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

Naomi Salisbury – June 2009 How Did We Get Here? Personality Disorder ‘Toolkit’ Project Lothian Psychological Intervention Network Consultation and Advocacy Promotion Service – Collective Mental Health Advocacy Increased Service User Involvement Growing Local Peer Support Networks: Online and In Person Integrated Care Pathway for Personality Disorder

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

Naomi Salisbury – June 2009 Why Personality Disorder?

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

Naomi Salisbury – June 2009 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 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 Salisbury – June 2009 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 - _2007.pdf _2007.pdf Fairer Future, See Me Report from the Hear Me Survey Personality Disorder - No Longer A Diagnosis of Exclusion, NIMHE, H_ H_ Merinda Epstein – A Consumer Activist’s Guide To Mental Health In Australia - Epstein – A Consumer Activist’s Guide To Mental Health In Australia

Naomi Salisbury – June 2009 Further Information on Health, Narrative and User Involvement: Health and Narrative: Patient Voices A Narrative Approach to Mental Health in General Practice, John Launer, BMJ, 1999;318;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, pp Narrative Based Medicine: Why Study Narrative?, Trisha Greenhalgh and Brian Hurwitz, BMJ, 1999;318; The Healing Power of Stories, Shayna Watson, Canadian Family Physician, Vol 53, August Service User Involvement Articles from The Haven Project: