Self Neglect Briefings for Practitioners

Self-Neglect: Definition

Self-neglect covers a wide range of behaviour relating to care for one’s personal hygiene, health or surroundings, and includes behaviour such as hoarding. Three recognised forms of self-neglect include:

• Lack of self-care – this may include neglecting personal hygiene, nutrition and hydration or health (e.g. non-attendance at medical appointments/not taking medication as needed)
• Lack of care of one’s environment – this may result in unpleasant or dirty home conditions, and increased risk of fire due to hoarding
• Refusal of services that could alleviate the above

What to look for:

Self-Neglect can happen anywhere (including health & care settings), However, adults who self-neglect are more likely to live alone, be an older person, experience mental ill-health, have alcohol or drug problems and have a history of poor personal hygiene or living conditions. Signs include:

• Not enough food, or food is rotten
• The home is filthy, odorous, hazardous or unsafe
• Major repairs/maintenance to the home is required
• Presence of human or animal faeces in the home
• Accumulation of possessions
• A large number of pets and/or abuse or neglect of pets
• The adult may:
  • Have dirty hair, nails and skin
  • Smell of urine and/or faeces
  • Have skin rashes or pressure ulcers
  • Have a poor diet and/or hydration
  • Show increased confusion or disorientation    
  • Have deteriorating physical or mental health e.g. diabetes, dementia
  • Be socially isolated

Mental Capacity

The Mental Capacity Act is a law that defines mental capacity for a specific decision as the ability to understand, retain, use or weigh up and communicate the information relevant to the decision. Executive functioning is the ability to think, act, and solve problems, using the information learned and remembered. Capacity and executive functioning in respect of decision making is important for practice but on some occasions, capacity is used to justify not intervening in cases of probable self-neglect, therefore leaving people at considerable risk. Promoting autonomy and supporting protection should not be mutually exclusive but balanced to best serve people experiencing self-neglect. Consideration should also be given to Making Safeguarding Personal and building a trusting relationship with the person in order to help them achieve their desired outcomes.

One of the first considerations should be whether the person has mental capacity to understand the risks associated with the actions/lack of actions.  Any action proposed must be with the person’s consent, where they have mental capacity, unless there is a risk to others (such as a fire risk due to hoarding, or public health concerns).  In extreme cases of self-neglect and/or hoarding behaviour, the very nature of the environment should lead professionals to question whether the person has capacity to consent to the proposed action or intervention and trigger a mental capacity assessment.  Consider if the person has the functional capacity to make a particular decision and executive functioning which is their ability to carry out the decision.  Please see links below for further information on Mental Capacity and executive functioning. 

The Care Act Statutory Guidance recognises it can be difficult to distinguish between whether a person is making a capacitated choice to live in a particular way (which may be described as an unwise choice or decision) or whether:

• The person lacks mental capacity to make the decision; or
• There is concern regarding the adult’s ability to protect themselves by controlling their own behaviour

Key Learning

Professional Curiosity

Professional curiosity is about exploring and understanding what is happening with an individual and/or within a family. It is about:

• Enquiring deeper and using proactive questioning and appropriate challenge
• Understanding one’s own responsibility and knowing when to act, rather than making assumptions or taking things at ‘face value’
• Thinking ‘outside the box’, beyond a practitioner’s usual professional role, considering all of the individual’s/family’s circumstances holistically and using a trauma-informed approach.
• Being curious, engaging with individuals and families through visits, conversations, asking relevant questions – gathering historical and current information

Language

Language (both that which is written/typed and spoken words) used by professionals about individuals who self-neglect should be respectful of the person, not judgemental, and should also follow Making Safeguarding Personal principles. 

Using positive, respectful language can build trust and lead to better outcomes for the individual, as they are more likely to engage with any suggested changes, services or interventions. 

Engagement

Individuals who self-neglect often decline support and may not identify that they need support. Due to the nature of self-neglect, be mindful that engagement may take time and fluctuate.

Advocacy is taking action to support people to say what they want, secure their rights, pursue their interests and obtain services they need. Advocacy providers and Advocates work in partnership with the people they support and take their side, promoting social inclusion, equality and social justice.

