Adult safeguarding and the law - Buckinghamshire Partnership
Self-neglect: applying learning from research and reviews Michael Preston-Shoot (researcher with Suzy Braye and David Orr) Buckinghamshire SAB 15th MARCH 2018 What do we mean by self-neglect? Neglect of self-care Personal hygiene Nutrition/hydration Health Neglect of the domestic environment Hoarding: (persistent difficulty discarding or parting with possessions, regardless of value DSM V )
Squalor Infestation To such an extent as to endanger health, safety and/or wellbeing Refusal of services that would mitigate risk of harm Self-neglect: this covers a wide range of behaviour neglecting to care for ones personal hygiene, health or surroundings and includes behaviour such as hoarding (DH 2017) Self-neglect: the research evidence SAB SAB governance governance
Scoping Scoping the the evidence evidence on on self-neglect self-neglect Workforce Workforce developmen developmen tt needs needs 2013 2013
Review Review of of serious serious case case reviews reviews 2014-17 2014-17 Exploring Exploring self-neglect self-neglect practice practice 2013-15
2013-15 Key challenges of self-neglect: how can research and reviews help? Ethical/ Ethical/ ideological ideological dilemmas dilemmas Legal Legal literacy literacy Mental Mental
capacity capacity Interagency Interagency cooperation cooperation Summary of research findings: practitioner approaches Practice with people who self-neglect is more effective where practitioners Build rapport and trust, showing respect, empathy, persistence, and continuity Seek to understand the meaning and significance of the self-neglect, taking account of the individuals life experience Work patiently at the pace of the individual, but know when to make the most of moments of motivation to secure changes Keep constantly in view the question of the individuals mental capacity to make selfcare decisions Communicate about risks and options with honesty and openness, particularly where coercive action is a possibility
Ensure that options for intervention are rooted in sound understanding of legal powers and duties Think flexibly about how family members and community resources can contribute to interventions, building on relationships and networks Work proactively to engage and co-ordinate agencies with specialist expertise to contribute towards shared goals Summary of research findings: organisational approaches Effective practice is best supported organisationally when Strategic responsibility for self-neglect is clearly located within a shared interagency governance arrangement such as the SAB Agencies share definitions and understandings of self-neglect Interagency coordination and shared risk-management is facilitated by clear referral routes, communication and decision-making systems Longer-term supportive, relationship-based involvement is accepted as a pattern of work Training and supervision challenge and support practitioners to engage with the
ethical challenges, legal options, skills and emotions involved in self-neglect practice Effective practice requires whole system alignment Multi-agency Multi-agency governance governance Organisational Organisational infrastucture infrastucture Legal Legal and and ethical ethical literacy literacy Relationship Relationship The
The person person Case reviews find shortcomings across the system Lack Lack of of leadership leadership and and coordination coordination Failure Failure of of escalation escalation &
& challenge challenge to to poor poor service service standards standards Failure Failure to to think think family family Legal Legal literacy
literacy Assessments Assessments of of mental mental capacity capacity and and risk risk Failures Failures of of communication communication
and and informationinformationsharing sharing Work Work on on uncoordinated uncoordinated parallel parallel lines lines Learning about working together
Collective Collective omission omission of of the the mundane mundane and and the the obvious obvious East Sussex SAB: Mr A - a pen picture Died 24th July 2016, aged 64, Kent resident, no family contact Medical history: Korsakoff Syndrome, arteriovenous
malformation, epilepsy, encephalopathy, type 2 diabetes, and bilateral leg cellulitis & ulceration Placed in nursing care in East Sussex Sept 2015, commissioned by West Kent CCG: no suitable local placement, placement search ongoing, no suitable alternative Placement (and DoL) in best interests as deemed to lack capacity to decide where to live Supported in decision-making by a former colleague with LPA Self-neglect: refusal of care and treatment Cause of death: systemic sepsis, cutaneous & soft tissue infection of legs, diabetes mellitus, idiopathic hepatic cirrhosis Mr A: Key findings Mr A: Recommendations Example SCRs/SARs Gemma Hayter Warwickshire no agency took responsibility for young disabled
