According to Day and McCarthy (2015), self-neglect is a serious and complex public health issue that is poorly understood and under-recognised globally. It is difficult to ascertain the prevalence of self-neglect, as cases tend to be under-reported. Community nurses have a key role to play in identifying vulnerable patients and those who are at risk of self-neglect (Day et al, 2015). Within the role of the community nurse, there are many situations in which self-neglect has been highlighted by other agencies, including care staff, as well as family, neighbours and other members of the public. From a review of the research, most information regarding self-neglect is sourced within the social care literature, highlighting limited research from a nursing perspective in the UK. Although research on self-neglect is limited in the UK, Serious Adult Reviews (SARs), which involved self-neglect, can be very informative and can be used as an evidence base to guide clinical practice.
The Care Act 2014 states that Safeguarding Adult Boards (SABs) must arrange a SAR when an adult in its area dies as a result of abuse or neglect, whether known or suspected, and there is concern that partner agencies could have worked together more effectively to protect the adult. Reviews such as those from the SABs of Hampshire (Rees, 2018) and Bath and North East Somerset (Braye and Preston-Shoot, 2018) confirmed and highlighted the need for sensitive, lawful interventions to support the person in a manner that is proportionate and appropriate to their needs. Both reviews identified similar issues, such as a lack of understanding in the application of the Mental Capacity Act (2005), limited involvement of family members in treatment-related decision-making and poor multidisciplinary working. Important lessons can be learned from these reviews, and these lessons can be applied to practice.
Up until 2015, there was very little guidance on practice with regard to self-neglect and no threshold in law for when a safeguarding referral should be investigated. This changed when the Care Act 2014 recognised self-neglect as a form of abuse and placed a duty of co-operation on all agencies to work together to help adults who are self-neglecting.
The present article intends to highlight the importance of including the concept of self-neglect as part of patient assessment for community nurses, as ignoring signs of self-neglect can have serious consequences (Day et al, 2015). An attempt to explore the definition, signs and causes of self-neglect is made, and the importance of the role of mental capacity and, in particular, executive capacity, is also explored. Finally, the importance of the community nurse including self-neglect in their assessment is highlighted.
Definition of self-neglect
Chapter 14 of the Care and Support Statutory Guidance (Department of Health and Social Care, 2018) defines self-neglect as:
‘…covering a wide range of behaviour, neglecting to care for one's personal hygiene, health or surroundings and now includes hoarding’.
Consequently, under Section 42 of the Care Act 2014, a safeguarding enquiry might be required when the person:
Signs of self-neglect
Community nurses are often asked to review patients who self-neglect in presenting as dishevelled, unkempt and living in cluttered and filthy homes (Johnson-O'Connell, 2015).
According to the West Midlands Adult Safeguarding Editorial Group (2018), other examples of potential self-neglect include the following:
Consequences of self-neglect include health issues, such as physical exacerbation of existing health conditions, pressure ulcers and skin disorders, malnutrition and, potentially, death. The psychological consequences may include anxiety and depression and a decline in cognitive function and social function. These could, in turn, lead to isolation from family and friends, infestations and fire hazards, which could place both the patient, neighbours and attending health staff at risk.
Why do people self-neglect?
The causes of self-neglect are complex, but have been found to be more common in the older male population (Dong et al, 2012; Day et al, 2015). It is also true that those most at risk may have mental health issues, including depression and dementia (Day et al, 2015). Other causes may include the inability of patients to maintain self-care and carry out household chores; domestic abuse or previous history of abuse or neglect and loss of job or status; loss of strongly held value systems and loss of independence as a result of an accident, trauma, ill health or frailty (Social Care Institute for Excellence (SCIE), 2018). Some may have behavioural issues, such as Diogenes syndrome, which is described as a behavioural disorder among older adults manifesting as extreme self-neglect, domestic squalor and a tendency to hoard excessively (Badr and Hossain, 2005).
Mental capacity
Establishing whether patients have mental capacity in relation to self-neglecting behaviours is crucial. Section 1 of the Mental Capacity Act 2005 (UK Government, 2005) sets out five principles that are intended to enable and support people who lack capacity to maximise their ability to make important decisions, including caring for themselves.
