network
nsun for mental health
A review of values –
based commissioning
in mental health
A report by Emma Perry,
Jo Barber and Elizabeth
England – 2013
together we
are stronger
National Survivor User Network
NSUN
27-29 Vauxhall Grove
London. SW8 1SY.
United Kingdom
An evaluation of the West
Midlands mental health
commissioning modelling
group and consultations
with service users and
carers
NHS Midlands and East
St. Chads Court
213 Hagley Road
Birmingham
B16 9RG
Telephone
0121 695 2222
telephone
020 7820 8982
email
[email protected]
website
www.nsun.org.uk
Registered Charity No.
113598
© National Survivor User Network 2013
2
3
A review of values –
based commissioning
in mental health
A report by Emma Perry,
Jo Barber and Elizabeth
England – 2013
n
An evaluation of the West
Midlands mental health
commissioning modelling
group and consultations
with service users and
carers
network
for mental health
In partnership with NHS Midlands and East
4
1
Contents
A Note on the terminology used
Acknowledgements
Project team
Executive Summary
1
Service user and carer leadership in values-
based commissioning: a review of the literature
1.1 Contextual background
1.2 Service user involvement in the commissioning of mental health care
1.3 Evidence-based practice
1.4 Values-based practice
1.5 Values-based commissioning
2
The changing landscape of mental health commissioning
3
Existing service user involvement in mental health commissioning
3.1 Action for Service Users Group (AfSUG) - Birmingham 3.2 Mental Health Action Group – Birmingham 3.3 User Voice - Birmingham and Solihull MH Foundation Trust 3.4 Service User Involvement in Coventry
3.5 Mental Health Partnership Board – Dudley PCT
3.6 The Worcestershire Mental Health Consultative Group
4
The West Midlands Mental Health Commissioning Modelling Group
5
Aims and objectives
6
Consultation with service users and carers
6.1 Group interviews
6.2 One-to-one interviews
6.3 Online survey
6.4 Recruitment and ethical issues
6.5 Transcription and data analysis
6.6Limitations
7
Findings from the Commissioning Modelling Group, group interviews with service users and online survey
7.1 Good practice in values-based commissioning
7.2 The process and workability of VbC
2
4
5
5
6
8
8
8
9
9
11
12
13
13
13
13
13
14
14
14
8
Findings from the interviews with service users and carers
8.1 Purpose of involvement
8.1.1 Service users and carers: two distinct categories
8.2Presence
8.2.1 Diversity, engagement and involvement
8.3Process
8.3.1 Practical and emotional support
8.3.2Payment
8.3.3 Skills and training
8.3.4 Potential barriers and risks to involvement
22
22
23
23
24
25
25
26
26
27
8.4Impact
27
8.4.1 Co-production and joint accountability
27
8.4.2 Evaluating the impact of service user and carer involvement
28
9Recommendations
28
10
Concluding comments
29
Apendices
Appendix A – Interview guide
31
Appendix B – Information sheet for participants
32
Appendix C – Compendium
34
REFERENCES47
15
15
15
16
16
16
17
18
19
19
21
3
A note on the terminology used
The NHS has traditionally referred
to people who use their services as
‘patients’. However, in recent years the
term has received criticism in the field
of mental health. Some individuals,
particularly those with long-term
conditions, have argued that the term
‘patient’ is patronising and incorrectly
positions them as passive recipients of
care (Coldham, 2012).
Many people who have experienced
mental ill health define themselves as
‘survivors’, not only of the effects of mental
health conditions, but of the psychiatric
system (Stickley, 2006). However, the
most recent term used by policy makers
and practitioners to describe those on the
receiving end of mental health services is
‘service user’.
4
Despite the term’s current popularity, many
researchers have stressed the importance
of questioning this term. For example,
Stickley (2006) has drawn attention to the
‘depersonalising’ nature of the term and
points out that ‘service users’ are not a
homogenous group of people. Similarly,
McLaughlin (2009) has argued that the
term ‘service user’ reduces an individual
to just one aspect of their identity: their
use of mental health services (McLaughlin,
2009). It has also been suggested that the
term sets up a false distinction between
the categories of ‘service provider/health
care professional’ and ‘service user’
(Cowden and Singh, 2007) and fails to
acknowledge the fluidity between these
categories.
Despite these valid reservations, the term
is in common usage and is therefore
the one used throughout the rest of
this document. However, it is used with
awareness of its shortcomings and in the
knowledge that it encompasses a wide
range of diverse individuals who have
different social identities, values, attitudes
and beliefs.
Project team
Acknowledgements
Emma Perry Emma, Jo and Liz would like to thank the
following people, without whom this project
would not have been possible:
Role Jo Barber
Role Liz England Role Neil Deuchar
Consultant Fran Singer
Consultant Sarah
Yiannoullou
Consultant Project Manager –
Researcher (NSUN)
Project management,
individual interviews,
analysis, report writing.
Service User
Project planning, group
interviews, analysis,
report editing.
Senior Lecturer
Birmingham University
Project planning, group
interviews, analysis,
report editing.
Medical Director, Mental
Health, SHA
Advice and guidance
throughout
The service users and carers who gave up their
time to be involved in the group and individual
interviews.
Neil Deuchar, for his belief in the concept of
values-based commissioning and ongoing
project support.
Fran Singer and Sarah Yiannoullou at NSUN.
Paul Roberts and Stephen Jeffreys from
Suresearch for their help with interview
arrangements and use of the Suresearch office.
Involvement Project Manager
NSUN
Advice and guidance
throughout
Managing Director,
NSUN
Advice and guidance
throughout.
5
Executive summary
What is Values-based
Commissioning?
Health and social care commissioning
is currently going through a period of
considerable change. Following the Health and
Social Care Act (2012) new GP-led Clinical
Commissioning Groups (CCGs) have taken
responsibility for the ‘commissioning’ (ie.
funding, planning, delivery and evaluation) of
mental health services in each local area.
Commissioning decisions have traditionally
been guided by ‘evidence-based practice’
(EbP), which centres on the idea that policy
making and practice will be more effective
if based on particular forms of scientific and
objective research evidence. But critics of
this model have suggested that evidencebased practice has the potential to overlook
the thoughts, feelings and opinions of service
users and carers (Hewitt, 2009; Rose and
Gidman, 2010).
In order to address some of these issues, the
concept of ‘values-based practice’ (VbP) has
been developed as the values counterpart of
the evidence-based approach (Fulford, 2004).
It does not seek to replace EbP, but instead
aims to make clinical decisions on the basis of
‘values’ as well as ‘facts’. It aims to empower
service users and carers to have more direct
control over decisions relating to treatment,
access to services and choice about care.
It also aims to identify and make explicit the
diverse values of all those involved in the
process of clinical decision-making.
VbP has recently been applied to
commissioning of services. The term ‘valuesbased commissioning’ (VbC) has emerged to
refer to the way in which service users and
carers can work jointly with commissioners
in order to influence decisions relating to the
commissioning of mental health services
(England, 2011; Heginbotham, 2012).
Values-based commissioning represents a
new and innovative way of commissioning
mental health services. It moves away from
the dominance of clinician experience and
scientific evidence that has been prioritised
over service user values and experience in
traditional commissioning processes.
6
The Review
Findings
Despite widespread recognition of the
importance of service user participation, recent
studies have argued that current service user
involvement in mental health commissioning is
limited, with many commissioners lacking the
skills and confidence to engage service users
and carers effectively (McIntosh et al, 2010;
Mauger and Deuchars, 2010). Consequently,
NSUN (National Survivor User Network) and
NHS West Midlands were keen to explore the
mechanics of VbC, particularly with regard to
how mental health service users and carers could
actively participate in, and ultimately take joint
ownership of, mental health commissioning.
The findings of the review highlight the need
for the concept of ‘commissioning’ to be
demystified and explained with greater clarity,
particularly within the current landscape of
clinician-led commissioning. More extensive
mapping needs to take place in the West
Midlands area with regard to existing service
user involvement in commissioning and how
this will be affected by the new structures
which came into being in April 2013. More
specifically, awareness needs to be raised
with regard to ‘values-based commissioning’,
and its emphasis on service user leadership,
power sharing and co-production of services.
Although a considerable amount of service
user consultation currently takes place, there
continues to be comparatively little service
user leadership, or joint decision-making
in relation to service design and delivery.
However, power sharing and co-production
in this setting will require a significant shift in
culture. ‘Professional commissioners’ need to
be sensitive to issues of language, power and
cultural diversity and should begin to critically
reflect on their ability to share the label of
‘expert’ in this setting.
NHS West Midlands convened a Mental Health
Commissioning Modelling Group (MH-CMG)
in December 2010. The group included
representatives from social care, PCTs, public
health and GP practices. It aimed to set out
principles of best practice with regard to
the concept and delivery of values-based
commissioning across the major areas of
provision and prevention within mental health
and learning disabilities. NHS West Midlands
and NSUN also wanted to interview service
users and carers to find out how valuesbased commissioning could work effectively
in practice. Thus three group interviews were
conducted with service users and carers
at Birmingham University and one-to oneinterviews were held with 11 service users,
one of whom was also a carer, with the aim
of discussing good practice in values-based
commissioning. An online survey was also set
up so that commissioners and Mental Health
Leads could feed into this process.
This report is a review of values-based
commissioning in the West Midlands. It is,
in part, an evaluation of the West Midlands
Mental Health Commissioning Modelling
Group, but it also includes consultation data
from service users relating to values-based
commissioning. The group interview, MHCMG and survey data was analysed using
framework analysis, and the one-to-one
interviews were analysed using the National
Involvement Partnership PPPI (Purpose,
Presence, Process, Impact) framework for
service user involvement.
The findings also highlight the need for a
greater number and diversity of service
users who are involved in mental health
commissioning at all levels of decision-making.
There is an urgent need to develop creative
and inclusive ways of engaging with a wider
range of people who are marginalised and
whose voices are seldom heard. Although this
is a relatively new area of work, and further
empirical work needs to take place in order
to address some of the issues raised in this
review, it is clear that the people who use
mental health services should be placed at
the centre of the commissioning process.
Therefore, this review recommends that CCGs
should set up a VbC infrastructure where
possible and develop ways in which they can
begin to actively collaborate with service users
as equal partners.
7
1. Service user and carer
leadership in values-based
commissioning: a review of
the literature
1.1 Contextual background
Service user participation is vital to the
development of high quality mental health
services (Johnson and Murray-Howard,
2011; Coldham, 2012). Policy makers have
increasingly acknowledged that individuals
should be placed at the centre of their
care, and that service user opinions should
be heard, respected and acted upon
(Rush, 2004, Stickley, 2006). However, it is
only in the past decade that service user
participation has received the attention it
deserves (McIntosh et al. 2010). The 2001
Health and Social Care Act made service
user involvement a legal requirement, but in
recent years, the emphasis has moved away
from ‘involvement’, and towards more equal
partnership working and ‘co-production’ of
services (Stickley, 2006).
Recent policies, such as the government white
paper Equity and Excellence: Liberating the
NHS (2010) and the No Health without Mental
Health (2011) cross-governmental strategy,
have been underpinned by the principle of
‘no decisions about me, without me’ (see
Coldham, 2012 for further discussion). The
move towards a more ‘patient-led’ NHS and
‘personalized’ care has also increased the level
of individual responsibility service users will
have for their own care and support (Owens,
2011). Although some researchers have noted
that these changes have arisen as a result
of neo-liberal consumerism (Stickley, 2006;
Cowden and Singh, 2007), Carr (2007) has
emphasised that there is also the potential for
an unparalleled power shift to take place away
from managers and clinicians, and towards the
needs and wishes of service users.
1.2 Service user involvement in the
commissioning of mental health care
Despite widespread recognition of the
importance of service user participation, there
is still a great deal of scope for development,
particularly with regard to involvement in
mental health commissioning (Rush, 2004;
Stickley, 2006). The term ‘commissioning’ in
8
health care encompasses a variety of activities
(Keys, 2011; Heginbotham, 2012), but broadly
refers to the funding, planning, delivery and
evaluation of health care services. It has been
defined by the No Health Without Mental
Health strategy (2011) as ‘the process of
assessing the needs of a local population and
putting in place services to meet those needs’
(p.86). The commissioning cycle (see figure 1)
is made up of eight stages:
1) Assessment of needs
2) Review of current services and opportunities
3) Deciding priorities
4) Risk management
5) Strategic planning
6) Implementation of contract
7) Provider development
8) Managing performance
The NMHDU (National Mental Health
Development Unit) and The North West
Mental Health Implementation Programme
(2011) have identified that the traditional
point of involvement of service users in the
commissioning cycle is between stages 5 and
6, following the collation of a strategic plan and
prior to the commissioning of contracts. They
argue that this stage may be too late, and that
service users and carers need to be involved at
different stages of the commissioning process,
otherwise it may lead to de-motivation and
frustration. Other researchers have argued
that current service user participation in
mental health commissioning is limited with
many commissioners lacking the skills and
confidence to engage service users and carers
effectively (Mauger and Deuchars, 2010).
Participation initiatives have also been found to
be ‘patchy’ in their execution (McIntosh et al.
2010) and continue to be conducted along the
lines of ‘externalised consultation exercises’
(Carr, 2007: 268).
Figure 1: The ‘traditional’ commissioning cycle
2
model actively involves patients and carers,
this approach reflects engagement and
consultation rather than true co-production.
Therefore, the following review aims to
discuss the developing area of service user
leadership and co-production with reference
to commissioning practice. It discusses
the emergence of the term ‘values-based
commissioning’ and its relationship to ‘valuesbased practice’. It also contextualises these
ideas within the changing landscape of mental
health commissioning.
However, several models of service user
involvement in commissioning have emerged
in recent years, including the ‘network
approach’, ‘co-productive commissioning’,
‘reverse commissioning’ and ‘values-based
commissioning’ (NMHDU, 2011)1. The Joint
Commissioning Panel VbC Guide (2013)
outlines these approaches and discusses the
potential for developing relationships between
them. It suggests that while the clinical network
1.3 Evidence-based practice
For further details of approaches such as ‘Reverse
Commissioning’ see also the JCP VbC Guidance (2013).
2
1
Prior to assessing the development of ‘valuesbased practice’, it is necessary to introduce
the notion of ‘evidence-based practice’, which
has traditionally informed the commissioning of
mental health care services. ‘Evidence-based
practice’ (often referred to as EbP) centres on
the idea that policy making and practice will be
more effective if based on systematic, objective
NHS Isle of Wight (cited in House of Commons
publication on commissioning)
and rigorous research evidence (Cooper, 2003;
Thomas et al. 2010). Consequently, it tends
to draw on quantitative methodologies and
experimental research designs (Thomas et al.
2010). Some researchers have argued that
evidence-based approaches tend to overlook
the complexity of decision-making in the area
of health and social care (McCarthy and Rose,
2010) particularly with regard to the thoughts,
feelings and opinions of service users (Hewitt,
2009; Rose and Gidman, 2010). As such,
many have argued for further use of qualitative
methods to help inform the current research
evidence (Geanellos, 2004; Barry, 2007;
Thomas et al. 2010).