adult WD Waltham Forest what is a lifestyle choice when living in squalor? Ellen Ash Glasgow a complex mother/son relationship, repeating pattern not addressed ZZ Camden changing behaviour not challenged by home care staff Mr C Bristol (2016) capacity assumed, impact of organisational capacity, inconsistent multi-agency working, interface between mental health and drug use, anti-social behaviour, legal literacy on section 117 MHS 1983, non-punitive approach and tenacious work by housing professionals YY Camden delays in raising concerns and commencing safeguarding enquiries; lack of contingency planning; no high level risk management meeting; procedures not well publicised or known Ms F - West Berkshire (2014) complex family with co-dependent needs, tenacious and non-punitive approach by housing staff Adult D Newcastle son preventing agencies from addressing his fathers needs Adult A - North Tyneside failure to collect repeat prescriptions for type 2 diabetes not noticed by the health centre; utility company did not raise an alert A1 Birmingham failure to liaise with psychiatrist over a capacity assessment and
with Ambulance Trust over hospital admission Example SARs Mr V Isle of Wight (2015) discharge planning should involve all agencies and carers, capacity assessments to be recorded, use expertise of specific healthcare professionals Mr W Isle of Wight (2015) importance of liaison between GPs and District Nurses, and sharing of safeguarding concerns across agencies; demanding workloads KH Gloucestershire importance of precise referrals, and of community nurses reporting concerns; demanding workloads; disguised compliance; lack of knowledge of adult safeguarding amongst housing providers Ted Gloucestershire (2016) district nursing service in turmoil, understaffed and being reorganised, importance of full information in hospital discharge letters, review repeat prescriptions, involve sheltered housing staff BB and CC Islington multi-agency meetings must share information, analysis and agree action plans; importance of liaison between GPs, OTs and care agency Importance of liaison, multi-agency meetings and information-exchange; medication reviews; training in mental capacity and mental health law, thorough risk and
capacity assessments, supervision (South Tyneside, East Sussex, Surrey, Newcastle, Tower Hamlets, Kent and Medway, Slough) Wandsworth WWF (2017) A widow living alone with diagnosed multiple sclerosis. She holds strong views about the support she is prepared to accept but some care workers have developed very effective working relationships with her. Her deteriorating ability to mobilise and increasing difficulties with swallowing, transfers and hand movements has had a significant impact on her mood and ability to go out. It has become progressively difficult for her to smoke safely and there have been several small fires when she has dropped lighted matches or cigarettes, sustaining serious burns, aggravated by the emollient creams that are applied to treat skin problems. She refuses to stop smoking or to light cigarettes only when friends, family or care workers are present. Findings willingness to commission agencies with specific expertise; multi-agency communication; risk reduction approach prioritised over rights of adults with capacity to make choices; fire risk not part of risk
assessment and management. West Berkshire Mr I (2016) Alcohol related death at home History of abuse, mental ill-health and physical disability Assessed as having decision-making capacity regarding receipt of care Positive findings case discussed at risk enablement panel; welfare checks by police, commitment of care staff, mental health specialists consulted, legal options considered Learning concerns about self-neglect not escalated; risk assessment not updated; impact of workloads; supervision does not address complexity; lack of exploration of mental capacity; lack of familiarity with available procedures; key meetings not minuted; risk averse rather than empowering practice Thematic analysis the adult
History explore questions why; curiosity Person-centred approach be proactive, address patterns Hard to reach try different approaches, use advocates and concerned others, raise concerns, discuss risks, maintain contact, avoid case closure Mental capacity ongoing assessment & review, guidance for staff regarding people with capacity who refuse services and are at risk Autonomy & life style choice an increasing focus (Adult A North Tyneside, B & C South Tyneside, Mr I West Berkshire, W Isle of Wight, and several Gloucestershire cases OO, R, AT and KH) Carers offer assessments, concerned curiosity & challenge, explore family dynamics and repeating patterns, engage neighbours and non-resident family members Thematic analysis team around the adult Recording clarity & thoroughness of work done, agreed plans, outcomes achieved, discussions held Legal literacy know and consider available law
Safeguarding literacy awareness of guidance & procedures, of risks and vulnerabilities, of safeguarding systems; adequate exploration of apparent choices Working together silo working, threshold bouncing, inflexible agency responses, shared assessments & plans, liaison & challenge, followthrough Information sharing Advocacy consider use with hard to engage people Use of procedures DNAs, safeguarding alerts, risk assessments Standards of good practice thoroughness of assessments, challenge professional optimism, lack of assertiveness & curiosity, authoritative practice Thematic analysis organisations around the team Support cases are complex, high risk, stressful & demanding, so support systems essential; review scope and adequacy of policies Culture encourage challenge & escalation of concerns;
