Issue 02 Winter 10/11
to the second edition of the
Over the last year we have made good progress.
We have commissioned a further study which
aims to develop a tool to measure the quality of
care in NHS settings. This will allow organisations
to combine information from multiple sources to
inform them of areas of excellence within their
agencies as well as areas for improvement.
We have also established a ‘Preparatory Network’,
funded by Comic Relief, to facilitate the delivery
of the final piece of research within the PANICOA
initiative. We had originally intended a final study on
the prevalence of abuse, neglect and lack of dignity
of older people within residential and nursing home
settings. However, informed by some helpful further
discussions, in spring 2010 we decided to take a
slightly different approach to the remaining study
(described later in this newsletter).
We are pleased to report that three studies within
the PANICOA portfolio have been completed and
final reports can be found on the PANICOA website
We are currently developing new promotional
materials to raise awareness of the PANICOA
initiative within the care home sector and members
of the project team will be attending relevant
conferences through the Autumn of 2010.
studies and we anticipate a ﬁnal study with be commissioned
Background to PANICOA in late 2010. An overview report of ﬁndings will be produced in
2012 when the studies have been completed.
PANICOA (Preventing Abuse and Neglect in the Institutional
Care of Older Adults) is a joint-funded research initiative This exciting collaboration combines Comic Relief’s commitment
between the Department of Health and Comic Relief. Its to promoting the rights of older people with the Department’s
purpose is to: help increase knowledge of the extent of abuse work on the ‘Personalisation and Quality’ agendas, with a focus
and neglect of older people in institutional care; help us to on the quality of service provision for
understand better the context, causes and impact of abuse Further information and
and neglectful practice and to help develop strategies for everyone, including vulnerable adultsIssue 01 can be found on the
preventing, identifying and responding to abusive, neglectful PANICOA website -and those living with
or exploitative relationships. PANICOA has a portfolio of ten dementia. www.panicoa.org.uk
A partnership between the Department of Health and Comic Relief
The Government’s Commitment
Following the May 2010 election, the Department of Health welcomed
its new Ministers, including the Secretary of State, Andrew Lansley and
Paul Burstow, Minister of State for Care Services.
The new Government is committed to a ‘Personalisation and Quality’
agenda in terms of:
Safeguarding vulnerable adults is an important part of
this new agenda and is integral to both personalisation
and quality. Work on the review of the No Secrets
community) seeing safety as part of quality - and being skilled
guidance is progressing. This is cross government work to undertake assessments of quality of life and safety.
involving the Department of Health, the Home Ofﬁce, the
Ministry of Justice and the Department for Communities
The Government is fully committed to continuing to improve the
and Local Government. The work is informed by the quality of care for people with dementia and their carers. It will
10,000 pages of evidence submitted to the consultation accelerate the pace of improvement through a greater focus on
on the review of the No Secrets guidance (which ran from local delivery and accountability and will set in place processes
October 2008 until January 2009). to empower citizens to hold local organisations to account.
The NHS Operating Framework, the document that sets out the
The key messages in the review of the No Secrets guidance national priorities for the planning and delivery of NHS services,
include the importance of: conﬁrms dementia as a key area for local implementation. The
Department of Health is working with key national partners
on a National Dementia Declaration, to deﬁne the contribution
that each organisation will make to support implementation
they wish to be helped, when at risk from harm; of the National Dementia Strategy. This declaration will be
supported by the development of a practical tool to enable
local organisations to self-assess and benchmark their progress
towards implementing the strategy.
family mediation to court prosecutions;
How Can I tell You What’s Going on Here?
