Small et al. BMC Psychiatry (2017) 17:138
DOI 10.1186/s12888-017-1287-1
RESEARCH ARTICLE
Open Access
Understanding experiences of and
preferences for service user and carer
involvement in physical health care
discussions within mental health care
planning
Nicola Small1* , Helen Brooks2, Andrew Grundy3, Rebecca Pedley2, Chris Gibbons4,5, Karina Lovell2,6
and Penny Bee2,6
Abstract
Background: People with severe mental illness suffer more physical comorbidity than the general population,
which can require a tailored approach to physical health care discussions within mental health care planning.
Although evidence pertaining to service user and carer involvement in mental health care planning is
accumulating, current understanding of how physical health is prioritised within this framework is limited.
Understanding stakeholder experiences of physical health discussions within mental health care planning,
and the key domains that underpin this phenomena is essential to improve quality of care. Our study aimed
to explore service user, carer and professional experiences of and preferences for service user and carer
involvement in physical health discussions within mental health care planning, and develop a conceptual
framework of effective user-led involvement in this aspect of service provision.
Methods: Six focus groups and four telephone interviews were carried out with twelve service users, nine carers,
three service users with a dual service user and carer role, and ten mental health professionals recruited from one
mental health Trust in the United Kingdom. Data was analysed utilising a thematic approach, analysed separately for
each stakeholder group, and combined to aid comparisons.
Results: No service users or carers recalled being explicitly involved in physical health discussions within mental
health care planning. Six prerequisites for effective service user and carer involvement in physical care planning
were identified. Three themes confirmed general mental health care planning requirements: tailoring a collaborative
working relationship, maintaining a trusting relationship with a professional, and having access to and being able to
edit a living document. Three themes were novel to feeling involved in physical health care planning discussions:
valuing physical health equally with mental health; experiencing coordination of care between physical-mental
health professionals, and having a physical health discussion that is personalised.
(Continued on next page)
* Correspondence: nicola.small@manchester.ac.uk
1
Collaboration for Leadership in Applied Health Research and Care (CLAHRC)
for Greater Manchester, Centre for Primary Care, Division of Population
Health, Health Services Research and Primary Care, School of Health
Sciences, Faculty of Biology, Medicine and Health, Manchester Academic
Health Science Centre, University of Manchester, Williamson Building, Oxford
Road, Manchester M13 9PL, UK
Full list of author information is available at the end of the article
© The Author(s). 2017 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.
Small et al. BMC Psychiatry (2017) 17:138
Page 2 of 12
(Continued from previous page)
Conclusions: High quality physical health care discussions within the care planning process demands action at
multiple levels. A conceptual framework is presented which provides an evidence-based foundation for service level
improvement. Further work is necessary to develop a new patient reported outcome measure to enable meaningful
quantification of health care quality and patient experience.
Keywords: Service user involvement, Severe mental illness, Carers, Physical health, Mental health services, Care planning,
Qualitative research, Patients’ perspectives, Health outcomes
Background
People with severe mental illness suffer higher rates of
multiple, often more complex, physical comorbidity and
premature death than the general population [1]. As a
result, life expectancy for this vulnerable population is
reduced by 15–20 years [2]. It is well established that
side effects of some antipsychotic medications contribute substantially to this inequality alongside other factors
such as, higher rates of smoking, substance abuse, poor
nutrition and sedentary lifestyles [3].
Last year, the independent mental health Taskforce set
out a national strategic vision to deliver a Five Year Forward View to improving mental health outcomes across
the health and care system in England by 2020/21 [4]. The
strategy is the result of engagement with over twenty thousand people with lived experience of mental health conditions, families, carers and professionals, as well as a review
of clinical and economic evidence [4]. The Implementation
Plan aims to provide improved continuity and coordination
of care, and enhanced relational support between health
and social care or between primary and secondary care service providers by bringing together physical and mental
health care to benefit people with severe mental illness [4].
In response to the Taskforce, promises have been made to
deliver more integrated physical and mental health care, to
provide NHS care that is cost efficient, of a higher quality,
and more personalised to service users of mental health
services [5, 6]. Yet, despite efforts to improve mental health
care, a number of factors continue to make it difficult to
provide an integrated response to service users physical
and mental health needs, including a lack of institutional
time and space to be able to offer more personalised care;
cultural barriers at team levels to enable improved assessment, treatment and communication between professionals
within mental health services; and separate systems for
physical and mental health care delivery [5]. Mental health
professionals’ commonly report having insufficient skills,
competencies and resources to perform physical health
checks in addition to mental health checks [3]. As a result,
many physical health checks, such as vital cholesterol and
blood glucose checks to prevent the onset of long-term
physical health conditions, are not completed by mental
health professionals, with many service users being referred
on to physical health specialists in primary care [3, 7].
One approach mandated to enable decisions to become tailored to the individual service user and carer
to significantly improve health outcomes is individual
care planning [8, 9]. In the UK, the recovery-focused
Care Planning Approach (CPA) is mandated nationally
to assess service users mental and physical health needs
[10–12]. In line with the CPA, service users and carers
should have access to a care coordinator, a written care
plan and an annual review to check their progress. Service users should work collaboratively with their care
planning team to discuss and document their plan of
care [9, 13, 14]. Furthermore, service users are expected
to take joint responsibility for achieving their goals
reflecting the core principles of shared decision-making
[9, 14, 15]. Typically, a care plan, or a CPA review letter, should be the outcome of these discussions, and
should accurately document the interplay between an
individual’s mental and physical health symptoms, all
primary and secondary mental health and physical
health diagnoses and treatments, to ensure essential
and current information necessary for high quality care
of a service user of secondary mental health services is
recorded and communicated to primary care [16].