However, if in discussions with a patient, the community nurse has concerns around issues of self-neglect and the individual does not seem to appreciate the risks involved, the patient may be considered to lack capacity, and the nurse should recommend that a formal capacity assessment be carried out. Being unable to make a decision means being unable to:
The SCIE's report (2011) ‘Self-neglect and adult safeguarding: findings from research’ highlighted the difference between decisional capacity and executive capacity. When assessing mental capacity for those adults who are vulnerable to self-neglect, nurses may find that the capacity to make some decisions remains (decisional capacity), but the capacity to identify and extract oneself from harmful situations or relationships is diminished. As a result, the person may not be able to act on a decision that they have made. In these cases, the patient lacks the ability to execute their decision and thus lacks executive capacity. It is important to recognise that mental capacity not only involves the ability to understand and make the decision but also the ability to execute the decision.
There are three main scenarios related to self-neglect in which a community nurse could be involved, each of which requires a specific management strategy. First, for those patients who have capacity and have been identified as requiring care or treatment, but who decline help, the health professionals responsible for the provision of care/treatment should include and record their discussions about options for intervention and risks, if declined. The patient should be informed of all options and consequences of refusing care or treatment, and the health professionals should be confident that the patient is not being coerced into making an unwise decision.
The second scenario involves those with mental capacity where professionals feel there is serious or critical harm to a person and for which they have a duty of care to gather all the necessary information. This promotes the development of a thorough risk assessment to enable all risks and possible actions to be fully considered on a multi-agency basis, while maintaining a level of respect for the individual's decision. This does not necessarily require consent from the individual where there are serious concerns about the risk to the person.
Finally, if the patient has been assessed as lacking capacity to consent, then a decision can be made by the appropriate professional to act in the patient's best interest following a Best Interest Decision-Making Meeting, where family members may be included, as well as other professionals involved in the care of the patient. An Independent Mental Capacity Advocate to support the patient may be required, especially in relation to complex decisions for statutory purposes, such as serious medical conditions and change of accommodation. A Care Act Advocate may also be in place if there are doubts about friends or family acting in the patient's best interests. Following this, the decision may need to be heard in the Court of Protection, which may determine capacity and/or best-interest decisions where the person is objecting.
Importance of assessing self-neglect
Supporting patients with self-neglect requires a comprehensive multi-agency assessment, and nurses should not be afraid to make safeguarding referrals and to make enquiries about their patients. Essential communication skills of listening and engaging with patients and getting to know their life story are important in promoting trust. The practitioner should focus on building a relationship with the patient to persuade them, as far as possible, to receive assistance to improve their health and wellbeing, while at the same time maintaining respect for their decision. Self-neglect should not be perceived as a lifestyle choice, and early information sharing and collaboration between the appropriate agencies is a necessity. To this end, nursing professionals have a key role within multi-agency professional meetings to share information in complex cases, share responsibility and reflect on practice. Inclusion of the community nurse in local safeguarding and police working groups is vital in this sharing of information and in developing local strategies to promote a multi-agency approach.
It is important to consider the application of the Mental Capacity Act 2005 (UK Government, 2005) in determining the most appropriate management strategy and to emphasise the need for good record-keeping. Nurses should ensure that the patient understands the implications of not accepting care or treatment and that this is recorded and shared with appropriate agencies. Finally, there should be robust guidance and training to assist those practitioners working within complex areas, through regular meetings and clinical supervision.
Conclusion
Self-neglect is a serious public health concern worldwide that tends to be grossly under-reported. Given the nature of their work, community nurses are well placed to assess patients for self-neglect and take the necessary steps to help. Community nurses should be aware of legal and policy issues and treat patients as individuals, respecting their privacy and dignity. An awareness of the signs and consequences of self-neglect and the need to work closely with other colleagues in order to reduce harm is necessary. Statutory frameworks are in place to enable staff to work in partnership with other agencies in order to share skills and knowledge in their assessment and subsequent provision of care for the patient.