‘ Knowing What’s Written About Me’

1. Copying Letters - A Pilot Project to enhance Consumer & Carer collaborationRaj TannaConsultant PsychiatristPeel & Rockingham Kwinana MHS, WAraj.tanna@health.wa.gov.au ‘Knowing What’s Written About Me’

2. Contributors Paula Edwards - consumer & carer liaison Gordon Shymko - Clinical Director & Guidance Group - Consumer & Carer Committee Representatives Peel and Rockingham Kwinana Mental Health Services (PaRK), WA

3. Outline • Background • Clinical Governance • Outline of the Project • Consumer & Carer Representative Group • Implementation Tasks - leadership & management • Outcomes

4. Better Mental Health Care “Three elements can serve as a guide in improving mental health services : ethics, evidence & experience. In our view, it’s preferable to start with a statement of the principles intended to guide new service developments. Such principles can be used in a form of triangulation, so thatthis ethical base is combined directly with the relevant evidence base and with the experience base to produce the strongest possible case for change.” “Central to the development of balanced mental health services, services need to reflect the priorities of service users and carers. ” G Thornicroft & M Tansella World Psychiatry June 2008

5. Consumer & Carer Participation • Championed internationally as a human rights issue • Cornerstone of Australian Mental Health Policy • Participation can • Empower • Contribute to service delivery • Contribute to quality & improvement through drawing on lived experience & expertise • Improved outcomes & increased satisfaction • Match service provision to perceived needs

6. Background • After 16 years of National Mental Health reform: • Major service gaps & poor experiences of care are common • Mental Health community reports little progress in implementing key priorities • Consumer & Carer involvement is often ‘tokenistic’ • lack of training and supportive infrastructure • Policy imperatives not supported by clear guidelines of implementation Is Consumer & Carer participation set up to Fail ?

7. “Not for service” experiences of injustice and despair in mental health care in Australia. A report of consultations by the Mental Health Council of Australia, the Brain & Mind Research Institute, University of Sydney, in association with the Human Rights & Equal Opportunity Commission. Canberra: Mental Health Council of Australia, 2005. • “Out of hospital, out of mind!” A report detailing mental health services in Australia in 2002 and community priorities for national mental health policy for 2003-2008. Canberra:Mental Health Council of Australia, 2003.Groom G, Hickie I, Davenport T • Psychotic disorders in urban areas: an overview of the Study on Low Prevalence Disorders. ANZJPsychiatry 2000; 34: 221-236. Jablensky A, McGrath JJ, Herrman H, et al.

8. Clinical Governance “A framework through which organisations are accountable for continually improving the quality of their services and safeguarding high standards of care by creating an environment in which excellence in clinical care will flourish.” Scally, G., Donaldson, L.J. British Medical Journal 1998; 317: 61-65

9. Clinical governance contd • 7 Pillars • Consumer & Carer involvement • Clinical Effectiveness • Clinical Risk Management • Education, training & development • Clinical Audit • Use of Information • Staffing & staff Management

10. Peel & Rockingham Kwinana MHS, WA • Consumer & Carer Participation - organisational goal ? • Clinical Governance Framework developing • Information, Accessibility & Collaboration • Embedded small project to have broader implications • Test the structures & processes, identifying systemic barriers stated valuesbroader unstated of project cultural shift

11. Embedded Project - Copying letters • Knowing What’s Written About Me • Pilot Proposal in collaboration with the Guidance Group • Based on • Policy and experience in the UK - DoH • Australian Mental Health Statements of Rights & Responsibilities (2000) “the right to appropriate & comprehensive information, education & training about their mental health problem, its treatment & services available… interact with health care providers, particularly in decision making regarding treatment, care & rehabilitation.”

12. Rationale • Information about an individual’s health & their care should be copied to them as a matter of Right • Involve consumers in decisions about health care and communicate with them • Effective way for consumers to understand their diagnosis and treatment • Demonstrates a commitment to communicating and valuing consumers as well as carers

13. Guidance Group • Consumers are valued in the organisation (?) • Consumer advisory group • Representation on some Executive & Steering Committees • Formation of a ‘Guidance Group’ as part of project in July 08 • 2 carer & 4 consumer representatives • Meet on a monthly basis

14. Guidance Group - challenges • Representativeness • Changing an Adversarial Process • Focus Group V MHS structure • Terms of Reference • Payment • Training • Consumer Representative Skills Training Programme (Health Consumers Council) • Supervision / Support • Dealing with criticism & conflicting views • Addressing Concerns - evidence of authentic responsiveness

15. Leadership Goals / challenges Different for different groups : • Consumers & Carers : • Build trust • Act with integrity • Listening & Responsiveness • Service • Enhance positive culture • Inspire others to change • Encourage innovative thinking • Valuing staff • Reward achievement

16. Method - Copying Letters Proposal • Letters between health professionals should be copied to consumers • Sharing letters will take into account mental state, risk, capacity, impact on therapeutic relationship and ethics of witholding information - (service related concerns) • Letters will not be shared where: • The consumer does not want a copy (consumer related) • The clinician thinks it may cause harm (service related) • Special safeguards of confidentiality are needed (both related) • No surprises - everything should already be discussed and shared

17. Service Tasks • Pilot Proposal development in collaboration with Guidance Group • Clinical Governance Committee Approval • Ethics Committee Approval • Pilot project • Education & training • Administrative requirements • Implementation • Evaluation How to Manage & support change?

18. Change Management challenges - DoH, Uk • 4 Critical success factors identified: • Organisational Ownership & Momentum • Resources, Systems & capacity • Clinical Engagement • Approach to Implementation • 3 Common themes across above factors: • Communication & information • Keeping it simple • Demonstrating & emphasising the benefits

19. Conceptual Change frameworks & Goals • MLQ - Transformational Leadership • Changing levels of Culture • Symbolism for broader change • non-linear & non-incremental • Stated values of project unstated broader change Goals • Valuing Consumers & Carers involvement • Working Collaboratively • Improved Quality Care • Bridging the gap

20. “ Dear Dr Tanna I am very impressed with the information I received about the Letters proposal. It seems that everything to do with sharing letters to consumers as well as carers has been taken into consideration.I think that it is very important for consumers to trust their clinicians and feel Safe in there company. My son who has a diagnosis of schizophrenia has been with mental health services for about 7 years. I asked him what he thought about the Sharing of letters proposal and found that he was very enthusiastic, he thought That it was a great idea. I was pleasantly surprised as usually his answer to a Question like that is I don’t care or whatever you think. I hope that I have been of some help. kind regards (Carer rep on guidance Group)”