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: http://forum.vmiac.com.au

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)

allan.pinches@nh.org.au

In association with, and many thanks to

Vanessa Lynne,

Health Issues Centre

Level 5, Health Sciences 2

www.healthissuescentre.org.au

www.participateinhealth.org.au

Pathfinders: Summary article in Health Issues Journal

Pathfinders: New Research on Consumer Participation in Mental Health

By ALLAN PINCHES
(Article first appeared in the Health Issues Journal in December 2005. By 2012 some circumstances may have changed, including some impovements.)

http://www.ourcommunity.com.au/files/OCP/Pathfinders.pdf

A consumer-based research project suggests that consumer consultant projects have been very effective agents for innovation and change in Victoria's Area Mental Health Services - probably more than any individual stakeholder could have expected.

This has been despite considerable barriers, including a severe shortage

of funding and resources, stresses on consumer workers in a difficult role, and problems gaining acceptance within some service cultures.

This article describes some of the findings from this research project.

Aims

The Pathfinders project was undertaken as part of my Bachelor of Arts in Community Development.

It aims to help in building a much-needed information base in relation to consumer participation and consumer consultant-based advocacy work in the mental health field. The project aims to provide something of an overview of progress so far and identify possible action strategies to strengthen and enhance these projects.

Consumer consultants are diverse and multi-skilled workers with personal experience of being consumers (or service users or patients) of mental health services in Victoria.

They are employed to go "back into the system" to facilitate a range of consumer participation activities, aimed at enhancing consumer rights, empowerment and gaining more say for clients in their own treatment,

as well as other consumer led improvements in mental health services.

One of the motivating factors behind this research project was that there had been many and varied accounts of the consumer consultant projects at Victoria’s 22 Area Mental Health Services. These accounts seemed somewhat sporadic, often contradictory, lacked a wider overview, and it was often difficult to draw thematic analysis or learning opportunities from them.

As a consumer consultant, I was determined to help provide a strong information resource for these projects, and it also seemed important for it to be largely consumer-generated.

As with much of the good new models and innovative projects going on in the health and human services field, much of this work tends to go under-documented. The Pathfinders project aims to address at least some of the aspects of this problem.

Methodology

A key factor to this research was having an agency placement with the peak consumer group, the Victorian Mental Illness Awareness Council (VMIAC), which over a long period, has helped put consumer needs and wants on the map.

The project was partly guided by two meetings and further telephone contact with a very experienced Critical Reference Committee comprising five consumers and two service provider staff.

The interviewees mainly emerged from informally "putting the word out" for participants. Semistructured individual interviews were held with five consumer consultants/advocates, two service provider managers, and two senior service staff. A further 11 consumer consultants took part in a

workshop session. Three case studies with three very experienced consumer consultant/ academics were included to illustrate issues involved with working as educators of clinicians, gaining financial control of projects, and equipping consumer consultants with skills for their role.

The research followed a structure, or progression addressing problems and solutions. Participants

were asked:

* to identify achievements in their projects;

* about what factors had helped or hindered the results;

* to speak in more detail about problems, barriers and

constraints encountered;

* to identify possible causes of these problems and by inference try to generate some possible

solutions; and,

* in the event further changes were possible on the ground, what new participation developments or

projects they might visualise or hope for.

The Pathfinders project also included a literature review that made considerable use of consumer generated material, part of which traces the history, achievements and potential of the mental health consumer movement.

The Pathfinders project found substantial and widespread evidence of much progress, and many success stories, over the past decade or so for consumer participation in mental health services, despite a lack of resources and other significant barriers.

Funding and Resources

Funding and support was described as having many direct and indirect effects such as shortage of paid hours for consumer consultants and sitting fees for other active consumers for advisory groups or projects, and low rates of pay. Consumer consultants, who may be part disability pensioners, can find themselves at risk of Centrelink's "poverty traps." Some local projects reported a shortage of necessary office equipment, such as computers, or even a dedicated workspace.

