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Self Neglect

Managing the balance between protecting adults at risk of self-neglect against their right to self-determination is a serious challenge for services. Working with people who are difficult to engage with can be exceptionally time consuming and stressful to all concerned.

However, failure to engage with people who are not looking after themselves, (whether they have mental capacity or not) may have serious implications for, and a profoundly detrimental effect on, an individual's health and well-being. It can also impact on the individual's family and the local community.

Often the cases that give rise to the most concern are those where an individual refuses help and services and is seen to be at grave risk as a result.

If an agency is satisfied that the individual has the mental capacity to make an informed choice on the issues raised, then that person has the right to make their own choices, even if these are considered to be unwise. But, in cases of significant vulnerability there should be on-going engagement with the individual applying the principles outlined in this policy.

Serious self-neglect is a complex issue which usually encompass a complex interplay between mental, physical, social and environmental factors. It frequently covers inter-related issues such as drug and alcohol misuse, homelessness, street working, mental health issues, criminality, anti-social behaviour, inability to access benefits and / or other health related issues.

The Care Act, which came into force on 1 April 2015, sets out the Local Authority's responsibility for protecting adults with care and support needs from abuse or neglect in primary legislation. For the first time, this makes direct reference to self-neglect. The Act provides particular focus on well-being in relation to an individual (Section 1), and requires that organisations should always promote the adult's well-being in their safeguarding arrangements. This includes establishing with the individual what 'safe' means to them and how this can be best achieved. Well-being in the Act is described as:

  1. Personal dignity (including treatment of the individual with respect)
  2. Physical and mental health and well-being
  3. Protection from abuse and neglect Control by the individual over day to day life (including over care and support, or support provided to the individual and the way in which it is provided)
  4. Participation in work, education, training or recreation
  5. Social and economic well-being
  6. Suitability of living accommodation
  7. The individual's contribution to society

The principles of promoting a person's wellbeing are also supported by Making Safeguarding Personal (2014), and subsequent toolkit Making Safeguarding Personal: A Toolkit for Response (2015), which seeks to ensure that where possible, the individual is involved in their own safeguarding and that it is 'person-led', 'out-come' focused but not process driven.

This document outlines a multi-agency procedure and guidance for dealing with issues and concerns of self-neglect in relation to adults (over the age of 18) with care and support needs and should be read alongside Salford's Safeguarding Adults Policy and Procedures.

This guidance is aimed at a wide range of professionals involved in working with people who may self neglect (including first responders whose role is to identify issues of self-neglect, respond appropriately in the moment and then refer on to other agencies as appropriate). Appendix 1 gives an overview of indicators of self-neglect and best practice guidance to engage individual).

The policy aims to prevent serious harm or even the death of individuals who appear to be self-neglecting by ensuring that:

  • Individuals are empowered as far as possible, to understand the implications of their actions
  • There is a shared, multi-agency understanding and recognition of the issues involved in working with individuals who self-neglect
  • There is effective multi-agency working and practice
  • Concerns receive appropriate prioritisation
  • Agencies and organisations uphold their duty of care
  • There is a proportionate response to the levels of risk to self and others

This guidance does not include issues of risk associated with deliberate self-harm. If self-harm appears to have occurred due to an act of neglect or inaction by another individual or service, consideration should be given to raising a safeguarding adults concern with Adult Social Care.

Self neglect

The Care Act statutory guidance 2014 defines self-neglect as;

"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"

The term itself can be a barrier to working with the issues, and some individuals do not identify with this term or description of their situation. As a result, it is important that practitioners seek to negotiate a common ground to understand the individuals own description of their lifestyle rather than making possible discriminatory value judgements or assumptions about how it can be defined.

Hoarding

Hoarding behaviour was previously seen as a symptom of Obsessive Compulsive Disorder (OCD) but it has now received a separate clinical definition of 'hoarding disorder' and is defined as:

'A psychiatric disorder characterised by persistent difficulty discarding or parting with possessions, regardless of their actual value resulting in significant clutter that obstructs the individual's living environment and produces considerable functional impairment.' (GMFRS Hoarding, Prevention and Protection)

There is further guidance and support from Help for Hoarders.

