Neglect Workshop
8th February 2012
Jill Manthorpe, Lynne Phair
and Hazel Heath
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
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
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.
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.
One year prevalence of
mistreatment & neglect
(family, friends, care workers)
Total (%)
95% confidence
intervals
Estimated no. in
UK population*
Any mistreatment
2.6
1.9 to 3.8
227,000
Neglect
1.1
0.6 to 1.8
93,200
Financial
0.7
0.3 to 1.3
56,600
Psychological
0.4
0.2 to 1.0
38,600
Physical
0.4
0.2 to 1.1
38,100
Sexual
0.2
<0.05 to 1.1
13,100
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)
One year prevalence - broader definition
(i.e. including neighbours & acquaintances)
Broader
definition (%)
95% confidence
intervals
Estimated no. in
UK population*
Any mistreatment
4.0
3.0 to 5.3
342,400
Neglect
1.2
0.7 to 2.0
105,000
Financial
1.0
0.6 to 1.8
86,500
Psychological
0.7
0.4 to 1.3
58,600
Physical
0.7
0.4 to 1.4
62,400
Sexual
0.5
0.2 to 1.2
42,500
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)
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
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.
Poor care … neglect …
or ‘just one of those things’?
Lynne Phair and Hazel Heath
Examples of situations which can alert to possible neglect
WHEN 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)
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
Pressure ulcer risk factors include:
•
•
•
•
•
•
•
•
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
MOST PRESSURE ULCERS ARE AVOIDABLE
Definition 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)
Occasionally pressure ulcers are unavoidable
Definition 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)
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
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).
The process of damage and repair in humans
A
B
C
The process of frailty development
D
E
F
STAGES IN FRAILTY DEVELOPMENT
PRECURSOR
STAGE
 
FRAILTY
ADVANCED STAGE
COMPLICATIONS OF FRAILTY
reducing individual reserve capacity in health, functioning and wellbeing
  
THRESHOLD
Indicators can identify
individuals vulnerable
to deterioration
(e.g. falls)
Screening tools can
predict the development of frailty
  
THRESHOLD

  
Life is threatened
Timely, effective and
compensatory
intervention is
essential to
sustain life
A range of tools and interventions are necessary
   reserve capacity can be boosted through interventions which enhance
capacity to flourish    and through compensatory care   
(Heath and Phair 2009)
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).
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.
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
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).
Implications of frailty for care or neglect
Examples: Neglect or not neglect?
Questions and answers
• In small groups please identify
three questions arising in practice.
• We will then discuss these.
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
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 92year-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
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
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
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)
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.
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
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.
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%20a
nd%20unavoidable%20pressure%20ulcers
Ousey 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.
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 Phair
Consultant 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 Heath
Independent 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