The perspective of residents living with dementia
in care homes DAWN BROOKER, UNIVERSITY OF WORCESTER
Our focus is to develop Themes from interviews others might ﬁnd difﬁcult our in-depth time spent with
a way of including the and focus groups led to or unpleasant and residents residents helps us to shed
experience of care home the development of a pilot with sight and/or hearing light on the good practice
tool, which we are now loss. We spend time with each that helps this group of very
residents who have
developing within care homes resident in 15 minute blocks vulnerable people maintain
dementia and additional that have been speciﬁcally over a 2-day period from 3pm- their sense of personhood.
problems that make it recruited for this. In each care 10pm on one day and 9am till
difﬁcult to interview home we select 4 residents 3pm on the second day.
them directly about their who have dementia and
experiences. In our study additional characteristics, We are still in the middle of
we have conducted in- which mean they are most at piloting the tool but we have
depth interviews and focus risk of neglectful or abusive The reason for focusing already learnt a lot about
practice. This includes those on these residents is two- these residents’ lives. We are
groups with family carers,
residents who are least able fold. These residents are due to complete our pilots by
people with dementia and to communicate, had bruising November 2011.
those with professional or probably the most at risk
or other physical warning and have the least power
care home experience. signs, high levels of agitated to withstand neglectful or
behaviour, or behaviours that abusive practice. They are also
the most difﬁcult group to
communicate with. Secondly,
Analysis of Secondary Data
JILL MANTHORPE, SOCIAL CARE WORKFORCE RESEARCH UNIT, KING’S COLLEGE LONDON
This study is taking a different approach to many of settings. Our study is drawing together data from this area
the other studies in this programme. It is investigating and other new sources of information; such as referrals to
existing data about mistreatment and neglect in care Independent Mental Capacity Advocates (IMCAs) who have the
potential to work with people lacking decision-making capacity
homes and hospitals. These are collected in various ways
about whom there are concerns of possible abuse.
and have their advantages and disadvantages.
Our study has been extended in length to take on board some But this study is not just a paper exercise – valuable though
of the current changes arising from the change of government. that is. We have interviewed 15 people about their perceptions
This includes, for example, the review of the vetting and of what data is useful and where the important gaps are.
barring scheme established by the Safeguarding Vulnerable These perspectives are from the ﬁeld of policy, regulation, adult
Groups Act 2006. There has been a great deal of controversy safeguarding services and care provision. These interviews have
around this Act concerning volunteers and other people been analysed to draw out common themes and to identify
working with children. However, the predecessor Protection of what information is useful to whom.
Vulnerable Adults scheme (POVA) was a source of good data The full report will synthesise theseContact email:
about adult safeguarding; although it was limited in respect email@example.comﬁndings – we look
of the information it provided and of course did not cover NHS forward to readers’
comments about this study.
Abuse, Neglect and Lack of Dignity in
Institutional Care of Older People
JOSIE DIXON, NATIONAL CENTRE FOR SOCIAL RESEARCH (NATCEN) AND
SIMON BIGGS, INSTITUTE OF GERONTOLOGY, KING’S COLLEGE, LONDON
Deﬁnitions have been a long-standing issue in the study be measured. The report makes a range of recommendations
of elder mistreatment. Mowlam et al. (Comic Relief/ concerning the concept of trust, the relative balance between
DoH, 2007) and Dixon et al. (2009) highlighted the a ‘perpetrator’s’ intentions and impact on the ‘victim’ and the
need to consider perpetrator characteristics. Also of importance
conceptual ‘slipperiness’ of concepts like ‘abuse’ and
were context and organisational characteristics as well as
‘neglect’ and inconsistency of deﬁnitions was also noted victim characteristics when looking at risk factors, types and
by CSCI in ‘Raising Voices’ (CSCI, 2008a). In response to categories of abuse, the use of thresholds and qualiﬁers and the
these concerns, this project aimed to explore and clarify importance of speciﬁc language and concrete examples. Asking
issues relating to the deﬁnition, operationalisation and about concrete behaviors and subjective reactions separately
measurement of key concepts for research, focusing on and distinguishing between individual perpetrators and
residential care. organisational responsibility were also signiﬁcant. A range of
other research design issues are also considered in the report.
