Self Neglect: Messages from Research

1. Self Neglect: Messages from Research Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye: 15th May 2014 PAVAUK, Birmingham

2. Sources of research evidence

3. What do we mean by self-neglect? Lack of standard definition – broad scope To a degree that endangers own or others’ safety, health & well being

4. What causes self-neglect? • No overarching explanatory model • May arise from inability or unwillingness, or both • Influenced by societal and professional constructions of ‘the problem’

5. At best • Complex interplay of association with physical, mental, social, personal and environmental factors • Underlying personality disorder, depression, dementia, obsessive-compulsive disorder, trauma response, severe mental distress, and/or neuropsychological impairment • Diminishing social networks and/or economic resources • Physical and nutritional deterioration • Once functional behaviours and personal philosophy • Attempt to maintain identity and control • Some manifestations have stronger recognition as a disorder (e.g. “hoarding disorder” included in DSM-V independently of OCD)

6. The perspectives of people who self-neglect? • Little previous research done in this area • Emerging themes from the scarce literature • Pride in self sufficiency • Connectedness to place and possessions • A drive to preserve continuity of identity and control • Traumatic life histories and life-changing events • Shame and efforts to hide ‘evidence’ from others • Emerging themes from our study: • Lifelong pattern of behaviour held in balance • Traumatic event disturbs that balance • Escalation to the point that someone else gets worried

7. Service users say …

8. How can we understand the challenges?

9. 1. Challenges from self-neglect per se

10. Competing moral imperatives

11. “I’m not 100% convinced our coroner ... will have heard about the personalisation agenda and independence, choice and control and I think he will, without a doubt, see this as a failing of services and we should have acted. The man had capacity, you know. He was given all assistance but basically he said, ‘look, I don’t want you in my house; I don’t want anything that you could offer me. I’m quite happy living in the manner in which I want to live, and go away’ ... I think it’s a real difficult issue.”

12. 2. Mental capacity affects perception of risk and intervention focus Mental capacity Self-care Self-neglect Mental incapacity

13. Mental capacity • Capacity in the literature involves not only • weighing up information and being able to understand consequences of decisions and actions, but also • the ability to implement those actions • Decisional and executive capacity • “Articulate and demonstrate” models of assessment

14. What about mental capacity in practice:MCA 2005 guidance • A person is unable to make a decision if they cannot: • understandinformation about the decision to be made (‘relevant information’) • retain that information in their mind • use or weigh that information as part of the decision-making process, or • communicate their decision

15. Is there room here for executive capacity?

16. In practice… • Decisional capacity is prioritised • The absence of executive capacity may not be taken into account in determining that an individual has capacity • Understanding the need to act, and deciding to do so, may be assumed to imply capability to implement the action • Assumption of capacity to make decisions about refusal of intervention may miss the complexity of ‘relevant information’ or ‘using and weighing information’ • Capacity to execute simple functions may mask lack of capacity to sequence decisions in the more complex ways necessary to minimise risk • An emerging capacity picture over time may not be pursued.

17. 3. Challenges from organisational & service environments

18. Learning from SCRs

19. Effective interventions? No gold standard from the literature

20. What’s working in practice? Relationship building: piecing together understanding of the unique experience and working towards trust-based acceptance of intervention

21. “You have to really get to know someone before you know what self-neglect is about.” • “People who self-neglect don't want lots of people doing things for them, but support to get by…we’re mindful that if we push people to do things they don’t want to do, we will get nowhere at all because they’ll shut the door.” • “Respecting lifestyle choice isn’t the problem; it's where people don't think they’re worth anything different, or they don’t know what the options are.”

22. What service users highlight - engaging with professional help • Already wondering: spot the moments of motivation, good timing • Finding help is difficult: lack of knowledge, accommodation • No choice (state of home) but directiveness may be seen as pushy & unhelpful • Right kind of input: not intrusive, gender, cost, encouraging, hands-on, person-centred, going the extra mile, reliable, compassionate, understanding

23. What service users highlight – effective interventions • Support with clearing if sensitive & participatory; care packages that are relevant to perceived needs • Mental health services, such as CBT or counselling, to tackle deep-rooted issues • Links with other service users • Relationship-building: connection, emotional literacy • Meaningful activity • Carer support • Accessing advocacy and resources, such as benefits • Re-housing • Information

24. What practitioners highlight • Can feel lonely, helpless, frustrating and risky • Strong management support and multi-agency collaboration crucial • Places and spaces to discuss ethical conundrums, such as meaning of consent & duty of care – panels, meetings, case conferences • Time to build relationships – finding the right person & levers to engage • Work with neighbours and family too • Qualities of persistence, patience, resilience, limited expectations, respectful curiosity • Good understanding of motivational interviewing, capacity and law • Little victories, baby steps

25. Workforce and workplace priorities …

26. …to develop:

27. Further information on the research • Braye, S., Orr, D. And Preston-Shoot, M. (2011) Self-Neglect and Adult Safeguarding: Findings from Research. London: SCIE. http://www.scie.org.uk/publications/reports/report46.pdf • Braye, S., Orr, D. and Preston-Shoot, M. (2011) ‘Conceptualising and responding to self-neglect: challenges for adult safeguarding’, Journal of Adult Protection, 13, 4, 182-193. • Short presentation on the 2011 research findings http://www.communities.idea.gov.uk/comm/landing-home.do?id=2962596 • Braye, S., Orr, D. And Preston-Shoot, M. (2013) A Scoping Study of Workforce Development for Self-Neglect. London: Skills for Care. http://www.skillsforcare.org.uk/NMDS-SC-intelligence-research-and-innovation/Research/Research-reports/Workforce-development-for-self-neglect.aspx Professor Suzy Braye, s.braye@sussex.ac.uk;Dr David Orr, d.orr@sussex.ac.uk; Professor Michael Preston-Shoot, michael.preston-shoot@beds.ac.uk