Strengthening the role of Advocacy in Making Safeguarding Personal

Consideration must be given to the use of more creative ways to engage adults and their families which promote effective relationship building, engagement and not disengagement. Where a person has been subject to safeguarding interventions, all partners should consider how they involve the person and their family from the very outset of those enquiries and how statutory and non-statutory advocacy can support this including consideration of Carers Assessments for those who are part of the person’s family and wider support network.

Multi-Agency Roles and Responsibilities

Successful intervention is more likely when different services work together to identify solutions and look at a person’s needs as a whole. Consider a Multi-disciplinary team meeting approach and identify a key worker through which care and support is coordinated by a named team member. While things like cleaning interventions may provide a short-term solution to self-neglect and/or hoarding, longer-term solutions should be sought as part of an integrated multi-agency plan. The aim is to prevent serious injury or death of the individuals by ensuring that:

• The person is empowered as far as possible to make their own decisions and to make changes to their circumstances that lead to positive outcomes
• There is a shared, multi-agency understanding and recognition of issues
• There is effective and practical multi-agency working, which challenges practice and ensures that concerns/risks receive appropriate prioritisation
• All interventions to work with an individual who has self-neglecting and/or hoarding behaviours are based on the principles of making safeguarding personal
• All agencies and organisations uphold their duties of care

Raising A Safeguarding Concern

Responding to self-neglect depends upon the level of risk or harm posed to the person and/or others, and whether the person is able to protect themselves and determine their own action. Workers should refer to their local safeguarding adults’ guidance to determine whether a safeguarding concern should be raised. The person who has the concern should raise the Concern.

Links to further information

What to do about Self-Neglect Animation [You tube]

DSP Self-neglect and Hoarding Guidance and Resources

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

Self-Neglect at a Glance - SCIE [external link]

Ann Craft Trust [external link]

Overview

The Issue

• Self-neglect can impact on an adult’s wellbeing but the cause of this is not directly a result of physical or mental impairment or illness but arises from acts of their own, such as drug and alcohol misuse and risks associated with this.
• Attachment to their substance of choice and prioritising this above all else, can impact on their relationship with others.
• Definition of addiction is the loss of the ability to make choices.  The Latin meaning for addiction implies enslavement.

Links to Abuse and Neglect

• Increased risk of deterioration in physical and mental health.
• Risk of overdose or contaminated substances if drugs purchased on the street.
• Risk of engaging in criminal activity to fund drug or alcohol use.
• Increased risk of violence from others.
• Exploitation by others, including sexual exploitation.
• Increased risk of domestic abuse.
• Increased risk of suicide or misadventure.
• Financial difficulties can occur due to expenditure on drugs/alcohol resulting in debts and inability to pay for basic needs.
• Increased risk of homelessness if unable to adhere to tenancy agreements.
• Emotional or psychological harm due to increased social isolation.

A Multi-Agency Response

Self-neglect cases involving drug and alcohol misuse require a multi-agency response, whether this is under safeguarding adults’ procedures or as part of multi-disciplinary working more generally.  There needs to be a clear understanding of the person’s needs as a whole (not just in relation to their substance misuse).  A multi-agency approach often works well, with a core group of professionals established to closely monitor risks and the plans to manage risks.

Mental Capacity

Learning from Safeguarding Adults Reviews (SARs) involving alcohol and substance misuse often focuses upon the lack of practical application of the Mental Capacity Act. Understanding the mental capacity of the person is crucial to managing risks associated with drug and alcohol misuse.  This will often require a Mental Capacity Assessment. 

Practitioners should ensure that the risks around a particular decision are clearly and honestly explained to allow the person to make an informed choice. This might involve telling someone that they are putting their life at risk.  Learning from cases has also highlighted the need to consider executive functioning – a person’s ability to implement a decision they have made.