Characteristics of self-neglect

There are various reasons why people self-neglect. Some people have insight into their behaviour, while others do not; some may be experiencing an underlying condition, such as dementia.
The following characteristics and behaviours are useful examples of potential self-neglect and consequent impairments to lifestyles:

  • Living in very unclean, sometimes verminous, circumstances, such as living with a toilet completely blocked with faeces, not disposing of rubbish;
  • Neglecting household maintenance, and therefore creating hazards;
  • Obsessive hoarding creating potential mobility and fire hazards;
  • Animal collecting with potential of insanitary conditions and neglect of animals' needs;
  • Failing to provide care for him/herself in such a way that his/her health or physical well-being may decline precipitously;
  • Poor diet and nutrition, evidenced for instance by little or no fresh food or mouldy food in the fridge;
  • Failure to maintain social contact;
  • Failure to manage finances;
  • Declining or refusing prescribed medication and/or other community healthcare support - for example, in relation to the presence of mental disorder (including the relapse of major psychiatric features, or a deterioration due to dementia) or to podiatry issues;
  • Refusing to allow access to health and/or social care staff in relation to care needs, health needs or property maintenance, or, being unwilling to attend appointments with relevant staff.

Characteristics identified by people deemed to self-neglect-

Research has identified the following:

  • Fear of losing control
  • Pride in self sufficiency
  • Sense of connectedness to the places and things in their surroundings
  • Mistrust of professionals / people in authority

Common responses by people deemed to self-neglect:

  • I can take care of myself
  • I do my best to make ends meet
  • I prioritise and let other things go

Characteristics of hoarding

Hoarding behaviour is typically manifested in three ways:

  • Acquisition
    • Compulsive buying and/or the accumulation of free items such as newspapers, junk mail and items left at the side of the road. This can be motivated by the belief that having an item will bring comfort and make the person happy or that they are 'rescuing' items so that they are not wasted or lost. It can also provide a sense of security (especially where the person has been a victim of crime).
  • Saving
    • There are three common reasons for saving: 'sentimental' which can be motivated by grief and refers to the emotional attachment a person feels toward an object i.e. it may become linked to a happy memory or someone they love and miss; 'instrumental' which can often stem from a history of having experienced deprivation, or of having had possessions forcibly taken from them in the past and so items are saved 'just in case I need them' or to guard against 'being without' again in the future; 'intrinsic' or 'aesthetic' where items are saved because they are seen as too beautiful to be discarded.
  • Disorganisation
    • Items of value are mixed in with rubbish and items of no apparent value. People who hoard often have difficulty with information processing, categorisation, sequencing tasks and decision making. They may also believe that they have a poor memory which leads to items being stored where they are visible instead of put away in cupboards i.e. 'if I put them away, I won't be able to see them and if I can't see them I won't remember I have them and they will be lost to me'.

The complexities around the reasons why a person hoards and their emotional attachment to the items hoarded means that simply ordering or telling a person to clear their home will likely have no effect and/or may increase the person's anxiety, potentially exacerbating the problem.

The emotions stirred up when attempting to discard hoarded items can be too distressing and/or leave the person feeling vulnerable and insecure. In addition, difficulty with decision making and not being able to break a task down into smaller steps could mean that the process of clearing hoarded items is overwhelming for the person and so avoided.

It is also common for people who hoard not to recognise the severity of the problem and ignore, or not see, the clutter in their home. Conversely, the person who hoards may be acutely aware of the issue and feel embarrassed, leading them to feel defensive and/or deny that there is a problem. All of this can prevent a person from discarding hoarded items.

Clutter images

Greater Manchester Fire Service hoarding policy gives additional best practice on hoarding. It references clutter images to support an impartial assessment of scales of clutter and hoarding. See appendix 8 (PDF).

Principles for effective working with self neglect and hoarding issues

The following are the key principles that should be applied to all areas of safeguarding adults practice(Care Act 2014 statutory guidance).

Empowerment - People being supported and encouraged to make their own decisions and informed consent. "I am asked what I want as the outcomes from the safeguarding process and these directly inform what happens."

Prevention - It is better to take action before harm occurs. "I receive clear and simple information about what abuse is, how to recognise the signs and what I can do to seek help."

Proportionality - The least intrusive response appropriate to the risk presented. "I am sure that the professionals will work in my interest, as I see them and they will only get involved as much as needed."

Protection - Support and representation for those in greatest need. "I get help and support to report abuse and neglect. I get help so that I am able to take part in the safeguarding process to the extent to which I want."

