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)
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
No comments:
Post a Comment