Thematic Safeguarding Adults Review – Self Neglect

1. Introduction

THEMATIC REVIEW REPORT[1]

Suzy Braye and Michael Preston-Shoot
Independent Reviewers

1.1.   During 2019 and 2020, the Torbay and Devon Safeguarding Adults Partnership (TDSAP) received notice of the deaths of six individuals in Devon who had died in circumstances amounting to self-neglect. The Partnership concluded that the circumstances in each case met the mandatory criteria for a Safeguarding Adult Review (SAR)[2]. Such a review must take place where an individual has died (or been seriously harmed), the death or harm is thought to result from abuse or neglect (including self-neglect) and there is cause for concern about how agencies worked together to safeguard the individual. The purpose is to identify learning that can be used to improve future interagency practice and prevent future deaths or serious harm in similar circumstances. Given the presence of self-neglect as a feature in the lives of all six people, the Partnership took the view that a thematic SAR, seeking to identify common learning, would provide a valuable window on any recurring, systemic issues that may require attention within local safeguarding practice.

1.2.   Those whose deaths are being reviewed in this thematic self-neglect SAR are as follows:

Name	Date of death	Post-mortem/inquest findings
AA	December 2018	Post-mortem: death by natural causes, no inquest
BB	December 2019	Inquest: accidental death
CC (Gilda)[3]	January 2020	Post-mortem: death by natural causes, no inquest
DD	May 2020	Inquest: accidental death
EE	July 2020	Coroner awaiting the report of this SAR to inform the inquest
FF	September 2020	Inquest: accidental death

[1] A glossary of acronyms used in this report is provided at Appendix 1.

[2] Section 44 (1-3), Care Act 2014

[3] CC is known as Gilda in this report, at the request of her relative.

2. The Safeguarding Adults Review Process

2.1.  The Partnership sought detailed information from all agencies involved with one or more of the six individuals, and appointed two independent reviewers to lead the review[4]. The reviewers have worked with a Panel of senior members of staff from key agencies across the safeguarding partnership.  Following scrutiny of the available information, the reviewers requested further information and clarification from some agencies and carried out an initial analysis of the common learning themes emerging.

2.2.   These themes were presented at a learning event attended by practitioners, managers and senior leaders from the participating agencies. Participants contributed their experiences of working with self-neglect practice in Torbay and Devon, exploring the factors within and between agencies that can help or hinder best practice.

2.3.   TDSAP contacted all known family members of the six individuals, providing details of the SAR process and inviting their participation. This resulted in requests for family participation in three of the cases. One independent reviewer held telephone discussions with the mother of AA, the daughter of BB and the son of BB. The second reviewer held a telephone discussion with the brother of Gilda. The perspectives of family members have helped inform the reviewers’ understanding of the individuals’ circumstances and have been included within this report. Later in the process, the reviewers invited family members to discuss the key findings and recommendations of the review. Most of the family members who had originally participated in an interview requested such a discussion: in Gilda’s case, relevant extracts of the report were provided to her brother by email, followed by a virtual online meeting; in AA’s case, details were provided verbally in a phone conversation with his mother; in BB’s case, relevant extracts of the report were provided to her son by email, followed by a telephone conversation.

[4] Suzy Braye (Emerita Professor of Social Work at the University of Sussex) and Michael Preston-Shoot (Emeritus Professor of Social Work at the University of Bedfordshire) practice as independent adult safeguarding consultants. They have led the development of the research evidence base on best practice in work with self-neglect and have authored many safeguarding adult reviews. In 2020 they co-led the first national analysis of learning from safeguarding adult reviews, commissioned by the national Care & Health Improvement Programme, funded by the Department of Health & Social Care. Michael is independent chair of two safeguarding adults boards, and co-convenor of the national network of SAB chairs.

3. Terms of Reference

3.1.   The learning is being analysed through the lens of an established evidence base for best practice in self-neglect[5], a summary of which can be found at Appendix 2. The evidence base is derived from research into how positive outcomes are achieved in self-neglect work, and from the consolidated learning from previous SARs. These sources of evidence give insight into what can go wrong in self-neglect and what can go right.  In both tragic outcome cases and positive outcome cases, the factors that influence outcomes reside within a series of domains of the safeguarding system:

A: How practitioners engage with the individual – the domain of direct work

B: How practitioners from different agencies work together – the domain of interagency working

C: How organisational features and systems influence the work that is done – the organisational domain

D: How the Safeguarding Adults Board or Partnership exercises its multiagency leadership role – the domain of governance

E: How national factors such as law, policy and the work of national bodies influence local safeguarding – the domain of policy

3.2.   Thus, this thematic SAR takes a systemic approach to learning: in asking why direct practice unfolded in the way that it did, the answers are often to be found further back within the broader domains that have influenced practice – within organisations, interagency dynamics or governance.

3.3.   The terms of reference for the review were as follows:

a.      To identify common learning themes relating to work with self-neglect in Torbay and Devon arising from six cases in which self-neglect was a feature;

b.      To identify systemic issues across the safeguarding partnership affecting practice in cases of self-neglect, in particular features that help and features that hinder effective work;

c.      To consider how that learning resonates with the evidence base on best practice in self-neglect work, derived from self-neglect SARs nationally and from research into approaches that achieve positive outcomes;

d.      To identify the impacts of Covid-19, given three of the six deaths took place during the early months of the pandemic.

[5] Relevant sources of evidence include:

– Braye, S., Orr, D. and Preston-Shoot, M. (2014) Self-neglect: Building an Evidence-Base for Adult Social Care. London: Social Care Institute for Excellence.

– Preston-Shoot, M. (2019) ‘Self-neglect and safeguarding adult reviews: towards a model of understanding facilitators and barriers to best practice.’ Journal of Adult Protection, 21 (4), 219-234.

– Preston-Shoot, M., Braye, S., Preston, O., Allen, K. and Spreadbury, K. (2020) National SAR Analysis April 2017 – March 2019: Findings for Sector-Led Improvement. London: LGA/ADASS.

4. The Six Individuals

4.1 AA

4.1.1. AA, aged 54 and White British, died in hospital in December 2018 having been found unresponsive in bed at home with signs of seizure, hypothermia, pneumonia and sepsis. He had spent the previous six months in hospital due to his complex and deteriorating health conditions and his self-neglect, with treatments that necessitated re-housing to wheelchair-accessible accommodation. Once this was found he discharged himself from hospital and had been home less than four weeks when he died.

4.1.2. AA had a history of type 2 diabetes mellitus, ischaemic heart disease, pancreatic exocrine insufficiency and peripheral vascular disease. He did not manage his diabetes well and was not compliant with his medication. He also smoked despite knowing the risks to his deteriorating health and declined advice from professionals and family members.

4.1.3. AA’s mother has provided information about his background and personality. He was the eldest of her three children, having a younger sister and younger brother. She describes him as a ‘charmer’ and a ‘handyman’. He had two children, now in their teens, with his partner, but as his health deteriorated there were difficulties managing some of his symptoms, particularly his incontinence, and he and his partner separated. He remained a devoted father, generous with money and gifts for them when he received a benefit back payment just a few weeks before he died.

4.1.4. By 2018 he was living alone, although in regular contact with his ex-partner and two sons, and with his mother in London, who visited every year and with whom he spoke daily. He had a scalp lesion, his left foot was ulcerated and ischaemic, he had severe weight loss and pancreatic insufficiency and was incontinent of faeces, resulting in increasingly insanitary home conditions.  His mother has stated that he could get moody and withdrawn but he never complained that anything was wrong and she describes him as ‘always lovely’ with her. He was reluctant to talk about his health but she knew he was desperate not to go into a care home.

4.1.5. In June 2018, AA’s ex-partner alerted the GP about the level of his self-neglect and the deterioration in his health. Prior to this, the GP had had no concerns regarding his personal care, although had noted frequent non-compliance with his medication for both diabetes and ischaemic heart disease, and continuation of smoking against medical advice. As a result of his ex-partner’s alert, AA was admitted to Royal Devon & Exeter Hospital, where he remained for almost six months, undergoing cranioplasty (for which he was temporarily transferred to Derriford Hospital) to treat skull erosion caused by his scalp lesion and later two amputations (first his toe, then his leg below the knee). During his hospitalization an ulcerated anal lesion believed to be cancerous was found, for which he declined treatment. Throughout he remained non-compliant, at times aggressively so, with all dietary and care advice, and with treatment for his medical conditions. He continued to smoke and eat poorly, and declined investigations, advice and medical reviews. Psychiatric assessment found no evidence of mental illness and concluded, following assessment under the Mental Capacity Act 2005, that he had mental capacity in all areas of decision making, noting he continued to make unwise decisions in the knowledge they might be harmful to him.

4.1.6. He was declared medically fit for discharge on 21st September 2018, with arrangements under discussion with the Complex Hospital Discharge Team. His previous living accommodation was not suitable for his needs following the amputation and he remained on the ward awaiting independent living accommodation. He declined offers of short-term residential placements in the interim, and became low in mood, withdrawn and completely non-compliant. A further assessment of mental capacity related to his refusal to take medication took place in October 2018, again finding he had capacity. In November 2018 he accepted a tenancy, with plans for discharge on 3rd December. The ward referred him for products with which to manage his bowel incontinence and to the North Devon Healthcare NHS Trust Adult Bladder and Bowel Care Service for a pre-discharge assessment. The hospital discharge team attempted to arrange post-discharge care and support.

4.1.7. On 3rd December he failed to return from a day visit to his new flat and was returned to hospital by South Western Ambulance Service (SWASFT) but discharged himself the following day. Police follow-up to his new flat confirmed he was in a “relatively fit state” and would not be returning to hospital. SWASFT visited and confirmed he had capacity to make that decision; his ex-partner also visited and confirmed his non-return. The ward made referrals to the community matron and the Urgent Community Response Team (UCRT).

4.1.8. By 6th December the community matron and an occupational therapist found AA in a poor state and made a referral to Tissue Viability Nursing to assist with foot wounds. The following day the UCRT sought advice from the Safeguarding Team about management of his self-neglect, having noted faeces over the bedroom floor, bedding and clothes, and the flat littered with dirty dishes, cigarette butts and ash. His groin and sacrum were excoriated and his head wound was vulnerable. He refused blood sugars and insulin. The practitioners noted that he had capacity to make lifestyle choices and might disengage from services completely if pressured. The Safeguarding Team advised that a mental capacity assessment should be considered and a referral made to Safeguarding if necessary.

4.1.9. During the following weeks, joint home visits were made almost daily by the community matron and members of the UCRT, who called 3 to 4 times a day to help with personal care and hygiene. All noted the increasingly insanitary conditions resulting from his incontinence, smoking and non-compliance with medication and nursing input. He was unable to manage his faecal incontinence safely and was unwilling to discuss this. The temporary supply of continence products provided by the hospital were uncomfortable and the community service pads did not meet his needs, but he had not yet been assessed by the Bladder and Bowel Care service. He declined GP review and rejected further offers of short-term placement that would allow time to organize the flat and equipment for bowel management.

4.1.10. From 12th the UCRT discharged AA from their care but Rapid Response Team support workers visited him three times a day, providing cover until a long-term care and support package could be sourced. The community matron and community nursing service continued daily visits, liaising with the GP and the safeguarding nurse. AA’s ex-partner also visited him each week and his mother maintained regular phone contact from London. His health and hygiene continued to deteriorate.

4.1.11. On 19th December Devon County Council Adult Social Care (ASC) assessed his ongoing care and support needs[6]. He agreed to a weekly service of 17½ hours personal care (3 visits per day) and 2 hours enabling service for washing and banking. The Rapid Response team remained involved in the interim. The same day the community matron, of the view that his life was at risk from his extreme self-neglect, made a safeguarding referral. They also alerted the Tissue Viability Team, concerned at the deterioration in his foot, and requested GP review of his penis and scrotum excoriation. The situation was described as unsustainable. The safeguarding referral was noted to meet the criteria[7] but did not proceed to an enquiry for reasons given as ‘proportionality’ – although there was evidence of self-neglect with significant risk to health, AA had mental capacity to make care decisions, including unwise ones, and there was a care package in place, with ongoing support and review by health and social care staff to monitor and manage risk. The Community Matron challenged this decision, but it was not changed. His GP, on a visit on 24th December, found no evidence of mental illness or lack of capacity.

4.1.12. On 28th December, AA’s care workers from the Rapid Response Team were unable to rouse him on their 08.55 visit and, believing he was pretending to be asleep, left a note by his bed. Later that morning community nursing and ASC staff found him unrousable and called emergency services. He was admitted to hospital, unconscious and critically unwell; the hospital proceeded with palliative care and AA died later that day without regaining consciousness.

4.1.13. AA’s mother, who attended the hospital from London, has expressed her extreme distress and anger at witnessing the conditions in which her son had been living since his discharge from hospital. She was shocked at the absence of continence products, the apparent lack of arrangements for laundry, the bare mattress on which he was sleeping and the squalor in his home. She considers he was badly neglected in the weeks leading to his death and questions why she was not informed of his circumstances. She is particularly angry that on the morning of the day he died he was mistakenly assumed to be pretending to be asleep and feels strongly that those responsible for leaving him that morning rather than immediately summoning help should be held to account.

4.1.14. The agencies involved in AA’s case were

• Devon County Council Adult Social Care: the Complex Hospital Discharge Team coordinated arrangements for his hospital discharge; the Community Health and Social Care Team assessed his care and support needs – no care had been arranged by the time he died.
• GP surgery: the GP was instrumental in arranging hospital admission in June 2018, and in providing post-discharge follow up in December 2018.
• Guinness Housing provided an assured tenancy in independent living accommodation from 3rd December 2018, with a housing management service and on-site independent living advisers.
• North Devon Healthcare NHS Trust: received a referral from the hospital (November 2018) for Bladder and Bowel Care Service assessment prior to his discharge. An assessment was not carried out before his death.
• Royal Devon & Exeter Foundation Trust: AA was an in-patient at Royal Devon & Exeter Hospital between 26th June and 3rd December 2018, including a brief period at Derriford Hospital (University Hospitals Plymouth NHS Trust) where his cranioplasty was carried out.

[6] Section 9, Care Act 2014
[7] Section 42, Care Act 2014

4.2 BB

4.2.1. BB, aged 79, was found deceased at her home on 9^th December 2019; she had suffered significant burns. It is believed that the previous evening she inadvertently set light to her clothing by either direct contact with a lit gas hob or dropping a lit item she had used to light the hob. The combustion of her clothing engulfed her and led to her death and the fire extinguished itself.

4.2.2. BB’s past medical history included chronic obstructive pulmonary disease (diagnosed 2005), dementia (noted in GP records in 2017), chronic alcohol misuse (initially documented 1995 and formally diagnosed as chronic alcoholism in 2010), detrusor instability and hypothyroidism. She had a daughter quite close by and a son who lived further away, both of whom supported her in differing ways.

4.2.3. Although her alcohol use had been well established for many years, it was in 2017 that its impact on her behaviour, self-care and safety became more apparent, with a series of incidents that brought her to the attention of emergency services and health and social care services. Her home was consistently noted to be in a very poor state, dirty and unhygienic with evidence of poor self-care and difficulties caring for her dog (who later died). There were concerns also about a lack of heating, and her use of a lit gas cooker hob to provide warmth. The Fire & Rescue Service had provided fire safety advice. Devon County Council Adult Social Care (ASC) arranged a short-term care home placement and in May 2017 she also had two hospital admissions, following which she accepted care and support services. She remained fiercely independent, however; she continued to drink, and did not easily engage with services, sometimes denying access or declining care. There were changes of care agency due to concerns expressed by BB’s daughter. In October 2019 the third and final agency to be involved raised concerns about ongoing risks from her self-neglect and use of alcohol, and about fire risk. Shortly before BB’s death her daughter had requested assistance from ASC to facilitate BB moving to live with her as a way of managing the risks, but this was not progressed before she died.

4.2.4. BB’s son and daughter have separately provided information to this review, describing their mother’s decline. Her son sees the main difficulty as being the interface between alcohol use and mental health and the challenge of identifying cause and effect. He referred to her separation from her husband in the 1980s and her move to Devon at that point, working as a freelance supply teacher. He described her as stubborn and set in her ways, also introverted and suspicious, but she was passionate about nature and had a good bond with her granddaughter. He did not see her as an alcoholic but as someone dealing with sadness after the breakup of a relationship in 2016 and the effects of a subsequent fall that was pivotal for her health. She was then devastated to have to stop driving and to lose her dog.

4.2.5. BB’s daughter described her mother as having been strong and powerful all her life, showing no weaknesses. She herself had moved to Devon to assist her mother with her declining health. She used the term ‘functioning alcoholic’ to describe her mother’s relationship with alcohol, which had been lifelong, and indicated that the GP had mentioned a diagnosis of Korsakoff’s Syndrome. She believed BB’s relationship in 2016 had been imagined.

4.2.6. Asked what might have been done differently by agencies, BB’s daughter felt that investigations into her mother’s refusal of personal care should have been more thorough and the risks she faced more effectively managed. She felt she had to intervene to secure good care and was happy only with the work of the third care agency. BB’s son said something similar – agencies needed to work round an individual’s resistance, not just take it at face value. And he indicated that with more advice and guidance from agencies the family might have been more proactive in taking measures to make the house safer. He himself was not a key contact for agencies and would have welcomed more direct involvement in discussions. He referred also to the need for more discussion about BB’s state of mind and of the reasons for her behaviour – it seemed to him there was no plan to get her better. He was critical of the GP’s view that there was little to be done by way of intervention while BB continued to drink. It was evident that she was very low in mood at times, particularly in the week before she died, leading a neighbour to query to the family whether she had taken her own life.

4.2.7. The agencies involved in BB’s case were

·       Care Providers: Exmoor Community Care and Home Life Carers were both involved in providing care and support services to BB, commissioned by Devon County Council Adult Social Care.

·       Devon & Cornwall Police: BB made a number of reports to the Police – allegations that a friend had stolen property from her, claims of a sexual relationship with a neighbour, rumours about people being paedophiles or murderers, concerns about a neighbour standing in the street, allegations of theft. Throughout these contacts the Police noted the poor condition of her property, which was dirty and unhygienic, evidence of her alcohol consumption and concerns for her mental health. Officers raised a number of ViST[8] concerns and on occasion liaised with BB’s family.

·       Devon & Somerset Fire & Rescue Service: FRS undertook a home fire safety visit in March 2017, giving advice and fitting smoke alarms. They attempted a further visit in December 2019 following referral from the care agency but were turned away as BB had just soiled her bed and was receiving personal care; the visit was due to be rearranged but BB died before it could take place.

·       Devon County Council Adult Social Care: ASC provided a short-term residential placement in 2017, when concerns were first raised about BB’s self-neglect and fire risk, and thereafter commissioned care and support services from a series of care agencies. The first of these withdrew. The second raised repeated concerns about absence of heating and hot water, use of the gas cooker as a source of heating, use of alcohol, financial management and debt, squalid conditions in the home and refusal of care. The care and support plan was changed to focus on domestic tasks and shopping rather than personal care, but ongoing disputes with BB’s daughter arose. A safeguarding concern raised by NHS 111 in August 2019 led to the need for a Care Act re-assessment being recognised, but there is no indication that this took place. A third agency took over in September 2019 and raised ongoing concerns about BB’s use of a condemned boiler, alcohol consumption and fire risk. They advised ASC that they intended to raise a safeguarding concern but were told that this wasn’t necessary. BB died 3 days later.

·       Devon Partnership Trust: Liaison Psychiatry assessed BB in May 2017 during her first hospital admission. Her alcohol withdrawal plan was to be continued and she was to be referred to RISE and Pathfinder. On post-discharge follow up at home, she was diagnosed with a (possibly alcohol-related) mild to moderate degree of memory impairment and was discharged from mental health services.

·       GP: BB had contact with a number of her surgery’s GPs, who received frequent notifications from other agencies of incidents related to her health and use of alcohol. GP home visits were sometimes conducted in response, as well as liaison with BB’s family and referrals to other agencies. The GP last saw BB in October 2019, planning to follow up on thyroid function tests (although BB died before this was done).

·       North Devon Healthcare NHS Trust: BB attended the Emergency Department in May 2017 following a fall and was transferred to Royal Devon & Exeter Hospital for surgery to her injuries. Returned to North Devon Hospital for alcohol detox, she insisted on being discharged before being readmitted the following day, having been found on the floor at home, weak and incontinent. In September 2018 a community matron and community nurse undertook a falls assessment at BB’s home, which was seen to be in a very poor state of disrepair with damp and black walls throughout. They noted fire risk also: a smoke alarm not working and a blackened extension lead. Community nursing became involved again in September 2019 and noted concerns about BB’s mood, diet and drinking. On their visit, a neighbour related an incident the previous evening in which two young men had spent some time in BB’s house. The community nurse intended to pass on these concerns but following consultation with their team leader did not do so.

