This learning resource, produced by Research in Practice, draws on evidence from research and safeguarding adult reviews (SARs) to identify how making safeguarding personal can make a difference to the health, wellbeing and safety of people who are self-neglecting.
Self-neglect poses particularly complex challenges to practitioners engaged in adult safeguarding. Crucial to effective intervention is the ability to engage and build rapport with people who may be reluctant, fearful or ashamed. Exploring the lived experience of self-neglect, understanding the ‘meaning of the mess’ and building relationships of trust will be key to achieving positive outcomes. This is very much in tune with the ethos and principles of making safeguarding personal.
This learning resource draws on evidence from research and safeguarding adult reviews (SARs) to identify how making safeguarding personal can make a difference to the health, wellbeing and safety of people who are self-neglecting.
The material is drawn from the wider evidence base on self-neglect work, selected components of which are listed in the further resources section of this workbook.
The resource is authored by Suzy Braye (Emerita Professor, University of Sussex) and Michael Preston-Shoot (Emeritus Professor, University of Bedfordshire), co-authors of a series of research reports on self-neglect and of the first national analysis of safeguarding adult reviews (2020).
The resource content
The materials in this resource may be freely used by anyone running in-service learning and development events relating to making safeguarding personal. They are suitable for either in-person or virtual delivery. The materials are as follows:
1. A video of outlining key components of making safeguarding personal (MSP) as applied in self-neglect work:
- An introduction to the challenges of self-neglect work
- Exploration of myths associated with MSP when working with self-neglect
- Key messages on translating making safeguarding principles into practice with people who self-neglect
A concluding summary
2. This workbook, which contains:
- Session plans for workshops of differing length
- A short quiz and case studies that can be incorporated into workshops
- Definitions of self-neglect and making safeguarding personal
- Material to support consideration of mental capacity
- Guidance on additional resources for further exploration
Below are three suggested session plans for workshops lasting between one and two hours. Clearly the time available will determine the depth in which the material can be explored, as well as the means of doing so.
One-hour session: Objective - to raise awareness of what MSP means when working with self-neglect
- Introductions: ask participants to introduce themselves briefly by name and job role (five minutes)
- Introduction to self-neglect and MSP: Use the material on definitions (provided below) to set out understandings of what constitutes self-neglect and what MSP means (five minutes)
- Quiz: Use a short True/False quiz (provided below) that spotlights some key issues relating to MSP in self-neglect work (10 minutes)
- Video: Play the video, asking participants to note one key message they take from it (30 minutes)
- Concluding discussion: ask participants to share their take-away message and one way in which their practice will change as a result (10 minutes)
One and a half hour session
- Objective: to raise awareness of what MSP means when working with self-neglect and to address some of the challenges experienced in practice. (15 minutes)
- Introductions: ask participants to introduce themselves as follows: name and job role; something they do well when working with self-neglect; something that’s a challenge when working with self-neglect (five minutes)
- Introduction to self-neglect and MSP: Use the material on definitions (provided below) to set out understandings of what constitutes self-neglect and what MSP means (10 minutes)
- Quiz: Use a short True/False quiz (provided below) that spotlights some key issues relating to MSP in self-neglect work and engage in discussion arising from participants’ answers (30 minutes)
- Video: Play the video, asking participants to note any ways in which it assists them to understand self-neglect and any take-way messages they will apply in their work (30 minutes)
- Discussion: Take feedback from each participant on how the video helps them to understand self-neglect; their take-away message; one way in which their practice will change as a result
- As part of the discussion, use the material provided below to highlight the importance of assessing capacity in high-risk situations (30 minutes).
- Objectives: to raise awareness of what MSP means when working with self-neglect; to address some of the challenges experienced in practice; and to apply key learning to a case study situation involving self-neglect (15 minutes)
- Introductions: ask participants to introduce themselves as follows: name and job role; something they believe they do well when working with self-neglect; something that’s a challenge when working with self-neglect (five minutes)
- Introduction to self-neglect and MSP: Use the material on definitions (provided below) to set out understandings of what constitutes self-neglect and what MSP means (10minutes)
- Quiz: Use a short True/False quiz (provided below) that spotlights some key issues relating to MSP in self-neglect work and engage in discussion arising from participants’ answers (30 minutes)
- Video: Play the video, asking participants to note any ways in which it assists them to understand self-neglect and any take-way messages they will apply in their work (15 minutes)
- Discussion: Take feedback from participants on how the video helps them to understand self-neglect (15 minutes)
- Small group work: Use one of the case studies provided below to engage participants (in groups of four to five) in discussion. The aim here is to apply the learning from the video to a case scenario in which self-neglect is a feature (15 minutes)
- Feedback: Take feedback from the small groups on their discussions of the case study (15 minutes)
- Concluding discussion: Take feedback from participants on their take-away message from the workshop; one way in which their practice will change as a result; as part of the discussion, use the material provided below to highlight the importance of assessing capacity in high-risk situations.
