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?

Integrated Care Pathway for

Personality Disorder

Growing LocalPeer Support

Networks:Online and In Person

Increased Service User Involvement

Consultation and Advocacy

Promotion Service –Collective Mental Health

Advocacy

Lothian Psychological Intervention Network

Personality Disorder ‘Toolkit’ Project

Naomi Salisbury – June 2009

What Are We Doing?

• Research• Networking• Consulting• Interviewing• Writing• Producing a

Resource

Naomi Salisbury – June 2009

Why Personality Disorder?

http://www.theonion.com/content/video/special_boy_with_freakishly_large

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 ResourceIdeas 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@capsadvocacy.org

0131 538 7177

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 - 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

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 - 441http://apt.rcpsych.org/cgi/reprint/6/6/432

• Narrative Based Medicine: Why Study Narrative?, Trisha Greenhalgh and Brian Hurwitz, BMJ, 1999;318;48 - 50http://www.bmj.com/cgi/content/full/318/7175/48

• The Healing Power of Stories, Shayna Watson, Canadian Family Physician, Vol 53, August 2007http://www.cfp.ca/cgi/content/full/53/8/1283

Service User Involvement Articles from The Haven Project:

http://www.thehavenproject.org.uk/Research.html