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SAR Themed – Self Neglect – Executive Summary

1. Introduction

1.1.   During 2019 and 2020, the Torbay and Devon Safeguarding Adults Partnership (TDSAP) received notice of the deaths of six individuals in Devon who had died in circumstances amounting to self-neglect. The Partnership concluded that the circumstances in each case met the mandatory criteria for a Safeguarding Adult Review (SAR)[1] and that a thematic SAR, seeking to identify common learning, would provide a valuable window on any recurring features of local safeguarding practice that required attention.

1.2.   The review considered the following circumstances:

1.2.1. AA died December 2018: AA was a man in his 50s with multiple and complex physical health conditions that had required lengthy hospitalization, amputation and a change of accommodation. Less than four weeks after his discharge he was found unresponsive at home and subsequently died. AA did not manage his health well, declining treatment, refusing medication and ignoring advice on diet and smoking. He was incontinent but did not receive suitable equipment or advice and at the time of his death was living in conditions of extreme squalor and loss of dignity.

1.2.2. BB died December 2019: BB was a woman in her late 70s who was found deceased at home with significant burns, having inadvertently set her clothing alight while using a gas hob to provide heating, contrary to all advice. With a complex medical history, she had also for many years consumed significant amount of alcohol and been diagnosed with dementia. Her self-care and hygiene were poor and her home was dirty and neglected. In receipt of care and support services since 2017, she did not easily engage; she often declined care  and continued to drink

1.2.3. CC died January 2020: CC, known as Gilda in the review report at the request of her relative, was a woman in her sixties who died at home of cellulitis with sepsis. She had a diagnosis of schizoaffective disorder and long-standing involvement with mental health services, although for the six months before she died her mental health had not been monitored as no care coordinator was allocated. She had care and support from the local authority to support her activities of daily living, but when unwell would become self-neglectful, cease her medication and disengage from services. She sometimes expressed ddelusional thinking about an imaginary husband and children, and claimed she would be staying with them over the Christmas period, which resulted in her care workers not initially becoming concerned when they could not contact her. Eventually the Police gained access and found her deceased.

1.2.4. DD died May 2020: DD, a woman in her early 80s, died in hospital having been admitted emaciated, covered in faeces and urine burns, malnourished and anaemic. She had a history of mental ill-health, with a diagnosis of schizophrenia and possible paranoid personality disorder. She had been discharged stable from mental health services in 2018, losing her community support worker. Her self-neglect was long standing and she lived a reclusive life in squalid and unhygienic conditions but no care and support package was in place. She did have support from a neighbour, a priest and a cleaner but these contacts ceased under the Covid-19 lockdown rules in March 2020. A taxi driver delivering provisions raised concerns about the state of her property and although Adult Social Care and the GP did not initially find her circumstances of undue concern, subsequent visits prompted a referral to mental health services. When, on a visit, her circumstances were discovered she was admitted to hospital, where she later died.

1.2.5. EE died July 2020: EE was a man in his late 50s who died of sepsis and renal failure. He had a history of renal failure and a range of co-morbidities, as well as depression. Having been hospitalized in 2019 and diagnosed with multiple serious infections, after self-discharge he often declined interventions and did not follow lifestyle advice. He appeared to have a fatalistic view of his medical condition and although he expressed concern about, and sought review of, his developing symptoms, his engagement was intermittent, even as his condition deteriorated. Covid-19 restrictions meant that a friend could no longer support him with household tasks and his home conditions and his hygiene declined also. He was found collapsed at home by the dialysis patient transport service and taken to hospital, where he died.

1.2.6. FF died September 2020: FF was a man in his 50s with a long history of heavy alcohol use and a range of alcohol-related health complications. He had at times been homeless but since 2019 had held his own tenancy. He had frequent hospital admissions for complications from excessive alcohol or withdrawal from alcohol and in 2020 underwent surgery for a subdural haemorrhage followed by rehabilitation. Although mental health services and social care were viewed as necessary on discharge, they were not made available. FF quickly returned to heavy alcohol consumption, his self-care and domestic environment rapidly declined and a week after his discharge he was found deceased at home, the cause of death being bilateral subdural haematoma and liver cirrhosis.

[1] Section 44 (1-3), Care Act 2014

2. The Thematic Review

2.1.   The thematic review used the established evidence base on best practice in self-neglect[2] as a benchmark against which to evaluate practice in the six cases. This provides learning across five domains: (i) direct work with the individual; (ii) interagency working; (iii) organizational features; (iv) safeguarding governance; (v) national policy. In this review, the learning was predominantly in the first three domains.

2.2.   Using the evidence base as a template, the terms of reference for the review were to identify common learning themes relating to self-neglect work in Torbay and Devon, including systemic features that help or hinder effective work and a focus on how the Covid-19 pandemic impacted practice.

