the extensive ethics approval processes with the Mental

Health Research and Ethics Committee (Melbourne Health). An Executive Steering Committee also
supported the project and an eminent group of Consumer Co-facilitators assisted in scoping and running the workshop sessions. A total of nine Northern CCU resident/ consumers participated, to
varying degrees.

The research report contains a number of easily navigated sections, drawn from creative discussions
with Northern CCU consumers, with the potential to be built upon in a myriad of ways. This includes:

Recommendations about a range of initiatives towards a multi-faceted Peer Support Program and
culture at Northern CCU, and with possible wider application across other services. This has yet to
be actioned.

"The project maintained a clear and conscientious dedication to its consumer-collaborative Participatory Action Research (PAR) methodology, with every effort to maximise consumer participation and the wisdom and insights that can flow from consumer perspective discussions."

A model for a Peer Support Program, under four sub-headings: (1) Peer education and support
groups; (2) Foundational consumer participation activities; (3) Systemic advocacy, relationship
building and shared learning with staff; (4) Consumers to support each other exploring options
and getting more involved with the community.

A Literature Review covered many recent developments and key debates in mental health peer
support, based on growing numbers of articles, conference presentations, mental health service models, and consumer “grey literature”. This was intended to help provide a baseline for
developing a model.

Augmented information came from networking with local consumer experts, and key peer
support related organisations and individual “knowledge holders” were consulted to help create
a base for thinking about the possible shape of peer support models at the Northern CCU.

Edited highlights of the six Creative workshop discussions among consumers and the three
trialling stage Peer Education Sessions – provide a wealth of consumer perspective thinking about
needs identification, peer support as part problem solving and creative building of life options.

These sections are filled with interesting and compelling quotes and form a valuable knowledge
resource within the already valuable report.

Some special subjects were: Defining peer support and the peer support happening informally;
leadership and possible role and duties of peer workers; peer support and the search for personal
recovery; peer support and building bridges back into the wider community; and meaningful
activity, education and employment…and much more.

The author thanks and for the media materials made available for this posting.

Tuesday, October 18, 2011

Book Review: "Building in Research and Evaluation: Human inquiry for living systems: by Yoland Wadsworth

Review by Allan Pinches, Consumer Consultant in mental health and Bachelor of Arts in Community Development

[This review was first published in New Paradigm, 2011]


“Without changing our patterns of thought we will not be able to solve the problems we created with our current patterns of thought.”
               - Albert Einstein (Quoted in Ackoff in 2004)

Yoland Wadsworth’s new book is her Magnum Opus, as the social research and evaluation “resource person” of choice for thousands of people in their communities.

Wadsworth is an Australian social research and evaluation practitioner, methodology theorist and educator – and author of the bestsellers “Do-It-Yourself Social Research” and “Everyday Evaluation on the Run” – who has put innovative and empowering tools of social inquiry into the hands of many thousands of people in their communities, to help give them a stronger “say” in dealing with community, health and human services organisations.

Wadsworth’s new book, “Building in Research and Evaluation:
Human inquiry for living systems” (2010, Allen & Unwin/ Action Research Press) is said to be the final instalment of her social research and evaluation trilogy.

This far-reaching and comprehensive book of more than 300 pages, took a decade to write and is described as the Magnum Opus of a busy and distinguished career. Yoland Wadsworth is Adjunct Professor, Centre for Applied Social Research, RMIT University, and holds several other posts.

This outstanding work offers a generous feast of practical knowledge and wisdom, drawn from the author’s 38 years as a leading “resource person for others’ later efforts” in practicebased social research, across many sectors and organisations.

Wadsworth writes about her pleasant surprise, in early preparations to this book, in learning about an apparent high level of adoption by researchers and evaluators in many fields of methodologies similar to those she has tested and recommended. However, there were other reports of all-too-many “people centred” conflicts and other problems such as an apparent lack of adherence to an evidence base in human services organisations.

Meanwhile, many innovative projects were being initiated here and there, but often funded as ad hoc short term projects. There was also little evidence of widespread preparations to develop and build in cyclic structures for ongoing social research and evaluation in the running of human services organisations, let alone with humanising ideals.

These and other conundrums set many challenges for the author to study the structures and processes of human services organisations, by envisioning them as “living systems” and working out the benefits that might flow.

Wadsworth’s book has a great deal to offer on many levels. Beyond its functions as a reference work - which reviews and draws upon extensive lessons learned from past projects - there is much which is
new, creative, strategic, inspiring, questioning, challenging, and determinedly striving to develop ways for the voices of people disempowered by  “systems” to be heard by policy makers and power holders.

While many combinations of  “sequences of research cycle questions” are offered,  it is worth noting that the foundations are somewhat similar to action research frameworks, which tend to start out straightforward, then are elaborated upon. While there can be many permutations, the basic steps can be summarised:

Observe – Action --> Reflect --> Plan --> Act --> Observe – Action -->

“What we know in life is only where we have decided to rest with our questioning.”

 -- Fran Peavey,

American community activist and proponent of Strategic Questioning


The book deals extensively with “building in a culture of inquiry” -- in organisations and in the community – and in several parts closely examines many structural underpinnings of social research and evaluation, particularly when applied to mental health consumer participation, evaluation, and community-based Participatory Action Research.

There is a powerful exposition of methodological structures in social inquiry, which can inform the reader’s thinking about:

  • detailed principles for research and evaluation within complex human service organisations, when viewed as “living systems”;
  • sequences and examples of “research cycle questions” which can be creatively harnessed inworking towards “intelligent systems” which could also become self-adjusting; and,
  • promotion of the development of more (truly) human services, partly through service providers being encouraged to open up to listen carefully and without flinching to the expressed hurts, unmet needs, and creative thinking of consumers.

There is also a major section which crystallises 10 “exemplars” of substantial projects in which Wadsworth has been involved over a long period in human services settings. But the larger list spanned: health, education, welfare, non-government organisations, local, state and federal government, community groups working with youth, homelessness, disability, community and mental health, health promotion, hospitals, schools, universities, child and family services, the disadvantaged, the excluded, agriculture, environment, Indigenous people with a commercial small business.

Yoland Wadsworth is well known as the social research and evaluation
theorist who worked in collaboration with consumer researcher Merinda Epstein in establishing and leading the Understanding and
Involvement Project at Royal Park Psychiatric Hospital, in 1990–96,
which won awards as a consumer participatory/ staff collaborative

“U & I” (as it became affectionately known) became a training
ground of many consumer consultants, and ultimately became a major
part of the model for the statewide introduction of consumer consultants in 1996. (See the compendium, “The Essential ‘U & I’”
Wadsworth, in ongoing collaboration with Epstein; VicHealth 2001.)

In “Building in Research and Evaluation…” Wadsworth explains that the U & I project was an attempt to establish and refine processes by which staff and consumers in psychiatric wards could routinely collaborate to research and evaluate of the experiences of consumers, and make the consequent relevant and appropriate changes to the hospital practices. In some ways this was attempting to build back into the system a capacity for reflection and “time enough for understanding.”

These changes could also allow a shift in debate in the mental health field towards the notions of “health, healing and recovery” rather than defaulting, too quickly, to matters of “fear, control and coercion.”

Wadsworth writes: “It wasn’t in the end seeking a ‘new vision’ or a ‘breakthrough formula’ which would leave distancing, ‘othering,’ fears, anxieties, and iatrogenesis as things of the past. In the end we saw how
‘the system’ mirrors and writes large the nature of each human being, and what we were seeking to put in place was something "equally systemic" to discharge the forcefield of oppositional distancing by creating spaces and places for both professionals and end-beneficiaries to come ‘side by side’ – for staff to feel it was safe to come out of the nursing station and for consumers to feel safe to tell staff what they were experiencing.”