·       Royal Devon & Exeter Hospital: BB received surgery for injuries sustained during a fall in May 2017. She was later transferred back to North Devon Hospital for alcohol detox.

·       South Western Ambulance Service attended BB on 12 occasions: eight in 2017; two in 2018 and two in 2019. Calls included injuries when she was out in the community and falls sustained at home. Her home was observed to be in a very poor state without essential services and with evidence of excessive alcohol consumption.  Two safeguarding referrals were made in 2017 and concerns about her driving while under the influence of alcohol were referred to the GP and to her family.

[8] A ViST concern is submitted whenever a police officer, through the use of a Vulnerability Identification Screening Tool, identifies a child or an adult who is vulnerable due to care and support needs or risk of abuse or neglect. The Police Central Safeguarding Team determine whether the concern will be passed to other agencies and, if so, to which.

4.3 CC

4.3.1. Gilda, aged 66, was found deceased at home. Cause of death was determined as cellulitis with sepsis. Antecedent causes were given as severe intertriginous dermatitis. Other significant conditions contributing to her death were impaired glucose tolerance, chronic kidney disease (stage 3) and schizophrenia.

4.3.2. Gilda’s brother has provided biographical information, enabling a short pen-picture to be presented. Born in 1953, she was the eldest of three children. As a child in a happy family, with two younger brothers, she was exuberant with a big personality and a great sense of humour, as well as a vivid imagination. From her teenage years she would tell stories and say ‘strange things’. Looking back, her brothers can piece a jigsaw together. She went to university to study agriculture but returned home after graduating and never used her degree. Eventually she bought a house and worked for social security. Later she would express regret about not progressing her career and about not having children – she did have relationships and got engaged while at university, and she was a good auntie. She was good to be with, good at networking and meeting people. However, she could also be domineering and difficult, with a powerful personality and might have created problems at work. Her mother died when Gilda was aged 33 and she took this loss hard – she had lost a regulating influence. Her mental health problems began when she was 42. She would talk about an imaginary husband and telepathic communication and was diagnosed with schizoaffective disorder. She had swings of extreme manic behaviour when she was really ‘up’ but was not depressed. She denied and hid things from her family and did not share everything – for example she did not share delusional thoughts about having a husband and children with her family – and  would rarely admit to having a mental illness.

4.3.3. Gilda had had eight hospital admissions under the Mental Health Act 1983 between 1996 and 2015. Her brother recounts that in 2007 things got out of hand at work where she was manager of a call centre. She was offered an advantageous severance package but declined and instead resigned with no means of support, living on her savings and falling into mortgage arrears. She was sectioned in 2008 and began seriously to neglect her personal care and hygiene, which was noticeable to the family. Her brother was her Nearest Relative[9] and also took over her finances, but this was difficult as she tended to undermine the arrangements. He had considered application to the Court of Protection but didn’t want to further damage their relationship, which was also under stress due to the disclosure of the family’s perspectives during her application to a Mental Health Review Tribunal. Her brother has expressed concern about the lack of continuity of support from mental health services; at times she would be discharged only to be re-sectioned.

4.3.4. Since her last discharge from hospital, she had been receiving mental health aftercare, from Devon Partnership Trust (DPT) initially under a community treatment order. She had a history of self-neglect when unwell, could become increasingly paranoid, suspicious and verbally hostile and would disengage from services. At times she expressed delusional thinking. She had limited contact with her family and did not engage with friends or social networks but did respond to requests for medical reviews by her GP. She usually also responded to her support workers, who from 2016 were commissioned (2 hours per day) by Devon County Council Adult Social Care (ASC) to prompt her about medication, nutrition and hydration, to assist her to attend appointments, and to support her activities of daily living. They were expected to contact her community psychiatric nurse if her mental health deteriorated.

4.3.5. In January 2019, Gilda’s brother notified DPT of his concerns about her self-neglect and the community psychiatric nurse (CPN) also observed deteriorating home conditions. DPT, however, reduced her care and support from 14 hours per week to 8 hours[10]. Her brother challenged this as unsafe. In May 2019, at outpatient clinic review, she was recorded as being cognitively intact, although with some fixed delusions. She was reluctant to attend a day centre and keen to discontinue anti-psychotic medication. Her monthly CPN visits ceased due to her CPN leaving, and another was not allocated before she died.

4.3.6. By September, ASC at review found her unkempt, with poor hygiene, poor physical health and declining mental health. She did not allow the social worker to see around the house and there was no further visit by a social worker before her death. She was discussed at a Community Mental Health Team multidisciplinary meeting, and in October was seen by her GP for routine review in the presence of her care worker, the last time her GP saw her. Her brother believes that these reviews should have observed her deterioration and her difficulties with managing activities of daily living. He observed that problems with various activities of daily living had been evident for over a decade and that her consultant, prior to her last hospital discharge, had been sceptical about whether she would manage at home. He also believes that she might have been too embarrassed to request help.

4.3.7. Her brother has stated that she stopped taking her medication in November 2019 – both he and the Police found unused packs in her property after she died.  He considers her medication was not well managed; it was not followed up when flagged and there was no monitoring, for example by pharmacists. Sometimes she was heavily sedated and appeared badly affected, with physical side-effects. But was it also beneficial for her and he surmises she might have experienced withdrawal symptoms. The conditions in her house were very poor and she would often not allow the care workers access. He maintained contact with the care agency.

4.3.8. In December 2019 he renewed his concern about her declining mental health and care staff noted that she was increasingly declining personal care. She began to say that she was “going to Dave’s” for Christmas and this was not challenged as care staff had a policy of not challenging her delusions about fictitious relationships. Her brother has distinguished between not challenging her directly and not believing her, observing that two years previously care staff had delivered a Christmas meal, which she had appreciated, even though she had previously said that she was going away. The care provider did contact DPT and were advised that Gilda’s case was not allocated and that her brother should contact the duty team if concerned. On 23rd and 24th December care workers could not make contact with her but did not escalate this to their office or to the mental health team as it was not seen as an urgent matter.  Another carer failed to gain access on 27th December, being unaware that a key safe would have enabled entry and that there had been previous failed attempts to see her. On 30th December the carer expected to visit was unwell; the care provider did not attempt to contact Gilda to inform her, nor were DPT advised of the lack of contact. It was not until the care worker who was unwell requested the agency on 1st January 2020 to send someone else, as Gilda had not been visited for some time, that she was discovered deceased (following advice from the Police to use the key safe to gain access).

4.3.9. Following the discovery of her death, her brother raised concerns about a breakdown of communication within the care provider agency and between carers and himself. He has also noted to this review that Gilda had been found close to death before, unconscious and severely dehydrated. He considers her death was preventable. DPT made a safeguarding referral under section 42, Care Act 2014, which was allocated on 12th February and closed on 23rd March, having found no clear evidence of neglectful practice.

4.3.10. The agencies involved in Gilda’s case were

·       Devon County Council Adult Social Care: commissioned and reviewed her care and support; opened and closed a safeguarding referral

·       Devon Partnership Trust: allocated a CPN under her section 117 mental health aftercare plan; the CPN was not replaced after they left in May 2019

·       GP surgery: monitored her physical and mental health

·       Care provider: Meadowside (National Care Group) commissioned by Adult Social Care to provide care and support

·       Devon and Cornwall Police: responded historically to mental health incidents

·       South Western Ambulance Service NHS Foundation Trust: Attended when Gilda was found deceased at home

[9] Nearest Relative is a status held under the Mental Health Act 1983. The Nearest Relative is entitled to carry out certain actions under the Act in respect of the mentally disordered person.
[10] As Gilda’s care and support needs related to her mental health, they were assessed and managed by DPT under a Section 75 agreement (National Health Service Act 2006) and then commissioned by ASC in line with DPT’s assessment.

4.4 DD

4.4.1. DD died, aged 83, in Derriford Hospital on 9th May 2020. She had been admitted 10 days earlier following joint action by Devon Partnership Trust (DPT) and South Western Ambulance Service. On admission she was emaciated, covered in faeces, with urine burns, malnutrition and anaemia. The cause of her death was Covid-pneumonia.

4.4.2. DD had a history of mental ill-health, with diagnoses of schizophrenia and possible paranoid personality disorder. She had been discharged by DPT mental health services in October 2018 as her mental health was stable, losing the involvement of a community support worker who had been visiting weekly and with whom she had good rapport. It does not appear that a care and support assessment was suggested at that time and no care package was in place when she died.

4.4.3. Her self-neglect appears to have been longstanding. Home conditions included squalor, with cat food throughout, and DD urinating and defecating in her chair. She had a conviction for maltreatment of pets. DD lived a reclusive life and rarely left her home. She had lived with a companion who had died and both had shown signs of self-neglect. The property had been cleaned and cleared on at least one occasion. Little is known about her family – she may have had one sister, but there is no indication of family involvement.

4.4.4. Her main GP, who had known her for many years, had built up a relationship of trust and monitored her physical and mental health. While she was able to live independently when taking medication, her mental health would decline and her self-neglect increase, during which times she would have little insight into her situation. Her GP saw her in early January 2020, when she appeared stable. The GP had regular contact with her between January and March, with which she engaged, but her mental health showed signs of decline in early March when she was confused about her medication. This had happened before and had been overcome, so the GP was confident that with guidance on the dosette boxes it would be resolved. The GP continued to monitor both her physical and mental health into April, noting that her level of self-neglect was no different from normal.

4.4.5. Prior to the onset of the Covid-19 pandemic, DD was also supported by a neighbour/friend, priest and cleaner but this support was lost when the lockdown began. Her GP appears initially to have been unaware of this loss of support. It was a taxi driver delivering provisions to DD’s home on 17th April 2020 who raised concerns that alerted services to a deteriorating situation. Devon County Council Adult Social Care (ASC) liaised with the GP, who visited and described the situation as normal, dispelling fears of self-neglect. ASC advised the GP that they could not complete an assessment without her consent.

4.4.6. On 21st April 2020 the taxi driver renewed his concerns. DD was still refusing to consent to a referral to ASC. Another GP expressed concern about the state of her home and that she was dishevelled. The GP liaised with ASC but indicated she was unlikely to consent to an assessment or care package. The Police also conducted a welfare visit.

4.4.7. On 22nd April a different GP obtained her consent to a referral to ASC. Social workers visited on 23rd April. DD declined to show them how she moved around her home and also refused support and offer of a placement. The social workers determined to speak to the taxi driver but otherwise took no action.

4.4.8. On 24th April the DPT older people’s mental health service agreed to become involved following a GP referral and review of the records by a consultant psychiatrist. Around this time DD appears to have given permission for the home to be deep cleaned. The crisis team attempted unsuccessfully to contact DD by phone before finally visiting four days later.

4.4.9. On 28th April, following a multidisciplinary meeting within mental health services, a joint visit by social workers and community psychiatric nurses took place. When practitioners visited an ambulance was called and DD was admitted to hospital, where she died eleven days later.   While she was in hospital, the RSPCA were alerted to the fact that her cat and dog were not being cared for. On investigation it did appear that the animals were being fed. Following DD’s death, the RSPCA received next-of-kin permission to remove and rehome the animals.

4.4.10.The agencies involved in DD’s case were

·       Derriford Hospital: DD was admitted on 28th April and died in hospital.

·       Devon & Cornwall Police: The Police had only one contact with DD, attending in December 2018 when she called them because her house alarm had gone off when she burnt food in the oven.

·       Devon County Council Adult Social Care: Responded to an initial welfare concern, liaised with the GP, collated information, and visited but DD declined an assessment.

·       Devon Partnership Trust: Historic involvement with DD relating to her mental health. Her case was reopened shortly before her admission to hospital following GP referral.

·       GP surgery: Had longstanding involvement with DD, monitoring her physical and mental health

·       RSPCA: The RSPCA were involved in making arrangements for DD’s animals after her hospital admission and subsequent death.

·       South Western Ambulance Service Foundation Trust: conveyed DD to hospital on 28th April 2020.

4.5 EE

4.5.1. EE, aged 59, died on 11th July 2020, having presented at North Devon District Hospital the previous day. The cause of death was sepsis, infected right ring finger and renal failure. EE had a history of renal failure and other complex co-morbidities. He had been attending Royal Devon and Exeter Hospital (RD&EH) for dialysis. He was also known or had other referrals in place to other clinical specialties. North Devon Healthcare NHS Trust has completed a serious incident investigation report, which has been made available to this review.

4.5.2. EE had a son with whom he was not in contact and a sister who had not had regular contact with him. His past medical history included depression (2006), malignant hypertension (2013), and chronic obstructive lung disease (COPD) (2014). He had chronic renal failure (diagnosed 2013) and was having regular dialysis. He had an unspecified period of homelessness in 2013, a year when there was an increase in contacts for depression and renal failure. The diagnosis of kidney failure was devastating to EE who felt that his life had been ruined and that he was expecting to die. He was considered for a kidney transplant; however, due to a chronic lung condition he was not fit enough to undergo such an operation. In 2015 he was visited by Adult Social Care following referral by the South Western Ambulance Service. Poor living conditions were noted, but he was assumed to have capacity and although the social worker considered a safeguarding referral one was not made.

4.5.3. In early 2019 EE developed sepsis and received hospital treatment in RD&EH for approximately 6 weeks. He was found to have a range of serious infections: infective endocarditis, discitis, a mycotic aneurysm in his iliac artery and lung lesions that were assessed as representative of infective lesions.  He self-discharged from hospital on 18th February 2019 against medical advice without having had the arranged scan of his iliac artery. He was advised that he would need lifelong antibiotic therapy, with a daily dose of an antibiotic tablet and additional doses of intravenous antibiotics following his dialysis treatment three times per week. He remained fatalistic, however, often declining interventions offered and not following medical advice about lifestyle and choices. There was no reason to doubt that he had capacity to make these decisions and he was able to consider and retain information, understanding that he was putting his life at risk.

4.5.4. In February 2020 he consulted his GP about discomfort in his right armpit, where he felt the glands were larger and more uncomfortable. He had previously had a CT scan for this and was now referred for an ultrasound scan (which did not show anything of concern). He also complained of swallowing problems and vomiting, for which an endoscopy was arranged, and palpitations. He experienced trouble with his COPD but was unwilling to see the specialist nurse to discuss this further. In March 2020 he was sent a standard letter by his GP advising him to shield in view of the Coronavirus pandemic.

4.5.5. On 11th March his medication was changed and on 16th April he raised a concern that his inhaler was causing him to develop fluid retention, with swelling in his arm and ankles that had only started since the new inhaler. His GP also began to receive ‘did not attend’ letters from other healthcare providers, indicating his reduced engagement. This was seen as possibly due to the pandemic.

4.5.6. On 11th May the nephrologist wrote to EE’s GP advising him that they had stopped giving the intravenous antibiotic at dialysis in line with his wishes as he believed that this was the cause of his vomiting and loss of appetite. They cautioned that because his infection level was low it was reasonable to follow EE’s wishes, but that if this deteriorated then they would need to restart the antibiotic. The nephrologist also advised that the tablet antibiotic could also cause stomach upset and may also need to be stopped. The recommendation was that if his symptoms did not improve, he should be referred to gastroenterology.

4.5.7. On 14th May EE attended dialysis at RD&EH. He was reviewed by the nephrology team and had a blood test. He was offered admission but declined, although he did agree to return to hospital the following week for further review. On 28th May he attended dialysis, where he was noted to have an increasingly swollen right arm thought to be due to the fistula in that arm used to carry out dialysis. EE declined seeing the vascular access specialists, telling staff that ‘there is nothing that can be done’. His blood tests were reported to be improving on this day.

4.5.8. On the 8th June the Dialysis Unit telephoned the GP, concerned about EE’s welfare and that he had fallen several times and that he might need a care package. His weight had fallen to 55 kilos. He had also missed several appointments with the Gastroenterology Team. The GP discussed this with EE, who agreed he did need help but declined hospital admission. He agreed to restart his supplements and protein drinks. He was having problems with steps at his property and it was agreed that One Ilfracombe would be requested to deliver his medication. The GP referred EE to community health services, identifying concerns regarding his weight loss, weakness and reduced ability to care for himself and requesting support for him to change accommodation.

4.5.9. On 10th June EE attended for dialysis and was noted to have poor adherence to antibiotics and clinical advice. He was now receiving parenteral nutrition when he had dialysis in an attempt to boost his nutrition.  On 11th June the community matron contacted EE to arrange an assessment, with an appointment agreed for the following week. The same day it was noted at the haemodialysis unit that his blood tests indicated possible rising levels of infection. He was also experiencing diarrhoea and weak legs. The tests were to be repeated to check for infection and he was encouraged by the vascular access nurse specialist to return in a few days to see a doctor about the swelling in his right arm. He declined to attend on the 16th June but agreed to attend on 18th June.

4.5.10. At a visit by the community matron on 17th June EE declined access as he was embarrassed at the state of his home, which he was struggling to access. The community matron visited again the following week and noted significant risks associated with self-neglect, including rotting food, cat faeces, mould and flies. EE was unable to tidy up and put out the rubbish because of painful hands. A friend who used to help was now unable to do so because of Covid-19 restrictions. Also observed were a history of falls and two finger nails lifting up. EE agreed to the community matron returning the following day to assist with starting to tidy up the flat and remove some of the rubbish and he agreed to a referral about his housing situation[11]. The community matron planned to speak to the GP about his arms and hand and sent a photograph to the GP.

4.5.11. On 3rd July there was no answer when the community matron called as agreed to complete an assessment and clear rubbish.  On 6th July a community rehabilitation support worker visited. EE’s hands were swollen and looked grey, black tipped and sore. His accommodation was noted to be unhygienic with rotting food, flies, rubbish and cat food everywhere. EE was noted to be unable to help himself and as requiring a lot of help to get his flat clean. Six black bags were removed but more help was needed. The community matron recorded on 8th July that EE had declined a safeguarding referral. There was a failed contact on the 9th July from a respiratory nurse.

4.5.12. On 10th July 2020 EE presented at North Devon Hospital emergency department, having been found collapsed at home by the patient transport service when calling to take him for dialysis. He had not attended his planned renal dialysis for a week and was in acute kidney failure on a background of chronic kidney failure. The following day the hospital raised a safeguarding concern, observing two necrotic fingers, a large blister to his right inner thigh, reduced mobility, not eating well, and swollen right arm due to lymphatic problems. Despite proactive medical treatment and intervention EE died the same day. A safeguarding enquiry did not proceed as EE was deceased.

4.5.13. The agencies involved in EE’s case were

·       Devon County Council Adult Social Care: EE was visited in 2015, when self-neglect was noted but no further action was taken. ASC received the hospital’s safeguarding referral following his admission on 10th July 2020, but this was not pursued due to his death.

·       GP: the practice provided primary care to EE and liaised with other healthcare providers.

·       North Devon District Hospital: EE presented at the Emergency Department and was admitted, where he died the following day.

·       North Devon Healthcare NHS Trust: the Trust provided community healthcare support.

·       Royal Devon & Exeter Foundation Trust: EE attended Royal Devon & Exeter Hospital three times a week for dialysis and was seen every 3-4 months by a nephrologist.

[11] North Devon Council Housing Department have no record of any approach being made to them.

4.6 FF

4.6.1. FF, aged 56 and White British, died on 17th September 2020 less than a week after discharge from hospital. He had been discharged without social care or mental health support, despite a multiagency meeting concluding that these were necessary. No social care assessment was undertaken despite a referral raising significant concerns about self-neglect and alcohol use. A post-mortem report identifies the cause of death as bilateral subdural haematoma and liver cirrhosis.

4.6.2. FF had a long history of heavy alcohol use, one possible trigger being vicarious trauma from his work in children’s social care, alcohol being used as a coping strategy. He spoke about having children of his own, but little is known about his family. He had moved to Devon in 2016/17. From 2017 onwards, he presented to Royal Devon & Exeter Hospital (RD&EH) a total of 14 times, each in relation to complications from excessive alcohol or withdrawal from alcohol. He already had advanced liver problems when he was first seen, and had alcohol-related complications, including melaena, haematemesis and oesophageal varices. At times he was of no fixed abode, at others he was living in a tent, or in sheltered accommodation. On occasion assistance was given to help him access housing. He registered with East Devon District Council as homeless in March 2019 and was placed in emergency accommodation, but was asked to leave after 2 weeks. From August 2019 he was re-accommodated in alternative emergency accommodation and a referral was made to the Bournemouth Churches Housing Association (BCHA) Housing First initiative.

4.6.3. In October 2019 he was admitted to RD&EH with visual and auditory hallucinations, having stopped drinking some days previously. An ongoing management plan involved abstinence from alcohol with support from Alcoholics Anonymous and a social worker.  In mid-November FF twice reported to the police concerns that he was at risk from neighbours and people outside his flat. On 15th November he was again admitted to RD&EH with symptoms arising from alcohol withdrawal.