Partnership - Local solutions through services working with their communities. Communities have a part to play in preventing, detecting and reporting neglect and abuse. "I know that staff treats any personal and sensitive information in confidence, only sharing what is helpful and necessary. I am confident that professionals will work together and with me to get the best result for me."

Accountability - Accountability and transparency in delivering safeguarding. "I understand the role of everyone involved in my life and so do they."

The following principles underpin this guidance in working with self-neglect and hoarding issues:

  • Promoting a person centred approach that supports the right of the individual to be treated with respect and dignity, and, as far as possible, to be in control of  their own life. The focus should be on person centred engagement and risk management, and consideration should be given to if the individual is more inclined to engage with some organisations than others - if so, this should be optimised in the engagement with the individual.
  • The response needs to be proportionate to the level of risk to the person and others, the self-neglect assessment tool (appendix 3) (PDF) & hoarding assessment tool (PDF) (appendix 8), can be used to determine the level of risk as low, moderate or high. The risk should be monitored where it is moderate or high, making proactive contact with the adult to ensure that their needs and rights are fully considered in the event of any changed circumstances
  • Each organisation needs to take responsibility for their role in supporting the adult to address issues caused through self-neglect
  • Partnership approach should be used in cases where appropriate to enable powers and abilities of different organisations to be implemented
  • Multi-agency meetings are a helpful approach for more complex cases that are higher risk - these should be considered in cases where a single agency approach has been exhausted and a substantial risk still remains. Balancing choice, control, independence and wellbeing calls for sensitive and carefully considered decision-making.
  • Accepting self-neglect as a "lifestyle" choice and closing a case without having assessed the risk and engaged with the adult in a meaningful way is unacceptable as this exposes the adult at risk to ongoing or increased harm or risk, and organizations to failing in their duty of care. Social workers should refer to guidance on closing cases (see multi-agency policy and procedures guidance)/ add link to this)

Part of the challenge is knowing when and how far to intervene when there are concerns about self-neglect and a person makes a capacitated decision not to acknowledge there is a problem or to engage in improving the situation, as this usually involves making individual judgments about what is an acceptable way of living, balanced against the degree of risk to an adult and/or others.

Assessing mental capacity and trying to understand what lies behind self-neglect is often complex. It is usually best achieved by working with other organisations and, if they exist, extended family and community networks. It is important to understand that poor environmental and personal hygiene may not necessarily always be as a result of self-neglect.

It could arise as a result of cognitive impairment, poor eyesight, functional and financial constraints. In addition, many people, particularly older people, who self-neglect may lack the ability and/or confidence to come forward to ask for help, and may also lack others who can advocate or speak for them.

Self neglect - empowering/engaging the adult at risk

Building a positive relationship with individuals who self-neglect is critical to achieving change for them, and in ensuring their safety and protection.

Positive outcomes can be achieved through operational approaches informed by an understanding of the unique experience of each individual balanced with strategic and management input.

In engaging with the adult:

  • Consider if they have the necessary information in a format they can understand
  • Check whether they understand options and consequences of their choices
  • Listen to their reasons for mistrust, disengagement, refusal and their choices
  • Ensure there is the time to have conversations over a period and building up of a relationship
  • Consider whom (whether family, advocate, other professional) can support you to engage with the adult
  • Always involve attorneys, receivers, or representatives if the adult has one
  • Establish if a plan for agreed actions / outcome for person who has fluctuating capacity is in place during a time when they had capacity for that decision
  • Support/encourage the adult to attend meetings where possible

Mental capacity - consideration needs to be given at an early stage, to determining if the individual has the mental capacity to understand and make informed decisions about their response to agencies concerns about their apparent self-neglecting behaviour (see section 8).

Risk Enablement - there is a need to be mindful that organisational and professional risk aversion can hinder choice, control and independent living. This poses real challenges for practitioners/professionals in balancing risk enablement with their professional duty of care to keep people safe. Risk enablement therefore should always be a core part of placing people at the centre of their own care and support. Providing real choice and control means enabling people to take the risks that they choose and incorporating safeguarding and risk enablement into relationship-based, person centred working.

Engagement/support with the adult's at risk family/informal carers

Carers have the same rights as people with care and support needs under the Care Act 2014. In situations where a carer is supporting someone who self neglects or has hoarding behaviours or indeed lives with the person, then there are statutory requirements.

