WESTMINSTER CITY COUNCIL

Protocol 2015

Supporting adults with hoarding and self-neglect behaviours

A co-ordinated approach

Step by step best practice guide

Westminster Adult Social CareCity West Homes

Central and North West London NHS Foundation TrustCentral London Community Healthcare NHS Trust

Environmental HealthLondon Fire Brigade

The self-neglect and hoarding policy has been developed by and is shared with the Royal Borough of Kensington and Chelsea

PolicyIntroductionAims and Objectives of the ProtocolPrinciples of Effective WorkingDefinitionsChild ProtectionBalancing Rights and Risks and the Mental Capacity Act 2005Information SharingResolution of DisagreementsProceduresReferral and ResponsesAssessment of the self-neglect/hoarding for the PanelThe Self-neglect/ Hoarding Panel Monitoring and Review of the ProtocolStep by Step Flow ChartAppendix 1 -Alert/Referral formAppendix 2- Risk AssessmentAppendix 3- Panel AgendaAppendix 4- Legal TableAppendix 5- Useful Information

POLICY

1.0 Introduction

1.1 Managing the balance between protecting adults at risk from self-neglect or hoarding behaviours against their right to self-determination is a serious challenge for services. Working with people who are difficult to engage can be exceptionally time consuming and stressful for all concerned. A failure to engage with people who are not looking after themselves, whether they have mental capacity or not, can have serious implications for the health and well-being of the person concerned and risk of reputational damage to the local authority or health agencies involved.

1.2 Self-neglect and hoarding behaviours can also put neighbours, family and animals at risk of harm with the risk of fires, gas and water leaks and infestations spreading.

1.3 This protocol offers guidance to operational staff and managers on how the needs or presenting problems of difficult to engage adults who hoard or self-neglect should be addressed. It suggests multi-agency partnership working to determine the most favourable approach for achieving engagement with the adult. This is in conjunction with a support plan for delivering the agreed goals and achieve the best outcome or solution.

1.4 The Care Act 2014 came into force in April 2015. The Act fundamentally reforms how the law works, prioritising people’s wellbeing, needs and goals so that individuals will no longer feel like they are battling against the system to get the care and support they need.

1.5 It highlights the importance of preventing and reducing needs, and putting people in control of their care and support. An assessment must be person centred, involving the individual and any carer that the adult has, or any other person they might want involved. Looking forward this protocol has been developed with these principles in mind.

1.6 In the majority of cases, the Community Care Assessment/Care Programme Approach, review and risk assessment procedures should be the route to provide an appropriate intervention in situations of self-neglect or hoarding. This is particularly where the person engages with support offered and effective interventions to reduce the risks are established.

1.7 Often, the cases that give rise to the most concern are those where an adult refuses help and services and is seen to be at grave risk as a result. If an agency is satisfied that the adult has the mental capacity to make an informed decision on the issues raised, then that person has the right to make their own choices. But, this should not be seen as ‘an all or nothing’ strategy. It is in these circumstances staff need to follow the principles and procedures in this protocol.

1.8 With reference to the Pan London Safeguarding Adults multi-agency Policy and Procedures1, it is important to remember that self-neglect on the part of an adult at risk will not usually lead to the initiation of safeguarding adult procedures unless the situation involves a significant act of commission or omission by someone else with established responsibility for an adult’s care.

1 Protecting Adults at Risk: London multi-agency Policy and Procedures 2011 SCIE Report 39

1.9 The lead coordinating agency for managing cases of self-neglect or hoarding will have responsibility to:

Ensure the engagement of all appropriate agencies in responding to the referral and the ongoing work.

Coordinate a response to Hoarding or self-neglect referrals Manage the Self-neglect and Hoarding Panel Reach a decision as to whether using the available legislation is an

appropriate course of action. Plan and co-ordinate further actions including, inspection, cleaning, repairs

and possible re-housing or temporary accommodation options in collaboration with the appropriate agencies/departments

2.0 Aims and Objectives of the Protocol

2.1 This protocol provides a framework of intervention drawing on best practice approaches with reference to the legal context to prevent adults who self-neglect or hoard coming to harm as a result. This includes an escalation procedure to a multi-agency Hoarding and Self-neglect Panel.

2.2 Hoarding and self-neglect behaviours are not the same and do not always present together. However there are often similarities in terms of health and social issues e.g. isolation of the individual and lack of engagement with services that can present a real challenge to practitioners where there is ongoing and significant risk of harm. With this in mind this protocol has been developed to provide support to practitioners in the engagement of the service user and the management of risk.

2.3 Referrals into the panel will apply where an adult has been identified as

self-neglecting or where hoarding behaviours have put them or others at riskwhich could result in significant harm and

the shared multi-agency approach has not been able to mitigate the risk of significant harm.

2.4 See APPENDIX 2 for the hoarding and self-neglect risk assessment form. A score of moderate or above would indicate the need for a referral to the panel.

3.0 Training

3.1 Member agencies are to encourage all levels of staff to participate in the multi-agency self-neglect and hoarding awareness training provided under the Tri-borough Learning and Development Programme to ensure a consistent and effective response when formal complaints concerns or anxieties have been raised.

4.0 Principles of Effective Working

4.1 Whilst it has been recognised that self-neglect is not managed under the adult safeguarding procedures, the same principles that apply to safeguarding will apply to self-neglect or hoarding cases; there will be a multi-agency response to the concerns raised. It is recognised that the sheer complexity of the multiple causes that may be at play in any given case of hoarding or self-neglect renders a multi-agency strategy indispensable. Central North West London Mental Health Foundation Trust (CNWL) provides the care

management functions on behalf of the local authority to adults with mental health needs under the section 75 agreement. The Trust will therefore also take the lead coordinating role on such cases where mental health is the main presenting need of the adult at risk.

4.2 If concerns relate to acceptance of health care or treatment, the Adult Safeguarding Lead for the Clinical Commissioning Group2 must be informed, regardless of whether the case is being considered under safeguarding procedures.

4.3 There is an expectation that all professionals and agencies engage in full partnership working to achieve the best outcome for the adult who chooses to hoard or self-neglect whilst satisfying organisational responsibilities and duty of care. The focus should be on person centred engagement and risk management.