Such shifts of emphasis can be found within the book’s summary of the U & I model’s 12-component framework summary, explained as placing a premium on such factors as: quality assurance; a two-way consumer-staff dialogue; appropriate and built in forums; utilising dynamic means of culture shift; and multiple and creative means of consumer input, and more.

Wadsworth also continues to espouse the need for “a missing fourth site” – a place for system staff trying to work for change, mirroring “consumer only places” where people share understanding and peer support, and tired and battered people can work on their health growth and development ideas.

"Empowerment is all about being treated as self-determining peoples, not client communities."

-- Muriel Bamblett, Self Determination Not Invasion (2008)

Wadsworth’s book carries many little touches of somewhat wry humour, arising naturally as observations from the text and her enjoyment of the powers of language. This is complemented by many cartoons satirising agency-life, quote panels, some key learning tables, sidebars, and stories from the field.

In presenting an overview of “human inquiry for living systems” Wadsworth uses an example of an ordinary learning activity from life – by conjuring up the thoughts, words, and actions of a person who has just learnt to ride a bicycle. This includes lines like:

“Wobble, wobble. Fall off. Go a bit further.

Wobble. Getting the hang of it. Staying on. Go faster, easier, better…”

Wadsworth’s book also provides a valuable participant’s eye overview of the history of research, evaluation and organisational development from the 70s onward, throughout human services and many of the political and bureaucratic processes in operation throughout.

There are also a number of interesting accounts of the history, development, and changing adaptations of many methodologies of social research and evaluation.

Saturday, April 30, 2011

Changing maps and different roads for mental health

By Allan Pinches
Some practical suggestions on how participants can use their key workers relationship more pro-activity and how to SQUEEZE the most possible healing and well-being ‘juices’ out of the key worker relationship.

Ask lots of questions: maximise your options by asking your key worker to outline a full range of such methods and strategies as:

• how to avail of other services in the area

• possible linkages to other community facilities

• self-monitoring, coping and self-management techniques which may have helped others, particularly participant-generated ideas

• day-to-day support needs and the participants own personal support network

• Crisis contact numbers and a rough guide to the workers times of availability

• Special ‘contract’ items between worker and participant i.e. – what the key worker will or won’t do and what the participant will or won’t do.

• The participant can negotiate about interventions or methods they find appropriate or not, and in turn they can give guarantees about behaviour not acceptable from them.

‘Brainstorm’ with your key worker on what conditions you would like to create in your life and what you would like to achieve, say in the next 2-3 years. For instance, in terms of work/meaningful activity, education, creative outlets, recreation, social and support networks, personal relationships, sexuality, spiritual/wholeness needs, mental and physical health, accommodation, self-care, finances, possessions, travel, holidays and fun, plus any other important aspiration the participant might have.

Start with small and achievable goals. As you fulfil your goals and grow in confidence, with each success, you can get progressively more ambitious. (But remember the ancient wisdom that it is often not the destination, but what is learnt and experienced on the journey that counts). It may be a spin-off of an activity that holds the value, rather than the activity itself. Venerated psychologist C.G. Jung was once asked what was the surest path to self-realisation. He replies without a second’s hesitation: The detour. Always the detour!

Develop a ‘plan’ of self-help methods and strategies to help you get out of difficulties at any time. This can be simple or elaborate and would consist of such things as self-healing, coping, monitoring, self-management, and reality checking methods that you can individually swing into action when needed.

These may range from affirmation on wall charts, a self-designed ‘program’ of daily activities or helpful reading materials, though to stress-relieving meditation, using relaxing music or taking interest in study or a hobby. It is really important to not become too isolated, look after one’s physical health, have good nutrition, get regular exercise and avoid harmful substances. All these issues could be strategically addressed in a plan.

Track your progress, new insights and ‘breakthroughs’ by keeping a personal diary. As well as helping to keep you on track, and provide inspiration during hard patches, writing about issues and feelings can help with coming to terms with issues; reduce anger over issues just like talking about it, and stopping worrying cycles and issues ‘going around and around’ in your head, by sort of ‘pinning’ them on paper, releasing you from the need to keep them in your active memory, and allowing you to get on with other things.

Some therapists even suggest a dedicated ‘worry time’ for an hour each day, at a fixed time, deferring worrying to that time. It can also be a good idea to try to do any ‘homework’ your key worker may suggest. It can be helpful to take notes during session with your key worker.

Allocate time for fun, enjoyment and humour. Make sure you get time for walking outdoors, enjoying nature. Light and the colours of nature are therapeutic, and exercise can help lift depression and walking is great for getting fit, slimmer and healthier. Try to schedule in at least one activity that you genuinely enjoy every day, as this can give you a big lift. And ‘laugh and the world laughs with you’. Watching selected programmes on TV can help beat the blues, or renting a comedy video. There are also cheap-priced try-outs for rookie comedians you can go to which can be fun. Or being in a studio audience for TV show taping which are often free

Learn to appreciate the ‘little things’ about life that are affirmative and good. A smile from a friend, an unexpected act of kindness from a stranger, a little baby, a beautiful scene in nature as you soak up the sunshine beneath a friendly old tree. That’s how it begins. Soon more and more substantial positives will come to light. If you find yourself jaded about life and lacking in hope and interest in things, it seems from the experience of some recoverers that there is just a hair’s breadth of distance between being interested in nothing and being interested in everything!

It just takes a small shift of mental outlook, often helped along by a little ray of hope.

Consumers as Educators in the Mental Health Field:

Bridging the Conceptual and Attitudinal Divide and Getting Positive Systems Change

A talk from the archives of Allan Pinches, Consumer Consultant for Mental Health, as a guest speaker at a forum for the Centre for Psychiatric Nursing Research and Practice, Melbourne University.

CONSUMER PARTICIPATION in mental health services – both clinical and Psychiatric Disability Support – is increasingly becoming recognised as an important resource for planning and development within services and a vehicle for positive systems change.

An emerging theme is that consumer participation, when properly implemented, is not just an add-on but can be a whole new way of doing things. That is the spirit of this talk.

It’s a pleasure and a privilege to be speaking to you today, as consumers, psychiatric nursing educators and other interested service providers and distinguished overseas guests. For graduate nurses entering the psychiatric nursing profession and seeking to uphold the quality and standing of this important discipline, in the face of what might be called “slings and arrows” within the healthcare system and the wider community, regarding all matters psychiatric, I commend your courage and determination. For you, and the consumers striving for better understanding – you’re going to need it.

Today I’ll be talking particularly about Consumers as Educators in the mental health field. I will seek to draw out some key themes which I hope will stimulate discussion in a short while.

I want to emphasise that the points I make today are drawn from the work of many scores and hundreds of people active in the mental health consumer movement -- making diverse contributions, over a long time, in many places, largely voluntarily, with courage and vision, often with considerable personal risk and sacrifice.

As with any genuine human rights and social change movement, the mental health consumer movement through dedication and hard work of many people slowly and often painfully has gradually brought about positive change -- emerging from cumulative “streams” of thought and activity, coming from many tributaries, which retain their individual importance.

Consumer Consultants throughout Victoria and many consumer reps working with them are basically working in a systems advocacy role – with limitations on the amount of individual advocacy we can do.

