Berzin S 2018
Berzin S 2018
Berzin S 2018
Abstract
Background: Previous research into improving patient safety has emphasised the importance of responding to and
learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and
their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of
raising concerns within mental health services, and the potential benefits of involving service users and carers in
safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and
service user, carer and health professional views on the potential for service user and carer involvement in safety
interventions.
Methods: UK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-
sectional survey focussed on raising concerns about safety issues and views on potential service user and carer
participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were
coded into categories.
Results: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy
seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most
frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the
process of raising concerns, especially while experiencing mental ill health. There was universal support from health
professionals for service user and carer involvement in safety interventions and over half the service users and
carers supported involvement, primarily due to their expertise from experience.
Conclusions: Mental health service users and carers experience difficulties in raising safety concerns meaning that
potentially useful information is being missed. All the health professionals and the majority of service users and
carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their
experiences are taken into consideration. The results provide guidance for future research about the most effective
ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer
involvement in improving safety in mental health care can be further developed.
Keywords: Health services research, Mental health services, Caregivers, Inpatients, Patient safety, Attitude of health
personnel, Surveys and questionnaires
* Correspondence: [email protected]
1
School of Healthcare, University of Leeds, Baines Wing, Woodhouse Lane,
Leeds LS29JT, UK
Full list of author information is available at the end of the article
© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Berzins et al. BMC Health Services Research (2018) 18:644 Page 2 of 8
Background [21]. To date there has been minimal research carried out
Improving patient safety has been a priority in health care within a mental health care context around raising and
for nearly two decades [1] and the subject of a significant responding to concerns and the involvement of service
body of research and innovation. In the UK, high profile users and carers in safety interventions (Berzins K, Eames
cases of failures in health care, such as those in Mid S, Newbronner L, Baker J, Thompson C: Service user in-
Staffordshire NHS Trust have reinforced the need for volvement in interventions designed to improve safety in
this focus in general care. The resulting Francis Report acute mental healthcare environments: a scoping literature
[2] and the Keogh Report into quality of care across 14 review, submitted). Given the emergent evidence from
other Trusts [3] particularly stressed the need for patient acute hospital and primary care settings, service user and
involvement in the monitoring and inspection of services carer involvement could have an important role to play,
and service responses to complaints. It has long been ac- but given the specific context of mental health care, evi-
knowledged that patient complaints are a crucial tool to dence cannot simply be transferred. This study set out to
facilitate service improvements [4]. The Parliamentary explore how service users and carers felt about the ease of
Ombudsman described a reluctance of people to make, raising safety concerns, their views of involvement in
and of Trusts to listen and respond to complaints, as a safety interventions as well as those of health profes-
‘toxic cocktail’ [5]. Figures from 2015 show that of all com- sionals, to understand how we might promote service user
plaints made to Trusts very few are upheld (1.1% of all and carer involvement in safety to be taken forward by fu-
complaints to mental health Trusts and 1.8% of those to ture research. This study had two aims:
hospital Trusts).
Contrary to these developments in acute hospital and (1) To explore mental health service users’ and carers’
primary care settings, there has been little comparable experiences of raising concerns about safety in
research into the identification of safety issues in UK mental health care services;
mental health care services despite serious failures in (2) To explore service users’, carers’ and health
service provision [6]. This is particularly important given professionals’ views on the potential for service user
that it was a mental health Trust that was the first to be and carer involvement in future safety
prosecuted post-Francis Report under new powers by interventions.
the Care Quality Commission for failing to provide safe
care and treatment [7]. One crucial aspect of improving Methods
patient safety is the potential for involving patients and This paper reports data from a broader study that primarily
their families as a resource for increasing safety by pro- sought to identify safety issues in mental health care, as
viding feedback either during or after their care experi- such, more detailed information of the study method
ence. Patients and families are well positioned to notice including that relating to procedure and participants
things that staff do not [8] and provide an independent has been reported previously [22].
perspective based on their experiences of receiving care
[9]. Evidence has shown that patients can willingly and Design
meaningfully feed back on the safety of their care [10–14]. A cross-sectional structured survey developed for this study
However, research on how to involve patients in interven- was conducted with recruitment via social media (Twitter).
tions to improve safety and whether there are any benefits, This method of recruitment has been found to be effective
is generally thought to be inconclusive [15]. Interventions in reaching potentially stigmatised groups [23]. Participants
have also involved patients directly intervening in their were eligible if they were over 18, and had recent experience
care, receiving education about their condition and (within the past 2 years) of using mental health care ser-
feeding back about their experiences [16]. Research in vices, caring for someone using mental health care services,
acute hospital and primary care settings has found that or experience of working in mental health care services.
