This chapter provides information for multi-agency practitioners about issues in relation to self-neglect, in particular includes a section on mental capacity. Whilst there may be some circumstances when a safeguarding enquiry is instigated in relation to an adult who is neglecting to care for themselves, it is more likely to be managed through planned and sensitively managed multi-agency interventions with the adult, at their own pace.
- 1. Definition
- 2. Personal choice or an inability to protect oneself?
- 3. Thresholds
- 4. Who is at Risk
- 5. Legal Framework for Responding to Self-Neglect
- 6. Self-Neglect and Mental Capacity: Practice Guidance
Self-neglect differs from the other forms of abuse because it does not involve a perpetrator. This has previously caused it to be viewed differently from other types of abuse, neglect or exploitation and was often not included by Safeguarding Adult Boards (SABs) as a type of abuse. It is a form of abuse of which there is considerable debate. Chapter 14 of the Care and Support Statutory Guidance (Department of Health and Social Care), issued under the Care Act 2014, includes self-neglect as a category under different types of abuse and neglect, but notes it may not always result in a safeguarding enquiry:
‘Self-neglect: This covers a wide range of behaviour neglecting to care for one’s personal hygiene, health or surroundings and includes behaviour such as hoarding. It should be noted that self-neglect may not prompt a section 42 enquiry’ (14.17).
Hoarding behaviour was previously seen as a symptom of obsessive compulsive disorder, but now has a separate clinical definition of ‘hoarding disorder’. This is a psychiatric disorder where the person has persistent difficulty discarding or parting with possessions (whether or not they have any value). This results in substantial materials obstructing the person’s home environment and impacts considerably on functional impairment.
Hoarding is distinct from the act of collecting, and is different from being just messy or generally untidy. The difference between a hoarder and a collector is that a hoarder will have strong emotional attachment to their items that is well in excess of their real value.
Compulsive hoarders may be conscious of their irrational behaviour but the emotional attachment to the hoarded objects far exceeds the motivation to discard the items. Many hoarders may be well presented to the outside world, appearing to cope with other aspects of their life quite well, giving no indication of their home life. Compulsive hoarding behaviour has been associated with health risks, impaired functioning, economic burden, and adverse effects on friends and family members. It could also potentially put the adult and others at risk of causing fires.
Greater Manchester Fire and Rescue Service (GMFRS) has produced a prevention and protection document relating to hoarding which provides advice for their staff based on different levels of hoarding. The guidance states that ‘where the person’s hoarding disorder puts their independence and wellbeing at risk, and / or will lead to deterioration in their ability to protect themselves from harm, a safeguarding referral should be made’. Due to the complexities of this behaviour, each case will be looked at individually and any decisions on how to progress will depend on individual circumstances. Partner agencies can refer cases of hoarding through standard referrals sent on existing templates as part of their partnership agreements. Partner agencies can also refer to the Contact Centre at GMFRS (see Local Contacts for further details).
2. Personal choice or an inability to protect oneself?
Cases of self-neglect should be considered on a case by case basis and while these cases may not prompt a s42 safeguarding enquiry, it should be remembered that there may come a time where the person who is self-neglecting may no longer be able to protect themselves (also see Section 3, Thresholds).
s42 of the Care Act places a duty on the local authority to make enquiries where abuse is suspected and the Care and Support Statutory Guidance (2016) states that the local authority should decide what should be done i.e. whether the provider should investigate in the first instance.
The Mental Capacity Act 2005 (MCA) is clear that a person must be assumed to have capacity unless there is evidence to the contrary and that a person can make a seemingly bad or unwise decision in the event that they have the capacity to do so.
The issue of self-neglect should always be considered in relation to a person’s mental capacity (see Section 6.2, Adults who have Mental Capacity). For those who have mental capacity the degree of which they have personal choice is a key consideration. The difference between being unable to care for themselves or whether they are unwilling to self-care should be the main basis for discussion.
Self-neglect covers a wide range of behaviour including, hoarding, animal collecting, non-compliance, risky behaviour, failure to eat, drink, maintain home environment, personal hygiene, financial viability, social contact, comply with treatment, and protect oneself from abuse.
The causes of self-neglect may include poor physical health, mental health, impaired physical function, poor access to support, poor financial support, pain, nutritional deficiency, past trauma including wartime experiences, loss and cumulative loss, physical / sexual abuse or drug or alcohol misuse. Older people who are identified as suffering from self-neglect are more likely to have cluttered homes and poor personal appearance and hygiene.
