Caroline Clements Project lead, Professor Nav Kapur Suicidal behaviour in bipolar disorder: Who is most at risk and how can mental health services provide better care? Caroline Clements Project lead, Professor Nav Kapur Slides in this talk present independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (RP-PG-0407-10389). Further support was received from primary care trusts, mental health trusts, the Mental Health Research Network and Comprehensive Local Research Networks in North West England. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Suicidal behaviour in bipolar disorder Context Characteristics and risk factors for suicide in bipolar disorder Characteristics of self-harm in bipolar disorder The experiences of people with suicidal behaviour in bipolar disorder

Suicidal and self-harm in the UK 6000 50%+ of those who die by suicide have a history of self-harm Risk of suicide increased 30-50 fold in the year after self-harm men mid-life

Suicide in bipolar disorder How many people with bipolar disorder die by suicide?

Suicide in bipolar disorder How many people with bipolar disorder die by suicide? 8% (men) Nordentoft et al., 2011

Suicide in bipolar disorder How many people with bipolar disorder die by suicide? 8% (men) 5% (women) Nordentoft et al., 2011

Suicide in bipolar disorder At least 5% of people with bipolar disorder die by suicide Nordentoft et al., 2011; Baldessarini et al., 2012

Self-harm in bipolar disorder Around 60% of people with bipolar disorder will self-harm at some point in their lifetime Baldessarini et al., 2006; Simon et al., 2007

Self-harm in bipolar disorder Around 60% of people with bipolar disorder will self-harm at some point in their lifetime Tend to use more dangerous methods Baldessarini et al., 2006; Simon et al., 2007

Previous studies on suicidal behaviour in bipolar disorder Small samples Single site Hospitalised patients Limited information Real world impact?

Aim of the suicide and self-harm study To understand Frequency and characteristics Risk factors Key real world experiences of people with bipolar disorder who died by suicide or harmed themselves

Suicidal behaviour in bipolar disorder Context Characteristics and risk factors for suicide in bipolar disorder Characteristics of self-harm in bipolar disorder The experiences of people with suicidal behaviour in bipolar disorder

Characteristics and risk factors for suicide in bipolar disorder Reviewed the full suicide database of the National Confidential Inquiry into Suicide and Homicide by People with Mental Illness (1996-2009)

Characteristics of suicide in bipolar disorder Key results 1489 suicide deaths on NCI database had primary diagnosis of bipolar disorder - 10% of all Inquiry deaths Around 116 per year No significant trends over time (while suicide fell in the general population) Clements et al., 2013, Psychological Medicine

Characteristics of suicide in bipolar disorder Variable Bipolar disorder n=1489(%) All other diagnoses n=13976(%) Duration of primary diagnosis   Over 5 years 1057 (71.4) 6766 (50.3) Under drug/alcohol services* 39(5.9) 701 (11.9) More than 5 admissions to in-patient care 469 (32.4) 1754 (13.3) Last contact before death <7 days 904 (61.2) 6577 (48.8) Immediate suicide risk none or low 1230 (86.1) 11004 (86.0) Clements et al., 2013

Risk factors for suicide in bipolar disorder Inquiry case-control study of current and recent in-patients 63 people with BPD who died by suicide vs 63 people with BPD who had not died

Risk factors for suicide in bipolar disorder Live alone Depression Previous self-harm Suicide Life events Alcohol misuse

Suicidal behaviour in bipolar disorder Context Characteristics and risk factors for suicide in bipolar disorder Characteristics of self-harm in bipolar disorder The experiences of people with suicidal behaviour in bipolar disorder

Characteristics of self-harm in bipolar disorder Reviewed the self-harm database of the Manchester Self-Harm Project

Characteristics of self-harm in bipolar disorder Nested case-control analyses within MaSH database vs. Outcome = repeat self-harm 103 bipolar disorder 515 date matched controls