patients are often willing to participate in interventions
but are apprehensive about negative repercussions from Data collection
raising concerns and question whether it is their responsi- Approval for the study was sought from the University
bility to do so [17, 18]. One area that is relatively well of Leeds, School of Healthcare Research Ethics Committee
developed in mental health care services is the principle (reference HREC15–059). At the beginning of the survey
of service user involvement which has been shown to participants were given information about the study and
improve several aspects of service, for example, better sources of support. Consent was implied by completion
reflecting needs and preferences [19]. However, the and submission of the survey. The survey questions were
context of mental health care is unique, service users informed by consultation with service users, carers and
can be at risk of compulsory treatment [20], experience health professionals and the patient safety literature. The
high levels of stigma and low levels of social participation questions were focussed on the ease of raising concerns
Berzins et al. BMC Health Services Research (2018) 18:644 Page 3 of 8
and reasons why; whether service user and carer participa- Ease of raising concerns
tion should be part of future interventions to improve All participants were asked how easy they had found it to
safety, reasons why or why not; and individual willing- raise concerns about safety issues. A high rate of service
ness to participate in such developments [24]. Ques- user and carer participants (73 of 95; 77%) reported
tions took different formats, some used a Likert scale finding it very difficult or difficult to raise concerns (see
(In your experience how easy has it been to raise con- Table 2).
cerns about safety in mental health care? Very easy The salient (in terms of frequency) service user and
/ easy / neither easy nor difficult / difficult / very diffi- carer explanations for difficulty in raising concerns were
cult), some permitted multiple responses and others free that services do not listen (27% of cases; n = 22); concern
text responses, which allowed respondents to provide ex- about repercussions (19% of cases; n = 15); the process of
amples and to elaborate on closed questions. To maximise raising concerns (16% of cases; n = 13); and the difficulty
completion of the survey, no responses were mandatory ex- of raising a concern while experiencing mental ill health
cept two initial screening questions. Data were collected (14% of cases; n = 11). Several service users thought that
between September and December 2016. their concerns were dismissed as being caused by their
mental health difficulties. These difficulties were further
Data analysis supported by the information provided in the free text
Quantitative data were analysed using SPSS [25]. Service responses, as these excerpts illustrate:
users’ and carers’ views were analysed separately from
health professionals’ views and descriptive statistics were ‘If you raise any issues or challenge any decision you
performed to describe the characteristics of the two are seen as a difficult patient. You are not expected to
groups. For closed questions, results are presented in have a valid viewpoint. They know best. They can
terms of percentages, and for questions that permitted make life very difficult, refuse to help you, and most
multiple responses, results are presented in terms of likely change your diagnosis to personality disorder so
percentage of cases. Data from questions that allowed free that no one will want to treat you.’ (Service user #5).
text responses were coded into categories, then counted
to provide quantitative data and the original free text re-
sponses used to illustrate the quantitative findings. ‘I find it extremely hard to speak up for myself...
When I have done I have been told because of my
Findings illness my opinions aren’t valid. I worry that my
Sample characteristics diagnoses render my opinions and suggestions
The demographic characteristics of the respondents are worthless.’ (Service user #23).
presented in Table 1. The sample of 185 consisted of 90
health professionals (49%), 77 service users (41%) and 18
carers (10%). There were more females than males in both ‘It was difficult to raise concerns when I was on an
groups (75%; n = 71 of service users and carers; 71%; n = inpatient ward; I was very distressed and very unwell
64 of health professionals) and the majority of participants so not easy to articulate concerns.’ (Service user #29).
described themselves as White British (76%; n = 72 of ser-
vice users and carers; 72%; n = 65 of health professionals).
Registered nurses were the largest health professional Service user and carer involvement in interventions to
group (22%; n = 20) with managerial roles of different address safety issues
disciplines being the second largest (19%; n = 17). The second aim of the study was to collect views about
Service users and carers were asked to describe their the potential for service user and carer involvement in
mental health problem or that of the person they cared interventions to increase safety in mental health care
for. Many participants gave multiple responses, most services, an area of rapid growth in other health care
commonly, depression and anxiety (44%), post-traumatic settings. There was a great deal of support for involving
stress disorder (17%) and personality disorder (16%). Forty service users and carers in safety interventions by health
three percent (n = 40) had experienced detention under professionals with 81% (n = 73) reporting that service
the Mental Health Act. users and carers should be involved, and the remaining
The survey results are presented in two sections (1): 19% (n = 17) reporting that they should sometimes be
service users’ and carers’ perceptions of ease of raising involved. For both groups, the main perceived benefit
concerns; and (2) all participants’ perceptions of service of service user and carer involvement was that they can
user and carer involvement in interventions to address bring their expertise from experience to issues (Service
safety issues. Excerpts from the free text responses are users and carers 24%; n = 19 and health professionals
used to further emphasise the key quantitative findings. 26%; n = 20).
