Self NeglectRefusal of Services

Michael WhartonSafeguarding Adults Board Business Manager

Sources of Information

Sheffield Serious Case Review.

SCIE – Self Neglect Research.

Community Care Online Assessment Tool.

Sheffield SCR

• The full executive summary of the Serious Case Review is available on the Sheffield Council Internet site.

• Ann was a single mother when she arrived in Sheffield from the south of England in 2001.

• She presented as a vulnerable adult when, as a wheelchair user with a young child in junior school, she sought help from social care services.

• Ann had trained as a nurse but ceased working in 1992 as a result of her disability.

Sheffield SCR

• Together with her physical disabilities. Ann believed she suffered from Dystonia.

• Although the causes of Dystonia are poorly understood, there was a growing sense among the organisations supporting Ann during her residence in Sheffield that her condition co-existed with mental health problems.

• Whenever she was approached she believed this would cause her arm to move to her throat and that the pressure from this movement could asphyxiate her.

• Further, Ann asserted that if she was approached from the left her body spontaneously [contracted] into a foetal position and that her body [could not] cope with the approach of two people.

Sheffield SCR

• Ann drank through a straw and used a mouth-stick to operate her intercom, mobile phone and computer. Although Ann spent much of her days on the internet, at the end of her life she lived in darkness, in a corner of a single room in her home, lying in her bodily fluids. She lay horizontally over a broken and sodden wheelchair, an arm of which had collapsed, with her feet resting on the step of a ladder propped alongside her.

• When Ann died her Body Mass Index was below 12. A BMI of 13 is considered the point at which risk of death from starvation is significant.

• How did it get to this state.

Sheffield SCR

• Ann’s first year in Sheffield gave indications of behaviour which was to become familiar for the remainder of her life: she upset the care providers who then withdrew; she withheld information, she challenged the judgements of health and social care professionals; and she could not accept that her young child’s home life was wanting.

• 2002, Ann asserted that she would rather have no care at all rather than two carers. As Ann would not compromise, or even engage with the health and safety consequences for those supporting her, the result was protracted stalemate.

Sheffield SCR

• By 2004, the pattern of refusing professionals access to her home was established. Ann became more specific about who was permitted to assist her i.e. only qualified staff, trained by one of two named nurses. The conditions within her home were deteriorating and the house was fumigated.

• 2005 Ann discontinued her contact with the Outpatients Department as the consultant declined to comply with her demand to have her catheter changed by the same nurse. Ann’s lack of cooperation with community nurses had become entrenched and they withdrew. Ann’s PEG had blocked and she would not allow them to replace it. Ann sought a judicial review of her care. By the year end Ann was communicating via her solicitor.

Sheffield SCR

• 2006 and 2007, Ann received neither community nursing nor social care services. However, in this period she had four home visits from her GP and six telephone consultations (and 11 failed telephone contacts) with her GP.

• 2008, Ann’s health had declined and the legal challenges she instigated had not delivered the outcomes she desired. Irrespective of nursing and social work efforts to re-engage with Ann, she persisted in excluding named individuals from her home.

Sheffield SCR

• Ann absorbed a great deal of management and practitioner time. • The physical disability service reported 105 interventions.• The community nursing service reported almost 500 interventions (including

30 plus occasions when Ann declined to allow nurses to her home).• Adult social care almost 300 interventions.• Her medical records filled a whole drawer of a filing cabinet in the GP

practice.

• Professionals experience of Ann was that she would instruct solicitors and not co-operate e.g. refusing to accept ‘phone calls; refusing access to her home; blaming others for difficulties and failures; and her lost voice.

Sheffield SCR

• Ann was regarded as a woman with capacity and her decision to refuse support was respected. In 2003, a psychiatrist established that Ann had capacity and in the same year, an anaesthetist came to the conclusion that Ann was competent to refuse a naso-gastric tube insertion. In 2005 her GP confirmed that Ann was neither depressed nor cognitively impaired and in July 2008 professionals agreed that Ann had capacity.

• However, Ann’s unyielding position, that she should be supported by a particular person only (irrespective of moving and handling concerns) and that only named nurses could train the people supporting her, ultimately resulted in self neglect and in turn, her death.

• Services were faced with a difficult challenge: ‘Because of our duty of care to you, we have sought to take your wishes into account. However, we can only meet you so far and we cannot, ultimately, compromise the health and safety of our staff. It is not reasonable for you to turn away or refuse entry to the staff we employ.

Sheffield SCR

• Consideration of Statutory options.

• Removal from home s.47 National Assistance Act 1948.

• Powers of entry under the Environmental Protection Act 1990 and the Public Health Act 1936 to address conditions prejudicial to health.

• Ann was living in insanitary conditions Although s.47 allows removal from a person’s home, it does not permit any further action to be taken, such as treating a person’s physical condition.

• Human Rights Act may mitigate against use of this power.

Sheffield SCR• Eviction - Ann was possibly in breach of the implied terms of her tenancy

agreement i.e. she did not take proper care of her property.