Published materials such as newsletters, books, and flyers were sometimes poorly finished and lacking appeal, due to inadequate printing budgets. However, the research shows how consumer consultants and active consumers made limited resources stretch a surprisingly long way.

Severe funding limitations for VMIAC have restricted its ability to provide support, coordination, training, and government liaison services for consumer consultants in the field, despite many heroic efforts. The research found that many consumer consultant respondents warmly embraced the idea of consumer consultant projects having a central "nucleus" or strengthened support base, which could well be within VMIAC.

A more immediate and critical concern for VMIAC, is the difficulty of accessing adequate funding, especially "developmental" type funding. This has meant that VMIAC often finds itself trapped within a reactive role rather than having the resources to do more agenda-setting research, policy

development or systemic advocacy work. Much of the existing resources and staff time are necessarily used for individual advocacy for consumers having trouble in the system - another chronically undersupplied need.

There has also been a lack of funding for public events, conferences, public relations campaigns, or publications like those of group with more resources.

A number of suggestions came out of the study including:

1. The need for more consumer consultants to be employed in the Psychiatric Disability Rehabilitation and Support (PDRS) services in addition to the larger coverage that currently exists in

clinical Area Mental Health Services. PDRS services also want dedicated funding for this purpose.

2. VMIAC could establish a Consumer Information Library and Clearing House, including on-line access and with enhanced services for consumer or other researchers. At present the large collection of print materials is languishing, with insufficient staff time to look after it.

3. The establishment of a consumer publishing unit that could publish and distribute consumer generated materials. This valuable but often forgotten "grey literature", which often lacked organised circulation and struggled to gain profile alongside the professional publications.

4. The need for services to recognise the benefits of, and seek to provide opportunities for, consumers to be actively involved in education and training of service staff.

Consumer Consultants

The role of consumer consultants also comes with inherent complexities and difficulties, and

they face a number of barriers in their work including:

1. Consumer consultants stretching commitments way beyond allocated paid working hours, putting themselves under heavy stresses that is unhelpful or hazardous to their mental and physical health.

2. Larger allocation of project working hours, larger operating budgets, and sufficient money to pay consumer members serving on committees or special projects may ease this burden and allow for more job-sharing between consumers at local services.

3. Lack of administrative support or adequate office space and equipment can be a problem at some services. Some consumer consultants spoke of time they could be using for specialised consumer-knowledge work being filled with generic tasks..

4. Working in isolation from other consumer consultants and lack of effective support or professional supervision It has been suggested that having consumer consultants working in teams should be the norm.

5. Consumer consultants and representative need access to high quality and relevant training.

6. Consumer consultants being denied access to actual clinical meetings (such as handover or case reviews) can, according to some, hinder their ability to get to know how the services work. If consumer consultants had access to such meetings (even on occasion or with special conditions

attached), this could allow consumers to have a greater "say" in relation to the quality and effectiveness of treatment, and support methods within services.

7. Difficulty gaining direct access to service consumers through mail-outs of surveys - or perceptions that clients might be reluctant or discomforted to be approached in waiting rooms -means that staff, such as case managers, could play a key role in helping build some of these bridges,

and some of them are willing and able to do so. Factors such as these have meant a high attrition rate from these projects over time.

8.  On a more positive note, consumer consultancy can be viewed as a new hybrid form of work, which is becoming much more of a mainstream feature of the way mental health area services manage and provide services. Consumer participation is becoming an increasingly accepted and expected part of service planning, development and quality improvement.

The very role of the consumer consultant, in terms of representing consumers as the prime stakeholder group, can be argued to have a certain built-in credibility - because of shared experiences and knowledge with the subject group - and have made it their concern to gain a studied understanding of some of the issues at hand.

Service Cultures

It is interesting to note that, perhaps contrary to expectations that funding and resources would bethe biggest barrier; the most significant determinant to success in consumer participation projects was identified by consumers as the area of staff attitudes and service cultures. A major determinant of success was said to be:

'..whether services would listen to and recognise the value of consumer perspectives - or constantly act in ways which frustrate the attempts of consumer consultants and reps to try to discuss often difficult issues and get changes made.”

