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Working with Consumers

Mark McMahonGrant Sara

NSWIOP Career and Consultancy ModuleNov 2010

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Purpose and overview

• Working with consumers in non-clinical roles1: Background knowledge

2: Specific issues and challenges

3: Practical tips – what to do and what to avoid

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Introductions

• Mark

• Grant

• This collaboration

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Part 1: Background knowledge

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Consumer Time: (Consumer Time: (notnot to scale) to scale)

Consumers asInpatients

Consumers during times of Wellness(episodic illness)

Consumers as Outpatients

The MHS

Question: what can consumers do during their times of wellness, in conjunction with the MHS, to improve the time consumers spend as patients? If the MHS fails to do this are they neglecting a resource?

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Typical Characteristics of MHS Consumers*

• While it is said that one in five Australians have mental illness at some time, you will not encounter such a diverse group at public MHS services.

Often chronic MH problems, declined and “fallen” into the MHS as a last resort. (Australians do not have access to a comprehensive range of PPEi services; consequently you don’t get a Geoff Gallup or Joey Johns in groups identifying as ‘consumers’)

initially they don’t have many things better to do (confined by a most complex social security system and 8 different Health depts - gaps)

Have a lived experience: survived difficult lives to survive past age 18 - all this has value. The challenge is to enhance the positives and build a pathway out……. *initially

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Recovery Values:

• Key Concepts of Recovery**• Hope (resilience, unconscious competence)

• Personal Responsibility (not dependence)

• Education (incl. common language)

• Self Advocacy (self-directed)

• Support (own networks, connectedness)

• ** “Recovery” implies a continuous (but non-linear) pathway rather than a set of disconnected outcomes. Consumer view: would not refer to recovery as a “model” which implies medicalisation.

Consumers tend to view mental health as much bigger than the mental health system. Involuntary visits to the acute care ward are experienced as traumatic interferences to one’s life, so the concern is about getting a life back (and not getting sick again).It’s difficult to find a (sane) human being who wants to be sick and unhappy.

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History of consumer involvement

• - overseas experience (SAMHSA in USA)

• - Australian experience:

• Book “Partnership or Pretence”

• Recognition that consumers do get well

• How did this start, how implemented, how evaluated?

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Consumer participation

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Consumer participation

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What’s in it for me? Consumer motivations for participation

• for consumers,

• for professionals,

• for system/society

• Refer characteristics of commonly encountered consumers (above)

• At a low socio-economic level (nothing to lose) so more inclined to make “the Emperor has no clothes” statements

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Types & Models of Consumer Participation • Range/ type of consumer involvement: consumer advocates consumer representatives (elected) consumer support/ peer workers (goal setting, warm lines, etc) consumer consultants or appointees (often independent) consumer Co-ordinators/Directors consumer liaison workers (to community/ NGO)

(taken from roles endorsed by AMHCN** for National Relapse Prevention Plan 2004)

• spectrum of models: activity driven – include consumers on committees communication driven – improve relationships with consumers, maybe using

consumers as trainers feedback – actively seek feedback from past/present consumers advocacy – consumers promote/share rights of consumer individuals/groups social inclusion – removing a threshhold impediment/ promoting confidence accountability - plan, implement and evaluate at executive level: do reports (adapted from IOP course notes by A.Prof. Margaret Tobin 2005)

** Australian Mental Health Consumer Network Inc.(now defunct) – funding approved for new model

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Psychiatrist roles in working with consumers in ‘consumer roles’

• Diverse roles …• Committees

– Co-members– Chair / member

• As service manager– Support– Employer– Leadership, resources– Working with advocacy groups– In service partnerships and contracts

• Many others …– Consumers on interview panels

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AUSTRALIA: – National Policies and Practices recognise the existence of consumers as MHS stakeholders and invite them to

take up roles within or allied to the MHS

During times of wellness, are there more positives than negatives for consumers having a role in/ allied to the MHS?

No. Since the MHS is perceived to be primarily about illness, eg, minimising symptoms, so it cannot help consumers develop wellness skills.

Yes. But does that mean consumers see themselves as (a) Participating in the system, ie, another variety of staff…..ORas (b) Policing the system, ie, peer support workers, or acute ward advocates?