balance personalisation with duty of care; review case management approach Supervision & managerial oversight senior managers should take responsibility for overseeing complex cases; effective supervision; use risk panels; audit cases Staffing practitioners must have appropriate experience & resilience; review allocation of work; mindful of health & safety Thematic analysis LSAB around the organisations Conducting SCRs involve family & carers, avoid delay Monitoring & action planning robust action plans and audits of impact needed Procedures & guidance develop protocols on risk & capacity assessments, follow up of service refusal, cases where adults have capacity but at risk of harm Use of SCR across LSABs, in training, with government
departments, for procedural development Training on mental capacity, law, procedures, writing IMRs, on person-centred approach & strategies to engage people; evidence outcomes Whats going on? Understanding lived experience: neglect of self-care I got it into my head that Im Negative self-image: demotivation Different standards: indifference to social appearance Inability to self-care: (It) makes me tired ... I get tired because daily routines are exhausting me, to do the simple things like get
washed, put on clean clothes, wash my hair. unimportant, so it doesnt matter what I look like or what I smell like. Im drinking, Im not washing; I wouldnt say Im losing the will to live, thats a bit strong, but I dont care, I just dont care. I wouldnt say I let my standards slip; I didnt have much standards to start with.
I always neglected my own feelings for instance, and I didnt address them, didnt look at them in fact, I thought no, no, my feelings dont come into it. Understanding lived experience: neglect of domestic environment The only way I kept toys was hiding them. When I was a little boy, the war had just started; everything had a value to me everything in my eyes then, and indeed now, has potential use Influence of the past: childhood, loss Positive value of hoarding: a
sense of connection, utility Beyond control: voices, obsessions I want things that belonged to people so that they have a connection to me. I dont have time to make a note of everything in the paper that has an interest to me and so Im very fearful of throwing something away. The distress of not collecting is more than the distress of doing it. Mental capacity: affects perception of risk and intervention focus Mental capacity
Self-care Self-neglect Mental incapacity The tricky concept of lifestyle choice SARs tell us that we are quick to assume capacity, respect autonomy (and walk away) Well I dont know to be honest. Suddenly one But life stories tell us otherwise: I used to wake up in the morning and cry when I saw the sheer overwhelming state... My war experience in Eastern Europe
was scary, but nothing compared to what I was experiencing here. I got it into my head that Im unimportant, so it doesnt matter what I look like or what I smell like. day you think, What am I doing here? Your esteem, everything about you, you lose your way so now youre demeaning yourself as the person you knew you were. I wouldnt say Im losing the will
to live, thats a bit strong but I dont care. I just dont care. Challenging the dichotomy between autonomy and protection Is it really autonomy when You dont see how things could be different You dont think youre worth anything different You didnt choose to live this way, but adapted gradually to circumstances Your mental ill-health makes self-motivation difficult You have impairment of executive brain function
Is it really protection when Imposed solutions dont recognise the way you make sense of your behaviour Your sense of self is removed along with the risks: hoarding is my mind You have no control and no ownership Your safety comes at the cost of making you miserable A more nuanced approach Respecting lifestyle choice isnt the problem; it's
where people don't think theyre worth anything different, or they dont know what the options are. Autonomy does not mean abandonment Protection entails proportionate risk reduction Mental capacity: a reminder Capacity is decision specific and time specific A person lacks capacity if (at the time the specific decision has to be made): Challenges of mental capacity assessment in self-neglect Mental capacity in the selfneglect literature Involves
Not only the ability to understand and reason through the elements of a decision in the abstract But also the ability to realise when a decision needs to be put into practice and execute it at the appropriate moment the knowing/doing association Frontal lobe damage may cause loss of executive brain function, resulting in difficulties: understanding, retaining, using and weighing information in the moment, thus affecting
problem-solving, enacting a decision at the appropriate point A more nuanced understanding Effective self-neglect work: interlocking literacies A relational approach: ethical action situated within relationship He has been human, thats the word I can use; he has been human. Whereas when x came, they were sort of hands on: Bumph! shall we start cleaning up now?