4.6.4. A Devon Partnership Trust (DPT) liaison psychiatry assessment in late November 2019 found his hallucinations to be attributable to alcohol withdrawal, with no signs or symptoms of mental illness or severe and enduring mental ill-health. FF moved into his Housing First tenancy on 25th November 2019, following discharge from hospital.

4.6.5. In December 2019 the social care practitioner supporting FF requested a police welfare check as FF had been out of contact with her for some days. The request was denied as it did not meet police criteria, but four days later a Police Community Support Officer who knew FF and was familiar with his circumstances took the initiative to call at his address, learning from a neighbour that FF had left 2 days previously.

4.6.6. In April 2020, during the first Covid-19 lockdown, South Western Ambulance Service (SWASFT) attended him in the street where he had fallen. He refused hospital admission, but was later found lying in a garden, was returned home and given safety netting advice. On 27th April 2020 the hospital advised him that although decompensated liver cirrhosis diagnosis did not fall within the government Covid-prevention measure of advice to shield, there was a higher risk of infection and he should adhere to strict social distancing measures and might also wish to consider shielding. A face-to-face appointment was to be arranged following resolution of Covid-19 restrictions.

4.6.7. On 17th July 2020 BCHA raised concerns about FF’s living conditions, falls, memory problems, poor diet and alcohol use. On 20th July 2020 SWASFT also raised a safeguarding concern, having been called to a public house where FF appeared confused. Returning him home they had found it very dirty, with few possessions, little food and trip hazards. In response, on 23rd July a social care assessor and housing officer made a joint visit and found his self-neglect not to be at a level posing immediate risk, although he was keen to engage and wanted help to get his home in a better condition. He was offered daily housing support contact, support with diet, a deep clean, clothing and household equipment. His GP was alerted and referred him to Neurology for assessment, noting intermittent confusion, history of falls, poor balance and double incontinence. The community matron also visited at the GP’s request. The safeguarding enquiry was closed, with further work to continue via care management.

4.6.8. On 28th July Devon County Council Adult Social Care (ASC) started a care and support needs assessment under the Care Act 2014 but this was abandoned as FF was admitted to hospital. He had attended for a scan appointment at Nightingale Hospital but was transferred to the Emergency Department at RD&EH due to concerns about his presentation. There a CT scan showed bilateral subdural haematoma with midline shift and he was taken to Derriford Hospital for neurosurgical assessment. The following day he had surgery for a subdural haemorrhage. Back at RD&EH, at one point he was detained using DoLS, having become muddled, agitated and aggressive, but the restriction on his liberty was removed when he was transferred to Mardon Neurological Rehabilitation Unit in August 2020. There his behaviour was attributed to his haemorrhage and mental health assessment was not pursued. He received full rehabilitative assessment and therapeutic input, including psychological assessment and goal planning/ preparation for a return home. The Mardon Centre referred him to the Community Mental Health Team (CMHT), the referral noting bilateral subdural haematoma and clot evacuation, extensive history of alcohol excess and self-neglect, and a decline in his mental health, including hallucinations when using alcohol. The referral requested assessment and ongoing management of FF’s alcohol excess and possible underlying Korsakoff’s or alcohol-related brain injury, but it was declined by the CMHT; referral to Together Drug & Alcohol Service was instead recommended.

4.6.9. His ASC social care practitioner continued to liaise with the hospital and with BCHA over discharge arrangements. FF, although confident about discharge and well-motivated to abstain from alcohol, was requesting an increased level of support. A virtual discharge planning meeting on 2nd September agreed that he would be referred to social care reablement, to the community continence services and to community mental health services and would receive ongoing practical support from BCHA.

4.6.10. It became apparent, however, that a significant element of the discharge plan – social care reablement – could not be delivered as FF did not meet the criteria, nor were alternative sources of support available. His clinical team considered that it was safe to discharge him without support as his skills had further improved since the planning meeting, and his psychologist had indicated that he had mental capacity to make decisions about drinking. BCHA staff, however, expressed serious concerns about his discharge. On 9th September, the date planned for his discharge, they initially declined to give FF the keys to his flat and he was returned to hospital. Following management intervention this was resolved and FF returned home.

4.6.11. Following his hospital discharge, both the ASC practitioner and the housing support worker made visits to FF and quickly noted signs that he was drinking. On 13th September 2020, the police found him in a pub – he had been drinking, had dried faeces on his trousers and ill-fitting clothes were exposing part of his body. By the following day it was clear that he was drinking excessively and not eating; his flat was very dirty, his mood was deteriorating and he seemed unaware of risks. The social care practitioner raised concerns with the GP, who arranged for the community matron to visit, accompanied by the social care practitioner. It was on that visit, on 17th September, that they found him unresponsive and called emergency services who confirmed he was deceased.

4.6.12. The agencies involved in FF’s case were

·       Bournemouth Churches Housing Association: BCHA provided support to FF under Housing First, a national scheme providing housing and support to people with multiple, complex needs including experiences of long-term homelessness and rough sleeping.

·       Devon & Cornwall Constabulary: The Police were involved in investigating incidents in which FF complained about feeling unsafe, and also when members of the public expressed concern about him or his behaviour. No criminal prosecutions were pursued.

·       Devon County Council Adult Social Care: ASC became involved with FF in July 2020 as a result of a safeguarding referral relating to his self-neglect. A previous safeguarding referral had been made in July 2019.

·       Devon Partnership Trust: DPT provided psychiatric liaison services for mental health assessment while FF was in hospital in November 2019 and psychological services while he was in Marden Neuro Rehabilitation Unit in August/September 2020.

·       East Devon District Council: EDDC at times accommodated FF in emergency accommodation and provided the property in which he took up his Housing First tenancy in November 2019.

·       GP: Information was not requested from a GP.

·       Royal Devon & Exeter NHS Foundation Trust: FF was admitted 14 times to hospital for treatment of conditions related to his alcohol use. In 2020, following his last admission, he spent time in the Marden Neurological Rehabilitation Unit prior to his discharge home.

·       South Western Ambulance Service Foundation Trust: SWASFT attended FF during incidents in the community arising from his alcohol use and poor health.

5. Thematic Analysis

This section reports on the review findings, organised thematically within four of the five domains: direct practice, interagency working, organisational features, and Safeguarding Adult Board governance. Within each domain, key themes emerging across the cases are identified to give insight into potential systems issues affecting practice.

5.1.   Domain A: Direct practice – How practitioners engaged with the individual

5.1.1.       How well were health and social care needs met?

There were examples of good practice.

·       BB received appropriate medical, surgical, occupational therapy and physiotherapy attention, with transfers between hospitals to facilitate attention to her healthcare needs. RD&EFT gave good holistic consideration to her physical and social needs, going beyond the matter for which she had been referred. Her GP took a proactive role in visiting BB both at home and during her admission to the care home. In 2017 SWASFT crew arranged for essential services to the property. Adult Social Care made a rapid response to identified risks in 2017. And in September 2019 when a complaint from her daughter resulted in a change of care agency, ASC undertook a Care Act assessment in October and reviewed this the following month.

·       RD&EFT provided occupational and physiotherapy input to AA while he was awaiting his tenancy in 2018. Staff in the hospital showed concern for his low mood, intermittent anger and lack of communication and referred him again to psychiatric liaison to consider his mental health needs and his mental capacity. Derriford Hospital paid due attention to the need for medical optimization prior to his surgery. Both acute and community-based staff remained compassionate and did not cease efforts to support him, despite his hostility to their efforts. The social care assessor made extensive efforts to pursue suitable options, recognizing his desperate need for a return to some kind of normality. She took a personalized approach, seeking information that would enable AA to understand his medical condition and the events of the previous few months.  When AA discharged himself, urgent action was taken to provide a hospital bed and support from the Urgent Community Response Team.

·       Proactive attention was given to FF’s homelessness, with a sequence of emergency accommodation placements and support provided before a Housing First placement. He received comprehensive neurological rehabilitation and robust psychological assessment. The social care practitioner who visited in response to the safeguarding concern in July 2020 remained involved for continuity and developed a good, supportive relationship with FF. This was a potentially very helpful stage in intervention, sadly overtaken by his health breaking down shortly afterwards. Following his discharge, the continuity of relationship was again maintained.

·       EE’s GP had an on-going relationship with EE, making appropriate referrals in relation to EE’s physical health and referring his support needs to community health, who were proactive in clearing household debris from his accommodation. In hospital attempts were made to optimise his nutritional state.

·       Gilda: Care provider staff had a good understanding of Gilda’s needs and wishes. There was a clear plan to prompt her about appointments, medication, nutrition and hydration and to alert DPT should her mental health decline. Her GP, CPN and consultant psychiatrist liaised to provide attention to her very high prolactin levels in 2019.

·       The care given to DD by University Hospitals Plymouth was thorough – she was seen by multiple clinicians. The DPT Older People’s Mental Health Team responded quickly when her GP referred her in April 2020.

However, there were also shortcomings across all cases.

·       BB: There appears to have been no attempt by any agency to moderate BB’s alcohol consumption, secure treatment or manage the risks arising. Her GP, noting at her dementia review that she consumed 1 litre of vodka per day, described her as ‘pleasantly confused’ and made no further referral for either her mental health or alcohol use. BB’s reluctance to engage appears to have been merely accepted by ASC, rather than explicitly addressed and it is not clear how much perseverance was shown in contacts with her. ASC have reflected that direct payments to fund a personal assistant might have better facilitated a positive working relationship with her. Following a safeguarding concern raised in August 2018, an ASC reassessment was allocated in October but did not take place.

·       AA: On discharge from hospital AA had no continence products with which to manage his bowel incontinence. This appears due to a breakdown in communication between hospital-based and community-based services, which will be considered in a later section. But it is clear that the absence of suitable supplies contributed to a significant loss of his personal dignity and to conditions in his home that by any standards were appalling. Of even more concern are the actions of the care workers from the Rapid Response Team who made his morning visit at 8.55 on 28th December. On being unable to rouse him they concluded he was pretending to be asleep and merely left a note by his bed. It was not until later that morning that community nursing and adult social care staff on their own planned visit were also unable to rouse him and at 12.24 called emergency services to take him to hospital, where he died later that day. This review has not received any evidence that the actions of the early morning care workers have been investigated, but on the face of the facts as presented must conclude that their omission to take appropriate action when he was first discovered unrousable caused valuable time to be lost in the intervening period, during which medical intervention could have taken place.

·       : The social care practitioner advised during discharge planning for FF that a Care Act assessment would only be considered for possible long-term ongoing support if it was believed he might meet areas of eligibility, for example, if he wasn’t managing to get washed/dressed, maintain home, nutrition, shopping, home environment, finances and wasn’t being supported in these needs by another person/service. This is not a lawful interpretation of assessment entitlement under the Act. Attention to FF’s alcohol use was insufficiently proactive. RD&EFT have reflected that they had employed an alcohol liaison nurse from February 2020 and a referral could have been made at the time of his psychology assessment in August/September 2020.

·       EE: Despite EE’s obvious inability to manage tasks of daily living there was no Care Act 2014 care and support needs assessment in the final weeks of his life. His support worker did not escalate concerns about his observed deterioration (for example a blackening finger) to the GP or community matron. The community matron did not take baseline observations. In mid-June 2020 the community matron did note an intention to refer to Adult Social Care for support with managing his daily living in the context of physical difficulties, but there is no evidence that a referral was made. The GP’s reflection accepts that concerns about EE’s social situation were only raised very late on, perhaps reflecting the impact of Covid when minimal face to face contact made the deterioration in his living conditions, and therefore his underlying health issues, less visible. Equally they comment that the care needs of vulnerable, shielding patients during the pandemic were likely to increase due to the reduction of informal community supports on which they were routinely relying. The surgery comments that the decline in his health may have been reduced somewhat with a community support package but it is unlikely that he would have accepted these and it is unclear whether earlier intervention would have altered the final outcome.

·       Gilda: In December 2019 the concerns about worsening mental health and declining personal care expressed by Gilda’s brother and her care provider did not prompt either allocation of a CPN by DPT or a social work visit, this despite the social worker having noted severe deterioration already in September. It was assumed that the GP was monitoring her physical health, although the last GP contact was two months previously. At post mortem significant physical health issues were noted. It is possible that her physical health needs were obscured by the focus on her mental health, raising questions about parity of esteem. Her brother has observed that Gilda had both longstanding mental and physical health problems and he believes that the latter were insufficiently addressed. To support his view, he reflected on the cause of death and observed that when her body was found it was “covered in dermatitis.”

·       There was certainly insufficient risk assessment and risk management planning when Gilda was out of contact and it is questionable whether the reduction by DPT of her support package to 8 hours per week in January 2019 had been appropriate. Her brother has reported that her final hospital discharge was conditional on commissioning a care package comprising two visits daily, in order to safeguard her and to monitor closely whether she could cope at home. However, the first care provider withdrew and the second provider did not cover weekends or bank holidays. In her brother’s view, a refreshed risk assessment at this juncture would have been appropriate, given concerns that she would not cope.

·       DD: Adult Social Care advised they were unable to carry out a care and support needs assessment without her consent, despite the evidence of her self-neglect; this does not take appropriate account of section 11 of the Care Act 2014, which permits assessment without consent where the individual is experiencing or at risk of abuse and neglect (including self-neglect). Even prior to her final admission to hospital an assessment had not taken place, with ASC having focused instead on collating information about the concerns, and perhaps seeing this as a case for medical rather than social intervention. Since closure of DD’s case by DPT in 2018, her mental health had been stable due to the support her neighbour provided with medication – this support ceased with Covid lockdown arrangements. When she was referred by her GP in April 2020, DPT had difficulty contacting her, raising a question about whether the Trust’s no contact protocol clearly covers such situations. The GP has questioned their own decision not to carry out an assessment under the Mental Health Act 1983 at this point, observing that there may have been a level of acceptance about her situation based on prior knowledge of it. They have also reflected, with the benefit of hindsight, that there were missed opportunities to refer her back to mental health services at an earlier point.

5.1.2.       Mental capacity

Mental capacity was explicitly considered in three of the cases.

·       BB’s capacity was assessed while in North Devon District Hospital in 2017 and ASC allowed time to maximise her capacity and suggested referral to psychiatric liaison. They also advised her son to consider seeking Lasting Power of Attorney at this point when it was considered she had capacity.

·       AA’s capacity was assessed by RD&EFT in June and October 2018 in relation to his decision-making on healthcare needs and treatment. Both times he was found to have capacity to understand the risks of non-compliance, aware of the potential consequences. Historically his GP at all times had considered he had capacity to make decisions on health care and medication compliance.

·       The Serious Incident Investigation Report relating to EE notes that the nephrologist did not doubt that he had capacity to make decisions about his treatment in 2019 (although it is not clear whether this arose from assessment or assumption of capacity).

However, shortcomings can be observed in five of the cases.

·       Adult Social Care did not assess BB’s capacity, despite her alcohol use and continued high-risk decision-making. Social care workers did not see any reason not to assume capacity and did not therefore undertake any assessment, despite her continued high-risk decision-making, a joint visit between Liaison Psychiatry and Adult Social Care was planned for the purpose of carrying out a formal capacity assessment, but this assessment did not take place as the community psychiatric nurse felt she had capacity and that full assessment was not warranted. On only one occasion does there appear to have been any discussion with BB by ASC about her decision-making. No attention appears to have been paid to possible loss of executive function in the context of her long-term alcohol use and the consequent impact on her decision-making in the moment. ASC have acknowledged that a capacity assessment would have given the opportunity to consider executive function and to assess in depth her ability to understand, retain, use and weigh relevant information, including her understanding of the consequences of her decisions[12].

·       BB also routinely refused community nursing care, but there was no apparent consideration of whether this was capacitous refusal. There appear to have been changing perspectives on her capacity. While in hospital in 2017 appears she was detained using the Deprivation of Liberty Safeguards, which of course would require her to have been assessed as lacking capacity, but there is no record of such an assessment. It is also unclear where the DoLS was applied. The North Devon Healthcare NHS Trust refer to it as having been used while she was on temporary transfer to RD&EH, but RD&EFT have no record of any DoLS process. NDHT do question why her mental capacity was not considered even when risks associated with her decisions and self-neglect escalated. They observe that there continues to be a lack of understanding about the Mental Capacity Act and that staff struggle with its application in practice.

·       In relation to AA, RD&EFT note that although staff at times questioned whether he had capacity, only two formal assessments appear to have taken place. They acknowledge that as his mood and his physical condition deteriorated his capacity may have varied and conclude that regular review of his capacity would have given a clearer picture of his understanding about the risks of his behaviour. Here also consideration of executive function was missing, despite an observation that he appeared to want to manage his needs but then did not carry through on this.

·       Adult Social Care practitioners relied on assumptions of capacity throughout their involvement with AA.

·       When AA did not return to hospital on 4th December 2018, the community matron requested a capacity assessment prior to the hospital formally discharging him. Reliance was placed at this point on the view of ambulance staff that he had capacity to refuse to return to the ward. Two days later, in response to requests for advice by UCRT, the ASC safeguarding team advised a mental capacity assessment in relation to his self-discharge, but there is no evidence that one took place. Yet the assertion that he had capacity and was making a lifestyle choice was a material factor in the decision not to proceed with a s.42 enquiry following the safeguarding referral made by the community matron on 19th December. It is not clear what evidence was available to support that assertion.

·       Even on 24th December, four days before AA’s death when his GP visited to discuss his non-compliance, no formal assessment took place despite the gravity of his circumstances.

·       In Gilda’s case there is no evidence of a formal mental capacity assessment with respect to any decision – she was assumed to have capacity. When she declined to see the GP when unwell, the care provider considered there was no reason to doubt her capacity but it is unclear on what that judgement was based. Gilda’s brother has acknowledged that she was very protective of her living space and would not allow people into her kitchen or bedroom. She was, however, living in “awful conditions” and her brother has questioned why, in the context of a history of concerns about her managing at home, practitioners did not act in her best interests to see her living spaces. After her death, he found that her bed was saturated with urine.

·       For DD there were missed opportunities for MCA assessments; her situation seen through the lens of a lifestyle choice. In the weeks before she died, her GP had doubts about her capacity regarding medication and thought it unlikely that she understood the changes to it, which increased the risk of non-concordance. She was unable to manage liquid medication but when not taking it she had limited or no insight into her needs and her self-neglect would escalate. The GP reflects that were she not taking her liquid anti-psychotic medication, this would have impacted on her mental capacity. No capacity assessment was undertaken, however, and the GP reflects that capacity, in the context of the interface between the Mental Capacity Act and the Mental Health Act, was not robustly considered, and indeed there may be some uncertainty about forward pathways for exploring mental capacity when there is a lack of cooperation from the patient. When ASC practitioners visited on 23rd April 2020 and DD refused support, no consideration was given to whether she had capacity to make this decision, despite knowing of the GP’s doubts about her capacity in respect of medication. They reflect that had an assessment found she lacked capacity in relation to accepting support, a best interests decision to ensure she received care might have been made.

·       When FF was discharged from neurological rehabilitation in 2020 no mental capacity assessment was undertaken as he had not demonstrated any reason to doubt his capacity to make decisions about his discharge and his care needs. Yet there were concerns that he may have Korsakoff Syndrome – the unit included a request for this to be assessed when they referred him to the Community Mental Health Team. Korsakoff Syndrome would potentially affect executive brain function and therefore impact upon decision-making in certain contexts. There is no evidence that this was considered, and indeed CMHT declined the referral so no further action was taken to evaluate potential impact of possible Korsakoff Syndrome on his decision-making.

5.1.3.       Safeguarding

Elements of good practice can be found in four of the cases.

·       In respect of BB, SWASFT raised safeguarding concerns with ASC, the GP and the Fire & Rescue Service., and reflect that the ambulance clinicians concerned showed good understanding of the need for safeguarding and of correct process. When BB’s daughter raised a complaint of theft from BB in September 2019 but the Police were unable to see BB due to her care needs being attended to, they arranged a neighbourhood officer visit to ensure appropriate safeguarding measures were in place.

·       With regard to FF, the Police comment that the Police Community Support Officer who took the initiative to visit FF on the basis of a previous knowledge, when the Police declined ASC’s request for a welfare check, showed excellent professional curiosity and knowledge of their community. The submission of intelligence after the visit enabled other officers to have access to the information.

·       In EE’s case, North Devon District Hospital raised a safeguarding concern following his presentation at the Emergency Department the day before he died.

·       In DD’s case, a taxi driver shared concerns having observed DD’s self-neglect, and the hospital also raised a concern following her presentation with severe self-neglect.

A range of shortcomings, however, are also present in how agencies safeguarded the individuals concerned.