A short true/false quiz on MSP in self-neglect work
If the workshop is being delivered in person, the quiz can be done in open discussion, with either verbal responses or a show of hands. Or, if you prefer participants to respond privately, you can ask them to make a note of their answers before you run through the explanations. If the workshop is being delivered virtually, then setting up poll questions is a good way for participants to be able to ‘vote’ for their answer.
- 1. Self-neglect is usually a lifestyle choice. True or False?
False: Research shows that self-neglect results from a complex interaction between physical, psychological, emotional and social factors in the person’s life. Self-neglect is more often a response to trauma and adverse experiences - a coping mechanism to manage fear and insecurity, which then itself produces shame, isolation and further distress.
- 2. Self-neglect doesn’t always have to be the subject of a safeguarding enquiry. True or False?
True: The Statutory Guidance to the Care Act 2014 states that self-neglect might not always lead to a section 42 enquiry. A decision has to be made on a case-by-case basis on whether the person is able to protect themselves by controlling their own behaviour. This is a reference to the belief that self-neglect is sometimes a lifestyle choice, which as we’ve seen above is rarely the case. Situations of high-risk arising from self-neglect need to be addressed, whether through safeguarding or through other approaches.
- 3. If someone who is self-neglecting has mental capacity and refuses to engage in intervention, there is nothing that can be done to impose a solution. True or False?
False: Mental capacity assessment is pivotal to determining interventions. If the person lacks capacity in relation to their personal care or living conditions, healthcare or care and support, the Mental Capacity Act 2005 sets out the requirement for those decisions to be made by others, acting in the person’s best interests. Wishes, feelings, beliefs and values must still be taken into account. If the person has been assessed as having capacity and negotiated solutions have not been possible, interventions can be imposed under legislation relating to housing, public health or anti-social behaviour on the grounds that the self-neglect is posing risk, detriment, nuisance or annoyance to others. In some circumstances, application can be made to the High Court to take protective measures using its inherent jurisdiction.
- 4. Making safeguarding personal means you can only do what the person will allow you to do. We have to respect autonomy. True or False?
False: Respect for autonomy has to be balanced with a duty of care. Making safeguarding personal involves working with the person to help them develop the ability to see and pursue different options, to live in ways that are more self-careful and to manage the risks they face. Respecting autonomy does not mean abandonment.
- 5. Making safeguarding personal takes too long – we don’t have time, we need to find quick solutions. True or false?
False: Quick solutions that ‘solve’ the immediate risk to health or safety that self-neglect presents can be a false time-economy. Without addressing the underlying influences on the person’s behaviour or establishing a relationship of trust, such ‘solutions’ are likely to be followed by reoccurrence of the problem, incurring further cost. They can also cause acute and lasting psychological distress, adding a further layer of trauma to the person’s life. Equally, walking away from self-neglect because of lack of time to show professional curiosity and build relationship may result in far greater cost if risks remain unaddressed – even as far as cost to life.
Self-neglect in the statutory guidance to the Care Act 2014
The Statutory Guidance (Department of Health & Social Care, latest version 2022) makes a number of mentions of self-neglect:
Self-neglect is listed (14.17) as one of the circumstances that constitute abuse and neglect, removing the requirement for any third party to be involved when considering the need for safeguarding action. It is defined as covering “a wide range of behaviour neglecting to care for one’s personal hygiene, health or surroundings and includes behaviour such as hoarding”.
“Self-neglect: Where someone demonstrates lack of care for themselves and/or their environment and refuses assistance or services. It can be long-standing or recent.” (Annex J: Glossary)
“The concept of wellbeing is very important when responding to someone who self-neglects, where it will be crucial to work alongside the person, understanding how their past experiences influence current behavior.” (1.12)
(The) “local authority … should consider how to ensure that the person is and remains protected from abuse or neglect. This is not confined only to safeguarding issues but should be a general principle applied in every case including with those who self-neglect.” (1.14).
