Neglect Workshop 8 th February 2012

1. Neglect Workshop8th February 2012 Jill Manthorpe, Lynne Phair and Hazel Heath

2. Aims of this workshop • To explore some of the issues and dilemmas that face practitioners when intervening in cases of physical neglect • To consider clinical features of neglect – from a social work perspective • To identify some of the barriers to effective practice and how they can be overcome • To focus on community dwelling older people

3. 1. What is neglect? (and what is not being covered today) • Numerous definitions • Differences between neglect (by known and unknown) & self-neglect • General resources (free): • Safeguarding adults at risk of harm, http://www.scie.org.uk/publications/reports/report50.pdf • Self-neglect & adult safeguarding http://www.scie.org.uk/publications/reports/report46.pdf

4. A Research Definition of Neglect (Comic Relief/DH study) The repeated deprivation of assistance needed by the older person for important activities of daily living We grouped this into 3 (not exclusive) categories: • day to day activities (e.g. shopping) • personal care (e.g. getting in and out of bed, washing) • help with correct dose and timing of medication.

5. Definition of neglect – how often?(research based estimates) 10 or more instances of neglect in the past year by family member, close friend, care worker OR less than 10 instances in the past year but judged by the respondent to be ‘very serious’. Respondent had to state that they needed and received help with an activity, and that they had difficulty carrying out the activity by themselves.

6. One year prevalence of mistreatment & neglect(family, friends, care workers) Unweighted bases:UK 2106 (bases vary slightly, base shown here for neglect) Based on UK household population of 8,586,890 aged 66 and over (ONS, NISRA)

7. One year prevalence - broader definition (i.e. including neighbours & acquaintances) Unweighted base: 2106 (bases vary slightly, base shown here for neglect) Based on UK household population of 8,586,890 aged 66 and over (ONS, NISRA)

8. Findings 1: Neglect The risk factors appear to be: • being female • aged 85 and over • with bad/very bad health and depression And probably: • already in receipt of, or in touch with, services

9. Findings 2: Neglect (‘perpetrators’) Partners( followed by other family members) emerged as the main perpetrators of neglect. One hypothesis is that the ‘partner effect’ is positive up till the mid 80s, and after that disability (either mental or physical or both) sets in and neglect increases. This may not be deliberate neglect but comes about as two people with increasing disabilities try to support each other – and increasingly failing.

10. Poor care … neglect …or ‘just one of those things’?Lynne Phair and Hazel Heath

11. Examples of situations which can alert to possible neglectWHEN THE CAUSE IS UNEXPLAINED(Complications of Frailty) • Pressure ulcers • Dehydration • Inadequate nutrition • Recurrent acquired infections (urinary tract infection, chest infection, thrush) • Constipation / faecal incontinence • Intractable pain / poor pain management • Insomnia / twilight state of awareness / drowsiness • Confusion not linked to mental condition / delirium • Sense of hopelessness / resignation • Recurrent falls without identified cause • Acute illness / exacerbation of long term condition (this list is not exhaustive)

12. What is a pressure ulcer? Defined as: ‘an area of localised damage to the skin and underlying tissue caused by pressure, shear, friction and/or a combination of these’. European Pressure Ulcer Advisory Panel EPUAP (2003) Commonly referred to as pressure sores, bed sores, pressure damage, pressure injuries and decubitus ulcers

13. pressure shearing friction level of mobility sensory impairment continence level of consciousness acute, chronic and terminal illness comorbidity posture cognition, psychological status previous pressure damage extremes of age nutrition and hydration status moisture to the skin Pressure ulcer risk factors include:

15. MOST PRESSURE ULCERS ARE AVOIDABLEDefinition of ‘avoidable’ pressure ulcer ‘Avoidable’ means that the person receiving care developed a pressure ulcer and the provider of care did NOT do one of the following: • Evaluate the person’s clinical condition and pressure ulcer risk factors • Plan and implement interventions that are consistent with the person’s needs and goals • and recognised standards of practice • Monitor and evaluate the impact of the interventions • or revise the interventions as appropriate Commissioners, regulators and others could request to see evidence demonstrating the actions outlined are demonstrated. (Department of Health 2011)