Berzins et al. BMC Health Services Research (2018) 18:644 Page 4 of 8
Table 2 Participant responses regarding ease of raising Benefits perceived by health professionals were broader
concerns about safety with the empowerment of service users (24%; n = 18) and
Group Frequency Percent the promotion of teamworking (18%; n = 14):
Service users and carers Very easy 1 1.1
Easy 4 4.2 ‘Because they are important allies in improving care.’
Neither 16 16.8 (Health professional #2).
Difficult 35 36.8
When asked if they personally would be willing to be in-
Very difficult 38 40.0
volved in safety initiatives, nearly all health professionals
Berzins et al. BMC Health Services Research (2018) 18:644 Page 5 of 8
said they would be (91%; n = 82) with the remaining 9% When asked whether they personally would be prepared
(n = 8) reporting sometimes, depending on available support. to be involved in improving safety, service users and carers
were less favourable than health professionals in their
‘I would be keen to be involved but have so little time responses (all of whom indicated that they would always
within work role I would not be able to commit to or sometimes personally support service user and carer
anything extra to role and would not receive managerial involvement). Over half of the service users and carers
support to do so.’ (Health professional #134). (63%; n = 58) said ‘yes’, nearly a third (27%; n = 25) said
‘sometimes’ and 11% (n = 10) indicated ‘no’. Those who
Health professionals’ reasons for personally partici- said they personally would be (sometimes) willing to
pating echoed valuing the perspective of service users participate suggested that was because their perspective
and carers (21%; n = 21), the potential for involvement was useful (27%; n = 19) and might contribute to im-
to promote service user recovery (19%; n = 19) and proved safety (26%; n = 18):
team working (15%; n = 15).
‘Having felt unsafe so often I feel I have a lot to offer
‘I can’t think of a reason why I wouldn’t! Service users which staff could learn from.’ (Service user #100).
have a very important view of services, can see things
a professional might miss/ignore.’ (Health professional ‘I would be happy to do anything to improve mental
#105). health services in general for future generations,
myself and other service users. I think major change
Service users and carers did not feel quite as positive does need to happen.’ (Service user #5).
towards participation with 63% (n = 60) indicating that
service users and carers should be involved, and just
over a quarter saying they should sometimes be involved ‘I am passionate about these issues as I am what I
(27%; n = 26). Only 8% (n = 8) thought that service users consider to be a “near miss”. I have been harmed by
and carers should never be involved. The reasons provided the system but remain committed to improving it for
by those who suggested there should never be involvement other service users, carers and for staff whom I have
of service users and carers included carers being too busy, also seen harmed.’ (Service user #18).
and respondents not perceiving it as being the responsibil-
ity of service users and carers. Health professional participants agreed on the potential
usefulness of service user and carer perspectives (26%;
‘The onus should be on paid staff to take care of these n = 20) followed by it being a potentially empowering
things, without reliance on unwell people to plug gaps experience for the service user or carer (23%; n = 18) and
in the NHS.’ (Service user #121). promoting collaborative working (18%; n = 14):
support from health professionals and support from over the experiences of others that they could contribute to
half the service users and carers for service user and carer interventions to improve safety. For example, service user
involvement in safety interventions, primarily due to their perspectives on staff behaviour could inform interventions
expertise from experience. to reduce aggression; carers’ experiences of seeking infor-
Inquiries into care failures in other health care settings mation could change discharge procedures. This willing-
have stressed the importance of listening and learning ness to participate supports the findings in the general
from issues raised by patients [2, 3], yet the findings of health care literature [12, 13], although there were similar
this study suggest we are some distance from achieving this reservations made about the main responsibility remaining
in mental health care. Service users and carers described with health professionals and there being occasions when
difficulties at all stages of the process, reluctance to initially service users would be too ill to participate [16].
raise a concern, concerns either not being listened to nor A declared willingness to participate does not of course
concerns being formalised but there being no response, but translate to meaningful involvement and those who partici-
most striking was service users’ fear of repercussions. A pate may subsequently lack the diversity of the overall
major feature of the mental health care system is the service user population [29]. This diversity within service
presence of coercion, particularly in the hospital setting; a users and carers means that there will need to be a diver-
marked imbalance of power between health professionals sity of methods used when striving for meaningful involve-
and service users that might understandably make service ment in both research and subsequent safety improvement
users reluctant to voice concerns both at the time of the interventions [29] as well as offering opportunities for both
concern or retrospectively, as they might come back into short and long term involvement [30].