Carers' assessments must seek to establish the carer's need for support (practical and emotional),  and the sustainability of the caring role itself.  The local authority must include a consideration of the carer's potential future needs for care and support Families and informal carers can often make a very valuable contribution especially in terms of history of behaviour and what is "normal" for this person. They may well also be able to assist in building trust between services and the individual.

Engaging family members/informal carers

The family member or carer of an adult at risk should be engaged wherever possible when the adult at risk has provided consent. This will include being part of planning, decision making and whether they are willing and able to provide support.

Consent not given

Where the adult does not give consent to engage with an informal carer, the carer is still entitled to a carer's assessment, and if they raise concerns in their own right, or if they have made the referral about the self-neglect concerns then these should still be discussed and their concerns heard.

Factors to consider in engaging with family/informal carers:

  • Ensure the person is aware and consenting to the proposed role of family/carer in his/her care/treatment plan
  • Offer/carry out carers assessment
  • If family are needed/expected to provide care or support
  • Involve the family/relative/carer in the development of any care & support plan. consider if it's appropriate to invite carers to planning/discharge meetings
  • Ensure that the carer's role and responsibilities are clearly recorded on formal care and support plans
  • Check that they are willing and able to provide care & support
  • Provide them with necessary training, information to do what is expected
  • Mentor/supervise, review to ensure they understand &  have the skills
  • Explore the dynamics between family members - these may underpin the self-neglect & influence their decision making
  • Find creative solutions working with family members & other community resources
  • Challenge informal carers (appropriately & safely) if there is reason to believe  that the person is being manipulated or intimidated by them - concerns should be referred on to statutory agencies as appropriate.

Self neglect - responses to service refusal

The most frequent concern raised by professionals when working with adults who may self-neglect or hoard is the challenge when adults refuse to engage or accept services.

Self-neglect or hoarding needs to be understood in the context of each individual's life experience; there is no one overarching explanatory model for why people self-neglect or hoard. It is a complex interplay of association with physical, mental, social, personal and environmental factors. A starting point is trying to understand why the person is disengaging and the context for why they may mistrust services.

Actions which can help to get engagement in self-neglect are suggested by Braye et al. (2015) as

Theme  Examples
Moving from rapport to relationship Taking the time to get to know the person, refusing to be shocked
Finding the right tone Avoiding kneejerk responses to self-neglect, talking through the interests, history and stories
Going at the individuals pace Moving slowly and not forcing things; continued involvement over time
Agreeing a plan Making clear what is going to happen; a weekly visit might be the initial plan
Finding something that motivates the individual Linking to interests (e.g. hoarding for environmental reasons, link into recycling initiatives)
Starting with practicalities Providing small practical help at the outset may help build trust
Bartering Linking practical help to another element of agreement - bargaining
Focusing on what can be agreed Finding something to be the basis of the initial agreement, that can be built on later
Keeping company Being available and spending time to build up trust
Straight talking Being honest about potential consequences
Finding the right person Working with someone who is well placed to get engagement
External Leavers Recognizing and working with the possibility of enforcement action

It is important to consider in multi-agency partnership settings which agency is best placed to work with an adult who is disengaging to build links and trust.

If a person has capacity, is refusing to engage and there remains ongoing significant harm to a person's health, safety or wellbeing then consideration should be given to the benefits of convening a multi-disciplinary meeting to ensure all available powers and duties are considered. Again, this needs to be balanced and proportionate and take into account a person's right to self-determination. If a person lacks capacity the need for Court of Protection involvement should be considered.

If any agency is considering legal remedies, then a multi-agency meeting should be convened in most cases to ensure that all other potential options have been fully considered.

Research suggests that people who self-neglect or hoard appreciate the following in professionals working with them

  • Humanity/empathy
  • Calm and understanding approaches
  • Reliable/patient/honest
  • Normalising self-neglect (neither dismissing it or treating it as exceptional)
  • Recognising and working with strengths of individuals
  • Recognising resilience and determination in individuals
  • Understanding people's individual stories and reasoning
  • Not walking away...respect for autonomy should not prevent you from Challenging a person's life style if it is causing them harm
  • A conversation and being challenged even if did not agree
  • Work at individual's own pace - not being overly directive

Self neglect - legal framework

Public authorities, as defined by the Human Rights Act 1998, must act in accordance with the requirements of public law. In relation to adults perceived to be at risk because of self-neglect, public law does not impose specific obligations on public bodies to take particular action.