We do provide some information and advice to consumers on request and receive feedback and suggestions through a number of methods such as: forums, advisory committees, interviews, surveys, focus groups, ward visits, suggestion boxes, etc. This all follows on from the world-class consumer-based research and development work of the Understanding and Involvement Project. (U & I) which was a bridgehead for consumer participation from the late 1980s to about 1996. [After this the statewide implementation of consumer consultant positions took place.]

While consumer participation can be defined in a number of ways – perhaps one of the most useful ways is: for the consumer to be involved with the development and implementation of their own treatment plan; with full information; a range of choices; psychosocial and alternative approaches as well as medication; informed consent; and for the consumer’s preferences and concerns to be factored in.

Well documented international research shows that consumer participation in treatment planning provides enhanced outcomes and more chance of co-operation with treatment regimens. Consumers often have good insights into what treatments help in particular situations or what support would be most effective. Problems can also be picked up earlier, and corrected. Better recovery and long term outcomes can often result. Consumers gain in self esteem, empowerment, and have greater control over their lives.

However the consumer participation that gets the most “press” within publications in the field, is consumer participation in service planning and development. And the list often goes on to include service evaluation, recruitment, delivery, training & education. Consumer participation is based on the idea that consumers have unique knowledge and insights into problems and possible solutions within services.

Consumer participation has the potential to be a powerful engine for innovation and change in mental health services – with consumer-driven reform agendas and collaborative projects in mental health services making some headway -- but many improvements are still needed.

Emerging potentials of Consumers as Educators and surrounding issues…

Consumers as Educators in the Mental Health field would seem a logical further step -- one which Merinda Epstein and other consumer advocates have been calling for over a long time and which Cath Roper in her Consumer Academic position at the Centre for Psychiatric Nursing Research and Practice here at Melbourne University, is attempting to translate into reality. A key strategy Cath is using is the gathering together of a new coalition of interested consumers – called Psych Activism and Training, or “PAT” – to try to advance such initiatives.

Change will come with collaborative efforts, hard work, consistency and dedication -- as many movements in history have shown.

From a synthesis I have drawn from many settings, it seems to me that change often involves:

• having a vision as a guiding influence for positive change;

• keeping most “enlightened” principles in the forefront;

• using creative thinking;

• asking questions about how and why certain things came to be, and how things might be made better;

• looking at problems from many perspectives;

• seeking commonalities and understanding differences;

• exploring many possible solutions to the problems;

• assessing the barriers and constraints to change;

• working out many possible ways to overcome barriers so that all parties can benefit;

• trying to build a case for change;

• developing alliances or partnerships;

• trying some small goals and being ready to graduate to larger ones;

• being willing to evaluate, discuss, review and try something else… etc.

When it comes down to it change processes are not just a matter of cogs and levers, policies and practices…bringing about meaningful change is largely about winning over hearts and minds. It is about changing cultures within services. It is about seeking to minimise any and all attitudinal barriers. There are also many conceptual barriers in the mental health field which also need to be addressed. These can be embedded into the service procedures or in aspects of medical model approaches.

Some possible consumer participation activities with an education approach:

There are many exciting ways that consumer participation could be developed in the interests of disseminating unique consumer knowledge and insights -- if the good ideas and energy are backed up with financial, organisational, intellectual, informational and “people-power” style resources.

It is possible to imagine innovative projects such as:

• Consumer conducted participatory action research projects, in social, service and clinical areas.

• Consumers as speakers at many service provider conferences.

• Consumers contributing articles to professional nursing, social work, psychiatric or psychosocial rehabilitation journals. This already happens to some extent, particularly in disability support.

• Starting a consumer-run journal/ newsmagazine. Such a project, and in fact any consumer-driven work would need to allow for a diversity of voices reflecting the wide range of conceptual understandings, emphases and philosophies about mental health that all stakeholders bring to the discussion table. There is a wide range of views, among consumers as much as any other group. It is a highly subjective matter whether we are talking about: “madness”/ or difficult life crises/ or spiritual emergency/ or alternative views to the dominant social order/ and etc.

• Publishing of consumer perspective material on the Internet, in various kinds of books, in media outlets, and issues papers. This could include community radio programs and community TV. Perhaps a MH consumer media unit could be established. Media production starting at the community level and building up to mainstream programs have been an approach that has worked well for Aboriginal communities, women’s organisations, gay and lesbian groups, and culturally diverse groups.

• Consumer perspectives presented in video, CD ROM-multi-media, audio tapes and other educational and training materials in the field. Ideally, these would be largely consumer produced.

• Music, theatre and film presentations. Street theatre/ community theatre in schools. Sketch comedy or variety revue in the interests of professional and community education, giving messages in entertaining ways. This could help to liven up conferences of professionals.

• Consumers speakers bureaus, and a pool or register for consumer advocacy and rep work which service providers can access. The VMIAC has been developing such a register and looking at enhancing its information and education functions.

• Training courses for consumer speakers/ educators. And, perhaps, in line with an idea Merinda Epstein has proposed in a recent paper and again tonight, it would be wonderful for a centre for mental health consumer studies to be set up at a tertiary institute.

Many other ideas are possible – and I expect there will be many good ideas explored by all of you here tonight – but we need to coordinate our efforts, gain the support of governments and education authorities, and lobby for adequate funding and support.

A really important issue is for consumers to be properly paid for their work, in recognition of their unique knowledge and experience – and frequently insightful ideas for developing better service systems which better fit the need of consumer’s needs.

Some difficult areas we all need to discuss…

Some of the matters I am about to touch upon are not meant particularly as criticisms of service provider attitudes and practice. They are instead an attempt to illustrate, ask questions about and, understand what are the dynamics at work and what are the causes of problems in the way consumers say they are often viewed and treated by staff.

And they are intended to stimulate discussion today about how such issues might be addressed – and in particular to highlight the need for the consumer perspective to be included in professional education in the mental health field – so that staff can have a clearer understanding of the lived experience of consumers. This would also contribute to better communication and more collaborative and effective implementation of treatment.

VMIAC research, and many surveys and focus groups, have heard from consumers that if there is one thing about the mental health system they could change, it is the attitudes of mental health service staff.

Users of mental health services often say that in addition to the stigma in the community about mental illness, some of the worst stigma they encounter is within the mental health system itself. They express the wish that service providers – doctors, nurses, social workers etc – would show greater respect for their humanity and dignity.

Many consumers say that the perceived disrespect and judgemental attitudes often coming from staff can be most unhelpful and set back chances of recovery – but when staff “go the extra mile” to be friendly, polite, affirmative of the consumer as a person, engender hope and provide constructive advice and assistance -- for instance about setting goals and steps to achieve them -- these positive factors can make a tremendous difference in people’s lives. It’s not exactly rocket science.

Consumers often say: “Treat us well and we will get well sooner!” There is a growing body of anecdotal evidence and even empirical research to back this up this arguably self-evident clinical reality.

Possible helpful factors that consumers talk about is for staff to be able to listen, empathise, take into account people’s stated needs and wants, try to meet those needs, refrain from judgements, and for staff to engage in critical self-reflective practices, wherein practitioners self-challenge prejudicial and stereotypical thinking about people with mental illness or particular diagnostic groups.

Lets face it, there is a lot of baggage in the early history of psychiatry about patients with mental illness having “moral weakness” or being somehow to blame for their own fate, which can creep in, especially in stressful clinical environments.

There is also a lot of cultural “crap” – that’s a new scientific term I think -- about mental illness within society – you know “[the Carpet King...] has gone absolutely mad” and misleading media headlines about “psychotic killers”, and even the huge number of colourful synonyms for being crazy people use every day -- and service providers are not immune to this.