Key Learning

Key Points to Consider

• Alcohol and drug misuse can sometimes play a significant role in the lives of adults with care and support needs.
• Alcohol is a causal factor in more than 60 medical conditions (Alcohol Change UK).
• Whilst domestic abuse can be associated with drug and alcohol misuse there could also be other underlying issues for example controlling and coercive behaviour, the normalisation of abuse and social isolation etc.
• Learning from alcohol related Safeguarding Adults Reviews identified 45% had self-neglect as a type of abuse. In 25% of these the principal focus was on a person with alcohol related concerns.

Engagement

• Implementing change can be difficult due to other risks associated with drug and alcohol.
• Peer groups can impact on a person’s engagement with services.
• Non-engagement with services may result in increased risks associated with substance misuse e.g. the type of substance used, quantity of substance, how substance is taken.  
• It is widely recognised that cases involving those who misuse drugs and alcohol must often be dealt with outside usual prescribed timescales of the safeguarding adults processes.
• Professionals must work to forge relationships with individuals to gain their trust and confidence – consider key worker(s) / advocacy.
• Several attempts at engagement may be necessary before an individual begins to engage. It is important not to sever contact with an individual who is displaying self-neglect/risk taking behaviour based on their refusal to engage with services, regardless of their mental capacity.
• Consider Carer Assessments

Know when to seek Support/ Escalate

Where concerns persist and/or risks increase, there may be a need to seek additional advice and support.

This might be from legal services, senior managers and/or safeguarding/MCA specialists.

Missing Persons

Consideration should always be given as to whether the person is missing, at risk of or has been missing in the past. Those with Substance Misuse and Alcohol issues or those who are homeless have increased vulnerability – is their history always considered as much as it should be and are there cross boundary conversations which promote due diligence around safeguarding? Refer to your own local protocols around Missing Adults and the appropriate response pathway.

Questions for you to Consider

• Do you understand the causes of the person’s addiction to alcohol and drug use and their lived experience?
• Have you communicated and shared information with professionals in other agencies, in particular those working in drug and alcohol services and safeguarding specialists.
• Are you clear about any informal carer arrangements? Have informal carers been offered support in their caring role?
• Have you assessed the person’s mental capacity in relation to the risks they are taking? Has this been done recently, and has it been formally recorded?
• Have there been full and frank conversations with the person about the impact drug and alcohol misuse is having on their own wellbeing?
• Do they fully understand the steps involved to access the support they need?

Links to Further Information

DSP Self-neglect and Hoarding Guidance and Resources 

Self-Neglect at a Glance - SCIE [external link]

Alcohol Change UK [external Link]

How to use Legal Powers to safeguard highly vulnerable dependent drinkers - Alcohol Change UK [external link]

The Issue

The Care Act 2014 incorporated self-neglect as an abuse category, recognising that self-neglect is a safeguarding concern for those adults in receipt of, or in need of care and support, when their health and well-being is being seriously compromised. There are many reasons why an individual may self-neglect, including previous trauma, enduring and deteriorating physical and/or mental health conditions e.g. dementia, and addictions. Individuals who self-neglect often decline support and may not identify that they need support.  There may be a limit to what professionals and family, friends and neighbours can do, if the adult is deemed to have mental capacity regarding how they live.

Reasons why Engagement may take more time

• The person may be embarrassed to have visitors and withdraw from family, friends, their community and professionals, becoming socially isolated.

• Anxiety, shame, fear and feeling overwhelmed can be contributory factors to refusing to engage and sustaining engagement with others, including professionals.

• Refusal of support – this may be for many different reasons, but if there are concerns, it is important not to walk away.

• The person may have an excessive attachment to possessions, or be a rescuer of animals, due to issues with emotional attachment which can relate to previous trauma.

• The person may have lived in a particular way for many years, with deteriorating health exacerbating the risks to themselves and others.

• Anti-social behaviour.

• Mental health issues.

• The person may have communication needs, making engagement more difficult for them.

Engagement

• Confirm with the person their preferred form of communication.
• Understand it may take time to develop rapport and trust: talking about the person’s interests and what is important to them at their pace, is the first step.
• Promote consistency where possible – time limited work and short-term interventions are proven not to work.
• Be person-led: the person’s wishes should always be considered, in line with risk thresholds and assessment of any immediate risk to the person or others.
• Be respectful.
• Understanding a person’s journey can help them and you. Identify how they can be best supported.
• Use the Mental Capacity Act to empower and support with decision making.