·       In BB’s case, Adult Social Care recognise that the failure to pursue a safeguarding enquiry following repeated referrals about evident self-neglect represents a missed opportunity to engage a multiagency strategy for risk management. They reflect that practitioners and managers alike can become desensitised and fail to react even to extreme living conditions. North Devon Healthcare NHS Trust observe failures to recognise the need for concerns about risk to be escalated and shared, both internally though line managers and the Trust’s safeguarding team and externally to the local authority safeguarding team. Even when in 2018 district nurses were advised by the GP to raise a safeguarding concern about the poor state of BB’s home and her use of alcohol, there is no evidence that they did so. On another occasion, when district nurses learnt from a neighbour that two young men were spending time at BB’s home, they were advised by their team leader not to raise a safeguarding concern on the erroneous grounds that the report was ‘hearsay’.

·       There was thus a lack of proactive safeguarding response from some of the key agencies concerned who failed to escalate concerns about the evident risks, both medical and environmental, in her situation. When a care worker in October 2019 reported BB’s reluctance to accept personal care, her hoarding and alcohol use, the absence of hot water and her use of the gas rings, both the family and ASC responded that this was BB’s choice and that she had capacity to make it. The agency told ASC three days before BB died that they intended to raise a safeguarding concern but were told it wasn’t necessary to do so, causing them to be concerned about apathetic responses to risk. Thus, throughout this unfolding situation there is potential overshadowing of one aspect of BB’s presentation by another – risk from third parties overshadowed by the focus on her self-neglect, yet her self-neglect overshadowed by the assumption of mental capacity and lifestyle choice.

·       In AA’s case, nine days before he died the community matron raised a safeguarding referral about the conditions in which he was living. Although safeguarding triage noted that the criteria were met, the referral did not proceed to a section 42 enquiry ‘on grounds of proportionality’ – AA had mental capacity to make his own decisions and a care package was in place. This decision was immediately challenged by the Community Matron but was not changed. It must be noted that where the criteria set out in section 42 are met, a safeguarding enquiry is mandatory; the local authority does not on any grounds have discretion not to carry one out or cause one to be completed. The decision not to place the case within safeguarding is a serious and concerning omission.

·       In respect of FF, the Police have commented that officers attending an incident in which he was found unkempt and intoxicated should have submitted a ViST report, to be shared with other agencies already providing him with support to provide them with a fuller picture.

·       In EE’s case, the community matron, GP and community rehabilitation support worker all missed opportunities to refer self-neglect as an adult safeguarding concern in the weeks before he died. The GP has reflected that while aware that safeguarding does not require the individual’s consent, they did not feel referral was necessary because EE had always been very open and honest about his condition. The community matron did witness the state of EE’s home and secured his agreement to supporting him with tidying and removing rubbish. North Devon Healthcare NHS Trust reflect that the matron possibly did not see his conditions as self-neglect – he had previously always been accepting of help. There appeared to be uncertainty about the threshold at which respect for autonomy should be balanced with a duty of care in relation to self-neglect, with or without the individual’s consent, and about the role of safeguarding in supporting teams with the care and management of a patient who self-neglects.

·       North Devon Healthcare NHS Trust have indicated that the question of raising safeguarding concerns without the patient’s consent has provoked a great deal of debate, as well as discussion of the level of self-neglect at which this should be done. Their understanding of current advice from the ASC Safeguarding Team is that a safeguarding concern can be raised without consent where there is significant risk of harm or death or where it is in the wider public interest. Yet staff are also advised never to ‘drop’ patients with capacity whose self-neglect presents as unwise decisions, but to continue contact, try to build the relationship and find interventions that the patient finds acceptable. Clearly these two pathways are not mutually exclusive, and further clarification and guidance from the TDSAP may be required.

·       For Gilda there was no adult safeguarding concern referred before she died despite her longstanding self-neglect. Devon Partnership Trust note two missed opportunities in particular: September 2019 when there was a care review and a change in her presentation and degree of self-neglect; and December 2019 when her self-neglect was increasing and she was declining input from the care provider. The latter may have been because no-one in DPT picked up on the significance of information that had been shared. An adult safeguarding enquiry was opened in January 2020 after her death because of concern about breakdown of communication within the care provider agency and with the brother, and possible risk to other service users. While Adult Social Care recognised that section 42 no longer applied to Gilda, as she was deceased, the enquiry needed to be pursued in case of risk to others. There was, however, delay in allocating the referral due to staff capacity, with timescales falling outside those set out in procedural guidance. The enquiry was closed in later March, having found no clear evidence of neglectful practice and with no clear benefit to be gained from an enquiry. Adult Social Care on reflection criticise this decision as risk to others was not explored with the provider to ascertain what protective measures were in place, and there appears to have been confusion about how concerns were progressed if the person had died.

·       In DD’s case, no safeguarding concerns were referred by agencies involved, or by her private cleaner/friend, despite her evident self-neglect. Her GP in particular had known her for a long time and saw her self-neglect as a lifestyle choice, and her friend stated that she had always lived that way. Self-neglect became normalised. Adult Social Care comment that this normalisation dispelled concerns, as did the GP’s knowledge and involvement. Following concerns raised by a taxi driver, discussions did take place about the need for care and support, Adult Social Care advising the GP that DD’s consent for assessment would be needed, a response that does not take proper account of section 11, Care Act 2014[13]. A Police welfare check took place but did not result in a ViST report. Even when a different GP, seeing the state of the home, talked again to Adult Social Care about care and support, this was not seen as requiring a safeguarding response. Adult Social Care acknowledge that the assumption of her living conditions being a lifestyle choice should have been challenged and a safeguarding enquiry should have taken place. This was particularly the case as concerns from the GP and taxi driver mounted and because she had lost the support of her friend due to Covid. They observe correctly that DD’s consent to referral, which she had withheld, would not be required in these circumstances.

[13] Section 11, Care Act 2014, allows consent to assessment to be waived where an individual either lacks capacity and assessment would be in their best interests or is experiencing or at risk of abuse and neglect (including self-neglect).

5.1.4.       Responses to reluctance to engage

All six individuals were to varying degrees reluctant to engage with agencies attempting to support them. Some good practice by agencies in responding to this is evident.

·       In BB’s case, the Police reflect that when involved with her in 2017 during a dispute with a neighbour an officer took time to engage with her and showed genuine concern, empathy and kindness, achieving an excellent community resolution. Police interventions were followed by completion of ViST reports. At the point at which short-term care home admission was thought necessary, Adult Social Care found a care home to which BB could take her beloved dog. Later, the care agencies attempting to provide care and support persevered in the context of very difficult home circumstances, lack of cooperation from BB and criticism from family members. Workers from the third agency did gradually gain her trust and built a good relationship with her.

·       During AA’s admission to hospital in June 2018, a wide range of clinicians, nurses and specialist nurses discussed his health with him on numerous occasions, attempting to ready him for surgery. There is a wealth of evidence of good practice by staff trying to engage with AA to encourage him to accept health advice related to compliance with his insulin regime, his diet and his smoking. The hospital discharge team practitioner discussed risks and consequences with him, listening to what he wanted. Once he returned home it is clear there was an increase in concern and staff spent long periods of time attempting to resolve this. They went above and beyond their roles at times to ensure he was clean and safe prior to leaving him alone.

·       EE had a candid relationship with the consultant managing his renal failure and dialysis, who regularly offered opportunities to make different choices that would have improved his situation. EE was aware of the risks of not attending dialysis and of non-compliance with medication. The community matron also built trust with him.

·       In DD’s case, her GP surgery knew her well and she had a strong relationship with one GP in particular who provided continuity in her care.

There were nonetheless shortcomings in four of the cases.

·       Responses to BB’s situation by Adult Social Care were primarily to deal with crises, rather than to undertake sustained, exploratory, preventive work. ASC reflect that her behaviour and her drinking were not considered in the context of previous events in her life, which were largely unknown and should have been explored. Her initial responses to care and support in March/May 2017 were taken at face value also. In June care workers’ calls were reduced to one per day due to her being drunk and uncooperative in the afternoon, without attempts to address this pattern and manage the risks arising. When in August 2018 a safeguarding referral was made of which BB was unaware, there was no attempt to discuss the situation with her and ascertain what her own desired outcomes might be, in contravention of the principles of making safeguarding personal. ASC identify key learning as being the need to take a proactive approach to service refusal, but recognise that in the light of service demand it can be easy to justify non-intervention and put risky behaviour down to lifestyle choice. BB’s son and daughter have also raised concerns to this review about how agencies responded to their mother’s reluctance to engage and their acceptance of her refusals to change her behaviour.

·       In EE’s case, the Serious Incident Report undertaken after his death criticises the lack of formal process for community staff when patients deny them access. While there is an informal process that staff follow if they have concerns about the person’s welfare, at the point of initial contacts with him there were no immediate concerns.  He did not attend planned gastroenterology appointments and it was unclear why this was. Follow-up of his non-attendance could have identified and resolved any practical difficulties.

·       Gilda had a history of disengagement from services when her mental health was deteriorating but the significance of her disengagement was not picked up in the final weeks of her life. When she chose not to engage with care staff, this was not seen as unusual. There was a policy of not challenging her fictitious relationships (for example that she had a husband) and she was therefore not challenged about her stated plans to be away at Christmas, nor was this explored with the mental health team, even when the brother confirmed she was not staying with him and that she was therefore probably alone. Her brother has drawn a distinction between not challenging her statements but also not believing them and continuing to visit. This had previously proven successful, with Gilda appreciating the contact made even when she had previously stated that she would not be at home. Indeed, her brother believes that Gilda was seen on 24th December when a driver delivered her medicine. A care worker who failed to gain access on December 27th was unaware of the previous care worker failures to see her prior to Christmas and when a care worker was ill on 30th December and could not visit, no attempt was made to contact Gilda.

·       In DD’s case, her reluctance to engage was seen as a normal pattern for her. This, along with her GP’s longstanding knowledge of her situation, led to minimisation of risk and assumption that the conditions of her home were normal for her. The referral to TDSAP suggests that attempts to obtain access were insufficiently assertive; when she declined to engage her case was closed by the Crisis Team after a multidisciplinary team meeting. Her discharge by Devon Partnership Trust in 2018 without consideration of care and support provision meant loss of a relationship with community support worker who had visited weekly and had a good rapport with her, and could therefore have assisted in securing her agreement to receive support.

5.1.5.       Responses to alcohol use

Use of alcohol was a key feature in two of the cases and both show some shortcomings in how alcohol use was addressed.

·       BB’s alcohol use was accepted by all agencies as an established pattern in her life and there is no evidence of proactive attempts to either explore its reasons or refer her for treatment.  The South Western Ambulance Trust learnt of the possible onset of Korsakoff Syndrome from discussion with BB’s granddaughter in 2017. SWASFT included this information on the safeguarding concern they raised and in details passed to the hospital, but there is no evidence that it was pursued. Risks of her driving while intoxicated were left to the family to resolve, causing the Police to reflect that prosecution and consequent loss of her licence at this point could have protected both her and the public from potential harm. Liaison psychiatry in May 2017 found evidence of confabulation and some paranoid thinking, with a mild/moderate degree of memory impairment possibly influenced by alcohol use. She was discharged from mental health at that point and no further exploration took place. Adult Social Care closed her case in June 2017 having reduced her support visits to mornings only due to the care agency reporting her to be drunk and uncooperative in the afternoons. Even at this point no attention given to exploring her alcohol use. GP records note her excess alcohol intake, but alongside a regular pattern of not wishing to engage. North Devon Healthcare NHS Trust community nurses were aware of Mary’s alcohol intake – she would ask the nurses to buy alcohol for her, which they declined to do. She told them she was drinking because her dog had died and also mentioned an old boyfriend, whom she no longer had contact with. There is no record of referral to drug and alcohol services being offered. The Trust reflects that there can be a failure to understand the behaviour of people who are alcohol dependant and the impact of alcohol on their decision making.

·       In FF’s case, alcohol had been a longstanding feature of his life, with frequent hospital admissions for alcohol-related incidents and health complications. Management plans involved support from Alcohol Anonymous and social care, but it seems the drivers for his alcohol use were not well explored or understood, the focus remaining on helping him manage its effects rather than its cause. Although he received comprehensive neurological rehabilitation following his subdural haematoma, his eventual discharge from hospital in September 2020 took place without the supports that he had been assessed as needing being in place. The neurological unit referred him to the Community Mental Health Team (CMHT), requesting assessment and ongoing management of his alcohol excess and possible underlying Korsakoff’s or alcohol-related brain injury, but the referral was declined by the CMHT, who instead suggested he be referred to Drug & Alcohol Services. There is no evidence that this referral took place.

5.1.6.       Hospital discharge

In three cases, hospital discharge was a pivotal episode in which good practice can be observed.

·       In BB’s case, discharge from hospital in May 2017 was followed by good follow-up from the Rapid Intervention Team who provided twice daily care for 7 days (although BB resumed drinking and did not accept care). The GP also followed up with a home visit and Liaison Psychiatry undertook a joint visit with Adult Social Care, who arranged care and support and installed a key safe to facilitate access.

·       In AA’s case, Adult Social Care and Housing worked proactively on discharge plans, initially liaising to arrange deep-clean services and adaptations, and subsequently (when it became clear AA could not return to his previous accommodation) offering alternatives for short-term care while awaiting a new tenancy. The hospital discharge team practitioner undertook holistic assessment of his housing and support needs, communicating effectively with a range of agencies. She was proactive in escalating requests for urgent continence assessment and supply of pads before discharge. She also considered his mental capacity, referred him to Liaison Psychiatry and asked nursing staff to complete bowel charts for review and consider a possible move to a community hospital. There was a focus on self-determination and person-centred approaches to supporting AA’s understanding of the challenges he might face at home and to manage his needs with respect and dignity.

·       In FF’s case, discharge planning involved liaison between the neurological unit, Adult Social Care and the housing provider and a clear plan established. Adult Social Care have identified accurate records, persistent liaison with others, good awareness of policies and good support from managers.

There were nonetheless some shortcomings during these hospital discharge processes.

·       BB was readmitted to hospital two days after her initial discharge, which had arguably been an unsafe discharge given her high levels of risk related to self-neglect and the absence of any care and support in place.

·       AA’s safe discharge was severely compromised by problems relating to liaison between the hospital and the community bowel and continence support service. These are explored in further detail in a later section of this report, but it is important to recognise here that the outcome was an absence of suitable continence products that compromised AA’s hygiene, health and dignity during the final weeks of his life.

·       RB’s discharge plan was frustrated by the lack of availability of the requested services – reablement and community mental health – or of any suitable alternatives to support him post-discharge. The safety of his discharge in these circumstances was disputed by the housing provider, an objection that was overruled in the context of FF’s own clear wish to return home. When alerted to his decline the GP took several days to arrange a visit by the community matron, which became the visit at which he was discovered unresponsive. He therefore had not been seen by a healthcare practitioner before he died.

·       Gilda’s brother is critical not so much of her final hospital discharge but of the failure to provide a care package that safeguarded her, based on her consultant’s concerns that she would not cope at home without very close daily monitoring.

5.1.7.       Attention to fire safety

·       Fire was a significant element of the circumstances in which BB died. The Fire & Rescue Service made a timely response to requests for home fire safety visits, providing fire safety advice and smoke detectors following referral from the South Western Ambulance Service in 2017. Care workers from September 2017 onwards reporting concerns about the gas cooker being used as a source of heating, showing good awareness of risk. The Fire & Rescue Service attempted a further home visit in November 2019 following referral from the care agency with concerns about overloaded sockets, use of portable heaters and alcohol use. They were not able to gain access, however, as BB was receiving personal care at the time of their visit, which was to be rearranged but was overtaken by BB’s death.

·       Fire safety concerns, however, had still not been resolved before her death, meaning that known risks were not effectively managed. The Fire & Rescue Service have reflected that although it would have been a departure from standard practice, there may have been an opportunity to enquire as to whether the smoke alarms in the home were working, or to ask the carer to test them with the intention of returning at a later date to carry out a full visit. The Service is currently reviewing this overall process. They also note that during their earlier visit in 2017, the Home Safety Technician did not record any detail in the free text boxes on the database. Use of these would have allowed the technician to record what specific areas of concern they witnessed during the visit and to note all the advice given to BB. It is not therefore possible to ascertain what advice was given at that point.

5.1.8.       Liaison with family

Liaison with family members took place in three of the cases, and some good practice is evident, along with some shortcomings.

·       In BB’s case, South Western Ambulance Trust liaised with her family during acute episodes, including raising concerns about BB driving under the influence of alcohol. Adult Social Care discussed with BB’s family the need for cleaning and attention to the gas boiler. Once care and support was in place, BB’s daughter was in frequent contact, often raising concerns about aspects of the care and support being provided. Adult Social Care paid due attention to her views, on one occasion convening a meeting between the care agency and the daughter to set out expectations and on another changing the care agency at her request. The care agencies themselves had frequent contact with the daughter about supplies of food, cleaning materials, alcohol and activities they undertook with BB. Adult Social Care also liaised with her in November 2019 over the need for adaptations that might make it possible for BB to live with her, although BB died before further discussion could take place. BB’s son, however, has reflected that through participating in this review it has become apparent how much more was happening in his mother’s life than the things he knew about at the time. He has requested that agencies be more be proactive in liaising directly with all family members and in engaging them overtly in risk management work.

·       AA’s ex-partner was involved in his care, and initially alerted the GP to AA’s level of self-neglect in June 2018. She subsequently participated in plans for his discharge and offered to support him in living independently. AA’s mother was also in contact with ASC during the discharge planning process – she expressed concern that her son might have ‘given up’. She does, however, feel that she was not kept informed about the decline of the conditions in which he was living after his hospital discharge, and was shocked and angry when she visited his flat after his death. His loss has caused her acute and ongoing distress; she remains in contact with the TDSAP about this SAR process and is insistent that changes to practice in similar situations must take place.

·       In Gilda’s case care provider staff, with her consent, kept in touch with her brother. The local authority also liaised with her brother after her death over his concerns about the level of monitoring of her physical and mental health and her medication, and the suitability of her accommodation. However, Gilda’s brother has expressed several concerns. When he provided information, he does not believe that this was always acted upon. He has also experienced “wide variation” in how practitioners perceive patient confidentiality. Some practitioners would not talk to him; some would, whilst others insisted that his sister should also be present. He also reflected that he was not told that information, which he believed he was giving in confidence, might under certain circumstances be disclosed. On one occasion, he knows that information he had assumed would be confidential was disclosed as part of the documents for a mental health tribunal hearing.

·       In DD’s case, however, it appears there was inconsistent knowledge about her family connections. The GP has stated that she had no known relatives but University Hospitals Plymouth (where she died) gave updates on her condition to her half-sister.

[12] As requested by the TDSAP Case Review Group, a briefing note on executive function in the context of mental capacity assessment is provided at Appendix 3.

5.2.   Domain B: Interagency working – How practitioners from different agencies worked together

5.2.1.       Information sharing

Sharing of information is a key element of good interagency working. In five of these six cases, some good practice can be identified.

·       In BB’s case there were communications from the gas utility company to the Police and from the Police, Adult Social Care and South Western Ambulance Service and the pharmacy to the GP. The GP reflects positively on the communication pathways that existed between agencies and the Police reflect that the level of detail contained in the ViST following Police contact with BB in 2016 enabled the Central Safeguarding Team to make an appropriate and lawful decision to share information about BB with her GP despite no consent to do so.

·       In relation to AA, RD&EFT reflect that in general there was good communication demonstrated between the multiagency teams involved in AA’s care. Concerns were escalated appropriately regarding his low mood, concerns for his welfare during missing episodes and concern under the Care Act that his self-neglect was in fact a risk to his life and warranted a safeguarding referral.

·       In EE’s case the dialysis renal team shared their concerns with EE’s GP.

·       In respect of Gilda, when her brother told the care agency of his concerns about Gilda’s declining mental health, the agency contacted Devon Partnership Trust. Adult Social Care note some good information-sharing and cooperation between DPT and ASC.

·       In DD’s case, a number of agencies liaised with the GP – Adult Social Care when receiving the first referral from a taxi driver, the pharmacist when blister packs were not collected, the mental health team, ambulance service and University Hospitals Plymouth when she was admitted to hospital in April 2020. DPT reports that historically the GP shared physical health review information with the team treating her mental health.

There were, however, some significant gaps in information-sharing.

·       In relation to AA, Adult Social Care delayed informing the hospital ward that there would be a delay in his care package becoming available, by which time he had discharged himself. This meant that the checks on him that the ward initiated through the Police and South Western Ambulance Service were conducted without the knowledge that he would have no support. Following his discharge to his new accommodation, it was only after an episode of faecal incontinence in a communal toilet that his housing provider, having contacted Adult Social Care for advice about support services, learnt the full extent of his circumstances. These had not been declared on the housing application form. The provider has reflected that with full information they would engage proactively with other professionals to monitor self-care, and carry out regular visits to support the individual in maintaining their tenancy.

