Self-neglect as a significant public health issue: exploring the responsibility of the SPCDN

Health impact

Self-neglect is a global issue and is frequently seen in older populations, but does occur across all ages. It can be categorised as intentional and unintentional; nevertheless, both are known to contribute to increased morbidity and mortality (Güler and Engin, 2023). Despite being under-reported (Day and McCarthy, 2015), self-neglect is widely known to increase poor health outcomes, such as nutritional deficiency (Smith et al, 2006), medicinal nonadherence (Turner et al, 2012), disengagement in services (Braye et al, 2015), and increased mortality risk in cardiovascular, pulmonary, neuropsychiatric, endocrine, metabolic and neoplasm-related deaths (Dong et al, 2009). Individuals are at an increased risk of hospitalisation, admission to hospice (Dong and Simon, 2013), amputations, ulcers, wounds and infections (Owen et al, 2022), as well as increased risk of domestic fires (NHS England, 2022; London Fire Brigade, 2023). Unfortunately, individuals suffering from self-neglect may only present to services when health is negatively impacted, reflected in the lack of accurate prevalence data. SCPDNs must adopt prevention strategies to promote the health and wellbeing of communities (NMC, 2022). Furthermore, teams should be equipped to detect and diagnose self-neglect to foster interdisciplinary collaboration and a culture of sharing (Day and McCarthy, 2017).

The NHS Long-Term Plan (NHS England, 2019) highlights the need to personalise care, recognising nonmedicinal alternatives to promote health and wellbeing. However, it has been argued that integrated care systems need to recognise the value of communities, such as the voluntary community and social enterprise (VCSE) in improving and sustaining good health and wellbeing (Charles, 2024). Collaboration is vital within deprived geographical locations, due to an increased risk of self-neglect, and patient engagement within these communities could be the key to improving patient outcomes (den Broeder et al, 2022). The SCPDN has the opportunity to address inequalities in health by building networks and alliances, connecting patient populations with local initiatives, supporting third sector network organisations (Holmes, 2024).

Health-needs assessment

There is no standardised set of guidelines or protocols for the diagnosis, treatment and care of people who suffer from self-neglect (Baruth and Lapid, 2017). The DHSC (2023) advises that assessments of needs must be person centred. The National Institute for Health and Care Excellence (NICE, 2022) states that if self-neglect is considered or suspected, health professionals have a duty to make an assessment based on risks and needs specific to the patient, in line with The Care Act 2014. NHS England (2017) provides general guidance on safeguarding adults, highlighting the responsibility of health professionals to work in solidarity with local authorities to reduce harm and promote wellbeing. All health professionals have a responsibility to assess individual situations to promote safety and wellbeing, consider views and wishes, follow local reporting procedures, to listen carefully and demonstrate understanding while sharing appropriate recordable information (NHS England, 2017).

Health professionals often find self-neglect situations daunting and challenging (Social Care Institute for Excellence (SCIE), 2014), leading to variations in screening tools and interventions. Therefore, a gap in prevalence data across the UK is apparent (NIHR, 2020). Locally, Merseyside Safeguarding Adults Board (2019) developed a Self-Neglect Toolkit to help guide professionals from local boroughs working in complex self-neglect situations. The toolkit emphasises the role of different professionals and agencies within the multidisciplinary team and provides best practice guidance with examples. Similarly, the DHSC (2023), NICE (2022), NHS England (2017) and SCIE (2014) toolkit recognises the complex issues within diagnosis, treatment and care. The importance of relationship building, understanding risks, disclosure, autonomy, persistence and consulting with other professionals is also echoed. While useful, the practical application of the toolkit within community nursing is not a requirement, policies on safeguarding and mental capacity are followed routinely. This lack of mandatory application could suggest the toolkit is not being used to its full potential. SCPDNs must ensure excellent interprofessional relationships between agencies and the multidisciplinary team to support the integration of guidance and envision a delivery of high-quality care utilising evidence (Noblett, 2019; NMC, 2022). A Self-Neglect Toolkit could enhance the quality of care delivered not only by SCPDN but by the wider team to standardise practice, improve quality assurance and support decision making.

Health-needs assessments are conducted by SCPDNs through individualised, enhanced, person-centred holistic assessments, described by NHS England (2017) as ‘the golden rule’. Holistic care is widely promoted professionally in contemporary nursing (NMC, 2022); however, there remains a societal stigma regarding mental, psychosocial health (Pescosolido, 2013; Baral et al, 2021). Therefore, district nurses are of paramount importance in delivering a total therapeutic approach to ensure that the wider social, environmental, mental, biopsychosocial and spiritual needs are identified (NMC, 2022).

The DHSC (2023) deem the initial assessment process the most important. During this process, the use of enhanced communication strategies with patients, professionals, families and carers can establish individual abilities and needs in order to formulate coproduced care plans (The King's Fund, 2016; NMC, 2022). Application of empathy, emotional intelligence, active listening, eye contact and body language should be practiced establishing a rapport (SCIE, 2014; Ruben et al, 2020). Non-verbal communication is often essential to engagement during the assessment process (McKinnon, 2018; Ruben et al, 2020).