Qualitative research has highlighted how service user
and carer led involvement in mental health care planning persists as an under-performing area. Concepts of
user involvement have been shown to be operationalised
differently by service users and mental health professionals [17]. In practice, poor information exchange between mental health care professionals, insufficient
resources to empower service users and carers, and conflicts between mental health care professionals, frequently lead to decisions being taken without service
users and carers involvement [18].
Whilst there is some empirical evidence that coordination of care and maintaining a relationship is considered to be central to user-led involvement in mental
health care planning [19], it remains unclear how physical health is prioritised and operationalised within this
process. This knowledge gap is exacerbated by the lack
of clarity over where the responsibility for providing
physical health care to service users lies. Debate
continues as to whether this rests principally with
mental health professionals working within mental
Small et al. BMC Psychiatry (2017) 17:138
health services, primary care, or both [2, 5, 20–22].
Both service users and mental health professionals have
reported difficulties with accessing appropriate physical
health services, with the shared concern that physical
and mental health needs are still being addressed by
mental health services in a disconnected way [5].
Parity of esteem is a health policy concept that advocates equal value for mental and physical health services. This includes the priority and attention given to
both in research and practice. The aim of this paper is
to explore stakeholders’ experiences and preferences of
service user and carer led involvement in physical
health care discussions within mental health care planning. Recent studies in generic mental health care planning have revealed how the conceptual framework
underpinning user-involved care planning in mental
health services may differ from the patient centred care
framework adopted in physical health services [23].
This work emphasises the need to recognise the cultural and contemporary contexts in which service users
engage in care planning within secondary mental health
services. These contexts have traditionally led to more
paternalistic approaches to care planning, which are a
real barrier to adopting and practicing service user led
involvement [18, 23].
Understanding how service users and carers feel involved in planning their physical health care remains a
key step towards improving levels of preference-guided
involvement in mental health care planning [23]. The
current study addresses the aforementioned gap, through
understanding the experiences and preferences of service
users, carers and professionals, in relation to their preferred levels of involvement in physical health care discussions within mental health care planning.
The study used an explorative approach to inform the
development of a conceptual framework of service user
and carer involvement in physical health discussions
within care planning. This framework offers a useful
foundation to begin to understand how user-led involvement in physical health care discussions is achieved in
practice from multiple stakeholder perspectives [23],
with a view to expediting a move towards parity of esteem between mental and physical health services, and
improving the physical health of people with serious
mental illness.
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framework of effective user-led involvement. This approach was taken because we still have a limited understanding of how this concept is understood in this area
of service provision.
From herein, our study methods are reported in line
with the consolidated criteria for reporting qualitative
research (COREQ) guidelines [24].
Participants
Service user, carer and mental health professional participants were recruited from Manchester Mental Health
and Social Care Trust (MMHSCT) in the North West of
England, UK. At the time of our study, the MMHSCT
was the main provider of specialist mental health care,
social care, and health and wellbeing services to the
residents of Manchester, supporting over 14,000 service
users per annum, with a workforce of over 1500 and an
annual income of over £104 m [25].
Stakeholders’ were recruited from MMHSCT to compare experiences of service user and carer led involvement
in order to highlight any differences in perspectives and to
inform the conceptual understanding of effective service
user and carer led involvement. Thus, mental health
professionals were recruited, as well as service users
and carers, to discover how they experienced service
user and carer led involvement in routine practice, and
to establish preferences of service user and led involvement from all stakeholders involved in the process of
physical health care discussions within mental health
care planning.
Participant recruitment and data collection occurred
between June and September 2015. Participants were
recruited using a range of established recruitment
methods [26, 27], to attract service users, carers and
mental health professionals to take part in the study,
via: the Trust intranet and communications, posters
displayed on Trust and University premises and service
user and carer forums.
Inclusion criteria comprised service users who were
aged eighteen or over with current or recent involvement with community mental health services. Carers
were eligible for inclusion if they were caring or supporting a person with a serious mental illness who had
experience of secondary mental health services. Mental
health professionals had to be working in community
mental health services within the specified Trust.
Method
Study design
Data collection
The study utilised a qualitative approach, incorporating
focus groups and semi-structured interviews, to explore how the concept of user involvement in physical
health discussions within mental health care planning
is experienced from the service user, carer and mental
health professional perspective, to develop a conceptual
Data collection took place either on the University of
Manchester or Trust premises. Focus groups were used
to encourage open-ended group interaction and user-led
dialogue to elicit experiences and preferences of involvement in physical health care discussions within mental
health care planning.
Small et al. BMC Psychiatry (2017) 17:138
Potential participants contacted the study coordinator
(NS) to discuss study eligibility, and interview availability. Following this, participants were invited to attend a focus group, or to take part in a telephone
interview at a convenient date. This choice was mostly
determined by participant preference. Participants took
part in either a focus group or an interview, not both.
Eligible participants were sent (via email, or post) a
study information sheet. Before the start of each focus
group or telephone interview, participants were asked
if they had any further questions prior to giving written consent. Participants who chose to be interviewed
on the telephone were subsequently sent a study written consent form and a self-addressed envelope. Interviews and focus groups were arranged on receipt of
written consent. All interviews and focus groups were
digitally recorded with written consent.