4.4 Risk assessment and risk management should be seen as an essential part of the process when there are concerns. Arrangements should be made for monitoring and where appropriate, making proactive contact to ensure that the adult’s needs and rights are fully considered in the event of any changed circumstances. 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 needs to become a core part of placing people at the centre of their own care and support.

4.5 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 person has mental capacity to make decisions specifically related to their care.

4.6 ‘Duty of Care’ 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.

4.7 Staff also need to be aware of service users rights in law and of the duties and responsibilities of the council. A summary of these can be found in Appendix 4.

4.8 This guidance provides greater focus on those individuals deemed to have mental capacity but when presented with the risks or statutory actions that may be taken, refuses to engage in solutions to resolve the presenting problems. In such cases, the individual chooses to live in a situation that places themselves and potentially others at risk of harm. This will often require a professional judgement. Such situations might include:

Portraying eccentric behaviours/lifestyles, such as hoarding or antisocial behaviour causing social isolation. This can impact on the living environment causing health and safety concerns

2 Clinical commissioning groups (CCGs) are NHS organisations set up by the Health and Social Care Act 2012 to organise the delivery of NHS services in England- West London CCG covers Kensington and Chelsea and north Westminster. Information can be found at http://www.westlondonccg.nhs.uk

Neglecting household maintenance, and therefore creating hazards and risking their tenancy.

Poor diet and nutrition, evidenced for example by little or no fresh food,or what there is being mouldy or unfit for consumption

Refusing to allow access to health and/or social care staff in relation topersonal hygiene and care

Lack of personal or domestic hygiene that exacerbates a medical condition that could lead to a serious health problem

5.0 Definitions

5.1 It is important that staff be familiar with, and recognise the risk factors associated with self-neglect or hoarding. Often age related changes will result in functional decline; cognitive impairment; frailty or psychiatric illness will increase vulnerability for abuse, neglect and self-neglect as well as increase the potential for developing a number of underlying health conditions

What is Self-neglect?

5.2 The complexity and multi-dimensional nature of self-neglect means that it can often be difficult to support or protect the adult at risk. Staff must accept a person’s autonomy and their right to make lifestyle choices and refuse services if they maintain the mental capacity to make such choices.

5.3 Braye, Orr and Preston Shoot3 refer to the fact that self-neglect could have complex causes and manifestation but there is no certainty of understanding about how the range of factors involved might lead to particular behaviours or be amenable to interventions. What is clear is that whilst researchers have sought to isolate factors they have been unable to identify clear causation.

5.4 Complex dilemmas arise when people appear to choose rationally or intentionally to self-neglect. In such cases there are often clinical, social and ethical decisions to be made in its management. A review of literature suggests the following definition for self-neglect:

• Persistent inattention to personal hygiene and/or environment• Repeated refusal of some/all indicated services which can reasonably be

expected to improve quality of life• Self endangerment through the manifestation of unsafe behaviours

5.5 SCIE produced some helpful guidance4. It states:

At one end of the spectrum, self-neglect is seen as a psycho-medical condition, in some cases a psychiatric syndrome, which may be associated with other accompanying mental disorders. Others take issue with a disease model of self-neglect, preferring to adopt a socio-cultural model which at its extreme sees self-neglect as a social construct influenced by social, cultural and professional values, in effect a value judgement as opposed to an objective phenomenon. In between lie social

3 Conceptualising and Responding to Self-neglect: the challenges for adult safeguarding’- Journal of Adult Protection 2011 Vol 13 No 4-Suzie Braye, David Orr and Michael Preston Shoot4 Self-neglect and Adult Safeguarding: Findings from Research 2011 SCIE Report 46

psychological models that consider the interplay of factors external and internal to the individual.

Research has sought to isolate factors, biological, behavioural and social, that may be associated with, if not causative of, self-neglect, but without being able to integrate the correlations within an overarching explanatory model. Models of self-neglect thus encompass a complex interplay between mental, physical, social and environmental factors. Executive dysfunction the inability to perform activities of daily living, even though the need for them may be understood – is seen as significant, and when this is accompanied by an inability to recognise unsafe living conditions, self-neglect may be the result.

5.6 The research reveals that a strong emphasis is placed by practitioners on the importance of interagency communication, collaboration and the sharing of risk.

What is Hoarding?

5.7 Compulsive hoarding is a specific type of behaviour marked by acquiring and failing to dispose of a large number of items that would appear to have little or no value to others, severe cluttering of the person's home so that it is no longer able to function as a viable living space, and significant distress or impairment of work or social life.

5.8 It can be difficult to identify a person who hoards as the indicators are not always clear and not all hoarders carry the same characteristics. Like most people, hoarders may accumulate items for:

Sentimental value ‐ emotional attachment or to remember an important life event. Utility value ‐ the item is or could be useful. Visual value ‐ the item is considered to be attractive or beautiful.

5.9 However, the items kept by hoarders often differ from those kept by the general population and the behaviour differs in extent. The issue may be ‘acquisition’ of additional items or inability to discard existing items (including rubbish in some cases). A case may be considered as hoarding, if for example “the clutter is so severe that it prevents or precludes the use of living spaces for what they were designed for”.

5.10 In a case of hoarding, it often comes to the attention of professionals, housing providers or statutory agencies when this behaviour begins to have an impact on the person and/ or their neighbours. For example, where there is a health and safety risk, neighbour nuisance, or obstruction of a landlord duty (e.g. to repair).

5.11 People who hoard often view their items as precious, or useful. They do not regard their belongings as trash or rubbish, and the notion of downsizing their belongings can illicit high levels of intolerable anxiety. In order to effectively work with people who hoard it often necessitates working at a very slow rate, in order to slowly build up trust and engagement.

5.12 It is essential therefore to build an understanding with the person regarding the meaning of the collected items to the individual, and understand their perceived

barriers to organising and downsizing their belongings. Unfortunately however due to lack of insight or motivation and high levels of risk, local authority and health agencies are forced to intervene. Where this occurs, without the input and consent of the service user, it is highly likely that following an enforced 'declutter' and 'deep clean', the hoarding behaviour will continue, as the underlying cause of the hoarding, and their inability to manage the hoarding has not been addressed.

