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SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye: 15 th May 2014 PAVAUK, Birmingham
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Page 1: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 2: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

2013-14

Page 3: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

What do we mean by self-neglect?

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

Lack of standard definition – broad scope

Page 4: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 5: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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)

Page 6: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 7: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

Service users say …

Neglect of self-care

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

Page 8: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

How can we understand the challenges?

Organisational & service

environments

Mental capacity

Self-neglect per se

Page 9: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 10: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

Competing moral imperatives

Respect for autonomy and

self determination Duty of care and promotion of dignity

Page 11: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

• “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.”

Page 12: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Mental capacity

Mental incapacity

Self-care Self-neglect

Page 13: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 14: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 15: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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.”

Page 16: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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.

Page 17: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 18: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 19: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

Effective interventions? No gold standard from the literature

Harm reduction strategie

s

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

Page 20: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

What’s working in practice?

Negotiated

Sensitive & wide-ranging assessmentCare 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

Page 21: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

• “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.”

Page 22: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 23: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 24: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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

Page 25: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

Workforce and workplace priorities …

Staff development and learning,

building understanding and

capability

Organisational and interagency, systems to support practice, shared assessment

and decision-making

Page 26: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

…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

Page 27: SELF NEGLECT: MESSAGES FROM RESEARCH Suzy Braye & David Orr, University of Sussex Michael Preston-Shoot, University of Bedfordshire Presented by Suzy Braye:

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, [email protected]; Dr David Orr, [email protected]; Professor Michael Preston-Shoot, [email protected]


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