Some consumer consultants spoke of negative or tokenistic expectations or responses towards their projects and a few said the services where they worked seemed "resistant and entrenched" against consumer perspectives, with some maintaining a strong "us and them mentality" and leading to

frustration for consumers.

However, the levels of support varied across Victoria and in probably a majority of local Area Mental Health Service; at least some staff and managers can be considered supporters or "allies" for consumer participation.

Some of the suggested means for making services more consumer-friendly, which come from consumers interviewed include:

* consumers being allowed greater control over the development of their own treatment plans;

* consumer knowledge being used to enhance and widen various debates for improving services;

* consumers and staff being more aware of the consumers' rights within the system;

* services becoming better equipped in providing services to diverse groups in the community,

including people from culturally and linguistically diverse backgrounds, youth, people with dualdiagnosis (mental illness and drug problems) and other needs groups;

* building up over time a capacity for consumers to be involved with actual service provision, culminating in employing consumers working on treatment teams (with a client's informed consent) as Peer Support Workers or Assistant Case Managers, as happens in some services overseas;

* staff adopting more self-reflective practices in communicating with consumers - important in both information provision and interpersonal style; and,

* encouraging acceptance of consumer participation as an integral part of service planning and

operation.

Emerging Change

 

Interestingly, over the ten-year period in which the relationships between consumer consultants and services became closer and more trusting in many localities, projects have been able to become increasingly developmental and work more within the framework of partnership.

This contrasts to the more rights - based approach to advocacy that was, probably understandably, a more predominant mode in the earlier stages. The quality of relationships has varied widely, according to many informants to the study, and there are still areas where there are problems or

fluctuations, and other areas where the work is powering ahead.

The workforce itself has really changed in many ways. One of the standout findings, perhaps the largest trend noted within the research, were the many reports indicating much improved communication and information provision practices of mental health services staff.

Many serviceprovider staff are perceived as being more consumer aware and having more self-reflectivepractices. There also seems to be a much more intensive rigour in terms of intellectual engagement, communication skills, ethical values, empathy, resourcefulness, resilience, perseverance, and more.

There is also some evidence emerging that services which put a high premium on consumer participation - such as the award winning initiative of placing trained consumer representatives on staff selection panels in Melbourne's Northern Area Mental Health Service - may be more likely to

attract high quality, motivated and consumer-aware staff, could produce better morale and an enhanced service environment for both clinicians and consumers, and could more readily move towards a therapeutic partnership, which could also involve carers and other services in the community.

Factors for Success

The research found there were some factors that active consumers and service providers

identified as promoting success in projects. These included the project:

* being presented in ways perceived as constructive;

* making a compelling case for areas of change or improvement;

* having an evidence base strongly tied to consumers' experiences and reflections;

* being readily translated into practical actions, with consumer

service dialogue informing every stage of implementation;

* being pro-active, seeking to bring genuine improvement in

services and better outcomes;

* being respectful of persons, and the contribution all stakeholders can make, avoiding stereotyping others' positions;

* aiming to build communication and new understandings, rather than being unduly adversarial,

hyper-critical and blaming;

* staying open to new ways of conceptualising issues, allows thinking "outside the square," going

"back to the roots" of issues and rebuilding from the ground-up;

* being conducive to building partnerships for creatively working towards change; and,

* building on and enhancing strengths, while seeking to minimise problems in the system and

resultant problems.

Beyond that, the effectiveness of consumer participation activities largely seems to revolve around:

* the quality and authenticity of the knowledge emerging from consumer experience;

* the ability of consumer representatives to draw parallels, demonstrate relationships, and extract principles and practical strategies for change and improvements within service provision; and

*skilfully applying the consumer knowledge through various processes involving problem solving, gap and opportunity identification, development of new and more effective service models, treatment methods, community linkages, education campaigns, community development projects, etc.