The researchers mapped existing deﬁnitions and descriptions
of mistreatment and loss of dignity; ran seminars with a
group of experts by experience and with academics and The study also reﬂected on the theoretical implications for the
representatives from NGOs, private sector organisations, policy study of mistreatment and lack of
and Government; and conducted interviews with researchers dignity, with a focus on theorising the
conducting similar research in other countries and six residents Contact email:
living in nursing care settings. role of the organisation in the abuse,firstname.lastname@example.org
neglect and loss of dignity of older
people in residential care.
Our study and ﬁnal report concluded that there is a need for
clear, unambiguous deﬁnitions so there is agreement on what is
being measured, even if there is disagreement on what should
Abuse and Neglect of Older People:
Secondary Analysis of Prevalence Survey Data
BOB ERENS AND MELANIE DOYLE-FRANCIS, NATIONAL CENTRE FOR SOCIAL RESEARCH (NATCEN)
SIMON BIGGS, INSTITUTE OF GERONTOLOGY, KING’S COLLEGE, LONDON
The UK Study of Abuse and Neglect of Older People Our secondary analysis of the UKPS data has examined
(UKPS) collected data on 2,111 older people, aged 66 different deﬁnitions of mistreatment and associated risk
and over across the UK. In this secondary analysis of factors, using multivariate analysis to examine the risk factors
‘in context’ and developing a merged dataset that combined
data from the original study, the baseline deﬁnition of
UKPS data with that from an earlier health survey. Using this
mistreatment (ﬁnancial, psychological, physical and data and analysis, we found that marital status, depression,
sexual abuse and neglect) was extended to include single quality of life and use of regular medication were associated
incidents of neglect and psychological abuse (rather than with overall mistreatment, regardless of which deﬁnition
10+ in the last year) and mistreatment by neighbours was used (either the baseline deﬁnition or the expanded
and acquaintances (outer circle perpetrators) as well as deﬁnition). Quality of life also appeared to be associated with
family, friends and care workers (inner circle). With this all types of mistreatment, except for physical abuse. Other ‘risk
expansion, the prevalence of mistreatment increased factors’ varied by type of mistreatment and the deﬁnition that
was used. Analysis of the merged dataset revealed apparent
across the deﬁnitions from 2.6% (with the original
associations between falls, mobility problems and views of the
study data, using the baseline deﬁnition) to 8.6% (using local neighbourhood and overall mistreatment. Implications for
the extended deﬁnition in this the relative independence and clustering of particular forms of
secondary data analysis) when mistreatment are discussed in the ﬁnal report, available from
Contact email: www.panicoa.org.uk
all incidents and all email@example.com
Dignity and Respect in Residential Care:
Issues for Black and Minority Ethnic Groups
ALISON BOWES, UNIVERSITY OF STIRLING
This study aims to develop understanding of the
experiences of black and minority ethnic (BME) groups
in institutional care for older people and to explore
potential issues of abuse, neglect and loss of dignity in
Little is known of the experiences of BME older people in
residential care and research on mistreatment is limited.
We have collected data in seven care homes across the UK,
interviewing residents and their families, managers and care
staff. We have also conducted Dementia Care Mapping in
these homes to explore the quality of care that is provided
to individuals. Our residents come from the broad categories
of South Asian, African-Caribbean, Chinese and European
minorities. The interviews we have conducted have focused
on experiences in care homes in a general way, exploring
both good and bad experiences, using a semi-structured topic
guide. In analysing the results, we are identifying examples
of good practice in responding to people’s individual needs,
and in addressing issues of ethnicity.
The study is currently being written up, and the ﬁnal report
will be ready in late Autumn 2010.
We are part way through our third and fourth case studies,
ResPECT: Respect in which are in two different parts of one care home. So far
we have worked with a range of providers in local authority,
independent and charitable care
Providing Elder Care homes and are planning to include
Contact email:case studies
and Treatment from the corporate
sector and an example of NHS long
ANNE KILLETT, UNIVERSITY OF EAST ANGLIA term provision.