The research team consisted of health services
researchers, a service user researcher, and a clinical
member of the Trust concerned. Thus, our team was
multidisciplinary with significant, methodological, service user lived experience, clinical, psychometric and
academic expertise. We followed a topic guide which
provided a flexible and established framework [23], to
understand experiences and preferences of service user
and carer preferred levels of involvement in physical
health discussions (see Additional file 1). Questions
specific to physical health were incorporated in a topic
guide; questions specific to service user and carer involvement were informed by a previous generic mental
health care planning topic guide which had been ‘user
tested’ by a service user and carer advisory group
(SUCAG [23]). We defined ‘physical health’ as an essential part of a service user’s overall health, and included
everything from their physical fitness and function, to
their overall physical wellbeing. Topics explored covered
current perspectives of physical health care discussions,
including: a) the importance of physical health in relation to mental health; b) the process; c) the outcome;
and, d) perceptions of service user and carer involvement (see Additional file 1 for detail).
The majority of the focus groups and telephone interviews were facilitated by the study co-ordinator (NS); the
minority were facilitated by a CLAHRC for Greater
Manchester PhD student (IA). All focus groups were cofacilitated by one of two members of the research team
(HB, RP). All facilitators and co-facilitators self-identified
as experienced health services researchers without professional or personal experience of secondary care mental
health services. Each focus group lasted on average 66
min (range: 50–89 min); telephone interviews were
shorter averaging at 34 min (range: 29–36 min). Service
users and carers were compensated for their time with a
payment of a high street gift voucher (£25) and travel
Page 4 of 12
expenses were reimbursed. Once each focus group or
telephone interview was completed, the topic guide was
adapted in line with the data collected and new
avenues of interest were explored in the next interview
or focus group.
A total of forty seven participants expressed an interest
in participating in the study, and thirty four participants
consented and took part in either a telephone interview or
a focus group. From our three groups of participants,
focus groups were undertaken with: twelve service users;
nine carers; two service users with a dual service user and
carer perspective; and seven mental health professionals
working in different roles within mental health services.
Of note, two mental health professionals were also service
users, but chose to participate in a professional focus
group. Telephone interviews were undertaken with three
mental health professionals, and one service user and
carer (bringing a dual perspective).
Table 1 presents the sample characteristics of the participants; the majority of our participants were female
service users.
Data analysis
Interview data was transcribed and anonymised upon receipt. The analysis process was led by the study coordinator (NS); all members of the research team contributed
to the analysis by reading a selection of transcripts,
coding text segments and offering suggestions to the
developing framework. All members of the research
team verified the final set of themes.
Data was subjected to a thematic analysis, whereby
emerging themes were generated, coded, re-coded and
categorised accordingly [28]. As coding progressed, an
excel spreadsheet listing the codes, and a document containing codes from each transcript with excerpts of data
relevant to each theme, were developed to manage the
developing thematic framework. All codes were checked
by revisiting the transcripts to ensure that the emerging
themes remained grounded in the service user and carer
perspective, and audio files were checked to assure the
quality of transcription.
Data from the service user and carer perspective were
coded separately from the professional data, and subsequently compared to allow for comparison of experiences.
Table 1 Sample characteristics relating to participants
Interview type
(Number)
Participant type
(Number)
Total number Gender
of participants
Male Female
Focus group (6) SU (12), SU/C (2), C (9), 30
MHP (5), MHP/SU (2)
8
22
Telephone (4)
2
2
SU/C (1), MHP (3)
4
Key: SU Service user, SU/C Service user and carer dual perspective, C Carer,
MHP Mental health professional, MHP/SU Mental health professional and
service dual perspective
Small et al. BMC Psychiatry (2017) 17:138
During the comparison of data, the framework was
reshaped to enable new themes to be introduced. The research team agreed as a whole when data saturation had
occurred (that is, the point at which no new themes
emerged from the data), and no further data collection
was necessary.
The analysis identified key prerequisites of effective
service user and carer involvement in physical health discussions within care planning, and a conceptual framework that represented the entire data set was developed.
Data are presented to compare and contrast service user,
carer, and mental health professional experiences of service user and carer led involvement in physical health
discussions within mental health care planning.
Results
Six prerequisites for effective service user and carer
involvement in physical health discussions within care
planning emerged from the data; three of which confirmed general care planning requirements (tailoring a
collaborative working relationship, maintaining a trusting relationship with the care planning professional and
having access to and being able to contribute to a living
document) and three which were novel themes, or those
that had specific relevance to physical health discussions
(valuing physical health equally with mental health, experiencing coordination of care between physical-mental
health professionals, having a physical health discussion
that is personalised). The conceptual framework detailing these is presented in Fig. 1.
Each prerequisite is presented in relation to the
current perspectives, processes and outcomes for effective
involvement, and the broader healthcare system factors
that impact on the implementation of effective user and
carer led involvement. Illustrative data are given and identified by a code number rather than a name or pseudonym, which is provided along with contextual information
on the interview type and participant group.
Page 5 of 12
Themes confirming general care planning requirements
Tailoring a collaborative working relationship
Tailoring a collaborative working relationship between
professionals and those people with lived experience was
described within accounts as a prerequisite for effective
service user led involvement in physical health care discussions within mental health care planning. Through a
collaborative working relationship, there was the potential
for service users and carers to feel empowered, and more
confident to become involved in tailoring their physical
health elements of the care plan. There was also reference
to how collaboration between mental and physical health
professionals, and the people who use the services, might
help to tailor the wider health and social care provided to
the needs of patients with serious mental illness, emphasising people’s preferences to move towards integrated
physical and mental health care.