Conclusions

One finding that has crystallised for me is just how well accepted consumer participation programs have become, how deeply influential they have become in service planning and development, and the whole culture within many services.

An important part of this is to have a number of active consumers on hand who become skilled in making problem and solution analyses in virtually any meeting or forum they find themselves.

It was also clear that the consumer consultant model could have wider applications across other types of services, - such as advocacy within disability, health, and primary health services.

Many consumer advocates in the mental health field are proud of the achievements so far in developing the consumer consultant model and how this consumer participation, combined with other elements of movement building, could make a difference within policy making forums, in services, in communities, and people's lives.

Like so many mental health active consumers (including people doing many and varied roles in the consumer movement) I am proud of the way that people with mental illness were working away at campaigning for social change, using new methods and strategies that could be adapted by other groups.

As a result of this research, a report, "Pathfinders - Consumer Participation in Mental Health and Other Services: Evidence - based Strategies for the Ways Ahead" was written.

The report identifies 18 key result categories in consumer consultants projects and lists 55 action strategies for strengthening consumer participation projects throughout Victoria. Other sections seek to identify factors believed to have promoted success; identify barriers and constraints facing consumer participation projects and their possible solutions; and provide a short history of the consumer

movement.

* To order copies of "Pathfinders - Consumer Participation in Mental Health and Other Services:

Evidence Based Strategies for the Ways Ahead" can be obtained free online at http://www.ourcommunity.com.au/files/OCP/Pathfinders.pdf

I undertook this project in part fulfilment of my Bachelor of Arts in Community Development at the Victorian University of Technology, from which I graduated in 2004. I have been an active consumer for more than two decades and a consumer consultant for eight years. As a former

journalist, I have become a well known writer and speaker on mental health consumer issues; many of my articles can be found on the blogspot which has delivered this article to you.

© Allan Pinches 2005. This article appeared in the Health Issues Journal in the Summer 2005

edition.

Pathfinders: Consumer participation research

CLASSIC CONSUMER RESEARCH:

PATHFINDERS:

Consumer Participation in mental health and other services: Evidence based strategies for the ways ahead.

Now download for free
at Our Consumer Place: 


http://www.ourcommunity.com.au/files/OCP/Pathfinders.pdf

An essential research report from Allan Pinches, Consumer Consultant for Mental Health, for anyone with a vital interest in consumer participation in mental health and other services:

• Achievements of mental health consumer participation: including 18 key result areas.
• Factors which have promoted the success of the many local Victorian projects.  
• Barriers and constraints -- identifying key problems such as: resourcing issues, systemic barriers, impacts of service cultures and environments, personal strains on Consumer Consultants in often difficult and demanding roles, and expressed needs for better resourcing and enhanced support systems.  
• Practical problem solving examples.  
• More than 55 suggested action strategies for a major strengthening of consumer participation projects.  
• Case studies on several outstanding and innovative consumer participation projects.
• Rich contextual quotes highlighting major themes from Consumer Consultants in interviews and workshops, and some observations from service providers. http://www.ourcommunity.com.au/files/OCP/Pathfinders.pdf

Email: allan.pinches@bigpond.com.au

            allan.pinches@yahoo.com

Spirituality a Missing Link in Psychiatry.

by Allan Pinches


Psychiatry is marked by its almost total disregard of spirituality, in considering the mental health of individuals.

As mainly agents of psychiatric orthodoxy, psychiatrists do us no favours by dismissing spiritual factors from the equation. The standard medical model of mental illness is based on rather mechanistic and reductionist theories about physiological, biochemical and genetic factors, rendering us "biochemical units in a state of dysfunction" -- and where they do consult psychology, ego-based psychological theories devoid of any concept of "soul" predominate.

The imperatives and needs of the soul are left unattended. Perhaps these things do not appear tangible enough for some psychiatrists to bother about and perhaps they are difficult for them to access because it requires a high degree of experientially based understanding, personal development, empathy, spiritual insight, and "talent" to factor in matters of spirituality and soul in a therapy setting.

