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Naomi Salisbury June 2009

Naomi Salisbury

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Naomi Salisbury June 2009

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    1. Naomi Salisbury – June 2009 Hi there Who we are and why we’re hereHi there Who we are and why we’re here

    2. Naomi Salisbury – June 2009 How Did We Get Here? Lots going on around PD in Lothian in the last couple of years ICP being developed with SU input LPIN – three conferences – now concentrating on training – SU involvement Positive feedback about SU involvement – from SUs and staff Peer Support – local online and social support group CAPS – well established with good reputation in collective mental health advocacy Toolkit idea around for a while – I was in the right place at the right time – involved in most of these areasLots going on around PD in Lothian in the last couple of years ICP being developed with SU input LPIN – three conferences – now concentrating on training – SU involvement Positive feedback about SU involvement – from SUs and staff Peer Support – local online and social support group CAPS – well established with good reputation in collective mental health advocacy Toolkit idea around for a while – I was in the right place at the right time – involved in most of these areas

    3. Naomi Salisbury – June 2009 What Are We Doing? Research Networking Consulting Interviewing Writing Producing a Resource Research – looking at what other’s have done – lots out there – NSHN for example Networking – making sure everyone knows what we’re doing including voluntary sector/minority organisations etc Consulting – major part of project and information gathering – mention cartoon Interviewing – part of consultation process – focused questions to prompt participants to talk about their experiences Writing – next – putting it all together to look at themes and ideas Resource – getting creative, something that will be useful and useableResearch – looking at what other’s have done – lots out there – NSHN for example Networking – making sure everyone knows what we’re doing including voluntary sector/minority organisations etc Consulting – major part of project and information gathering – mention cartoon Interviewing – part of consultation process – focused questions to prompt participants to talk about their experiences Writing – next – putting it all together to look at themes and ideas Resource – getting creative, something that will be useful and useable

    4. Naomi Salisbury – June 2009 Why Personality Disorder? Video demonstrates a lot of the problems we come across – assumptions, no one looking beyond a label, when we protest we get carted away! Which leads me to…Video demonstrates a lot of the problems we come across – assumptions, no one looking beyond a label, when we protest we get carted away! Which leads me to…

    5. 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?” High levels of stigma in and out of health services – hard when you’re trying to get help and support – higher levels than other mental illnesses – so seemed a good place to start – lots of work to do – could make a huge difference A lot of the problem seems to be due to a lack of information which we hope this would tackle Mention CartoonHigh levels of stigma in and out of health services – hard when you’re trying to get help and support – higher levels than other mental illnesses – so seemed a good place to start – lots of work to do – could make a huge difference A lot of the problem seems to be due to a lack of information which we hope this would tackle Mention Cartoon

    6. 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 One person can’t speak for everyone – everyone is an individual with different experiences – lots of people with PD means that we should try and speak to a cross section of them./ You aren’t so much alone in a crowd, as a crowd alone in a crowd…One person can’t speak for everyone – everyone is an individual with different experiences – lots of people with PD means that we should try and speak to a cross section of them./ You aren’t so much alone in a crowd, as a crowd alone in a crowd…

    7. 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) Read quote Telling your story can be a hugely helpful experience – if the other person has no agenda other than to listen to it can be very useful – this is the feedback that we have been getting so far Cartoon – another narrative – and probably very different to what her medical notes say – a chance to give your side of the story – which is in the end your experience – without being shouted down or having someone try to ‘sort it out’!Read quote Telling your story can be a hugely helpful experience – if the other person has no agenda other than to listen to it can be very useful – this is the feedback that we have been getting so far Cartoon – another narrative – and probably very different to what her medical notes say – a chance to give your side of the story – which is in the end your experience – without being shouted down or having someone try to ‘sort it out’!

    8. 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” People have been doing it successfully for a while – for example the SRN project which has had a great response and big impact on the mental health field and promotion of recovery Read quote – we all need to do it It gives people who are ‘the dustbin diagnosis of a cinderella service’ a chance to have a voice – possibly for the first time in their lives Done locally it shows that local people are listening – more chance of an impact and change – people NOT policies People are grateful to be able to take partPeople have been doing it successfully for a while – for example the SRN project which has had a great response and big impact on the mental health field and promotion of recovery Read quote – we all need to do it It gives people who are ‘the dustbin diagnosis of a cinderella service’ a chance to have a voice – possibly for the first time in their lives Done locally it shows that local people are listening – more chance of an impact and change – people NOT policies People are grateful to be able to take part

    9. 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 Collected lots of information – lots going on in England Put out a variety of publicity Asked for input from staff – questions and resource format Began interviews and online questionnaire – v positive response – very quick and people keen to talk about their experiences – broad demographic – variety of service interaction – all saying similar things – lack of information, huge waiting lists, and feeling they have been written off – still many people having diagnosis hidden from themCollected lots of information – lots going on in England Put out a variety of publicity Asked for input from staff – questions and resource format Began interviews and online questionnaire – v positive response – very quick and people keen to talk about their experiences – broad demographic – variety of service interaction – all saying similar things – lack of information, huge waiting lists, and feeling they have been written off – still many people having diagnosis hidden from them

    10. Naomi Salisbury – June 2009 The Resource Ideas so far… Reclaiming Language Infocard to carry ‘Alternative’ Criteria Answers to FAQs (Cartoon - Merinda Epstein) Variety of ideas – so far the idea of reclaiming negative language is popular – as seen in the cartoon Basic infocard to explain to staff what’s going on, who to call etc – like a medical bracelet – if you are unable to communicate well Alternative criteria – one so far is obsessive interest in unusual stationery and strong sense of social justice – likely to interfere! FAQs – to give staff insight and try to match what service users want to say and what staff want to knowVariety of ideas – so far the idea of reclaiming negative language is popular – as seen in the cartoon Basic infocard to explain to staff what’s going on, who to call etc – like a medical bracelet – if you are unable to communicate well Alternative criteria – one so far is obsessive interest in unusual stationery and strong sense of social justice – likely to interfere! FAQs – to give staff insight and try to match what service users want to say and what staff want to know

    11. 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) For things to be more like the cartoon… Continuing consultation until end of June Putting something together from the resource – then consulting again with participants – discussion day perhaps LAUNCH!!! Let people know it’s there Look at how we can use it to train staff and encourage it’s use – would be great if when someone is given the diagnosis the toolkit could be produced! Better name than toolkit!!For things to be more like the cartoon… Continuing consultation until end of June Putting something together from the resource – then consulting again with participants – discussion day perhaps LAUNCH!!! Let people know it’s there Look at how we can use it to train staff and encourage it’s use – would be great if when someone is given the diagnosis the toolkit could be produced! Better name than toolkit!!

    12. 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

    13. 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

    14. 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 - 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

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