Engagement and Risk

• Communicate about risk openly and honestly with all involved, including the person.
• The autonomy of an adult with capacity should be respected, including their right to make what others might consider to be an unwise decision. However, this does not mean the outcome should be no further action. Sustaining engagement is fundamental approach being taken.
• Ensure there is a multi-agency approach and meeting(s) so that risk is a shared responsibility. This may be under safeguarding procedures, depending on the level of risk.
• If the person is not seen or professionals lose contact – consider at the planning stage, what is the escalation plan/risks?
• Is there a contingency plan in place: if needs change/ risks increase, co-ordinated with the person and the agencies working with them?
• Be mindful of the ‘perfect storm’; a person’s reluctance to engage alongside an organisation being stretched for resources, can lead to unmanaged risk.

Team around the Person

• Where possible, identify a professional(s) who will take the lead; a key worker(s) who knows or can support the person best or consider advocacy.
• Identify who is providing informal support (such as informal carers) and whether they can continue to provide this: sometimes assumptions are made about what support is being provided, when it is not, or circumstances have changed. Consider Carer Assessments. The positive support from a carer can also mask the signs of self-neglect.
• It is important that professionals offer flexible and creative solutions. This will promote engagement. Consider reasons why someone may not attend  appointments – for example limited access to transport/money.  
• Can reasonable adjustments be made to enhance someone’s engagement/ involvement, communication and understanding?
• Be empathic and non-judgemental.
• Be tenacious in your engagement. It may take a long time to develop trust.

Links to Further Information

DSP Self-neglect and Hoarding Guidance and Resources 

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

Self-Neglect at a Glance - SCIE [external link]

The Issue

The Care Act 2014 introduced self-neglect as an abuse category, recognising that self-neglect is a safeguarding concern for those adults in receipt of, or in need of care and support, when their health and wellbeing is being seriously compromised.

Self-neglect is a complex area with a range of causes. It may involve hoarding, neglect of personal care and/or living environment.

Trauma has been shown to impact on a person’s ability to cope, their sense of safety, ability to self-regulate, sense of self, perception of control and interpersonal relationships.

Trauma can occur at any age and result in long-lasting harm.  A person’s response to trauma can materialise in different ways, over a short time or a longer period. 

Several Safeguarding Adult Reviews have identified that childhood and adult trauma can have a significant impact on a person’s ability to thrive. Trauma had been a common feature of adults reviewed.

Understanding Adversity and Trauma

Adversity and trauma affect all of us. Not all who have experienced adversity will become known to services, but those we support are more likely to have experienced adversity and trauma.

Adversity can be highly stressful and potentially traumatic, events or situations. It can be a single event, or prolonged threats to, and breaches of a person’s safety, security, trust or bodily integrity.” (Young Minds 2021)

Trauma is not what happens to you, it is what happens inside of you as a result of what happened to you. Nothing overtly dramatic needs to happen to induce trauma: it is sufficient that they are wounded without an immediate capacity to heal the wound. (Dr Gabor Mate).

Examples of adverse situations:

• Experiencing abuse or neglect as a child or adult
• Bereavement and survivorship
• Household/family adversity – substance misuse, homelessness, poverty, family breakdown
• Forced imprisonment or institutionalisation
• Experiencing prejudice
• Being a young carer or involved in child labour
• Adjustment – moving to a new area, asylum seeking

The Impact of Trauma

• Trauma may result from a single event or multiple events, or a sustained event(s)
• Trauma can influence the way a person relates to their situation and to others
• Substance misuse, mental health problems, homelessness, self-harm, being in a domestically abusive relationship, exploited or being in the criminal justice system are often symptomatic of past trauma
• For a person who has experienced trauma, a lack of supportive relationships can result in emotional and learning difficulties, engagement in health-harming behaviour, experience of ill health, disrupted nervous, hormonal, and immune systems, or being involved in violence or a victim or survivor of violence.
• Experience of trauma can manifest in many ways, including angry outbursts, distrust, anxiety, poor impulse control, hypervigilance, addictions, feelings of guilt and shame or perceived hostility in others.