What a bitter irony that the word "psychiatry" is derived from the Ancient Greek word "psyche" which literally meant "soul." With a few rare and honorable exceptions, psychiatrists can hardly be described as Doctors of the Soul.

Mental illness experiences and breakdowns often give a greater relevance and immediacy to the person's own spirituality, whatever form it may take. A breakdown can compel us to do the necessary spiritual work, nurturing our inner world, and honouring the Unconscious, as the source of great creative ideas and energies. Spiritual factors may be involved in the development of the condition, how people will experience and cope with it, and what sort of recovery they can expect to make.

I believe there is a need for more holistic and empowering approaches to treatment, with a restoration of the proper place of "therapy" programs and one-to-one counselling, rather than medication being the first and only resort.

Some alternative healing approaches such as Reiki or other massage methods, meditation, affirmations, and creative exploration therapies such as drama for self awareness, art, music, journal and creative writing, reflective story telling and creative voice and movement can have a very positive effect on a person's mental wellbeing.

Widest definition of spirituality

In discussing the spiritual aspects of mental illness, I am using the widest possible definition of the word spirituality. Basically this embraces matters of the spirit or the soul and our personal understanding of and relations with God, the Universe, or the Higher Self. While I borrow key ideas from many areas, I am not advocating any particular religion or code of beliefs. I believe there is wisdom to be found in the whole diversity of spiritual paths. An essential distinction between spirituality (as an experience) and religion (as a set of beliefs), is the personal and individual nature of one's spirituality.

Healthy spirituality infers to me a sense of wholeness, wellbeing, being comfortable with life and its challenges, right actions, and having love for ourselves and others. Afflicted spiritual aspects include low self esteem or self hatred and a poor orientation - or lack of love -- for ourselves, others and the world.

A breakdown, far from being the "end of the road" it may seem in the darkest days, can be a catalyst for change and development in our lives, possibly opening out to new ways of being in the world.

A key message I want to convey is that far from being some meaningless "mishap," a breakdown is intrinsically bound to the whole questions of meaning, purpose and identity.

It also cannot be divorced from socioeconomic factors, the stresses of modern life, personal history, class, education, occupation, race, religion and a host of other factors. The glaring lack of true "community" in today's social reality is, I believe, a major factor in the upswing in the incidence of mental illness seen in recent years.

Living in a mass-society where stress is endemic because of irrational and self-defeating practices based on competition, rugged individualism, masculinist aggression and officially encouraged greed and materialism. Such a social environment affords little opportunity for self-exploration, contemplation and development of a true individuality. Rather than the "luxury" these things are often held to be in our system, they are vitally important for fostering optimum mental health. Treatments and rehabilitation programs should reflect this principle.

Nowadays there are very few places of retreat or genuine sanctuary for people to go to when they need time out, and spiritual reflection. It seems that many who would have once gone to a monastery or on a pilgrimage, now end up in virtually the only available "sanctuary" provided today, the psychiatric hospital.

It seems a common pattern that many people's breakdowns follow periods of intense spiritual exploration and attempts at self realisation. This seems to occur far too often to be overlooked in considering the nature and causation of mental illness, and discovering workable, individualised approaches to achieving recovery. In fact some psychiatric practitioners seem to believe that a strong interest in spirituality is in itself a symptom of mental illness.

Spirituality now a divergeant path in an increasingly complex world:

There has been an enormous diversification of spirituality over the past five decades mandated by a tidal wave of scientific, technological, political, social and economic rapid change. There are many dilemmas relating to values and morality, and more sophisticated debates about issues which were once perhaps too narrowly and simplistically defined. Changes in spiritual modes have brought opportunities for personal spiritual growth and realisation, but also bring many possible complications to individual lives, particularly the young, and have created an atmosphere of spiritual confusion. Many people have been painfully caught in the middle of a clash of paradigms, western materialism versus (broadly Eastern) spiritual values.