Our study of what happens between residents, workers,
managers and visitors in care settings is examining
circumstances which contribute to good care or to
mistreatment of older people.
We are working closely with older people in planning the
research and in carrying it out. We have seven older people who
have joined us as peer researchers. Between them they have
had sessions learning about research, this project, carrying
out interviews, doing observations and analysing data. This
involvement has been demanding and thought provoking for
all of us. Peer researchers have brought sharp insights and a
constant reminder of the perspectives of residents, including
for example of the impact of the research on residents.
We have fed back ﬁndings on our ﬁrst two case studies.
Managers, staff and residents have been interested to hear
and to discuss our early ﬁndings. Staff have been moved to hear
that efforts to provide sensitive, carefully negotiated personal
care are appreciated. It is not always easy, however, for those
providing care to engage with the perspectives of residents when
these are more critical.
Challenging Care: The Role and Experience of
Health Care Assistants in Dementia Wards
JUSTINE SCHNEIDER, UNIVERSITY OF NOTTINGHAM (FUNDED BY THE NIHR SERVICE DELIVERY AND ORGANISATION)
The overall aim of this study was to understand the Findings fall into two broad themes: the process of caring in
subjective experience of staff who work directly with terms of its motivations and rewards; and the impact of caring,
older people with dementia, in order to improve front- in terms of stress and coping (its management at individual
and organisational levels).
line dementia care. It asked:
1. What motivates staff? ‘Relationship-centred care’ may be a better framework for
understanding the work of health care assistants than
2. What obstacles to good care do they face? ‘person-centred care’, because the network of relationships
on the ward was found to be vital to dementia care; staff need
3. What do they ﬁnd stressful and how do they cope? to relate to each other and to patients’ families if they are to
4. What appears to promote staff wellbeing?
5. What are the implications of these ﬁndings for person-
centred care, which is set as a standard of good practice? Health care assistants are skilled workers who make a
distinctive contribution to the care experienced by patients
Participant observation was conducted over four months in with dementia and whose capabilities directly affect the
2008-09 in three dementia care wards within one mental quality of that care. This conclusion has implications for
health trust. Three researchers worked as part-time, acute, as well as specialist, hospital provision and may also
supernumerary health care assistants, each in a different ward. be applicable to residential and nursing home settings where
Further data was collected through interviews and Dementia health care assistants make
Care Mapping on the ward, and focus groups were held both up the vast majority of staff.
with ward staff and with ‘informal’ carers. This approach
emphasised the experiences of direct-care staff, primarily
health care assistants. Contact email:
Dignity in Practice: An Exploration of the
Care of Older Adults in Acute NHS Trusts
WIN TADD, CARDIFF UNIVERSITY (FUNDED BY THE NIHR SERVICE DELIVERY AND ORGANISATION)
This project led by Cardiff University in collaboration Seeing the person in the bed Wards are very much nurses’
with the University of Kent investigates the provision of spaces rather than patients. The emphasis on tasks and
care for older people in acute hospital wards in four NHS completing the work results in missed opportunities
to engage and build relationships. Social engagement and
Trusts in the UK and speciﬁcally focuses on the extent
isolation in hospital is an issue for many older people in
to which dignity for older people is maintained. 176 acute hospitals.
post discharge interviews of older people, their informal
carers, senior Trust staff and ward staff have been held
together with 617 hours of observations of care on 4
wards in each Trust. Whose interests matters? There is often signiﬁcant conﬂict
between the perceived interests of the Trust, the ward and
the patients, which together impacts on many aspects of care
On going data analysis has identiﬁed 4 major themes:
Right place-wrong patients Some patients are seen as not What makes dignity difﬁcult to achieve and what makes it
‘belonging in the respective ward’ especially those who easier? Resources, health and safety requirements, ward
are confused or demented, those experiencing delayed culture, leadership, education and training all impact
transfer of care and ‘outliers’. This results in some people’s positively or negatively patients’
needs being ignored/unmet, much patient movement and experience of digniﬁed care.Contact email:
Organisational Culture in the NHS: A Feasibility
Study to Measure the Impact on Older People.