“I think that one of the best things that users and
carers can bring is experts by experience, and they
can really help to shape the whole, kind of, how our
health and social care system works, to make it more
integrated” [5641, telephone, service user and carer].
Likewise, professionals described how the successful
facilitation of a collaborative working relationship was a
two-way process. This involved service users taking
ownership of care planning, and professionals establishing
some context about service users’ level of motivation and
commitment to the process, to tailor the collaborative
working partnership. Collaborative mental health care
planning had potential benefits for both parties if realised effectively.
“It’s a two-way process… it’s something that they’re
involved with and taking part in and contributing to,
rather than something that’s being done to them…
they [professionals] might learn the reasons why
Fig. 1 Conceptual framework: six prerequisites for effective service user and carer led involvement in physical health care planning and broader
factors that impact on the implementation within mental health services
Small et al. BMC Psychiatry (2017) 17:138
people do things in certain ways and be able to
manipulate something around that. And having
that full picture of that patient” [6225, telephone,
mental health professional].
Across stakeholder accounts, the potential for collaborative working was often missed due to broader factors
within the healthcare system, such as; time, resources,
workload constraints, service users characteristics, and
carer-patient confidentiality.
“I think a lot of patients are quite passive in themselves
about some important health priorities, and if they are
passive about those and there are some other difficulties
such as time constraints, resources in the health and
social care system, that passivity combined with lack
of resources does conspire to neglect kind of assertive
physical health care plans” [6372, telephone, mental
health professional].
Carers highlighted the value of their role within collaborative care planning discussions because of the in-depth
knowledge they had about the service user they care for.
This value was considered particularly relevant in situations where service users were less involved in care planning. Carers’ perspectives resonated with both the service
users’ and professionals’ preferences for tailoring collaborative working relationships to the individuals involved,
thereby optimising the likely relevance and implementation of care recommendations.
“…there’s a huge assumption that the cared for will be
able to take up that offer of physical health, and I
think that’s a huge assumption for that person who’s
not well to be able to suddenly skip to the gym or do
whatever. And I think without the role of the carer it’s
just not going to happen… I’m sure there’s many
people out there that might be given social prescribing,
and it does nothing for them because they’re not
able to actually make that step to actually do it. I’d
make sure the cared for actually goes to the gym or
whatever, which is actually quite a challenging task
in itself sometimes” [5277, FG3, carer].
Page 6 of 12
an established two-way trusting relationship was also
reflected within professional accounts.
“I think, for a start, it’s the sense of knowing that
nothing is physically wrong with me, or when it is,
knowing that I’m getting the right treatment or I’m
not being misunderstood by a GP or other form of
professional, that it’s just the mental health that’s
making you think like that” [5641, telephone, service
user and carer].
“It’s having somebody visible that can go and access
and to take that information on board and having
somebody there for when they need that information.
But it’s building up that baseline first that people
know that there’s people there that they can access.
It’s knowing what resources they can tap into” [6225,
telephone interview, mental health professional].
Without this trusting relationship, service users and
carers reported finding it difficult to raise or discuss sensitive issues within consultations. For example, sexual dysfunction and weight gain associated with antipsychotic
medication were common physical health concerns that
service users wanted to raise with professionals. However,
they did not feel they could do this with a professional
they did not trust.
“I think trust is a big issue... You know, you get a
number of therapists that make people feel like freaks,
you know, and there’s not going to be any positive
remark... especially if you talk about things like
smoking that people enjoy, or anything that’s hard to
change, you’re not going to do that with someone you
don’t trust” [5276, FG2, service user and carer].
Despite these potential benefits, professionals’ described
how time and skill-mix constraints within the mental
health workforce were barriers to developing these relationships. There was also an acknowledgment that a
trusting relationship would need to be built over time
requiring a level of continuity of care that was not possible within current mental health services.
Maintaining a trusting relationship with the care planning
professional
Having access to and being able to contribute to a living
document
Service users felt that maintaining a reciprocal trusting
relationship with their mental health professional was a
prerequisite to feeling able to attend, and contribute to
care planning discussions about physical health. Service
users and carers described the need to feel that their
mental health professional acknowledged what they were
saying and trusted them, so that they would feel able
to openly discuss their physical health needs. Having
Having access to a living document with tailored content
and regular follow-up was the preferred outcome to
having a physical health discussion that was personalised. Ideally, a care plan would be a holistic document
including tailored content related to both mental and
physical health which service users could access and
edit, helping to maintain its currency, moving it from a
reactive document to a proactive document.
Small et al. BMC Psychiatry (2017) 17:138
“I don’t even want to call it physical or mental, I’d
rather just call it a wellbeing health plan or a wellbeing
plan, because both parties shouldn’t ignore the other
part of your life, you know, they are both equally
important. If I go to see a physical health practitioner, I
would like that physical health practitioner to ask me
questions around how am I feeling, what is my mental
state like, what impact is this physical health condition
having on me? And I would like the same for a nursing
staff to do in a mental health setting, to ask me about
my physical health. So I think that for me there should
be something that people should see you as a whole
person” [5641, telephone, service user and carer].
There was a perception amongst service users and
carers that current care plans were written from the
perspective of professionals to serve professional and
organisational requirements.