Instead, the authorities are expected to act fairly, proportionately, rationally and in line with the principles of the Care Act 2014, the Mental Capacity Act 2005, and, where appropriate, consideration should be given to the application of the Mental Health Act 1983. Where appropriate, concerns may be referred to the Court of Protection. In rare cases, where the individual has capacity, but is unable to exercise choice, for example - appears to be acting under duress, consideration should be given to options available under the Inherent Jurisdiction of the High Court.

The Care Act 2014 places specific duties on the Local Authority in relation to self-neglect as follows:

Assessment (Care Act Section 9 and Section 11)

The Local Authority must undertake a needs assessment, even when the adult refuses, where:

  • it appears that the adult may have needs for care and support
  • and is experiencing, or is at risk of, self-neglect.

This duty applies whether the adult has the capacity or lacks the capacity to refuse an assessment. 

Enquiry (Care Act Section 42)

The Local Authority must make, or cause to be made, whatever enquiries it thinks necessary to enable it to decide what action should be taken in an adult's case, when the Local Authority has reasonable cause to suspect that an adult in its area:

  • has needs for care and support,
  • is experiencing, or is at risk of, self-neglect
  • and, as a result of those needs, is unable to protect himself or herself against self-neglect, or the risk of it.

Advocacy

If the adult has 'substantial difficulty' in understanding and engaging with any social care process, including a Care Act Section 42 Enquiry, the local authority must ensure that there is an appropriate person to help them, and if there isn't, arrange an independent advocate.

It is important that all staff are familiar with, and are mindful of their 'Duty of Care' when dealing with cases of self-neglect or hoarding, even if the adult has mental capacity to make decisions specifically related to their care.

'Duty of Care' (established through common law) can be summarised as 'the obligation to exercise a level of care towards an individual, as is reasonable in all circumstances, by taking into account the potential harm that may reasonably be caused to that individual or his property'.

Any failure in the duty of care that results in harm could lead to a claim of negligence and consequent damages.

Human Rights Act 1998 article 8 gives everyone the right to 'respect for his private and family life, his home and his correspondence' and needs to be considered at all times.

Legal Interventions

There will be times when the impact of the self-neglect on the person's health and well-being or their home conditions or neighbours' environmental conditions are of such serious concern that practitioners may need to consider what legislative action can be taken to improve the situation when persuasion and efforts of engagement have failed. Such considerations should be taken as a result of a multi-disciplinary, multi-agency intervention plan with appropriate legal advice.

Possible legislative remedies that might need to be considered are outlined in the legal options appendix 2.  Please note all legal routes would need to be considered in consultation with legal advice and the options outlined here are for information only.

It is important to note that s46 of the Care Act 2014 abolishes Local Authorities' power in England to remove a person in need of care under s47 of the National Assistance Act 1948.

Mental capacity is a key determinant of the ways in which professionals understand self-neglect and how they respond in practice. The autonomy of an adult with mental capacity is respected, and efforts should be directed to building and maintaining supportive relationships through which services can in time be negotiated if required.

When a person has been assessed not to have capacity to understand and make specific choices and decisions, interventions and services can be provided in the person's best interest.

Mental capacity however involves not only the ability to understand the consequences of a decision, known as decisional capacity, but also the ability to execute the decision, known as executive capacity. The mental capacity assessment should entail both the ability to make a decision in full awareness of its consequences and the capacity to carry it out.

It is also important to understand the function-specific nature of capacity, so that the apparent capacity to make simple decisions is not assumed automatically in relation to more complex ones.

Careful attention should be paid to the assessment of mental capacity, especially with regards the person's ability to weigh up and make use of information. It is important to be aware that people can be articulate and superficially convincing regarding their decision making but when probed about their behaviour are unable to identify risks and indicate how they are able to address the concerns of others.   The nature of any intervention will to a certain extent centre on the question of whether the adult concerned has the mental capacity to make decisions. Consideration should also be made for people who may fall under the substantial difficulty criteria.

Respect for the persons wishes and beliefs needs to be central. Professionals need to find creative, sensitive ways to work with people who self neglect or hoard, understanding what the behaviour means to them and how they themselves wish to address the problem.

Where an adult has fluctuating capacity, it may be possible to establish a plan when they are capacitated which determines what they want to happen when they lack capacity & it is important to make every effort to 'enhance' the person's capacity through the timing of discussions etc.