The idea is not to get too pushy about it; people start getting panicky then, you know? Youre interfering in my life, that kinda thing. She got it into my head that I am important, that I am on this earth for a reason. Hes down to earth, he doesnt beat around the bush. If there is something wrong he will tell you. If he thinks you need to get this sorted, he will tell you. With me if youre too bossy, I will put my feet
down and go like a stubborn mule; I will just sit and just fester. What makes for robust interagency working? Commissioning Research reports 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. (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/ evidence-impact/Research-reports/Workforce-development-for-self-neglect.aspx Braye. S., Orr, D. and Preston-Shoot, M. (2014) Self-Neglect Policy & Practice: Building an Evidence Base for Adult Social Care. London: SCIE. (Summary reports also available) http://www.scie.org.uk/publications/reports/69-self-neglect-policypractice-building-an-evidence-base-for-adult-social-care/ Also available are 3 shorter
summary reports: for managers, for practitioners and for a general audience. Journal articles 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, 182193. Braye, S., Orr, D. and Preston-Shoot, M. (2015) Learning lessons about self-neglect? An analysis of serious case reviews, Journal of Adult Protection, 17, 1, 3-18. Braye, S., Orr, D. and Preston-Shoot, M. (2015) Serious case review findings on the challenges of self-neglect: indicators for good practice, Journal of Adult Protection (17, 2, 75-87). Braye, S., Orr, D. and Preston-Shoot, M. (2017) Autonomy and protection in selfneglect work: the ethical complexity of decision-making. Ethics and Social Welfare, 11 (4), 320-335. Orr, D., Preston-Shoot, M. and Braye, S. (2017) Meaning in hoarding: perspectives of people who hoard on clutter, culture, and agency, Anthropology & Medicine, http:// dx.doi.org/10.1080/13648470.2017.1391171 Preston-Shoot, M. (2016) Towards explanations for the findings of serious case reviews: understanding what happens in self-neglect work, Journal of Adult Protection, 18(3), 131-148.
Preston-Shoot, M. (2017) On Self-Neglect and Safeguarding Adult Reviews: Diminishing Returns or Adding Value? Journal of Adult Protection, 19(2), 53-66. Additional resources Self neglect Braye S, Orr D and Preston-Shoot M (2016) Working with People Who Self-neglect: A Practice Tool (2nd edition). Dartington: Research in Practice for Adults. Braye S and Preston-Shoot M (2016) Legal Literacy in Adult Social Care. Strategic Briefing. Dartington: Research in Practice for Adults. Braye, S., Orr, D. and Preston-Shoot, M. (2017) Self-neglect and hoarding, in Cooper, A. and White, E. (eds) Safeguarding Adults under the Care Act 2014: Understanding Good Practice. London: Jessica Kingsley. (pp 180-198) Orr, D., Braye, S. and Preston-Shoot, M. (2017) Working With People Who Hoard: A Frontline Briefing. Dartington: Research in Practice for Adults. Legal literacy Braye S and Preston-Shoot M (2016) Legal Literacy: A Practice Tool. Dartington: Research in Practice for Adults.
Braye, S. and Preston-Shoot, M. (2016) Practising Social Work Law, 4th edition. Basingstoke: Palgrave. Executive capacity Hildebrand C, Taylor M and Bradway C (2014) 'Elder self-neglect: the failure of coping because of cognitive and functional impairments. Journal of the American Association of Nurse Practitioners 26 452-462. Naik A, Lai J, Kunik M and Dyer C (2008) Assessing capacity in suspected cases of self-neglect. Geriatrics 63 (2) 2431. Key contacts Please contact us if you have any queries: Professor Suzy Braye, [email protected] David Orr, [email protected] Professor Michael Preston-Shoot, [email protected]
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