1.4 Values-based practice
‘Values-based practice’ (VbP) has been
developed as the values counterpart of the
‘evidence-based’ approach (Fulford, 2004).
It does not seek to replace EbP, but instead
aims to make clinical decisions on the basis
of ‘values’ as well as ‘facts’ (Woodbridge
and Fulford, 2004). Fulford (2011) draws
on Sackett’s (2000) work to define ‘values’
9
as the ‘unique preferences, concerns,
and expectations each patient brings to a
clinical encounter’ (Sackett, 2000: 1, cited
in Fulford, 2011). Although clinical decisionmaking is often perceived to be ‘value free’,
Fulford (2004) claims that facts are informed
by values and consequently influence the
clinicians’ understanding of diagnosis as
well as treatment and management. He also
stresses that values are multiple, dynamic
and contextual, and are usually noticed only
when they come into conflict with each other.
As such, VbP is, in part, a response to the
increasingly complex and conflicting values
involved in clinical decision-making (Fulford,
2004; Fulford et al. 2012). It aims to take into
account the values of all parties involved in the
decision-making process, including clinicians,
services users and carers.
VbP is also ‘skills-based’ as practitioners
develop skills to elicit and negotiate the
multiple and diverse values of service users
when making decisions in clinical settings
(Fulford, 2004). They are also encouraged
to become increasingly aware of their own
Figure 2 –
Ten Principles
of Valuesbased Practice
(Dodd, 2011.
Adapted from
Woodbridge
and Fulford,
2004)
10
personal values and how these can affect
decision-making (Thomas et al. 2010). It is
an approach that aims to empower service
users to have more direct control over their
treatment, the services they access and
choice about their care (Fulford, 2011). Thus,
Allott et al. (2005) emphasise that VbP is not
about telling people what values they should
have, but seeks to help people to develop
the skills they need to work in a mutually
respectful way that allows each individual’s
values to be incorporated into decisionmaking in social policy.
Fulford (2004) has set out ten principles of
values-based practice, together with a case
study for how the principles can be applied
in a mental health setting. These principles
(adapted from Dodd, 2011) are reproduced in
Figure 2, below.
VbP seeks to be responsive to the needs
of service users and supports their active
participation in services through the principles
of person centredness and partnership
(Adams, 2006; Hewitt, 2009). However, it
Principle
Explanation
1Awareness
Raising awareness of values in every situation
2Reasoning
Reasoning about values and revealing the
values inherent in such reasoning
3Knowledge
Information about values should be gathered
in every situation
4Communication Communicating values is important in
resolving conflicts and making decisions
5Person-centredness
The first source of information on values is the person in each situation
6Perspectives
Conflicts are resolved by balancing different perspectives not by applying rules
7Facts
All decisions depend on values as well as facts
8Values
Values are generally noticed when there is a
conflict or lack of consensus
9 Scientific knowledge
Increasing advances in scientific knowledge
increase the complexity of values in care
10Partnership
Decisions are reached by people working
together in partnership
has received some criticism, particularly with
regard to its emphasis on process rather than
outcome (Thornton, 2011). For example,
Brecher (2011) argues that the assumption that
conflicts can be resolved to the satisfaction
of all those involved is ‘naïve’. He expresses
concern that in practice clinicians or managers
will impose their values on service users
because they will continue to hold power.
This point is particularly relevant in the field of
mental health because power can be wielded
through compulsory treatment. Similarly,
Hutchinson (2011) has ‘substantial misgivings’
(p.999) as to the specifics of VbP. He and
Brecher (2011) share the belief that although
VbP is presented as ‘value-neutral’ it actually
reflects the individualising values of ‘neoliberalism’, whereby ostensibly benign and
‘natural’ discourses of individual choice and
responsibility overlook social inequalities, and
seek to regulate and marginalise the most
vulnerable people in society (see Stickley, 2006
and Rose 1996 and 1998 for further critique).
Notwithstanding these criticisms, VbP has
had a substantial impact on UK policy making
and practice (Fulford, 2011). For example,
the National Institute for Mental Health in
England (NIMHE) values framework (DoH,
2004) is based on the principles of VbP. It
has been adopted as one of the underpinning
approaches (alongside EbP) in The Ten
Essential Shared Capabilities (DoH, 2004),
which aims to support practitioners working
in the field of mental health. Training materials
in VbP, such as Whose Values? (Woodbridge
and Fulford, 2004), have also been developed
by the Sainsbury Centre for Mental Health and
Warwick University (for further examples, see
Simons et al, 2010, and Dodd, 2011).
1.5 Values-based commissioning
In recent years, the term ‘values-based
commissioning’ (VbC) has been used to refer
to the way the principles of values-based
practice are applied to a commissioning
environment (England, 2011). Very little has
been specifically written about VbC as it
is a relatively new area of work. However,
Heginbotham (2012) defines it as:
...the practice of recognising and acting
on the differing values held by all those
engaged in making health and social care
decisions, in order to plan and implement
health and social care that is culturally
relevant and appropriate, clinically and
economically effective, and addresses need
in a way that reflects the values of those
using and providing care. (p.ix)
Thus, VbC aims to enable service users
and carers, both directly and through
representative bodies, to set commissioning
direction and strategy. Commissioning is
a complex area and is characterised by a
wide range of different ‘stakeholders’ with
diverse and sometimes conflicting agendas
(Heginbotham, 2012). Consequently it
presents a particular set of challenges. In
order for partnership working to be effective
and meaningful for all concerned, attention
needs to be paid to the complex power
relations at work in this area. Researchers
such as Stickley (2006) have drawn on
the work of Foucault (1980) as a means of
discussing how organisational structures
preserve and maintain power through the
use of exclusive forms of language and
knowledge. McIntosh et al. (2010) explain this
concept in the following manner:
...the language of those in power serves
to reinforce the powerlessness of others.
For service users engaging in partnership
working, this is a crucial way in which they
can be alienated from sometimes complex
processes. Very often, service users will
lament the overuse of jargon and the ways
in which this prevents real and meaningful
participation. Those without the necessary
vocabulary remain, inevitably, in a position of
powerlessness (McIntosh et al. 2010: 135)
For VbC to work effectively in this setting,
McIntosh et al. (2010) suggest that
professionals need to ‘take an honest view
of their own capacity to share power and
ultimately the label of ‘expert’’ (p.136). Carr
(2007) also calls for ‘flexible and creative
responses to the need for inclusive dialogue
between all social care stakeholders’ (p. 272).
Although VbC is a relatively new area of
development, examples are already beginning
to emerge. For example, in Canada a panel
of service users has undertaken a successful
evaluation of the mental health outpatient
service (Perreault et al. 2010). In the UK,
commissioners in Northamptonshire have
worked with service users to develop cocommissioning as part of a procurement
exercise. In London, NSUN (National
11
Survivor User Network) has worked with
Hackney Social Care Forum (HSCF) and
Social Action for Health (SAFH) to facilitate
a set of workshops on commissioning with
a view to encourage service users to advise,
and eventually lead, on the commissioning of
voluntary sector services. Further examples
of good practice are available in the Joint
Commissioning Panel Guidance on Valuesbased Commissioning (2013).
Significant contributions are being made in
the area of service user leadership and coproduction with regard to commissioning
practice (Johnson and Murray-Howard, 2011;
Mauger and Deuchars, 2010). Due to the
relatively new nature of the work, there is still a
great deal of scope for development. Further
empirical work and evaluation also needs to be
undertaken with regard to how VbC can work
in practice. However, before considering some
of these issues in more detail, it is important to
locate this discussion more specifically within
the current context of health and social care.
2. The changing
landscape of mental health
commissioning
Health and social care commissioning
is currently going through a period of
considerable change (England, 2011). Prior
to the Health and Social Care Act (2012),
mental health services were commissioned by
Primary Care Trusts (PCTs). In England, the
commissioning of mental health services was
managed by 151 PCTs (six of which were Care
Trusts). Each PCT covered a separate local
area and received about 80% of the total NHS
budget directly from the Department of Health
(DH). The role of PCTs was to decide which
health services a local community needed and
to provide and commission these services.
Mental health services have also needed to
work closely with their social care counterparts
to provide complete care for people with
severe and enduring mental health problems.
This has been provided in the form of ‘social
care packages’ organised through local
councils. Consequently, ‘joint commissioning’
was designed to provide more integrated
health and social care, ensure value for money
and bring about improved services.
12
Following the Health and Social Care Act
(2012) new organisations will be responsible
for making decisions about mental health
services. The PCTs and SHAs (Strategic
Health Authorities) will be abolished and
funds will instead be transferred to new GPled clinical commissioning groups (CCGs).
CCG boundaries are mostly coterminous
with Local Authority boundaries with one or
two exceptions. A full list of CCGs and their
geographical boundaries can be accessed at:
http://www.england.nhs.uk/wp-content/
uploads/2013/03/ccg-map.pdf
3. Existing service user
involvement in mental health
commissioning
These CCGs will have a legal duty to involve
service users and ideally they will have
a named GP who will provide a clinical
perspective on the commissioning of mental
health services. At a national level, a new
NHS Commissioning Board will be assessing
the quality of commissioning carried out by
CCGs. They will also commission GP services
and many specialist mental health services
(eg. services in prisons).
3.1 Action for Service Users Group (AfSUG) Birmingham
Within each local authority area, Health and
Wellbeing Boards are being set up. They will
be responsible for assessing and addressing
the current and future health and social care
needs of local communities. As such, they
will carry out assessments known as Joint
Strategic Needs Assessments (JSNAs) and
are required to involve the local community
in this process. A new organisation called
Healthwatch England is also being set up
and locally there will be a new network of
Healthwatch organisations. The Healthwatch
organisations will replace the current Local
Involvement Networks (LINks). They have
been created to enable patients and the
public to influence and improve their local
health and social care services. The way in
which these organisations involve service
users is likely to vary across the country, as
these decisions will be made at a local level.
Whilst these changes take place, there is
likely to be some confusion and uncertainty.
However, for a clear and detailed explanation
of the changing landscape of mental health,
see No decision about us without us: A guide
for people who use mental health services,
carers and the public (2012).
Before turning to discuss how VbC could
be implemented within this context, it is
important to consider the level of service user
involvement and leadership that currently
exists. The following list is not exhaustive by
any means, but provides some examples of
existing service user involvement in the West
Midlands and Birmingham in particular.
AfSUG was set up with initial funding from the
Birmingham PCTs to provide an independent
service user input into the mental health
commissioning process. The group is in the
process of becoming financially independent
by raising funds through funding applications
and income from training and service user
consultancy. AfSUG is currently based with
Digbeth Trust. Service user representatives
have participated in procurement boards to
set up awards contracts for day services, and
learning and work services.
The Integrated Commissioning Board (ICB) is
currently responsible for the commissioning
of mental health services in Birmingham. It
operates a pooled budget under an agreement
with Birmingham City Council. After April 2013,
it is likely that this will continue with a mental
health commissioning team hosted by one of
the Clinical Commissioning Groups (CCGs).
The ICB arranges a bimonthly consultation
meeting of the Mental Health Partnership
Board with representatives from AfSUG, carers,
the third sector and Birmingham and Solihull
Mental Health Foundation Trust (BSMHFT).
This is currently in the process of being revived
with fresh terms of reference. At present it is
likely that AfSUG will continue to be involved in
the commissioning process as an independent
service user group. However, the exact form
that this will take remains to be seen.
3.2 Mental Health Action Group –
Birmingham
The Mental Health Action Group is part of
Birmingham LINk (Local Involvement Network).
It is a voluntary organisation that listens to
people’s views on health and adult social care
to influence the commissioning and provision
of services in the city. Meetings are held with
representatives from the Joint Commissioners
so service users can find out and influence
what services are being commissioned.
From April 2013, Birmingham LINk will
be replaced by Healthwatch Birmingham.
Birmingham Voluntary Service Council (BVSC)
which is the current host for the LINk has
been awarded the contract to set up the new
Healthwatch as a limited company. Various
forms of Healthwatch membership are
being proposed, from an ‘active menber’, to
‘informed member’. Members of the Mental
Health Action Group are currently uncertain
as to how they will be involved in mental
health commissioning through Healthwatch
Birmingham.
3.3 User Voice - Birmingham and Solihull MH
Foundation Trust
User Voice was created in 1996 to support
and encourage better user representation
throughout the mental health trust. The project
also works with primary care, social care
and voluntary sector providers. User Voice
organises meetings in different settings, for
example, inpatient wards and at local trust
resource centres. Senior trust managers and
directors are encouraged to attend meetings to
explain trust polices and listen to users’ views.
Proposals for major changes are referred to
meetings for users’ input at early stages. User
Voice workers and their user representatives
attend all levels of committees in the trust to
represent users’ views.
3.4 Service User Involvement in Coventry
Service users in Coventry have been involved
in the commissioning process through the local
LINk, AIMHS (Actively Influencing Mental Health
Services) and the Mental Health Partnership
Board. Coventry LINk (shortly to become
Healthwatch) and the previous PPI (Patient
and Public Involvement) Forums have been
monitoring mental health services for several
years and striving to improve service user
provision in the area. Coventry AIMHS is a
service user organisation that has been working
with the NHS and local authority commissioners
to monitor services and act as a conduit
between service users and commissioners
by running community and in patient forums.
13
AIMHS have been consulted and used for
recruitment, training, quality accounts and
research. The Mental Health Partnership Board
was a combined statutory, voluntary, service
user and carer organisation that oversaw the
mental health services for the commissioners.
Service users were involved for the annual quality
audit and when there was a need to evaluate a
particular service. The board was dissolved at
the beginning of last year and the Health and
Wellbeing Board has now been established.
3.5 Mental Health Partnership Board –
Dudley PCT
The Mental Health Partnership Board in Dudley
provides a forum for user involvement in the
commissioning process and service users
are involved in the development of service
specifications. From 2013/14 service users
may also be involved in the development
and performance monitoring of CQUIN
(Commissioning for Quality Innovation) schemes.3
3.6 The Worcestershire Mental Health
Consultative Group
Five service users/people with lived
experience of mental ill health are currently
involved in The Worcestershire Mental Health
Consultative Group and quarterly meetings
of the Worcestershire Health & Social Care
Partnership. The Joint Commissioning Officer
chairs these meetings and representatives
also attend from the Worcestershire Health
and Care Trust, a variety of third sector and
voluntary organisations and Worcestershire
County Council. The meetings provide an
opportunity for service users to feedback
their views on future proposals and actions in
terms of developing Mental Health Services
in Worcestershire. It also provides an
opportunity for service users to influence the
Joint Commissioners’ thinking and receive
advance notice of issues generated by the
Government’s agenda.
A more extensive and detailed mapping
exercise is required in order to understand
how each area in the West Midlands intends to
involve service users in the new mental health
commissioning structures from April 2013.
However, these examples appear to indicate
The CQUIN payment framework enables commissioners
to reward activity by linking income to the achievement of
improvement goals.
