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 over the past 10 or 15 years.
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)
- 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.
- The Mental Health Legal
Centre is starting a research project about possible implementation of
Advance Directives in
Victoria, and is looking
for consumers and others who
have ideas, opinions, experiences in relation to AD’s to be
interviewed. Telephone:
9629 44 22.
Part Two:
Primary
Consumer Participation: Putting the Consumer in Control
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
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 for Mental Health
Principal
– CommunityScope Research & Development
Bachelor
of Arts in Community Development (VUT)
Mob:
0449132557
PO Box 85 Kingsbury
Vic, 3083
In
association with, and many thanks to
Vanessa
Lynne,
Training
Coordinator
Health Issues Centre
Level 5, Health Sciences 2
LA TROBE UNIVERSITY VIC
3086
Ph (03) 9479 3516 Fax
(03) 9479 5977
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