5.5 Appendix 5 – Guidance to support people who self-neglect
A failure to engage with individuals 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 wellbeing. It can also impact on the individual’s family and local community.
Public authorities, as defined in 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, authorities are expected to act within the powers granted to them. They are also to act fairly and rationally in the exercise of those powers.
Aim of this guidance
The aim of this guidance is to prevent death and serious injury to self-neglecting individuals by ensuring:
- Individuals who are neglecting are empowered as far as possible, to understand the implications of their actions.
- A shared, multi-agency understanding and recognition of the issues involved in working with individuals who self-neglect.
- Effective multi-agency working and practice.
- Appropriate prioritisation.
- Agencies and organisations uphold their duties of care.
This is achieved through:
- Promoting a person-centred approach which supports the right of the individual to be treated with respect and dignity, to be in control of, and as far as possible, to lead an independent life.
- Aiding recognition of situations of self-neglect.
- Increasing knowledge and awareness of the different powers and duties provided by legislation and their relevance to the particular situation and individuals’ needs. This includes the extent and limitations of the ‘duty of care’ of professionals.
- Promoting adherence to a standard of reasonable care whilst carrying out duties required within a professional role, in order to avoid foreseeable harm.
- Promoting a proportionate approach to risk assessment and management.
- Clarifying different agency and practitioner responsibilities and in so doing, promoting transparency, accountability, evidence of decision-making processes, and actions taken.
- Promoting an appropriate level of intervention.
Key principles (from government policy on adult safeguarding) to guide operational practice across Sussex:
- Empowerment Presumption of person-led decisions and informed consent.
- Protection Support and representation for those in greatest need.
- Prevention It is better to take action before harm occurs.
- Proportionality Proportionate and least intrusive response appropriate to the risk presented.
- Partnership Local solutions through agencies working with their communities. Communities have a part to play in preventing, detecting and reporting neglect and abuse.
- Accountability Accountability and transparency in delivering safeguarding.
Interventions need to take an empowering approach. Building a positive relationship with individuals who self-neglect is critical to achieving change for them, and in ensuring their safety and protection.
This guidance will be referred to where an adult is believed to be:
- not engaging with a network of support,
- there is either perceived, or actual risk of harm, and
- where the person is over 18 years of age.
An individual may be considered as self-neglecting and therefore maybe at risk of harm where they are:
- Either unable, or unwilling to provide adequate care for themselves.
- Unable to obtain necessary care to meet their needs.
- Unable to make reasonable or informed decisions because of their state of mental health, or because they have a learning disability or an acquired brain injury.
- Unable to protect themselves adequately against potential exploitation or abuse.
- Refusing essential support without which their health and safety needs cannot be met, and the individual does not have the insight to recognise this.
Risk factors associated with self-neglect:
- Living in very unclean, sometimes verminous circumstances, such as living with a toilet completely blocked with faeces.
- Neglecting household maintenance, and therefore creating hazards.
- Portraying eccentric behaviour / lifestyles, such as obsessive hoarding.
- Poor diet and nutrition. For example, evidenced by little or no fresh food in the fridge, or what is there, being mouldy.
- Declining or refusing prescribed medication and / or other community healthcare support.
- Refusing to allow access to health and / or social care staff in relation to personal hygiene and care.
- Refusing to allow access to other organisations with an interest in the property. For example, staff working for utility companies (water, gas, electricity).
- Being unwilling to attend external appointments with professional staff, whether social care, health or other organisations (such as housing).
- Poor personal hygiene, poor healing / sores, long toe nails.
- Failure to take medication.
This list is not definite or exhaustive.
Where the individual refuses to participate or to give access, information obtained from a range of other sources may ‘hold the key’ to achieving access or to determining areas of risk.
The assessment will be informed by the views of carers and / or relatives as well as by the views of individual themselves, wherever possible and practicable.
The scope of these procedures does not include issues of risk associated with deliberate self-harm; where self-harm appears to have occurred due to an act of neglect or inaction by another individual or service. Consideration will be given as to whether the Sussex Safeguarding Adults Procedures would apply.
The following definitions are relevant to these Procedures:
‘Self-neglect’ The inability (intentional or unintentional) to maintain a socially and culturally accepted standard of self-care with the potential for serious consequences to the health and well-being of the individual and potentially to their community.