A Trauma Informed Approach

Consider the Approach

• Professionals need to pause and consider the role of trauma and the potential impact on the lives of those we work with.
• Consider whether a different approach needs to be taken, due to a past traumatic event.
• How might we be perceived- judgemental, or removed, authoritative?
• Without the right support, trauma can have enduring negative effects on a person’s physical and mental health and well-being and their life outcomes

The Principles of a Trauma-Informed Approach

• Acceptance and acknowledgement
• Be curious and open minded
• Actively listen
• Be empathic and compassionate
• Be reliable
• Be mindful that what is shared, may impact on you, and ensure you seek support
• Bear in mind that trauma can lead to a “fight or flight” response. This should not be mistaken for disengagement

How do we break these Barriers Down

• Support, safety, choice, and control can promote healing
• Take a person-centred, strength-based approach – find out what is working well
• Be mindful of the language used. We should avoid language that could retraumatise or stigmatise 
• Validating the person’s feelings

What can help?

• Stability and consistency
• Developing friendships, hobbies, interests, and support networks
• Counselling – Cognitive Behavioural Therapy (CBT), trauma-specific therapy
• Alternative therapies e.g., art therapy, animal therapy, walking therapy and meditation
• A multi-agency approach to meeting a person’s needs

Team Around the Person

• Where possible, identify a professional(s) who will take the lead a key worker(s) who knows or can support the person best.
• Identify who is providing informal support and whether they can continue to provide this. Sometimes assumptions are made about what support is being provided when it is not, or when circumstances have changed.
• It is important that professionals offer flexible and creative solutions. This will promote engagement.
• Be empathic and non-judgemental
• Be tenacious in your engagement. It may take a long time to develop trust.
• Develop a relationship based on trust and honesty.

Links to Further Information

DSP Self-neglect and Hoarding Guidance and Resources 

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

Self-Neglect at a Glance - SCIE [external link]

What is Homelessness?

Though homelessness is traditionally associated with rough sleeping, it is now accepted to be broader than that. The term covers a spectrum of living situations notable by the absence of safety, security and stability, including:

• People residing in temporary accommodation: night or winter shelters, hostels, B&Bs, women’s refuges
• ‘Statutory homeless’: people who local authorities have a legal duty to secure a home for
• People sleeping rough: sleeping in the open air, or in places not designed for human occupancy
• Hidden homeless: staying with friends/ family/acquaintances, ‘couch-surfing’ or ‘squatting’

Homelessness and Self Neglect – Cause and Effect

Adults who are homeless have a range of housing and support needs and are often vulnerable or contribute to the vulnerability of others. Effective homelessness prevention strategies must include a broad plan of action across all sectors which includes addressing health and care needs. 

According to a thematic review of Safeguarding Adult Reviews (SARs) there are multiple routes into homelessness, including relationship breakdown, poverty, unemployment, no recourse to public funds, domestic abuse, cuckooing and/or an inability to sustain placements due to anti-social behaviour and/or aggression and exploitation by others.  These routes into homelessness are often accompanied by a lived experience that includes adverse childhood experiences, loss and trauma, mental health problems, physical ill-health and/or disability, suicidal ideation, substance misuse and self-neglect (Homeless Link 2021).

Self-Neglect can manifest itself in a multitude of ways and is often accelerated by the absence of safety, security and stability.  It can be both the cause and/or the effect of homelessness.