5.13 Some hoarders manifest the following characteristics:

Isolated or extremely private individuals, often living alone; Showing signs of self-neglect and/or ‘eccentric’ behaviour; and Have experienced loss or trauma ‐ death of a close relative, separation or

divorce, redundancy or other serious life event.

5.14 However, many hoarders may be well‐presented to the outside world, appearing to cope with other aspects of their life quite well, and giving no indication of what is going on behind closed doors.

5.15 Health implications can be:

Living in squalid conditions, infestations and associated diseases; Limited cooking, bathing, heating. Sometimes without connected utilities ; Self‐neglect, leading to other medical complications; Lack of mental capacity leading to unwise decision‐making; Anxiety and depression; and Serious risk to life

5.16 Associated disorders may include:

Post-traumatic stress disorder (PTSD) Obsessive–compulsive disorder (OCD) Obsessive–compulsive personality disorder Dementia Depression and anxiety Hoarding can be present in the absence of cognitive impairment or mental health

difficulties. It is also common for people who hoard to have difficulties making decisions and to have poor organisational skills, which impede their ability to address their hoarding.

5.17 Safety Implications

Risk of fire Accidents in the home Buried under items Access for emergency services Access for any professionals

6.0 Child Protection and other vulnerable adults

6.1 If a child is at risk due to the self-neglect or hoarding behaviours of the adult, then engagement of the Pan London Child Protection Policy and Procedures5 is essential.

6.2 There may also be other vulnerable or dependant adults living with the person who are also put at risk by the behaviours of the person hoarding or self-neglecting.

7.0 Carers

7.1 For the first time carers will have the same rights as service users 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 coming into force.

7.2 Where an individual provides or intends to provide care for another adult, local authorities must consider whether to carry out a carer’s assessment, if it appears that the carer may have any level of needs for support.

7.3 Carers’ assessments must seek to establish the carer‘s need for support, and the sustainability of the caring role itself – practical and emotional support. The local authority must include a consideration of the carer’s potential future needs for care and support.

7.4 Factored into this must be a consideration of whether the carer is currently able, and whether the carer will continue to be able to care for the adult needing care. The consideration of sustainability must also involve a consideration of whether the carer is willing, and likely to continue to be willing, to provide care.

7.5 The carer’s assessment must also consider the carer’s activities beyond their caring responsibilities and the impact of caring upon those activities. This impact should be considered in the short and long term.

8.0 Balancing Rights and Risks and the Mental Capacity Act 2005

8.1 The nature of any intervention will centre on the question of whether the adult concerned has the mental capacity to make decisions that have legal force. A person may have mental capacity and yet disagree with the views of the local Social Services authority- or other agency. The right to take what may be seen as a contrary view is a right that can no longer be taken away from a person who has mental capacity to make that decision. It does not preclude the local social services authority entering into a discussion with the service user and exploring the basis for a contrary view. It also does not preclude agencies working together to share information in the vital interest 6 of the person and assess the risks even if the person does not want any support.

8.2 It is important that staff accept the rights of service users to make lifestyle choices and to refuse services. Critical to this however is assessing the decision-making

5 London Child Protection Procedures - 4th edition (Apr 2011)

6 Vital interest is a term used in the Data Protection Act 1998 to permit sharing of information where it is critical to prevent serious harm or distress or in life threatening situations.

Mental Capacity of service users whilst taking account of the risks and safety implications of the decisions being made.

8.3 The Mental Capacity Act 2005 states that there should always be a presumption of capacity, unless the adult has been assessed and found to lack capacity for a particular decision. Any assessment of mental capacity must be decision specific. This means that a person may be able to make decisions about one aspect of their life but may lack capacity in another. In cases of hoarding or self-neglect, capacity should be assessed relating to particular decisions about refusal of support and care.

8.4 Staff must be aware of the 5 principles of the Mental Capacity Act:

1. Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise.

2. The right for individuals to be supported to make their own decisions ‐ people must be given all appropriate help before anyone concludes that they cannot make their own decisions.

3. Individuals must retain the right to make what might be seen as eccentric or unwise decisions.

4. Best interests ‐ anything done for or on behalf of people without capacity must be in their best interests.

5. Least restrictive intervention ‐ anything done for or on behalf of people without capacity should be an option that is less restrictive of their basic rights and freedoms of action‐ as long as it is in their best interests.

8.5 The assessment of Mental Capacity is a two stage test ‐ to check whether there is an impairment of, or disturbance of the mind, sufficient to affect decisions, and then to test whether it is affecting this particular decision. Where the initial mental capacity test appears to indicate a lack of capacity, an initial assessment should be documented using the core assessment tool7.

8.6 Capacity can be reassessed when appropriate, as an individual’s capacity may change over time, in different circumstances and for different decisions. Where the person has capacity they may still be offered or signposted to appropriate support.

8.7 It is recognised that establishing a positive relationship with service users is crucial in gaining their trust. The professional judgement of staff can make a positive and effective contribution to the early recognition and prevention of harm.

8.8 In regards to self-neglect, the literature makes a distinction between the adults ability to self-care with that of making a lifestyle choice8. Assessment therefore needs to tease out this distinction in order to identify the most appropriate support to the individual.

8.9 There is also the matter of whether despite having mental capacity to make decisions the adult has ‘executive capacity’9 to carry out the decision.

7

8 Conceptualising and Responding to Self-neglect: the challenges for adult safeguarding’- Journal of Adult Protection 2011 Vol 13 No 4-Suzie Braye, David Orr and Michael Preston Shoot9 Executive dysfunction-the inability to perform activities of daily living even though the need for them may be understood

‘Where decision making capacity is not accompanied by executive capacity the individual may not in fact be in a position to exercise autonomy and professional intervention may appropriately take a different approach in order to safeguard wellbeing’10

8.10 From a defensible practice point of view recording the rationale for decisions to intervene or not intervene in any given situation is essential.