2.3.   To achieve this, the TDSAP sought detailed information from all agencies involved with one or more of the six individuals. Two independent reviewers worked with a panel of senior members of staff from key agencies to identify the learning themes. These were presented at a learning event attended by practitioners, managers and senior leaders from the participating agencies. Participants contributed their experiences of working with self-neglect in Torbay and Devon, exploring the factors within and between agencies that can help or hinder best practice.  TDSAP also contacted all known family members of the six individuals. Relatives of three of the individuals participated in the review, discussing their perspectives with the reviewers and learning about the findings and recommendations.

[2] Relevant sources of evidence include:

·       Braye, S., Orr, D. and Preston-Shoot, M. (2014) Self-neglect: Building an Evidence-Base for Adult Social Care. London: Social Care Institute for Excellence.

·       Preston-Shoot, M. (2019) ‘Self-neglect and safeguarding adult reviews: towards a model of understanding facilitators and barriers to best practice.’ Journal of Adult Protection, 21 (4), 219-234.

·       Preston-Shoot, M., Braye, S., Preston, O., Allen, K. and Spreadbury, K. (2020) National SAR Analysis April 2017 – March 2019: Findings for Sector-Led Improvement. London: LGA/ADASS.


3. Learning Themes

3.1.   Good practice: In all cases some good practice was observed – this included responsive assessments and interventions, attention to homelessness, patience and persistence from practitioners, healthcare provision in hospital, understanding of needs and wishes. In contrast, numerous shortcomings were also identified and the summaries below therefore set out aspects of practice that need to change.

3.2.   How well were health and social care needs met? There were some serious shortcomings also across all the cases. These included failure to address alcohol consumption, either by securing treatment or managing risks, particularly where it was related to mental health needs; continence supplies not being made available, resulting in significant loss of personal dignity; delay in summoning help when unable to rouse the individual; unlawful interpretation of the mandate for care and support needs assessment; failure to escalate concerns about deteriorating health; failure to respond to worsening mental health; some evidence that practitioners became accustomed to poor standards of hygiene and were insufficiently proactive in recognising the need for intervention.

3.3.   Was mental capacity considered?  Mental capacity did not receive adequate attention. In several cases involving high-risk decision-making, no capacity assessments took place and no attention was paid to the possible loss of executive function, which on the evidence of the individuals’ behaviour (including long-term alcohol use) could well have been a feature. There was an over-reliance on assumptions of capacity and on the concept of lifestyle choice. It appears that staff struggle with application of the Mental Capacity Act 2005 in practice.

3.4.   Were the individuals safeguarded? There were shortcomings in actions to safeguard the individuals concerned and evidence that practitioners can become desensitised to extreme living conditions and fail to act. The shortcomings included both a failure to make safeguarding referrals and a failure to pursue safeguarding enquiries in response to referrals made, in some cases on erroneous grounds that indicate a lack of understanding of criteria.

3.5.   What responses were made to reluctance to engage? Reluctance to engage is a common feature of self-neglect. Here, while good responses were often made to crises, there was a lack of consistent follow-up to build relationships of trust that could overcome that reluctance. Service refusals or non-attendance at appointments were taken at face-value.

3.6.   How was alcohol use addressed? Both cases in which alcohol use featured showed shortcomings in how this was addressed. Alcohol use was accepted as an established pattern and proactive attempts to explore its origins were not made. In one case, no treatment was offered, and in the other there was a lack of support following discharge from hospital. There appears to be a lack of understanding of the impact of alcohol on decision-making and barriers to accessing mental health services for those with dual diagnosis.

3.7.   Were hospital discharges safe? In four of the cases, safe discharge was compromised by a failure to secure appropriate services for the individual, resulting in an absence of continence support, reablement, mental health support and care and support provision. These omissions impacted on safety, health, hygiene and dignity for the individuals concerned.

3.8.   Was fire safety attended to? Fire was a significant element in the death of one individual. Despite the fire risks having been recognised for some time, with both family members and practitioners aware of the dangers, they had not been resolved or managed prior to her death. The Fire & Rescue Service have since undertaken a review of their fire safety process.

3.9.   Did practitioners liaise with family members? The family members participating in this review have all raised concerns about the extent to which they were kept informed, consulted and advised by practitioners. They believe that with more consistent and informative involvement they would have been able to work more closely with practitioners to ensure their family member’s safety. They also felt that information they shared about their family member was not always acted upon by services.