“Where the local authority has to take actions which restrict rights or freedoms, they should ensure that the course followed is the least restrictive necessary. Concerns about self-neglect do not override this principle.” (1.14)
“Within the context of the duties set out at paragraph 14.2 (s.42 criteria), safeguarding partnerships can be a positive means of addressing issues of self-neglect.” (14.141)
However, the guidance also notes that self-neglect may not always prompt a safeguarding enquiry under section 42 but indicates that an assessment of the need for safeguarding enquiry should be made on a case-by-case basis. A safeguarding response will depend on whether the adult is able to protect themselves by controlling their own behaviour.
American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. Washington, DC: APA.
Persistent difficulty discarding or parting with possessions, regardless of their actual value
Due to a perceived need to save the items and to distress associated with discarding them
Resulting in the accumulation of possessions that congest and clutter active living areas and substantially compromises their intended use
Causing clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining an environment safe for oneself or others)
Not attributable to another medical condition or better explained by the symptoms of another mental disorder
WHO (2018) International Classification of Diseases, 11th Edition. Geneva: World Health Organisation, implemented January 2022.
“Hoarding disorder is characterised by accumulation of possessions due to excessive acquisition of or difficulty discarding possessions, regardless of their actual value. Excessive acquisition is characterized by repetitive urges or behaviours related to amassing or buying items. Difficulty discarding possessions is characterized by a perceived need to save items and distress associated with discarding them. Accumulation of possessions results in living spaces becoming cluttered to the point that their use or safety is compromised. The symptoms result in significant distress or significant impairment in personal, family, social, educational, occupational or other important areas of functioning.”
Hoarding disorder with fair to good insight:
“All definitional requirements of hoarding disorder are met. The individual recognizes that hoarding-related beliefs and behaviours (pertaining to excessive acquisition, difficulty discarding, or clutter) are problematic. This qualifier level may still be applied if, at circumscribed times (e.g., when being forced to discard items), the individual demonstrates no insight.”
Hoarding disorder with poor to absent insight:
“All definitional requirements of hoarding disorder are met. Most or all of the time, the individual is convinced that that hoarding-related beliefs and behaviours (pertaining to excessive acquisition, difficulty discarding, or clutter) are not problematic, despite evidence to the contrary. The lack of insight exhibited by the individual does not vary markedly as a function of anxiety level.”
Making Safeguarding Personal
The Statutory Guidance to the Care Act embeds the principle of making safeguarding personal in the legal framework for safeguarding.
“This statutory guidance endorses the: ‘Making Safeguarding Personal’ approach. This represents a fundamental shift in social work practice in relation to safeguarding, with a focus on the person not the process.” (1.31)
“Making safeguarding personal means it should be person-led and outcome-focused. It engages the person in a conversation about how best to respond to their safeguarding situation in a way that enhances involvement, choice and control as well as improving quality of life, wellbeing and safety.” (14.15)
Making safeguarding personal represents a fundamental shift in social work practice and underpins all healthcare delivery in relation to safeguarding, with a focus on the person not the process.” (14.207)
The Local Government Association publication Myths and realities about Making Safeguarding Personal provides guidance on MSP, identifying myths and pitfalls that can interfere with its implementation.
The importance of mental capacity assessment in self-neglect
In safeguarding adult reviews, an absence of attention to mental capacity is one of the most commonly noted deficits in practice. The failures can include both an absence of assessment even where it is warranted and assessment that is undertaken but is insufficiently robust. The following points may assist discussion of the approach to be taken.
- Mental capacity assessment is decision specific: be clear about the decision for which you’re assessing capacity. Self-neglect typically arises from difficulties making a series of different decisions, or indeed an absence of decisions, over a long period of time.
- Mental capacity assessment is time-specific: be clear about the timing of the decision for which you're assessing capacity. You may need to adjust or repeat assessments to take account of the time period over which self-neglect develops, the impact of declining health, or the individual’s decision-making process.
In working through the requirements of the functional test (s.3, MCA 2005):
- Be clear about what is relevant information. This will depend on what decision you’re assessing capacity for; why the decision is important: consequences of making it (or not making it); understanding of risks: the level of understanding required may vary depending on the level or risk.
