Recovery for real. A summary of findings from the REFOCUS programme

Abstract

This report summarises the finding from the REFOCUS programme, which took place in England from 2009 to 2014. The document is written for the general public, and describes what the study involved and what we found.
The REFOCUS programme was a 5 year research study which aimed to understand what is meant by personal recovery and to find effective ways of increasing the recovery support community-based adult mental health services offer to service users.
The goals of the REFOCUS programme were to address some questions about recovery:
• What is recovery? (Addressed in Section 1)
• How can workers support recovery? (Addressed in Section 2)
• How is recovery measured? (Addressed in Section 3)
Based on these findings, we developed a new intervention called the REFOCUS Intervention, which we evaluated in the REFOCUS trial. In Sections 4 to 10 of this report we describe:
• The REFOCUS intervention
• The REFOCUS trial – what we did and what we found
• What did staff and service users think of the REFOCUS intervention?
• How were patients and the public involved in the REFOCUS programme?
• What did the REFOCUS programme not address?

Full text

Recovery
for real
A summary of findings from
the REFOCUS programme

Recovery for real. A summary of findings from the REFOCUS programme 2
Recovery for real
A summary of findings from the REFOCUS programme
Ben Fortune
Victoria Bird
Ruth Chandler
Joanna Fox
Ruth Hennem
John Larsen
Clair Le Boutillier
Mary Leamy
Rob Macpherson
Julie Williams
Mike Slade

REFOCUS
Promoting recovery in mental health services
SECOND
EDITION
Recovery for real. A summary of findings from the REFOCUS programme 3
Introducing the REFOCUS programme
This report summarises the finding from the
REFOCUS programme, which took place in
England from 2009 to 2014. The document is
written for the general public, and describes what
the study involved and what we found.
Developing recovery-orientated services is the
goal of modern mental health care, particularly in
English-speaking countries. Before we describe
the findings from the REFOCUS programme, it is
important to note the differences between clinical
recovery and personal recovery.
Clinical recovery is an idea that has emerged from
the expertise of mental health professionals, and
involves getting rid of symptoms, restoring social
functioning and in other ways, ‘getting back to
normal’. Most mental health services are currently
organised to meet the goals of clinical recovery.
Personal recovery on the other hand, is an idea
that has emerged from the expertise of people
with lived experience of mental illness, and means
something different to clinical recovery. The most
widely used definition of personal recovery comes
from Bill Anthony:
‘Recovery is a deeply personal, unique process of
changing one’s attitudes, values, feelings, goals,
skills, and/or roles. It is a way of living a satisfying,
hopeful and contributing life even within the
limitations caused by illness. Recovery involves
the development of a new meaning and purpose
in one’s life as one grows beyond the catastrophic
effects of mental illness’.
This report is about personal recovery.
The REFOCUS programme was a 5 year research
study which aimed to understand what is meant
by personal recovery and to find effective ways of
increasing the recovery support community-based
adult mental health services offer to service users.
The goals of the REFOCUS programme were to
address some questions about recovery:
• What is recovery? (Addressed in Section 1)
• How can workers support recovery? (Addressed
in Section 2)
• How is recovery measured? (Addressed in
Section 3)
Based on these findings, we developed a new
intervention called the REFOCUS Intervention,
which we evaluated in the REFOCUS trial. In
Sections 4 to 10 of this report we describe:
• The REFOCUS intervention
• The REFOCUS trial – what we did and what we
found
• What did staff and service users think of the
REFOCUS intervention?
• How were patients and the public involved in the
REFOCUS programme?
• What did the REFOCUS programme not
address?
The REFOCUS manual was modified in
the light of all the findings of the REFOCUS
programme, and the second edition (shown
here) was published in 2014.
It can be downloaded (free) from:
researchintorecovery.com/refocus

Recovery for real. A summary of findings from the REFOCUS programme 4
Introducing the REFOCUS programme
Overall, the REFOCUS programme comprised a
review phase (bringing together what is already
known), followed by a development and evaluation
phase (creating and testing both a new intervention
and measures of recovery). The structure of the
programme is shown in Figure 1.
Figure 1: Structure of the REFOCUS programme
This report summarises the main findings
from the REFOCUS programme, to offer easy,
understandable access to the research. Where
a finding has been published, the academic
reference is numbered in the text and listed at the
end. This document was written by REFOCUS
researchers and the Lived Experience Advisory
Panel (LEAP) members with personal experience
of mental health problems and family members of
people with mental health problems.
Review phase
Conceptual framework of personal recovery
(described in Section 1)
Recovery in other countries
Recovery in current mental health service
users
Recovery for black individuals
Recovery Practice Framework (Section 2)
Staff experiences of supporting recovery
National survey
Measuring recovery (Section 3)
Reviews of measures of personal
recovery, strengths, recovery support
Development and evaluation phase
New intervention
Development of REFOCUS Intervention
(Sections 4 and 5)
Evaluation in the REFOCUS Trial
(Sections 6 and 7)
New measures (Section 3)
INSPIRE
Individualised outcome
Structured Assessment of Feasibility
(SAFE)