The diagnosis of Diogenges Syndrome was first established in 1975 and applies to people who have unkempt personal appearance, live in dirty insanitary environments, who hoard items and refuse help.
There are a wide range of experiences that may lead to self-neglect and it is therefore crucial to look beyond the immediately obvious issues of mental and physical health issues. See Section 6, Self-Neglect and Mental Capacity: Practice Guidance.
Contributory factors may include the individual’s cultural / life view. For older people this may include not wanting to complain, fear of professional intervention, fear of losing their home, pets and possessions. In addition to this self-neglect may occur due to the person’s inability or unwillingness to take care of themselves, or lack of care from informal or formal carers.
The Care Act 2014 includes the definition of self-neglect within types of abuse. However, as noted in Section 1, Definition, the Care and Support Statutory Guidance states: ‘It should be noted that self-neglect may not prompt a section 42 enquiry. An assessment should be made on a case by case basis. A decision on whether a response is required under safeguarding will depend on the adult’s ability to protect themselves by controlling their own behaviour. There may come a point when they are no longer able to do this, without external support.’
It is important that any professional who receives an enquiry, concern or referral that might indicate self-neglect, including staff in adult social care who are implementing eligibility criteria, should discuss the adult with their line manager / designated adult safeguarding lead. A referral to the adult safeguarding team should be made if it is decided that such action is appropriate (see 2.3 Stage 3: Planning Discussion or Meeting).
Self-neglect may be a matter of personal choice and autonomy or it may be an inability of the person to protect themselves. In either case, the Local Government and Social Care Ombudsman and the Health Ombudsman have stated that a local authority will have failed in its duty to investigate in cases of self-neglect where there is a risk of serious harm.
4. Who is at Risk
Self-neglect is mostly an issue for older people. As people are living longer there will therefore be an increased incidence of mental health, chronic and degenerative physical illness, isolation and depression. It is therefore likely that the incidence of self-neglect will also increase.
It does, however, also affect younger people. There is usually no incidence of hoarding but indicators for younger people may include; squalled living conditions, mental health problems, drug or alcohol misuse, chaotic lifestyles, attempts at reform, or spirals of dependency. Younger people often maintain social contact – although this may be difficult – with family, friends and statutory services though they may feel that they have been failed by services and professionals.
Self-neglect is therefore dependent on complex health and social circumstances and an individual’s ability and willingness to deal with these issues.
5. Legal Framework for Responding to Self-Neglect
Cases of actual or suspected self-neglect often present and a complex situation in which personal autonomy has to be balanced against protection of the individual and others.
It is therefore crucial to assess capacity prior to considering any legal interventions (see Section 6, Self-Neglect and Mental Capacity: Practice Guidance). Relevant legal statutes include:
- Human Rights Act 1998 – Article 8 Right to Privacy and Family Life, Article 2 Right to Life and Article 3 Prohibition of Inhuman or Degrading Treatment;
- Data Protection Act 2018;
- Mental Capacity Act 2005* (see also Section 6, Self-Neglect and Mental Capacity: Practice Guidance).
The starting point for working with clients at risk of or suffering from self-neglect should be negotiation and relationship building. Following this consideration should be given to a mental capacity assessment. If agreement cannot be reached with the adult, and the mental capacity assessment has shown they have capacity, legal intervention may be indicated.
There are a number of areas of the law available that can assist in cases of self-neglect including:
- police to forcibly gain access (if there is a risk to life or limb and / or to prevent a breach of the peace);
- Approved Mental Health Professional (AMHP) can apply to a Magistrates Court for warrant to remove a person for up to 72 hours to a place of safety if it is deemed they are suffering from a mental disorder;
- A High Court order could be sought for those suffering from self-neglect, to place them elsewhere in their best interests if the risks were very high (although this is rarely used as the courts consider this to be state interference to a great degree);
- environmental health enforcing clearing of insanitary conditions;
- appointment of guardian (can be used to compel a person to reside at a specific address and report to health and social care professionals. There is a power to recall the person if they abscond).
- animal welfare laws.
*In relation to the MCA, a local authority could apply to the Court of Protection for an order to enter the premises and potentially remove a person who is lacking capacity and suffering from self-neglect, in their best interests. This is a common approach for local authorities as a way of safeguarding a person who is suffering from self-neglect and who lacks capacity to decide on their place of care and residence. They are often placed in a care or nursing home where they may be the subject of Deprivation of Liberty Safeguards (see Deprivation of Liberty Safeguards). The crucial elements in the Court of Protection’s decision are the person’s capacity and best interests.