For adults who have been assessed as lacking the mental capacity to make specific decisions about their health and welfare, the Mental Capacity Act 2005 allows for agency intervention in the person's best interests. In urgent cases, where there is a view that an adult lacks mental capacity (and this has not yet been satisfactorily assessed and concluded), and the home situation requires urgent intervention, the Court of Protection can make an interim order and allow intervention to take place.

A person who lacks capacity has recourse in law to the Court of Protection (See legal options, appendix 2). The court will however expect to see evidence of professional decision making and recording having already taken place. Practitioners should:

  • Check whether the adult has made an advanced directive when involved with significant decisions about health
  • Involve the adult in meetings and decision as much as possible
  • Always involve attorneys, representatives such as IMCAs or other advocates
  • Ensure that the engagement and the individual's decisions are clearly recorded within the relevant documentation e.g. support plans, risk assessments, meeting proforma.

Guidance on assessing mental capacity in connection to self neglect or hoarding

When assessing capacity, it is important to remember this is an assessment of capacity for whether the adult has capacity to access help for their self neglect or hoarding - so, does the adult understand they have a problem? Is the adult able to weigh up the alternative options, e.g. being able to move around their accommodation unhindered?  Can the adult retain the information given to them e.g. if the accommodation is cleared, you would be able to move around your accommodation? Can the adult communicate their decision? It is essential that any capacity assessment is clearly documented on case records

If there are any children or young people in the home consider whether the clutter/cleanliness in the home is such that the child/children may be subject to risk, harm or neglect. See the Safeguarding Children Board for guidance on neglect of a child

If in doubt, a referral should be made to children's safeguarding.

If the child is caring for the adult in any way they may be a young carer and consideration should be given to a referral to children's services for support for the young carer.

Domestic violence can be so embedded into the pattern of family life that the victims, perpetrators and other family members may not define or recognise their experience as domestic abuse.

The Home Office defines Domestic Violence and Abuse as:

Any incident or pattern of incidents of controlling, coercive or threatening behaviour, violence or abuse between those aged 16 or over who are or have been intimate partners or family members regardless of gender or sexuality. This can encompass but is not limited to the following types of abuse:

  • Psychological;
  • Physical;
  • Sexual;
  • Financial;
  • Emotional.

Controlling behaviour is: a range of acts designed to make a person subordinate and/or dependent by isolating them from sources of support, exploiting their resources and capacities for personal gain, depriving them of the means needed for independence, resistance and escape and regulating their everyday behaviour.

Coercive behaviour is: an act or a pattern of acts of assault, threats, humiliation and intimidation or other abuse that is used to harm, punish, or frighten their victim.

This definition includes so called 'honour' based violence, Female Genital Mutilation (FGM) and forced marriage, and is clear that victims are not confined to one gender or ethnic group.

Research in Practice for Adults (RIPFA) has further information, tools and training on working with coercive control.

The Serious Crime Act 2015 creates a new offence of controlling or coercive behaviour in intimate or familial relationships. Controlling or coercive behaviour does not relate to a single incident, it is a purposeful pattern of behaviour which takes place over time in order for one individual to exert power, control or coercion over another. Such behaviours might include:

  • Isolating a person from their friends and family;
  • Depriving them of access to support services, such as specialist support or medical services Depriving them of their basic needs;
  • Taking control over aspects of their everyday life, such as where they can go, who they can see, what to wear and when they can sleep;
  • Repeatedly putting them down such as telling them they are worthless;
  • Enforcing rules and activity which humiliate, degrade or dehumanise the victim;

Cases where an informal carer is very involved in the person's care, can involve a complex mix of elements including controlling and coercive behaviour, dependency and self neglect.  In these cases it is important to:

  • Have discussions with the adult who is self-neglecting separately in order to discuss any aspects of coercion
  • Establish with the informal carer, how they perceive their caring role, what care and support they provide, what care and support they believe the person requires  and if they need any support in their role as an informal carer - a carer's assessment should be offered
  • Consider if the case should be referred to MARAC (Multi-Agency Risk Assessment Conference).  This is a multi-agency forum for sharing information and jointly planning responses where the person is considered to be at high risk of death or serious injury.

Making sense of the self-neglect

Partner agencies will conduct a range of assessments according to their role and involvement with a person who may be self-neglecting or hoarding. Self-neglect is complex and it's important to understand as far as possible each person's particular circumstances and their perceptions of their situation as part of assessment and intervention.