‘Significant risk’ Where there are indicators that change is likely to occur in levels of risk in the short to medium term, appropriate action should be taken or planned.
Indicators of significant risk could include:
- History of crisis incidents with life threatening consequence.
- High risk to others.
- High level of multi-agency referrals received.
- Risk of domestic violence.
- Fluctuating capacity; history of safeguarding concerns / exploitation.
- Financial hardship; tenancy / home security risk.
- Likely fire risks.
- Public order issues; antisocial behaviour / hate crime / offences linked to petty crime.
- Unpredictable or chronic health conditions.
- Significant substance misuse, self harm.
- Network presents high risk factors.
- Environment presents high risks.
- History of chaotic lifestyle; substance misuse issues.
Identifying and working with individuals who self-neglect
1. Identify self-neglecting individual
- Individual identified as self neglecting, and
- appears to be at significant risk, and
- is not engaging with support, or
- a number of organisations are aware of the situation and feel risk has reached a significant point.
Actions to consider:
- Contact emergency services if required.
- Any other immediate actions required to minimise risk to individual or others.
Raise a safeguarding concern if it is felt that the person has needs for care and support and is experiencing, or at risk of abuse or neglect; and as a result of those care and support needs is unable to protect themselves from either the risk of, or the experience of abuse or neglect.
2. Advise lead coordinating agency / lead agency and engage other appropriate agencies
Who is the lead coordinating agency?
This is the agency best placed to coordinate this process at this point. This could be because:
- that agency is already involved with the individual,
- that agency has a duty of care towards them because of their needs,
- that agency holds significant information relating to the individual,
- the individual has shown a likelihood to engage with them best in the past, and / or
- the individual’s main needs appear to relate to the service provided by that agency.
Staff will be particularly conscious that:
- it is likely that these individuals will not necessarily clearly meet the criteria for any one or a number of agencies or organisations; and / or
- organisations may have previous experience of attempting to engage with these individuals with limited success.
Both the above should be identified as risk indicators that will prompt action under the self neglect procedure.
3. Other agencies / organisations engage with the process
Self-neglect work has been agreed as a multi-agency priority and there is an expectation that:
- all partner agencies will engage when this is requested by the lead agency as appropriate or required, and
- where an agency is the lead agency, they take responsibility for coordinating multi-agency partnership working.
Where partner agencies do not follow their responsibilities
Where any partner agencies or professionals (lead or otherwise) believe other agencies are not taking on their responsibility appropriately, this concern will be escalated to the senior manager of that agency. This would ordinarily be the senior manager responsible for the operational team required to lead or engage the process.
4. Lead agency coordinates information gathering and determines most appropriate actions to progress
Information gathered at this stage is to inform:
- Decision making regarding whether further multi-agency information sharing and planning is required.
- Risk assessment and initial actions / agencies that may need to be involved.
Principles for information gathering
The central principle throughout this process will be to make every effort to maximise the engagement of the individual, and to gather information from all relevant sources.
Information gathering will aim to build understanding of:
- previous engagement and success factors for the individual,
- approaches that appeared to disengage the individual,
- the individual’s perspective, and
- insight into the individual’s wishes.
Balancing individuals’ rights and agencies’ duties and responsibilities
All individuals have the right to take risks and to live their life as they choose. These rights will be respected and weighed when considering duties and responsibilities towards them. They will not be overridden, other than where it is clear that the consequence would be seriously detrimental to their, or another person’s health and well being and where it is lawful to do so.
Staff will also consider the rights:
- To privacy and information sharing under the Data Protection Act, weighed against the level of risk, and
- of others who may be affected.
Effective information sharing and communication
When working with individuals who may be reluctant to communicate, the risk for miscommunication between agencies is greater than usual. It is important to ensure that all relevant information is available to those who undertake any assessments.
Create a chronology that includes all relevant previous actions and organisations / individuals involved. This is an important aspect of ensuring the information gathering and analysis process is effective.
To deal with different aspects of the concern, staff will consider making other relevant referrals such as:
- Adult safeguarding.
- Criminal investigation.
- Child protection.
- Environmental Health.
- Community Safety.
5. Multi-agency meetings
Where an adult has been identified as potentially self-neglecting, is refusing support, and in doing so is placing themselves or others at risk of significant harm, agencies will discuss their concerns together.