And the medical model often seems to have systemic side effects which can create various sets of pejorative ideas about people, where patients or consumers in a busy service setting – and we consumers can sometimes be difficult or demanding in some ways, or have inner experiences that can result in outer, supposedly “strange” behaviour, as well as making very reasonable requests or challenging things we find unacceptable -- become seen as something like naughty children who need to be put back in their place.

Questioning or resisting any aspect of treatment, or even seeking alternative treatments, can often be pathologised – labelled as non-compliant or lacking in “insight.” Our actual knowledge and insight is often discounted and ignored.

Consumer problems with some medical model approaches

We consumers often feel that the focus of the medical model is too narrow, and thus damaging.

Problems for consumer health and wellbeing can arise if the medical model is implemented in treatment in ways consumers may claim:

• focuses on symptoms and not the whole person. There is a tendency within the medical model for service providers to in some ways “objectify” the patient;

• is reductionistic of the many complex factors of a human life, concentrating mostly on a supposed “chemical imbalance of the brain” which only medication can “fix.”

• locates the “illness” discretely within the individual, without considering the wider context of other social pressures and issues that contribute to mental health problems.

• does not seek to “know” the person and his or her individual circumstances, character, or coping efforts – but is based on a rather superficial application of a symptom checklist from the D.S.M. IV text.

• contains strong elements of self fulfilling prophecy because of the way it downplays hope of recovery, and routinely hands out starkly negative prognoses;

• tends to overlook the role of the individual’s own efforts in recovery and illness management;

• looks mainly at people’s deficits and not abilities;

• largely ignores the many and complex social underpinnings of mental illness. This includes the life difficulties often experienced by people who seek to explore alternatives to the dominant paradigm. It is hard for people to “swim against the tide” but it can be argued that our society is richer for its poets, artists, visionaries, dissenters, and mystics;

• eschews the spiritual dimensions of mental health and illness;

One sometimes gets the sense that whatever we say is judged through a filter of our supposed “madness” – so our stories, needs, concerns and requests are often discounted because we supposedly don’t know what we are saying, and we end up getting little say in treatment decisions.

Towards improved MH service environments: can we build new bridges together between “Us and Them?”

I think that in busy mental health services, perhaps most particularly but not exclusively on Inpatient Units, service provider staff can, over time, become somewhat worn down and frustrated by the stresses, slowness of patients’ progress and sudden setbacks, the negative emotional charge that the work often carries, shortages of staff, time, and resources, a sense of trying to hold back a never ending tide of mental illness, low recognition and adverse career factors of psychiatric nursing within the healthcare industry and unfavorable community attitudes about mental illness, and the ongoing sense of attrition – or daily grind of difficult work – does take its toll.

Even workers who start out with the highest of ideals and aspirations, wanting to help and bring comfort to people with mental illness -- can experience a slippage in attitudes and reduced resilience, because of a wall of negativity that can slowly but surely build up between the staff and patients.

Part of this is the familiar “us and them” – or siege mentality – that can build up in many service locations, with staff or the “usses” in their fisbowl glass “nurse’s station” increasingly disconnected from the patients, or the “thems” out there.

But it seems to me that there’s more to it than that.

• One commonly occurring factor appears to be what has been termed “clinicians illusion.” Service provider staff, particularly those on wards, tend to see us when we are at our most unwell, and form ideas about consumers as a group based on the caseload experiences. This can lead to a truncated view of consumers lives. We do have difficulties and needs within our lives in the community But we also do have real lives, with complex matrices of relationship, involvement and meaning.

• The “Othering” of people with mental illness is a phenomenon that has been discussed by a number of psychiatrists critical of some aspects of the field, philosophers and consumer advocates in many settings. This seems to be a carry over from social and cultural attitudes which place mental illness as something to do with “those people over there” – rather than a part of a continuum of human experience. Philosopher Michel Foucault is one proponent of this concept of “othering” which was noted in many settings within society.

• Any “Us and Them” dynamic, being largely a by-product of stigma, means staff are often afraid of showing vulnerability or so called “weakness” – not being “like them” or – heaven forbid – having any psychological difficulties themselves! This can lead to a kind of defensiveness which can interfere with the way staff regard and communicate with consumers. Training and rules about strict maintenance of “professional boundaries” combined with warnings not to let patients “manipulate you” don’t enhance relations with consumers, therapeutically or interpersonally.

• Medical model and the clincial gaze; pathologising all behaviours, speech and expressions of need, preference or protest.

• “Power relations” within a service can be negative and self reinforcing; There is a tendency toward burearucracy, use of authority, and hierarchical systems – not to mention the need to cover yourself with legal requirements and endless “form-filling” and be able to justify yourself at a second’s notice. This type of service environnment doesn’t tend to be very empowering for individuals – either staff on the ground or patients. It does not reward risk taking of doing things differently or more collaboratively, tends to discourage initiative, imagination, or getting involved with patients beyond the bare basics.

• “Turning off” or “de-sensitising onself” when exposed to difficult situations, sensing the suffering of consumers and emotionally charged issues, is a common survival tactic – but it does not make for good or responsive nursing, or other service provision. Better solutions might include: de-briefing, or dare I say, peer support. Professional supervision is also very important. It may also be helpful to do some further study on particular issues, because understanding an issue can make it easier to handle emotionally.

• Fear of violence can emerge within what can be in many ways a negative environment. Consumers have many ideas about how to make things more pleasant and constructive for everyone, and it would pay to listen.

• Not understanding altered systems of meaning etc. assuming nonsense babble etc of consumers’ talk. There is often subsumed meaning in such talk, and an internal logic, which makes it wrong to dismiss talk or reports about the voices as being about “their junk.”

• Shortcuts. There is a human tendency to seek easy answers. M Scott Peck posited in his classic self help book “The Road Less Travelled,” that the Original Sin was taking shortcuts to get what we want – nothing irrevocably aligned to sexual relations, (except in that example, matters of the context of the relations, such as consent, motivations, or true or not declarations of love.) It is often easier and more expedient to coerce and seek to control people than to seek to understand and asks them about and try to meet their needs. Expediency is a questionable virtue.

The challenges are ahead of us. There is much potential for Consumers as Educators to make a very substantial contribution to the mental health field.

As an emerging and potentially very influential application of consumer participation practices, Consumers as Educators has the potential not just to improve mental health services, and not just to improve clinical practices, and not just to make services better and create more favourable environments for staff, consumers, carers and others alike – which are all likely outcomes.

But the interplay and ongoing collaborative blending of consumer perspective knowledge and professional “practice” knowledge can create new and mutually empowering dynamics, and base of shared learning and partnership, which can “unlock” many new potentials in the work between staff and clients.

Allan Pinches,
Consumer Consultant for Mental Health.
Bachelor of Arts in Community Development (VU)

Wednesday, April 27, 2011

How can churches help establish restorative justice for mental health consumers?

From a talk by Allan Pinches,
Consumer Consultant in Mental Health,
Bachelor of Arts in Community Development (VU)

at a Commission for Mission forum at St Andrew’s Uniting Church on September 2, 2009 on Restorative Justice for people with mental health issues.

Hi, my name is Allan Pinches and I have been working as a Consumer Consultant in mental health services for about 14 years – in the interests of consumer participation and service improvement, planning and development of mental health services – and I have seen a lot of welcome change in that time.

I have first hand experience as a mental health service user, including clinical services and Psychiatric Disability Rehabilitation and Support Services (PDRSs) for several decades, have also served on two boards of management.

Since the deinstitutionalization of mental health services, which began in Victoria the late 1980s, and arising from the social change movements of the 1960s and 1970s, the so-called mental health consumer movement emerged.