16. Occasionally pressure ulcers are unavoidableDefinition of ‘unavoidable’ pressure ulcer ‘Unavoidable’ means that the person receiving care developed a pressure ulcer although the provider of care HAD: • Evaluated the person’s clinical condition and pressure ulcer risk factors • Planned and implemented interventions that are consistent with the person’s needs and goals • and recognised standards of practice • Monitored and evaluated the impact of the interventions • and revised the interventions as appropriate • or where the individual person refused to adhere to prevention strategies in spite of education of the consequences of non-adherence. (Department of Health 2011)

17. Older People are particularly at risk of consequences of neglect Due to, for example, • Age-related physiological changes • Multiple chronic illnesses and multiple drug treatments • Altered presentation of illness (delirium, falling, immobility, incontinence) • ‘The domino effect’ • Frailty

18. Frailty Frailty is a weakened state of being in which a person’s reserve capacity is reduced to an extent where health, functioning and wellbeing are compromised (Heath & Phair 2009).

19. A B C The process of damage and repair in humans

20. D E F The process of frailty development

22. Complications of frailty occur when the care delivered fails to compensate for the impact of frailty and other medical conditions on the person’s physical, psychological or spiritual health, resulting in harm to the person.Complications are mostly avoidable but are occasionally unavoidable despite evidence to show that appropriate care has been delivered (Heath & Phair 2009).

23. Neglect concerns: When to involve a registered nurse Healthcare focused investigation would be required when the primary concern is health related and when: • The health concerns or possible complexity or impact of the concerns are greater than a social care professional would be competent to examine • There is a need to establish the possible impact on the person’s health that may have already occurred, or is at risk of happening in the near future • There is real concern that the health of other vulnerable people may be at risk when the alert is in relation to other healthcare professionals.

24. Considerations for defining neglect: • Existence of obligation or duty • Expectation of knowledge and skills • Can be omission or commission • Can be intentional or unintentional • Can be context-bound or context free • Degree of regard for the risks involved • Distinction between neglect and negligence

25. Decisions on neglect are determined not only by the condition of a person in a specific situation but also by how he/she came to be there. Determinants of neglect • The person in the specific situation: The impact on, and consequences for, the vulnerable person of the care (action or inaction) • The omission or commission of care to meet the needs of the person: Exactly what the caregiver did or did not do to meet the specific needs of the vulnerable person • Caregiver duty and expectations: The expectations of what the caregiver should know and how the caregiver could reasonably have acted (to meet the needs of the vulnerable individual) • Whether, within the specific context, the caregiver took all reasonable actions to prevent adverse consequences occurring; the omission or commission of care to meet the needs of the vulnerable person(Heath & Phair 2009).

26. Implications of frailty for care or neglect

27. Examples: Neglect or not neglect?

28. Questions and answers • In small groups please identify three questions arising in practice. • We will then discuss these.

29. Wilful neglect (Mental Capacity Act 2005) covering people lacking capacity • Mental Capacity Act 2005 section 44 defines “ill-treatment” and “wilful neglect” • Criminalises neglect and abuse occurring in a relationship of trust • Can include professionals and family carers • The offender indulges in behaviour believing the person lacks capacity • Serious departures from required standards of treatment that they were aware they were under duty to perform • If reported and prosecuted, penalty for criminal offences may be fine and/or a prison sentence for up to five years

30. 12.09.09: Care home nurse conviction for neglect under Mental Capacity Act makes legal history Ms Dublas, aged 41, was found guilty of taking a photo on a mobile phone of a 92-year-old semi-naked woman after being convicted of ill-treatment and wilful neglect… A member of staff in Dublas’ organisation became aware of a photo in circulation of one of the residents, managed to obtain a copy and reported it to the authorities. The picture showed the elderly dementia sufferer being held up by her wrists and naked from the waist up.. She was sentenced to nine months' imprisonment, suspended for a year, 200 hours community service and banned from working with children and vulnerable adults in the future. http://cms.met.police.uk/news/convictions/nurse_conviction_makes_legal_history