·       In Gilda’s case, the lack of successful contact with her by care workers over the Christmas period was not reported by the care provider to Devon Partnership Trust or to any other agency as it was not seen as urgent, despite the noted deterioration in her mental health in the preceding weeks. In addition, not all care provider staff knew of the key safe and its code and therefore did not attempt entry by that means.

·       In DD’s case the GP observes that the Police did not share details of their welfare visit to her in April 2020.

5.2.2.       Interagency referrals

At certain points in some cases there is evidence of good practice in agencies raising referrals to other agencies to meet perceived need or risk.

·       In BB’s case, in 2017 South Western Ambulance Service summoned the Rapid Intervention Team and raised safeguarding concerns for self-neglect and alcohol use. The GP referred BB to mental health services. In 2018 the ambulance service made a referral for a Careline pendant and 111 raised a safeguarding concern which, while not progressed to safeguarding enquiry, was logged for Care Act assessment, including a referral for falls assessment.

·       EE’s GP referred his health and social care needs to community health.

·       DD’s GP referred her to Adult Social Care once she had given consent for that to take place.

There were, however, some omissions and missed opportunities.

·       In 2018, the community matron and falls assessment nurse intended to refer BB to Adult Social Care but don’t appear to have done so. The matron discussed it informally with social service colleagues in the office, who said they knew BB, so no formal referral was made. There is no evidence that district nurses considered escalating concerns when faced with increased risks and deteriorating conditions in her home. At various points, safeguarding appears not to have been pursued because she was ‘open’ to care management, yet care management was not managing risk. In 2017 there were some potentially serious environmental health concerns, in that rats and animal faeces were found in the property. Adult Social Care reflect that at this point they should have involved or at least consulted environmental health colleagues. In September 2019, when the district nurses had concerns about a neighbour’s report of young men spending time in BB’s home, they were advised by their line manager not to referred this on as safeguarding for reasons that had no foundation. South Western Ambulance Service did raise concerns but have noted an absence of feedback on what was done in response to the self-neglect referrals they made. They comment that they receive just 6% feedback on all safeguarding referrals submitted to partners across the Southwest region of operations. Based on the average length of service and average number of referrals submitted, this equates to an average clinician receiving feedback from a safeguarding referral just once in their career, affording no opportunity for them to develop understanding of interagency safeguarding practice.

·       In DD’s case, referrals were not made because of her known reluctance to give consent. Adult Social Care have reflected also that when receiving referrals, such as here from a taxi driver, practitioners must take care to record personal details so that future contact can be made if necessary.

·       In AA’s case there was a significant breakdown of communications about a referral for continence assessment prior to his discharge from hospital, resulting in an absence of suitable products in the period leading up to his death. This arose from errors of information-sharing, application of standard procedure when something different was needed, failure to provide the correct address, lack of timely progress of the referral, failure to respond to a follow up referral, and barriers between hospital and community continence services provided by two different Trusts, each with their own domain of operation. One agency has described this as a cumbersome and inflexible system full of holes that a discharge process can drive a coach and horses through.

o   The Adult Bladder and Bowel Care Service (ABBCS) at North Devon Healthcare NHS Trust, to which the referral was made, is a primary care service and does not undertake in-patient assessments. Their response was therefore their standard response – to send a questionnaire for AA to fill in. But it was sent to his home address (even though he was an in-patient) and in fact to the wrong address, because his new address hadn’t yet been updated on the TrakCare system. (There is also some uncertainty about whose responsibility it was to do this – it wasn’t done a week after his self-discharge.)

o   The service asserts that the referral information in the original ward referral was incomplete. No mention was made of AA’s use of incontinence pads, community services or the need to provide pads to him on discharge. Although it did state that he had a history of noncompliance and missing appointments it indicated there were no safeguarding concerns.

o   There was no liaison between the ABBCS and the ward. ABBCS asserts that had the ward contacted them to discuss assessment or provision of products prior to AA’s discharge they would have signposted the ward to the secondary care Bowel and Bladder Care Team within RD&EFT and/or advised on information the ward could provide to facilitate a timely assessment for AA. RD&EFT similarly note the absence of communication at this point, but see it as ABBCS’s responsibility to contact the ward on receipt of the referral to discuss how it should be taken forward.

o   The ABCCS has no record of any contact from the community nursing team, community matron or other healthcare professional following his discharge to enquire after or escalate the referral, raise concerns, ask for advice or enquire about the provision of products.

5.2.3.       Joint working

Information-sharing and referrals are of course only part of an effective multiagency strategy for responding to self-neglect. It is crucial to establish and coordinate a shared strategy in which the contribution of each agency is understood and monitored by a lead professional and where practitioners can collaborate in joint visits or consultation about the circumstances they encounter. There is some evidence of this in some of the six cases.

·       In BB’s case, the Fire & Rescue Service and Adult Social Care undertook a joint visit following concerns about the home circumstances being raised by South Western Ambulance Service. Devon Partnership Trust found evidence of robust liaison and joint work by Liaison Psychiatry and the Older People’s Mental Health Service with Adult Social Care, the GP and clinicians at North Devon Hospital.

·       In relation to AA, once he had consented to a transfer of housing, there were regular communications and joint work between Adult Social Care, the hospital ward, Exeter City Council Housing Department and Occupational Therapy.

·       In FF’s case there was good interagency involvement following a safeguarding concern being raised, which led to the social care practitioner and housing support worker working closely together following the safeguarding enquiry that they carried out. They also alerted the GP to FF’s confusion, resulting in referral to Neurology and the involvement of the community matron. The hospital he attended for his neurology scan transferred him to RD&EH due to concerns about his presentation and he was quickly transferred to Derriford Hospital for neurosurgical assessment. There is evidence of extensive liaison between Devon Partnership Trust Psychology, the GP, the social worker and the RD&EFT clinical team.

·       In EE’s case there was ongoing dialogue between the GP and specialist services, with regular communications and shared care management plans.

·       With regard to DD, Adult Social Care reflect that interagency working was timely and responsive, with DPT also commenting on good joint working with ASC by the Older People’s Mental Health Team.

Nonetheless there are observable shortcomings in joint working also.

·       In BB’s case, Adult Social Care reflect on limited joint working with the GP, and also on miscommunications between the social care assessor and ward staff during her hospital stay in 2017. The ward staff had questioned BB’s capacity and the social care assessor had undertaken to carry out a mental capacity assessment before her discharge. The ward, however, discharged her before this had taken place.

·       In respect of FF, joint working broke down when it became clear that the support services required under the discharge plan were not going to be available but FF was still discharged. The disagreement, which resulted in the housing provider withholding FF’s house key, had to be escalated to senior level for resolution.

·       In Gilda’s case, there was no challenge when Adult Social Care reduced the number of hours in her care package, despite knowledge of her long history of self-neglect.

·       In DD’s case, liaison between the GP and Adult Social Care focused solely on the question of consent for a care and support needs assessment rather than considering whether DD had mental capacity or whether her circumstances warranted a safeguarding enquiry. The GP acknowledges that a risk management meeting could have agreed a plan and contingency arrangements and Adult Social Care reflect that no one agency took ownership of an escalating situation.

5.2.4.       Case coordination

This absence of case coordination is evident across five cases.

·       In BB’s case there is no evidence that any one agency was coordinating responses to all elements of risk. No one professional appears to have recognised the need for a coordinated approach.

·       In AA’s case, when the community matron’s safeguarding referral in December 2018 did not proceed to enquiry, there was no attempt to convene a multiagency meeting to discuss strategy for risk management, and no apparent consideration of the need for legal advice by any agency. Adult Social Care have acknowledged that given the extreme risk to AA’s life a multiagency meeting should have been convened at the point of his self-discharge, to ensure all risks had been identified, that management measures were in place and that all agencies were clear about roles and governance in this case. In such extreme cases, legal advice makes an important contribution to identifying a forward pathway for intervention.

·       For FF, a discharge planning meeting reached clear agreements about what support was necessary, but when the necessary arrangements for services could not be made the discharge went ahead without reconvening the system and without replacing the failed plan with an alternative and shared strategy.

·       In EE’s case, the community matron sent a photograph of the state of his accommodation to the GP and information arising from the visit was clearly available but there does not appear to have been any coordination of response to the self-neglect that was found or to his evident health and social care needs.

·       In respect of DD, the GP comments on the absence of a contingency plan should her mental health decline once discharged from mental health services and that arrangements for the GP to be alerted to any non-delivery of medication needed to be more robust.  While liaison took place between the GP and Adult Social Care a professionals’ meeting does not appear to have been considered and the GP surgery was unaware that a joint visit between ASC and the Older People’s Mental Health Team was planned. ASC is critical that despite information-sharing and communication between services there was no clear action plan, or understanding of roles, duties and responsibilities, and no clear ownership, either shared or by a single agency.

5.3.   Domain C: Organisational features – How organisational features and systems influence practice

When seeking to answer the question ‘why did this case unfold in this way?’ the answer is often to be found within features of organisations that have adversely affected practice. These can range from external pressures and resource constraints to the nature of systems internal to the organisation. Such features can be observed in the six cases reviewed here.

5.3.1.       Pressures from levels of demand and staffing

On a positive note, two agencies were clear that their service was not under any undue pressure at the time of their involvement. The care agency providing services to BB prior to her death has reported that their staffing was settled, with established, experienced care workers. There was no shortfall of staff and care workers attending BB were happy to do so, despite the challenges she posed. Carers were informed of prior issues before meeting her and were trained to record and report any concerns immediately. They were accompanied by a senior carer for support on the first meeting and had access to a manager for support at any time. Similarly, University Hospital Plymouth, where DD died, has reported no resource issues affecting services at the time. Other agencies reported a range of different pressures on their services.

·       In BB’s case there were considerable pressures on staffing at the time when in October 2018 BB’s case was allocated for a reassessment that did not take place. Supervision notes for the social worker concerned show her to have been under considerable pressure as the only qualified practitioner in the team; she felt overloaded and unsafe. Adult Social Care reflect that the increasing demands on Adult Social Care mean that long-term work is no longer possible; the focus is on stabilising a situation before moving on. They recognise that this does not provide the continuity and ability to build the kind of relationship that could have made a difference in BB’s case.  North Devon Healthcare NHS Trust have similarly raised the issue of staffing. Until October 2018 they had only one Adult Safeguarding Lead who had no admin support, and a risk was placed on the Trust ‘Risk Register’ because of an identified lack of staff knowledge around Mental Capacity Act 2005.

·       In AA’s case the community matron reflects that the team received the referral at an extremely busy time when the team were short-staffed and that visits to AA were long and therefore time-consuming.

·       In Gilda’s case, where Gilda remained without an allocated care coordinator for seven months prior to her death, DPT has referred to difficulties recruiting suitable qualified clinicians.

·       In relation to work with FF, pressures in the team prevented allocation to a qualified practitioner.

5.3.2.       Lack of suitable resource

At times services were compromised because suitable resources could not be found.

·       In BB’s case, although one of the care agencies involved tried to provide continuity with the care workers, organisational restraints and pressures on the service (as a scarce resource) hampered these efforts.

·       The fact that AA was medically fit for discharge but had no viable tenancy exposed a shortage of facilities for younger-aged, mentally acute but medically complex people. In relation to his post-discharge support, no care providers were available to deliver the care and support package agreed so the Rapid Response Team had to extend their involvement. It is likely also that the challenges AA posed in relation to the care he needed would not have been an attractive proposition for care providers.

·       RB was discharged from hospital without the support services identified as necessary being in place. When reablement services concluded he did not fit their criteria because their work was to support people in meeting their goals, whereas he was already meeting his, the Urgent Community Response Team had no capacity to support his discharge. The Reaching for Independence Team indicated their work was with people who have goals to set to build their independence, they were not a hospital discharge support service and although a referral could be made, any support would normally be provided remotely and they would not provide twice daily support on a regular basis, nor would it be provided if FF was under the influence of alcohol.

·       In Gilda’s case, Devon Partnership Trust refer to vacancies in the Community Mental Health Team that limited capacity in the six months prior to her death – a risk that was included in the Directorate’s risk register. Gilda remained without a community psychiatric nurse during this period and the Trust did not respond either to notification from the care agency that her mental health was deteriorating. Gilda’s brother has identified that the extensive care package assessed as required prior to her final hospital discharge could not be provided.

5.3.3.       Agency systems

There were a number of challenges posed by various organisational systems within agencies.

·       Safeguarding triage: In BB’s case, the safeguarding referral made in August 2018 was received into a Safeguarding Hub based in a Care Direct Plus Centre. Triage determined it did not meet Section 42 (Care Act 2014) criteria but required a care and support needs assessment. Adult Social Care question how appropriate this system is. No contact was made from the Safeguarding Hub to the community team to discuss the case, as there was no current allocated worker. Yet with awareness of BB’s history, risks and lack of engagement it could have appropriately progressed to an enquiry, rather than remaining on the assessment waiting list for a prolonged period of time. In Gilda’s case, where the section 42 enquiry was delayed due to pressure of demand, Adult Social Care question whether weekly management oversight of the waiting list is adequate given potential fluidity in circumstances.

·       ViST sharing: Also in BB’s case the Police comment that ViST policies and procedures were adhered to in terms of grading reports (those relating to BB were graded Amber) and determining when to share with other agencies and when not to. They reflect on the criteria for sharing ViSTs, drawing attention to the volume of reports submitted and the need to balance the value of sharing of professional concerns with the avoidance of information overload, making it impractical to share all those submitted. Once other agencies have been made aware of concerns, it might not seem proportionate to share further alerts. However, this does not allow other agencies to correctly judge the volume or frequency of concerns noted by officers in the field.

·       Systems for recording patient details: In AA’s case, his patient record on TrakCare did not contain his correct address, leading to a letter from the Bowel and Bladder Care Service being sent to his former premises. TrakCare is the Electronic Patient Record system that holds patient demographics, clinic appointments and other attendances. The NHS National Spine allows information-sharing through national services such as the Electronic Prescription Service, Summary Care Record and the e-Referral Service. Access is strictly controlled and given to clinical and administrative staff depending on role. GPs also have access and hold responsibility for keeping details up to date. It appears that in AA’s case TrakCare could not be updated until his address had been updated on the National Spine. NDHT have reflected that it would be helpful if TrakCare was able either to permanently accept demographic changes or to flag that there were changes forthcoming while awaiting update to the Spine.

·       Dual diagnosis interface between services: In FF’s case the Community Mental Health Team did not accept a referral. This raises a familiar issue of the interface between services for mental health needs and those relating to alcohol use. Devon Partnership Trust note that referral criteria for access to community mental health require that the patient has/may have an underlying severe or enduring mental illness and that in the absence of evidence that this was the case for FF the decision to decline the referral was appropriate. Yet FF had not been seen by liaison psychiatry for 10 months, with much that had occurred in the intervening period, as well as the referral containing a clear request to pursue Korsakoff’s investigations. As RD&EFT comment, mental health support and Korsakoff’s investigation were essential. In this context, the threshold for access to the service appears narrow. DPT recognise that the learning from FF’s case may well reflect that from many other Safeguarding Adult Reviews both nationally and locally for individuals living with a substance or alcohol difficulty without evidence of an underlying significant mental disorder. They point out that such individuals cannot be mandated through any legal framework (while they have capacity) into engaging with substance or alcohol misuse services and may continue to make unwise decisions. They may not meet the threshold for adult mental health services unless they meet the threshold where either the Mental Health Act 1983 can be used or their mental health deteriorates to such a point where they do not have capacity – for example where they have Korsakoff’s. Yet FF was referred precisely for Korsakoff’s assessment.

·       Communications within an agency: In Gilda’s case, there was a breakdown of communication within the care agency, notably over previous unsuccessful visits and the existence of a key safe to gain entry. The care provider reflects that following a change of ownership staff were insufficiently aware of policies and procedures.

·       Guidance on post-death safeguarding enquiries: Also in Gilda’s case, Adult Social Care observe that there is no Devon County Council guidance on expected practice for dealing with a safeguarding concern raised for a person who has died.

5.3.4.       Supervision and management oversight

·       In BB’s case, Adult Social Care reflect that supervision did not keep close track of her case during the latter half of 2018, following the safeguarding concern, and that supervision notes were of poor quality.  At this time only one qualified social worker was present in the team, a risk that was raised with senior management, resulting in agreement to hire agency staff. However, it was not possible to source a practitioner with sufficient skill and experience, and the existing qualified practitioner remained under considerable pressure, doing the best they could in extremely difficult circumstances. North Devon Healthcare NHS Trust observe that there is no evidence of supervision or advice being sought outside of the immediate health and social care team working with BB. Such advice could have highlighted the need to consider and take action on the risks associated with BB’s extreme self-neglect.

·       In Gilda’s case the care provider acknowledges the absence of a clear process to ensure staffing cover and contact with service users and note that staff who could not make contact with Gilda did not refer to the Absence Management policy. There was limited senior management capacity at the time due to annual leave. Gilda’s brother has reflected that, in his view, there was no management oversight in respect of her mental health, physical health and care and support needs.

·       In DD’s case, Adult Social Care acknowledge the need for both formal and informal supervision to focus on understanding self-neglect and when it triggers safeguarding responsibilities. On occasion there was no discussion with the team manager after receipt of significant information (for example the discussion with the GP about the conditions in her home).

5.3.5.       Recording

Agencies have made a few observations about the quality of recording.

·       RD&EFT comment that in AA’s case documentation was excellent overall, clearly evidencing offers of care that were made to AA and the rationale for action being taken or not taken.

·       In DD’s case University Hospitals Plymouth note good recording also. Adult Social Care in contrast note the need for clearer case records. Their records contain no specific reference to mental capacity or to whether any consideration was given to adult safeguarding in relation to her self-neglect.

·       In BB’s case, Adult Social Care observe that Care First messages are deleted once 500 are reached, making it difficult to take a historical perspective by exploring the reasons for matters such as delay in reassessment of needs.

5.3.6.       Staff support and training

The impact on staff of working with self-neglect should not be underestimated, all the more so when outcomes are tragic, as in the six cases reviewed here. Good practice can be noted in three cases.

·       In AA’s case, the ward matron reported that AA was rude to staff and his behaviour was often so non-compliant that he could no longer be nursed objectively. Ward staff were split in their way of coping with his behaviour. Some colleagues felt the RD&EFT zero-tolerance policy of abuse should be adhered to, while others believed AA’s health needs warranted their acceptance of the abuse in order to provide the care he needed. Support was given in team meetings, safety handover and supervision by peers, matron and senior nurses. RD&EFT safeguarding team offered support to the community healthcare team on several occasions for advice prior to submission of their safeguarding concern. Staff were supported by senior staff and peers, and visits were often conducted in pairs. After AA’s death, a round table meeting for community healthcare staff was held to discuss the circumstances and to offer support to the staff involved.

·       In FF’s case RD&EFT records indicate good multidisciplinary and multiagency working as well as management support being sought and provided.

·       In BB’s case, the Fire & Rescue Service observe that they provide trigger point awareness to partner agencies, highlighting fire risk concerns that will be encountered during day-to-day work and providing information on thresholds for referral for home safety visits. They observe that the care agencies who referred BB to FRS had received this package of training, providing evidence that it enhances partner agencies’ understanding of the preventive role of FRS.

·       In DD’s case Adult Social Care note the need for training on self-neglect, in terms of both staff awareness and triggers for safeguarding. While only mentioned in respect of this case, it is clear from evidence in the other cases reviewed that staff across a range of agencies require better understanding of self-neglect and its risks, and of approaches to working with it in practice.

5.3.7.       Covid-19

Finally, it is important to note that three of the individuals in this thematic review died during the Covid-19 pandemic, and therefore to consider what impact those circumstances may have had on how agencies were able to work with them. Impacts have been noted in two of those cases.

·       In respect of EE, the GP notes that the COVID-19 pandemic was and continues to be a significant element in the disruption of care. Despite this, records show an ongoing engagement with EE in terms of his medical care. It is clear, however, that the restrictions imposed by the lockdown rules did not help. The lack of face-to-face engagement due to social distancing measures possibly escalated the deterioration and meant that concerns regarding his social situation were raised rather late. Against this, the GP notes that there is a clear pattern of decline in his condition which it appears would have been hard to stop entirely, even outside of the pandemic.  The Serious Incident Investigation report notes that it is unclear how patients who were vulnerable or had been advised to shield (as EE was) and who may have been reliant on informal support networks prior to lockdown had been risk-assessed regarding any additional support they may have needed during this period of time.

