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
Scoping the concept of self-neglect
2011
Addressing workforce development needs
2013
Review of serious case reviews
Exploring self-neglect practice

3. What do we mean by self-neglect?
Lack of standard definition – broad scope
Lack of self- care
Personal hygiene
Daily needs
Refusal of essential care
Lack of care for living environment
Hoarding
Squalor
Infestation
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’
Inability
Lifestyle choice

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 … Neglect of self-care Neglect of environment
Demotivation: homelessness, health, loss, isolation – self-image, negative cognitions
Different standards: being indifferent to social appearance
Inability to self-care: mental distress, physical ill-health, homelessness
Neglect of environment
Influence of the past: childhood, loss, abuse, bereavement
Positive value of hoarding: emotional comfort, connection to something, “my family”, hobby, to be appreciated by others
Beyond their control: voices, obsessions, physical ill-health, lack of space

8. How can we understand the challenges?
Organisational & service environments
Mental capacity
Self-neglect per se

9. 1. Challenges from self-neglect per se
The sheer complexity of self-neglect
Understanding what’s going on
Lack of training
Uncertainty about legal frameworks
Engaging with the individual
Thresholds for intervention
Adapting assessment tools
Negotiating value positions
Knowing what works
Frustration and anxiety

10. Competing moral imperatives
Respect for autonomy and self determination
Duty of care and promotion of dignity

11. “I’m not 100% convinced our coroner
“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
Respect autonomy to self-manage
Respect autonomy but high risk remains
Provide support to contain risk
Best interests intervention to reduce risk
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
Decisional capacity
Executive capacity
Capacity

14. What about mental capacity in practice: MCA 2005 guidance
A person is unable to make a decision if they cannot:
understand information 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?
Understanding relevant information
This could be seen to include information about the consequences of taking or not taking certain action, and the likelihood of those consequences
Using or weighing information
“Sometimes people can understand information but an impairment or disturbance stops them using it ... it leads to a person making a specific decision without understanding or using the information they have been given.”

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
Finding an organisational home for self-neglect: “everyone’s, no-one’s, someone else’s business”
Outside definition of vulnerable adult: SAB business?
Diverse agency cultures thresholds and practices
Eligibility barriers to preventive work
Lack of clarity on information sharing
Workflow patterns based on time limited care management
No forum for shared decision-making
Care pathways to independence that are not achievable
Lack of legal literacy in face of a complex legal framework

18. Learning from SCRs Practice and policy development Guidance to staff
Interface with safeguarding
Multi-agency approach
Lead coordinating manager
Skilled & timely capacity assessments
Understanding of available legal rules
Training informed by research and by SCRs
Supervision that challenges and supports

19. Effective interventions? No gold standard from the literature
Harm reduction strategies
Cleaning as a short term solution only
Assistance with routine daily living
Early intervention to prevent entrenched patterns
Combined approaches: MI, CBT, sorting, tasks
SRI medication in some cases

20. What’s working in practice?
Negotiated
Sensitive & wide-ranging assessment
Care by consent: start with what can be agreed
Support to life transitions
Coerced
Threat to tenancy
Environmental health
Leverage to secure engagement
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 …
Staff development and learning, building understanding and capability
Organisational and interagency, systems to support practice, shared assessment and decision-making

26. …to develop:
Organisational culture and practices that give practitioners the space and time for building relationships of trust
Flexibility in what are expected as case outcomes
Training and practice development mechanisms to facilitate key aspects of effective practice
Interagency systems for shared assessment, intervention, risk-management and decision-making

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.
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,
Short presentation on the 2011 research findings
Braye, S., Orr, D. And Preston-Shoot, M. (2013) A Scoping Study of Workforce Development for Self-Neglect. London: Skills for Care.
Professor Suzy Braye, Dr David Orr, Professor Michael Preston-Shoot,