3
14
that although a considerable amount of service
user consultation currently takes place, there
continues to be comparatively little service user
leadership or joint decision-making in relation
to service design and delivery.
With regard to values-based commissioning
initiatives in the local area, a group of clinicians
and service providers set up the West Midlands
Mental Health Commissioning Modelling Group
to model collaborative commissioning in the
changing landscape of health and social care.
Further work was also carried out with service
users in the form of group interviews and semistructured interviews. The findings presented
here are based on an evaluation of this data.
4. The West Midlands Mental
Health Commissioning
Modelling Group
In December 2010, NHS West Midlands
convened a Mental Health Commissioning
Modelling Group (MH-CMG). The group
met monthly until December 2011 and was
formed with the intention of bringing together
organisations and networks with an interest
in mental health commissioning. The group
included representatives from social care, PCTs,
public health and GP practices. A service user
was also a member of the group. The CMG
aimed to set out principles of best practice with
regard to the concept and delivery of valuesbased commissioning. The shared purpose of
the group was agreed as follows:
•To articulate ‘what good looks like’ for
models of care and support across the major
areas of provision and prevention within
mental health and learning disabilities.
•To model collaboration between a variety of
‘stakeholders’ to develop commissioning in
the new NHS and reflect an extended role for
local government.
•To provide a platform for patient and carer
leadership of collaborative commissioning.
•To provide an evidence base for valuesbased commissioning through the process of
evaluation.
•To inform and be informed by the Joint
Commissioning Panel for Mental Health
and to work in tandem with commissioning
development activities in other parts of the
country.
Meetings were structured around presentations
focusing on what good commissioning would
look like in a number of different areas (eg.
dementia, compulsory treatment, liaison
psychiatry). Participants agreed to raise the
profile of the agreements made by the group
through various networks, and bring issues
back to the group on behalf of network
membership. They also agreed to attend for at
least a year in order for the aims of the CMG to
be achieved.
5. Aims and objectives
As part of the evaluation of the West
Midlands Mental Health Commissioning
Modelling Group (MH-CMG), the National
Survivor User Network (NSUN) and NHS
West Midlands wanted to explore the
mechanics of VbC, particularly with regard
to how mental health service users and
carers could actively participate in, and
ultimately take joint ownership of, mental
health commissioning. This, in conjunction
with an awareness of the issues outlined in
the literature review, initiated the following
research aims:
•To develop a model of best practice for
VbC.
•To find out from service users and carers
how values-based commissioning can
effectively work in practice.
•To provide recommendations to the Joint
Commissioning Panel (JCP) in order to feed
into its guidance on VbC.
In order to fulfill these aims, the following
objectives were devised in order to generate
the data:
•To synthesise the literature relating to VbP
and VbC.
•To analyse the minutes of the MH-CMG
meetings.
•To conduct group interviews with service
users and carers regarding good practice in
VbC.
•To conduct one-to-one semi-structured
interviews with service users and carers with
regard to how VbC can effectively work in
practice.
•To include recommendations from the
evaluation in the JCP Guidance on VbC.
6. Consultation with service
users and carers
In order to fulfill the aims set out in section
5, a qualitative methodology was selected
for the consultations with service users and
carers. This allowed for the generation of
rich, detailed, contextual data (Seale, 2004).
By focusing on the ‘lived experience’ of
participants, interactions that take place in
this setting allow participants to reflect on
their own actions, emotions, and experiences
in different social contexts (Mason, 2002).
As such, qualitative methodologies have the
potential to empower research participants as
they are assisting in the process of knowledge
production rather than being positioned as
research ‘objects’ in a scientific experiment.
Consequently, this approach is in keeping
with the theoretical stance of ‘values-based
practice’, which aims to place service users
and carers at the heart of the research
process.
6.1 Group interviews
The group interviews were informed by ‘focus
group’ techniques. Focus groups aim to draw
on the attitudes, feelings, values and beliefs of
participants within a social gathering (Kreuger
and Casey, 2009). As such, they elicit a wide
variety of views, as group members discuss
topics with each other (Gibbs, 1997). Group
interviews were selected for the following
reasons:
•In one-to-one interview situations the
researcher tends to control the interaction,
but in focus group settings participants are
more likely to take initiative and become
empowered through this process.
•They enable a large amount of data to be
gathered in a relatively short period of time.
•They allow researchers to explore the extent
to which there is consensus on a topic
(Morgan and Kreuger, 1993).
•They are in keeping with the philosophy of
values-based practice because the data
that is generated focuses on the values,
feelings and experiences of service users
and carers.
The research team facilitated group
discussions around good practice in valuesbased commissioning, drawing on established
workshop methods to enable participants to
15
engage more fully (Kreuger and Casey, 2009).
Emphasis was also placed on the unique
perspectives of participants and their individual
experiences as service users and/or carers.
6.2 One-to-one interviews
It was decided that the semi-structured
interview format was the most appropriate to
use for the consultations because it provided
a degree of structure whereby certain themes
could be explored, but where there was also
some flexibility to ask further questions during
the interview (Simons, 2009). It allowed for
a greater rapport to develop between the
participants and interviewer (Oakley, 1981) and
positioned the interviewee as more than just a
‘passive vessel’ from which to gain knowledge
(Holstein and Gubrium, 1997). This method
is also in keeping with a ‘values-based’
approach because it places the interviewee
at the heart of the research process as they
are encouraged to reflect in detail on their on
actions, emotions and experiences.
The interview schedules for the consultations
were prepared by generating questions on
the theme of values-based commissioning
and service user involvement. The questions
were then developed in relation to categories
informed by the National Involvement
Partnership (NIP) ‘PPPI’ baseline standards
for promoting good practice in service user
involvement.4 The categories are as follows:
Purpose: having a clear purpose for
involvement enables everyone to understand
their role and avoids the risk of tokenism and
involvement for its own sake.
Presence: the number of service users and
carers involved: their age, gender, ethnicity,
diagnosis/treatment, experience etc.
Process: at what level in the project are
service users and carers involved? What roles
are they occupying? What support do they
have access to?
Impact: what impact, if any, are service users or
carers having on the project or programe? What
impact is the involvement having on them?
These categories provided a clear structure for
the interview and a framework for subsequent
analysis (see Appendix A for the full interview
guide).
16
6.3 Online survey
Finally, an online survey was designed
via ‘Survey Monkey’ (a software tool
used to create and analyse surveys and
questionnaires). Initially, the project team
planned to conduct semi-structured interviews
with commissioners and CCG Mental Health
Leads either face-to-face or via the telephone.
However, it was subsequently decided that
due to the time constraints of professionals
it would be more effective to design a short
questionnaire that could be completed online.
The questionnaire comprised the following
questions:
1) Can you describe your role and
responsibilities?
2) What role could service users have in
mental health commissioning in the new
NHS commissioning landscape?
3) Would an advisory panel of mental health
experts (by lived experience) be of value
to you when commissioning mental health
services in your locality?
4) What would increase the credibility or
value of this panel or the likelihood of you
engaging with it when commissioning
mental health services?
5) How would you envisage interacting or
interfacing with this panel?
The survey was publicised through the network
created from the WM-MH commissioning
modelling group distribution list and received 5
responses.
A short survey was also designed for service
users who did not wish to be interviewed in
person or via the telephone. Although a link
to the online survey was provided in e-mails
and information sheets about the project it is
possible that this option was not emphasised
enough, as no questionnaires were completed
by service users.
6.4 Recruitment and ethical issues
A broadly ‘opportunistic’ approach (Martin,
2000) was taken with regard to the sampling
process. However, participants were not
Please see http://www.nsun.org.uk/modules/
downloadable_files/assets/baseline-standards-handoutmay-2011.pdf for more details.
4
recruited to the project on an entirely random
basis. The team decided to publicise the
work to individuals who were already
involved with, or were interested in, service
user involvement initiatives. It was felt that
these service users who already had some
knowledge and experience of mental health
commissioning, attended meetings etc.
would be able to share their experience
of involvement as ‘experts by experience’
(particularly with regard to the commissioning
process) and highlight areas for improvement.
Consequently, the project was publicised
through ‘mailouts’ to members of NSUN,
the Afiya Trust (which works to reduce
inequalities in health and social care provision
for people from racialised communities), and
Suresearch (a service user group connected
to Birmingham University). The project
manager also attended a Suresearch meeting
to discuss ‘values-based commissioning’
and explain the work in more detail. Potential
participants were provided with an information
sheet about the consultation and its aims (see
Appendix B) and questions were invited.
10 people attended each of the three group
interviews, and these were held at Birmingham
University. 11 service users (one of whom was
also a carer) volunteered to take part in the
one-to-one interviews. Within this group, eight
were white, three were of BME origin, seven
were women and four were men. The majority
of participants were over 35 years old. Most
of the interviews were held in the Suresearch
office at Birmingham University. Two interviews
were conducted via the telephone and one
was held in the participant’s home. Interviews
lasted up to 45 minutes and participants
received a payment of £30 following their
participation. All interviews were audio
recorded, and details of transcription and data
analysis are provided in section 6.5.
The team were keen to empower service
users through their participation in the project,
and enable them to voice their opinions on
values-based commissioning in a way that
was meaningful, rather than tokenistic. During
the course of their lives many mental health
service users have experienced pressure from
those around them (including medical experts)
to make certain decisions or behave in a
particular way. This is a particularly significant
issue for those who have previously been
sectioned without their consent. As such, the
interviewer(s) emphasised the voluntary and
flexible nature of participation (ie. they could
withdraw from the project at any time) and also
explained that there were no ‘right’ or ‘wrong’
answers to the interview questions.
At the start of each interview, participants
were also informed about the level of personal
information that would be kept about them
and whether they wished to make anonymous
or named contributions. Some participants
were happy to be named, but others wished
to be anonymous. Therefore pseudonyms
have been used throughout this report to
ensure confidentiality. To enable participants
to have a greater degree of control over their
data and the final report, a draft of the findings
section was sent to each interviewee and
they were asked to approve their quotes and
pseudonym. At this stage, some participants
decided to choose a different pseudonym and
asked to clarify or emphasise various points
that had been made. These suggestions have
been incorporated into the findings section of
the report.
6.5 Transcription and data analysis
On completion of the group and one-to-one
interviews, they were transcribed and the
data that had been generated was analysed.
However, the process of transcription is not a
neutral one, but dependent on the theoretical
approach and overall aims of the project
(Taylor, 2001). For example, conversation
analysts tend to produce detailed transcripts
as they aim for a scientific analysis of language
(Branley, 2004). However, Taylor (2001) claims
that this form of transcription can be difficult to
read, and can also reduce the amount of data
that can be analysed. As such, a decision was
made to produce naturalistic transcripts as
opposed to highly annotated ones.
The Framework Analytical Approach (Ritchie
and Spencer, 1994) was used to analyse the
CMG minutes and group interview data. This
method is based on the grounded theory
approach of data analysis where theories
are generated from the data. Framework
is a generic method, providing a versatile
means for qualitative analysis, rather than
being a highly specific technique. It provides a
procedural structure to which the researcher
can apply his/her own data. As such it can be
applied to a wide variety of qualitative methods
of data collection with differing aims and
objectives. Whilst incorporating systematic,
17
comprehensive methods, it also allows a
flexibility and adaptive process of analysis.
Perhaps most importantly, the transparent
and structured approach used in this method
allows individuals, other than the primary
analyst to be able to easily access the data.
There are five key stages to analysing
data using this process, which include
familiarisation, identification of a thematic
framework, indexing, charting and mapping
and interpretation of the data. Initially
transcripts are read and re-read, allowing the
analyst to familiarise themselves thoroughly
with the data. This process results in a
detailed thematic index of the data. This stage
of the process reflects the open coding of
Grounded Theory. Numerical codes from the
index are then applied to each transcript. The
data is then re-arranged according to the
emergent themes identified, a process known
as charting. Mapping is the final stage of the
process where attempts are made to interpret
the data and identify where associations can
be made between themes and explanations
generated.
Following transcription, the face-to-face
interview data was analysed using the PPPI
framework for service user involvement,
described in section 6.2. Data was initially
categorised according to each question. The
data was then coded by highlighting emerging
themes and recurring words or phrases. Key
themes were identified within each of the
categories of Purpose, Presence, Process
and Impact and these categories were used
to structure a discussion of the results.
6.6 Limitations
This is a qualitative study with a small sample
size, and no claims can be made with regard
to the empirical generalisability of this piece
of work. However, data gathered from the
consultations; the group interviews, one-to-one
interviews, and online questionnaires, have
been loosely ‘triangulated’ with the minutes
of the MH-CMG meetings. It is recognised
that this strategy will not automatically
increase the validity of a study, however it
can ‘add rigor, breadth, and depth to any
investigation’ (Denzin and Lincoln, 1998: 4).
Consequently, the range of methods used to
elucidate the issues surrounding values-based
commissioning have generated rich, detailed
and contextual data.
18
7. Findings from the
Commissioning Modelling
Group (CMG), group
interviews with service users
and online survey
Over the course of the year (2010/2011) 98
people attended the West Midlands Mental
Health Commissioning Modelling Group.
They represented a wide range of statutory
and voluntary organisations, indicating
that the promotion of the group had been
successful. Meetings were reasonably well
attended, but as the months progressed,
the numbers of those attending dropped
gradually (see table 1). Furthermore, of
the 98 people who attended the CMG, 58
attended one meeting, 14 attended two
meetings, and only 11 people attended
more than five meetings (see table 2). Group
members agreed they would to commit
to attending for the whole year in order to
achieve the stated outcomes and allow an
evaluation to be completed. However, the
figures suggest that although there was a
breadth of support for the CMG, only a group
of around 10 people were able and willing
to commit to the group and sustain meeting
attendance. Therefore, if a VbC panel was
convened in the future, there would need to
be an emphasis upon regular and sustained
commitment from all those involved.
Furthermore, only one service user attended
the CMG meetings, despite the fact that the
group was set up to model ‘collaborative
commissioning’. This limited involvement
was seen to be tokenistic by some of the
service users who participated in this project.
As such, it had damaged the credibility of
the CMG and VbC more widely (see section
8.1 for a more detailed discussion of this
point). Consequently, any values-based
commissioning panel that intends to be
genuinely collaborative should involve more
than one service user.
Date of meeting
Number of
people attending
Number of
Number of people
meetings attendedattending
2010 December31
1
58
2011 January27
2
14
February19
3
7
March30
4
2
April
21
5
6
May
17
6
5
June25
7
3
17
8
1
September17
9
0
October12
10
1
November10
11
1
July
DecemberNo record kept
Moving on to address the group interviews,
participants were asked to identify examples
of good practice in commissioning. However,
many group members were angry, frustrated
and disillusioned with the system and
discussions understandably focused on
negative personal experiences. Facilitators
concluded that their questions to the group
had not been sufficiently specific or directive
and that there was a need for more focused
one-to-one interviews addressing service
user involvement in commissioning more
directly. Although some examples of good
practice were identified, through analysis
of the data it was possible to identify key
themes and areas of good practice from
examples of negative experiences, where the
values of service users had been overlooked
or ignored.