Sensitive and comprehensive assessment is important in identifying capabilities and risks. It is important to look further and tease out through a professional relationship possible significance of personal values, past traumas and social networks. Some research has shown that events such as loss of parents as a child, abuse as a child, traumatic wartime experiences, and struggles with alcoholism have preceded the person self-neglecting. The self-neglect could also be the result of domestic abuse (current or historic).

Assessment in Adult Health and Social Care Contact Team

For any self-neglect referrals made to ASC, an initial risk assessment and decision at the Adult Health and Social Care Contact Team is the first aspect of assessment and an initial decision re the appropriate response to a referral is made.

General principles for assessing risk at the Contact Team

As Health and Social Care Contact Team staff are not able to do face to face assessment, staff will apply the general principles of this policy to a 'long arm' assessment process by:

  • Ensuring that where possible they will make contact with the individual and/or their representative/friend/family member to seek their views of the situation and level of risk
  • Ensuring that as far as possible other services who are aware of the individual are contacted for their perspective on the situation and risk
  • Applying the self neglect risk assessment tool with a specific focus to the following issues;
    • Poor hygiene that is or could cause significant health issues
    • Significant health issues that area already causing or could cause high risk
    • Deterioration in health and weight loss
    • Lack of ability to care for basic requirements (hygiene, health and nutrition) and a refusal to accept any support
    • Isolation from family and friends
    • Possible coercion by informal carers leading to any of the above high risk concerns

Police welfare notices

Many of the self neglect referrals may present as police welfare notices which will have been risk assessed as either medium or high risk.

Time scales for the review of welfare notices by the Adult Health and Social Care Contact Team

  • The contact team will conduct an initial screening of all welfare notices on the day they are received (the service operates Monday to Friday).
  • All welfare notices will be completed within 10 working days

General principles for face to face assessment

It is important to consider how to engage the person at the beginning of the assessment. Careful consideration should be given to the method of making contact to ensure it is not perceived as impersonal or authoritative. The usual standard appointment letter is unlikely to be an effective way of beginning a lasting trusting professional relationship.

Home visits are important and practitioners should question if third party information or a telephone conversation is sufficient to make an informed assessment/decision.

It is important that the practitioner uses their professional skills to be invited into the person's house and observe for themselves the conditions of the person and their home environment. Practitioners should discuss with the person any causes for concern over the person's health and wellbeing and obtain the person's views and understanding of their situation and the concerns of others.

The assessment should include the person's understanding of the overall cumulative impact of a series of small decisions and actions as well as the overall impact.

Repeat assessments might be required as well as ensuring that professional curiosity and appropriate challenge is embedded within an assessment.

It is important that when undertaking the assessment the practitioner does not accept the first, and potentially superficial, response rather than interrogating more deeply into how a person understood and could act on their situation.

Information sharing

Information sharing across all relevant agencies (subject to appropriate info sharing protocols) is crucial so that all agencies involved to better understand the extent and impact of the self-neglect and to work together to support the individual and assist them in reducing the impact on their wellbeing and on others.

Multi-agency meetings to share information should be considered in complex cases, where there are significant risks in order to better understand and manage risk (see section 15).

Wherever possible the person themselves should be included in the meeting along with significant others and an independent advocate where appropriate.

Risk assessment

In potentially complex situations or where there is thought to be significant risk to the person's health, wellbeing or environment or to others, practitioners should use a risk assessment tool to evaluate the risks and where required, it is important to take into account individuals' preferences, histories, circumstances and life-styles to achieve a proportionate and reasonable tolerance of acceptable risks.

Refusal of assessment/engagement in the assessment process

If an assessment is refused, then there should be a clear record of any concerns by agencies involved or informal carers/other parties, the perceived risk from the information know at this point, and any system for monitoring the situation.

Any involved parties that have concerns should be advised that they can refer again if the situation deteriorates/changes and they have additional concerns.

Recording

  • It is important to record assessment, decision-making and intervention in detail to demonstrate that a proper process has been followed and that practitioners and managers have acted reasonably and proportionately.
  • There should be an audit trail of what options were considered and why certain actions were or were not taken.
  • At every step and stage in the process record the situation, what has been considered, who has been consulted with and what decisions have been reached.
  • This may appear a time consuming process, but it is simply a case of putting your activity notes into a framework of considerations and why you have chosen a particular course of action.
  • Mental capacity considerations should be routinely recorded, including explicitly where there is no reason to doubt the adult's ability to make their own decisions and why this is.
  • Formal mental capacity assessments need to be recorded fully in line with the Mental Capacity Act Code of Practice.

