Report 69. Published November 2014.
This research, commissioned by the Department of Health (DH), set out to identify what could be learned about current policy and practice in self-neglect, experienced as a highly challenging aspect of contemporary adult social care. A national (England) survey investigated current strategic and policy initiatives, with responses from 53 out of 152 local authorities (34.9 per cent). A series of in-depth interviews undertaken with 20 managers, 42 practitioners and 29 people who use services across 10 authorities identified approaches that have produced positive outcomes from the perspectives of those involved.
The national picture
From the survey responses, the majority of local authorities and their partner agencies in safeguarding do not routinely collect data on the prevalence of selfneglect, although other data could sometimes provide useful indicators. As a consequence, estimates of the volume of self-neglect work being undertaken in localities varied widely. Just over half the authorities responded that they had defined or profiled examples of self-neglect in guidance or protocols; two-thirds had provided guidance to staff, but just a quarter had provided training on self-neglect, although it could be touched on in other training such as that on safeguarding, or mental capacity.
The aspects of self-neglect work experienced as the most challenging related to situations of very high risk in which someone with mental capacity refused services. Such situations raised ethical dilemmas in the balance to be struck between respecting autonomy and fulfilling a duty of care. Different agencies sometimes had different expectations of the thresholds for intervention; scrutiny of legal options was deemed vital. Further challenges were identifying where lead responsibility for self lies, who should be involved, and whether it resides within the remit of adult safeguarding or elsewhere. Common referral routes were into adult social care teams and/or through safeguarding alerts; joint work was often undertaken with housing or environmental health. A small number of agencies referred to the role of a multi-agency discussion panel in facilitating shared risk assessment and management, shared ownership and coordinated interdisciplinary involvement. There was recognition that care management systems did not always allow the time and continuity of involvement that could facilitate relationship-based practice.
In just over a quarter of authorities self-neglect had featured in a serious case review (SCR), and the findings had led to changes in policy or practice, with a focus on referral routes, multi-disciplinary engagement, shared risk management and the provision of strategic overview by the Local Safeguarding Adults Board (LSAB).
The perspectives of managers, practitioners and people who use services
A number of key themes emerged from the in-depth interviews.
The importance of creating a strategic and operational infrastructure for self-neglect practice
Strategic development of policies, protocols and practice tools to meet the challenges posed by self-neglect needs an organisational home. Managers in particular emphasised the importance of inter-agency governance, whether this structure and ownership were provided through the LSAB or some inter-agency parallel mechanism. Examples of both models were given, along with hybrid models in which separate policies and procedures for self-neglect were strategically linked to the LSAB.
Training, supervision and support:
Where some strategic infrastructure was in place, multi-agency training in self-neglect was sometimes becoming available, although from the practitioners’ perspective it was not widespread, and practitioners were more likely to have encountered self-neglect tangentially in other training, or to have transferred their learning from other contexts. Where training on specific aspects of self-neglect had been experienced, it had sometimes had a powerful influence on how practitioners approached their practice. The personal, emotional impact for practitioners of working with self-neglect was also apparent; engaging with sadness and despair, and the poignancy of people’s attempts to deal with such feelings, is deeply moving, and feeling helpless yet responsible is a very uncomfortable place to be. Such experiences indicated the need for robust supervision and support mechanisms to be in place.
Referrals and data collection:
Referral pathways were another aspect of creating an infrastructure that would enable effective responses to be made, whether these were to safeguarding, adult social care, or multi-disciplinary teams. Managers were particularly keen to develop ways of capturing data on self-neglect, while recognising the challenges arising of defining such a complex concept, agreeing thresholds and securing participation from the likely range of agencies involved.
Approaches to practice that facilitate outcomes perceived as positive by those involved
The most constant theme that emerged from the interviews with practitioners and people who use services interviews was the importance of relationship in securing engagement and achieving interventions that could make a difference. Such relationships take time to build, and continuity of involvement over a long period of time may be needed to build the trust that can achieve tangible outcomes. The people who use services emphasised the practitioner’s ability to show humanity, be reliable, show empathy and patience, be honest and work at the individual’s own pace as important components of helping. There was some consensus between practitioners and managers that care management models that restrict the time and focus of the practitioner did not provide the structure in which such work can be done, and many examples were given of ways in which workflow was adapted to facilitate ongoing involvement.