·       In DD’s case, Covid had a number of implications for her care. Her private cleaner was shielding and therefore not attending her home and she was also less visible to her neighbours. Her GP was not visiting and she was not on the list of ‘virtual ward’ patients as she was not receiving support from a recognised group or agency. Meetings in the surgery were not taking place in the usual manner either. Adult Social Care have similarly reflected that staff discussions were not taking place in the office as they might usually, and that as this was happening right at the beginning of Covid the logistics of staff communications were still challenging. When attempts were made to secure replacement support for her, following the GP’s and the taxi driver’s concerns, the local care provider advised that because of the pandemic they could not enter a property currently and would only be able to provide shopping and telephone contact. Devon Partnership Trust note the impact on the availability of clinicians (although DD herself was seen after she was referred by the GP in April 2020). Covid was also directly implicated in DD’s death as its cause was Covid pneumonia.

5.4.   Domain D: Governance – How the Safeguarding Adults Board or Partnership exercises its multiagency leadership role

5.4.1.There were no mentions in the case documentation reviewed of the role of the TDSAP in supporting practice in the six cases. It is important, nonetheless, to consider how the Partnership exercises its governance function in relation to multiagency working in self-neglect.

5.4.2.The TDSAP fulfils the function of a local Safeguarding Adults Board (SAB) for both the unitary authority of Torbay and the county of Devon. Local authorities have a statutory duty (Care Act 2014, section 43) to establish a SAB, with the Board’s statutory function being to help and protect adults in its area who have care and support needs, are experiencing or at risk of abuse and neglect (including self-neglect) and are unable, because of their care and support needs, to protect themselves. It must achieve this by co-ordinating and ensuring the effectiveness of what each of its members (partner agencies) does.

5.4.3.TDSAP has exercised leadership in relation to self-neglect, publishing guidance on self-neglect and hoarding alongside its more general safeguarding procedures and other guidance on aspects of safeguarding practice. The current self-neglect guidance is dated August 2020, so post-dates the deaths of the individuals in this thematic review. To clarify, therefore, is the question of what guidance was in situ during the period 2018-2020 when the work with them was being undertaken.

5.4.4.A further question relates to how well embedded guidance is in the practices and policies of TDSAP’s partner agencies. Even if guidance was in place, the fact that in a number of these cases self-neglect was not referred into safeguarding, or if referred was triaged out of enquiry status, perhaps signals a need for a higher level of awareness of both self-neglect and what measures should be taken to address it. It is not uncommon for policies and procedures to gather dust rather than to become a living resource in the day-to-day work being carried out. A further clarification required, therefore, is what work TDSAP has undertaken to disseminate its guidance and to monitor its use in practice.

5.4.5.In addition to its statutory function as set out above, the Partnership has under section 44 of the Care Act 2014 a power to carry out a review of any case that comes to its notice. In respect of certain cases, where specific grounds are met, the review becomes mandatory[14]. It is relevant therefore to consider how the Partnership has met governance requirements in terms of carrying out this review. The SAR considers cases in which the deaths took place over a two-year period, the first in December 2018 and the last in September 2020. SAR referrals were received between January 2019 and November 2020. The decision to carry out a thematic SAR was taken on 8th February 2021 and the independent reviewers approached in May 2021. The volume of material under review across the six cases, plus pressures on agencies creating (in one case) significant delay in responding to requests for information, has meant an extended period of review also.

5.4.6.It is not clear why decisions on the earlier SAR referrals, particularly those relating to AA (January 2019) and BB (December 2019), both of which were made shortly after their deaths, waited until 2021 for a decision on whether a SAR was warranted. Indeed, for all cases there will have been a considerable passage of time between the events that took place and the learning that the review can identify, and even longer before that learning can achieve changes in practice. In AA’s case, the ongoing delay in extracting learning from the tragedy of his death is a source of acute distress to his mother, who by the time this review concludes will have waited little short of 4 years. Against this, it is certainly the case that a thematic review covering a large number of cases provides an important window on recurring patterns in practice and themes within the learning, and so it has proved here. However, the TDSAP will want to review its decision-making and governance process relating to SARs in order to minimise delays in future reviews.

[14] The grounds are set out in section 1.1. of this report.

6. Learning Event

6.1.   A self-neglect ‘temperature check’ event was held to explore areas of strength and areas of practice requiring improvement. Using Microsoft Teams software, it was attended by practitioners, operational managers and senior leaders from across services and agencies in Torbay and Devon. Some of the 125 people who attended had worked directly with one or more of the individuals whose cases have been included in this thematic review. The event was conducted in a spirit of reflective and appreciative enquiry and the independent reviewers are grateful for the positive way in which those attending engaged in candid and constructive reflections.

6.2.   The event comprised two halves. First, the independent reviewers presented the themes they had extracted from the detailed information provided by the services involved with the six individuals. There followed discussion in breakout rooms and in the whole virtual meeting. In the second half the independent reviewers presented the evidence-base for working with cases of self-neglect, drawn from over 400 safeguarding adult reviews and from research. There followed two “fishbowl” conversations[15] facilitated by one of the independent reviewers: the first with a small number of practitioners and operational managers whose work involves self-neglect; the second with a small number of senior leaders who were responding to what they had heard. Other participants were asked to place comments in the chat. Thereafter, those attending had the opportunity in breakout rooms to comment on the themes and issues that had arisen. The event concluded with a final discussion in the whole virtual meeting.

6.3.   The analysis of learning that follows adopts the same format as the two halves of the temperature check event and organises the material into the same four domains that have been used hitherto.

Stage 1 of the learning event: Learning from the six cases

6.4.   The independent reviewers presented the themes emerging from their analysis. These are summarised in the first paragraph of each section below, then followed by comments received during the learning event, when those attending were asked to reflect on whether what had been presented was a recognisable portrayal of self-neglect practice in Torbay and Devon.

6.5.   After the presentation, those attending were asked to complete a short poll. 109 responses were received with the following result:

·       I can always achieve best practice in my self-neglect work: 0% (0)

·       I can achieve best practice in my self-neglect work most of the time 24% (27)

·       I often struggle to achieve best practice in my self-neglect work 73% (80)

·       I can never achieve best practice in my self-neglect work 1% (2)

6.6.   All themes from the emergent findings were recognisable and rang true for those present.

[15] So called because a small number of participants take part in discussion while observed by the main body of participants.

6.7.   Domain One: Direct practice – how practitioners engaged with the individual

6.7.1.Engagement (four cases). In terms of positive practice, the analysis found evidence of perseverance, expressed concern, empathy, relationship and person-centred practice. Some discussions with individuals had clearly been candid, demonstrating concerned curiosity. However, there appeared to have been insufficient focus on a person’s backstory and limited discussion of both the situation and the person’s wishes and desired outcomes, in line with the principle of making safeguarding personal. It appeared that longstanding knowledge of a situation could lead to normalisation and minimisation of risk. There was also uncertainty about how to response to DNAs and refusals of support/treatment. Noticeable was that cases were seen through a lifestyle choice lens.

Learning event participants recognised the need to understand the back story. The skill set that comes with trauma-informed approaches was seen as very valuable but, in a clear reference to workloads (see below), staff needed time and space for the work to understand the influence of a person’s experiences. In certain cases they felt it was important to acknowledge the impact of bereavement or to discuss end of life care. This had to be done working to the pace of the person concerned. In summary, spending time with individuals was key, working to understand and overcome barriers to engagement. In that context, less helpful was when services expected individuals to engage in accordance with agency time-limited expectations.

6.7.2.Thinking family (five cases). The thematic analysis found evidence of liaison and meetings with family members, involving them in planning. However, different agencies held different information about next of kin.

Participants expressed the views that neighbours and family are sometimes not seen as having expertise or knowledge of the person, meaning that families are not engaged. Caution was also necessary since an individual’s trauma might be linked to familial abuse or neglect. This area of practice was seen as challenging. Where people refuse to have statutory or third sector intervention they considered it should be normal practice to engage with significant others in that person’s life in order to try to gain compliance, but this takes time and is not possible given the enormous demand pressure on frontline practitioners. This links with agency pressures (see below).

6.7.3.Mental capacity (five cases). The thematic analysis found evidence of assessments, for example in hospital and by paramedics. However, there was also evidence that capacity was assumed, with missed opportunities to complete formal assessments. There was a lack of focus on executive functioning[16], and also challenges of completing assessment of fluctuating capacity, perhaps due to physical illness and alcohol-dependence. There appeared to be some uncertainty about the interface between the Mental Health Act 1983 and Mental Capacity Act 2005. There was concern about how to balance autonomy with risks from self-neglect and, noticeable again was that cases were seen through a lifestyle choice lens.

Participants expressed the need to understand how trauma impacts on mental capacity. They reflected that mental capacity assessments were not always robust but rather based on superficial conversations, for example in hospital settings where there are pressures around discharge. A view was expressed that there continues to be a reliance on the assumption of capacity, possibly because historical information is not known and the impact of self-neglect on capacity not considered. Self-neglect was often seen as life style choice when a person was considered to have mental capacity. In such instances, when decision-making is affected by background and life experiences, they recognised it was important to support these individuals better rather than using lifestyle choice as an excuse for lack of intervention.

They identified fluctuating capacity as a significant challenge, highlighting the need for joint working and clarity about which practitioner should take the lead in assessment. Finally, there was uncertainty about how to respond when someone was assessed as having capacity but was placing themselves at extreme risk. Even in situations where a person was assessed as not having capacity, some uncertainty was expressed about the powers available to practitioners.

[16] See Appendix 3 for further detail on executive function.

6.7.4.Safeguarding (six cases). The thematic analysis found some evidence of professional concerned curiosity and of concerns being raised with individuals. However, there were also missed opportunities to refer safeguarding concerns despite self-neglect and missed opportunities to conduct safeguarding enquiries as part of risk mitigation planning. Once again desensitisation and normalisation of risk was evident, with cases also being seen through a lifestyle choice lens. There was a reliance on care management involvement rather than concerns explicitly being addressed through a safeguarding pathway when the criteria in Section 42(1) Care Act 2014 were met.

Learning event participants acknowledged robust contingency planning as necessary, so that emergencies are considered before they take place. There were instances where individual practitioners had felt that a lack of consent to refer an adult safeguarding concern was used to justify a lack of action[17]. There needed to be a wider understanding by all partner agencies of the safeguarding process, with feedback given to referrers about the outcome of a referred adult safeguarding concern.

[17] Consent is not required in order to refer an adult safeguarding concern.

6.7.5.Responses to need (six cases). The thematic analysis found evidence of concerns about, and appropriate responses to, physical and mental health issues. There was evidence of hospital discharge planning and of worker continuity, provision of practical supports, appropriate referrals and relationship-based, compassionate practice. The documentation provided some evidence of practitioners understanding a person’s needs and wishes, and some concerns about how to respond to non-engagement. There were, however, missed opportunities to complete care and support assessments and/or care and health packages not in place when a person was discharged and/or discharge plans being frustrated by unavailability of services. There appeared to have been shortfalls in terms of lack of support regarding alcohol-dependence, and a lack of escalation of and responses to deteriorating health and/or home conditions.

No specific comments from learning event participants addressed this point, although later in this section there are more general participant comments about responses to need. It is also clear from within the documentary analysis that there was a recurring pattern of referrals being made or assessments requested but not being completed before the person died.

6.7.6.Responses to risk (two cases).  Agency documentation considered in the thematic analysis revealed concern that insufficient attention is given to alcohol-dependence and its impact on decision-making. Similarly that fire safety is not embedded in risk and care/support assessments.

Participants felt that some agencies are left out of the loop in terms of being involved in dynamic risk assessment. Housing staff sometimes felt like a lone voice and not valued for their expertise or contribution. Reflections included the need to recognise gradual deterioration in an otherwise familiar scenario. Different interpretations of risk were a factor complicating how services worked together.

6.8.   Domain Two: Interagency working – how practitioners from different agencies work together

6.8.1.Information-sharing (five cases). The thematic analysis found evidence of information-sharing, but it was inconsistent within and between agencies. Also evident was a lack of awareness of what some services were planning and insufficient understanding of roles of in-patient and community continence services, resulting in muddled hospital discharge.

Learning event participants expressed the view that decisions were often based on limited or partial information, and that uncertainties remained about when it is lawful to share information.

6.8.2.Inter-agency referrals (five cases). There was some evidence in the thematic analysis of referrals for care and support assessments and of adult safeguarding concerns. However, there were missed opportunities to refer for care and support assessments, with referral sometimes seen as pointless as an individual was not expected to engage. Sometimes safeguarding concerns were not referred as a case was open to care management. Also noticeable was an absence of feedback when adult safeguarding concerns are referred. Finally, not all services with a contribution to make were included, for instance environmental health.

Participants at the event recounted experiences of adult safeguarding concerns not being referred because this was seen as the responsibility of another service. Additionally, when to raise concerns and which agency is leading required clarification as high-risk complex individuals are often seen as ‘hot potatoes’.

6.8.3.Joint working (six cases). The thematic analysis found evidence of joint visits and regular communication between services, and also of care management plans. Shortfalls, however, included the absence of challenge or escalation of concerns during hospital discharge when no effective plan was in place, or when a care package was reduced, or when an adult safeguarding concern was not referred. In some situations it appeared that no service took control of a deteriorating situation, with missed opportunities for joint working, for example on mental capacity or adult safeguarding concerns.

Participants gave examples of positive engagement with the Fire and Rescue Service and with Environmental Health, enabling contributions to risk assessment and mitigation. However, not all agencies were necessarily aware of their potential contributions. Those attending spoke of improvements in collaborative working, including joint outreach visits. However, challenges remained, especially between substance misuse and mental health services. They felt dual diagnosis services should be provided alongside each other, not separately. Specialist services are only available if the person is “willing to engage”. This definition often translates to having abstained from alcohol use for a period of time. Other services are not accessible if support around alcohol dependency is seen as the primary need. A toolkit had been developed based on a Blue Light approach, with some training provided to support it, but this has not been universally taken up. Mental health services are not commissioned to “deal with” (as it was framed) alcohol dependence. This links with commissioning (see below).

They were in support of introducing regular self-neglect meetings under the auspices of safeguarding for regular monitoring and review, working to a lead professional. Put another way, there was broad support for the regular use of multi-agency meetings, akin to MARAC or MAPPA or Adult MASH meetings. The purpose would be to discuss high risk individuals, to remove some of the barriers to working with individuals who self-neglect and to ensure these individuals are not missed. One example of where such an approach might be beneficial was in cases when hoarding was seen as a lifestyle choice. This might result in court action and eviction, which could further traumatise the person. Meeting together, services could determine how to balance negotiated and imposed interventions and determine who would take the lead. They felt it was important not to overlook what third sector agencies and community organisations could offer.

6.8.4.Case coordination (five cases). In one case the thematic analysis found there appeared to be no process for communication between a GP and Pharmacy. There were instances when GPs were not consulted on discharge or contingency plans. There were missed opportunities to convene multi-agency meetings for risk management, for example when a discharge plan could not be realised, and generally a lack of coordinated response to self-neglect. Another shortfall was the failure to seek legal advice.

Participants agreed that it was important to get the right people round the right table at the right time. Otherwise, when agencies do not engage, one service or practitioner can be left holding the risk. When working collaboratively, practitioners and services also needed a shared understanding of available legal rules, providing a link to legal literacy (see below).

6.9.   Domain Three: Organisational features – how features and systems within organisations influence practice

6.9.1.Pressures on systems (four cases). The thematic analysis found that staff shortages and workload pressures were clearly impacting on allocation of adult safeguarding concerns and practitioners’ experience of safe working. There was a shortage of care providers, resulting in delays in providing packages of care, especially for complex cases. Pressures on Adult Social Care and other agencies meant that cases were closed rather than continuity and relationship-based practice being supported.

Learning event participants reported that the considerable pressures on services had resulted in challenges in adapting provision to meet the needs of complex and challenging cases. Demands on services were limiting the ability of practitioners to spend time building relationships of trust to overcome barriers to engagement. Demand had also led to greater emphasis on thresholds and on what services had been commissioned, reducing in some instances the creativity, flexibility and collaboration required to respond to complex and challenging scenarios.

They considered that workforce capacity and culture meant that the focus was not on long-term case management, when building relationships with individuals who might be complex and difficult to engage required longer-term work. Workforce capacity had also been impacted by significant challenges in recruitment and retention.

6.9.2.Agency systems (four cases). The thematic analysis showed that Police Officers appeared uncertain whether to share all concerns about adults at risk, especially when these concerns were repetitive. The interface between safeguarding hubs and community teams could be clearer regarding response to adult safeguarding concerns. Recording systems did not flag changes clearly enough. Mental health and substance misuse services did not work together consistently.

There were no specific comments on agency systems at this stage of the learning event, although they did feature prominently in the broader discussions during the second stage of the event.

6.9.3.Supervision and management oversight (three cases). From the thematic analysis it did not appear that supervision was routinely keeping track of cases and clearly recording decisions. Not all staff working with self-neglect receive regular supervision. Weekly screening of Section 42 concerns awaiting allocation was not seen as adequate. Not all care providers have processes to ensure staffing cover.

Participants felt that supervision was seen as essential to challenge any normalisation of risk and to explore supportively but critically how practitioners were viewing and responding to what they saw.

6.9.4.Covid-19 (two cases). The thematic analysis highlighted the impact the pandemic had clearly had on face-to-face engagement with adults at risk and, it appeared, on timely referral of adult safeguarding concerns and of practitioners seeking peer support. There appeared to be some evidence of a loss of focus on safeguarding on risk assessment when adults at risk lost informal supports.

Participants discussed how during the pandemic many agencies had changed their ways of working, reducing outreach and face-to-face visits. There was recognition that the virtual world meant practitioners were less available for some clients, with an accompanying need to ensure willingness to be flexible around client / carer need to enable engagement. Services had been and largely remained under pressure, which could result in tighter gatekeeping. Some had since returned to the way they had operated previously but some had not.  One positive had been the use of virtual multi-agency meetings, which had improved attendance but some of those attending felt that it would be beneficial to have a mechanism for understanding how agencies are now operating. A sense was also conveyed that post pandemic multi-agency core groups were no longer meeting when they had proved effective in sharing risk information.

Stage 2 of the learning event: Messages from the evidence base on best practice

6.10.   Learning from over 400 cases of self-neglect, which continues to be the most frequently reviewed type of abuse and neglect, has found common shortfalls across all domains. This learning, when applied alongside evidence from research on how positive outcomes are achieved, has enabled the development of an evidence-base for best practice, using the four domains around which this thematic review has been organised. That evidence-base was presented at the learning event and is summarised below, with comments from the two fishbowl conversations and break out room discussions embedded after each component.

6.11.   Domain One: Direct practice

6.11.1.What works in self-neglect is a person-centred approach that comprises proactive rather than reactive engagement, and a detailed exploration of the person’s wishes, feelings, views, experiences, needs and desired outcomes. This includes concerned and authoritative curiosity, characterised by gentle persistence, skilled questioning, conveyed empathy and relationship-building skills. When faced with service refusal, there should be a full exploration of what may initially appear a lifestyle choice, with detailed discussion of what might lie behind a person’s refusal to engage; frequently this is loss and trauma, and sometimes shame. It is helpful to build up a picture of the person’s history. Recognition and work to address issues of loss and trauma in a person’s life experience are important, paying attention to repetitive patterns. Contact should be maintained rather than the case closed so that trust can be built.

Practitioners in the fishbowl gave positive examples where they had been able to get to know a person, their back story and what was important to them. Building rapport was seen as a practice priority. However, it was also observed in one break out room that only 4 out of the 12 participants felt they would be supported by their manager to take the time needed to build a meaningful relationship or hold the case for a prolonged period of time. There are organisational pressures to complete a task and close the case. This clearly links to domain three (see below).

Senior leaders in their fishbowl explicitly recognised the importance of giving practitioners permission to spend time building relationships and making it possible for them to do so.

6.11.2.Best evidence advises comprehensive assessments, especially in situations of service refusal, focusing on risk, mental capacity, mental and physical health, and care and support needs.

There was recognition in the fishbowl discussions that notions of lifestyle choice were often erroneous. However, practitioners identified a challenge that the idea of lifestyle might result in some services not engaging in a multi-agency approach. Also a challenge was the interface between mental health and mental capacity.

It was observed that the first appointment with someone is often an assessment. Yet the evidence-base begins with the importance of relationships. It was questioned, therefore, whether the starting point should be building a relationship, helping people to feel safe, to develop trust before we ask a comprehensive set of questions which might create or add to the person’s sense of power differential. More time spent early on, invested in understanding what matters to the individual and what’s happened to them, might prove beneficial.

One area that they considered was not always recognised was the importance of environmental or fire risk, although some practitioners had been very proactive about such risks. The risk of normalising or becoming inured to self-neglect was again highlighted. Continual reflection, for instance in supervision, was necessary for scrutiny of the point where action in the form of imposed interventions might become necessary. Having chronologies available was recognised as assisting this scrutiny.