Characteristics of self-harm in bipolar disorder Results Clements et al., 2015, Journal of Affective Disorders

Characteristics of self-harm in bipolar disorder Results Hazard ratio >3 4% of cases with bipolar disorder died by suicide 1% of general self-harm cases died by suicide Clements et al., 2015

Suicidal behaviour in bipolar disorder Context Characteristics and risk factors for suicide in bipolar disorder Characteristics of self-harm in bipolar disorder The experiences of people with suicidal behaviour in bipolar disorder

The experiences of people with suicidal behaviour in bipolar disorder 22 in-depth interviews with 2 target populations Relatives or carers of people with bipolar disorder who died by suicide (n=11) People with bipolar disorder who had self- harmed (n=11)

The experiences of people with suicidal behaviour in bipolar disorder Are seen by services within 7 days of suicide 60% 80% Report being in contact with services when they self-harm

The ‘merry-go-round’ of access to mental health care for suicidal behaviour in bipolar disorder

Undiagnosed bipolar disorder The ‘merry-go-round’ of access to mental health care for suicidal behaviour in bipolar disorder Help-seeking Navigating the system Gate-keepers Undiagnosed bipolar disorder Screaming for help Access to care

Undiagnosed bipolar disorder The ‘merry-go-round’ of access to mental health care for suicidal behaviour in bipolar disorder Help-seeking “Because I know where I am and what’s going on and I can express what I think’s going on in my head, they don’t realise that I’m ill… as ill as I am. I get to a critical desperate point where I have to scream for help.”[2s] “We didn’t realise that we had a pass, if you like, back into the mental health system, so we went back to the GP” [6] Navigating the system Gate-keepers Undiagnosed bipolar disorder Screaming for help Access to care “Just like a merry-go-round.” [1s]

Routes and roadblocks in communication about suicidal behaviour in bipolar disorder

Routes and roadblocks in communication about suicidal behaviour in bipolar disorder Patient MHS Carer Hidden suicidal intent Conflict with MHS Denial of problem Concern for privacy Burden on family/carer Conflict with family Denial of problem Poor relationship with family Collaboration Evaluating quality of care Shut out via patient confidentiality Conflict with MHS to be involved

Routes and roadblocks in communication about suicidal behaviour in bipolar disorder “She had attempted it maybe about four times, but she didn’t want us to know, she didn’t want to worry us.” [7] Patient MHS Carer Hidden suicidal intent Conflict with MHS Denial of problem Concern for privacy Burden on family/carer Collaboration Evaluating quality of care Shut out via patient confidentiality Conflict with MHS to be involved

Routes and roadblocks in communication about suicidal behaviour in bipolar disorder “He certainly, sort of, was able to give the, the consultant the impression that, you know, ‘I’m alright’”[4] Patient MHS Carer Burden on family/carer Conflict with family Denial of problem Poor relationship with family Hidden suicidal intent Collaboration Evaluating quality of care Shut out via patient confidentiality Conflict with MHS to be involved

Evaluating quality of care Conflict with MHS to be involved Routes and roadblocks in communication about suicidal behaviour in bipolar disorder Patient MHS Carer Burden on family/carer Conflict with family Denial of problem Poor relationship with family Hidden suicidal intent Conflict with MHS Denial of problem Concern for privacy Collaboration You just got told on many, many occasions that, you know, it’s patient confidentiality. But, when your dealing with somebody who’s suffering from mental health [problems], and if I turn round and said to them, I said ‘if my son had cancer you would have involved me, to care for him quite well at home’” [4] Evaluating quality of care Conflict with MHS to be involved

Suicide and self-harm in bipolar disorder Implications Clinicians should be aware of the suicide risk in those with BPD Some risks are shared Some risks may be unique Improvements in services response to suicidal behaviour in bipolar disorder

Many thanks to: All participants who gave their time and shared their stories The National Confidential Inquiry into Suicide The Manchester Self-Harm project Bipolar UK and affiliated support groups