The spiritual confusion that marks the final years of the 20th Century affects every aspect of our lives.

We increasingly sideline organised religion in today's world, making way for a new "rationalism." While there may be some positive aspects to this, we may have lost a large part of the moral and spiritual resources organised religion provided. Where there was once "faith" in a higher power, "certainty" about life's meaning and sacredness, and a strong belief in the power of love to overcome problems in the world, there is now growing secularism and something of a spiritual vacuum.

Increasingly this void is leading to a growing interest in alternate spiritual paths including Eastern religions, ecologically based alternative philosophies and a burgeoning Spiritual Supermarket running the gamut from "born again"Christianity, tele-evangelism, spiritualism, to New Age philosophies, and "mind powers."

While there are "New Age" teaching systems of genuine value and of real help, there are also many blind alleys, false prophets, and mind bending "trips" which can mislead people and prevent learning of true and authentic spiritual knowledge.

The rise of Christian fundamentalism in recent years has also brought problems, with rather simplistic solutions being promoted for complex and multi-faceted problems. The Bible writers could not have been expected to anticipate the conditions of the modern world, and fundamentalists tend to stick to literal interpretations of scripture, creating problems with applying these teachings in today's infinitely more complex times. However, many Christian principles and the Gospels still have much to offer.

All of this has enormous impact on the psychological wellbeing of individuals. It often occurs to me that the people most markedly affected also tend to be those who have the most highly developed social consciences and genuinely care about the welfare of their fellow humans.

It takes a long time for the person to learn to navigate their course in a supposedly "rationalist" world system which dismisses spiritual endeavour as worthless and even misguided or "crazy." There are many pitfalls, disappointments and obstacles in this world for the spiritually inclined. There can be the dual problems of not only being misunderstood by others but also not clearly understanding ourselves. Confusion, breakdowns, highs and lows can follow, often leaving the person in a "nowhere" state for some time.

Major experiences and many setbacks on the "road toward enlightenment":

Many spiritual seekers search, work and struggle towards the enlightenment, the desire for which animates their hearts and minds. For many people this becomes the main preoccupation in life, a burning ambition, and they can seem strange and different from their friends and family. This can be a source of conflict in some people's lives, and lead to all sorts of twists and turns in life's road.

Spiritual exploration often involves a period of "emptying" or melancholy, when one is approaching a big spiritual experience and some people can't handle this stage because of possible lack of support or guidance at this crucial time. Some people "break down" at this stage.

It seems to be a recurring theme common to all religions that spiritual transformation can only happen after the person has "died to their old self" and become "reborn" into a new, transcendent awareness. Essential to these teachings about a metaphorical "death" is the relinquishing of ego-based attachments like materialism, selfishness and manipulation to gain power over others, replacing these things with loving compassion. Some spiritual teachers say the ego or I-self must be eliminated altogether to allow the person to identify with a Higher Self, which is often said to be "at one" with the Universe.

This metaphorical "death" process can be extremely painful, often leading to what has been described as the "long dark night of the soul." Part of the problem, I believe, is that our whole social, political and economic systems are based on ego demands and gratification, and attempts to subjugate the ego do not "gel" with the prevailing system. Many spiritual seekers run into severe problems, obstacles and conflicts. This is not to say that these teachings are invalid-- they can be very helpful and enlightening-- but it must be acknowledged that it is very difficult to live by Eastern teachings in Western capitalist societies.

Some people get lost in the sensations of spiritual experiences, and seek after yet more sensations. This is regarded by genuine spiritual teachers as a mistake. They would point out that the object of spiritual endeavour is not in having a wonderful ego-trip. Unfortunately many, if not most seekers go through a stage where their egos become inflated by the new experiences, as the ego strives to take all the credit for everything that is happening.

Perhaps some people have spiritual experiences such as an "awakening" or "Satori" which their mind and body are not adequately prepared for and become "freaked out" by it. This can happen particularly if people are getting most of their learning from books, without personal guidance by a teacher, who would usually oversee the person's preparations for spiritual experiences, and carefully guide the person's progress.

