2012 v4 1

Mark McMahonGrant Sara

NSWIOP Career and Consultancy ModuleJune 2012

2012 v4 2

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

2012 v4 3

Introductions

• Mark

• Grant

• This collaboration

2012 v4 4

Part 1: Background knowledge

2012 v4 5

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?

2012 v4 6

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’)

Consequent example: lacking in computer literacy

Initially 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

2012 v4 7

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?

• To get project and compliance approval consumer participation often required

2012 v4 8

Consumer participation

9

Types of participation

= 64 fte nationally

2012 v4 10

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

2012 v4 11

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)

** Australian Mental Health Consumer Network Inc.(now defunct) – new model in process

• 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

2012 v4 12

Psychiatrist roles in working with consumers in ‘consumer roles’

• Diverse roles …• Committees

– Chair / member – Co-members

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

• Many others …– Consumers on interview panels, community projects

Recovery

• Currently many issues in relationship between services and consumers being framed in language of “recovery”– Recovery movement– Recovery goals– Recovery orientation

• National Recovery Forum Jun 2012• Systematic review

– LEAMY, M. P., BIRD, V. B., LE BOUTILLIER, C. M., WILLIAMS, J. M. & SLADE, M. P. P. (2011) Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis, British Journal of Psychiatry, 199, 445-452.

13

2012 v4 14

2012 v4 15

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. (The mental health commission concept may make this a community attitude) 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.

2012 v4 16

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

2012 v4 17

Legal Requirements & Standards

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

• UN Disability Rights now to be legislated

- consumer ideal: National Standards for MHS should become law.

2012 v4 18

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.

2012 v4 19

Part 2: Specific issues and challenges

2012 v4 20

Psychiatrists and organisations

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

• 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

• Professionals, consumers are just some of the many voices

2012 v4 21

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)

2012 v4

Patients

What’s in a name ?

Consumers

Clients

Customers

Service usersSurvivors

People with Lived Experience (of Mental Illness)

Schizophrenics

LunaticsInebriates

Some arguments …

ONE VIEW

•Language reflects attitude•“Right” name depends on context•Clinical v other relationships•Individual v collective relationships•People have a right to own what they are called •Respect is not a “zero sum” process•In most situations “person” is best word

23

CONSUMER

•Historical baggage•Power relationships•Medical focus•Illness focus•Preference + Choice

PATIENT

•Political correctness / managerialism•Reframing relationship in market terms•History, trust•Denial of illness•Discrimination •Preference + choice

ESSOCK, S. M. & ROGERS, L. (2011) What’s in a Name? Let’s Keep Asking, Schizophrenia Bulletin, 37, 469-470.

DICKENS, G. & PICCHIONI, M. (2011) A systematic review of the terms used to refer to people who use mental health services: User perspectives, International Journal of Social Psychiatry, 58, 115-122.

AUSTRALASIAN PSYCHIATRY 2012 - several articles and response

2012 v4 24

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 ? PhDs at NSWCAG

• Consumers don’t like having their views trivialised

2012 v4 25

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

2012 v4 26

Representation• One v many• Under-represented groups

– Cultural and language– Age extremes– Brief v longer contact– Degree of disability– Positive v negative experience of services

• 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)

2012 v4 27

Managing complex relationships and boundaries

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

• Major problems are very rare

• Confidentiality and boundaries important

• Multiple responsibilities

• Important to be balanced: professional but human

2012 v4 28

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

Consumers and carers

• Overlapping interests: not always aligned

• Just as in life, relationships can be complex ! Real tensions at times …

• Tips– Important to work with consumers AND carers– Don’t see carers as speaking for consumers– Expect to negotiate different perspectives

2012 v4 29

2012 v4 30

Part 3: Practical issues

2012 v4 31

When to seek a consumer representative

See: National Standards for Mental Health Services (2010) Standard 3:

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

Other Standards also cover consumers

2012 v4 32

How to seek a consumer nominee

• Seek nominee from appropriate body, don’t “hand pick”

• NGOs, advertising, word of mouth, relative? (word of mouth - preferred quality assurance)

• NSW Consumer Advisory Group website has large geographical list

• New Federal consumer NGO (probably to be auspiced by Health Consumers Forum) specialist, State & Federal issues

• Social media – CV’s and groups on ‘LinkedIn’

2012 v4 33

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.

2012 v4 34

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 seek public opinion. 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.

2012 v4 35

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

2012 v4 36

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

2012 v4 37

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?

2012 v4 38

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)

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

2012 v4 39

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)