7.1 Good practice in values-based
commissioning
The following themes arose from analysis of
the CMG minutes, group interview, and online
survey data:
i. Early diagnosis and intervention
•Mental Health care should, to as great a
degree as possible, be assembled around
primary care.
•Alternatives to hospital care should be
developed (including respite care and day
care) and redesigned to reflect greater
involvement of patients in their operations.
Table 1 (left). Table 2 (above)
•There is a need to redirect resources,
allowing more money for prevention, early
intervention and common mental health
problems that potentially can be dealt with
in surgeries, before there is a need for
secondary care or permanent support.
•Mental health workers/health trainers could
be located in primary care settings. There
is also a need for GPs who specialise in
mental health.
•Primary care staff should increase their
knowledge of, engagement with, and
interest in mental health conditions.
•Mental health awareness training should be
provided for GPs, nurses and other primary
care staff.
•GPs need to make more time for
consultations and improve their consultation
skills.
ii. Swift referral to the appropriate person/
place
•There needs to be a reduction in emergency
admissions for conditions that could have
been managed in primary care.
•Different approaches are needed for those
who are new to the system and those with
long-term conditions.
•People with long-term conditions who are
familiar with the system should be able to
self-refer and not have to go through the
GP. Going through the same forms and
processes was seen as frustrating and a
waste of resources.
19
iii. Same care from all GP surgeries and
mental health providers
•There are currently wide variations in
performance and evidence of gaps in the
quality of care. Many service users felt that it
continued to be the ‘luck of the draw’ as to
whether professionals were respectful and
‘values-based’ in their approach.
•Care should be standardised with regard to
policies and protocols, thus addressing GP
practices that perform poorly compared to
others.
•An ‘atlas of variation’, showing how service
provision varies across the UK could
be used to highlight local problems and
successes, create discussion and encourage
collaboration.
iv. Clear communication and holistic services
•There is a need for better communication,
joint working and linking up of separate
services.
•Service users are keen to access different
services ‘under one roof’. Homeless projects
such as Sifa Fireside in Birmingham were
cited as good examples of this.
•Professionals should improve their
communications with each other, particularly
with regard to care plans.
•Spirituality needs to become more
embedded in the culture of organisational
management, workforce capability and the
process of care and support.
•Talking treatments should supersede
medication as the evidence-based treatment
of primacy.
v. Continuity of care
•Continuity of care is important. Ideally, service
users should see the same psychiatrist
irrespective of the care setting, but in
‘functionalised’ (ie. specialist) settings this
can be achieved through consistent care coordination/case management.
•There is a need for more co-operation,
collaboration and communication
throughout services, and the development
of mechanisms for more continuity of care
across the service as a whole.
•Home care teams need to provide a greater
degree of support after individuals are
discharged.
•Ongoing support is important for those
individuals who have been branded
20
‘treatment resistant’ and have been in
the system for a long time. In a Payment
by Results (PbR) setting however, where
episodes of care are seen to have a
‘beginning, middle and end’, this requires
careful negotiation and a setting also needs
to have the resources available to do this.
vi. Collaborative relationships
•Respect for patients as people provides
an infrastructure for hope, opportunity and
agency.
•Peer support should become more
widespread and an intrinsic part of services.
•There is a greater need for advocacy and
supported decision-making.
•Service users should be empowered
to measure and improve the quality of
their care, for example, through PROMS
(Patient Recorded Outcome Measures)
questionnaires.
vii. Co-care vs. paternalism
•Person-centredness will only become
reality if the NHS preoccupation with risk
management (compulsory treatment) is
addressed.
•From a values-based viewpoint there are
opportunities to offer a choice of treatments
and medications to help build trust
between clinical teams and people at risk of
compulsory treatment.
•There continues to be a tension between the
‘evidence-based’ approaches of clinicians
and service user choice, or ‘values-based’
approaches.
•‘Right Care’ aims to address some of these
tensions by encouraging service providers
to pay attention to specific contexts and
delivering care in partnership with service
users.
•The increased use of personal care budgets
also provide an opportunity to support
people to take charge of making decisions
about how their care is delivered, and by
whom.
viii. Attitudes and approach
•There continues to be a need to move away
from the medical model of ‘things being done
to you’ and towards more person-centred,
holistic approaches.
•Professionals need to have a positive attitude
that is focused on recovery (as defined by
the service user). They should endeavour to
get to know each service user and develop a
good relationship with them.
•There is clear support for the development of
values-based approaches and the need for
‘a system based on rapport and engagement
rather than control and containment’ (service
user, group interview).
For a more detailed compendium of
recommendations for effective VbC across the
major areas of provision and prevention within
mental health and learning disabilities, please
see Appendix C: What Does Good Valuesbased Commissioning Look Like?
involvement. However, there is still a great
deal of confusion surrounding the new
healthcare landscape. There continues to
be uncertainty with regard to how service
users will be able to influence future policy
and practice and these concerns need to be
addressed.
•Further work is required with regard to
how ‘values-based commissioning’ can
be embedded into these new structures.
However, as a minimum, Clinical
Commissioning Groups should set up a VbC
infrastructure where possible and begin to
actively collaborate with service users as
equal partners.
7.2 The process and workability of VbC
iii. Intelligent use of the intelligence
With regard to VbC more specifically, the
following key themes were identified:
•Although ‘values-based practice’ has
been branded as a benign counterpart to
‘evidence-based practice’, this construction
needs to be problematised. Theoretical
and practical tensions are evident between
‘evidence-based’ models that aim to
standardise decision-making in favour of
scientific research, and ‘values-based’
approaches that prioritise ‘service-user
choice’ and ‘person-centredness’.
•‘Values-based’ approaches cannot be
easily subsumed into the ‘evidence-base’.
The challenges it presents will not be easily
resolvable. As such, the topic requires a
significant amount of further research from
a variety of theoretical paradigms in order to
inform future policy-making and practice.
•In the current financially driven landscape of
the NHS, some will favour a purely evidencebased practice approach and may be
sceptical of the qualitative and potentially
‘unscientific’ approach of values-based
commissioning. However, VbC complements
and helps to deliver the QIPP agenda, and
can be cost effective and efficient.5
i. Clarity and definition
•The concept of ‘commissioning’ needs to
be demystified. There needs to be a much
greater understanding of the different aspects
of commissioning and the new landscape of
clinician-led commissioning.
•Greater clarity is required with regard to what
‘values-based’ commissioning actually is.
Awareness needs to be raised, particularly
around the fundamental point that it is
not just about service user involvement or
participation, but about power sharing and
co-production of services.
•VbC needs to be differentiated from
other forms of commissioning due to its
emphasis on collaboration, equitability and
empowerment of service users. It is nonhierarchical and holistic in its approach.
•Further consideration is needed with regard
to how VbC will be realised in practice
(suggestions for this are discussed in
section 8).
ii. Influencing service development and
commissioning priorities
•Further mapping needs to take place in the
West Midlands area with regard to existing
service user involvement in commissioning
and how this will be affected by the new
structures which came into being in April
2013.
•The document ‘No decision about us
without us’ (2012) provides a clear overview
of the new structures and suggestions for
QIPP stands for Quality, Innovation, Productivity and
Prevention. The initiative aims to improve the quality and
delivery of NHS care, whilst simultaneously cutting costs.
5
21
8. Findings from the
interviews with service users
and carers
The majority of interviewees had a great deal
of experience within the field of service user
involvement, mainly locally and regionally, but a
couple had experience of involvement at national
and international level. They were familiar with
contributing to committees and panels, some
conducted freelance work as ‘Service User
Consultants’, and some had already been
involved with commissioning at a local level. The
majority of participants recruited were members
of Suresearch, a service user led group based
at the University of Birmingham with an interest
in research and education. However, the others
were recruited though a general advert for
participants through NSUN e-bulletins.
8.1 Purpose of Involvement
When asked about the general purpose of
service user and carer involvement in the
commissioning process, participants were
clear that that it was vital for people who used
NHS services to be listened to, respected
and taken seriously because as ‘experts
by experience’ and recipients of care, they
added great value to decision making. Many
interviewees drew on their own negative
experiences when explaining why service user
involvement was so important:
It’s about the patient and the patient knows
best want he wants. He knows when it [the
treatment] isn’t suiting him. And most of the
time it’s enforced on him. For decade after
decade he’s not listened to, he’s complaining
that his medication isn’t working, but it’s
being injected into his blood and he can’t do
anything about it. (Rajan, service user)
Rajan’s experiences had left him feeling
extremely angry. He stated that the NHS had
been ‘damaged by atrocious fools and sheer
materialism’, and that such ‘criminal neglect’
needed addressing. However, in spite of his
anger, Rajan also believed that some aspects
of the system had improved:
My psychiatrist is good, some of the
doctors are good […] My doctor has saved
my life three or four times […] The system
has improved. And that’s my strength. And
that’s my hope.
22
Although the recent Health and Social Care
Bill was viewed with suspicion by some
participants and seen as a ‘potentially
catastrophic re-organisation’, the reforms were
also seen as having the potential to herald
new opportunities for service user involvement
and with them ‘the possibility of questioning
the big brother approach’ to mental health
commissioning.
When asked more specifically about ‘valuesbased commissioning’ and ‘values-based
practice’, some of the interviewees stated that
their understanding of this was limited and that
their only knowledge of it had come from the
information sheet they had received before the
interview (see Appendix B). Others were more
familiar with the term and one service user
summarised VbC as follows:
Values-based commissioning is a
practice where everyone becomes equal
partners. Service users, carers, clinicians
and managers all become part of the
commissioning model regarding mental
health. There’s joint ownership and there’s
no power issues really. So, service users and
carers have more of a say in what goes on in
the services they receive. (Sunita, carer and
service user)
This explanation emphasises the importance
of service users and carers as ‘co-producers’
of services, a concept that is discussed further
in section 8.4.1. Others focused more directly
on ‘values’, in particular the potentially different
values that service users and practitioners
might hold, that could in turn influence
commissioning decisions.
I haven’t read as much as I would have liked,
but it’s about the different values that different
participants in the system bring. I guess
practitioners being aware of their own values
and the values of service users, which might
be influenced by cultural backgrounds. So,
hopefully it’s a counterweight to evidencebased practice. An example of that might
be in relation to employment. Getting back
into employment might be a key aim [at an
organisational level]. But there are other
things that might be more fundamentally
important for the service user. (Jonathan,
service user)
There’s this question of whose values are
we talking about? Are we talking about the
medical model? Social model? Any other sort
of model? Hopefully VbC will incorporate all
of that by including service users, patients in
the work. (Susan, service user)
Overall, there was a very positive response to
the idea of values-based practice and valuesbased commissioning. However, some service
users were more cautious in their response.
One service user felt that values-based
commissioning had the potential to be
‘tokenism wrapped up in a different way’.
This was due to his observation that only one
service user had been invited to attend the
West Midlands Mental Health Commissioning
Modelling Group:
It didn’t mean a great deal to me to be
honest. I thought it was just something they’d
thought of. Because with the commissioning
group, there was only one service user who
went there and they didn’t seem interested in
involving any other service users, so I thought
it was something they’d thought of. (Phil,
service user)
For this participant, the credibility of valuesbased commissioning had already been
damaged by its limited involvement of service
users on the Commissioning Modelling Group.
As such, he believed the idea of VbC to be
‘just something they’d thought of’, implying
it to be a tokenistic whim or gimmick. Other
participants responded more positively but
still cautiously to the term ‘values-based
commissioning’:
I think it is a good idea as long as it doesn’t
leave anyone out. As long as it includes every
relevant party in the NHS. Then it should be
fine. Theoretically. (Marie, service user)
I think it’s more jargon. But I think for me it’s
less about the words that are used, which
come and go, and more about the direction
of travel if you like. […] we’ve moved from
where we had to scream and shout to get
heard at all, to where someone’s actually
come along and asking. And that’s important.
(Ruth, service user)
Despite reservations about the term ‘valuesbased commissioning’, participants were clear
that there was a definite need for service users
and carers to be involved at all stages and
levels of the commissioning process.
8.1.1 Service users and carers: two distinct
categories
The questions in the interview schedule
frequently referred to ‘service users and
carers’. However, some interviewees rightly
questioned our conflation of these terms within
the interview:
I think there’s too much collapse between the
categories of carer and user. I think they’re
very distinct. […] In mental health, carers not
infrequently either are primary creators of a
mental illness of their cared for person, or
they are primary maintainers and developers
of it. So it isn’t appropriate for the two to be
put into the same box. Because apart from
anything else, the service user will never have
a voice. (Claire, service user)
Other service users stated that in their
experience the voice of the carer was often
‘too loud’ and expressed some frustration
with regard to carer involvement. One service
user, who was also a carer herself, said that
although service users may need carer support
in order to attend and participate in meetings, it
might be preferable to set up separate service
user and carer groups:
You may need to separate the two groups
to get more of a realistic lived experience.
How things are, how they can influence
commissioning, because I think people
will talk more openly if they have a specific
service user group or carer group. (Sunita,
carer and service user)
This idea was echoed by another service user
who stated, ‘you desperately need carers’
input, but you probably need to separate it to a
degree from service user input’. She suggested
that the first hour of a meeting could be service
users only, with carers sitting outside, or that
alternate meetings could be joint meetings
with service users and carers. All participants
who focused on this topic stressed the need
for sensitive and clear negotiation and good
group management skills when facilitating the
input of both service users and carers. It was
also stressed that there was a definite need for
carers to be able to participate in and engage
with values-based commissioning.
8.2 Presence
When participants were asked about the
23
kind of roles that service users and carers
needed to have to be fully involved in the
commissioning of mental health services, the
majority suggested that there should be a
definite presence on panels, committees and
steering groups:
I think they ought to be involved at the
highest level. I don’t know if service users
and carers are being encouraged to get
involved at board level. But that’s what I’d like
to see. […] We can all be involved at all levels
and that would really make it work, I think.
(Phil, service user)
They need to be on steering groups, they
need to be attending all the meetings
regarding joint commissioning and valuesbased commissioning. They need to be in
advisory roles, consultation roles, providing
that lived experience really. (Sunita, carer and
service user)
There was a strong feeling amongst
interviewees that service users should be
involved at every stage of the commissioning
process, rather than being involved in a
tokenistic manner once a particular project had
been designed. One interviewee specifically
focused on involvement in the tendering
process, suggesting that a couple of people
with ‘lived experience’ should be included
in all tendering decisions. Service users
have been involved in the procurement and
tendering process as part of a pilot initiative
in Northamptonshire, and this could serve
as a useful model in the West Midlands area
(see JCP VbC Guidance, 2013). Another
participant stressed the importance of
commissioners working with established and
independent service user groups, which could
potentially provide a more confident voice on
commissioning matters.
With regard to the roles themselves,
participants also laid emphasis on the need
for clarity and transparency from ‘professional
commissioners’ in terms of the roles that
would be taken on and the responsibilities that
people would have (these ideas are discussed
in more detail in the ‘Process’ section of this
report). Many also stressed the importance of
managing service user/carer expectations:
You need to know what the expectation is.
