Self Neglect Refusal of Services Michael Wharton Safeguarding 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.
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