“I don’t have one [care plan]… if one was written it
would be written for them [mental health professionals’],
by them without anything to do with me. So I mean I
wouldn’t see it anyway. So I mean the things I want, or
if I had an imaginary care plan, is a discussion about
what affects me, you know, like a sort of level of… what’s
having the biggest impact on me and maybe where I can
get support with these things, that would be the kind of
thing I’d want” [5276, FG2, carer].
Many service user and carers described not having received a care plan, nor did they recall direct involvement
in physical health discussions within the care planning
process. If a care plan existed, service users and carers
were not necessarily involved in developing the content,
nor were they able to access or edit it. Of note, all participants’ emphasised that even for those physical health discussions that did occur, these were not always reflected on
and updated in the care plan. As a result, the document
remained static and unhelpful to any subsequent physical
health discussions, or treatment.
“I haven’t seen a care plan for eighteen month, maybe
two years. It must be approaching two years that my
social worker said ‘oh, I’ve done your care plan, will
you have a look at it for me’. These things need
updating every three to six month at the very least”
[5275, FG1, service user and carer].
Novel themes with specific relevance to physical
health discussions
Valuing physical health equally with mental health
A core prerequisite to establishing effective service user
and carer led involvement in physical health discussions,
which appeared across participant group accounts, was
Page 7 of 12
the importance of recognising the parity of physical and
mental health in the context of a holistic approach to
physical and mental health care planning within mental
health services. A holistic approach was perceived by all
participants’ to be consideration of the whole person’s
physical, emotional, social, and spiritual health.
“So it is important that it is connected, the mind and
body, because what you think and that, it affects what
you eat and everything. But it’s important to treat
them both as equal and the same” [5277, FG3, carer].
However, participants generally reported a lack of holistic
approaches to mental health care planning for a number of
reasons. Professionals described how mental health services are siloed from physical health services with current
health service structure and provision. There was also a
tendency for mental health professionals to treat physical
health as a second priority to mental health. Of particular
note, prioritisation of mental health over physical health
was highlighted across participants’ accounts describing
particular experiences whereby mental health professionals’
minimised physical symptoms, which evoked feelings that
physical health concerns were not valued equally with
mental health.
“I think fundamentally commissioning is where we’re
going wrong with physical health, getting it together
with mental health and we look at parity of esteem
and I think mental health services are working
towards parity of esteem, we are starting to look at
physical health as something we do, we’ve got to get it
right, it’s really important, it doesn’t work the other
way, the acute trust do not, when you’re having your
appendix out, consider your schizophrenia or your
medicines” [5427, FG5, mental health professional].
“I’ve had a personal experience where you explain a
condition to a doctor and he just doesn’t actually
realise that what you’re saying is physically happening,
he just thinks it’s just part of your mental illness
and they kind of fob it off” [5641, telephone, service
user and carer].
Service users and carers frequently complained about
professionals taking limited responsibility for their physical health concerns, and subsequently referring them to
physical health specialists outside of mental health services. Many mental health professionals acknowledged
this referring of service users onto physical health services,
most commonly the GP. They described not having the
specialist physical health knowledge, or access to onsite
physical health services to treat physical health effectively
within mental health services.
Small et al. BMC Psychiatry (2017) 17:138
“I think staff will often say, well, you need to go to the
GP. And so a lot of them redirect them to the GP
really, if there’s a physical health problem. Because
they don’t have the knowledge, primary care’s the best
one, the GP has the knowledge” [6390, Telephone,
mental health professional].
Despite these descriptions of separation of mental and
physical health within health service structure and
provision, all participants’ described an overwhelming
difficulty in separating the experience of physical and
mental health symptoms. This was particularly common
when service users and carers experienced side effects,
such as weight gain, from antipsychotic treatment.
“I think in relation to having a mental health
diagnosis, for me physical needs to be part of the
equation, because most people get put on medication
where the side effects aren’t explained fully, so you’re
experiencing different physical things that you’ve
probably never encountered before. So the physical
aspect needs to be included to include them side
effects” [5275, FG1, service user and carer].
Experiencing coordination of care between physical-mental
health professionals
A prerequisite of effective involvement was experiencing coordination of care between mental and physical
health professionals. Integrated care was described by
service users, carers and mental health professionals
as an approach to health and social care that needed
to happen for effective user and carer involvement in
physical health care discussions within the care planning process to be implemented in mental health
services.
“What I would like more of, is that there’s more
coordination in my mum’s care plan around physical
practitioners, healthcare practitioners working along with
mental health practitioners” [5641, telephone, carer].
In order to realise the level of coordination of care
required, professionals’ described needing more physical health resources within mental health services in
order to deliver coordination of care, such as locating
hospitals next to community mental health hospitals,
and building physical health clinics within mental
health services.
“I think we need the resources ourselves really. The
Community Mental Health Trust needs to provide
that. When people come to an outpatient appointment…
the consultant sends a letter to the GP and says, can
you do the bloods and the ECG. Now that doesn’t
Page 8 of 12
always happen. And we don’t know if it happens,
nobody… we just have to ask the patient. So if you
had somewhere there like they do at [name]… I know
they’ve got a physical health clinic there and people
go to an outpatient appointment, maybe they could
just pop in and have their bloods done, and they can
have an ECG or they can have an appointment to
come back and have a physical health check. I think
we need something like that” [6390, telephone,
mental health professional].