Finding the person:
Equally important were approaches that enable the practitioner to explore and understand the individual’s life history, and its possible connections with current patterns of self-neglect. Early experience, trauma, loss and relationship all figured strongly in the service users’ stories, and in the narratives of practitioners as they recounted how they had constructed bespoke interventions that responded to and took account of each person’s personal life experience, networks, relationships and motivations. Equally powerful were the ways in which practitioners recognised the emotional component of the service users’ current experience of their circumstances, working with the fear, anxiety, embarrassment and shame that were sometimes present. Equally, people who use services emphasised their own resilience and determination, and valued practitioners who recognised and worked with those qualities.
Mental capacity frequently featured in practitioners’ narratives, and was also recognised by managers as a key determinant of what intervention could and should take place. Knowledge of legal requirements was therefore an essential underpinning to practice. In many cases capacity assessments were routinely being evaluated and updated, with approaches that were fine-tuned and, where necessary, multi-disciplinary, although some respondents raised concerns about how thorough and confident practice was in this respect. The interface between different forms of legislation required skills in navigating and weighing different options, and expert advice in complex cases was vital.
No model intervention emerged, the key themes being flexibility (to fit individual circumstances), negotiation (of what was within the service user’s zone of tolerance), balance (between competing imperatives such as risk and safety) and proportionality (to moderate rather than seek to eradicate risk, in a way that preserved respect for autonomy). Engagement was often created through the provision of practical items – fridges, heaters – or support with benefits, which could be accepted more easily, building a relationship that would then enable attention to be turned to care of the domestic environment or (often the last to be agreed) personal care. Where intervention to clear or clean property was necessary, securing the individual’s engagement in deciding what should stay and what should go often achieved a more consensual outcome. Recognition was given to the attachment that people often had to their possessions or surroundings, and the need therefore to replace what was being given up with forward-looking intervention focusing on lifestyle, companionship and activities. Coercive interventions were also sometimes necessary, and used, although the perspectives of people who use services showed that directive approaches were deeply unwelcome. Practitioners recognised that the cost was high in human terms, and proceeded only with reluctance, when a basic level of existence was threatened, or risks to others were extreme. But there were examples of such interventions that, with honest but empathic engagement, and as part of an ongoing relationship and care plan, produced positive change.
Convening practitioners who could contribute a range of disciplinary perspectives to self-neglect proved to be a powerful tool in practice. Collaboration was often highly effective on the ground, with examples of strong engagement between adult social care, medical and health practitioners, the police, housing, environmental health, voluntary organisations and many others to develop shared understandings of a given situation, which could then inform the interventions selected as priorities. Case conferences, team discussions, multi-agency risk panels and other ways of convening partners were generally experienced as positive in confirming a sense of direction in an individual case, and in agreeing where the most appropriate focus should be placed, and by which agency.
It is clear that self-neglect policy and practice is as complex and as varied as selfneglect itself. From the experiences of those who have contributed to this research – whether as people who use services, practitioners or managers – it seems that effective practice combines three key sets of factors:
- Knowing, in the sense of understanding the person, their history, the significance of their self-neglect, along with all the knowledge resources that underpin professional practice.
- Being, in the sense of showing personal and professional qualities of respect, empathy, honesty, reliability, and care, being present, staying alongside, keeping company, being human.
- Doing, in the sense of balancing hands-on and hands-off approaches, seeking the tiny element of latitude for agreement, doing things that will make a small difference while negotiating for the bigger things, and deciding with others when intervention becomes a requirement.
The importance of creating a strategic inter-agency infrastructure to facilitate such practice cannot be over-estimated; referral pathways, discussion mechanisms, flexibility in work allocation practices, training and support all have a key role to play, as does an ethos of shared ownership between the agencies whose interventions can make a difference. That this is difficult is well established; that it can be done is now evidenced by this research.