- It will be important to discuss a range of relevant information, which must include the reason the decision needs to be made, the risks relating to the situation in which it arises, and the pros, cons and consequence of deciding one way or another;
- Be clear what you’re looking for in relation to ‘retention’ of relevant information; test that the person can recall the relevant information at different points in the interview;
- Be clear what you’re looking for in ‘using or weighing’ information: ensure the person can tell you why they make the decision they make; explore how, in their decision-making process, they have weighed the importance of different pieces of relevant information and taken account of them.
Consider executive brain function:
- This can affect the ability to retain, use or weigh relevant information
- It affects working memory and the ability to plan, organise and implement actions, to recognise that it is time to act and to perform the necessary actions in the moment;
- It can also affect motivation, the ability to think flexibly and self-control.
So it is important to consider the use of ‘articulate and demonstrate’ models of assessment – consider the need to observe the individual at the time and in the context in which their decisions are being made.
Guidance provided by the National Institute for Health and Care Excellence emphasises this point (para 1.4.19):
“Practitioners should be aware that it may be more difficult to assess capacity in people with executive dysfunction – for example people with traumatic brain injury. Structured assessments of capacity for individuals in this group (for example, by way of interview) may therefore need to be supplemented by real world observation of the person's functioning and decision-making ability in order to provide the assessor with a complete picture of an individual's decision-making ability.” NICE (2018)
Decision-making and mental capacity
Assess over time / at different times:
- Establishing a relationship will facilitate better engagement and better information from the person;
- Make sure you allow for fluctuating capacity (eg where alcohol is involved, or where the time of day affects the person’s ability to reason);
- Patterns over time can be important to establish in self-neglect. The MCA Code of Practice (2007) states: “There may be cause for concern if somebody repeatedly makes unwise decisions that put them at significant risk of harm or exploitation or makes a particular unwise decision that is obviously irrational or out of character. These things do not necessarily mean that someone lacks capacity, But there might be need for further investigation, taking into account the person’s past decisions and choices. For example, have they developed a medical condition or disorder that is affecting their capacity to make particular decisions? Are they easily influenced by undue pressure? Do they need more information to help them understand the consequences of the decision they are making?” (para 2.11).
Consider what or who could assist the individual to make a decision:
- Family/network involvement;
- Information / Advocacy;
- More information / better clarification of options;
- Time to think - repeat assessment.
Consider the need for multidisciplinary involvement:
- Can you judge whether the individual has an impairment or disturbance in the functioning of the mind or brain? Do you need to involve anyone else in helping you make that judgement?
- Medical involvement to consider frontal lobe dysfunction?
- Mental health services to consider negative symptoms of mental disorder?
- Occupational therapy to consider ability to perform activities of daily living.
Record all the detail of the assessment process and a clear outcome:
- If the person does not have capacity, their best interests must be determined for that decision, involving a further assessment process;
- If the person has capacity, this is not the end of the story; don’t walk away; be clear when to reassess (elapse of time/development of relationship/ health decline/event triggers).
Further reading and resources
Making safeguarding personal
Cooper, A. (2019) Myths and Realities about Making Safeguarding Personal, Local Government Association.
Making Safeguarding Personal, Local Government Association
Braye S., Orr D. and Preston-Shoot M. (2011) Self-Neglect and Adult Safeguarding: Findings from Research. London: SCIE.
Braye S., Orr D. and Preston-Shoot M. (2014) Self-Neglect Policy and Practice: Building an Evidence Base for Adult Social Care. London: SCIE.
Braye, S., Orr, D. and Preston-Shoot (2020) Self-neglect: A Practice Tool (3rd edition). Dartington: Research in Practice for Adults.
Braye, S., Orr, D. and Preston-Shoot, M. (2017) ‘Autonomy and protection in self-neglect: the ethical complexity of decision-making’, Ethics & Social Welfare, 11, 4, 320-335.
Cameron, E. and Codling, J. (2020) ‘When mental capacity assessments must delve beneath what people say to what they do’, Community Care, October 28
Orr, D., Braye, S. and Preston-Shoot, M. (2017) Working with People who Hoard: Frontline Briefing, Dartington: Research in Practice for Adults.
Preston-Shoot, M. (2021) ‘On (not) learning from self-neglect safeguarding adult reviews’, Journal of Adult Protection, 23, 4, 206-224.