Some people get lost in the complexities of religion and confuse archetypal ideas with personal reality. So ideas like the "Christ Consciousness" being potentially available to anyone, or God dwelling "within" can be distorted into mistaken beliefs, that one is, in fact, the returned Christ, or Mother Mary or God. Sometimes this can be explained as a self-consolation for a terrible life, feelings of inferiority and insignificance, or wishing and hoping for Heavenly justice in a world of seemingly endless pain and suffering.

Or the person may break down after some sort of life trauma, such as a job or relationship setback, which sharply derails spiritual work when they are in a vulnerable state.

Some people on the spiritual path do not pay enough attention to the need to remain "grounded" during their meditation and exploration, and could lose touch with consensus reality or relate so closely to alternative paradigms that they sound "mad" when they attempt to explain themselves.

Use of illicit drugs, which sometimes accompanies some forms of spiritual exploration can also add to the person's vulnerability to mental illness.

Many, but certainly not all, mental illness experiences can be attributed to "spiritual crisis" situations.

Mental illness, spiritual crisis and learning life lessons:

Perhaps it is better to regard a breakdown as part of a "healing crisis" rather than an illness in its own right. Many lessons will be learnt and wisdom gained in the "deepening" processes of the soul, which often follow a breakdown.

We ask ourselves questions about:

• how to love and be loved;

• loving ourselves;

• our relations with the Infinite;

• whether there is a God and what are our obligations to it, and our expectations of it;

• the meaning and purpose of life;

• discovering our real interests;

• following our soul urges, rather than what we are told to do;

• setting priorities of what things are most and least important to us;

• how we can relate meaningfully and get along with others;

• helping ourselves by helping others;

• how we can find true happiness;

• how to find peace;

• how we can be true to ourselves, in the ways we live;

• right actions as usually the most practical and productive behaviour;

• and how to go beyond the conventions of a manifestly sick social order.

Spirituality has a great deal of relevance to all these sorts of questions.

It seems to be a recurring theme in most eastern religious systems that one can experience a transformation or raising of consciousness, to a new, transcendent awareness, sometimes called Cosmic Consciousness. A Cosmically Conscious person is said to be "at one" with God or the Universe and in a state of full enlightenment. The main object of such enlightenment is said to be to serve humanity.

There may be occasional new flashes of insight. Soon there are "peak" spiritual experiences, which involve a deep sense of peace and wellbeing. Later, after much practice and reflection, there may be a spiritual awakening, where one feels "touched" by the divine, with an inner explosion of love and bliss. The new initiate experiences a powerful and euphoric sense of oneness with the Universe and an immediate connection with all living beings. Such an experience, which can come on suddenly, is sometimes called Satori, and is regarded as a foretaste of Cosmic Consciousness.

For some spiritual seekers a key realisation has been that social change starts from within each individual and then radiates outwards to others. Rather than religious ideas being used as a dogmatic means of social control, the new spirituality can serve to liberate the person and empower him or her to find loving compassion, meaning, satisfaction, pleasure and happiness in their lives.

Compare this to the old fashioned religious teachings which encouraged feelings of guilt, frowned on pleasures, turned sexuality into a "sin", promoted fears of God's wrath and hellfire and brimstone horror stories, and taught that life, with its sorrows and inequities was something to be endured until, after death it would all be made right by going to heaven. Life has a way of teaching us that heaven and hell are not so much places as states of mind in the here and now. Living and thinking creatively opens up many options for creating our own kind of personal world, which we can share with others.

With a breakdown, there is often a dis-integration of personality and confusion in the thinking processes, in the early stages. All the ingredients of identity, meaning and purpose go back into the melting-pot, and a longer "ferment" stage follows. In a long process much information and experiential learning grow into a new understanding of life. This understanding is often of a more fundamental nature: "I am human and I have unconditional worth." In computer parlance, we can describe the process as the data being gathered, processed, re-integrated, and a new synthesis emerging on the screen.