A Third Path?Consumer run NGOs which contract with the MHS, thereby removing industrial, OH+S, training and discipline issues from the MHS

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Legal requirements and standards

• In reality, few specific legal requirements as to consumers on committees, etc

• UN Disability Rights now to be legislated

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Other literature / further reading …

• Browne, G. & Hemsley, M. (2008) Consumer participation in mental health in Australia: what progress is being made?, Australasian Psychiatry, 16, 446-449.

• Stewart, S., Watson, S., Montague, R. & Stevenson, C. (2008) Set up to fail? Consumer participation in the mental health service system, Australasian Psychiatry, 16, 348-353.

• Nestor, P. & Galletly, C. (2008) The employment of consumers in mental health services: politically correct tokenism or genuinely useful?, Australasian Psychiatry, 16, 344-347.

• Gordon, S. (2005) The role of the consumer in the leadership and management of mental health services, Australasian Psychiatry, 13, 362-365.

• Lloyd, C. & King, R. (2003) Consumer and carer participation in mental health services, Australasian Psychiatry, 11, 180-184.

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Part 2: Specific issues and challenges

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Psychiatrists and organisations

• Professional role critical, but not universal• Any role in organisation / health system requires

broader models– Eg Bolman and Deal “Four Frames”: Structural,

Human Resources, Political, Symbolic

• Many of the challenges of organisational work with consumers are a subset of broader issue of working within a complex system

• Professionals, consumers are just some of the many voices

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Focus

Recovery

-versus- Symptoms/illness

RECOVERY MODEL MEDICAL MODEL

Distressing experience Psychopathology

Biography Pathography

Interest centred on the person interest centred on the disorder

Pro-health Anti-disease

Strengths-based Treatment-based

Experts by experience Doctors and patients

Personal meaning Diagnosis

Understanding Recognition

Value-centred (Apparently) Value-free

Humanistic Scientific

Growth and discovery Treatment

Choice Compliance

Modelled on heroes Underpinned by meta-analysis

Guiding narratives Randomised control trials

Transformation Return to normal

Self-management Expert care coordinators

Self-control Bringing under control

Personal responsibility Professional accountability

Within a social context Decontextualised

Table from:

Roberts, G & Wolfson, P (2004) The Rediscovery of Recovery: Open to All.

Advances in Psychiatric Treatment, 10, pp. 37-49 (both authors are consultant psychiatrists)

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Language• “Consumers, clients, customers, patients …”

• Does it matter?

• One view– People have a right to own what they are called – Respect is not a “zero sum” process– Language does reflect thought and attitude– In most situations “person” is the best word

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Participation or Ownership

• ‘Consumer Roles’ not permanent stigmatic ‘consumer’ label

• NSAMHS Consumer Policies and Structure (handout) Note covering memo

• Consumer advocates vs. Official Visitors (ie, “warm” vs. “cold” contacts)

• Consumer NGO’s ?• Consumers don’t like having their views

trivialised

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Support

• Tokenism?

• Set up to fail …training, preparation and support first? (train then place vs. place then train)

• Independence vs. employment/contract- new Local Health Network Governing Councils emphasize ‘independence’ (see website)

• Consumers move on after 2-3 years: succession

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Representation

• One v many

• Under-represented groups (18-25’s)

• How representative are any of us?

– “The loudest voices are not always the right voices regardless of whether they are the expert providers or the expert users.” (Margaret Tobin)

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Managing complex relationships and boundaries

• Major problems very rare

• Dual relationships: clinical and organisational contact with a person and their family

• Confidentiality

• Multiple responsibilities

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Counter-transference• Important NOT to bring clinical frameworks

into organisational roles, however …

• Each psychiatrist can represent other/past psychiatrists, all past and traumatic experiences within the system

• Can be a mismatch between your personal values/aims and how you are experienced

• Intensity of negative feelings can be confronting and unexpected

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Part 3: Practical issues

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When to seek a consumer representative

See: National Standards for Mental Health Standard 3:

- Consumer and Carer Participation: Consumers and carers are involved in the planning, implementation and evaluation of the MHS. (handout)

Other Standards also cover consumers

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How to seek a consumer nominee

• NGOs, advertising, word of mouth, relative? (word of mouth tends to be preferred

quality assurance)

• NSW Consumer Advisory Group website has large geographical list

• National Consumer/Carer Register – specialist, State & Federal issues

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GAP Now/ …….

