Dr. Sarah Carr Dr. Alison Faulkner Prof. Trish Hafford-Letchfield Claudia Megele Dorothy Gould

1. How do we make safeguarding personal in mental health? Key findings for practice from the Keeping Control study Dr. Sarah Carr Dr. Alison Faulkner Prof. Trish Hafford-Letchfield Claudia Megele Dorothy Gould Christine Khisa Dr Rachel Cohen Middlesex University London

2. Disclaimer This presentation reports on independent research funded by the NIHR School for Social Care Research. The views expressed in this presentation are those of the author(s) and not necessarily those of the NIHR SSCR, NHS, the National Institute for Health Research or the Department of Health. Presentation title

3. ‘Keeping Control’ study: background and aims • Care Act 2014: ‘Making Safeguarding Personal’ policy implementation • Significant gaps in the knowledge about mental health service user experiences of adult safeguarding • Body of evidence on disability hate crime directed towards people with mental health problems • Questions to be asked about mental health service user experiences and concepts of targeted violence and hostility, prevention, protection and help-seeking

4. Study structure: facilitating a user-led conversation, amplifying the user voice 16 month study with four structured, interconnected work streams using different data collection methods: Literature scoping review User-controlled service user interviews (N=23) Practitioner-led stakeholder and practitioner focus groups discussing interview findings (N=46) Two twitter chat sessions @MHChat

5. Service user and survivor interview sample (N=23) • Disability (additional) • Yes = 9 (39%) • Geographical location • Urban = (48%) • Rural town NW = (4%) • Rural town SW = (4%) • Rural town Mid = 2 (8%) • Rural town (unknown) = (4%) • Rural village E = (4%) • Rural village SW = (4%) • Rural village (unknown) = (4%) • None recorded = (20%) • Other notes • Service users = (91%) • Proxy carers = (9%) Age • 18-25 = (9%) • 25-36 = (0%) • 36-45 = (22%) • 45-56 = (30%) • 56-65 = (26%) • 66-75 = (4%) • None recorded = (9%) Ethnicity • White British = (66%) • Black British = (4%) • Asian British = (9%) • Black African = (9%) • White African = (4%) • European = (8%) Gender at birth • Female (91%) • Male (9%) Gender identity • Female = (92%) • Male (4%) • Non-binary (4%) Sexual orientation • Heterosexual (79%) • Bisexual (4%) • Lesbian/gay (9%) • Other (4%) • Prefer not to say (4%)

6. Key service user and survivor interview findings Life histories and complexities • Life-time histories of violence, abuse and neglect (incl. by services) • Multiple sources of abuse and discrimination impacting on mental health – needing an intersectional understanding • ‘…our baseline understanding of the world is badly damaged’ • ‘The constant racism from my neighbours was affecting my mental health’ • ‘The whole process is like being abused again’ • 'Mental health issues and hate crime and LGBT issues tend to be combined because of the stigma involved with mental health and the stigma involved with LBGT issues. I think the Government needs to look, or the agencies, the various agencies need to look into the associations between the three, LGBT, mental health and hate crimes, because I think those are three things which are all treated as separate issues, but they are actually one big issue.' [no. 14] s

7. Key service user and survivor interview findings Understandings and experiences of risk and vulnerability • Risk from others: abuse and neglect experienced as abuse • Circumstances increasing vulnerability to targeted violence and abuse • '... there’s something very primal about humans where they feel they’ve got to assert their power and they want to like hit at the person who appears to be weaker’ • 'just it’s the abuse is being … it’s ingrained in there. .. So it’s the system. The frustration, people’s anger and it spills out and they know they can get away [with it] because once you’re there you have got no human rights.’ • 'I didn't see myself as black and I didn't think that black could be associated with such hate and so in my face'. Presentation title

8. Key service user and survivor interview findings Self-worth, ‘psychiatric disqualification’ and survival strategies • Being seen as an ‘unreliable witness’ and not being believed, normalising violence and abuse, self-blame and powerlessness • ‘…my capacity to be a witness and give any kind of testimony in any way is contaminated’ • 'But yeah it’s the response afterwards which was dreadful - that was the worst thing. But bad things happen, but if you can have help to get through bad things then that’s okay, but if bad things happen and then you are not helped or protected that makes it much worse.’ s

9. Service user and survivor coping strategies • Positive survival strategies, resourcefulness, perseverance, coping in the absence of official support • 'My decision to put my experiences to good use... that's been a real survival thing for me..’ • 'I was put here for a purpose, that’s the way I look at it, God put me here for a purpose and my purpose was to bring about change around disability and that’s what I’m doing.’ • 'I won’t give up, every time I walk out the door as they walk past, I go good morning, you know whether they answer me or not because I don’t want to stoop to their level.' [30] Presentation title

10. Service user and survivor recommendations What is needed? • ‘A civil, social working advocate of some sort’ • ‘…it’s the response afterwards which was dreadful…if bad things happen and then you are not helped or protected that makes it much worse’ • ‘I’ve learned the trigger words to use that will make them have to act’ • ‘…when people do come to seek help, it would be nice if people could not say it's not in their remit... just help them’ • ‘We just want someone to accept responsibility’ • ‘There was no one to walk with me through it all…[we need] empathy and viewing the person as the person is first and it should be foremost’ Presentation title