• Ann might have been declared intentionally homeless under the Homeless Persons Act 1977.

• Eviction may have been disputed by reference to the Disability Discrimination Act 1995.

• Staff who were permitted entry wore barrier clothing. The tenancy was fumigated in 2004. For protracted periods Ann refused to allow staff to remove human waste and clean her.

• Ann had substantial support needs. It is unlikely that accessible accommodation could have been secured at short notice.

• Re-housing was likely to have resulted in further evictions.

Sheffield SCR

• Compulsory admission into hospital under the Mental Health Act 1983 as amended by the Mental Act 2007.

• Any disorder or disability of the mind.

• Ann’s continuing patterns of behaviour might possibly have amounted to a mental disorder under the Act. (Although Ann was seen by a psychiatrist on many occasions she was not given a formal mental health diagnosis).

• What short term or long term solutions would have resulted from assessment and/ or treatment? However, a psychiatric unit would have identified overwhelmingly physical health problems.

Sheffield SCR

• Guardianship.

• Under s.7 of the Mental Health Act 1983.

• Ann’s continuing pattern of behaviour might possibly have amounted to a mental disorder under s.7.

• What short term or long term solutions would have resulted, given the limited powers under guardianship provisions?

• Use of this power would not address the underlying problems and there would have been no co-operation from Ann.

Sheffield SCR

• Declaration of Mental Incapacity.

• The Mental Capacity Act 2005 enshrines the presumption of capacity. Incapacity must therefore be proved. Decisions and interventions in respect of people lacking capacity must be in their ‘best interests’.

• Although Ann required a great deal of personal care she decided to discontinue the support offered by health and social care services.

• As Ann’s death approached a declaration of incapacity, if justified, might have resulted in interventions which might have rendered the circumstances of her death less bleak (Prevented her death).

Sheffield SCR – Conclusions

• Ann was an extraordinarily difficult woman to support. She imposed conditions on clinical, nursing and caring interventions and conditions on meetings via solicitors.

• She appears to have become trapped in this self-defeating behaviour. She favoured sitting in bodily waste over being supported by staff she did not want.

• She required a loyalty from individual professionals which ignored their professional boundaries and safety. Although she struck no physical blows, professionals reported that Ann left them reeling.

• The Coroner accepted that “Social Services, the District Nursing Service, the General Practitioner and the PCT were left in an impossible position. They could not provide care in the manner that Ann felt she needed.

Sheffield SCR Recommendations

• 1. The Safeguarding Board should ensure that Ann’s remaining family are given an opportunity to discuss the Serious Case Review.

• 2. The decision-making abilities of individuals who regularly refuse services should be scrutinised, along with their mental capacity. Specific decisions should be examined by health and social care professionals within an agreed timescale.

• 3. The professionals involved in the support of patients and clients who challenge and create conflict, should receive frequent and professionally facilitated support if their efforts are to be sustained.

• 4. The professionals involved in Ann’s support should be offered the opportunity to debrief and reflect on the lessons arising from this review.

Sheffield SCR Recommendations

• 5. NHS Sheffield should promote their “Safeguarding Children and Adults Protocol for General Practitioners” as this signposts GPs into local authority safeguarding procedures. However, the Protocol should include advice about documenting mental capacity. Further, NHS Sheffield should ensure that support for primary care personnel is available, most particularly regarding the assessment of mental capacity.

• 6. Review the information sharing agreements in place as well as the training that supports these.

• 7. The relevant agencies should identify a senior manager to lead the real-time management of risk in working with people who refuse services.

• 8. This Serious Case Review should be shared with the Law Commission’s project team addressing adult social care.

• 9. As a society we need to consider and subsequently determine what kind of actions we want health and social care personnel to undertake when dealing with complex individuals who self-neglect.

SCIE – Self Neglect Research

• SCIE organised a Professionals focus group and Workshop to consider self neglect cases. The research is available and should be read in full. This is a synopsis of the results.

• They identified the following issues:• Values • Assessment • Thresholds • Law • Real social work • Recording

Values

• Focus group participants struggled with how practitioners should intervene in cases of self-neglect. Sometimes the discussion was framed explicitly in the context of values, ethics and capacity. This might be to emphasise that self-neglect should not be included within safeguarding procedures or to limit the nature of the intervention because of human rights preoccupations when individuals have capacity.

• ‘I value the fact that people have got the right to make their own decisions, including taking risk or live in a way that I wouldn’t. So that is a fundamental part of the value system that really underpins safeguarding for me.’

Assessment

• Sensitive and comprehensive assessment is emphasised, assisted where appropriate by effective screening tools that assist clinicians in identifying capabilities and risks; equally relationships and professional judgement remain valued as effective means of conducting assessments. Early intervention, before self-neglectful behaviour becomes entrenched, is seen as important.

• The literature endorses the value of interventions to support the routine daily living tasks; there is less evidence of the effectiveness of psychological interventions.

• Building good relationships is seen as key to maintaining the kind of contact that can enable interventions to be accepted with time, and decision-making capacity to be monitored.