In relation to mental capacity, a view was expressed that staff are still confused about capacity and executive function.

6.11.3.Best evidence shows that where possible and safe to do so, involvement of family and friends in assessments and care planning is helpful, with clear expectations of and support provided for carers.

6.11.4.Best evidence also points to the need for careful preparation at points of transition, for example hospital discharge. In the practitioners’ fishbowl discussion, decision-making around planning and discharge was not currently for some a collaborative process. They felt other services needed to be involved in the discharge process but the pressure on hospitals was also noted. The shift to a Discharge 2 Assess approach needed monitoring.

Poor discharge planning was also referenced in relation to individuals who were alcohol-dependent. There did not seem to be an interim solution to support them to build resilience, as a result of which they returned to a chaotic lifestyle. Senior leaders identified this as a commissioning gap (see below).

6.11.5.Best evidence advocates the use of advocacy where this might assist a person to engage with assessments, service provision and treatment.

Participants in the fishbowls gave examples of positive contributions from Independent Mental Capacity Advocates and Care Act advocates.

6.12.   Domain Two: Interagency working

6.12.1.Best evidence shows the value of inter-agency communication and collaboration, coordinated by a lead agency and key worker, working together.

In the fishbowl discussions, good working relationships, founded on committed and approachable staff, strong relationships between services, and flexible and responsive care providers were given as examples of what was working well. One example given was that of the resettlement team (homelessness). It was, however, important to find the person with the right knowledge and skill set to be a case coordinator.

Practitioners and operational managers also voiced challenges regarding how services were working together. Examples focused on engagement, for example with GPs and with mental health services. Examples were given of how other areas had developed co-located teams to provide a ‘whole system’ response to self-neglect, involving housing, social care, mental health and substance misuse practitioners. Positive local developments were also mentioned, including the development of mental wellbeing practitioners in primary care, GP leadership in common mental health problems, and collaboration to respond to people experiencing homelessness

6.12.2. Best evidence calls for a comprehensive approach to information-sharing, so that all agencies involved possess the full rather than a partial picture.

Fishbowl discussions indicated that access to information remained a challenge, for instance when Police Officers sought information ‘out of hours’. Systems ‘not talking to each other’ was identified as frustrating.

6.12.3.Best evidence demonstrates the need for detailed referrals where one agency is requesting the assistance of another in order to meet a person’s needs.

In the fishbowls, issues of consent were identified as a barrier to referrals. Some practitioners were said to be uncertain about the pathways to follow, for example to access mental health services for people who hoard, or to respond to the needs of people with comorbidities.

6.12.4.Best evidence calls for multi-agency meetings that pool information and assessments of risk and mental capacity, agree a risk management plan, and consider legal options.

Once again, fishbowl participants emphasised the importance of multi-agency meetings becoming a routine feature of practice, akin to MARAC and MAPPA meetings. Examples were given, for example by the Probation Service, of where multi-agency meetings had proved beneficial in focusing on a person’s needs, enabling discussion of what each agency might be able to offer in support.

There were diverse experiences of a creative solutions panel, drawing on the Plymouth model. Where it had not worked well, one challenge was the geography of Devon. There was agreement, however, that thinking through and then providing for different levels of multi-agency meetings would be helpful, including reinvigorating something akin to a creative solutions panel. Offering the possibility of case discussion in timetabled multi-agency consultations were suggested as one means of breaking down silo working. Such consultation had been offered by one secondary service to good effect.

6.12.5.Best evidence demonstrates the value of policies and procedures and guidance for working with adults who self-neglect.

Reference was made in the practitioners’ fishbowl to guidance about hoarding, including clutter-rating images that depict the various stages of being cluttered to being considered hoarding and help identify a level at which a threshold for concern is reached.

Senior leaders recognised a fundamental tension, rooted in part in available resources, between ‘what we know should happen and what we know can happen’. They suggested that it would be helpful if there was interagency agreement about best practice, captured in policy and procedures, which would act as a framework for practice.  It was important to ‘make the right thing to do the easy thing to do’.

6.12.6.Best evidence demonstrates the importance of the duty to enquire (Section 42, Care Act 2014) where this would assist in coordinating the multiagency effort, sometimes referred to as safeguarding literacy.

Participants voiced concerns, however, that adult safeguarding referrals were pushed back to the service that had raised the concerns, that decisions were inconsistent and sometimes taken without consultation with the referrer, and that multiple or repetitive concerns were not recognised.

6.12.7.Best evidence also calls for legal literacy – evaluation of the relevance of diverse legal options to assist with case management.

Not all practitioners were confident about their legal knowledge. Of concern also to practitioners was a perceived resistance to considering applications to the High Court for the exercise of its inherent jurisdiction. Senior leaders reframed the idea of legal literacy to mean ‘how can legal frameworks help us provide what this person needs?’

6.12.8.Best evidence shows the importance of clear and thorough recording of assessments, reviews and decision-making

Not everyone in the fishbowl discussions was convinced about the standards of recording. However, there was support for joint databases rather than currently either being unable to access recording by other services involved or having to consult several systems in order to track the work being done. Frustration was also expressed that recording systems did not necessarily flag the formal involvement of adult safeguarding in a case.

Senior leaders identified that in a digital age further work was necessary to enable records to be more easily accessible to those who needed to consult them. They questioned whether there was sufficient knowledge of what is currently possible.

6.13.   Domain Three: Organisational features

6.13.1.Best evidence calls for supervision that promotes reflection and critical analysis of the approach being taken to the case and for support for staff working with people who are hard to engage, resistant and sometimes hostile.

Fishbowl participants emphasised the importance of staff supervision being prioritised, to prevent hopelessness and to provide support for best practice. This point was also raised in relation to risk since tired professionals might become over-familiar with cases (professional optimism); it can be too painful to think the unthinkable, especially if exhausted. One suggestion was for the development of multi-agency supervision when a multi-disciplinary team was working in a context of complexity.

They gave examples of managers who were willing to support best practice. However, the most important need was for more staff/time so that when working with a complex case there is sufficient time to think, time for supervision and time to access specialist advice/support to help unpick complex and worrying situations, and to feel protected/supported themselves. This clearly links to the availability of specialist legal and safeguarding advice, again a component of best practice. The fishbowl discussions highlighted the importance of seeking legal advice early but also that there might be uncertainty about how to access it. One suggestion was offered, namely in place of different services seeking their own legal advice, whether joint funded posts could be provided to offer the ‘whole system’ legal advice.

6.13.2.Best evidence calls for case oversight, including comprehensive commissioning and contract monitoring of service providers.

Fishbowl participants gave examples of positive service developments, including a new role of the homelessness and health inclusion nurse in one part of Devon. Challenges included the lack of services to refer people to, and the cost of some current care providers, meaning that panel discussions could prove ‘a battle’. Questions were also asked of commissioning, for example about whether services were being contracted to support people experiencing mental distress (often underlying self-neglect and hoarding) as distinct from mental illness, or to provide specialist hoarding work.

There was, however, a strong sense that Torbay and Devon had ‘been here before’ when reviewing the outcomes of self-neglect cases and that a different, more integrated, less siloed approach to commissioning was required. Senior leaders suggested that this had to involve the better use of safeguarding and public health data to inform commissioning decisions. The creation of Integrated Care Boards also provided an opportunity for shared responses to self-neglect and commissioning. They acknowledged also the need to rethink the use of key performance indicators in order to release provider potential and to enable services to move beyond thresholds and criteria in complex cases.

Given the limited financial envelope available to the public sector, senior leaders also suggested that it would be timely to consider whether better use was being made of existing resources. One suggestion was whether the establishment of a self-neglect service would be helpful. Another was to review how to enable GPs to feed into multi-agency and multi-disciplinary discussions.

Senior leaders acknowledged the value of managerial oversight and pointed out that escalation could enable relationships between strategic managers to unlock ‘stuckness’. However, they also acknowledged that systems need to avoid undue dependence on relationships at a personal level and to build an infrastructure of cooperation, and also to recognise the impact on practitioners and operational managers when they required senior leaders’ involvement to resolve issues.

6.13.3.Best evidence indicates the need for attention to workforce and workplace issues, such as staffing levels, organisational cultures and thresholds.

In discussion, a prominent challenge experienced was the level of demand, for example on Adult Social Care, making triage particularly time-consuming and complex, with some individuals having been on a waiting list for some considerable time because of the decision to address needs that appeared more urgent.

Recruitment and retention of staff was identified as a challenge; there was a plea for more staff because of current demand. This was combined with a felt need to focus much more on staff wellbeing, for instance to prevent burnout and/or to prevent normalisation of risk.

Also identified as a concern was the level of training provided for care provider staff who were often asked to work in challenging and complex situations. There is a link here to commissioning and the requirements for training of staff on adult safeguarding.

6.14.   Domain Four: Governance

6.14.1.Best evidence calls for the development, dissemination and auditing of the impact of policies and procedures regarding self-neglect.

Some doubt was expressed at the learning event concerning whether senior leaders really understood the challenges encountered by practitioners and operational managers, whether strategic priorities were informed by ‘front line’ experience, and whether anything would really change. One suggestion was that a project would be beneficial to look at discharges, referrals and safeguarding meetings.

Another suggestion was for an agency and inter-agency policy review, reflecting on the lessons emerging from this thematic review, and the development or revision of self-neglect and lead agency procedures or protocols, with the aim of improving collaborative working, including with third sector organisations.

This directs the SAB to consider its strategic plan and the place of self-neglect within it, and to consider how to monitor the implementation and impact of recommendations from this thematic review and previous SARs on self-neglect.

6.14.2.Best evidence shows the value of workshops on practice and the management of practice with adults who self-neglect.

Not all practitioners and operational managers were confident that self-neglect would be recognised in practice. Multiagency training on self-neglect, to include available legal frameworks and the impact of trauma, was a need identified. Enhanced training was also suggested about complex Mental Capacity Act assessments around executive functioning and managing risk around fluctuating capacity influenced by substance misuse.

6.14.3.Best evidence calls for proactive awareness raising with community groups about the presence and risks of self-neglect.

Fishbowl discussions identified a need to raise awareness amongst faith and community groups about self-neglect and pathways into services. Equally, it was felt that not all practitioners were aware of services that are available and that a list of those services, with contact details would be helpful.

6.15.   In conclusion, the learning event was experienced as ‘a much-needed discussion’, informative and interesting. It provided an opportunity for reflection. However, those attending clearly recognised that it would be the next steps that would be crucial in making a difference. The lessons learned had to be taken up and changes implemented. There had been previous reviews of self-neglect in Torbay and Devon. It was clear that ‘more of the same would only generate the same outcomes. Participants indicated they would welcome further opportunities to review and to contribute to practice and organisational change as it is taken forward.

7. Changes made by agencies

Clearly agencies should not, and indeed do not, wait for the outcomes of a Safeguarding Adult Review before making changes they perceive are necessary. Agencies here have provided information on changes made to their own practice in the light of learning from their involvement with one or more of the individuals who feature in this thematic review. These changes are set out here so that they can be noted and confirmed to the TDSAP.

7.1.   Adult Social Care

7.1.1.In response to reflection on BB’s case, Adult Social Care have reviewed their safeguarding triage process and have progressed a number of self-neglect cases to section 42 enquiry stage where they previously would not have done this in the absence of consent from the individual. Discussions about self-neglect cases are now embedded within supervision agendas and a critical, questioning approach taken, with follow up on agreed actions at subsequent supervision sessions. Team discussions have taken on the balance to be struck between self-determination and state intervention, and service refusal is much more frequently challenged. Personal histories are explored and taken more fully into account.  Staffing is still an issue, but two senior social workers and a newly qualified social workers are in post, with a further appointment expected.

7.1.2.In response to AA’s case, a Creative Solutions Forum has been developed to ensure complex cases of this nature can be discussed by all agencies. Self-neglect is clearly identified as a safeguarding situation and referrals are coming through the safeguarding hub to the Community Health and Social Care Team. The Housing/Homeless team are committed to identifying self-neglect earlier to try to ensure a multidisciplinary approach.

7.1.3.In respect of DD, the Adult Social Care submission to this review includes an action plan detailing planned actions, on which the TDSAP will need assurance.

7.1.4.In respect of EE, in whose case there was a delay in communicating with the Coroner, as required where a safeguarding process is in motion at the time of death, a staff webinar has been held alongside guidance on the importance of timely communication with the coroner’s office.

7.1.5.The service also stated its intention to make the following additional changes:

a)      All staff to undergo safeguarding and MCA refresher training

b)      Improve team knowledge of self-neglect

c)      Improve understanding of the need for longer term working to build relationships and understand the person’s history in self-neglect cases

d)      Ensure closer supervision and case oversight of self-neglect cases

7.2.   GP surgeries

7.2.1.The surgery involved with both BB and EE has reviewed its processes to ensure that in a similar situation the best possible outcomes are achieved.

·        Dementia review and recalls: as part of the annual recall system the surgery contacts all At Risk and Long-Term Condition patients. All GPs are aware of the need to ensure vulnerable patients are followed up where needed. In addition patients are assessed against a Frailty Index, which also ensures those who are more at risk of a trip or fall have additional input.

·       Serious Events Audit: the surgery holds these are held on a monthly basis and all incidents, near misses and relevant clinical events are highlighted and reviewed. BB’s case was discussed at the audit and the policy is reviewed annually.

·       Safeguarding training and processes: All staff at the practice complete Adult and Child Safeguarding Training both through Bluestream Academy and via face-to-face facilitators. The surgery also has a Safeguarding Lead GP and dedicated safeguarding administration.

·       The surgery involved with DD has resumed monthly virtual ward meetings and weekly discussion in surgery of vulnerable patients, with a new Direct Enhanced Service that has started. The surgery’s submission to this review includes an action plan that the SAB should monitor for outcomes on which the TDSAP will require assurance.

7.3.   Devon Partnership Trust

7.3.1.In response to reflection on BB’s case, DPT has strengthened guidance on mental capacity assessment and improved documentation proformas. Audit of completed capacity assessments has demonstrated that understanding of the Mental Capacity Act and quality of assessments has improved since 2017. There are routine programmes of audit in place regarding the Mental Capacity Act which are reported to our Mental Health Act/Mental Capacity Act Scrutiny Committee. Work is ongoing to ensure ongoing improvement in quality of completed MCA assessments.

7.3.2.Training compliance both in respect of safeguarding adults and the Mental Capacity Act has significantly improved since 2017 and the content of training is reviewed and updated regularly. Covid-19 has resulted in further reviews in how training is delivered, with training increasingly delivered on-line.

7.3.3.The safeguarding team offers a duty system within working hours whereby clinicians can access safeguarding consultation from a member of the team on the clinical management of an individual or where they are concerned that behaviours may indicate abuse or neglect.

7.3.4.Both in training and in consultation with clinicians the Trust encourages clinicians to proactively undertake assessments of capacity where patients’ decisions appear not to minimise risk and to discuss the importance of defensible decision-making. Clinicians are advised to proactively document how they assess and conclude that a patient has capacity to make decisions, rather than simply recording that they do not have any concerns about capacity. There is a wide range of resources available on the Trust Safeguarding Intranet site about self-neglect, including assessment proformas.

7.4.   Devon & Somerset Fire & Rescue Service

7.4.1.Arising from experience in the BB case home safety technicians are now advised of the importance of recording areas of concern and of all advice given to the occupant during the home safety visit. Since 2017 there has been an overall improvement on the recording of notes made during home safety visits.

7.4.2.The service also stated its intention to make the following changes:

a)      Technicians to record detailed notes of specific advice provided around specific fire safety concerns

b)      Review the process whereby smoke detection can be fitted or provided to a third party in circumstances where a full Home Safety Visit cannot take place

c)      Programme of quality assurance of technician visits to be implemented

7.5.   The third care agency to be involved with BB

When making phone calls to other agencies regarding concerns about an individual, the agency now follows it up with an accompanying email listing the issues. They also request a written statement on the action to be taken and by whom. If not forth coming, then the issue is escalated.

7.6.   North Devon Healthcare NHS Trust

As a result of the BB case, the Trust has made a number of changes:

7.6.1.The practice of community nurses having informal discussions with social care colleagues in the office has been replaced by formal referrals on every occasion when safeguarding concerns are raised.

7.6.2.An action plan to improve clinical application of the Mental Capacity Act has been presented to the NDHT Safeguarding Adults Operational Group and is in place. Actions already taken include:

·       MCA face-to-face training is being provided at Level 3 for staff who require this level of training as identified by the Safeguarding Adults Intercollegiate Doc 2018 and is available to all staff within the Trust.

·       Safeguarding adults and MCA training is being provided on Wards and Departments at key governance meetings.

·       A quarterly Safeguarding Adults Lead Practitioners meeting takes place, consisting of staff from each area of the hospital and community with an interest in safeguarding. These staff are then the link to cascade information and provide supervision. They receive supervision training and additional training and support to undertake the enhanced role.

·       Lanyards have been distributed to all staff within the Trust to remind them of MCA key information.

·       An MCA Quick Guide has been produced and will be provided for all staff members as a guide staff responsibilities.

·       Individual 1:1 support and email guidance is provided to staff when a safeguarding referral is made to remind staff about mental capacity.

·       If there is reason to be concerned that an individual’s capacity for a specific decision may be affected, staff are expected to undertake an assessment and record the outcome.

7.6.3.An integrated safeguarding team with specialist nurses for safeguarding adults offer support and advice. The Internal Datix system alerts the safeguarding team immediately so that support and advice can be provided. An electronic referral/concerns form has been developed to send concerns to the local authority safeguarding team copied to the NDHT safeguarding team. All community staff have been advised to make safeguarding concerns directly to the local authority safeguarding team if they identify concerns about abuse and neglect and not to ‘manage’ them within the local health and social care teams.

7.6.4.Safeguarding is an agenda item on all team meetings and cases are explored and discussed. The community team now have a ‘daily safety huddle’ and this has had a significant impact on improving practice. A Safeguarding Operational group meets monthly and explores learning from Section 42 enquiries, practice and process, and reviews performance. The community matron attends this meeting. Safeguarding link practitioners from each clinical area in community and acute settings have been developed and have received additional safeguarding training including safeguarding supervision. Safeguarding Supervision training has been provided for 40 staff across the Trust. Supervisors offer group and/or 1:1 safeguarding supervision to staff within their clinical area. Staff are advised that when risks of self-neglect and or home safety risks are identified concerns should be discussed with senior staff and supervision must be sought. If safeguarding concerns are identified then a safeguarding referral must be made to the local authority Safeguarding Team.

7.6.5.As a result of learning from AA’s case, Bowel and Bladder Care Service patients no longer receive text reminders regarding the return of their questionnaire and charting paperwork; this is all now sent by letter. The process has been shortened to one reminder being sent after 2 weeks and then a further reminder after 2 weeks stating if the paperwork not received within 2 weeks would be discharged back to referring person. If this process had been in place for AA his failure to respond would have been highlighted more quickly.

7.6.6.The Trust also stated its intention to make the following additional changes

a)      Introduce regular opportunity for safeguarding supervision at team meetings and ad hoc to staff working with adults in the community.

b)      Improve clinical application of the Mental Capacity Act (2005) within safeguarding practice

c)      Focus on self-neglect in 20/21 Work Plan for the Operational Group

7.7.   Royal Devon & Exeter Foundation Trust

7.7.1.Arising from experience in BB’s case, more education and information about self-neglect has been communicated to staff since 2019.

7.7.2.Arising from AA’s case, a Creative Solutions Forum has been introduced. More advice about self-neglect is available for staff through a link professionals’ forum, training, twitter and safeguarding newsletters. All clinical staff have been trained to complete mental capacity assessments and are advised to seek advice and education to aid their confidence in this area.

7.7.3.In relation to FF’s case, the Trust implemented electronic records in October 2020. While this would have no bearing on his case, where communications are well documented, since its introduction the safeguarding team have recognised the improvement in communication and ability to use and write notes more readily.

7.7.4.The hospital also stated its intention to make the following additional changes:

a)      With complex patients, especially those with self-neglect, staff to ensure more regular assessment and discussion of mental capacity

b)      Alcohol Liaison Nurse to provide communications to Mardon Clinic and other areas of the Trust not previously contacted to inform of her role and the support she can provide

7.8.   South Western Ambulance Service NHS Foundation Trust

In the context of BB’s case, the Trust note that the role of ambulance services in managing alcohol intoxication in pre-hospital care is subject to national debate. There have been a number of contrasting views expressed by coroners over the last few years. A difficult balance needs to be struck between risk management on scene and over-loading the acute care sector with unnecessary hospital admissions. There are contrasting views expressed by experts on mental capacity about the assessment of capacity in patients who are intoxicated. Some experts express a view that no-one with unprocessed alcohol in the blood-stream alcohol has capacity. Others express a view that the level of intoxication is merely a factor in assessing capacity. SWASFT has developed a training module on alcohol intoxication for delivery to staff in 2020/21 based on the latest guidance released by the Joint Royal Colleges Ambulance Liaison Committee. SWASFT continues to monitor the national situation and to adjust guidance and training as necessary.