Practice experience and research shows that sharing strategic approaches across agencies involved assists in informing an agreed action plan. This is often best done at a formal multi-agency case planning meeting. The risk(s) of non-intervention can be assessed and understood by all involved.
A multi-agency planning meeting, with a clear agenda for discussion, will be convened within five working days from the initial concerns being raised.
Principles for multi-agency planning meeting
- The lead agency is responsible for convening this meeting and making arrangements such as venue and minute taking.
- The lead agency will make arrangements to involve the individual concerned. Wherever possible the individual should be fully involved, and attend the meeting. However, it is acknowledged that in the majority of situations where this procedure has progressed to this point it is likely that the ability to engage, involve and communicate with the individual may be limited.
At the multi-agency meeting a decision will be made as to how best to include him / her in future. If they do not wish to attend, it will be agreed how to feed their views into the meeting. Any decisions taken will clearly be recorded and communicated back to the individual.
Note: The relationship professionals have with the individual will be an important vehicle for achieving change.
Terminology used, and the approach taken will be critical in building trust and a level of acceptance.
Learning shows the importance of bringing a fresh perspective by also including appropriately skilled and experienced people who have not previously been involved in working with this individual or familiar with the information.
- The multi-agency meeting will be formally chaired and recorded so that responsibilities thereafter for implementing action plans are clearly accepted and understood by named individuals.
- It is important that all relevant professionals attend such meetings to fully understand the legal duties, resolve ethical dilemmas and to establish individual responsibility within plans made.
- A fully coordinated response will be essential to achieving a satisfactory outcome and ensure there is clear understanding of the agreed way forward.
- Where there is disagreement this should be discussed until agreement is reached and if necessary line management consulted in order to resolve the situation.
- Participants need to come prepared with required information.
Each agency approached will take responsibility for making any contacts or taking any actions considered necessary before the planning meeting.
Purpose of the multi-agency planning meeting
- The individual’s view and wishes as far as known.
- Information, actions and current risks.
- The ongoing lead professional / agency who will coordinate this work.
- Co-ordinate information sharing and evaluation of relevant information to inform the most effective approaches.
Reasons for convening a meeting
- Work has not reduced the level of risk. Significant risk remains.
- It has not been possible to coordinate a multi-agency approach through work undertaken until this point.
- The level of risk requires formal information sharing and recording of the agreed multi-agency plan.
Timescales for achieving actions set at the multi-agency meeting will be specified within the formal written record of the meeting. This will include timescales for completing any outstanding or more specialist assessments. A date will also need to be set for a review meeting so that any further specialist assessments can be considered and any revised actions agreed.
Each individual’s situation is unique.
Professional judgement will dictate the significance of different issues and approaches included, along with how and when these may most effectively be considered and applied.
This guidance is not a substitute for agencies seeking legal advice where this is required.
Legal advice will be obtained and a legal representative should be invited to the multi-agency planning meetings to hear the circumstances of the case and discuss relevant legal options that will:
- Protect the person’s rights.
- Meet professional duty of care.
- Which may lead to resolving the situation.
Outcome of the multi-agency meeting
- Updated support plan and risk assessment.
- Actions – including contingency plans and escalation process.
- Monitoring and review arrangements.
- Communication with individual / other key people involved.
- Agreement regarding the ongoing lead agency.
Appropriate written communication will be forwarded to the individual concerned, irrespective of the level of their involvement to date. This communication will include:
- A written record setting out what support has been offered and / or is available, and why.
- The written record will include reasons if the individual refused to accept any intervention.
- The correspondence will make clear that, should the individual change their mind about the need for support, then contacting the relevant agency at any time in the future will trigger a re-assessment.
- Careful consideration will be given as to how this written record will be given, and where possible explained, to the individual.
6. Comprehensive assessment’s including of risk
Following the formal multi-agency planning meeting, assessment material will be brought together in one place and each professional involved will have an understanding of the links between their own involvement, that of others. The impact the various care needs have on the individual’s functioning also needs to be understood and shared.
Specialist input may be required to clarify certain aspects of the individual’s functioning and risk. This will be arranged, and the findings considered.
Key components of the comprehensive assessment of neglect will include the following elements:
- A detailed social and medical history.
- Activities of daily living.