The key principle of consumer participation is that consumers – that is, direct users of mental health and related services -- have an acknowledged right to have a say in the planning and development of those services, in the interests of service quality, to ensure services are a good “fit” with people’s expressed needs, and to safeguard consumers rights, to name a few key areas.

The consumer movement is in fact a very diverse range of groupings, broadly encompassing: selfidentified psychiatric survivors seeking radical changes or alternatives to psychiatry; consumer advocacy workers directly representing consumers making specific complaints about a service; systemic advocates working at policy and service system planning and development level; human rights-focused activists

who seek to hold services and government authorities to account on Australian or international human rights covenants; and Consumer Consultants working in local area services, often in quite modest projects towards changes in service models. Many sessional-paid casual Consumer Reps also make an indispensable but sometimes under-recognised contribution.

Consumer movement growing and developing

I have seen the consumer movement grow in size, scope and diversity, and this is exciting. The latest trend has been towards an expansion of roles and activities into consumer research, consumers as educators of mental health staff, internet based consumer education and clearing house services, consumer designed initiatives, peer support worker projects, and more.

As a member of this panel of speakers, I am glad to have the opportunity to talk about Mental Health and

Restorative Justice, to such a friendly and thoughtful audience. Church groups are often valuable supporters of consumers in their wish to be more fully involved in the life of the community and in seeking reform in the mental health system.

When the term Restorative Justice has been applied at today’s conference at St Andrews Uniting Church, Box Hill, in the gospel sense of “Jesus Christ restoring people into the fullness of life…” I believe this bears a strong resemblance to the “recovery paradigm” (or recovery-based systems of treatment and support) in mental health services, which is becoming more and more the best practice standard in the field.

The consumer movement has played a large role in bringing about these new recovery-based approaches, and this is acknowledged as one of its major achievements.

The progress of recovery-based approaches in mental health and related services can be attributed to the enormous efforts by many people who contributed to debates leading up to the deinstitutionalization process – where consumers were often strong advocates for change, with the support of many different groups across the community.

When we consider what has been achieved, it has been no less than a massive task of “turning around the ship” of mental health services – from a long and often terrible history of custodial treatment within institutions to a more enlightened system which includes more personalized recovery-based service delivery methods, mostly in the community. Much has been achieved, but there is more to be done.

These new recovery-based methods -- following the lead from campaigns of the consumer movement and their supporters in America and other places -- maintain that it is essential that the consumer’s needs and

wishes be incorporated into the planning and decision making for their treatment and support, and the relationship between a consumer and service key worker can often usefully be envisaged as a “shared journey.”

The more that the institutionalised walls are able to be dissolved away -- so that more people can be treated in the community while being included and participating in the life of the community in all sorts of ways -- the better the chances people have of moving forward in their recovery journey, and yes, becoming “…restored into the fullness of life.” While it may be that not all of the symptoms may go away, the quality of life and opportunities for healing and wholeness are increased greatly.

Spirituality often important to people with mental health issues

People with mental health issues often have a deep interest in matters of spirituality and religion, for a wide range of reasons. It seems true that spiritual matters and mental health are aspects of life which share some common places within each person’s being: namely those areas which relate to meaning and purpose…and questions about why is one here, whether there is a God, what does he expect of us, what should I to do with my life…how do I stand in relation to others…etc.

I believe from my experience and anecdotally from many others, that some people’s breakdowns or mental ill health can partly attributed to a particular sensitivity to the enormous problems of the modern world and often feeling overwhelmed or incensed about the injustices in society.

These include issues such as the growing gap between rich and poor; dominant materialistic values; work competition and life stress; apparent trends towards a “harder” and less community-minded social order; downward social pressures for some, limiting educational opportunities, creating poverty traps and unemployment; homelessness and housing stress; problems in relationships; outbreaks of senseless violence and burgeoning drug issues; governments and politicians seemingly unwilling or unable to go beyond populist policy formulations…and more. Many of these factors can make people sick…literally.

And regrettably, social stigma about mental illness, often stirred up by media misinformation and myths in popular culture and public opinion, tends to make it harder, or pose disincentives, for people with

mental health problems to access timely and appropriate mental health treatment, which could help them maintain their participation in the life of the community and maintain social and economic links. It is important that social inclusion be maintained to the utmost extent, for the sake of people’s mental health, practical coping and best chances for recovery.

People with mental health issues, I believe, often do have a lot of experience of society’s problems and difficulties -- which is precisely why I believe they should be carefully listened to as possible informants of social policy and reform. Mental health consumers often have good ideas for social change, and considerable wisdom and insight to offer. There is a need to go be able to listen beyond surface words, which may at first sound strange, and hear messages and meanings very possibly coming from a deep and reflective place.

I believe that one of the key take-home lessons from recovery-based approaches to mental health are that people are best assisted by engaging with them directly and equally as a people. It seems that one deepest fault-lines which contributed to many of the failings of the institution-based mental health system over a long period – also found in social stigma about mental illness – was the “us and them” mentality, which even if subconscious or unintended, effectively treated the patient/ mentally ill person as another, lesser, type of human being.

Holding the person and their problems at “arms length” is a virtual guarantee that treatment would not be effective and could be somewhat blind to the humanity and “wholeness” of the person. While such approaches are becoming less common in recent times, unfortunately, consumers say that occasional echoes linger on.

The person’s recovery journey often involves the re-kindling of their hopes and dreams. While talking about “dreams” sometimes sounds a bit “airy fairy” or sentimental to service provider staff, it seems to me that hope is the starting point – perhaps a kind of spark – for recovery, and it also strikes me that without the ability to dream, it is pretty hard to muster up the capacity to build hopes.

When the person has started to gather some hopes towards recovery, it is often useful to encourage them to start thinking about some things they might enjoy doing – perhaps following up on some interests they may have had earlier, or to explore some options for community participation, or assisted by a service worker, the consumer can develop some personally meaningful goals for action.

As a suggestion, I think it would be wonderful for many church groups and congregations to offer support and mutual friendship to one or two, or a small cluster of people with mental health problems, based on hope, recovery and the gospel notion of the justice of “being restored to the fullness of life…”

Thank you for your attention. I wish you well for the rest of the day.

Allan Pinches

Consumer Consultant for Mental Health
Bachelor of Arts in Community Development (VU)

Sunday, April 24, 2011

Consumer-driven innovations for psychiatric inpatient unit therapeutic group programs:
Going "modular" and better targeting to consumers' needs.

Prepared by Allan Pinches, Consumer Consultant for Mental Health.
( With conceptual development and additional research by Sue Robertson. )

Section 1: Overview: Towards some "fresh approaches" in psychiatric inpatient unit therapeutic group programs

This discussion paper outlines some consumer suggestions for change and development in psychiatric inpatient unit therapeutic group/ activity programs.

The document is designed to stimulate discussion. Nothing is stated or implied to be "set in concrete" and there is enormous potential for creatively and co-operatively developing some of the models suggested herein, in a mode of partnership between staff and consumers.

It is believed that the approaches outlined here - which would mean not just some new groups but a whole new and more responsive system of group programs - would go a long way toward increasing the levels of consumer satisfaction with the any Psychiatric Inpatient Service. We believe they would also greatly enhance service effectiveness.

Suggested new approaches toward optimising ward programs - to reflect consumer perspectives - involve a fourfold approach:

Restoration of the pre-eminence of therapeutic group programs as an important part of consumers' hospital treatment - encouraging in consumers a pro-active approach to treatment - together with promoting a support-enhanced and more needs-targeted program structure.

Some innovative re-structuring of program forms and content, drawing on current and high quality information and advice from various disciplines.