9.0 Information Sharing

9.1The information-sharing protocol sets out the following guidance for sharing information:

• sharing information with consent• sharing information without consent• sharing information when the person does not have capacity to consent

Sharing Information with Consent

9.2Adults have a right to independence, choice and self-determination. This right extends to them being able to have control over information about themselves and to determine what information is shared. Even in situations where there is no legal requirement to obtain written consent before sharing information, it is good practice to do so.

Sharing Information without Consent

9.3The Data Protection Act 1998 will allow the sharing of information without consent in an adult’s vital interest.

9.4Vital interest11 is a term used in the Data Protection Act 1998 to permit sharing of information where it is critical to prevent serious harm or distress or in life threatening situations.

9.5If the adult at risk of self-neglect or hoarding behaviours has the mental capacity to make informed decisions about their health and well-being and they do not consent to a referral, this does not preclude the sharing of information under this protocol with relevant professional colleagues.

9.6This is to enable professionals to assess the risks and to be confident that the adult is being fully supported and is aware of all the options. This will also enable professionals to check the safety and validity of decisions made. It is good practice to inform the adult at risk that this action is being taken unless doing so would increase the risk of harm.

9.7If the adult at risk has the mental capacity to make informed decisions about their health and well-being and they do not consent to a referral being made or the sharing of information but others may be at risk,

10 Conceptualising and Responding to Self-neglect: the challenges for adult safeguarding’- Journal of Adult Protection 2011 Vol 13 No 4-Suzie Braye, David Orr and Michael Preston Shoot11 Schedule’s 2 and 3 Data Protection Act 1998 outlines the conditions for sharing information fairly and lawfully.

practitioners have a duty to share the information with relevant professionals to prevent harm to others.

Sharing information when the person does not have capacity to consent

9.8If an adult at risk lacks capacity to make informed decisions about maintaining their health and well- being and they do not consent to a referral under this policy, professionals have a duty to share the information in their best interests under the Mental Capacity Act 2005.

General Principles

9.9The adult’s wishes should always be considered, however, supporting an adult at risk from self-neglect or hoarding behaviours establishes a general principle that concerns can be reported more widely and that in so doing, some information may need to be shared among those involved.

9.10 An organisation should obtain the adult at risk’s consent to share information and should routinely explain what information may be shared with other people or organisations.

9.11 Difficulties in working within the principles of maintaining the confidentiality of an adult should not lead to a failure to take action to support the adult in line with this protocol.

9.12 Whether information is shared with or without the adult at risk’s consent, the information shared should be:

necessary for the purpose for which it is being shared shared only with those who have a need for it be accurate and up to date be shared in a timely fashion be shared accurately be shared securely.

10.0 Engagement

10.1 One key to successful interventions with adults who are not engaging with support on offer but remain at risk is to build a relationship with the individual that allows their perspective to gradually unfold and that would inform decisions.

10.2 Respecting an adult’s independence does not and should not mean disengaging from continued involvement with them. On-going commitment allows time for a fuller assessment including decision making capacity to be monitored as well as allowing options to emerge and possible acceptance of interventions over time.

10.3 In certain instances a more effective initial approach is to tackle the issues that the adult has concerns about which might include health issues or lack of social networks rather than just a focus on the self-neglect.

10.4 Fully informed multi-agency collaboration can help promote genuinely independent choice while minimising threats to this choice. Paying attention therefore to the range of available interventions in order to identify the least restrictive options on offer should be a priority. Where all these ingredients are present, it becomes possible to achieve the optimum balance between autonomy and support.

10.5 Consideration should be given to invite the person who is self-neglecting or hoarding to the panel. This may be one way to effectively engage the individual in the issues.

11.0 Resolution of Disagreements and Complaints

Interagency

11.1 Any interagency disagreements about case management should be resolved locally. As a last resort such disagreements can be brought to the panel for discussion.

Complaints

11.2 Complaints about specific cases that have been escalated to member level can be signposted to the panel for a response.

PROCEDURES

12.0 Referral and responses

Referrals

Cases that are known

12.1 Referrals can come from a range of sources including from the person themselves, neighbours, family or friends and referrals from other professionals.

12.2 All referrals made by external agencies will come via Westminster Adult’s Access Service using the alert document SNHA1 (see appendix 1) where they will be processed, entered on to Frameworki and sent to the appropriate Lead Agency.

12.3 The contact details are…

Tel: 020 7641 1175

Fax: 020 7 641 5426

E-mail: adultsocialcare@westminster.gov.uk

Secure e-mail: k.wilde@westminster.gcsx.gov.uk

12.4 For cases that are open and being managed by Adult Social Care or the Mental Health Trust, and the self-neglect or hoarding behaviours have worsened over time, the management of such cases needs to be progressed in line with this protocol by the allocated team.

Cases not known – criteria for Lead Agencies

12.5 Referrals for those cases that are not already known to Adult Social Care and are presenting as below, will also be received into the Access team for screening.

Individuals who have the following needs will be passed to Adult Social Care who will become the Lead Agency…. Community Care needs Safeguarding Self- neglect Lack Mental Capacity

If none of the above apply then the most appropriate agency will take the lead. Please see criteria below.

The criteria for referrals to be sent to Housing is:-

City West Homes will be the lead agency where:

 there is a clear breach of tenancy conditions  the resident is not known to adult social services (or any other support agencies)  the resident is not considered vulnerable or have mental health issues

Environmental Health will be the lead agency where:-

Hoarding & Self-Neglect Protocol

Residential EH

Referral from Access Team, including case information pack and Lead Agency details, sent to REH Hoarding & Self Neglect Point of Contact:Ian Hennessy

ihennessy@westminster.gov.uk

Case delegated to district EHO for arrangement of Case Conference. EHO examines case information pack.

District EHO examines case information pack before Case Conference. Attends Case Conference on behalf of REH, and carried out any actions assigned to REH

Case delegated to district EHO for attendance at Case Conference

EHO arranges and sends out Case Conference invite to representatives from partner agencies

Case conference held. Attendees noted, minutes taken, and agreed actions with timescales recorded.TSO to take minutes and circulate.Follow up case conference diarised.