SINEAD O’MAHONY, CARDIFF UNIVERSITY
Investigations such as that into the Mid Staffordshire understand by excellent care and the factors that determine
NHS Foundation have highlighted sub standard care quality of care of older people in hospital. We will also observe
of older people in hospital. It is important to measure care on hospital wards in these Trusts.
quality of care, so we can improve care and prevent
abuse and neglect of older people. Data including pressure ulcer rates, hospital acquired infections,
registers of adverse events and complaints will be examined and
compared to case notes to see if we can identify indicators of
We want to ﬁnd out the best method or combination of abuse or neglect from existing sources of information.
methods to use, to measure the occurrence of abuse and
neglect of older people in hospital. We want to develop a
tool that allows organisations to combine information from We will see if we can combine information from several of these
multiple sources to inform them re areas of excellence within methods to give a global measure of quality of care. We will
their organisations as well as areas for improvement. produce guidance for policy makers and hospitals on how best
to recognise and measure excellence in care and the extent of
abuse, neglect or mistreatment of
older people in hospital.
Patients, carers and staff on selected wards in four hospitals Contact email:
in England will be interviewed to ﬁnd out what people
“The Relatives & Residents Association is delighted to endorse
PANICOA’s work. This important research is designed to produce
practical results to enhance the dignity and improve the experiences
of older people in institutional settings. We wish it every success.”
JUDY DOWNEY, A RELATIVE, AND CHAIR OF THE THE RELATIVES & RESIDENTS ASSOCIATION
Promoting Excellence in All Care Homes (PEACH)
Exploring Knowledge, Practices and Training
Needs of the Care Home Workforce
WIN TADD, CARDIFF UNIVERSITY
The PEACH project uses a multi-method approach to impacts on effective team building and on the ability of staff to
explore best practice, training, job satisfaction and gain a sound knowledge of residents’ needs.
wellbeing of the care home workforce and to determine
the contexts in which abuse, neglect and lack of dignity Recruiting the ‘right kind’ of staff is also an issue–no entry
occur to staff and residents. qualiﬁcations or aptitude testing are required. Stafﬁng levels are
To date 491 hours of observation have been undertaken, Elderspeak is a daily occurrence in some homes, as is outpacing
together with 32 interviews, and 68 questionnaires completed and disempowerment of older people. These practices can
in 8 care homes. Two rounds of focus groups with care increase the occurrence of challenging behaviours. Many care
home managers, owners, residents and relatives have been workers interpret ‘digniﬁed care’ as simply providing privacy.
undertaken, and the third round will follow. Almost all interviewees had witnessed a lack of digniﬁed care,
rough handling and/or abuse.
Analysis is ongoing, however there is a wide variation between
care homes and between individual staff members within them. A plethora of training materials exist but quality is difﬁcult to
judge. Care workers dislike e-learning packages or just watching
Resource issues surrounding recruitment, retention and training a DVD. An approach to training
of staff is a signiﬁcant factor in maintaining standards of care. to ﬁt the new requirements for
Due to recruitment & retention problems some homes recruit
from overseas, at times leading to issues of language and registration is being firstname.lastname@example.org
communication between staff and staff and residents. Retention
difﬁculties result in homes constantly training new staff, which
Commissioning the ﬁnal study – PANICOA
Within the PANICOA programme, the original aim was inhibit, the provision of high quality of care for older people living
that the ﬁnal study in the research initiative would be a in residential and nursing homes. Although the study will not
prevalence survey of abuse, neglect and lack of dignity of try to establish overall prevalence rates for neglectful or abusive
practice, it will seek to ascertain the relative frequency of different
older people within care homes (residential and nursing
types of positive and adverse experiences.