Response

• Duty To Refer – The Homelessness Reduction Act 2017 ‘Duty to Refer’ means that partner agencies must consider the housing circumstances of any person who has engaged with them.  If any housing issues are identified, partner agencies must make a referral to the local authority homelessness/housing options team, with the person’s consent
• Consider raising a statutory Safeguarding Adults Concern – When there is evidence that a homeless adult with care and support needs is at risk of abuse or neglect, a safeguarding concern should be raised in line with multi-agency safeguarding adults’ procedures. Even if the harm is believed to be caused by self-neglect, and the adult is assumed to have mental capacity to make the decisions resulting in self-neglect, safeguarding adults’ policies and procedures should still be applied (See Eva SAR, Sunderland 2018).
• Multi-Agency Working – If the statutory Safeguarding duty is not met, then consider initiating collaborative working supported by existing legislation to support the adult’s wellbeing i.e. Care Act 2014, Equality Act 2010, Human Rights Act 1998, Housing Act 1996, Mental Capacity Act 2005, Mental Health Act 1983 and Homelessness Reduction Act 2017

Missing Persons

Consideration should always be given as to whether the person is missing, at risk of or has been missing in the past. Those with Substance Misuse and Alcohol issues or those who are homeless have increased vulnerability – is their history always considered as much as it should be and are there cross boundary conversations which promote due diligence around safeguarding? Refer to your own local protocols around Missing Adults and the appropriate response pathway.

Key Learning

A Multi-Agency Response

A multi-agency response is required to ensure that:

• information is shared, enabling a shared understanding of risk and needs
• a jointly owned plan is developed
• assessments are co-ordinated (integrated where possible) and timely
• organisations are challenged to try different approaches.

Use of Language

To see someone as choosing this lifestyle is not only inaccurate but is likely to hinder the provision of care and use of appropriate legal frameworks.

Positive Attitudes

Practitioners must have a positive and non-judgemental attitude towards working with homeless adults, with the belief that there are things that can be done to make a difference.  This requires a non-discriminatory response, relationship-building skills, empathy and creativity. 

Professional curiosity is needed to explore whether a person is unwilling and / or unable to address their circumstances. Lack of engagement or non-engagement does not mean we give up.

Person Centred

Ask ‘What do YOU want’

Wherever possible actions and decisions should involve the adult – taking into account wishes, feelings, views, experiences, needs and desired outcomes in accordance with the Making Safeguarding Personal Principles.

Engagement should be persistent and consistent rather than reactive and episodic.

An assertive outreach approach is more likely to be effective in generating prolonged engagement with a homeless adult.

Consider advocacy.

Questions for you to Consider

• Have you had a full and frank conversation with the homeless adult to identify the risks associated with their self-neglect, and to agree what support they may need to meet their desired outcomes?  Have you said: ‘What do you want’?
• Are you aware of the Homelessness Reduction Act 2017 Duty to Refer?  Do you know the referral pathway within your own locality?
• Are all the necessary partners involved in a collaborative approach?  Are you aware of the services that are operating in your locality and who can provide support?
• What legal frameworks can you use to encourage partners to become engaged in supporting a homeless adult who is self-neglecting?
• Have you analysed the barriers to engagement – consider lack of a clock, watch or mobile phone, levels of literacy, language, mobility/ability to access transport, lack of address for correspondence, not registered with GP….
• When faced with service refusal or lack of engagement, have you recognised that this may be due to past experience, trauma, loss or fear?  This will require a different approach which is guided by a comprehensive shared risk assessment, and the exploration of options within the statutory frameworks which enable the adult to make their own choices.
• Does the person have a support network in place i.e. family, friends, key worker or carers, who could be involved in assessments and help to understand the adult’s personal history and current circumstances?  This is often invaluable to understand the needs of the adult and promote their voice within discussions.
• Thorough Mental Capacity Assessments will take time and require multi-agency discussion and professional challenge.  Executive functioning should be included explicitly in assessments, linked to the person’s ability to use and weigh information.

REMEMBER – It is a myth that there is nothing that can be done for a homeless adult who is self-neglecting and does not want to engage, if they have mental capacity.

Links to Further Information

DSP Self-neglect and Hoarding Guidance and Resources 

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

LGA - Adult safeguarding and homelessness - Experience informed practice and briefing on positive practice [external link]

Self-Neglect at a Glance - SCIE [external link]

The Issue

A lack of self-care is one aspect of self-neglect, it includes neglecting personal hygiene, health, nutrition, or hydration, to such an extent that it endangers the person’s health, safety and/or wellbeing. It can include not taking medication, not following professional advice about health or care needs, refusing care, support or treatment, self-harm, not going to appointments, not seeking assistance for medical issues, not going to the toilet, not washing, not eating/drinking or other dietary conditions. In the most serious cases a person’s life might be at risk as a result of neglecting their health and care needs.

