Working with Consumers

1. Working with Consumers Mark McMahon Grant Sara NSWIOP Career and Consultancy Module Nov 2010 2010 version2

2. Purpose and overview • Working with consumers in non-clinical roles 1: Background knowledge 2: Specific issues and challenges 3: Practical tips – what to do and what to avoid 2010 version2

3. Introductions • Mark • Grant • This collaboration 2010 version2

4. Part 1: Background knowledge 2010 version2

5. Consumers during times of Wellness (episodic illness) Consumers as Inpatients 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? Consumers as Outpatients Consumer Time: (not to scale) 2010 version2

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’) • 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 2010 version2

7. Recovery Values: 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. • 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. 2010 version2

8. 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? 2010 version2

9. Consumer participation 2010 version2

10. Consumer participation 2010 version2

11. 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 2010 version2

12. 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 2010 version2

13. 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 2010 version2

14. 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 …..OR as (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 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 2010 version2

15. Legal requirements and standards • In reality, few specific legal requirements as to consumers on committees, etc • UN Disability Rights now to be legislated 2010 version2

16. 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. 2010 version2

17. Part 2: Specific issues and challenges 2010 version2

18. 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 2010 version2

19. Focus Recovery -versus- Symptoms/illness 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) 2010 version2

20. 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 2010 version2

21. 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 2010 version2

22. 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 2010 version2

23. 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) 2010 version2

24. Managing complex relationships and boundaries • Major problems very rare • Dual relationships: clinical and organisational contact with a person and their family • Confidentiality • Multiple responsibilities 2010 version2

25. 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 2010 version2

26. Part 3: Practical issues 2010 version2

27. 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 2010 version2

28. 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 2010 version2

29. 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. 2010 version2

30. 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. 2010 version2

31. Typical Consumer Meeting Agenda Note definite structure, recognition and support aspects and general level of trust and respect • 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. 2010 version2

32. 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 2010 version2

33. 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? 2010 version2

34. 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! 2010 version2

35. 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) 2010 version2