LEAD NON-LEAD

12.6 Some cases will be referred during the person’s hospital admission or presentation in A&E or as an outpatient. These cases should also be signposted to social services Access Team to be screened initially by the social services Access Information and Advice Officers (IAO)

Adult Social Care Response

12.7 All referrals must be sent to the Adult’s Social Care Access Team with a copy of a completed self-neglect/hoarding risk assessment form (see Appendix 2) the clutter image rating tool (Appendix 2) indicating the level of the individuals hoard and a completed self-neglect/hoarding risk assessment form. Access will complete a referral and upload all documents on to Frameworki. Once a referral has been completed by the Access team, the case with all documents will be forwarded to the most appropriate lead agency (see criteria’s above – 12.5) for on-going engagement and risk management as appropriate.

12.8 In many instances it would be beneficial for joint assessments to be conducted with a mental health practitioner as accurate assessment of such cases can be challenging. This may not result in on-going work from the mental health trust.

12.9 This referral path will ensure that all self-neglect/hoarding cases are dealt with in a uniform way across all departments and by all partners of the Council.

Cases referred into Central North West London NHS Foundation Trust (CNWL)

12.10 Where joint assessment with mental health services is indicated, a referral should be made to the Assessment and Brief Treatment Team (ABT).  If, following a mental health assessment, the person is identified as being at low risk according to The Self Neglect/Hoarding Risk Assessment decision grid, ABT will provide short term interventions  (up to a maximum of   six sessions)  to that individual according to assessed need.

 2)    Where an individual has been assessed by ABT and has been identified as being

at moderate or severe risk as per the Self Neglect/Hoarding Risk Assessment decision grid, ABT will attend the Self Neglect/Hoarding panel. 

3)    Should the panel decide that ongoing interventions from Mental Health Services is required, people with longstanding secondary care MH needs will be referred to other MH services.

4)    All teams need to be briefed on the final protocol and understand their working relationships with RBK&C Adult Care Teams.  

Feeding Back to the Referrer

Case conference held. Attendees noted, minutes taken, and agreed actions with timescales recorded.TSO to take minutes and circulate.Follow up case conference diarised.

12.11 Concerns about people who hoard or self-neglect often carry high levels of public and professional anxiety. It is important therefore for the Lead Agency to feedback to the referrer on a need to know basis what the response to the referral is.

13.0 Assessment and multi-agency meetings

13.1 Before escalation to the hoarding and self-neglect panel, an assessment of need will be completed and a series of multi-agency meetings will be convened and coordinated by the Lead Agency. It may be appropriate to have a senior member of staff chairing that meeting or in attendance. All relevant agencies need to be considered to be invited e.g. Adult Services, Environmental Health, London Fire Brigade, Mental Health Trust, Community Health Services, Housing, Police TMO etc. This is to ensure a wide range of professional views are obtained and intelligence is shared. The individual must also be invited to attend and contribute towards these meetings.

13.2 The purpose of the meeting is to establish the assessed needs of the adult, the level of risk to the individual and others, the person’s engagement or lack of with the interventions, the decisions that need to be made and what the person’s mental capacity is in relation to the decision e.g. to have a blitz clean, to accept services.

13.3 Establishing the mental capacity of the individual is a vital aspect of care planning and risk assessment when working with an adult who is self-neglecting or hoarding and refusing services, or where there are concerns about others making decisions on their behalf. Capacity Assessments will need to be completed by Adult’s Social Care or the MH Trust.

13.4 The assessment also needs to take into account the following factors which would assist in determining a support plan

Physical health Psychological state and mental health- e.g. depression Personality traits Functional and cognitive abilities Nutritional intake Social networks Ability to perform activities of daily living Social and medical histories Understanding the person’s perception of the situation and motivations Risk assessment of the home and the individual Historical perspective to inform whether the current situation derives from a life

pattern Economic resources to the individual Alcohol and/or substance abuse Traumatic histories and life-changing events The adult’s perceived self-sufficiency and receptiveness to support

14.0 Referrals to the Panel

14.1 There will be an expectation that a multi-agency strategy meeting and case conferences have been held and actions taken to address risks prior to presentation at panel. The panel will require copies of the minutes of these meetings; the clutter

score index; and risk assessments prior to a case being presented. The lead agency completing the referral to panel will need to come to panel to present the case or send a representative.

15.0 The Self-neglect/ Hoarding Panel

15.1 The panel is designed to complement and enhance the work that should already be on going with a person deemed to be at moderate to high risk. Therefore it is

expected that multi-agency network meetings are convened, coordinated and led by the Lead Agency prior to a referral to the panel. This is to ensure all options have

been explored including attempts to engage the individual.12

15.2 If following a case conference and risk assessment the person is still at moderate to high risk of harm and the person may not be engaging or there is difficulty in engaging other agencies, the case should be referred to the Hoarding/Self-neglect Panel by the Lead Agency.

15.3 The Panel will discuss cases which have been presented to them with a view to determining the next steps, particularly where cases are complex or have reached a ‘sticking point’ (i.e. such as access being denied) and organisations have exhausted their internal procedures.

15.4 The Panel’s role is to provide guidance as well as enhance communication between agencies, and assist with the coordination of cases where cross‐organisational barriers may surround the case. The Panel will be expected to consider any vulnerability or equality and diversity issues within their recommendations.

15.5 The Panel will also review previously presented cases to establish if agreed actions have been carried out and whether risks have been reduced.

15.6 The decision for a review date will be set by the Panel based on the level of risk and the timescale for the agreed actions.

15.7 Panel members will be expected to share best practice or legal changes, especially within their specified field, with the rest of the Panel. This knowledge will also be shared with partner organisations who have signed up to the protocol.

15.8 The Panel is comprised of named representatives who hold a strategic role from a range of agencies. The following services will be required to be represented at the Panel meetings:

Environmental Health Adult Social Care Community Mental Health (AMHP), Assessment and Brief Treatment and

Recovery service lines, CMHT older adults Housing Community Health London Fire Brigade

12 See ASC CM Guidelines for dealing with complex cases and/or/ ASC CM guidelines for working with people who hoard or self-neglect.