To have some idea of what changes can be
made. Because you might be thinking ‘I want
24
this’ and someone else thinks ‘I want this’
and it might be that neither of you can have
those things, but there might be something
that you could have. (Sarah, service user)
Where commissioners are constrained by
funds, or being dictated to from above, then
being very clear about that so that everyone
knows where they are. (Jonathan, service user)
As these participants point out, GP
commissioners need be open and honest
with service users and carers particularly with
regard to funding constraints. Although some
interviewees stressed the need for service
users not to ‘over-estimate themselves’ in
terms of the difference they could make,
it is also vital that service users do not
under-estimate their ability to influence the
commissioning agenda and make significant
changes.
8.2.1 Diversity, engagement and involvement
The participants were all keenly aware of issues
of diversity and the need to involve a more
diverse range of service users and carers,
particularly within groups such as Suresearch
which meets at Birmingham University:
Certainly the groups I go to are not
particularly representative in terms of age,
in terms of ethnic background. AfSUG
is better than Suresearch in terms of
ethnic diversity, but similar in age range.
(Jonathan, service user)
We need to go out there and find ways of
approaching individuals that are regarded as
being in ‘hard to reach’ communities. (Sunita,
carer and service user)
It isn’t just about cultural diversity. I think that
there’s kind of a class/education dimension
here. And regardless of the cultural roots
of the person, be they from African origins,
Carribean origins, Asian origins, Chinese
origins, American, English, whatever, if they
have been given a certain education or social
background you will see them filter through
the door of Suresearch. But if they don’t
have that social background, they won’t even
know it exists. (Claire, service user)
However, one participant also stressed the
importance of not reverting back to outdated
perceptions of ‘minorities’ when discussing
people who are marginalised or who may have
different opinions or values. Social identities,
such as gender, ethnicity, religion and social
class all intersect with each other and can lead
to multiple forms of oppression. As such, when
discussing issues of diversity and ‘minority
groups’ it is vital to remember the complexity
and heterogeneity of this category.
Interviewees were in agreement with each other
that in order to involve a wider range of service
users there needed to be some form of outreach
work. Many comments and suggestions were
made along the following lines:
You can commission people to facilitate
discussions or you can go to where people
are, waiting rooms, you know, you spend ages
in hospital waiting rooms, so you can sit and
talk to people… By people doing that you
could then… other people might be interested
to know more. (Susan, service user)
The panel then, I guess, would have
individuals that go out and talk to other
people. Because the panel members will be
the more articulate, the people who have a
culture of meetings, and don’t feel alienated,
or intimidated by all that. But they need to
have some support to go out and talk to
other people, and sit on the ward, you literally
sit on the ward and you chat to people.
(Ruth, service user)
You need to talk to people about
commissioning, because they don’t know
exactly what it means, do they? I mean,
getting people more involved and getting
people on panels as well, because at the
end of the day, that’s what we want really.
Even if you go out and talk to people about
commissioning, you want them more on
panels. (Maya, service user)
The use of social media (eg Facebook
and Twitter) was also mentioned as a way
of increasing the diversity of involvement,
particularly amongst younger people. However,
face-to-face strategies and the development
of networks were seen as being of primary
importance, as it was recognised that some
people might not be IT literate or have access
to a computer. Interviewees also observed that
some people might be wary of involvement due
to their own past experiences of the system, or
for a variety of social and cultural reasons.
Participants highlighted the need to reduce
inequalities in mental health services
and outcomes, and develop culturally
appropriate, responsive, needs-led services
that actively engaged with communities that
had been labeled ‘hard to reach’. Overall,
participants felt strongly that service users
and carers who were marginalised due
to ethnicity or social background should
be valued and involved in commissioning
decisions. Their opinions should be sought in
a variety of inclusive and accessible ways.
8.3 Process
8.3.1 Practical and emotional support
With regard to the practical and emotional
support that service users/carers would need
in order to be effective in a commissioning
role, several participants suggested that there
should be a ‘service user co-ordinator’ who
could take responsibility for supporting service
users and carers:
Somebody needs to take charge of
communicating with these service users. I
think it’s probably a paid post, and the paid
post is partly keeping in communication with
the service users, finding out how people
are, being able to arrange some form of
support if the support is not adequate. And
the other half of it may be communicating
back the commissioners’ decisions. (Ruth,
service user)
If there’s someone they can feed back
to, who’s there for them, who’s there
to support them. […] And after they’ve
attended meetings if there are any underlying
issues going on for them, there needs to
be a debriefing session, there needs to
be supervision available for them. (Sunita,
service user)
Others stressed the need to have more than
one service user represented on a panel or a
board for emotional support and to increase
the diversity of opinions:
When there’s just one of you, sometimes –
not all the time – but sometimes, the other
members who aren’t service users, they
can make you feel that you are down there.
When there’s two of you, you feel more
comfortable. And if you’re not well, or aren’t
able to make it, there’s always a back up in
that meeting. (Maya, service user)
25
I think you need diversity of views, so yes,
have more than just one service user or carer
on there. Perhaps you could have three or
four people and at least someone could be a
reserve. Because it’s good to have continuity
of the same person in meetings. (Phil, service
user)
The question regarding the number of service
users attending commissioning meetings
was also raised with regard to flexibility of
involvement. If a service user or carer felt
unwell or had other commitments, it was
seen as being important to have more than
one service user or carer on a commissioning
panel. One service user also suggested
a possible rotation system with regard to
attending meetings.
The need to receive feedback was also seen
as an important way in which service users
and carers could feel supported and valued.
Participants stated that it was very common to
be involved in a project and then hear nothing
about the outcome. This was frustrating and
disheartening:
It’s all very well promising us things, but we
do really need to get the feedback, even if it’s
a letter or an e-mail. […] ‘Cos you do all this
work and you go to all these meetings and
you never get nothing back! [Laughter] And
there’s loads of workshops I’ve been on as
well and I’ve heard nothing back. It’s terrible
really. Especially when you’ve been involved
and you’ve put your heart into it. (Maya,
service user)
Other practical issues included the need
to support people with regard to transport
so they could attend meetings and the
importance of decent refreshments which
also helped people to feel valued for their
contribution.
8.3.2 Payment
The question of payment was a significant
issue that polarised interviewees. Many felt
that payment was an essential part of being
respected and valued:
If they are equal partners then yes, you know,
not even a token gesture, it needs to be a
proper, substantial payment. Because you’re
providing lived experience. (Sunita, carer and
service user)
26
As a norm I think people should be paid to
be involved. (Phil, service user)
As part of my work in the early days, I
managed to get payments policies that were
endorsed by the NHS […] but I do feel that
the whole loop is turning round the other
way, that we’re going back to the patient
being grateful for the service they’ve received
and therefore you should be involved for free
because you’ve had a lot out of the system.
(Susan, service user)
For others, there was understandable concern
about whether payment for involvement would
affect benefits:
From choice I think people would like to be
paid, but if it’s going to affect their benefits,
or they’re putting themselves forward as
‘suitable for work’, there’s going to be issues
there. (Peter, service user)
I think definitely expenses need to be paid,
but whether a wage should be paid is a
different matter. I mean it could affect some
people’s benefits, you know, so I’m not sure.
(Marie, service user)
Participants were in agreement that at the
very least expenses should be paid on the
day so that they did not affect people’s weekly
income.
8.3.3 Skills and training
When discussing the area of skills and training
for potential ‘service user commissioners’,
participants frequently stated that
commissioning was ‘not for everyone’ and
that some people might find it dull and boring.
However, the training needs that were identified
included an understanding of:
•The new commissioning framework
•The function of various boards, panels and
steering groups. For example, the Joint
Commissioning Panel
•Terminology, acronyms and key concepts
•Financial information
Transferable skills mentioned included
assertiveness, confidence, empathy and listening
skills. Some participants also suggested having
joint training together with commissioners in
some of these areas and the possibility of service
users delivering some of the training.
8.3.4 Potential barriers and risks to involvement
One of the main themes to emerge from this
area was that of language use and the need
for clear communication. A significant number
of interviewees made statements along the
following lines:
A lot of the time you go to these meetings
and they’re coming out with a whole load of
acronyms. And people are thinking ‘I haven’t
got a clue what they’re talking about’! (Maya,
service user)
I think that as far as service users and carers
are concerned, language should be made
as simple as possible, you know. I mean,
we’re not all professors or whatever. And I
think medical terms as well should be put
into simple language, because often, the
language is over your head. And if you’ve
got a panel, everyone needs to understand
what’s being discussed. (Marie, service user)
The language that’s used in meetings
sometimes, ‘cos you go along to a meeting
and you think, ‘oh, I wonder what this is
about’, and then you think ‘I’ve no idea
what’s going on. Who are they talking about?
What is this? What money is this?’ And
someone might say ‘what do you think?’ and
you think ‘I have no idea what I think! I’ve
no idea what you’re talking about!’. (Sarah,
service user)
As such, a number of participants described
feelings of isolation and alienation when
attending some meetings. Although most
acknowledged that many of the medical
professionals and managers they had met
were friendly and helpful, it also appeared to
be the case that there were still professionals
working within the system who appeared to
use language in an exclusive way in order to
maintain power. In order to combat feelings of
isolation and stigma, participants suggested
that practitioners should communicate clearly
and dress informally. It was suggested that
having coffee before meetings might help
service users to get to know commissioners
outside of the context of the main meeting,
although it was also acknowledged that due
to busy schedules they may not have enough
time for this.
The other theme to emerge was the need for
sensitivity to cultural issues, for example by
producing information in a range of different
languages, not holding meetings on Fridays
for religious reasons, and the need for further
training and discussion with regard to the way
in which different cultural groups perceive and
experience mental health:
I would like to see some form of training
or discussion around how different cultural
groups actually see mental health. […] To
actually sit down and talk about, what is
mental health, to deal with issues of stigma,
to deal with issues of denial, to deal with
what people are actually feeling and how they
interpret what they’re feeling, as opposed to
what we the white Europeans tend to take
for granted. And you know, that could be
a starting point to recruiting people on to
panels. Because without doing that I think
you’re going to have a load of people who
don’t know what the hell you’re talking about.
You’ll have some people who have been
involved in the mental health service for a
long time and who will have absorbed the
values, and they’ll probably come on, but
you’ll be missing out on the people who are
not in that situation. (Ruth, service user)
8.4 Impact
8.4.1 Co-production and joint accountability
Participants were asked how it would be
possible to evaluate the extent to which service
users and carers were not just involved in,
but taking joint ownership of commissioning
services. In response, many interviewees
questioned the notion of ‘co-production’ and
were very cautious about the idea of joint
accountability. Some felt that many changes
were required before it could be achieved.
I mean that’s a major cultural shift isn’t it
really? […] It sounds like blue sky thinking to
me. The idea of a service user commissioner
having equal status. I’m not suggesting
we couldn’t go that way… but… Yeah, I
mean, if they are paid the same wage as the
non-service user commissioner! Whether
someone would want to take on that
responsibility, I don’t know really. (Phil, service
user)
I think it is possible, but I doubt it is possible
right away. […] I think it’s going to take quite
a lot of shifting. I think there’s a long way to
go. (Claire, service user)
27
It was felt by many interviewees that there
was a continued power imbalance between
clinicians and service users and that a
paradigm shift was required before coproduction would be possible. Although
the first service user quoted laughed as he
suggested that equal status should mean
equal pay, this point was also raised by other
participants who stated that service users
and carers should only be held financially
accountable as part of a specified paid job role.
Some participants felt that service users should
not be held financially accountable for services
commissioned as this would compromise their
independence. Others expressed more of a
desire to co-commission services, but felt that
the managers and practitioners ‘holding the
purse strings’ would always have the power:
The people at the top will make the decisions
they want to make, whether you agree or not.
Unfortunately. That’s pessimistic, but… yeah.
(Sarah, service user)
I suppose there’s that underlying thing about
power, in that, yes, we can say what we like,
but at the end of the day, they are going to
make those decisions. The people who’ve
got the purse strings. (Phil, service user)
Although many service users appeared to
welcome the idea of having ‘equal status’ with
‘professional’ commissioners, it appeared
that many were also wary of this notion and
believed that issues of power and financial
accountability would have to be addressed
further before commissioning could be ‘coproduced’.
8.4.2 Evaluating the impact of service user and
carer involvement
When answering questions about evaluation,
many stated the need for formal research
studies, comprising interviews, questionnaires,
evaluation sheets from meetings and regular
feedback from service users. Several
mentioned that service users should also
be involved in the evaluation process as
independent researchers. When discussing the
impact that service users might have on the
commissioning process, a significant number
of participants gave examples relating to the
closure of day centres in Birmingham. There
was a great deal of anger in relation to this
issue and a strong feeling that if service users
had been more involved in the consultation
28
process, and their opinions had been valued,
different conclusions may have been drawn.
For the majority of interviewees, the most
crucial aspect to consider when measuring
the impact of service user involvement was
the extent to which the opinions of service
users/carers were properly heard and their
suggestions taken into consideration:
If a service user has suggested this, or
suggested that, and then you find that
everything they say has been blocked… you
can see then, they’re not really being heard.
[…] Because at the end of the day, that’s
what we want isn’t it? To be heard. (Maya,
service user)
Make sure that service users’ views are acted
upon. They’re not just listened to but they’re
actually heard. […] The services should
reflect the needs of service users and carers.
They’d be more… services would be more
needs-led. Because their voice is actually
listened to and heard, services would reflect
what they actually need. (Sunita, carer and
service user)
The interviewees who participated in this
review were passionate advocates of service
user and carer involvement in mental health
commissioning. Some were wary about the
practicalities of values-based commissioning
and the possibilities of co-production prior to
a significant cultural shift with regard to power
relations. However, all were keen for service
users and carers to be respected and have
the opportunity to influence mental health
commissioning at every stage in the process.
9. Recommendations
This report makes the following recommendations:
∂Service users should be placed at the centre
of the commissioning process. Clinical
Commissioning Groups should set up a
VbC infrastructure where possible and begin
to actively collaborate with service users
as equal partners. There should also be a
definite service user and carer presence
at all levels of decision-making and panels
should comprise at least three people who
have lived experience of mental ill health.
∂The concept of ‘commissioning’ needs to
be demystified and explained with greater
clarity. Strategies need to be developed
(for example, guidance documents
using ‘plain English’, workshops etc.)
that enable people to increase their
understanding of different aspects of
commissioning and the new landscape of
clinician-led commissioning. ‘Professional
commissioners’ need to be sensitive to
issues of language, power and cultural
diversity. They should communicate clearly,
explain acronyms and concepts, and not
make assumptions with regard to levels of
understanding. More specifically, awareness
needs to be raised with regard to what
‘values-based commissioning’ actually is.
It should be differentiated from other forms
of commissioning through its emphasis on
service user leadership, power sharing and
co-production of services.