contact with the same service on a regular basis. Some Given the paucity of existing evidence about the role
service users believed that their concerns would be dis- of service users and carers as ‘co-producers’ of safety
missed as being caused by their illness, seen as delusional within mental health settings, one of the obvious impli-
or even malicious, although research has shown this to be cations of our findings is the need to co-design methods
a rare occurrence [26, 27]. Many service users will have for the systematic and routine gathering of information
waited a long time to receive mental health care and may about the safety of care and care services. However, those
feel unable to raise concerns for fear of losing that service, attempting to routinely gather feedback from service users
meaning that services will not become aware of concerns and carers should proceed with caution. From the wider
and, therefore, be unable to respond. The fear of being literature on the involvement of ‘patients’ in patient safety,
seen as ‘difficult’, and the perceived threat of this contribut- it is evident that currently, there is no real consensus
ing to a diagnosis of personality disorder, has no parallel about the best way to achieve the systematic gathering of
in general health care; this was mentioned by more than feedback about the safety of health care services, and that
one respondent and there is significant stigma attached, there may need to be multiple mechanisms if this is to be
including inadequate treatment [28]. Furthermore, even if meaningful [30]. Indeed, some authors have recently
a service user or carer is prepared to raise an issue, it described feedback from patients (service users) and
seems that the process may be difficult and not result in carers as ‘soft intelligence’ that does not fit within existing
any change or even response, which may act as a barrier mechanisms of gathering and acting on formalised metrics
to future reporting and reduces the potential to learn from for managing services [31], or managing risk [29]. Further,
service user concerns about their experiences. These find- current mechanisms for routinely collecting ‘patient feed-
ings suggest that interventions aimed at improving safety back’ – such as the ‘friends and family test’ risk organisa-
by using concerns raised by service users and carers as a tions believing that they are engaging with the views of
basis, may be more successful if service users and carers those using services, when the reality is likely to be that
are directly involved in their development and they provide little or no information that can actually be
implementation. used to improve services [32]. Thus, whilst our findings
To date, there has been little empirical exploration of suggest that mental health care services would welcome
the willingness of service users and carers to participate in feedback from service users and carers about safety to
interventions designed to improve safety and also of the address concerns and improve services, operationalising
willingness of mental health professionals to collaborate to this at a service or organisational level might not be
this end. The health professionals in this sample straightforward. However, it is arguable that not collecting
universally felt there was a role for service users and carers feedback represents a missed opportunity for organisa-
in such ventures and although there was not as high a tional learning, as this type of information may well
level of support for involvement from service users and represent factors that may contribute to future patient
carers, nearly two thirds thought they should always be safety problems [16], and as such, if collected routinely,
involved. Both groups thought service users and carers had may have the potential to inform services and improve
expertise gained through their experiences and witnessing the safety of mental health care.
Berzins et al. BMC Health Services Research (2018) 18:644 Page 7 of 8
Strengths and limitations service user and carer involvement in improving safety in
This was a cross-sectional study using survey data. The mental health care can be developed at individual, service
sample contained more women and less than a quarter and system level.
of participants came from minority ethnic groups. We
already know that some ethnicities are over represented Conclusion
in mental health services, particularly in detentions under Overall, our findings suggest that mental health care
the Mental Health Act. It may be that these groups feel service users and carers experience difficulties in raising
even more powerless to raise concerns. Therefore only concerns about the safety of health care services. Services
limited generalisability of these findings can be claimed; were perceived to be unresponsive to complaints and ser-
however, in the absence of any knowledge about this area vice users feared repercussions if they raised a concern.
prior to this study, we do provide a starting point for This indicates that services are unlikely to receive this
more in-depth work in this area exploring the needs of potentially useful data that could inform interventions to
particular groups such as people detained under the improve safety. All health professionals and the majority
Mental Health Act and those with a range of other char- of service users and carers surveyed thought that there
acteristics (gender; age; diagnosis, in particular complex was potential for service user and carer involvement in
trauma). Future research looking specifically at these developing interventions to improve safety informed by
groups is recommended as well as research looking at their experiences. The results of this study provide guidance
different service settings such as those for inpatients or for future research.
community based services.
The sample was by its nature limited to those people Abbreviation
PMOS: Patient Measure of Safety
using social media. There is also the tendency for people
to link with organisations and individuals who reflect their Acknowledgements
own beliefs. Thus, this may mean the sample was biased We would like to thank all the people who participated in this study by
further, although the on-line mental health community of sharing their views and experiences.
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