15.9 In cases where lead officers cannot attend, it would be expected that a deputy attends in their place.

15.10 In addition the panel may require the expertise of the following services at some of the meetings:

Metropolitan Police Acute Health Services Primary Care Children & Young People’s service Safeguarding lead Voluntary Sector org Pest Control LAS Psychology

16.0 Monitoring and Review of the Protocol

16.1 The steering group that is responsible for the development of this policy will meet on a six monthly basis in order to monitor and review the implementation of this protocol. The functions of this group would include:

To monitor the numbers of self-neglect and hoarding cases in RBKC To ensure constructive partnership working for the continued implementation of

this guidance To review and update this guidance annually

Step by Step Process flow chart once alert received

Follow Practitioner guidelines ‘Self neglect and Hoarding guidance’

Lead Agency convenes a multi-agency meeting to review risk, assess capacity to make relevant decisions and agree an action plan.Subsequent meetings are held to review progress on actions and measure risk.

If the multi- agency strategy meetings and case conference actions have not managed to reduce risk or improve the situation for the individual, a referral is made to the Self

neglect/Hoarding Panel. The panel meeting brings together all the relevant services. The meeting agrees actions which

may include formal intervention using legislation.

Date should be agreed by panel for the Lead Agency to represent the case with updates on outcome of the agreed

interventions.

Actions agreed by the panel should be carried out with continued multi-agency input and communication.

Self-neglect/hoarding alert, image clutter rating and completed SNAH risk assessment are

received & further information gathered by Access Team.

Frameworki is completed.Following the criteria, a Lead Agency is identified.

Lead Agency brings case back to panel on agreed date to give feedback and agree any further actions.

Self-neglect/hoarding Alert Form (SNHA1)Adult Social Care CONTACT DETAILSSocial Services Line’: 020 7361 3013Emergency Duty Team: 020 7373 2227Fax: 020 7368 0314 (office hours only)Secure Email: socialservices@rbkc.gov.uk.cjsm.netEmail: socialservices@rbkc.gov.uk

DETAILS OF SELF-NEGLECT/HOARDING CASENAME Fi User ID

Address

DOB AGE GENDERUSER GROUP Learning Disability Mental Health

Older People Physical & SensorySubstance Misuse Other vulnerable people

ETHNIC ORIGIN White British White Irish Other White

White Traveller of Irish Heritage

White Gypsy/Roma

Black Caribbean Black African Other BlackIndian Pakistani BangladeshiChinese Other Asian Mixed White

and Black CaribbeanMixed White and Black African

Mixed White and Asian

Mixed White and Chinese

Other

DATE & TIME OF REFERRAL

DATE & TIME ALERT REPORTED

TENURE Home Owner Lease Holder

Council Tenant Private rentedHousing Association Tenant Temporary AccommodationOther

SOURCE OF REFERRAL

Neighbour GP

Estate Officer Floating Support WorkerSocial Worker/ Community Nurse PoliceOther Hospital

Appendix 1

DETAILS OF THE PERSON

COMPLETING THIS FORM

NAME JOB TITLE / PROFESSION

CONTACT DETAILS DATE

DETAILS OF THE TEAM MANAGER IF OPEN TO A TEAM

NAME JOB TITLE / PROFESSION

CONTACT DETAILS

DATE

APPENDIX 2

Self-neglect/Hoarding Risk Assessment Tool

Table 1-Likelihood

Descriptor Description ScoreAlmost certain Will probably occur frequently 5Likely Will probably occur frequently but not as a persistent issue 4Possible May occur 3Unlikely Not expected to occur 2Rare Would only occur in exceptional circumstances 1

Table 2 ConsequencesLevel Injury/risk of harm to service

userInjury/risk of harm to others

Cost to individual/and others

5 =Catastrophic Unanticipated death (by fire?), multiple severe injury, permanent disability, could be caused by falling items or result of non compliance with medication or treatment.

Development of pressure areas grade 3 or above, lack of continence management.

Unable to use majority of rooms, disconnection of all utilities

Eviction/ legal enforcement by Environmental health and/ or housing.

Severe infestation that could spread, causing infection or injury

Severe odour

Severe infestation to neighbours and surrounding properties.

Fire spreading from affected property.

Inability to safely access and use communal areas due to clutter impinging on these areas from affected property.

Severe odour in communal areas

Death, significant deterioration in physical and/ or mental health and wellbeing, relapse to using substances, total loss of independence etc

Enforcement by Environmental health which will be charged to the individual.

4 =Major Major permanent loss of function related to self-neglect, lack of compliance with medical treatment.Significant self-neglect requiring hospitalisation,

Development of pressure areas grade 2 or above, poor continence managements

Severe infestation that could spread

Limited safe access to communal areas,

Infestation.

Moderate odour in communal areas

Prolonged medical admission, change to living arrangements, total loss of independence, impact on physical and/or mental health and well-being,

Unable to use most rooms, lack of utilities

Non fatal fire

Strong odour3=Moderate One or more rooms unusable,

or use severely impaired by level of clutter, this may include rubbish.

Some items may increase risk of severity of fire – such as hoarded paper.

Some loss to independence, some level of self-neglect/non-compliance, i.e. inconsistent engagement with medical staff or medication management.

Poor engagement with continence management but some compliance

May be some small items in communal area, but not constantly.

Light odour in communal areas.

psychological, anxiety, depression as a reaction requiring medical intervention, pain and discomfort, semi-permanent, loss of independence etc

2 =Minor Small collections of items, not rubbish and not causing obstructions.

Moderate level of engagement with medication and care,

Responds to relationship building and rapport with professionals.

no real loss to independence or level of function

1= Insignificant Some small collections of items, not impacting on use of any rooms.

Engages fairly well with support.