31. Challenges taking on Wilful Neglect: examples from practitioners in Evidem study I think the difficulty is in terms of, evidencing wilful neglect, I think can sometimes be very difficult because people say ‘well. it wasn’t wilful’. And I think that is a stumbling block. I guess it is the issue that wilful neglect is often hard to prove and ultimately the legislation is only as good as the practice of the day, and I believe more often than not the vulnerable victims, even if we have independent advocacy for someone who lacks mental capacity, or who is beginning to lack mental capacity, that it is only as good as the legal system allows it to be in the Crown Prosecution Service. I think it is sometimes quite frustrating for the police to collect evidence because the threshold of evidence is very high, but thankfully the local authority have the process whereby it looks at probability, so hopefully our outcomes are better – I mean for the victim – and other potential vulnerable adults at risk of abuse in future and that really is where the real difference can be made. Researchers’ emphasis in bold

32. Some generic safeguarding points • Is recording of capacity assessment meeting MCA standards? • Observation – the worry about subjectivity • Self-neglect & neglect can occur concurrently • Mistreatment & neglect can occur concurrently • Being aware of cases and examples

33. Some generic tools for practice with carers • Do you sometimes feel that you can’t do what is really necessary or what should be done for X? • Do you often feel that you have to reject or ignore X? • Do you often feel so tired and exhausted that you cannot meet X’s needs? • Do you often feel you are being forced to act out of character or do things you feel bad about? Source: CASE (NICE Canada 2010 www.nicenet.ca)

34. Some generic tools for prevention • Carers’ support – local maps • Accessing primary care • Risk assessments linked to care and support planning • Enlisting wider communities of interest – paramedics, fire services, primary care.

35. Neglect 'Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

36. Disclaimer This presentation includes independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP-PG-0606-1005). The views expressed in this publication are those of the researcher(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

37. Resources:Phair L, Heath H (2010) Neglect of older people in formal care settings part one: new perspectives on definition and the nursing contribution to multi-agency safeguarding work: Peer reviewed research paper. Journal of Adult Protection. 12, 3, 5-13.Phair L, Heath H (2010) Neglect of older people in formal care settings part two: new perspectives on investigation and factors determining whether neglect has taken place. Peer reviewed policy and practice paper. Journal of Adult Protection. 12, 4, 6-15.Department of Health (2011) Defining Avoidable and Unavoidable Pressure Ulcers, DH, London.http___www.patientsafetyfirst.nhs.uk_ashx_Asset.ashx_path=_PressureUlcers_Defining%20avoidable%20and%20unavoidable%20pressure%20ulcersOusey K, Fletcher J (2011) Taking pressure ulcers out of the headlines. Wounds. 7, 3, 8-10.National Institute for Health and Clinical Excellence and the Royal College of Nursing (2005) The prevention and treatment of pressure ulcers: Clinical Guideline 29 (under review)European Pressure Ulcer Advisory Panel (EPUAP) and National Pressure Ulcer Advisory Panel (NPUAP) (2009) Quick References Guides: Pressure Ulcer Prevention and Pressure Ulcer Treatment. www.epuap.org; www.npuap.org.Heath H, Phair L (2011) Frailty and its significance in older people’s nursing. Nursing Standard. 26, 3, 50-55. Phair L (2009) The development of the West Sussex institutional care neglect risk assessment tool: a reflective analysis using Mezirow’s transformative learning framework. International Journal of Older People Nursing. 4, 2, 132-141.Heath H, Phair L (2009) Shifting the Focus: Outcomes of care for older people. International Journal of Older People Nursing. 4, 2, 142-153.

38. Jill Manthorpe Professor of Social Work, Director of the Social Care Workforce Research Unit, Associate Director,NIHR School for Social Care Research, King's College London jill.manthorpe@kcl.ac.uk Lynne PhairConsultant Nurse Older People NHS Sussex, Expert Witness, Independent Nurse Adviser in Care for Older People, Visiting Fellow University of Brighton www.lynnephair.co.uk; lynne@lynnephair.co.uk Hazel HeathIndependent Nurse Consultant: Older People, Visiting Senior Research Fellow City University London, Consultant Editor Journal of Dementia Care, Chair Royal College of Nursing Older People Forum www.hazelheath.co.uk; hh@hazelheath.co.uk