Having a physical health care discussion within care
planning that is personalised
Having a physical health care discussion within the care
planning process that is personalised to the service user
was a prerequisite to feeling involved in the process and
outcome of care planning as described by service users
and carers. Service users and carers, however, reported
that no specific physical health care meetings took place
within mental health services. Participants felt that
when physical health did feature in general mental
health care planning discussions, this represented a
‘tick box’ exercise focussed on specific health conditions or organisational requirements, rather than a
meaningful discussion personalised to the individual’s
holistic physical health needs.
“They are discussed. There’s no doubt about that, I
wouldn’t say that they don’t get discussed because,
you know, part of my care plan when I used to get a
lot of services was input around my mental wellbeing.
They used to cover, you know, all the physical aspects
of it, but it was a tick box exercise. It was very much
a tick box exercise: ‘okay, let’s da-da-da-da’, it would
only… But, actually, when you have something,
no thorough detail no thorough interest is taken
by mental health practitioners” [5641, telephone,
service user and carer].
Professionals felt that planning care for physical
health needs within the care planning process was a
longitudinal process and that in practice mental health
services had yet to achieve equilibrium between mental
and physical care planning needs due to individual and
broader healthcare factors. Professionals described how
physical health concerns were often discussed in relation to the structured questions in the Rethink Physical
Health Check tool in line with the CPA [29]. This ensured that physical health discussion remained focused.
However, sole reliance on this tool resulted in no room
for expansion of the physical health discussion to meet
the service users’ individual care planning needs and
might lead to service users feeling that physical health
care discussions were not meaningful.
Small et al. BMC Psychiatry (2017) 17:138
“I think the care planning, the patients themselves
need to understand why it’s done, it’s not just a
tick-box exercise [using the rethink tool], that it has
actually got outcomes, and it’s for their health. But
it’s them perceiving that… care planning takes a bit
longer. When you involve the patients and you take
them on board, there are things that will be raised
up and how you actually signpost that person to the
more appropriate place, will they take up more time
in the extra help that they potentially might need to
support them through this” [6225, telephone, mental
health professional].
Discussion
People with severe mental illness suffer more complex
physical comorbidity than the general population, requiring a more tailored approach to care planning
from mental health services. The present qualitative
study sought to expand on policy mandates for integrated physical and mental health care in the NHS
[30], by defining best practice for physical health planning for service users across individual, practice and
organisational levels. This study is to our knowledge,
the first empirical research study to present a conceptual framework of high quality physical health discussions for mental health service users, providing a
much-needed platform for service improvement and
future research and development activities. Our data
suggests that a more tailored approach to physical
health care discussions within mental health care planning, which looks at the whole person in context with
their unique needs and personal characteristics, is necessary for effective service user and carer led involvement to be achieved in practice.
The novel contribution to our study lies in the development of a unique conceptual framework encompassing the prerequisites necessary to achieve effective
service user and carer involvement in physical health
care discussions; this work provides a foundation to
understand how the concept might be translated into
practice. Our evidence-based framework highlights the
relationships between the different prerequisites, and
how real service user and carer involvement might be
achievable through the measurement of those prerequisites (see Fig. 1). We have shown that service user and
carer involvement in physical health discussions is influenced by different factors, and is expedited by and
judged according to six different domains of activity:
valuing parity of esteem; tailoring a collaborative working relationship; maintaining a trusting relationship;
experiencing coordination of care between physical and
mental health professionals; having a physical health
discussion that is personalised; and being able to
contribute to the outcome of those physical health
Page 9 of 12
discussions in the short and longer term through accessing, and editing a living document that encompasses a
current plan of physical and mental health wellbeing. In
further work, we are now in a position to operationalise
our conceptual framework, by developing a new patient
reported outcome measure (commonly known as a
PROM) of service user and carer led involvement in
physical health care domains of mental health care
plans. Psychometric PROMs are reliable and valid measures used in translational research in the NHS to
quantify domains of interest, to enable meaningful
measurement of health care quality and patient experience outcomes from the service user perspective [23].
A strength of our approach is that we developed our
conceptual framework through consultation with service
users and carers to identify their perspectives, and
combined this data with insight from the mental health
professional perspective with experience of operationalising service user and carer led involvement in physical
health care discussions within mental health care planning. Our data reveals a need to improve the relational
aspects underpinning physical health care discussions,
in order for meaningful service user and carer involvement to occur. Importantly, we have identified a conceptual model of ‘best practice’ care planning that
challenges current practice [11], having found no evidence within our study that service users and carers
had been meaningfully involved in physical health care
discussions; some participants reported receiving no
care plan at all.
We have shown that efforts to improve the physical
health care of people with serious mental illness should
be developed in consultation with the stakeholders to
empower service users, carers and mental health professionals, to help remove barriers to delivering and
accessing more integrated care within mental health
services. Of note, we found no evidence of examples
where stakeholders have had input into the development of integrated care systems. Therefore, our study
has highlighted the need to develop more bespoke and
meaningful interventions for people with serious mental illness, to be able to treat physical health care with
equal importance as mental health care, coordinate care
between physical-mental health professionals, and have
physical health discussions that are personalised to the
user. Further, our three novel themes illustrate how service users require their physical health, mental health
and social care to be coordinated around them, and for
this to happen, this requires a partnership with service
users and carers over the long term, rather than providing
unconnected care. Thus, our framework emphasises the
importance of providing an integrated approach to the
identification, assessment and support of service users
physical health needs across health and social care [5, 30].