∂Further research is required in order to
address the ongoing tensions between
‘evidence-based’ and ‘values-based’
approaches, particularly within the changing
landscape of the NHS. Insights are needed
from a variety of different theoretical
approaches in order to inform policy-making
and practice more effectively. Moreover,
further work is needed that assesses the
variety of emerging approaches to service
user involvement in commissioning and
suggests how these approaches can
complement and strengthen each other.
∂More extensive mapping needs to take
place in the West Midlands area with regard
to existing service user involvement in
commissioning and how this will be affected
by the new structures which came into being
in April 2013. There is ongoing uncertainty
with regard to how service users will be
able to influence commissioning decisions
within the new healthcare landscape and
organisations such as NSUN need to
continue to develop strategies to address
these issues.
∂The categories of ‘service user’ and ‘carer’
should not be conflated. There needs to be
an understanding of the possible tensions
between these groups and strategies
developed for managing their different
needs.
∂There is potential to create a role for a ‘Service
User Co-ordinator’ who can provide practical
and emotional support for service user
commissioners, identify training needs, and
ensure that commissioners and service users
are communicating effectively with each other.
∂Service users should be paid for their
involvement. However there are issues
surrounding the extent to which payment
may affect benefit claimants. If service users
are not paid for their contributions, they
should at least expect to be reimbursed
for travel expenses on the day and offered
refreshments.
∂There needs to be a greater diversity of
service users who are involved in mental
health commissioning. Existing service
users should be involved in ‘outreach’ work,
talking to people on hospital wards and in
community groups about commissioning.
Training programmes need to be developed
with people who are marginalised and
whose voices are seldom heard. Leadership
training also needs to be developed for
groups/individuals who are already involved
as ‘service user commissioners’.
10. Concluding Comments
This document has provided a review of
values-based commissioning in the West
Midlands area through an evaluation of the
Mental Health Commissioning Modelling
Group and consultations with service users
and carers. The report has discussed the
concept of values-based commissioning, set
out principles of good practice with regard
to its delivery, and identified areas for further
development. The findings of the review have
identified that although a considerable amount
of service user consultation currently takes
place, there continues to be comparatively
little leadership, or joint decision-making
in relation to service design and delivery.
Further consideration is needed with regard
to how values-based commissioning can be
successfully put into practice. More specifically,
there needs to be:
•An increased awareness of the concept of
‘values-based commissioning’.
•A greater understanding of how service
users will be involved in the new structures of
clinician-led commissioning.
•A culture shift in attitude and approach,
whereby ‘professional commissioners’ have
an increased sensitivity to issues of language
29
and power, and are prepared to share the
label of ‘expert’ with service users.
•Further research into the tensions underlying
evidence-based and values-based practice.
•Further empirical work into the practicalities
of co-production and service user
involvement in mental health commissioning.
•The development of creative and inclusive
ways to engage with service users who are
marginalised.
•The development of leadership training
programmes for service users who are
already involved in the commissioning
process.
•The creation of VbC infrastructures by CCGs
in order for ‘professional commissioners’
to begin to actively collaborate with service
users as equal partners.
The recommendations from this review will be
incorporated into a wider guidance document
on values-based commissioning for the
national Joint Commissioning Panel for Mental
Health.
Appendix A
Interview Guide
Purpose
What is your current role / extent of your
involvement?
Have you been on (or involved in) any courses
about NHS services or management?
What do you already know about ‘values
based commissioning? (Interviewees will have
received an overview document of ‘Values
Based Commissioning’ prior to interview).
What do you think about the term ‘values
based commissioning’?
Why do you think service users and carers
should be involved in the commissioning
process? What difference would they make?
Presence
What kind of role (or roles) do you think service
users and carers need to have in order to be
fully involved in the commissioning of mental
health services? (eg. co-workers, panel
members, ambassadors)
What activities or ways of being involved might
attract a more diverse range of service users
and carers? (Should there be different levels or
types of involvement?)
30
Process
What administrative, supervisory and emotional
support would service users/carers need in
order to be effective in their role? (eg. payment
of fees and expenses, more than one service
user/carer on a panel)
What kind of skills/training would be needed?
How should service users/carers receive
feedback about the results of their
involvement?
What kind of flexibility would be needed in
order for service users/carers to move in and
out of involvement when they wish to or need
to? (eg. if there was an employment contract)
What other potential barriers or risks to
involvement might need to be addressed?
(eg. communication, power relations, cultural
issues).
Impact
How will be know (or evaluate) the extent to
which service users and carers are:
•Not just involved in, but taking joint
ownership of commissioning services?
•Able to make the commissioning process
more accessible and inclusive to other
services and local groups? (eg. through
physical presence, NSUN events etc.)
•Influencing the commissioning of mental
health services? (developments designed &
led by service users)
•Having an impact on how commissioning
structures operate? (eg. is the language
accessible and inclusive, are service users
involved in training of commissioners etc).
31
Appendix B
Information Sheet
Consultation on Service User/
Carer Leadership in Valuesbased Commissioning
What is Values-based Commissioning?
Values-based Commissioning (VbC) is an
approach to commissioning which draws
on the principles of Values-based Practice
(VbP). VbP has been developed as the ‘values
counterpart’ of ‘evidence-based practice’. It
seeks to empower service users to have more
direct control over their treatment, the services
they access and choice about their care. In
practice, this means that the service user
and/or carer become the first point of call for
information about decisions relating to health
care and treatment.
In a commissioning environment, the principles
of VbP are applied to the assessment and
provision of mental health services. Thus,
Values-based Commissioning will mean that
local investment decisions will be informed by
the values held by recipients and providers, as
service users and carers actively participate
in, and influence decisions relating to, the
‘commissioning’ of mental health services.
Ultimately, the aim is for commissioning
strategy and direction to be ‘co-produced’ by
service users, carers, clinicians and managers.
But if VbC is to be more than a rhetorical
gesture, what needs to happen in order to
realise this goal?
The Consultation
As part of the evaluation of the West Midlands
Mental Health Commissioning Modelling
Group (MH-CMG), the National Survivor
User Network (NSUN) and NHS West
Midlands are considering the practicalities
of VbC, particularly with regard to how
mental health service users and carers can
actively participate in, and ultimately take joint
ownership of, mental health commissioning. To
that end, we aim:
•To speak with service users and carers/ GP
Clinical commissioners, mental health leads
and Joint Commissioners to find out how
values-based commissioning can effectively
work in practice.
32
•To develop a model of best practice for VbC.
•To provide recommendations to the Joint
Commissioning Panel (JCP) in order to feed
into its guidance on VbC.
More specifically we want to use the
information from the consultation to answer the
following questions:
•How can service users and carers be
involved in the commissioning process?
•What kind of role (or roles) should service
users/carers have in order to be fully involved
in the commissioning of mental health
services?
•What kind of training and support would be
needed?
•What are the barriers to involvement that
need to be addressed?
•How will we know if service users and
carers are making an active difference to the
commissioning process?
To help us answer these questions, we would
like to talk to as many relevant individuals and
groups as possible. We would also like to
interview people face-to-face, or by telephone.
Please contact Emma or Liz below if you would
like to participate in one of these interviews.
Criteria for consultation
The consultation follows the Government Code of
Practice on consultation. In particular we aim to:
•formally consult at a stage where there is
scope to influence the policy outcome;
•consult for at least 12 weeks and consider
longer timescales where feasible and
sensible;
•be clear about the consultation’s process
in the consultation documents, what is
being proposed, the scope to influence,
and the expected costs and benefits of the
proposals;
•ensure that the consultation exercise is
designed to be accessible to, and clearly
targeted at, those people it is intended to
reach;
•keep the burden of consultation to a minimum
to ensure consultations are effective and to
obtain consultees’ buy in to the process;
•Analyse the responses carefully and give
clear feedback to participants following the
consultation;
•ensure officials running consultations are
guided in how to run an effective consultation
exercise and share what they learn from the
experience.
Your responses will be used in accordance
with the Data Protection Act and only as part
of this consultation process. When the report
is written all names will be changed and any
information that could identify you will be
removed from the final report. A copy of the
report on the consultation will be available on
request from Emma or Liz below.
This consultation opens on 3rd September
2012. It will close on 23rd November 2012.
This is the 12 week period required.
Please respond to the consultation through the
following link
http://www.surveymonkey.com/s/T6K8XTY
either individually or on behalf of a group you
are a member of.
Please complete your response by 5pm Friday
23rd November.
33
Appendix C
2. Addictions
3. Autism
•All addictions can be considered as a group
because they all behave the same way and
have similar antecedents.
•The Autism Act 2009 stresses the
importance of diagnosis as a means by
which people with ASD (Autistic Spectrum
Disorder) can access services.
Compendium
What does good Values-based 1. Acute Mental Health
Commissioning look like?
Care
This compendium has been collated from
presentations that formed the basis of
discussions within the West Midlands Mental
Health Commissioning Modelling Group (WMMH-CMG). It contains recommendations for
effective values-based commissioning across
the major areas of provision and prevention
within mental health and learning disabilities.
•Patients and carers need to be actively
involved in decision-making as part of multidisciplinary teams.
•VbC would reduce the medical emphasis in
acute care. Whilst valuing drug treatments,
many solutions are social and the focus
needs to shift away from prescribing.
•Alternatives to compulsory treatment need to
be explored through the use of personal care
budgets.
•Greater emphasis needs to be placed on
crisis resolution and home treatment, in order
to reduce admissions.
•Alternatives to acute care need to work
humanely and safely.
•There needs to be a challenge to current
opinion that ‘proper mental healthcare’ is
done in specialist trusts and the services
provided by the third sector are ‘icing on the
cake’.
•There is a need to identify where statutory
services end and personally commissioned
ones start, ie. what people could be
expected to purchase and what should be
included as standard and free at point of
contact.
34
•Most addictions start before the age of 25.
Therefore, services need to concentrate on
their engagement with young people through
early interventions (such as screening) within
GP surgeries and A&E. There may also be
scope to address addictions, particularly
alcohol and tobacco within educational
settings.
•Each GP practice in the CCG should
have access to a drug and alcohol worker
capable of assessing and overseeing the
management of substance misuse in the
community with other services for people
with addictions.
•The current strategy for dual diagnosis needs
to be reassessed. It may be the case that
dual diagnosis services should be located
with addictions rather than general mental
health services because the former have
skills in both general mental health and
addiction while the latter may not. If dual
diagnosis services remain in mainstream
mental health services (such as the
Community Mental Health Team, CMHT) then
further training and development in the area
of addictions, particularly alcohol, should be
implemented to increase the skills of CMHT
staff in managing dual diagnosis.
•Awareness needs to be raised amongst
families (who can react more appropriately),
schools (who can introduce children with
suspected ASD to assessment processes),
healthcare professionals including practice
nurses, health visitors and GPs (who
consequently do not misinterpret behavioural
anomalies as signs of mental illness), social
care/DWP staff and the criminal justice
system.
•Child screening for ASD could be introduced
in specific settings such as well-child clinics
and immunisation visits carried out by Health
Visitors and nursing staff.
•Practice registers can assist in terms of
enabling primary care staff to know when
they are dealing with someone who has ASD
and offer reasonable adjustments.
•Alcohol abuse impacts on absenteeism
so workplaces could be targeted where
employers would be incentivised to act.
•Improve training and education for primary
and secondary care services on adult
diagnosis of ASD. A diagnosis of ASD as
an adult can be beneficial especially for
individuals in the workplace, due to the
protection of people with ASD under the
Equality Act 2010. Employers and educational
institutions are then obliged to put ‘reasonable
adjustments’ into place to support people with
ASD. Adults with a diagnosis may also find
it easier to receive help from social services
(although this is not essential).
•A ‘one stop shop’ for accessing range of
services would be the best model from the
service user perspective.
•There is a need to improve primary care and
secondary care working with social services
to benefit people diagnosed with ASD.
•The JCP will consider models of holistic
care for addictions and relate these to an
outcomes framework.
•There is a need to improve the transition from
child to adult services for those with ASD.
•Although autism confers increased
vulnerability to mental illness, most people
with autism are not mentally ill. The focus of
services should be around giving support
for employment, accommodation, leisure
etc. Primary care and community services’
knowledge of reasonable adjustments needs
to be developed to allow timely referrals to
social services or third sector services for
additional support.
35
Autism – continued
4. Clinical Communications
in mental health settings
5. Compulsory Treatment
6. Dementia
•Although carers of people with ASD often
prefer to access services within a mental
health setting as opposed to a learning
disabilities setting, there is a stigma attached
to both and there is therefore a robust
argument to take assessment functions
out of both settings and into a primary care
setting (ie. GP surgeries).
•Information sharing is often easy to agree
on a local basis, but barriers are often
encountered at regional/national level.
Strategies for overcoming these barriers
need to be explored in more detail.
•Bearing in mind the current legal framework,
compulsory psychiatry and treatment should
be minimized wherever possible.
•Early diagnosis is a priority and people with
early indicators should have access to a
specialist service such as a memory clinic for
support and advice.
•It is vital that carers are involved in the
commissioning of mental health services.
They need to be consulted for information
and made aware of decisions that may affect
them. The enthusiasm of carers needs to
be harnessed and their input may help to
challenge current ideas and practices.
•Carers need to be regarded as ‘coproducers of services’ alongside service
users. Partnership working between carers,
commissioners and providers should be
encouraged. Carers in Partnership (CiP)
has developed a resource pack ‘Effective
Engagement of Carers’ that facilitates
communication between carers and
managers (http://www.carersinpartnership.
org/html/carcomi.htm).
•With regard to confidentiality more use needs
to be made of the PCPsych’s document
‘Partners in Care’ (http://www.rcpsych.ac.uk/
about/campaigns/partnersincarecampaign.
aspx).
•Commissioners need systems to share best
practice and commission practical support
for carers through networks such as Mood
Master.
•The health and wellbeing of carers should be
an outcome of a successful commissioning
strategy for integrated mental health and
social care services.
36
•Patient confidentiality clearly needs to be
respected and this is particularly so in
mental health where stigma can lead to
disadvantages.
•Tiers of confidentiality could be developed.
•Clear distinctions need to be made between
using data for clinical purposes and using
data for audit/research purposes.
•Healthspace – www.healthspace.nhs.uk is
a proactive and patient-led way of sharing
information. Some service users may not
be I.T literate and such initiatives may
exaggerate social inequalities. Some of these
issues can be mitigated by developments
such as Easyhealth http://www.easyhealth.
org.uk/ a website specifically constructed
around the needs of people with learning
disabilities.
•Another potential method of improving
communication and enhancing information
sharing is the introduction of a patient held
health record or personal health plan. This
could be used in conjunction with improved
access to GP held patient records. Either
electronic or hand held records may become
more important with the use of personal
health budgets which may introduce an even
wider range of organisations involved in one
individual’s care.
•Communications need to be strengthened
between local authority, education and
primary care.
•It is vital to listen to people’s choices and
preferences around the use of compulsory
treatment.
•From a VbC viewpoint there are opportunities
to offer a choice of treatments and
medications to help build trust between
clinical teams and people at risk of
compulsory treatment.