6. Self-Neglect and Mental Capacity: Practice Guidance
Whether or not an adult who is self-neglecting has mental capacity, is a key consideration in the discussion as to whether or not a safeguarding referral should be made (see 2.3 Stage 3: Planning Discussion or Meeting).
Cases of adults who self-neglect pose specific management challenges in balancing the needs and rights of the individual and the duty of the authority to protect the individual and others from harm. They often pose professional, ethical and practical challenges that need to be considered by staff on a case by case.
It should be noted that the perception of the professional and the individual, public and family may be at odds. There may also be differences of opinion between professionals.
6.1 Adults who do not have mental capacity
Where it is considered an adult who is self-neglecting may not have mental capacity, an assessment of their capacity should be undertaken. The assessment must consider fluctuating capacity and the difference between decisional capacity (ability to make decisions) and executive capacity (ability to implement decisions), as these issues are key in cases of self-neglect. If the assessment concludes the adult does not have capacity, an Independent Mental Capacity Advocate (IMCA) should be appointed, a care and support plan agreed between all parties, including the adult where possible, and regularly reviewed. Whether the care and support plan will enable the adult to remain in their own home will depend on the individual case, the results of conducting a risk assessment and the support networks available.
In addition to best interest assessments under the MCA, screening for dementia, depression and cognitive impairment should be central to assessments, in order to help clarify the balance between preserving the adult’s autonomy and protecting them.
Even where capacity is assessed to be lacking, there is still an obligation and a duty to apply the least restrictive measures of intervention. However, there are limits to an individual’s autonomy; family, professionals and the wider community should not be exposed to unacceptable risks. In order to ensure that action taken to preserve autonomy and protect from harm, many aspects of the situation and the individual’s circumstances must be taken into account.
6.2 Adults who have mental capacity
Self-neglect is a complex phenomenon and great emphasis needs to be given to eliciting the adult’s unique circumstances and their perception of the situation as part of the assessment intervention. There are many grey areas in cases of self-neglect, where careful assessment is needed in order to avoid ambiguity or value judgements.
For people who have been assessed to have mental capacity to make decisions but who are at risk of or are suffering self-neglect, complex case management / social work may be needed as an intervention in its own right. Due to the complexity of the situation it may be necessary to take time to build a relationship of trust with the person and be creative in providing support.
6.2.1. Management and assessment of risk
There are a number of initial steps that professionals should take with adults with mental capacity who self-neglect.
- Talk to the adult about the concerns, and ascertain their views and wishes in relation to their current situation. This will include understanding any cultural issues that may be relevant.
- Find out what is happening in the adult’s life that may be contributing to their self-neglect; it may take time for the adult to be able to disclose related issues.
- Conduct a risk assessment including does the adult acknowledge there is a problem; do they recognise the validity of any concerns expressed by family, friends, neighbours or other professionals; do they understand the risk they may pose to themselves or others?
- Be satisfied about their ability to make decision, and that they have mental capacity.
- Check as to whether there may be any issues of undue influence, pressure or exploitation.
- Check for obvious signs of ill health.
- Consensus, negotiation, building a positive relationship and persuasion are important interventions in supporting those at risk of or suffering from self-neglect. Acceptance of help may be dependent on how this is offered. This can take time and will need to take place over time. This person centred approach listens to the adult’s own view of their situation and seeks informed consent where possible prior to any other intervention.
Given that resistance to support is a central element of self-neglect, simple and small initial interventions can be of great significance and should not be overlooked or undervalued. Simple support in the form of shopping, cooking or companionship may produce improvements and create an environment for the development of more extensive support. Building good relationships and maintaining contact can enable interventions to be accepted and situations to be monitored.
Risk assessment is key to the management of self-neglect and can be assisted by suitable tools. However these may not always be able to cover the wide variety of situations of self-neglect, so care should be taken to use these in addition to risk assessment and not as a replacement.
Risk management is crucial to support work in such complex situations. Assessment tools may be of help in addition to interviewing skills that allow the worker to draw out individual views and ways of coping and assess how far these would be amenable to change and how this might take place. Such assessment needs to have a focus on future change as well as current risk.
For people who do not wish to move into long term care, consideration should be given to the use of day hospital support.
Sensitive and comprehensive assessment with accurate non-value laden information is essential and should include the following areas:
- personality traits and lifestyle;
- stressful events, including loss;
- physical injury and health;
- family dynamics;
- depression or dementia;
- cultural beliefs;
- coping patterns;
- willingness of the adult to accept support;
- views of family members and carers included in assessments;
- observations of the home circumstances;
- issues of daily living including nutrition, regular activities, social support.