Small et al. BMC Psychiatry (2017) 17:138
Our data has some conceptual similarities to
evidence-based frameworks developed for user-carer
led involvement in generic mental health care planning
[17, 18, 26, 27]. Within mental health care planning,
service users, welcome the partnership element of collaborative working, and valued relational aspects of care
planning and request a personalised approach to care
[17, 18, 27]. Our data suggests that service user dissatisfaction with physical health planning may be lessened
by personalising physical health discussions and resources [26, 27]. Likewise, feelings of isolation and
vulnerability would lessen as service users and carers
become more involved in the care planning process at a
preferred level of involvement [26, 27, 31].
Operationalising such a process within mental health
services demands action and cultural change at team
and organisational levels. Staff time was a clear barrier
that impacted on the quality, depth and meaningfulness
of those personalised service user and carer led care
planning discussions [17, 27]. Moreover, the potential
for service user and carer led involvement was often
missed due to other broader factors within the healthcare system, such as; resources, workload constraints,
and organisational barriers within the mental health setting [17, 18, 27]. A crucial organisational barrier in our
findings was the dilemma and lack of clarity around
service responsibility - mental health or physical health
services - for provision of physical health care. Interestingly, this reflects previous International qualitative research whereby mental health and primary care health
care systems have been found to operate in silo, resulting in no clear preference as to which physical-mental
professional should provide the physical care [3]. However, our unique framework with specific relevance to
physical-mental health domains may help to resolve
this recurring dilemma for mental health professionals
through ensuring transparency of service responsibility
via coordinating care with physical professionals, and
documenting those meaningful physical health care
discussions and outcomes on a living care plan that either professionals may consult to clarify provision of
physical health care, and to give context on their physical health needs.
We have identified a need for specific workforce physical health training to ensure that physical health care
delivery was fully and effectively integrated within mental health services. Professionals in our sample described
a lack of confidence and skill in dealing with service
users physical health, leading to a need to ‘refer on’ to
other more skilled physical health professionals outside
of mental health services [3, 7, 18]. As a result, many
service users and carers described being ‘fobbed off’ by
their mental health professional, or being ‘passed about’
to a physical health specialist without knowledge of their
Page 10 of 12
mental health difficulties, or recovery journey, which in
turn impacted on service users and carers motivation
levels to be involved in any subsequent physical health
discussions. The aforementioned barriers to service user
and carer led involvement in physical health discussions
in mental health care planning resonate with the recent
mandate to bring together physical and mental health
care as a third dimension to health and social care in the
NHS [5]. Initiatives to overcome these barriers and implement integrated physical and mental health care recommend professional bodies to redesign curriculums so
that all health professionals have a common foundation
in mental health, as well as physical health [5]. This may
overcome the dilemma of prioritisation of mental health
over physical health which service users/ carers and
mental health professionals described, as well as mental
health services not taking shared responsibility for physical health concerns. Other initiatives mandated involve
providing ongoing training for mental health professionals to closely monitor physical symptoms, as well as
training to improve communication to GPs, to ensure
integrated models of care are in place to sustain good
practice [16].
Our data substantially strengthens the mental health
Taskforce 5 year objective to increase investment in
mental health funding, to achieve a system-wide transformation for mental health services to be able to
achieve parity of esteem [5, 30]. Ultimately, our data
highlights how mental health services still have a long
way to go to achieve the cultural change to deliver the
prerequisites necessary to bring about true service user
and care led involvement in care planning discussions
[5]. However, our conceptual framework centred on
valuing parity of physical and mental health, coordination, personalising physical health discussions and
documents to reflect the service users and carers holistic and individual needs, may assist the delivery and
embed service user and carer individual care planning
in practice, against achieving the Taskforce 5 year vision of offering more preventive, and holistic mental
health care [4].
Of note, the integration of Greater Manchester West
Mental Health NHS Foundation Trust and MMHSCT
to form Greater Manchester Mental Health NHS Foundation Trust (GMMH) took place two years on following
the completion of our study on 1st January 2017, to improve prevention, access, integrated approaches towards
physical and mental health and the sustainability of
Manchester’s mental health services [32]. This represents the first phase of the wider transformation of mental health services across Greater Manchester, which will
see the integration of social care, primary care and mental health provision together at the community level, and
mental health services collaborating around specialist
Small et al. BMC Psychiatry (2017) 17:138
provision of care [32, 33]. The new pooling of budgets
to enable joint decision making as an integrated whole is
thought to allow new models of care to be developed
and supported to improve the health and wellbeing of
service users and carers [33]. Our platform for best practice for effective service user and carer involvement in
physical health care planning complements the new
strategic vision of the GMMH Trust for the future delivery of mental health services across Greater Manchester, with particular investment in stakeholder
improvement schemes across the Trust, designed to improve physical and mental health service user experience, and integrated health and social care.
Limitations of the current study
There are limitations to the findings that we have presented. Given the nature of our approach to recruitment,
a few of the participants had participated in a previous
user involvement focus group as part of the wider
involvement in care planning programme; thus, previous
experience may have influenced accounts given [23].
The range of characteristics of participants in the study
was limited by the opt-in methods; we sampled more female participants, and more service users than carers.