Mental Capacity

Learning from Safeguarding Adults Reviews in this area often centres on mental capacity. Practitioners should:

• Ensure that formal capacity assessments in relation to health, care and treatment decisions have been completed, and are recent.
• Ensure the assessment is carried out by the person who would be responsible for making the decision if the person were unable to do so themselves.
• Consider whether a person’s deteriorating health (physical or mental) is impacting upon their mental capacity.
• Ensure that the risks around a particular decision are clearly and honestly explained to allow the person to make an informed choice. This might involve telling someone that they are putting their life at risk. 
• Consider whether a person has executive functioning – a person’s ability to implement a decision they have made.

A Multi-Agency Response

Self-neglect cases often require a multi-agency response, whether this is under safeguarding adults’ procedures or as part of multi-disciplinary working more generally. There needs to be a clear understanding of the person’s needs as a whole.  A multi-agency approach often works well, with a core group of professionals established to closely monitor risks and the plans to manage risks. Where someone is neglecting their self-care, health professionals (particularly GPs and community nurses) are likely to be crucial to understanding and managing risks. It is essential that health professionals are involved in Section 42 enquiries involving someone who is neglecting their health or care needs.

Informal Carers

Many people are supported by informal carers – family members, friends or neighbours – providing regular unpaid help and assistance to a person. They might help with personal care, shopping, food preparation or cleaning. They might not be recognised as a carer by professionals or identify as one themselves.

Learning from self-neglect cases tells us we need to pay close attention to the role informal carers play. There needs to be a clear understanding of the level of support they are providing and how often. They should be identified on professional records as a person’s informal carer. It needs to be considered whether the carer has any needs of their own and any contingency arrangements should there be a breakdown in informal carer support. Informal carers should be offered a carers assessment (which can be undertaken jointly or separately to the person’s care assessment). All agencies play a role in identifying informal carers and signposting them to the support available.

Key Learning

Cases involving a lack of self-care often require lengthy, flexible, and creative involvement from practitioners. This can be contrary to eligibility criteria for services and other organisational pressures.

Practitioners should use managerial and supervision support to discuss cases which might benefit from a different approach being taken.

Understanding the mental capacity of the person is crucial to managing risks associated with someone who is neglecting their health and care needs.

Where there is a significant/critical risk of harm as a result of a lack of self-care, safeguarding adults’ procedures should be used to share information and to manage risks.

Where concerns persist and/or risks increase, there may be a need to seek additional advice and support. This might be from legal services, senior managers and/or safeguarding/MCA specialists

Informal carers can greatly reduce risks associated with a lack of self-care. However, they need to be visible to professionals and appropriately supported.

Questions for you to Consider

• Have you communicated and shared information with professionals in other agencies, in particular those working in health services?
• Are you clear about any informal carer arrangements? Have informal carers been offered an assessment/support in their caring role?
• Have you considered if a key worker(s) or advocate would be helpful?
• Have you assessed the person’s mental capacity in relation to health, care or treatment decisions? Has this been completed recently, and has it been formally recorded?
• Have there been full and frank conversations with the person about the risks of neglecting their health and care needs?

Links to further information

DSP Self-neglect and Hoarding Guidance and Resources

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

Self-Neglect at a Glance - SCIE [external link]

Definition of Hoarding

Hoarding disorder was previously considered to be a form of Obsessive-Compulsive Disorder (OCD). Hoarding is now considered to be a standalone mental disorder and is included in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) 2013. However, hoarding can also be a symptom of other mental disorders. 

Hoarding disorder is distinct from the act of collecting and is also different from people whose property is generally cluttered or messy.  It is NOT simply a lifestyle choice and can be caused by traumatic life experiences.

The main difference between a hoarder and a collector is that hoarders have strong emotional attachments to their objects which are higher than the real value.