No loss of independence

Risk Assessment Decision Grid

Lik

elih

ood Consequence        

5 5 10 15 20 25

4 4 8 12 16 20

3 3 6 9 12 15

2 2 4 6 8 10

1 1 2 3 4 5

1 2 3 4 5

In the case of the 5x5 matrix, the action levels are:

Guidance on how to use the risk assessment decision tool

The primary aim of the Self-neglect/Hoarding Risk Assessment is to assess: individuals for the current risks that they face potential risks they may face

The secondary aim of the Self-neglect/Hoarding Risk Assessment is to assess: reasonably foreseeable risks to the individual from their behaviours reasonably foreseeable risks to the individual and other service users if safeguards or

improvements are not put in action to address their behaviours

Concept of risk

The aim of undertaking a risk assessment is to identify the hazards associated with a situation and to assess the seriousness of these hazards. To then formulate a risk management plan to reduce the associated risks to a minimum or at least to an acceptable level.

What is a hazard?

15-25

5-12

1-4

MODERATE RISK -Multi agency input required and referral to Panel

HIGH RISK-Convene emergency multiagency network meeting to agree actions and responsibilities and referral to Panel

LOW RISK-Liaise with other professionals, offer info to Service User

A hazard is anything with the potential to cause harm; every hazard has likelihood and a consequence. A hazard can be absolutely anything – person, behaviour e.g. non engagement/ refusal of services, personality, object, illness, medical condition, disability impairment, incapacity, addiction, dependency, environmental factor, or situation.

Risk is the likelihood that a hazard will cause a specified harm and usually qualified by some statement of the severity of the harm or consequence.

Likelihood

This is a measure of the chance that the hazard will occur. Example of low likelihood is where a person is engaging with the risk management plan and the risks are reduced. Example of a high likelihood is where the person is fully capacious but is refusing to engage with services to reduce the risks.

Consequence

This is the outcome of the hazard. It is assessed according to the impact the event had on the person. A severely cluttered house occupied by a frequent smoker could result in catastrophic consequence for the service user and others.

Likelihood x Consequence = RISK

The risk assessment uses a traffic light system with Green being universally used as safe to move forward. Red signifies stop and Amber being preparing to stop. In this case Red means a halt to hazardous activities needs to occur with immediate effect and safeguards put in place. Amber signifies moving forward with caution which may mean modifying the risk with some safeguards. Green means it is safe but also looking to be sure it is safe with a monitoring or review plan.

Recording needs to be specific for example stating that the risk or danger may be physical harm caused by falling over clutter. Risks or dangers might be: cuts, bruises, fractures. it might be necessary to put death as a possible risk or danger. It is therefore exposure to a chance of loss or injury.

Risk management strategies

There is an order of hierarchy of risk control that can be used to help decide on a risk control, with risk control options at the top of the hierarchy being the best measure because it is much less reliant on other variables doing something to allow the risk to persist. We can categorise risk control measures as follows:

Reducing the hazard

This would mean reducing the impact of the person’s behaviour. A package of care may reduce the amount of clutter to a safe level or support the person with their personal care which avoids pressure areas or infection.

If a professional is able to build a rapport with the person then there may be better engagement on managing the risks.

Capacity and advocacy

When identifying risks, one must take into consideration the mental capacity for decision making of person/s at risk. Capacity issues highlight the level of control the vulnerable adult may have over his/her current situation and his/her ability to make decisions relating to taking risks and accepting support that might reduce the risks.

If the person is found not to have capacity and a best interest decision is required in regards to their accommodation, one must ensure that the vulnerable person’s right to advocacy is upheld. Where the vulnerable person is not represented or their family/carer may not be acting in their best interests, an IMCA must be instructed to act as the advocate for the vulnerable adult.

* The risk assessment is not a definite science, it is a decision making support tool and the risk score can change over any period of time or with different intervention*

Clutter Rating

Appendix 3

RBKC Hoarding Self-neglect Panel Agenda

1. Introductions

2. Case Presentation

3. Recommended interventions-Roles, Responsibilities and Timescales

4. Date for Review

5. Cost and Responsibility for funding

6. Any other business

APPENDIX 4Please see powers available by various agencies

AGENCY LEGAL POWER AND ACTION CIRCUMSTANCES REQUIRING INTERVENTION

Adult Social Care Care Act 2014

Clause 1 Local authorities will have a general duty, when undertaking adult social care functions with an individual, to promote their well-being.Must have regard to: physical and mental health, emotional well-being and personal dignity 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)

participation in work, education, training or recreation social and economic well-being domestic, family and personal relationships Suitability of living accommodation the individual’s contribution to society

Clause 3 Local authorities must exercise its functions regarding adult social care with a view to ensuring the integration of care and support provision with health provision and health-related provision where it considers that this would, among other things, promote the well-being of adults in its area.

Clause 7 Local authorities can request the co-operations of a relevant partner in regards to specific cases, and vice-versa. The request must be complied with unless it is “incompatible with its own duties” or “would otherwise have an adverse effect on the exercise of its functions”. Written reasons must be given for a decision not to comply with a request.

Councils have a legal duty to assess needs where a concern has been raised about a person’s health and well being.

Clauses 9 and 11 A local authority must assess a person’s needs for care and support unless that person refuses an assessment. But an assessment cannot be refused, and the local authority must carry it out, if the person lacks capacity to refuse and carrying it out would be in their best interest, or the adult is experiencing, or is at risk of, abuse or neglect.

Environmental Health Section 83 Public Health Act 1936 Filthy /Unwholesome premises which are prejudicial to health or verminous.

Service of Notice requiring clearance/cleansing/pest control treatment. No appeal.

Council has powers to enter premises by warrant if reasonable access not given after giving notice. This will be to assess the conditions or carry out works in default. Possible prosecution and Council can recover expenses for works in default.

Where hoarded materials result in filthy, unwholesome or vermin infested premises. This is often where there is a lack of engagement or co-operation of occupier.

There must be likelihood of adverse health effect to occupant or rodents or insects present. There may also be complaints from neighbours which must be investigated by the Council.

Environmental Health Section 79/80 Environmental Protection Act 1990Statutory Nuisances Service of Abatement Notice requiring action to remove nuisance and/or prevent a recurrence.

Appeal against notice possible.

Warrant powers similar to above.

Possible prosecution and Council can recover expenses for works in default.

Injunctive proceedings may be taken.

Council has a legal duty to investigate complaints of statutory nuisance and must take action if nuisance proven.