Increasing the degree of staff specialisation -- and utilising existing special skills -- through establishment of "portfolios" of developed expertise in some key consumer-needs areas, and having a key role in group programs targeting particular needs.

A new integrated consumer needs assessment, treatment planning and resource-linking process to help consumers identify areas needing to be worked on, having a say in approaches to be used, and linking them with appropriate staff, consumers and information resources. Also, attention to exit planning and community supports.

The key recommendation is for the development of a "modular" group program structure which would provide for a range of program units or "modules" on specific mental health issues to be prepared and maintained on "standby", and for these elements to be "activated" when required for small groups of consumers with similar issues, depending on the actual configuration of needs present in consumers on the ward at any given time.

Thus if there are, for example, two or five consumers with drug and alcohol issues on the ward - or "voices" or depression issues - they would be able to work through activities in group program modules specifically activated for them, which would be tailored to the types of collective therapeutic and psychoeducational needs they may be experiencing. It is envisaged that there would also be built-in scope for individualised counseling and support. Naturally such a program would need to be sensitively applied on the ground, with careful consultation with consumers about how such programs may help meet some of their needs/ goals for recovery and offering choices.

Actvities could be adapted to allow them to be worked through by individuals, if a group process is not possible or appropriate. (It is acknowledged that a some psychiatric inpatient units have been experimenting with "modular" type program content for some time, and this is to be commended.

However the activities suggested here are somewhat different in that they are more particularly targeted to consumer high-need areas/ issues, they are "activated" according to needs present on a ward at any given time and would involve setting up a new assessment, treatment planning and resource linking process.)

The proposed "modular" approach to programs would allow "clustering" of therapeutic treatments for particular consumers and take advantage of potential synergies in group learning and peer support which are possible with groups of consumers who share similar issues.

A guiding principle and rationale for a new consumer-needs targeted "modular" approach to ward programs.

This proposed model is based on a key principle being increasingly articulated by consumers that clinical service systems and methods which fail to provide specific opportunities for consumers to pro-actively work toward their recovery - rather than being passive recipients of medication - are inherently dispempowering.

The over-arching rationale for our suggested approaches is that because patients these days have quite short hospital stays and are presenting with very serious mental health problems/ needs, this indicates a need for urgent, intensive and targeted group and/ or individual therapeutic interventions, to address needs consumers are presenting with and assist and empower them to cope with and better address their issues when they return to their lives in the community.

These suggestions are based on first-hand experience of mental health services since 1980 and speaking to literally hundreds of consumers both informally and in formal consultation/ developmental roles for more than a decade. It also draws on established consumer knowledge in a number of areas.

It is envisaged that the "modular" program units could be prepared as activity "packages" that could be run by staff fairly interchangably, but would most desirably be overseen and/or operated by staff with "portfolios" of developed expertise in specific areas.

This would naturally have implications for the service's recruitment and training activities, which could be factored in over time. It is acknowledge that there are quite a number of staff who have already undertaken extra training in a number of consumer high-needs areas, but the problem has been twofold:

Firstly, it is acknowledged that there are a number of practical constraints and barriers systemically, due to lack of resources, staffing levels and rostering problems - which tend to gravitate against consumers with particular needs as "a matter of course" being matched up with staff with skills in those areas; and secondly, in the absence of a co-ordinated and regulated system for matching up staff with special skills with particular special consumer needs, this currently happening on a largely ad hoc basis.

There would be a need for an enhanced assessment and treatment planning processes, which would seek to match a consumer's needs with the appropriate staff, fellow-consumers and other resources, within a co-ordinated framework.

Key areas of special expertise for staff "portfolios" we consider necessary to meet needs many consumers are presenting with include:

Drug and alcohol issues, including appropriate psychosocial contextual and harm minimisation work; dealing with post traumatic stress problems related to sexual abuse/ assault; working through family of origin/ relationship/ parenting issues; anger management and other emotional problems; dealing with positive symptoms such as "voices"and thought disorders; countering depression through cognitive means and addressing causal issues; strategies for alleviating negative symptoms, particularly in longstanding consumers; and psychoeduation and linking to community support/ rehabilitation/ self-development/ pre-vocational resources, particularly for consumers relatively new to the system.

Of course other issues/ categories could be added and some categories merged, subject to further research, and in the implementation of a modular program system various different areas of therapeutic work mixed and matched as indicated as appropriate.

Such a program modules would need to be developed with the active collaboration of consumers, who could take part in workshops and group/ individual consultations aimed at developing programs which would effectively target specific areas of need. Consumer based research and innovative service models being developed elsewhere could also inform these processes.
Targeting some high-needs areas for consumers

We consider that there is strong evidence of high consumer needs in areas such as:

*  psychoeducation needs regarding particularly schizophrenia and bipolar disorder;

*  drug and alcohol issues;
*  information about rights and responsibilities in the mental heath system, including strategies to get the most benefit from services, complaints processes, and facts needed to negotiate personally appropriate treatment plans and modalities.
*  sexual post trauma and related problems;

*  grief and loss issues from life experiences;

*  extra attention needed for general health issues as a complication psychiatric illness;

*  recreation planning, overcoming access barriers and associated confidence building work with consumers, to facilitate some aspects of recovery through recreation including sport, planning and saving money for entertainment needs, and other forms of active and passive recreation. This could involve NAMHS staff with recreational interests of skills and/or external agencies such as Outdoors Inc; and,

*  family/ relationship/ parenting issues, which remain under-recognised and under-addressed in the system.

*  cross-cultural issues and information sharing with carers.

*  support and coping/ change strategies regarding social exclusion and isolation resulting from living on benefits, community stigma about mental illness, poor employment chances, social avoidance, barriers to accessing both generic and mental health services, sub-standard housing, alienation from families, loss of living skills and self esteem from longstanding illness and past institutionalisation. All of these areas could be addressed in supportive ways and appropriate linkages and referrals recommended, with full follow-up.

*  education and pre-vocational resource exploration and linkages (with full follow-up) including literacy and numeracy, and preparations for further education and training.

Some possible ways forward... (including low cost options.)

*  This document is put forward as a positive new direction for psychiatric inpatient units to adapt to their own local conditions. There is potential in this proposed framework to:

*  explore (and support/ amend/ qualify) the merits of the proposals,

*  highlight and try to solve the inevitable systemic barriers and constraints,

*  identify the "realtime" links to conditions within each service, such as official forms and consumer pathways and community support and assistance links,

*  identify and log inpatient unit skills posessed by staff, arising from special training and experience as well as working out implications for staff training requirements.

*  work up a step-by-step plan for developing a new program system including timelines, who-does-what action planning,
*  "workshopping" a process for researching, developing and implementing the proposed new "modular" program system.

IMPORTANT NOTE: It is intended that in any such a service development process, consumers would be involved in real and meaningful roles.
It is also possible - and we think both desirable and easily justifiable financially as a one-off, service quality improvement initiative - that an innovative grant to develop a "modular" and consumer needs-targeted program may be able to be applied for with the Department of Human Services in Victoria, and by relevant departments in other areas. However, in the event of special funding not being available, this should not prevent an attempt to develop and trial the new "modular" approach.
If this goes ahead as a project for program development, the tasks could be managed internally in a service, perhaps using a variety of human resources, knowledge resources from the best available information locally and overseas in relevant discipline areas (eg drug and alcohol, sexual assault counselling, ethnic community agencies etc) together with active input from consumers, who would also play a (co-) facilitational role in various consultative processes.