Over time, a new synthesis can develop in us, a sense of true self can build up, wisdom can grow, and perhaps a realisation that the world's priorities need not necessarily be ours. That we can be ourselves and pleased and proud at that. The seeker is then likely to justify his or her life's quest with the argument that spiritual work is just as valid as any other form of work or vocation, and that society and the planet needs its thinkers, dreamers, poets, artists, writers and seers of visions.



An afterword for mental health workers and other helpers:

Spirituality is inevitably both a "minefield" and a source of strength and inspiration to many mental health consumers.

This demands creative responses from support workers, case managers or doctors, who may be required to help reverse some of the damage of some consumers' over-identification with the "dark shadow side" of religion, sometimes arising our of early traumatic religious "abuse" experienced in families of origin.

Some consumers become fixated on concepts such as fundamentalist "hellfire and brimstone" scenarios, eternal damnation and the threat of a terrible Doomsday at any time now, or may feel compelled to "take up their own cross" and try to function in a harsh secular world while living out roles of religious figures. This is not conducive to a smooth passage through life, to say the least.

Some people become extremely depressed because of a delusion "bubble" bursting, as they return to a more everyday type of consciousness, but find the world and its problems all too horrible compared to the shining heavenly utopias of their former "waking dreams" that doctors call delusions. Some sufferers can spend years "trapped between worlds."

Some ways for spiritual seekers to avoid mishaps:

There are sometimes mishaps in spiritual searching, and the mental wellbeing helper needs to constantly highlight concepts such as:

• the need for having proper instruction from a recognised teacher, in spiritual learning. Not just books, which can be a haphazard way to learn;

• preparing the mind and body for spiritual experiences;

• the need to remain "grounded" while following spiritual or meditation practices, to avoid "spinning out" or losing touch with the common world; and,

• the concept of the need to strive for balance in all things, as a way of flowing with, rather than against, the basic tendency of nature and all natural systems to seek to return toa state of balance.

Indeed these imperatives are important in the healing process itself..

People going through mental suffering need a lot of very sensitive support and gentle guidance. It is important for workers to try to help the person reduce the damage of "afflicted spirituality," and start to heal, without interfering with destroying the underlying good and unifying aspects spirituality can offer.

This is very tricky, and may involve a gentle, long-term process involving a progressive re-orientation to approximated "consensus" reality and encouragement that the (so-called) "real" world is not such a bad place really, and try to instill hope that the person WILL gradually re-acclimatise to the everyday world. (Not that anyone would want recoverers to turn around and imitate the many desensitised and numb "normals" who calmly munch on their dinners while the world continues its orgy of death and destruction on the nightly TV news.)

Generic spiritual concepts can be helpful:

A useful frame of reference for support workers is a very wide and generic version of spirituality that recognises and respects the diversity, and often individual flavour of religious beliefs.

It is possible to work with concepts such as;

• an often eclectic comparative religion studies and mythology;

• the Universe;

• a Higher Power, which can reside both within and without;

• the importance of respect for others and other creatures.

• nature's bountiful beauty, healing powers, wholeness, and imperative to seek balance.

• notions of the common good as defined by traditional and International conventions;

• the practical and pragmatic good outcomes of right actions, as well as ethical benefits;

• the need many people have for a personal God and creator who loves them and has promised them Heaven after this life, if they live good faithful lives.

• Another key idea is philosophical stance of believing in the essential goodness and nobility of the human spirit, at its best.

Folk stories and fables, or having creatively facilitated "story telling" sessions about our lives or our ancestor's lives, or even an imaginary life we would like to have, can also be very rewarding for consumers. Such approaches tend to stimulate individuation processes and reinforce ego strength, which are often weakened in mental health consumers.

Allan Pinches is a former metropolitan newspaper journalist and a mental health consumer consultant.

This article previously appeared in 1996 on a previous website by the author, and highlights from the archives from 1996 to 2011 will be transferred to this blog.