11. Practitioner and stakeholder focus group sample (N=46) • Social Workers = 21 (incl. 5 Mental Health Social Workers) • Police = 4 • Mental Health Nurses = 3 • Youth Justice Workers = 1 • Safeguarding Leads = 3 • Voluntary Sector = 5 • Housing = 2 • Civil Service = 1 • User Led Organisation Representatives = 2 • Fire Services = 1 • Health Managers = 3 (Forensic/Patient Experience)

12. Key practitioner and stakeholder focus group findings Views on vulnerability and risk • Risk from others: coercive control, exploitation, ‘mate crime’ • Circumstances increasing vulnerability to targeted violence and abuse • ‘…where you’ll find not so good outcomes is closed environments which have little outside influence coming in…you know when the door closes the stuff that happens here, stays here’ Views on professional roles and responsibilities • Systematic ‘buck passing’ between professionals and agencies, boundary setting, fear of taking individual responsibility • Lack of confidence, powerlessness, desensitisation • ‘You see with partnership working, no one takes ownership…’ • ’I certainly don’t feel confident like using the safeguarding planning meetings and strategy meetings to really you know, push her case forward, because other agencies…aren’t doing their bit, aren’t interested in helping’ s

13. Key practitioner and stakeholder focus group findings Experiences of adult safeguarding for mental health • Systemic, structural, resourcing and cultural issues • Inequalities in mental health adult safeguarding • ‘There would be these nice meetings, strategy meetings etc., and nothing would come out of it, you know they would draw up nice plans, nothing would happen’ • ‘We don’t have a mental health representative in MASH’ • ‘Ideally we would have the mental health equivalent of a MARAC’ Recommendations for change and improvements • Service user involvement, peer support and advocacy • Common language, shared and individual responsibility, open cultures and shared information, focus on the individual person • ‘…we need to provide a holistic service around a vulnerable person…criminal justice…housing and health care…start talking the same language’ • ‘…it requires individuals in that process to go above and beyond’ s

14. Key @MHChat session themes: December 2016 • Living with and managing stigma and fear as well as mental distress • Isolation, loneliness, homelessness or neglect by family and friends as risk factors for victimisation • Risk that being ‘different’ or ‘not belonging’ leads to victimisation • Abusers targeting victims in situations where individuals are vulnerable • Staff whistleblowing without reprisal • Replaying trauma of previous abuse • Austerity and political victim-blaming • Invalidating effects of mental health diagnosis and being ‘written off’ by services • Importance of a safe home and supportive network

15. Key @MHChat session themes: June 2017 • Account for histories of trauma and abuse in adult safeguarding in mental health • Individuals and situations not fitting ‘criteria’ for support • Quick response otherwise risk of disengagement and further harm • Feeling ‘lost in the process’, confused and disempowered - both service users and staff • Risk of reprisal if people ‘speak up’ • Influential, powerful independent advocacy, support for navigation of complex mental health and adult safeguarding processes • A cohesive adult safeguarding system, addressing risk of targeted abuse within mental health services, working with police and housing

16. Key Recommendations • We need to find ways of making sure that mental health service users know about adult safeguarding, know their rights and protections or how to use safeguarding language to raise alerts. • We need to find ways of enabling people to know that their experiences might count as ‘disability hate crime’ and give them information and support on, crime, rights and adult safeguarding. Under-reporting has led to a lack of data on the victimization of people with mental health problems. • As a society, but particularly as adult safeguarding practitioners, police and housing officers, we need to listen to and believe people with mental health diagnoses – they/we are too familiar with being discounted, disbelieved • Mental health service staff need to feel confident to take responsibility for incident reporting and resolution, and less afraid of reprisals for “speaking up”, reporting abuse by peers or advocating for victims. Safeguarding needs a solid presence within mental health services. • Peer workers who can provide independent, person-centred and consistent support for navigating complex mental health, adult safeguarding and criminal justice processes to resolution stage were recommended by a number of service users and practitioners. Presentation title

17. Key recommendations • Professionals need to be aware of the histories of trauma; multi-factorial abuse (i.e. racism, gender violence); living with fear and stigma as well as mental distress; “psychiatric disqualification” characterised by “not being believed” or “worth it”; and individual/diagnosis blaming. • There need to be the same clear lines of accountability and responsibility in adult safeguarding: to ensure that people’s concerns are dealt with in a timely manner. • Mental health service users’ experiences and concepts of risk from others, vulnerability and neglect should be central to adult safeguarding, and in defining disability hate crime. • Adult safeguarding in mental health should focus on the individual, provide a holistic, responsive and collective service around them: “criminal justice, housing and health care…start talking the same language”. An increased awareness of what adult safeguarding is in relation to ‘hate crime’ is required. Presentation title

19. Crazy Lives Matter Too – Wilda White The most significant cause of our continued oppression is… ‘the societal belief that people with psychiatric diagnoses or mental health challenges are not credible reporters or witnesses of our own experiences. When we speak we are not believed…’ Presentation title

20. Thank you • Dr. Sarah Carr: s.carr@mdx.ac.uk @SchrebersSister • Dr. Alison Faulkner: alison.faulkner2@btinternet.com @AlisonF101 • Prof. Trish Hafford-Letchfield: p.hafford-letchfield@mdx.ac.uk @ArchwayDiva • Claudia Megele: info@mhchat.com @MHChat @claudiamegele • Dorothy Gould • Christine Khisa • Dr. Rachel Cohen http://www.mdx.ac.uk/about-us/our-faculties/faculty-of-professional-and-social-sciences/school-of-health-and-education/mental-health-social-work-interprofessional/keeping-control