Capacity assessment

Assessing mental capacity is an imperative part of diagnosis, treatment, and care for people at risk of or suffering from self-neglect (SCIE, 2014; Day et al, 2017; Noblett, 2019; NICE, 2022). Self-neglect is a form of recognised abuse, and in line with the NMC Code, nurses must preserve safety (NMC, 2018). Underpinned by legislation, the 2005 Mental Capacity Act exists to empower and protect people who have mental impairment to make informed decisions. Despite the common misconception, self-neglecting behaviours are not necessarily a result of mental illness (Dahl et al, 2020), although risk is increased (Day and Leahy-Warren, 2008). Assumption of capacity must be applied to all cases, unless there is reason to doubt mental capacity. Community nurses collaborate with a diverse range of patients and often individual's decisions may appear eccentric or unwise, if they do not conform to societal norms (Dartington Trust, 2020; NMC, 2022). A full mental capacity assessment is necessary to determine if an individual lacks mental capacity. If the patient is found to have mental capacity, their decisions must be respected. This can ignite feelings of unease within health professionals and cause moral and ethical dilemmas to arise (McDermott, 2011; Mauk, 2011; Baruth and Lapid, 2017; Day et al, 2017). Nurses often find unwise decisions difficult to accept, due to compassion and potential associated risk (Band-Winterstein, 2018). Evidence suggests that community nurses often lack confidence in the practical application of the Mental Capacity Act (Marshall and Sprung, 2016). Hence, SCPDNs must support community nurses and patients with this complex process and resist the urge to overpower individuals, which can result in disengagement (Craif et al, 2019). The importance of ensuring the person has all relevant information to understand, retain, use and weigh up the decision in question need not be overlooked (Braye et al, 2015). Establishing mental capacity consequently determines the plan of care for people who suffer from self-neglect.

Therapeutic relationships and care coordination

Therapeutic relationships in practice are incredibly important in securing engagement with patients at risk of or suffering from self-neglect (SCIE, 2014). The nurse-patient relationship is pivotal in the quality and efficiency of care delivered and research has shown that increased patient satisfaction is associated with adherence (Ratanawongsa et al, 2013; Farley et al, 2014). High-quality care requires continuity to establish a mutual trust allowing for an authentic patient journey that develops at the patient's pace. Providing high-quality care can be somewhat of a catalyst for empowerment and involvement through shared decision-making and choice (Sharp et al, 2016). Creation of such relationships can be timely (SCIE, 2014); workforce pressures and persistent NHS understaffing pose threats to the provision of high-quality care (Care Quality Commission, 2023). Subsequently, the SCPDN role as care coordinator and leader should not be underestimated (Linnenkamp and Drenkard, 2016).

Professional curiosity and discretion should be applied respectfully and sensitively when considering self-neglect (Mantell and Jennings, 2016). Using emotional intelligence and empathy allow health professionals to understand the reason behind the self-neglecting symptoms: ‘the meaning of the mess’ (Braye et al, 2015). Not delving into the reasoning and causative factors of self-neglecting behaviours and symptoms risks manifestation and exacerbation (Thacker et al, 2019). Merely addressing the physical symptoms, such as organising a deep clean, will undoubtedly lead to recurrence, meaning careful use of language is vital (Dartington Trust, 2020). For example, referring to hoarded possessions stored throughout the person's home. Objects are often of great emotional significance, a response to trauma or serve a key function in a person's life (Braye et al, 2015). Using language such as rubbish, clutter or waste could have negative connotations, jeopardising the nurse-patient therapeutic relationship. It is important for the SCPDN to acknowledge these differences and embrace them promoting person-centred, culturally competent and inclusive care (NMC, 2022; Reeve and Lavery, 2023). Furthermore, ignorance to employ professional curiosity at both an individual and organisational level has led to previous failures in protection, sometimes at detrimental levels (Francis, 2013). SCPDNs must think critically to collaborate with vulnerable patients to agree to the required level of support, ensuring maximum independence and continuum of care (NMC, 2022).

Where possible, patients should be involved in shared decision-making and personalised care and support planning (NHS England, 2019). Consulting with the multidisciplinary team can offer invaluable advice and support. People suffering from self-neglect might benefit from referrals to the following services: clinical psychologists, community nurses, environmental health, fire and rescue, general practitioners, hospital, housing, independent advocates, occupational therapists, paramedics, physiotherapists, police, probation case managers, Royal Society for the Prevention of Cruelty to Animals, Social workers, voluntary, community and faith sectors (Merseyside Safeguarding Adults Board, 2019). However, it is vital that shared goals are considered with pragmatism, considering what matters most to the person and how best health professionals can reduce risk, rather than eliminate it completely (NHS England, 2019; Dartington Trust, 2020). SCPDNs have a responsibility to establish relationships between health and care professionals, manifested by integration of collaborative networks (Jobe et al, 2020).

As well as continuing professional development, SCPDNs must develop compassionate leadership qualities to support and lead teams promoting the health of the populations they serve (West et al, 2020; NMC, 2022). Having a heightened awareness of public health issues and acknowledging the detection and diagnosis of self-neglect is difficult. Failure to lead effectively could delay diagnosis, care and treatment for people at risk of/or suffering from self-neglect, increasing the risk of poor patient outcomes (NMC, 2022).