3.10.  How well did agencies work together? Sound interagency working requires good communication and information-sharing, appropriate referrals between agencies, joint working and case coordination. In the cases under review here, there were shortcomings in all of these aspects. There was evidence of poor information-sharing –  a failure to inform other agencies of key information that could have altered the course of their work – meaning that in some circumstances practitioners were acting without full understanding of the situation.  There were some serious breakdowns of communication between agencies, resulting in omissions and missed opportunities for agencies to advise others of the need for action, sometimes in potentially serious safeguarding situations.  Opportunities for joint working were sometimes missed. An absence of case coordination is evident across five cases. It was common for there to be no one agency that knew the whole picture, meaning that there were no coordinated responses to all elements of risk. A lack of multiagency meetings resulted in an absence of shared strategic approaches; in practice, there was a lack of understanding of the roles, duties and responsibilities of others, and an absence of shared ownership

3.11.  How did organisational features affect practice? Answers to the question ‘why did this happen’ are often to be found in the organisational features within agencies that have adversely affected practice. These can range from external pressures and resource constraints to the nature of systems internal to the organisation, all of which can be observed in the six cases reviewed here. There were pressures from levels of demand and staffing constraints. Services were compromised by a lack of suitable resources. Internal systems (such as pathways for sharing Police alerts and patient record systems) impacted upon communications between services. There were barriers to the provision of appropriate mental health services in the context of alcohol use. Supervision and management oversight were sometimes missing. In terms of staff support and training there is clear evidence of the need for better understanding of self-neglect and its risks, and of approaches that can produce positive outcomes.

3.12.  How did Covid-19 affect practice? Three of the individuals in this review died during the Covid-19 pandemic, and impacts from Covid have been noted in two of those cases. The adverse effect of restrictions on face-to-face engagement is evident, as well as a lack of clarity on how risk assessment was carried out for patients advised to shield because of pre-existing serious health concerns. In one case, lockdown restrictions removed all the supports that the individual had, leaving her isolated and hidden from view.

3.13.  How does the Torbay and Devon Safeguarding Adults Partnership exercise its governance role in relation to self-neglect? The Partnership has exercised leadership by publishing guidance on self-neglect alongside its more general safeguarding procedures, although this postdates the deaths of the individuals whose circumstances are under review here. Key to the effectiveness of guidance, however, is how well embedded it is within partner agencies, and this review indicates a need for more action here to raise awareness and understanding of self-neglect, its risks and resolution pathways. The Partnership’s responsibility to review serious cases is fulfilled by this thematic review in respect of the six individuals involved, but delay in the Partnership’s decision-making has resulted (in two cases) in delay of between 3 and 4 years before an analysis of the learning has emerged.

4. Recommendations

Some agencies have already made some changes in their practices in the light of learning from their involvement with one or more of the individuals who feature in this thematic review. Nonetheless, this thematic review has highlighted further systemic changes that are needed and recommends that the Torbay & Devon Safeguarding Partnership should:

1.   Review its procedures for decision-making on referrals for safeguarding adult reviews to ensure timely consideration is given and timely action taken;

2.   Review existing self-neglect guidance in the light of the learning from this thematic review, remedy gaps or omissions and include stronger focus on family engagement;

3.   Audit the use of its guidance on self-neglect, escalation, adult safeguarding concerns, and multi-agency meetings by agencies across the Partnership;

4.   Audit decision-making on and outcomes of self-neglect adult safeguarding concerns referred under section 42(1) Care Act 2014, to seek assurance that risks are being addressed;

5.   Audit mental capacity practice in cases of self-neglect, with particular attention to consideration of executive function and fluctuating capacity, and take measures to strengthen practice through training, guidance or supervisory practice where indicated;

6.   Seek assurance from partner agencies that practitioners working with self-neglect understand the need to refer concerns to safeguarding teams and to guard against diagnostic overshadowing in their assessment of need and risk;

7.   Seek assurance that practitioners and those with supervisory responsibilities across all services understand the need to initiate multiagency review in cases of high-risk self-neglect, that pathways for doing so are clear and that they are being used effectively;

8.   Provide multiagency training on self-neglect, to include referrals of adult safeguarding concerns, legal literacy, mental capacity, consent and information-sharing;

9.   Provide guidance and training on working with reluctance to engage;

10. Seek assurance from partner agencies that supervision and management oversight is provided to practitioners working with self-neglect cases;

11.  Audit cases of hospital discharge where self-neglect is a feature to determine whether risks are routinely identified and mitigation measures put in place during the discharge process;

12.  Convene a summit of commissioners and providers to review gaps in services and to develop further integrated approaches to commissioning;

13.  Seek assurance from mental health and substance misuse service providers on how they are working, individually and collaboratively, in cases of self-neglect that involve mental ill-health and substance misuse and consider commissioning priorities for dual diagnosis services;

14.  Seek assurance about systems for ensuring effective and timely continence care in the community following hospital discharge;

15.  Seek assurance that housing providers are identifying tenants whose self-neglect might be placing their tenancies at risk and are referring to primary care and social care to ensure that health and social care needs are assessed and appropriate support provided;

16.  Ensure that measures are taken to ensure effective use of multi-agency meetings to improve timely and whole system responses to individuals who self-neglect;

17.  Seek assurance that services have systems in place to identify and support all individuals at risk of self-neglect who require self-protective measures as part of COVID-19 measures;

18.  Seek assurance from individual services regarding the completion of internal changes they stated had been made or they intended to make, as set out in section 7 of this report.