• Now...Consultation not participation• Edmond gets a call from someone at the Health

Department about a meeting next week.They are setting up a committee to look at priorities for the future and they want a consumer on the committee.

• Edmond is the only consumer on the committee.The health people use a lot of abbreviations and terms that no one explains. He feels anxious about talking and thinks the others will not take him seriously.

• Edmond stays on the group and they identify priorities for the future.The priorities are sent out for public comment but there is not much time allowed.

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GAP ……the Future• NSW Health and the community working together• Edmond is representing his cardiac support group on a Department

committee along with three other consumer representatives.• Before the first meeting Edmond gets a call to say that the

Department will pay for his travel costs and day respite care for his wife who was diagnosed with Alzheimers last year. He is asked if there is any other help he needs to take part in the meetings like meeting papers in large print. Edmond takes part in a training program for consumer representatives.

• At the meetings the Chairperson interrupts people who use technical language and asks them to explain. The Chairperson asks the consumer members for their views on issues discussed.

• The committee identifies a number of priorities but agree that it is important to see what the public thinks. They plan how to get the views of different people in the community and Edmond is able to contribute a lot of information about reaching people in their homes. After the consultation process, the future priorities are reviewed and changed.The final priorities are widely publicised and Edmond is asked to be involved in the evaluation of their work.

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Typical Consumer Meeting Agenda• Consumer Network Steering Committee, Northern Sydney AMHS• Monday 21st June, 2004. Rotary Lodge, RNSH Campus, St. Leonards

• Agenda

• Welcome to Liz Kristensen – Acting Area Deputy Director (by invitation)

• Welcome - round of names, personal goals for this meeting • Apologies• Minutes of Last Meeting

• Area Committees Reports: 10.05am – 11.15am– Meeting with Area Director re Connor Report– Area Mental Health Executive Report– Policy Committee Report – (including Consumer Advocacy Policy for discussion and endorsement).– Other Committees Reports

• BREAK – 10 Minutes 11.15am – 11.25am

• Standing Items: 11.25am – 11.50am– Budget Report– Sector Network’s reports– Consumers’ Issues across the Area: incl. K-10’s– Review of Reps ability/inability to attend next round of Area Committees, and other standing tasks

• BREAK – 5 Minutes 11.50am – 11.55am

• Further Discussion on the External Review Report 11.55am – 12.10pm• New Business: 12.10pm – 12.25pm • Meeting close at 12.25pm – early due to others using the Venue.• Date of Next Meeting: Monday 12th July, 2004 from 10am – 12.30pm at Rotary Lodge, North Shore Hospital.

Note definite structure, recognition and support aspects and general level of trust and respect

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Handling differences and disagreements

• Be prepared……• Consultation isn't always agreement: “Hai!” • Conflicts: identify interests first• Social contracts, advance directives• Myths – consumers: overly violent, have to

be cured to work.• Myths - you can tell what a psychiatrist

prescribes by the colour of his/her pen

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Support when someone’s personally unwell 

• DOH Memo GL2005_043: “Consumers Representatives - Working with Consumers in NSW - Health, Guidelines for Secretariat” (note: not a M H document) http://www.health.nsw.gov.au/policies/GL/2005/GL2005_043.html

• Is it possible just to let some time pass?...

• Things usually occur leading up to a person being noticeably unwell….

• Supported by local consumers/ have support system in place?

• Are there arrangements to mitigate?

• How good’s your conflict resolution toolkit?

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Consumer Tools and Training• “The Kit” (advocacy) sponsored by MHCA

• WRAP groups – before relapse; overcoming barriers to participation and improvement

• Peer support/ Peer worker training by CAN Inc. (Federal suicide prevention funding)

• NSW Mental Health Consumer of the Year Awards at Parliament House (Eli Lily)

• IOP Consumer Advocate/ Representatives Training – 3 days early-bird rate $150 - bargain!

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Conclusions and questions

Finding Consumer Reps – links

NSW Government Action Plan (‘GAP’), Partners in Health - Sharing information and making decisions together (Summary – handout)

Further details at: http://www.health.nsw.gov.au/mhdao/participation.asp#para_2

NSW Consumer Advisory Group website: http://www.nswcag.org.au/page/consumer_networks__consumer_workers.html

National Consumer/Carer Register http://www.mhca.org.au/the-national-register-of-mental-health-consumers-and-carers (large spectrum of ability)