Case management should be outcome focused and reviewed on a regular basis. A degree of curiosity, imagination and creativity coupled with an ability to appropriately challenge current coping mechanisms and to record findings and thinking are important skills in assessment (see Record Keeping).
If the adult is willing, a care and support plan should be drawn up and regularly reviewed with them and other involved professionals. This will include interventions that will reduce or eliminate the self-neglect to the adult and those who may also be at risk such as neighbours. If this is not successful a safeguarding referral may have to be made (see Responding to Signs of Abuse or Neglect is Everybody’s Business).
6.2.2 Multi-agency response
Safeguarding is a multi-agency responsibility. Decisions about intervention in cases of suspected or actual self-neglect can be complicated and will therefore be assisted by a structure of inter-agency communication and sharing of risk.
Under the Care Act 2014 the local authority has a duty to make enquiries where abuse is suspected. The Care and Support Statutory Guidance (2016) requires the authority to decide what should then be done – i.e. which agency is to lead the investigation.
The sheer complexity of the multitude of causes that may be involved in any case indicates that a multi-agency strategy is vital.
In such a potentially confusing and complicated picture multi-dimensional, multi-agency approach to assessment of medical, psychological and social needs is crucial. This is best done in a formal multi-agency framework.
Other key assessments may include:
- domiciliary care;
- substance misuse;
- mental health;
- occupational therapy;
- environmental health;
- welfare benefits.
See Record Keeping.
Recording in these complex cases is a crucial element in managing the risk for the individual. It is also essential for the local authority to be able to demonstrate proper process has been followed and that action taken has been reasonable and proportionate. It provides an audit trail for the options and actions considered.
Recording should include:
- the adult’s history including social, emotional, mental and physical health;
- current presenting issues recorded in fact with observed evidence and using the adult’s own words where possible;
- a risk assessment of the current situation based on evidence and observation. This should include actual risk and potential risk using risk assessment tools as appropriate;
- multi-disciplinary assessments should be sought and included in the overall assessment of risk;
- a summary of risk and professional analysis and thinking;
- risk management /safety plan to address areas of risk identified including multi-agency agreements of interventions and deadlines. This should include explicit identification of planned actions and interventions even if it was not possible to implement these. Recording should include the reasons why implementation so that it was clear that full assessment and planning has taken place even if implementation has not been possible.
It is common in cases of self-neglect for the adult to refuse all interventions and support, in which case the level of risk cannot be reduced. In this case records which demonstrate how risks have been evaluated and weighed against issues of the individual’s autonomy and their protection will be vital.
Although this is a complex area of work, proper recording and information sharing supports defensible decision making. It also captures the decision making process and demonstrates how interventions were planned, why, with what purpose and by whom.
6.4 Information sharing
Sharing of information as appropriate, with managers, colleagues and multi-agency partners, is crucial to ensure that a full picture of the situation is available to all involved. This is pertinent at all stages of involvement with the adult, from initial contact to review of any safeguarding plan that is put in place. As issues of professional trust are often key for adults who self-neglect, it is vital that where professionals share information with colleagues they first inform the adult wherever possible. See also Information Sharing and Confidentiality.
6.5 Safeguarding Adult Reviews and learning points
Some Safeguarding Adult Reviews (SARs) have had self-neglect as a central issue, often in conjunction with other complex issues (for example A Serious Case Review in Respect of A2 Birmingham Safeguarding Adults Board, 2012)
Such SARs have found:
- professionals often have limited knowledge of each other’s roles;
- a comprehensive overview of the case was often found to be lacking;
- liaison between professionals was sometimes ad hoc and dependent on individuals rather than formal procedures;
- there was a degree of uncertainty between organisations about what constituted self-neglect;
- learning points have included the need for practice guidance generally, and specifically in terms of case recording;
- local authorities do not always have appropriate risk management and review structures, and that care needs to be taken in closing cases where it is felt that ‘everything has been tried’;
- in cases where services and support are refused, monitoring at a low level should continue in order to ensure a mechanism is in place to pick up changes which may lead to increased risk and indicate the need for further assessment.
Raising public awareness is important both to help identify and respond appropriately to adults who self-neglect and increase understanding of the role of statutory and partner agencies. The public are generally less likely to understand the role of these agencies, and the issues of individual autonomy and adult safeguarding.
Professionals should also be mindful of potential discrimination that adults who evidently self-neglect may be subjected to by some members of the public. Such action may also warrant an adult safeguarding referral.