•There should be a focus on continuity of care
between hospital and home treatment.
•There is a need for the development of
further measures of ‘patient experience’
around personalised care and service
quality. This will help to give a greater clinical
commissioning focus on this area and will
influence organisation and staff behaviour.
•The increased use of personal care budgets
provide an opportunity to support people to
take charge of making decisions about how
their care is delivered, and by whom.
•It is important to identify where lower levels
of compulsory treatment exist nationally
and whether the success factors can be
replicated elsewhere.
•Advance crisis plans should be developed
with patients in combination with their
keyworker and primary care.
•Information should be aggregated with
regard to how service needs can inform
commissioning of the correct levels of
advocacy, ‘respite’ or other carer-support
services.
•There should be greater sharing across
primary and secondary care and social
care boundaries regarding any aftercare
arrangements particularly if a patient is
discharged under a S117.
•There needs to be a reduction in unplanned
admissions through better management of
dementia and related medical co-morbidity in
primary care.
•More mental health liaison nurses could
support people at risk of admission and
when in hospital to reduce length of stay.
•Particularly in nursing and care homes,
increased access to behavioural and nondrug therapies is required in order to reduce
antipsychotic prescribing.
•Screening is not currently recommended
for the general population but healthcare
professionals should be aware of the
increased risk of dementia in people with
Down’s syndrome and other learning
disabilities, after a stroke, and in Parkinson’s
disease with regards to screening.
•Public awareness and education is also
important. There is a need to develop an
attitude towards dementia that focuses on
reasonable adjustments and integration of
the individual in society.
•Although the concept of early diagnosis of
dementia may have a potentially stigmatizing
effect, people may be empowered through
early diagnosis and disease control and have
better access to planning tools.
•It is important to support carers to maintain
their own health and wellbeing.
•Commissioning also needs to promote
self-care and self-management through
supported decision-making and advocacy.
•The Dementia Commissioning Pack was
launched by the Department of Health
in July 2011. It sets out guidance in this
area (http://dementia.dh.gov.uk/dementiacommissioning-pack-launched/).
37
7. Equality and Mental
Health
•People from BME communities are more
likely to be subject to social disadvantage
and marginalization. The experience of
racism can further predispose members of
BME communities to mental illness.
•Some BME communities continue to be
over-represented in the mental health system
in terms of admission into in-patient care,
being detained under a section the Mental
Health Act, diagnosis of schizophrenia etc.
Research and subsequent recommendations
are required to rectify this.
•Members of BME communities who hold
alternative views of health and wellbeing due
to spiritual or cultural beliefs may experience
difficulty in approaching services due to fear
or distrust. Therefore reasonable adjustments
need to be made to working practices. For
example, by working with faith leaders to
hold assessments in mosques, churches
or community centres. There is also a need
for more research in this area. For example,
very little literature exists with regard to the
experiences of mental health services of
older Afro-Caribbean people with late life
schizophrenia and their carers.
•There are marked variations in service
provision within local authorities that need
to be challenged. The new Health and
Wellbeing Boards should begin to tackle this
issue.
•There should be greater use of contractual
incentives such as CQUIN schemes to focus
attention on race equality.
•There needs to be greater transparency
of data around race equality issues in
commissioned services.
•BME groups continue to be underrepresented within service user involvement
activities. VbC will aim to identify barriers
to participation and improve representation
from BME communities at all levels of
commissioning.
•The ethnic mix of multi-disciplinary teams
should reflect that of the population served
(whilst guarding against tokenism).
planning which is aligned with commissioning
plans.
•The Equality Act 2010 identifies categories
of potentially vulnerable groups with regard
to age, disability, gender reassignment, race,
religion or belief, sex, sexual orientation,
marriage and civil partnership, pregnancy
and maternity. Ethnic minorities, migrants,
disabled people, the homeless, those
struggling with substance abuse, isolated
elderly people and children can all face
difficulties (eg. poverty, unemployment,
poor housing) that can lead to further social
exclusion. Therefore, commissioning should
ensure that interconnecting factors are taken
into consideration with regard to gaining
access to services.
8. Learning Disabilities
9. Liaison Psychiatry
•Acute care staff and staff in primary care and
community settings need to receive training
on how to provide basic care to people
with learning disabilities. This needs to be
standardized and quality assured.
•Liaison Psychiatry is the branch of psychiatry
that specialises in the overlap between
physical and psychological health in different
settings such as A&E and general hospital in
and out patient settings.
•Training for primary care, community services
and secondary care is important especially
around the implementation of reasonable
adjustments and implementation of the
Equality Act, 2010. Under the Equality Act
(2010) all healthcare providers have a legal
duty to make reasonable adjustments for
people with LD and ASD.
•A holistic view is necessary and a wider
change is required within the service to
address both physical and mental health
needs. It should not just be the responsibility
of liaison psychiatry and mental health
commissioners.
•It is important to look past the LD (‘diagnostic
overlay’) when assessing someone for
mental health problems or behaviour that is
considered to be challenging.
•Commissioning for the transition between
child and adult (LD or specialist LD mental
health) services is currently very poor and
needs to be improved.
•There needs to be a greater focus on the
recognition of mental health problems.
Access to mainstream MH services (including
IAPT) should be offered to people with LD.
•A ‘whole system’ approach will ensure
consistency for the patient.
•Some patients suffer from communication
gaps in the system. Therefore communication
between services needs to be improved.
•Liaison should be focused on the system
as much as it is on specific patients. A
commissioning strategy for liaison should
therefore involve using different components
of programme budgets, eg. to support
training and development for staff in all parts
of the system.
•The network of commissioners involved in
learning disabilities and mental health needs
to be strengthened. This will bring greater
cohesion to the work undertaken by Local
Authorities, commissioners for children/young
people and commissioners for adults, such
that greater consistency, standardization and
integration is achieved.
•People with learning disabilities need to
have their views heard at all stages of the
commissioning cycle in order to enable
services to reflect the diverse needs of these
service users. Carer input is also vital.
•Clinical Commissioning Groups could
produce a set of key principles for
commissioning services for people with
learning disabilities, collating examples of
good practice, which could then be shared
and developed, both regionally and nationally,
with endorsement from the relevant Health
and Wellbeing Boards.
•BME groups should be involved in the
development of strategic mental health
38
39
10. Long term conditions
•People with one long-term condition are
two to three times more likely to develop
depression than the rest of the population.
People with three or more conditions are
seven times more likely to have depression.
Having a mental health problem increases
the risk of physical ill health. Co-morbid
depression doubles the risk of coronary
heart disease in adults and increases the
risk of mortality by 50 per cent. People with
mental health problems have higher rates
of respiratory, cardiovascular and infectious
disease, and of obesity, abnormal lipid levels
and diabetes.
•Costs to the health care system are
also significant – by interacting with and
exacerbating physical illness, co-morbid
mental health problems raise total health care
costs by at least 45 per cent for each person
with a long-term condition and co-morbid
mental health problem. People with longterm conditions use disproportionately more
primary and secondary care services. This
pattern will increase over time with an ageing
population. Over 30 per cent of all people say
that they suffer from a long-term condition.
•Care for large numbers of people with
long-term conditions could be improved
by better integrating mental health
support with primary care and chronic
disease management programmes, with
closer working between mental health
specialists and other professionals. Disease
management programmes should offer an
extended Multidisciplinary Team approach.
•Collaborative care arrangements between
primary care and mental health specialists
can improve outcomes with no or limited
additional net costs.
11.Medically unexplained
symptoms (MUS)
physical illness could play an important
role in helping the NHS to meet the Quality,
Innovation, Productivity and Prevention
(QIPP) challenge. This will require the removal
of policy barriers to integration, for example,
through redesign of payment mechanisms.
•Achieving system quality and productivity
gains requires service redesign across
primary/secondary/mental health services,
with associated workforce development and
commissioning pathway realignment. For
quality and productivity gains to be achieved,
pathway components need to be developed
and commissioned in a planned way that
ensures the right treatment is available at
the right time and in the right setting for
individuals.
•Commissioners need to encourage Mental
Health Trusts to develop additional physical
healthcare quality measures e.g. smoking
cessation advice.
•People with MUS are frequently seen in both
primary care and secondary care services.
A small proportion of people develop
persistent, potentially disabling symptoms,
which have high personal costs in terms of
distress and loss of function, and also are
expensive to healthcare and society.
•An eMDT (extended multi-disciplinary
team) approach can help improve patient’s
confidence and empower them to use
self-help methods. eMDT should be
commissioned to include employment
support, occupational therapy, and work
retention programmes
•Up to 20 per cent of new primary care
GP appointments are for people whose
symptoms are eventually described as
‘medically unexplained.’ In secondary care,
a number of studies in both the UK and
the United States have shown that up to
50 per cent of sequential new attenders at
outpatient services have MUS.
•In secondary care, commissioners should
focus on specialist services such as pain
or fatigue clinics and liaison teams should
provide specialist multidisciplinary care for
patients presenting with more complex
MUS. The approach is multidisciplinary and
biopsychosocial, using approaches that are
evidence-based.
•The Forum for Mental Health in Primary
Care summarises potential approaches to
managing people with MUS. In Primary Care,
the consultation is the key relationship, which
can impact on MUS. Resources should
be focusing on the education of front line
primary care staff in delivering consultations
in a style that can benefit people with
MUS. Training may focus on improved
communication, greater patient involvement,
better provision of information and
explanations, and using different language
and cultural models where necessary.
•Commissioners should focus on developing
IAPT (Improving Access to Psychological
Therapies) services, which can offer a range
of approaches to manage MUS. Longer term
CBT (cognitive behavioural therapy) has been
found to be a cost effective and beneficial
intervention for tackling somatoform
conditions (mental conditions that suggest
physical illness, but cannot be explained fully
by a medical condition) and their underlying
psychological causes.
•Innovative forms of liaison psychiatry
demonstrate that providing better support for
co-morbid mental health needs can reduce
physical health care costs in acute hospitals.
•CCGs should prioritise integrating mental and
physical health care more closely as a key
part of their strategies to improve quality and
productivity in health care.
•Improved support for the emotional,
behavioural and mental health aspects of
40
41
12. Offender Health
•Offenders are often multiply disadvantaged
and subject to substantial inequality and
marginalization. Therefore it is extremely
important to meet their health and social care
needs.
•Prison populations have higher rates
of mental illness, learning disabilities
and substance misuse than the general
population.
•Prison populations should be assessed for
mental illness and those that need treatment
whilst in custody should receive it in a similar
way to how they would outside prison.
There is also a need to change the prison
environment to make it more therapeutic as
this can improve outcomes.
•There needs to be integration between frontline services: the police, public protection
bodies, Community Forensic Teams, Clinical
Commissioning Groups, and Health and
Wellbeing Boards.
•Early intervention is to be encouraged.
Forensic Liaison and Assessment Teams
should link specialist services to community
mental health services to assess the causes
of criminal behaviour (including social and
environment as well as psychological factors)
and prevent appearances in court.
•At least one GP practice in the Clinical
Commissioning Group area should be able
to manage the specific needs of people who
have been excluded from other practice
lists, people recently released from prison
and those who are subject to community
sentences.
•It is essential to involve offenders, their
relatives and carers in the planning and
delivery of services. Active participation
is likely to stimulate responsibility and aid
rehabilitation.
•Relatives and carers should be enabled to
support each other and challenge stigma and
discrimination.
42
•Outcome frameworks should measure clinical
outcomes and crucially people’s experience
of services, including the impact on their
wider wellbeing and ‘resilience’ around
physical health, work, and social/family
relationships.
•Outcome measures from a clinical/values
based commissioning perspective could be
developed in the following areas: offender
health; substance misuse and the health
needs of people with learning disabilities.
•Outcome frameworks can be developed
to support VbC. For example, Patient
relevant outcome measures such as patient
experience and quality of services that
measure the difference made to people’s
lives rather than traditional targets such as
the cost and volume of service delivered.
•The local experience in Birmingham to setting
strategic outcomes, based on the national
mental health outcomes strategy, was
identified as a positive current example of
joining up Joint Strategic Needs Assessment
priorities with the outcomes from consultation
with local communities.
14.Peer Mentorship,
User Experience and
Developing Networks
15. Personality disorders
•Patient expertise and peer mentorship are
now formally recognised components of
‘evidence-based’ care, having demonstrated
successful outcomes for individuals, carers,
and multidisciplinary teams.
•Personality disorders are complex and
common conditions (affecting between 5%
and 13% of people living in the community).
People with PD may present with a range of
physical, mental health and social problems
such as substance misuse, depression
and suicide risk, housing problems or longstanding interpersonal problems. Some
also commit offences and are periodically
imprisoned. A small number present a risk to
other people and a few, serious danger. The
general impact of PD on individuals, families
and society is significant.
•Benefits for people can include: reduced
hospitalization; increased quality of life; better
physical health and increased employment.
•There can also be benefits with regard
to reducing stigma and impacting on the
(negative) way some professionals can, at
times, think or act.
•In order for more people with histories of
mental illness to become employed (either
as experts by experience or part of the
professional establishment) a culture change
is required. ‘Professional’ commissioners
need to consider their approach and style to
enable service user and carer leadership (by
behaving in a respectful manner, arranging
meetings at times and in places that are
convenient for service users, using plain
English etc.).
•This approach should be part of
commissioning strategy in all aspects
of health and social care and senior
commissioners should take the lead in
promoting these values.
•People with PD are often ‘complex’ and
have other conditions that overlap with other
mental health areas e.g. substance misuse,
addictions. Because PD is associated
with complex need, many commissioners
and agencies will be involved in providing
services. While NHS commissioners have
particular responsibilities and lead roles, for
some groups of people with PD, improved
health and well-being can only be delivered
through partnerships and coalitions with
other agencies. Commissioners should focus
on integration across health pathways and
collaborate with other commissioners for;
local and specialised mental health services,
substance misuse services, child and
adolescent mental health services (CAMHS),
offender health services and primary care
services. This will ensure that PD is effectively
addressed in general services for a number
of client groups.
•Commissioners should be aware that
dedicated PD services are the most effective
but mainstream mental health services also
have a vital part to play. For instance, mental
health services should provide support to
people with PD through long-term therapy
programmes in line with NICE guidelines.
•Underlying personality disorders or difficulties
may go unrecognised by agencies,
practitioners and commissioners. In
mental health services, there has been a
persistent belief that PD exists in isolation
and separately from mental illness. We need
to understand PD as intricately interwoven
with mental ill health and complex needs.
Best practice has shown that it is an area
that could be well supported by effective
43
Personality disorders – continued
commissioning in specifying the need for staff
to be appropriately trained and supported to
work with people with PD. Commissioners
should focus resources on training and
development of appropriate staff at key
points in the health and social care systems
with recognised roles in relation to PD.
•Cognitive analytical therapy has shown to
be beneficial. However this is a long-term
therapy so commissioners will need to focus
on developing existing IAPT services so they
can offer this treatment.
•Commissioners may need to be innovative
in their approach to commissioning services
for PD. Not all clients are able, or choose,
to engage with psychological services.