It would also be good to utilise in program development along these lines, the services of some of the Occupational Therapy, Social Work, Nursing and Psychology students who are working out work training placements on a ward. The project may also be of interest as a research project to post-graduate students in a relevant discipline. There are many possibilities for research, consultation, development and implementation.

The remainder of this document contains Section 2, ahead of another two sections to be developed in the future in the event that a likely takeup of the approach is signalled.

Section 2 deals with consumers' perceptions about the benefits of pro-active ward programs in terms of their recovery and what they said were marked therapeutic benefits of ward programs.

Section 3 makes suggestions for change and development aimed at increasing the amount and effectiveness of programs offered and enhancing the way programs are structured, to better tailor programs to consumers' individual issues. (Being developed, to be released later)

Section 4 gives some consideration to the barriers and constraints which tend to gravitate against effective programs, including perceived lack of resources and the dominance of medication and the medical model. Some possible solutions to these barriers and constraints are also put forward. (Being developed. To be released later.)

Section 5 examines some of the problems regarding ward programs that consumers have raised, including what is often a scarcity of structured programs or group work at times, and a perceived lack of relevance and depth in any programs. (Being developed, to be released later.)

Section 2: Advantages of therapeutic group programs as expressed by consumers

Consumers say therapeutic group programs - as experienced in some recent stays and as experienced over a considerable period within the psychiatric inpatient system in the past - can be demonstrated to be particularly helpful because they:

*  can help address and give opportunities to actively work on issues believed to have contributed to their hospital admission. This was seen as both helpful and encouraging.

*  lead to a more positive and pro-active ward environment, with better health outcomes for consumers, and less crisis management for staff, who will also have more interesting and rewarding work roles.

*  provide opportunities to get support from staff and fellow consumers, and to participate in peer support and thus help themselves through helping others.

*  enhance consumer knowledge and understanding of their conditions and treatment and develop an improved knowledge base, which would enable them to have more of a say in the development of their treatment plans, both on the ward and during treatment in the community. (ie, case management, GP shared care or private psychiatrist.)

*  educate consumers about their rights and responsibilities in the mental health system, encourage feedback about treatment and services and "nip in the bud" problems regarding their conditions and treatment before they grow too overwhelming.

*  relieve some of the powerlessness that goes with "swimming in problems" during a hospital stay, which can happen due to (varying levels, depending on staff and resources, of) lack of structured activities and the resulting boredom, frustration and acting-out that can result.

*  enhance a consumer's legal rights position, eg becoming "voluntary" or to be able to demonstrate that they can comply with treatment and do not need to be put on a CTO. Without the opportunity to work toward recovery, a consumer is greatly limited in having ways of demonstrating such signs of progress.

*  provide opportunities to share experiences and learn knowledge of other consumer's coping strategies and learn staff suggestions for self-help etc.

*  encourage a pro-active approach to treatment, rather than passive receiving of medication which consumers say leaves out some underlying causal factors of psychiatric illness and disability and consequently some needs remain unaddressed during hospital stays.

*  help build a culture and platform for peer support among consumers.
help make treatment more holistic taking into account aetiology and social factors, not just medical model, which consumers say is too narrow and disempowering and tends to rob them of initiative, beyond "take your medication."

Many consumers believe that there are many other answers apart from medication, but system tends to under-emphasise other approaches. Changes in the system, as part of the processes called "mainstreaming" have tended to add emphasis to the medical model and a moving away from inpatient group therapeutic programs.

Draft only version. May 1999.

Report prepared by Allan Pinches, Consumer Consultant for Mental Health

(With conceptual modelling and additional research by Sue Robertson, BA, (Monash.)

There is a great deal more material under development regarding this model and Allan Pinches and his associates are available to discuss further how we may assist in developing approaches to implementing a "modular" program structure in a psychiatric inpatient unit, or adapt the concept for a psychosocial rehabilitation service.
Allan Pinches,
Consumer Consultant for Mental Health
Bachelor of Arts in Community Development (VU)

Saturday, February 26, 2011

Primary Consumer Participation -- Putting the Consumer in Control.

TheMHS Pre-Conference Consumer Forum

 Workshop 2

September 4, 2007.

Primary Consumer Participation: Putting the Consumer in Control.

 Allan Pinches,
Consumer Consultant for Mental Health

 In association with
Vanessa Lynne, Health Issues Centre, Latrobe University

Consumer participation has been the subject of a large number of articles, consumer committee minutes, conference papers, surveys, strategic plans and “how to” manuals in recent decades.

Much of the focus has been on consumer participation at the broad systemic levels of service provision, including: consumer rights and feedback, service planning and development, some staff training, and quality improvement.

Much of the published material centres on issues of process or how to do consumer participation, or the importance of gaining support from service providers for consumer participation – but somewhat less about the “content” of what is being learnt through consumer participation or actual achievements in the way services do their work with consumers.

It has been a needed thing and good thing to strive for consumer participation to become a built in feature of the mental health system over time -- but it is because many of these efforts seem to be bearing fruit in many ways, we may now have a chance to try to extend consumer participation into the close-up realm of treatment, care and support.

Today, at this workshop, we have just a brief time to open up an agenda that seems less talked about: primary consumer participation.

 This can be defined as individual consumers/ patients/ service users becoming more involved in their own treatment planning and decision making.

We might describe this as putting the consumer/ patient in control of their recovery and their own life.

Or perhaps, in a more idealistic vision, allowing a consumer to be the chairperson/ facilitator of their own treatment and care “team” including clinicians, carers, selected friends, and advocates.

Some ideas and issues:

Primary consumer participation can involve ideas and issues such as:

Person centred service delivery, where the consumer/ patient’s needs and wants and own ideas of what would help their recovery are given pride of place. This model aims to respect each individual as a person and as far as possible meet people “where they are at” in their lives. It recognises that people’s hopes and dreams are important – and also make for good therapy.

Respect, listening and genuine two-way communication are central to the therapeutic relationship between consumers and case managers/ key service providers, and greatly helps toward recovery.

Increasing the scope for self-advocacy, self-determination, and empowerment, which can greatly enhance therapeutic relationships. (“Nothing about me without me.”)

A consumer/ patient may benefit from being able to suggest what treatments or supports may have helped before, or have heard /or read about helping others.

Advance Directives, (sometimes known as “living wills”) are hoped in the future to be used by consumers /patients as legal/ or personal request documents detailing the types of treatment and care they want -- or don’t want -- in the event of an episode of illness.

This is intended to give people a “say” over their treatment and care while they are well, to be used at another time when they might otherwise be deemed unfit to make decisions, due to being diagnosed as unwell. Consumers may also nominate in an AD another person to make decisions on their behalf where necessary. Developed and legislated for in some countries overseas, ADs are not always legally enforceable, and can be overturned by treating doctors citing grounds of clinical need. However, they can be a useful guide. Advance Directives are at once a consumer participation tool and a consumer rights measure.

Opportunities to make progress towards recovery can be increased through consumers being allowed the “dignity of risk” and being supported while trying new things.

Consumer advocacy could be extended into the “treatment” arena, as occurs in some places overseas. (Sometimes called clinical advocacy.)

Consumer Peer Support Workers may be able to be added to (clinical and PDRS) mental health teams, as happens some places overseas and starting to emerge in some local services now, to add a consumer-perspective membership to treatment and care teams.

Guide for Small Groups:

Making a start with the 48 minutes we have remaining.
Looking briefly at 4 areas of primary consumer participation (knowing there are many more.)