We collected limited demographic characteristics (gender, participant type and role), but we intend to collect
further demographic data from a larger sample of service
users and carers when we develop and preliminary test
our new PROM in future work. The potential for purposive sampling in responses to developing themes was
minimal given the nature of the opt-in method to recruitment. The ethical requirement to obtain written
consent from all participants impacted on the number of
mental health professionals recruited to be interviewed
over the telephone; many participants failed to return
written postal consent. The diagnosis of serious mental
illness was not verified by a mental health service provider that they were using, or the GP, and represent people’s perceptions. It is possible that these sampling issues
may have led to a restriction in the range of interpretation of findings if certain types of participants do not
respond. For instance, those patients who may not have
a good relationship with their care planning team may
have decided to not take part. The findings may not be
generalizable to all types of serious mental illness and
physical health conditions; and type of condition is a
variable to explore in our further research. We did not
collect baseline data on professional role. Professionals
were self-identified as being involved in physical health
discussions with mental health service users and carers.
However, professional participants were primarily recruited to explore how involvement was operationalised
in practice, to complement and contrast, service user
and carer experiences of involvement.
Page 11 of 12
Conclusions
We identified six prerequisites for effective user-led involvement in physical health care discussions within mental
health care planning and organised them into a conceptual
framework of confirmatory and novel themes. Our data
revealed that user-led involvement in physical health care
discussions is an interpersonal process that if facilitated
correctly, should empower service users and professionals
to work together effectively. Improvements in physical
health discussions within the care planning process, and
the delivery of integrated care, demand action at individual,
team and organisational levels. A conceptual framework is
presented which provides an evidence-based foundation
for service level improvement. In our future work, service
user and carer centred items will be developed for a new
PROM to quantify and move towards implementing service user and carer led involvement in practice.
Additional file
Additional file 1: Participant data collection topic guide. (DOCX 186 kb)
Abbreviations
CLAHRC: Collaboration for Leadership in Applied Health Research and Care
for Greater Manchester; COREQ: Consolidated criteria for reporting qualitative
research guidelines; CPA: Care Planning Approach; ECG: Electrocardiogram;
GMMH: Greater Manchester Mental Health NHS Foundation Trust; GP: General
practitioner; MMHSCT: Manchester Mental Health and Social Care Trust;
PROM: Patient reported outcome measure; SUCAG: Service user and carer
advisory group
Acknowledgements
The authors of this manuscript would like to thank the service users, carers and
mental health professionals who willingly gave their time to participate in the
study. We would like to acknowledge the support provided by Manchester
Mental Health and Social Care Trust. We also acknowledge the support given
by Isabel Adeyemi, a PhD student on the CLAHRC Greater Manchester, to the
acquisition and analysis of data for this study.
Funding
Dr. Penny Bee is supported by the National Institute for Health Research (NIHR)
Collaboration for Leadership in Applied Health Research and Care for Greater
Manchester. The views expressed are those of the author(s) and not necessarily
those of the NHS, the NIHR or the Department of Health.
Availability of data and materials
The data generated during or analysed during the current study are not
publicly available due to ethical restrictions. Any enquiries regarding the
study can be directed to Dr. Nicola Small, as corresponding author, and
Dr. Penny Bee, as principal investigator on the study.
Authors’ contributions
NS was the study coordinator. She led on the recruitment, data collection
and data analysis. NS led on the drafting of the conceptual framework and
the manuscript critically for intellectual content for publication. HB was
involved in the conception and design of the study. She also assisted the
study co-ordinator with the recruitment, data collection and analysis. HB
co-facilitated revising the conceptual framework and manuscript critically for
intellectual content for publication. AG was involved in the conception and
design of the study, as well as the recruitment of participants and analysis of
data. RP was involved in the conception and design of the study. She assisted
the study co-ordinator with the recruitment, data collection and analysis.
CG was involved in the recruitment of participants and provided guidance
to NS on the research process and the intellectual interpretation of the
Small et al. BMC Psychiatry (2017) 17:138
conceptual framework. KL had substantial input into the design and conception
of the study, assisted with recruitment and commented on the final manuscript
for publication. PB had substantial input into the design and conception of the
study, as well as data collection and analysis. She was involved in revising the
conceptual framework and manuscript critically for intellectual content for
publication. All authors read and approved the final manuscript.
Competing interests
The authors declare that they have no competing interests.
Consent for publication
Not applicable.
Ethics approval and consent to participate
Ethical approval was granted for the study by the next available committee
to review our application, South Central – Oxford B NHS Research Committee
(REC Ref: [15]/SC/0149). All participants provided written consent.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
Collaboration for Leadership in Applied Health Research and Care (CLAHRC)
for Greater Manchester, Centre for Primary Care, Division of Population
Health, Health Services Research and Primary Care, School of Health
Sciences, Faculty of Biology, Medicine and Health, Manchester Academic
Health Science Centre, University of Manchester, Williamson Building, Oxford
Road, Manchester M13 9PL, UK. 2Division of Nursing, Midwifery and Social
Work, Faculty of Biology, Medicine and Health, University of Manchester,
Jean McFarlane Building, Oxford Road, Manchester M13 9PL, UK. 3School of
Health Sciences, Faculty of Medicine and Health Sciences, University of
Nottingham, Research Office Medical School, Queen’s Medical Centre,
Nottingham NG7 2UH, UK. 4Cambridge Centre for Health Services Research,
Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way,
Cambridge CB2 0SR, UK. 5The Psychometrics Centre, Cambridge Judge
Business School Executive Education, Cambridge CB2 1AG, UK. 6Collaboration
for Leadership in Applied Health Research and Care (CLAHRC) for Greater
Manchester, Division of Nursing, Midwifery and Social Work, School of Health
Sciences, Faculty of Biology, Medicine and Health, University of Manchester,
Jean McFarlane Building, Oxford Road, Manchester M13 9PL, UK.
1
Received: 23 September 2016 Accepted: 27 March 2017
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