The starting point for all interventions should be to encourage the person to do things for themselves. Where this fails in the first instance, this approach should be revisited regularly throughout the period of the intervention. All efforts and response of the person to this approach should be recorded fully.

Efforts should be made to build and maintain supportive relationships through which services can in time be negotiated. This involves a person-centred approach that listens to the person's views of their circumstances and seeks informed consent where possible before any intervention. It is important to note that a gradual approach to gaining improvements in a person's health, wellbeing and home conditions is more likely to be successful than an attempt to achieve considerable change all of a sudden, which is how the adult may perceive it (see Appendix 4 case examples).

A multi-agency approach is often most successful for self-neglect cases. Co-ordinated actions by housing officers, mental health services, GPs and DNs, social work teams, the police and other public services and family members have led to improved outcomes for individuals. Salford Agencies: outline of role & services can be found in the appendices.

Research supports the value of interventions to support routine daily living tasks. However cleaning interventions alone, where home conditions are of concern, do not emerge as effective in the longer term. They should therefore take place as part of an integrated, multi-agency plan.

As self-neglect is often linked to disability and poor physical functioning, often a key area for intervention is assistance with activities of daily living, from preparing and eating food to using toilet facilities.

Where agencies are unable to engage the person and reach an agreement to implement services to reduce or remove risks arising from the self-neglect, the reasons for this should be fully recorded and maintained on the person's case record, with a full record of the efforts and actions taken by the agencies to assist the person.

The person, carer or advocate should be fully informed of the services offered and the reasons why the services were not implemented. There is a need to make clear that the person can request assessment for services at any time in the future and the ways of making contact should be outlined to them.

Depending on the risks, arrangements may need to be made for ongoing monitoring and, where appropriate, making proactive contact to ensure that the person's needs, risks and rights are fully considered and to monitor any changes in circumstances.

In cases of collecting pets/animals, the practitioner will need to consider the impact of this behaviour carefully. Where there is a serious impact on either the adult's health and wellbeing, the animals' welfare, or the health and safety of others, the practitioner should collaborate with the RSPCA and public health officials. Although the reason for animal collecting may be attributable to many reasons, including compensation for a lack of human companionship and the company the animals may provide considerations have to be given to the welfare of the animals and potential public health hazards.

Where the conditions of the home are such that they appear to pose a serious risk to the adult's health from filthy or verminous premises, or their living conditions are becoming a nuisance to neighbours/affecting their enjoyment of their property, advice from Environmental Health should be sought and joint working should take place.

If as a result of hoarding the practitioner thinks there may be a risk of fire they should seek advice from GMFRS.

There are three broad approaches to monitoring/addressing self-neglect cases depending on the individuals involved, the issues and the level of risk. The self neglect assessment tool can be used to support decision making on the most appropriate approach to take.

  • Single agency response
  • Formalised multi-agency response
  • Section 42 safeguarding Adults referral/enquiry

Possible approaches that have been shown to work well are summarised below:

Theme

Examples

Being there Maintaining contact; monitoring risk/capacity, spotting motivation
Practical input Household equipment, repairs, benefits, 'life management'
Risk limitation Safe drinking, fire safety, repairs
Health concerns Doctors' appointments, hospital admissions
Care and support Small beginnings to build trust
Cleaning / clearing Proportionate to risk, with agreement, 'being with', attention to what follows
Networks Family/ community, social connections, peer support
Theraputic input Replacing what is relinquished; psychotherapy/mental health services
Change of environment Short term respite, a new start
Enforced action Setting boundaries on risk to self & others

(Braye et all. 2005)

The Care Act 2014 recognises self-neglect as a potential safeguarding matter and there are occasions where adults who have care and support needs, and have mental capacity will self-neglect and/or put themselves at risk of harm or even death. 

A High Risk Advisory Panel has been introduced to support professionals who are working with adults who have complex needs and are at high risk of harm.  

The High Risk Advisory Panel aims to offer support for professionals by providing a multi-agency risk enablement approach to offer advice and support in cases where single or multi-agency responses have been unable to reduce the level of risk, whilst empowering the adult and recognising their human rights. 

View more information at the High Risk Advisory Panel page

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