These are the 4 sub topics of discussion for today’s small groups:

  • Primary consumer participation (Participating in one’s treatment planning and decisions.)
  • Person centred service. (Including consumer/ patient’s wants and needs in treatment and support. Strengths-based and recovery focused.)
  • Community based care. (“Joined-up” treatment and support solutions where a consumer uses a range of services within the community, in addition to Community Mental Health Centres. The hope is for more seamless service provision, allowing people more “real life” options, to participate more fully in the life of the community.)
  • Advance Directives. (A mental health consumer/ patient’s document stating in advance, when well, desired treatment, care, and provisions to keep their affairs in order, in the event of becoming mentally unwell – intended to give a person some additional choices in a situation where a they might have otherwise been so unwell as to be deemed unfit to make such decisions.)

Dealing with “negative” issues:

If I may make a suggestion: it seems that when we have discussions at events like the TheMHS Consumer Forum, sometimes there’s a tendency – a pretty understandable one – to focus on the negatives: what’s wrong the with system and what has hurt, disempowered or stigmatised us over time

Today, for the sake of opening up this relatively new, hopefully positive and developmental territory -- about primary consumer participation -- let’s just gently put aside those heavy and emotion-laden issues, which we can revisit in some other forum in another time and place.
Let’s re-frame these apparent “negatives” and process them a few more steps and turn them into problem-solving opportunities, or visioning exercises: Can we imagine how therapeutic relationships/ partnerships, could work in a more ideal world? Sometimes we see glimpses of such a world in the kindness of others. How can we encourage enhanced primary consumer participation in the mental health system?
Can we encourage more caring and effective service delivery by constantly keeping the focus on the highest possible standards – or looking towards the proverbial “light on the hill.”
If we encounter issues that have been difficult for us in the past, but do want to participate in discussions, one thing to try it to “turn the coin around”, and explore how your needs and wants about treatment and support could have been taken into account – and how situations could have been handled better.

This re-framing (or de-construction) of issues can be helpful in many settings and there are many ways to utilise strategic questions (ie,“What would it take to achieve …goal ABZ” type questions,) and then drawing out as much detail as necessary to start to plan for possible change and development.
Today’s workshop format:

Brief introduction to the session and overview of primary consumer participation. Also, a closer look at each of four sub-topics. This segment finished at this point. (12 minutes)

Breaking into small discussion groups. (with assistance from co-facilitator Vanessa Lynne of the Health Issues Centre.) A member of each group to volunteer as scribe, and group discussion to follow from two key questions:

Question: -- How have you personally experienced consumer participation at the primary level?

Question: -- From your perspective what benefits do you see in primary consumer participation? (15 minutes)

One member to report back from each small group: (20 minutes)

Rounding off with a whiteboard summary by Vanessa Lynne of some key themes arising from small group work. (5 minutes)

Then, Allan Pinches draws out some lessons arising from the session as an area of interest for the consumer movement. Also, identifying areas of emerging consensus and how primary consumer participation might be further developed. (5 minutes)

Talking about “where to from here” and some avenues of follow up, which include: (3 minutes)

Discussion about primary consumer participation will continue on VMIAC web forum:

Possible special interest group for people who want to follow up on these issues at the VMIAC (Victorian Mental Illness Awareness Council) at 23 Weston St Brunswick. Tel: 9387 8317.


Part Two:

Primary Consumer Participation: Putting the Consumer in Control

 Reporting back from smaller groups.
Consumer feedback on needs, experiences, and preferences:

Lively and wide ranging small group discussion took place at the workshop on Primary Consumer Participation at the TheMHS pre-conference consumer day on September 4, 2007. More than 85 consumer delegates attended the workshop.

The workshop -- entitled “Primary Consumer Participation: Putting the Consumer in Control” -- was structured within four topic headings, in response to an opening presentation and two strategic questions. The session was designed to devote about 75 per cent of the hour session to interactive discussion and feedback.

I designed and facilitated the session as a long standing Consumer Consultant, in most valuable collaboration with Vanessa Lynne, Training Coordinator of the Health Issues Centre, Latrobe University.

One observation that I made on the day, after monitoring some small group discussion, was that it seemed that for many consumers/ patients/ being able to talk about topics such as person centred services or primary consumer participation, or therapeutic partnerships, could be quite difficult, perhaps because such practices were largely outside of their experience.
In other words, for many people, such enlightened practices were something like a foreign land.
As the groups progressed in their tasks and built in momentum, they seemed to become more able to focus on the more positive side of the equation which dealt with “what if” or “how could things have been done better?” These aspects showed growing potential as participants gradually became more able to express many new and creative and thoughts about what primary consumer participation could develop into.

But to advance future discussions between consumers and service providers and encourage more reforms -- including these and many other positive and pro-active concepts about showing respect for individuals and seeking to maximise consumer involvement in decision making and choice -- all parties around the table will need to embrace a more positive and constructive shared language.

I believe that it will take enormous goodwill, patience, mutual respect, willingness to listen, flexibility of thought, openness to change, emotional maturity, wisdom from life experience, and many other personal qualities, to be an effective partner in positive and genuine change. These are all qualities that need to be nurtured and developed over time.
There is much to be gained from seeking to achieve the highest standards of services; the most caring services; the most effective services in terms of helping consumers to get their lives back on track; pursuing the goals we ourselves choose; and services being truly integrated and inter-connected with organisations and individuals in the wider community.

The discussion feedback of participants is set out below. They appear from the butchers’ paper notes virtually unedited. Hopefully this might represent an “early sketch plan” toward discussions, research and development that may be able to take place in the future on the very promising concept of Primary Consumer Participation.

Primary Consumer Participation workshop: Feedback on needs, experiences, and preferences

Small group discussion notes:

Primary Consumer Participation:

 Our story:

We do need primary care.

We do need support and services to be well.

We have a right to say “what works for me.”

Things we want to be heard can be heard through the consumer group.

 “I felt I had a say in treatment and this helped me.”

“I have a treatment plan but I don’t sign it.”

Counselling and support by the psychiatrist is important

“Have had person centred discharge plan.”

“Consumer knows symptoms best

Consumer given power and has choice and say in what happens.

Helpful when a clinician comes to my house.

Person Centred Service:  Our Experience.

Had say in treatment. Doctor worked with me, didn’t tell me what to do.

Continued care with “shrink” who bulk bills. Developed relationship. Heard/ cared.

Expert can say they don’t know.

Bulk billing [active positive factor.]

Hospital (public) nurses weren’t interested.

Couldn’t access “shrink” (once a week in hospital.)

“Us and them mentality.”

“Defining people by their acute phase.”

Developing relationships patients [a problem area.].

Defensive/ safety focus with nurses.

Devaluing of psych nurses [a negative factor]

Specific training needed – “not just post graduate.”

Respite House, staff not interacting with clients.

Consumer/ Workers come out of the closet, changing the culture.

Community based care:

(PDRS) Psychiatric Disability Rehabilitation and Support.

Consumers supporting each other.

Forums/ meetings/ decisions about what the service/ program provides.

Providing opportunities to work on chosen living skills to improve on.

Specialist mental health services supporting groups that already exist in the community.

Consumers being consulted more in higher up decision making.

Consumers also need to take some responsibility in following up requests with people higher up.

Changing needs and differing stages of recovery.

Advance Directives:

Nominate with someone – carer to make plan & this can be changed at any time.

Specific decisions given to a strong advocate.

Early intervention plan.

Important to get relevant people on side. For example case manager, GP, psychiatrist.

NSW Recovery Plan.

Paper prepared by Allan Pinches

Consumer Consultant in Mental Health

Bachelor of Arts in Community Development (VUT)

In association with, and many thanks to

Vanessa Lynne,

Health Issues Centre

Level 5, Health Sciences 2