The premises must be in such a state that they are prejudicial to healthy or a nuisance to neighbours. This may be from condition of the premises, accumulations, deposits or even animals kept in unsanitary conditions.

Intervention often prompted by complaints from neighbours.

For exceptional situations where widespread nuisance to neighbours continues after intervention and usually

after service of notice.Environmental Health Housing Act 2004

Housing hazards such as Domestic Hygiene, Pests and Vermin, Excess Cold, Fire.

Service of Improvement or Hazard Awareness Notice usually on owner of premises requiring building defects being rectified to reduce the hazards. Council can charge for costs incurred serving notices.Appeal provisions. Possible prosecution and Council can recover expenses for works in default

Relates to possible health and safety effects on occupier. Hoarding can lead to fire hazards from accumulated materials.

Due to hoarding, there may be a lack of repair/maintenance of property leading to other health effects on occupier such as lack of heating (excess cold) or washing/sanitary facilities.Usually used in private rented dwellings.

Environmental Health Prevention of Damage by Pests Act 1949 (section 4)

Service of Notice to keep land free from rats or mice No warrant powersPossible prosecution and Council can recover expenses for works in default

Powers usually used for accumulations of rubbish or items attracting/ harbouring rodents on private land. This is usually used for external parts of property e.g. gardens.

Metropolitan police Power of Entry – (S17 of Police and Criminal Evidence Act)

Person inside the property is not responding to outside contact and there is evidence of danger.

Information that someone was inside the premises was ill or injured and the Police would need to gain entry to save life and limb

London Fire Brigade Prohibition or Restriction of use (Regulatory Reform (Fire Safety)Order 2005)

The fire brigade can serve a prohibition or restriction notice to an occupier which will take immediate effect. In some circumstances this can apply to domestic premises including single private dwellings where the appropriate criteria of risk to relevant persons apply.

If a premises involves such risk to persons so serious that the use of the premises ought to be Prohibited or Restricted notice can beserved on the responsible person (owner/occupier).

Animal Welfare agenciessuch as RSPCA/Localauthority e.g.EnvironmentalHealth/DEFRA

Animal Welfare Act 2006Offences (Improvement notice)

Education for owner a preferred initial step, Improvement notice issued and monitored, If not complied can lead to a fine or imprisonment

Cases of Animal mistreatment/ neglect.The Act makes it not only against the law to be cruel to an animal, but that a person must ensure that the welfare needs of the animals are met.See also:

http://www.defra.gov.uk/wildlife ‐ pets/ .Local Authority/ Adult Social Care

National Assistance Act 1948(Section 47 Power of Removal)

This is the power to remove but not necessarily to resolve so would have to be used in conjunction with other measures. An assessment would have to be carried out regarding the person’s living conditions and their best interest. This would always have to be undertaken by a professional.

Where a person by way of chronic disease, age infirmity or physical incapacity is living in insanitary conditions and is unable to care for themselves. However, this action may be open to challenge under the Human Rights Act 1998 and should only ever be used as an absolute last resort, with justification such as reasonable belief it is to prevent death.

Mental Health Mental Health Act 1983Section 135(1)

Provides for a police officer to enter a private premises, if need be by force, to search for and, if though fit, remove a person to a place of safety if certain grounds are met.The police officer must be accompanied by an Approved Mental Health Professional (AMHP) and a doctor.

In general practice an AMHP would apply for the 135(1) warrant at the appropriate Magistrates Court.

Section 135(1) permits removal to a place of safety for up to 72 hours with a view to the making of an application under the provisions of the Mental Health Act or other arrangements for the persons care or treatment. NB. Place of Safety is usually the mental health unit, but can be the Emergency Department of a general hospital, or anywhere willing to act as such.

Evidence must be laid before a magistrate by an AMHP that there is reasonable cause to believe that a person Is suffering from mental disorder,

and is being Ill treated, or Neglected, or Being kept other than under proper

control, or If living alone is unable to care for

selfAnd that the action is a proportionate response to the risks involved

Mental Health Section 4 of the Mental Health Act 1983. Admission for assessment in cases of emergency.

In any case of ‘urgent necessity’.

The criteria for detention mirror Section 2 (below) but Section 4 may be used in cases of emergency where it has not been possible to secure an

In any case of ‘urgent necessity’ an application may be made by an AMHP or Nearest Relative and founded on one medical recommendation made by, if practicable, a doctor with previous knowledge of the person or a Section 12 approved doctor.

assessment by a second doctor.

This section expires after 72 hours unless a second medical recommendation is received within this time period.

Mental health Section 2 of the Mental Health Act 1983.

Admission to hospital for assessment. Application can be made by an AMHP or Nearest Relative based on 2 medical recommendations in the prescribed form by 2 independent doctors.

The person may be detained for a period of up to 28 days.

The following grounds must be met:

The person is suffering from a mental disorder of a nature or degree which warrants the detention of that person in hospital for assessment (or assessment followed by treatment).

That the person ought to be detained in the interests of his/her own health or safety or with the view to the protection of others.

Mental Health Section 3 of the Mental Health Act 1983

Admission to hospital for treatment. Application can be made by an AMHP or Nearest Relative and is based on 2 medical recommendations in the prescribed form by 2 independent doctors.

The person may be detained initially for a period of up to 6 months for the purposes of treatment.

The following grounds must be met:

That the person is suffering from a mental disorder of a nature or degree which makes it appropriate for him/her to receive medical treatment in a hospital.

That it is necessary for the health or safety of the person or for the protection of others that he/she should receive this treatment and it cannot be provided unless the person is detained under this section. That appropriate treatment is available for him/her.

APPENDIX 5Useful Resources

Pan London Hoarding Task Force.

Task force members are representatives from housing associations, other registered providers, representatives from several local authorities, London Fire Brigade, health and other sector-related practitioners. 

The task force promotes best practice, develops opportunities to network and work collaboratively, shares experiences and resources, benchmarks services and helps everyone work in a more co-ordinated way within London.

For more info go to http://www.peabody.org.uk/news/pan-london-hoarding-taskforce-is-launched.aspx