Three Types of Hoarding

• Inanimate objects – this could include one type of object or a collection of a mixture of objects such as old clothes, newspapers, books, food, containers, or papers.
• Animal hoarding – this is the obsessive collecting of animals, often with an inability to provide minimal standards of care.  The homes of animal hoarders are often eventually destroyed by the accumulation of animal faeces and infestation by insects.
• Digital hoarding – there is little research on this matter, but it could include data collection equipment such as computers, electronic storage devices or papers or it could include a need to store copies of emails and other information in an electronic format.

Five Diagnostic Criteria for Identifying a case of hoarding Disorder

• Persistent difficulty discarding or parting with possessions, regardless of their monetary value
• This difficulty is due to a perceived need to save items and the distress associated with discarding items
• The difficulty discarding possessions results in the accumulation of possessions that congest and clutter active living areas
• The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning
• The hoarding is not attributable to another medical condition or mental disorder

Mental Capacity

Learning from Safeguarding Adult Reviews in cases of self-neglect often focuses upon the lack of the practical application of the Mental Capacity Act.  Understanding the mental capacity of the person is crucial to managing risks associated with hoarding. This will often require a Mental Capacity Assessment.  Practitioners should ensure that the risks around a particular decision are clearly and honestly explained to allow the person to make an informed choice. This might involve telling someone that they are putting their life at risk.  Learning from cases has also highlighted the need to consider whether a person has executive functioning – a person’s ability to implement a decision they have made.

Key Learning

How to Recognise Hoarding

• Evidence of fear and anxiety which may have started as a learnt behaviour or a significant event such as bereavement
• Long term behaviour pattern
• Excessive attachment to possessions
• Indecisiveness
• Unrelenting standards
• Socially isolated – should also consider if they are refusing home visits and insisting on office-based appointments
• Large number of pets
• Extreme clutter
• Self-care – they may appear unkempt and dishevelled.
• Poor insight

Multi-Agency Response

Self-neglect cases often require a multi-agency response, whether this is under safeguarding adults’ procedures or as part of multi-disciplinary working more generally. There needs to be a clear understanding of the person’s needs as a whole.   A multi-agency approach often works well, with a core group of professionals established to closely monitor risks and agree plans to manage risks.  When someone is neglecting their home environment there are many organisations that are likely to be crucial to understanding and managing risks, for example:  GPs, Mental Health Services, Housing, Fire & Rescue Service, Police, RSPCA / Animal Welfare etc.

Know when to seek Support/ Escalate

Where concerns persist and/or risks increase, there might be a need to seek additional advice and support. This might be from legal services, senior managers and/or safeguarding/MCA specialists.

Value Informal Carers

Informal carers can greatly reduce risks associated with hoarding. However, they need to be visible to professionals and appropriately supported. Consider Carer Assessments.

Questions for you to Consider

• As people may see clutter differently, Hoarding UK have published a Clutter Image Tool to support professional judgement.  This will also help identify any deterioration of self-neglect.
• To support the Clutter Image Tool assessment, guidelines have been produced to support good practice in managing the balance between protecting adults from self-neglect and their right to self-determination.
• Do you understand the causes of the person’s hoarding and their lived experience?
• Have you communicated and shared information with professionals in other agencies?  Have you considered your local multi-agency safeguarding adults’ policies and procedures?
• Are you clear about any informal carer arrangements? Have informal carers been offered support in their caring role? Have they had a Carer Assessment?
• Have you considered if a key worker(s) or advocate would be helpful?
• Have you assessed the person’s mental capacity in relation to hoarding and the subsequent risks? Has this been done recently, and has it been formally recorded?
• Have there been full and frank conversations with the person about the risks of hoarding? Consider a referral for a home fire safety check.
• Are there any small, practical steps that could reduce risk? E.g. ashtrays, checking there are fire alarms and that they work?

Links to further information

DSP Self-neglect and Hoarding Guidance and Resources

DSP Learning Briefings linked to Self-Neglect

DSP Learning Review linked to Self-Neglect - Philip & Loraine

Self-Neglect at a Glance - SCIE [external link]

Hoarding UK [external link]