7.9.   Devon & Cornwall Police

In relation to FF’s case, the Police comment that the introduction of the Safeguarding Improvement Hub in 2020 stands at the forefront of future strategies, policies, and guidance around vulnerabilities. The Hub owns and drives recommendations from local and national level and links into the statutory review process should any recommendations follow from them. Within the Hub there are dedicated teams for strands of vulnerability, one of which is Vulnerable Adults.

8. Conclusion and recommendations

8.1.   This thematic review was commissioned to explore practice in Torbay and Devon through the lens of six cases in which self-neglect was a key feature of the individuals’ lives. Its terms of reference were:

a.       To identify common learning themes relating to work with self-neglect in Torbay and Devon arising from six cases in which self-neglect was a feature;

b.       To identify systemic issues across the safeguarding partnership affecting practice in cases of self-neglect, in particular features that help and features that hinder effective work;

c.       To consider how that learning resonates with the evidence base on best practice in self-neglect work, derived from self-neglect SARs nationally and from research into approaches that achieve positive outcomes;

d.       To identify the impacts of Covid-19, given three of the six deaths took place during the early months of the pandemic.

8.2.   Common learning themes: The report has drawn on documentation provided by the services involved, on commentary from relatives, and on the feedback provided by practitioners, operational managers and senior leaders during the learning event. It has set out the common themes arising across the cases in four domains: direct work with the individuals involved, interagency working, organisational features affecting practice and the governance role of the Torbay & Devon Safeguarding Adults Partnership.

8.3.   Systemic issues across the safeguarding partnership affecting practice in cases of self-neglect: There is a close alignment between the features that help or hinder effective work as identified through the documentation from the services involved and the critical but appreciative reflections shared at the learning event. Good practice and practice shortfalls in one domain, such as the direct practice carried out with an individual, might be explained by reference to features of other domains such as interagency working or organisational systems. The context within which practitioners and operational managers were working can clearly be seen to have impacted on how services worked together and on direct work with the individuals concerned.

8.4.   Resonance of the learning with the evidence base on best practice in self-neglect work:  The four domains of the best practice evidence-base, derived from self-neglect SARs nationally and from research into approaches that achieve positive outcomes, permeate this thematic review, enabling the report to highlight good practice and what sustained it, where this occurred, but also to pinpoint practice shortfalls and the context in which they occurred.

8.5.   Impacts of Covid-19: The deaths of three of the six individuals took place during the early months of the pandemic in 2020. The report contains explicit reference to the impact of the pandemic, drawing again from the reflections of agencies in their written submissions to the review and from the feedback from those who attended the learning event. The pressures, anxieties and restrictions in place at the time clearly had a significant impact on how agencies were able to work during those early months of the pandemic; they were also able to remain responsive and to maintain key provision. But it is also clear that the pandemic is only one of a range of factors that influenced practice; the learning themes are consistent throughout the whole period under scrutiny, both before and during the pandemic and the shortcomings observed are for the most part not attributable to Covid-19.

8.6.   Previous learning: TDSAP has recently been established from previously separate safeguarding adults boards for Torbay and Devon. The predecessor boards had completed reviews where self-neglect had been a prominent feature. Unsurprisingly, therefore, at the learning event there was a recognition that ‘we have been here before’ and that simply continuing as before would result in similar outcomes. Accordingly, the challenge for TDSAP is not just to embed the learning from this thematic review in practice but also to appraise the outcomes of previous SARs completed locally and to address obstacles to change.

8.7.   The fifth domain: As referenced in the report, there is a fifth domain, namely the legal, policy and financial context within which adult safeguarding is situated. Resource constraint, a shortage of care providers, and challenges of recruitment and retention are not just local phenomena but are features of adult safeguarding both regionally and nationally. There are over 400 reviews of cases of self-neglect and it remains the most frequently reviewed type of abuse and neglect. TDSAP might wish to engage with other Boards to escalate concerns about the shape of current legal rules, for example in relation to mental capacity and/or alcohol-dependence, and about central government decision-making that impacts on recruitment to, and retention in, the health and social care workforce.

8.8.   The recommendations that follow have been informed by the thematic analysis, by observations shared at the learning event, and by suggestions from the services involved when reviewing internally their contribution to each of the six cases. It is recommended that in order to bring about the needed improvements to self-neglect practice, the TDSAP should:

1.       Review its procedures for decision-making on referrals for safeguarding adult reviews to ensure timely consideration is given and timely action taken;

2.       Review existing TDSAP self-neglect guidance in the light of the learning from this thematic review, in order to strengthen existing content and to identify and remedy any gaps or omissions (to include a strengthened focus on family engagement);

3.       Audit the use of its guidance on self-neglect, escalation, adult safeguarding concerns, and multi-agency meetings by agencies across the Partnership;

4.       Audit decision-making on adult safeguarding concerns referred under section 42(1) Care Act 2014, and the outcomes of referrals and enquiries, to seek assurance that risks of self-neglect are addressed effectively;

5.       Audit mental capacity practice in cases of self-neglect, with particular attention to consideration of executive function and fluctuating capacity, and take measures to strengthen practice through training, guidance or supervisory practice where indicated;

6.       Seek assurance from partner agencies that practitioners who are working with self-neglect (including where individuals have mental capacity) understand the need to refer concerns to safeguarding teams and to guard against diagnostic overshadowing in their assessment of need and risk;

7.       Seek assurance that practitioners and those with supervisory responsibilities across all services understand the need to initiate multiagency review in cases of high-risk self-neglect, that pathways for doing so are clear and that they are being used effectively;

8.       Provide multiagency training on self-neglect, on referrals of adult safeguarding concerns, and on legal literacy, particularly with respect to safeguarding, mental capacity, consent and information-sharing;

9.       Provide guidance and training on working with reluctance to engage for practitioners across services;

10.   Seek assurance from partner agencies that supervision and management oversight is provided to practitioners working with self-neglect cases;

11.   Audit cases of hospital discharge where self-neglect is a feature in order to determine whether risks are routinely identified and mitigation measures put in place during the hospital discharge process;

12.   Convene a summit of commissioners and providers to review gaps in services and to develop further integrated approaches to commissioning;

13.   Seek assurance from mental health and substance misuse service providers on how they are working, individually and collaboratively, in cases of self-neglect that involve mental ill-health and substance misuse and, in the light of this information, consider commissioning priorities for dual diagnosis services;

14.   Seek assurance about systems for ensuring effective and timely continence care in the community following hospital discharge;

15.   Seek assurance that housing providers are identifying tenants whose self-neglect might be placing their tenancies at risk and are referring to primary care and social care to ensure that health and social care needs are assessed and appropriate support provided;

16.   Ensure that measures are taken to ensure effective use of multi-agency meetings, whether convened on an ‘as needed’ basis or through a regular standing arrangement, to improve timely and whole system responses to individuals who self-neglect;

17.   Seek assurance that services have systems in place to identify and support all individuals at risk of self-neglect who may at some future point be recommended to take self-protective measures (such as shielding or social-distancing) as part of COVID-19 pandemic measures;

18.   Seek assurance from individual services regarding the completion of internal changes they stated had been made or they intended to make, as set out in section 7 of this report.

Appendix 1: Glossary of acronyms

Acronym	Meaning
ABBCS	Adult Bladder and Bowel Care Service
ASC	Adult Social Care
BCHA	Bournemouth Churches Housing Association
COPD	Chronic obstructive lung disease
CMHT	Community Mental Health Team
CPN	Community psychiatric nurse
CT	Computerised tomography
DoLS	Deprivation of Liberty Safeguards
DPT	Devon Partnership NHS Trust
EDDC	East Devon District Council
FRS	Devon & Somerset Fire & Rescue Service
GP	General Practitioner
MAPPA	Multi Agency Public Protection Arrangements
MARAC	Multi Agency Risk Assessment Conference
MASH	Multi Agency Safeguarding Hub
RD&EFT	Royal Devon & Exeter Foundation Trust
RD&EH	Royal Devon & Exeter Hospital
RSPCA	Royal Society for the Prevention of Cruelty to Animals
SAB	Safeguarding Adults Board
SAR	Safeguarding Adults Review
SWASFT	South Western Ambulance Service NHS Foundation Trust
TDSAP	Torbay & Devon Safeguarding Adults Partnership
UCRT	Urgent Community Response Team
ViST	Vulnerability Identification Screening Tool

 

Appendix 2: The self-neglect evidence base

1.       The domain of direct practice

Best practice with the adult is characterised by the following:

1.1. A person-centred approach that comprises proactive rather than reactive engagement, and a detailed exploration of the person’s wishes, feelings, views, experiences, needs and desired outcomes;

1.2. A combination of concerned and authoritative professional curiosity, characterised by gentle persistence, skilled questioning, conveyed empathy and relationship-building skills;

1.3. When faced with service refusal, a full exploration of what may lie behind a person’s refusal to engage; shame and trauma (rather than lifestyle choice) can lie behind refusals to engage;

1.4. A good understanding of the person’s history;

1.5. Recognition and work to address issues of loss and trauma in a person’s life experience;

1.6. Recognition and work to address repetitive patterns;

1.7. Contact maintained rather than the case closed so that trust can be built;

1.8. Comprehensive risk assessments, especially in situations of service refusal;

1.9. Where possible, involvement of family and friends in assessments and care planning, with clear expectations of and support provided for carers;

1.10. Thorough mental capacity assessments, which include consideration of executive capacity

1.11. Careful preparation at points of transition, for example hospital discharge;

1.12. Use of advocacy where this might assist a person to engage with assessments, service provision and treatment;

1.13. Thorough health, mental health and care and support assessments, plans and regular reviews.

2.       The domain of interagency working

It is recommended that the work of the team around the adult should comprise:

2.1. Inter-agency communication and collaboration, coordinated by a lead agency and key worker;

2.2. A comprehensive approach to information-sharing, so that all agencies involved possess the full rather than a partial picture;

2.3. Detailed referrals where one agency is requesting the assistance of another in order to meet a person’s needs;

2.4. Multi-agency meetings that pool information and assessments of risk and mental capacity, agree a risk management plan, and consider legal options;

2.5. Use of policies and procedures for working with adults who self-neglect;

2.6. Use of the duty to enquire (Section 42, Care Act 2014) where this would assist in coordinating the multi-agency effort;

2.7. Evaluation of the relevance of diverse legal options to assist with case management;

2.8. Clear and thorough recording of assessments, reviews and decision-making.

3.       The organisational domain

It is recommended that the organisations around the team provide:

3.1. Supervision that promotes reflection and critical analysis of the approach being taken;

3.2. Recognition of the personal impact of working with self-neglect, and support for staff working with people who are hard to engage, resistant and sometimes hostile;

3.3. Specialist legal and safeguarding advice;

3.4. Case oversight, including comprehensive commissioning and contract monitoring of service providers;

3.5. Attention to workforce and workplace issues, such as staffing levels, organisational cultures and thresholds.

4.       The governance domain

It is recommended that the Safeguarding Adults Board provides:

4.1. Strategic interagency leadership on self-neglect;

4.2. The development, dissemination and auditing of the impact of policies and procedures regarding self-neglect;

4.3. Workshops on practice and the management of practice with adults who self-neglect.

5.       The national domain

About 25% of SARs identify impacts from national features of safeguarding, which are beyond the control of individual, local partnerships but nonetheless influence how local practice unfolds. These include:

5.1. Legal powers and duties that shape intervention;

5.2. Actions and practices of national bodies.

It is recommended that Safeguarding Adults Boards and Partnerships engage proactively with such national features where SAR learning indicates that they impede best practice.

Appendix 3: Mental capacity and executive function

In assessing mental capacity, it is important to recognise the relevance of executive brain function for an individual’s ability to make and act on a decision. Executive capacity refers to the cognitive processes – ‘executive functions’ – controlled by the frontal lobes of the brain. They are vital for the processes of understanding, retaining, using and weighing relevant information as part of the decision-making process.

Executive dysfunction, which can be caused by a range of factors such as acquired brain injury, cardiovascular disease, stroke, dementia, diabetes, or health conditions arising from long-term alcohol use, has been found to be a predominant factor that inhibits appropriate decision-making and problem solving. Sometimes impairment of executive function poses an individual no difficulty in reasoning through a decision in the abstract, such as when participating in a capacity assessment carried out by interview, but leaves them unable to plan and organise actions, engage in problem-solving, or monitor and adapt to a changing situation, thus posing them difficulties in judging when a decision should be put into action – i.e. in using or weighing relevant information and taking action at the appropriate moment. Thus there is a difference between the ability to understand and reason through the elements of a decision in abstract discussion, and the ability to use or weigh that relevant information in the moment when the decision needs to be made and enacted. Thus an individual may perform well in interview or discussion, despite marked impairments in everyday life – being able to ‘talk the talk’ but unable to ‘walk the walk’.

Where assessment of someone’s history or behaviour suggests that there may be executive difficulties, further investigation would be justified: for example, where the individual consistently assures the assessor that they are able to self-care independently and that their decision is therefore not to accept support, but there is a history of repeated failures of self-care on their part for which they do not seem able to account adequately. The MCA Code of Practice (DCA, 2007), while emphasising that an unwise decision does not of itself indicate a lack of mental capacity, draws attention to the need to question capacity in circumstances where repeated unwise decisions place an individual at significant risk.

Such a pattern may be found in cases of self-neglect, a field in which there has been a focus on the role of executive capacity in compromising self-care. Association has been found between frontal lobe dysfunction and severe domestic squalor, difficulties with the motivation or organisation necessary to pursue activities of daily living, and difficulties with planning, recognition of the state of premises, social interaction, problem solving, memory recall and decision making. There is also evidence that suggests executive dysfunction may play a critical role in later life hoarding.

Thus a failure to understand the impact of frontal lobe damage can distort mental capacity assessments and potentially increase risk. ‘Articulate and demonstrate’ methods of assessment, which observe the individual at the time and in the place or context where their decisions are being made, will be useful in that they observe an individual’s ability to enact a decision and to manage any consequences. Using such models involves asking the person not just to tell you about their decision but to demonstrate it in practice (e.g. “What do you do when you’re thirsty?” “I make myself a nice cup of tea, sit down and put my feet up.” “Let’s make a cup of tea now shall we?”`) Assessments that rely solely on interview or discussion of a decision in the abstract may miss decision-making difficulties that manifest themselves more clearly in actions (or inaction) outside of the interview setting. In abstract discussion, these difficulties may remain hidden due to preserved language and verbal reasoning skills. Indeed guidance from the National Institute for Health and Care Excellence advises that capacity assessment through interview may need to be supplemented by ‘real world observation’ in order to achieve a full picture of an individual’s decision-making ability. “Practitioners should be aware that it may be more difficult to assess capacity in people with executive dysfunction… Structured assessments of capacity for individuals in this group (for example, by way of interview) may therefore need to be supplemented by real-world observation of the person’s functioning and decision-making ability in order to provide the assessor with a complete picture of an individual’s decision-making ability” (paragraph 1.4.19).

Recent Court of Protection judgements have highlighted the importance of real world observation (Sunderland City Council v AS and Others [2020] EWCOP 13) and emphasised that mental capacity assessments should consider a person’s ability to think, act and solve problems since one function of the brain is to help us to learn new information, remember and retrieve the information we’ve learned in the past, and use this information to solve problems of everyday life (A Local Authority v AW [2020] EWCOP 24).

Drawing on multi-disciplinary input to capacity assessments will be important. For example, occupational therapy assessments routinely incorporate evaluation of how daily living tasks are carried out, and OTs’ skills in such assessments make an important contribution. OT involvement proved important in GW v A Local Authority [2014] EWCOP 20, where it was established, through real-world observation, that the individual could not use her abstract understanding of road safety to keep herself safe in the moment when surrounded by traffic.  Specialist neuropsychological assessment may also be appropriate as a means of evaluating executive brain function.

39 Essex St barristers’ chambers address executive function in their guidance on conducting mental capacity assessments: https://www.39essex.com/information-hub/insight/mental-capacity-guidance-note-assessment-and-recording-capacity They call executive functioning one of the flash points of capacity assessment and offer guidance on how it can be taken into account as part of the assessment:

“Another common area of difficulty is where a person gives superficially coherent answers to questions, but it is clear from their actions that they are unable to carry into effect the intentions expressed in those answers. It may also be that there is evidence that they cannot bring to mind relevant information at the point when they might need to implement a decision that they have considered in the abstract. Both of these situations are frequently referred to under the heading of ‘executive dysfunction.’ Executive function has also been described by Cobb J as “the ability to think, act, and solve problems, including the functions of
the brain which help us learn new information, remember and retrieve the information we’ve learned in the past, and use this information to solve problems of everyday life.” It can be very difficult in such cases to identify whether the person in fact lacks capacity within the meaning of the MCA 2005, but a key question can be whether they are aware of their own deficits, in other words, whether they able to use and weigh (or understand) the fact that there is a mismatch between their ability to respond to questions in the abstract and to act when faced by concrete situations. Failing to carry out a sufficiently detailed capacity assessment in such situations can expose the person to substantial risks. Our view is that:

·       You can legitimately conclude that a person lacks capacity to make a decision if they cannot understand or use/weigh the information, that they cannot implement what they will say that they do in the abstract, or (if relevant) that when needed, they are unable to bring to mind the information needed to implement a decision;

BUT

·       You can only reach such a finding where there is clearly documented evidence of repeated mismatch. This means, in consequence, it is very unlikely ever to be right to reach a conclusion that the person lacked capacity for this reason on the basis of one assessment alone.

AND

·       If you conclude that the person lacks capacity to make the decision, you must explain how the deficits that you have identified – and documented – relate to the functional tests in the MCA. You need to be able to explain how the deficit you have identified means (even with all practicable support) that the person cannot understand, retain, use and weigh relevant information, or communicate their decision.”

Safeguarding adult reviews have also highlighted the importance of including executive functioning in mental capacity assessments. SAR Carol (Teeswide SAB) observes: the concept of “executive capacity” is relevant where the individual has addictive or compulsive behaviours. This highlights the importance of considering the individual’s ability to put a decision into effect (executive capacity) in addition to their ability to make a decision (decisional capacity). SAR Howard (Isle of Wight SAB) and the Ms H and Ms I SAR (Tower Hamlets SAB) highlight that people might be driven by compulsions that are too strong for them to ignore.  Their actions can contradict their stated intention to control their alcohol use: i.e. they were unable to execute decisions that they had taken. The Ruth Mitchell SAR (Plymouth SAB) concluded: “To assess Ruth as having the mental capacity to make specific decisions on the basis of what she said only, could produce a false picture of her actual capacity. She needed an assessment based both on her verbal explanations and on observation of her capabilities, i.e. “show me, as well as tell me”. An assessment of Ruth’s mental capacity would need to consider her ability to implement and manage the consequences of her specific decisions, as well as her ability to weigh up information and communicate decisions”.

Further information on executive function can be found in the resources below:

Braye, S., Orr, D. and Preston-Shoot, M. (2017) ‘Autonomy and protection in self-neglect: the ethical complexity of decision-making’, Ethics & Social Welfare, 11, 4, 320-335.

Cameron, E. and Codling, J.  (2020) ‘When mental capacity assessments must delve beneath what people say to what they do’, Community Care, October 28.

When mental capacity assessments must delve beneath what people say to what they do

George, M., & Gilbert, S. (2018) ‘Mental Capacity Act (2005) assessments: Why everyone needs to know about the frontal lobe paradox’, The Neuropsychologist, 5, 59-66.

‘Mental Capacity Act (2005) assessments: Why everyone needs to know about the frontal lobe paradox’

Headway:https://www.headway.org.uk/about-brain-injury/individuals/effects-of-brain-injury/executive-dysfunction/

Hildebrand, C., Taylor, M. and Bradway, C. (2014) ‘Elder self-neglect: the failure of coping because of cognitive and functional impairments‘, Journal of the American Association of Nurse Practitioners, 26 452-462.

Naik A, Lai J, Kunik M and Dyer C (2008) ‘Assessing capacity in suspected cases of self-neglect’, Geriatrics, 63, 2, 24–31.

Newstead, S., Lewis, J., Roderique-Davies, G., Heirene, R. and John, B. (2022) ‘The paradox of the frontal lobe paradox. A scoping review’, Frontiers in Psychiatry, 13, article 913230, 1-7.

https://www.frontiersin.org/articles/10.3389/fpsyt.2022.913230/full

NICE (2018) Decision-Making and Mental Capacity. London: National Institute for Health and Care Excellence. https://www.nice.org.uk/guidance/ng108