- Instrumental activities of daily living (eg. ability to use the phone, shopping, food preparation, housekeeping, laundry, mode of transport, responsibility for own medication, ability o handle finances).
- Environmental assessment.
- Cognitive assessment.
- A description of the self-neglect.
- A historical perspective of the situation.
- A physical examination – undertaken by a nurse or a medical practitioner.
- The individual’s own narrative on their situation and needs.
- The willingness of the individual to accept support.
- The views of family members, healthcare professionals and other people in the individual’s network.
Note: Record fully when and where the individual has been assessed as having mental capacity to understand the consequences of their actions.
Explore the risks of not intervening and ensure this is documented.
7. Outcomes determined following a multi-agency meeting and assessment of risk
These will be:
- Risk addressed ongoing monitoring agreements; or
- Risk remains due to individual continuing to place themselves at significant risk, and contingency measures not having addressed this – escalation and agreed ongoing monitoring and review arrangements. Legal advisors will be involved. Escalation to senior managers with clearly outlined outcomes and areas of focus that this is designed to address.
If risk remains due to refusal by professionals / third parties to engage resulting in neglect of the individual, consideration will be given to raising a safeguarding alert on the grounds of neglect where professionals and third parties (with established responsibility for an adult’s care) either:
- do not engage with multi-agency planning; or
- seek to terminate their involvement prematurely (and this will pose a risk / harm to the individual).
8. Significant risk remains – Multi-agency review meeting
Having established an alternative / holistic support plan this will be reintroduced to the individual by the person / agency most likely to succeed. If the support plan is still rejected, the meeting will reconvene to discuss a review plan.
Note: The case will not be closed because the person is refusing to accept the support plan. Legal advice will be taken if required.
The review is an opportunity to revisit the original assessment, particularly in relation to:
- current functioning,
- risk assessment, and
- known or potential rates of improvement or deterioration in:
- the individual,
- their environment, or
- in the capabilities of their support system.
Decision specific mental capacity assessments will have been reviewed and are shared at the meeting. Discussion will need to focus upon contingency planning based upon risk.
It may be decided to continue providing opportunities for the individual to accept support and to monitor the situation. Clear timescales will be set for providing opportunities and for monitoring.
Where possible, indicators that risks may be increasing will be identified that will trigger agreed responses from agencies, organisations or people involved in a proactive and timely way.
There will be multi-agency agreement to the timescales set according to the circumstances of the case.
The chair of the multi-agency review will ensure clarity is brought to timescales for implementing contingency plans, so that where there is legal and professional remedy to do so, risk is responded to and harm is prevented.
All relevant professionals will attend the multi-agency review so that:
- information is shared;
- contingency planning is fully discussed; and
- inter-agency ownership of the plans is achieved.
A co-ordinated and planned response is essential to the achievement of success where a complexity of care needs impacts upon the person and upon professional responsibilities.
It is important to ensure an objective and fresh a perspective is maintained as far as possible throughout this process. Consider the following approaches:
- Including people with relevant skills and experience who have not previously been involved,
- Ensure chronologies are up to date with multi-agency information and analysed as part of reviewed risk assessments and support planning, and
- Whether escalation of some or all issues to more senior officers may assist or provide any benefit.
A further meeting date will be set at each multi-agency review until there is agreement the situation has become stable and the risk of harm has reduced to an agreed acceptable level.
Where agencies are unable to implement support or reduce risk significantly, the reasons for this will be fully recorded and maintained on the individual’s file, with a full record of the efforts and actions taken.
The individual, carer or advocate will be fully informed of the services offered and the reasons why the services were not implemented. The risks must be shared with the person to ensure they are fully aware of the consequences of their decisions.
Respect for the wishes of the person does not mean passive compliance – the consequences of continuing risk should be explained and explored with the person.
There is a need to make clear that the person can contact the relevant agency at any time in the future for services.
In cases of ongoing significant risk arrangements should be made for monitoring and, where appropriate, making proactive contact to ensure that the person’s needs, risks and rights are fully considered in the event of any changed circumstances.
9. Record keeping
The case record will include a summary record of the efforts and actions taken by all other agencies involved. Individual agencies will also need to keep their own records of their specific involvement.
Accurate records will be maintained that demonstrate adherence to this procedures, and locally agreed case recording policy and procedures.