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‘Much More Than a Label’

‘Much More Than a Label’. Consultation with People who have Experience of Personality Disorder in Lothian. How Did We Get Here?. What Are We Doing?. Research Networking Consulting Interviewing Writing Producing a Resource. Why Personality Disorder?.

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‘Much More Than a Label’

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  1. ‘Much More Than a Label’ Consultation with People who have Experience of Personality Disorder in Lothian Naomi Salisbury – June 2009

  2. How Did We Get Here? Naomi Salisbury – June 2009

  3. What Are We Doing? • Research • Networking • Consulting • Interviewing • Writing • Producing a Resource Naomi Salisbury – June 2009

  4. Why Personality Disorder? http://www.theonion.com/content/video/special_boy_with_freakishly_large Naomi Salisbury – June 2009

  5. Why Personality Disorder? • Levels of Stigma Hear Me! Survey in 2006 indicated that stigma is particularly high for Personality Disorder: • Highest stigma experience – 94% (81% average) • 51% in mental health/other health services (24% average) • Lack of Information “I have never been given any written information at all about BPD and I think that is wrong.” “Why don’t more people know about it?” Naomi Salisbury – June 2009

  6. Why Consult? • Studies indicate prevalence of 10 – 13% of the adult population in the community (No Longer a Diagnosis of Exclusion, NIMHE, 2003) • Adult population of NHS Lothian area in 2001 – 634,394 (General Register Office for Scotland (2003) Census 2001) • Which means an estimated 82,471 adults in Lothian may meet the criteria to be diagnosed with a personality disorder vtheatre.net Naomi Salisbury – June 2009

  7. Why Consult? “As acute illness gives way to chronic, individuals need to make sense of their experience, learn from it, ‘tell their stories’. Stories do not just describe the experience: they are repair work, creating a new self.” p68, Health, Blaxter (2004) Naomi Salisbury – June 2009

  8. Why Consult? • Scottish Recovery Network Narrative Projects “Part of the human experience is that we seek to find ways to make sense of our lives.” Allyson McCollam in the Preface to Recovering Mental Health in Scotland • Need for a voice • Shows that it’s about people not policies “Thank you for this opportunity” Naomi Salisbury – June 2009

  9. So Far… • Information about other projects • Publicity • ‘Burning Questions’ from staff • Interviews and Questionnaires with Service Users - positive and wide-ranging response so far Naomi Salisbury – June 2009

  10. The Resource Ideas so far… • Reclaiming Language • Infocard to carry • ‘Alternative’ Criteria • Answers to FAQs (Cartoon - Merinda Epstein) Naomi Salisbury – June 2009

  11. What Next? • More interviews and online questionnaire • Putting something together • Consultation day with service users • Launch • Training and Implementation (Cartoon – Merinda Epstein) Naomi Salisbury – June 2009

  12. Thank You • Linda Irvine – NHS Lothian • Keith Maloney – CAPS • Chris Young and Project Volunteers • All the participants so far… For more information contact me: naomi@capsadvocacy.org 0131 538 7177 Naomi Salisbury – June 2009

  13. References • Blaxter, Mildred (2004), Health, Polity Press:Cambridge • Brown, Wendy and Kandirikirira, Niki (2007) Recovering Mental Health in Scotland – Report on Narrative Investigation of Mental Health Recovery – Scottish Recovery Network - http://www.scottishrecovery.net/content/mediaassets/doc/Recovering_mental_health_in_Scotland_2007.pdf • Fairer Future, See Me Report from the Hear Me Survey 2006 - http://www.seemescotland.org.uk/images/pdfs/FairerFuture.pdf • Personality Disorder - No Longer A Diagnosis of Exclusion, NIMHE, 2003 - http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4009546 • Merinda Epstein – A Consumer Activist’s Guide To Mental Health In Australia - http://www.takver.com/epstein/cartoons.htm • www.inkcinct.com.au • www.theonion.com • www.vtheatre.net • www.savagechickens.com Naomi Salisbury – June 2009

  14. Further Information on Health, Narrative and User Involvement: Health and Narrative: • Patient Voices www.patientvoices.org.uk • A Narrative Approach to Mental Health in General Practice, John Launer, BMJ, 1999;318;117 – 119 http://www.bmj.com/cgi/content/full/318/7176/117 • Narrative and Severe Mental Illness: what place do stories have in an evidence based world?, Glenn A. Roberts, Advances in Psychiatric Treatment (2000), vol.6, pp432 - 441 http://apt.rcpsych.org/cgi/reprint/6/6/432 • Narrative Based Medicine: Why Study Narrative?, Trisha Greenhalgh and Brian Hurwitz, BMJ, 1999;318;48 - 50 http://www.bmj.com/cgi/content/full/318/7175/48 • The Healing Power of Stories, Shayna Watson, Canadian Family Physician, Vol 53, August 2007 http://www.cfp.ca/cgi/content/full/53/8/1283 Service User Involvement Articles from The Haven Project: http://www.thehavenproject.org.uk/Research.html Naomi Salisbury – June 2009

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