Assessment

• Discussion often returned to cases where individuals refuse assistance, despite the risks involved, and where outside commentators, especially in the media, might argue that something should have been done.

• The key here was felt to be documentation of how the risks had been evaluated and how the values of independence and self-determination had been weighed against impact on self and others.

• Where safeguarding procedures were not used to discuss how to respond to a person who withdraws, participants pointed to MARAC as an example of a multi-agency process where difficult dilemmas surrounding rights and risks could be worked through.

• However, not everyone necessarily felt totally comfortable with this approach because of the value position it reflected:

Thresholds

• The operation of FACS criteria and the restriction of preventative services were identified as meaning that someone with care needs might not receive assistance until their situation had deteriorated to a point of self-neglect. The operation of thresholds could also make it difficult to identify cases that could then be processed through the MARAC type processes described earlier.

• “You may have call centre staff who have minutes to do their screening and could quite likely be sending it onto the wrong teams. If they don’t meet FACS they then end up getting signposted or navigated to, sometimes appropriate but not always appropriate, services. I think a lot of people do get lost ….. and there was a real lack of understanding about what constituted self-neglect.”

Law

• Capacity assessment is crucial – We are considering Persons with Capacity• Some local authorities had considered the use of Section 47 of the National

Assistance Act 1948, but had backed away from seeking to implement its provisions.

• No cases were found where Section 47 had actually been used although in both the focus group and workshops participants shared cases where Coroners had criticised local authorities for not using Section 47.

• Examples were given of where people were living in very self-neglectful situations but had been judged to have had capacity, and professionals had concluded that they had little legal authority to intervene.

• Article 8, rights to private and family life, was usually interpreted as restricting this type of intervention.

Law

• The rights to a private and family life, are qualified by the interface with Article 2, the right to life.

• Public authorities must have a process whereby they can be shown to have given Section 47 due regard in any relevant decision-making process. One view expressed was that Section 47 was being avoided because of concerns rooted in ethics about the provision. Another was that its interface with the provisions of the Mental Capacity Act 2005 was unclear and that the framework in the 2005 Act might override the 1948 provisions for those who lack capacity.

• The draft Care and Support Bill proposes to abolish Section 47 (Maybe law in 2015)

• There is a clear requirement to show what has been considered and why it

was rejected.

Law

• Intervention was possible where other people’s wellbeing was affected. For example, one workshop participant noted that environmental health officers would intervene if vermin were found.

• One person’s human rights might have to be balanced in terms of the legality and ethics of an intervention with another’s self-same rights.

Recording

• Focus group participants stressed the importance of recording, especially in cases where an individual had refused assistance.

• Recording was also important so that authorities could demonstrate that a proper process had been followed and that they had acted reasonably and proportionately.

• In situations where the media were seen to be wanting to apportion blame for a death, believing that some agency should have intervened, good practice suggested having an audit trail for what options were considered in a case.

• For Individuals who had decision-making capacity, there had to be a process for capturing the evidence of how agencies had properly assessed that capacity, including someone’s understanding of the potential repercussions of their decisions. This was seen as “defensible decision making”.

Support Tools

• Online Assessment Tool • http://www.communitycare.co.uk/static-pages/articles/guide-to-self-neglect-

assessments/

• Adult Services Social care Institute For Excellence (SCIE) Report 46 Self Neglect and adult safeguarding: findings from research.

Summary

• People have the right to make their own decisions.

• Where these decisions give rise for concerns regarding self neglect / safety consider:

• The Mental Health Act.

• The Mental Capacity Act.

• Use the on line Community Care tool.

• This will refer you to relevant legislation such as Sec 47 NAA 1948, but with the restrictions on this legislation and the need to consult with the legal department.

• Where a vulnerable person has mental capacity but may be in a coercive relationship constraining or influencing their decisions legal advice should be sought to consider if the inherent jurisdiction principles should be applied.

Summary

• Discuss the case with your Manager.

• Ensure as far as possible an assessment takes place.

• Ensure you do a risk assessment and discuss the risks with the Service User.

• Consider Informing the relevant GP of the concerns. This would be part of consulting a wider reference group.

Summary

• Consider taking the case to the relevant local integrated network meeting.

• The local network can act as the multi agency forum where other professionals are involved in the considerations regarding the best approach to help the Service User.

• Consider the use of the safeguarding adults process. The No Secrets guidance does not recognise Self Neglect as a category of abuse, however, it does open up access to the multi agency forum which could act as the wider reference group which it is recommended these cases are considered in.

Summary

• At every step and stage in the process record the situation, what you have considered, who you have collaborated with and what decisions have been reached. This may appear a time consuming process, but it is simply a case of putting your activity notes into a framework of considerations and why you have chosen a particular course of action.

• Remember - The media and possibly the Coroner will be looking at who should be held to account if a persons self neglect results in death.

• Defensible decision making is about making sure that the reasons for decisions, as well as the decision itself, have been thought through and can be explained.