Psychotherapy consultation should be
offered in-house (ie in the GP surgery).
Psychology staff with more specialised skills
may need to offer virtual clinics and advice to
guide staff working with these patients.
•The relationship between an individual
with PD and service providers is important
and described as a therapeutic alliance.
This alliance can also be important when
developing services and care pathways
and involving service users. The therapeutic
alliance approach can be facilitated by
practice that develops and promotes selfmanagement and control; for example,
through service user management of the
Care Programme Approach (CPA) process,
and other types of planning and goal setting.
•Commissioners should direct resources
which offer support in a range of ways to
allow for different choices. For example, by
i) providing access to alternative therapies
and individual as well as group work ii) have
arrangements to ensure that PD service
users’ views are sought regularly and are part
of the decision-making process iii) involve PD
service users in shaping and operating the
day-to-day service and involve service users
in shaping the whole service. For example,
through membership of steering committees
and boards, in research and evaluation,
in recruiting and training new staff and in
developing and extending services.
consultation is offered in-house and to
primary care teams, often via virtual clinics
to guide staff working with this group of
patients. Specific CAT (Cognitive Analytic
Therapy) principles, such as ‘contextual
reformulation’, are used within the diabetes
multidisciplinary team to enhance their
understanding and management of complex
patients, particularly those with borderline
personality disorder.
16. Prevalence Data
17.Risk Stratification
and Primary Prevention
•Prevalence data provides information on the
occurrence of a disease recorded against the
size of population at risk.
•Risk Stratification is the range of activities
used to determine a person’s risk for
developing a particularly condition and the
need for preventive intervention.
•Information on health needs analysed in
this way can support CCGs to take an
increasingly sophisticated approach to
describing the services required to meet
population needs, i.e. through ‘horizon
scanning’ - using data to change how
services are specified and purchased from
providers, and to target where shifts in
service models and patterns of current
investment are needed. This would be
beneficial in planning early intervention and
preventative services.
•CCGs need to get better at using data from
other organisations such as voluntary sector
organisations and local authorities.
•Together with an understanding of which
social factors are affecting the mental health
and wellbeing of a population, a public
mental health strategy could be developed by
Clinical Commissioning Groups and Health
and Wellbeing Boards.
•Public health information and data can
be brought together with technical risk
stratification tools to profile the needs of
populations.
•With regard to early intervention, there may
be an opportunity to make a significant
difference by working with children under 5
and their families, carers (with depression as
a key issue), and people with dementia.
•Once at-risk populations are identified
and prioritised, the approach needs to
be endorsed and enacted by grass-roots
community leaders, otherwise it will be
perceived as ‘top-down’ and patronizing and
uptake will be poor.
•Psychological resilience in at risk individuals
and populations can be measured using
indicators such as the Warwick-Edinburgh
Mental Well Being Scale (WEMWBS), and
societal and public service indicators such as
employment and further education statistics,
incidence and prevalence data.
•Health and Wellbeing Boards need to be
aware of: what is already available in terms
of community facilities and activities; what
groups of people are likely to be at risk
of certain disorders; what the important
messages are that need to be effectively
conveyed to these groups.
•Not all clients are able, or choose, to engage
with psychological services. Psychotherapy
44
45
18. Young People
References
•Most adult mental illness begins in early
adolescence. Therefore, it is important to
focus on early intervention and transition from
child to adult mental health services at age 16.
Adams, J. R. (2006) ‘Shared Decision-Making
and Evidence-Based Practice’, Community
Mental health Journal, 42(1): 87-105.
•Social services tend to take the lead in child
services whereas mental health teams tend
to lead on adult services. There would be
a need to integrate these two sources of
commissioning to achieve continuity of care.
•Current service configuration in adult services
is not working, or set up to work, from young
people’s point of view.
•Services should be integrated with young
people’s lives (rather than the disconnect
that is often perceived by people accessing
services between adult mental health
services and their everyday lives).
•Social networking, projects, volunteering,
education and training all assist in enhancing
psychological resilience and therefore can
be legitimate components of a healthcare
package.
•Further work is required with regard to
understanding the potential and actual
impact of ‘personalisation’ in young people’s
services.
•Since psychosis appears to occur more
commonly in ethnic minorities, particularly in
young black men who often end up in high
dependency or criminal justice environments,
it is crucial to address inequalities and their
antecedents. For example, Youth Space have
developed multi-faith networks and places of
worship to engage community leaders and
provide support for BME communities.
Allott, P., K.W.M. Fulford, B. Fleming, T.
Williamson and K. Woodbridge (2005)
‘Recovery, values and e-learning’, The Mental
Health Review. 10(4): 34-38.
Barry (2007) ‘Collective inquiry: understanding
the essence of best practice construction
in mental health’, Journal of Psychiatric and
Mental Health Nursing, 14: 558-565.
Branley, D. (2004) ‘Making and managing
audio recordings’, in C. Seale (ed), Researching
Society and Culture, 2nd edn, London: Sage.
Brecher, B. (2011) ‘’Which values? And
whose? A reply to Fulford’, Journal of
Evaluation in Clinical Practice, 17: 996-998.
Carr, S. (2007) ‘Participation, power, conflict
and change: Theorizing the dynamics of
service user participation in the social care
system of England and Wales’, Critical Social
Policy, 27: 266-276.
Coldham, T. (2012) A Review of Avon and
Wiltshire Mental Health Partnership NHS
Trust’s Approach to Involvement, London:
National Survivor User Network.
Cooper, B. (2003) ‘Evidence-based mental
health policy: a critical appraisal’, The British
Journal of Psychiatry, 183: 105-113.
Cowden, S., and G. Singh (2007) ‘The “User”:
Friend, Foe or Fetish? A Critical Exploration
of User Involvement in Health and Social
Care’, Critical Social Policy, 27: 5-23.
Denzin, N. and Y. Lincoln (1998) ‘Introduction:
Entering the Field of Qualitative Research’, in
N. Denzin and Y.Lincoln (eds), Strategies of
Qualitative Inquiry, London: Sage.
Department of Health (2004) The Ten
Essential Shared Capabilities: A Framework
for the Whole of the Mental Health Workforce,
National Institute for Mental Health England
and the Sainsbury Centre for Mental Health
Joint Workforce Support Unit in conjunction
with NHSU, London: Department of Health.
Department of Health (2010) Equity and
Excellence: Liberating the NHS. London:
Department of Health.
46
Department of Health (2011) No health without
mental health: a cross-governmental mental
health outcomes strategy for people of all
ages. London: Department of Health.
Department of Health (2012) No decision about
us without us: A guide for people who use
mental health services, careers and the public,
to accompany the implementation framework
for the mental health strategy. Produced
with the support of the Department of Health
through the Voluntary Sector Strategic Partner
Programme. London: Department of Health.
Dodd, K. (2011) Race equality training and
values-based practice, Mental Health Practice,
15 (2): 28-32.
England, E. (2011) Values Based
Commissioning in Mental Health. http://www.
rcgp.org.uk/revalidation-and-cpd/centre-forcommissioning/~/media/Files/CfC/CfC-Valuesbased-commissioning-in-mental-health.ashx
Foucault (1980) Power/Knowledge, Brighton:
Harvester.
Fulford, K.W. M. (2004) ‘Ten Principles of
Values-based Medicine’, in J. Radden (ed) The
Philosophy of Psychiatry: A Companion, New
York: Oxford University Press.
Fulford, K. W. M. (2011) ‘The value of evidence
and evidence of values: bringing together
values-based and evidence-based practice
in policy and service development in mental
health’, Journal of Evaluation in Clinical
Practice, 17: 976-987.
Fulford, K. W. M., E. Peile, and H. Carroll
(2012) Essential Values-Based Practice:
Clinical Stories Linking Science with People,
Cambridge: Cambridge University Press.
Geanellos, R. (2004) ‘Nursing based evidence:
moving beyond evidence-based practice in
mental health nursing’, Journal of Evaluation in
Clinical Practice, 10 (2): 177-186.
Gibbs, A. (1997) ‘Focus Groups’, Social
Research Update, Issue 19 http://sru.soc.
surrey.ac.uk/SRU19.html
Heginbotham, C. (2012) Values-Based
Commissioning of Health and Social Care,
Cambridge: Cambridge University Press.
Hewitt, J. (2009) ‘Redressing the balance in
47
References – continued
mental health nursing education: Arguments
for a values-based approach’, International
Journal of Mental Health Nursing, 18: 368-379.
Hodge, S. (2005) ‘Participation, discourse
and power: a case study in service user
involvement’, Critical Social Policy, 25(2): 164179.
Holstein, J. A. and J. F. Gubrium (1997) ‘Active
Interviewing’ in D. Silverman (ed), Qualitative
Research: Theory, Method and Practice,
London: Sage Publications.
House of Commons Select Committee,
Commissioning 1948 – 2010,
http://www.publications.parliament.uk/pa/
cm200910/cmselect/cmhealth/268/26805.htm
Hutchinson, P. (2011) ‘The philosopher’s
task: values-based practice and bringing
to consciousness underlying philosophical
commitments’, Journal of Evaluation in Clinical
Practice, 17: 999-1001.
Johnson, D. and C. Murray-Howard (2011)
Engagement in the commissioning cycle. A
Guide for Service Users, Carers, the Public,
GP’s, Commissioners and other stakeholders
in Mental Health Care Services, London:
National Mental Health Development Unit
(NMHDU).
Joint Commissioning Panel for Mental
Health (2013) Guidance on Values-based
Commissioning (to be published), London:
Joint Commissioning Panel for Mental Health.
Keys, I. (2011) ‘Central diktats and the
‘one-size-fits-all’ approach will become
less important’, Ethos Journal, http://www.
ethosjournal.com/home/item/282-healthconcerns
Krueger, R.A. and M.A. Casey (2009) Focus
Groups: A Practical Guide for Applied
Research, 4th edn, London: Sage.
Martin, C. (2000) ‘Doing Research in a Prison
Setting’, in V. Jupp, P. Davies, and P. francis
(eds), Doing Criminological Research, London:
Sage.
Mason, J. (2002) Qualitative Researching, 2nd
edn, London: Sage.
Mauger, S. and D. Deuchars (2010) Involving
48
Users in Commissioning Local Services,
London: Joseph Rowntree Foundation.
Health and Social Care: Beyond EvidenceBased Practice, London: Sage.
(ed), Researching Society and Culture, 2nd edn,
London: Sage.
McCarthy, J. and P. Rose (2010) Values-Based
Health and Social Care: Beyond EvidenceBased Practice, London: Sage.
Rose, N. (1996) ‘Governing “advanced” liberal
democracies’, in A. Barry, T. Osborne and
N. Rose (eds) Foucault and Political Reason:
Liberalism, Neo-liberalism and Rationalities of
Government, London: UCL Press.
Woodbridge, K. and K.M.W. Fulford (2004)
Whose values? A workbook for values-based
practice. London: The Sainsbury Centre for
Mental Health.
McIntosh, A., J. Dulson and J. Bailey-McHale
(2010) ‘The value and values of service users’
in J. McCarthy and P. Rose (eds) Values-Based
Health and Social Care: Beyond EvidenceBased Practice, London: Sage.
McLaughlin, H. (2009) ‘What’s in a name:
client, patient, customer, consumer, expert by
experience, service user: what’s next?’ British
Journal of Social Work, 19(6): 1101-1117.
Morgan, D. L. and R.A. Kreuger (1993) ‘When
to use focus groups and why’ in D. L. Morgan
(ed), Successful Focus Groups. London: Sage.
National Mental Health Development Unit and
the North West Mental Health Improvement
Programme (2011) A Reference Tool for
Commissioners (NMHDU and NW MH
Improvement Programme).
National Institute for Mental Health in England
(NIMHE) Values Framework (2004) http://www.
nmhdu.org.uk/silo/files/mha-values-framework.
pdf
Oakley, A. (1981) ‘Interviewing women: a
contradiction in terms’ in H. Roberts (ed),
Doing Feminist Research, London: Routledge
and Kegan Paul.
Owens, J. (2011) Creating a patient-led NHS:
some ethical and epistemological challenges.
http://www.londonjournalofprimarycare.org.uk/
articles/4543335.pdf
Perrault, M., J. Renaud, F. Bourassa, L.
Bauchesne, A. Mpiana, S. Bernier and D.
Milton (2010) ‘Implementation of a Panel of
Service Users for the Evaluation of Mental
Health Outpatient Services’, Evaluation and the
Health Professions, 33 (4): 480-496.
Ritchie, J. and L. Spencer (1994) ‘Qualitative
data analysis for applied policy research’, in
A. Bryman and R. G. Burgess (eds) Analysing
Qualitative Data, Abingdon: Routledge.
Rose, P. and J. Gidman (2010) ‘EvidenceBased Practice within Values-Based Care’, in
J. McCarthy and P. Rose (eds) Values-Based
Rose, N. (1998) ‘Governing Risky Individuals:
The Role of Psychiatry in New Regimes of
Control’, Psychiatry, Psychology and Law, 5
(2): 177-95.
Rush, B. (2004) ‘Mental health service user
involvement in England: lessons from history’,
Journal of Psychiatric and Mental Health
Nursing, 11: 313-318.
Sackett, D. L., S. E. Straus, W. S. Richardson
et al (2000) Evidence-based medicine: how to
practice and teach EBM, 2nd edn. Edinburgh:
Churchill Livingstone.
Seale, C. (2004) Researching Society and
Culture, 2nd edn, London: Sage.
Simons, H. (2009) Case Study Research in
Practice, London: Sage.
Simons, L., S. Tee and T. Coldham (2010)
‘Developing values-based education through
service user participation’, The Journal of
Mental Health Training, Education and Practice,
5(1): 20-27.
Stickley, T. (2006) ‘Should service user
involvement be consigned to history? A critical
realist perspective’. Journal of Psychiatric and
Mental Health Nursing. 13(5): 570-7.
Taylor, S. (2001) ‘Evaluating and Applying
Discourse Analytic Research’, in M. Wetherall,
S. Taylor and S. Yates (eds), Discourse as
Data: A Guide for Analysis, London: Sage.
Thomas, M., M. Burt and J. Parkes (2010) ‘The
Emergence of Evidence-Based Practice’, in
J. McCarthy and P. Rose (eds) Values-Based
Health and Social Care: Beyond EvidenceBased Practice, London: Sage.
Thornton, T. (2011) ‘Radical liberal valuesbased practice’, Journal of Evaluation in
Clinical Practice, 17: 988-991.
Tonkiss, F. (2004) ‘Analysing text and speech:
content and discourse analysis’, in C. Seale
49
together we
are stronger
National Survivor User Network
NSUN
27-29 Vauxhall Grove
London. SW8 1SY.
United Kingdom
telephone
020 7820 8982
email
[email protected]
website
www.nsun.org.uk
Registered Charity No.
113598
© National Survivor User Network 2013
network
nsun for mental health
50
NHS Midlands and East
St. Chads Court
213 Hagley Road
Birmingham
B16 9RG
Telephone
0121 695 2222