Approach: In order to develop an appropriate methodology
This was to complement the earlier prevalence study undertaken
for the ﬁnal study, a Preparatory Network has been set up. Four
in a community setting in order to provide a fuller assessment
teams of researchers from different institutions are taking part in
of the prevalence of elder abuse and neglect. However, informed
the Network, which is being lead by the University of East Anglia.
by some helpful further discussions, in spring 2010 the PANICOA
The Network is tasked with developing a suitable proposal for
project team decided to take a slightly different approach to the
the study and this will be submitted to the Panicoa project
team for review in Autumn 2010. The outcome of the submitted
proposal and the review process will be reported in the next
edition of the newsletter.
The proposed ﬁnal study in the PANICOA programme will now
have a broader focus: it will examine both positive and negative
care experiences, the context in which they occur and the
principal factors that have positive or negative impacts when Contact email:
they occur. A key aim of the study will be to identify examples of email@example.com
empowering practice within the institutional care of older people.
The study will help to establish the individual circumstances,
organisational cultures and practices most likely to encourage, or
Advisory Group update
The PANICOA Advisory Group was established in December This will be enabled by shifting the focus of research from ‘abuse/
2009 and to date has held two well-attended and stimulating mistreatment’ to the identiﬁcation of good practice and the
meetings. The ﬁrst, in December, combined a ‘business’ meeting delivery of quality care. (The papers from both meetings can be
with brief presentations on each of the then nine PANICOA found on the PANICOA website). The next meeting will be held
studies. This enabled the members – and the invited researchers in December 2010.
– to get a good impression of the wide range of topics covered
by PANICOA and how the individual studies complement each
other. At the second meeting in June 2010, the Group welcomed
two new members, Prof Julienne Meyer, Executive Director of
My Home Life programme, and Adi Cooper, Strategic Director for
Adult Social Services & Housing, London Borough of Sutton.
The discussion focused on the challenges and rewards of
undertaking research in care homes with the participation of
residents and staff. The composition of the care home sector
has changed over the last twenty years, with the local authority
as the leading provider being replaced by private owners with
commercial interests. The incentive to participate in research
may not be strong, particularly where the focus is on abuse
and mistreatment. Researchers therefore need to work
actively with the care homes as partners to demonstrate that
participation in research can result in ‘winners’ on all sides.
PANICOA project team and contact details
A PANICOA project team has been established to support the Clare Croft-White is PANICOA’s project manager, funded by
research initiative in achieving its goals. It has the following Comic Relief.
Dr Carol Lupton and Gilly Green lead PANICOA on behalf of the firstname.lastname@example.org
Department of Health and Comic Relief respectively.
Email: email@example.com Farheen Shaﬁq is employed by NIHR Central Commissioning
firstname.lastname@example.org Facility and is responsible for all PANICOA contractual issues.
The Department of Health is also represented on the Project
Team by Michelle McDaid.
Bridget Penhale from the University of East Anglia, is the
Scientiﬁc Advisor for PANICOA.
Comments on this Newsletter and suggestions for the contents of future editions should be addressed to Clare Croft-White.
Department of Health’s Policy Research Programme
The Policy Research Programme (PRP) is a national research funding programme in the Department of Health’s (DH) Research and Development
Directorate. It commissions high quality research across the full policy remit of the DH, including public health, social care and the NHS.
The PRP works alongside the National Programmes in the National Institute for Health Research (NIHR) which commissions research for the NHS.
Comic Relief (CR) is a UK-wide charity that was established over two decades ago. Its vision today remains much the same as in 1985 when it was
launched from a refugee camp in Sudan – and that is a just world, free from poverty. Comic Relief raises money to invest in long-term development
to create demonstrable, sustainable change in the UK and across the developing world. Comic Relief has so far raised over half a billion pounds to
support projects that give the poorest and most vulnerable people the help they need to turn their lives around. This includes work to promote the
rights and meet the needs of older people in the UK.