Recovery for real. A summary of findings from the REFOCUS programme 5
1. What is recovery?
There has been much confusion about what is
meant by the term, which is why the first task
for the study team was to develop a conceptual
framework of personal recovery.
We undertook three studies to deepen our
understanding of recovery. This understanding
provided the foundation for the rest of
the REFOCUS programme.
Developing the conceptual framework for
personal recovery
We reviewed studies that described a theory or
model of recovery . This involved conducting a
systematic review, in which a range of approaches
are used to find and review all studies in the
available literature.
In total, we found 87 studies that fitted our
inclusion criteria, which we then synthesised to
give a summary from these studies. The main
findings were:
1. Characteristics – we identified thirteen ways
people have described their experiences of
recovering from mental illness. These included
recovery being an active and gradual process, a
journey, a struggle, has stages, is a life-changing
experience, is without cure and unique to them.
2. Stages – we identified agreement that recovery
happens in stages, although each person’s
experience is different so stages may not be linear.
• Stage 1 is a crisis period where a person is
overwhelmed yet unaware of the extent of their
illness.
• Stage 2 involves an awareness of illness and a
turning point where help is accepted.
• Stage 3 involves believing recovery is possible
and a determination to recover.
• Stage 4 involves rebuilding of life and a start on
the road to recovery.
• Stage 5 involves personal growth, an improved
quality of life and self-esteem, integration into
the community, and ‘living beyond the disability’.
3. Processes – recovery seems to involve five
main recovery processes, which we called the
CHIME Framework: Connectedness, Hope and
optimism, Identity, Meaning and purpose in life and
Empowerment. This framework is shown in Figure
2, and has becoming a widely-used approach to
understanding recovery.
Recovery
Connectedness
Empowerment
Meaning in
life Identity
Hope and
optimism
Figure 2: The CHIME Framework of recovery processes
1

Recovery for real. A summary of findings from the REFOCUS programme 6
Do other countries have similar
understandings of recovery?
Some people have suggested that recovery
is a Western concept which may not apply in
other countries. To investigate this, we updated
and extended our systematic review to look at
how recovery is understood internationally . We
identified 105 theories and models of recovery, in
115 papers, from 11 countries: Australia, Canada,
Iceland, Ireland, New Zealand, Norway, South
Korea, Sweden, Taiwan, United Kingdom and the
United States of America.
The CHIME recovery processes were consistently
found in the international papers, meaning that
it can be applied to different cultures. However,
we did find that most current evidence (in
terms of studies we identified and included in
this review) comes from Western and English-
speaking countries. We therefore identified a need
for research to focus on what recovery means
to people from different countries and ethnic
backgrounds, such as people from Black and
Minority Ethnic (BME) groups in England.
Do current mental health service users have
similar understandings of recovery?
We wanted to know whether our Conceptual
Framework could be applied to people currently
using mental health services, who may be at an
earlier stage of their recovery journey.
To address this, we held seven focus groups
(group interviews where everyone can talk
together) with a total of 48 mental health service
users . Participants were asked about their
experiences of personal recovery and what they
wanted services to help them with. The service
users came from three NHS Trusts across
England:
• 2gether NHS Foundation Trust
• Leicestershire Partnership NHS Trust
• South London and Maudsley NHS Foundation
Trust
Our CHIME framework of recovery was relevant to
current mental health service users. However there
were three areas of particular emphasis identified
by people currently using services:
• Practical support was an important factor,
including help with daily activities and tasks.
• Issues around diagnosis and medication
were brought up by participants. They talked
about taking control over their medication or
leaving this responsibility to clinical staff.
• Some participants were sceptical about
recovery and voiced the idea that recovery
really means a reduction in resources in
the mental health service.
Recovery support for black individuals
Very little research has been conducted into the
perspectives of recovery for people from black
communities (i.e. of African, Caribbean and black
British ethnicity), with even less attention focused
on how to support their recovery. Therefore within
the REFOCUS study we specifically considered
recovery support for black individuals.
We wanted to understand the meaning of recovery,
and the barriers and facilitators of recovery, both in
their relationship with mental health services and
in the wider context of the individual’s life. The goal
was to identify the types of support and services
that individuals feel would support their recovery.
We ran four focus groups and 14 individual
interviews in four NHS Trusts in England (South
London and Maudsley NHS Foundation Trust,
Leicestershire Partnership NHS Trust, 2gether NHS
Foundation Trust and Tees Esk and Wear Valley
NHS Foundation Trust). These locations were
chosen to include a range of metropolitan, urban
and semi-rural areas.
2
3

Recovery for real. A summary of findings from the REFOCUS programme 7
Our analysis identified a core category of ‘Identity
- gaining a positive sense of self’ which was linked
to all other major themes, as shown in Figure 3.
The central importance of ‘Identity’ informed
our approach to developing the REFOCUS
Intervention.
Societal threats
to identity
Negative sense
of self
Facilitators of
a positive sense
of self beyond
the mental health
system
- Individual
- Interpersonal
- Societal
Continuum of recovery:
from returning to the
same as before to
becoming new person
Mental health
system
facilitators of
a positive sense
of self
Process
of recovery
Identity:
Gaining
a positive
sense
of self
Illness as a threat
to society
Figure 3: Recovery influences identified by black mental health service users

Recovery for real. A summary of findings from the REFOCUS programme 8
Mental health services are starting to introduce
recovery-based practice, so guidance on how to
apply recovery in practice is increasingly available.
We wanted to summarise this guidance.
How is recovery supported in different
countries?
We looked at 30 international documents that
gave various recovery-based guidance from
six countries: Denmark, England, Ireland, New
Zealand, Scotland and the United States . We
summarised the findings in a new Recovery
Practice Framework, shown in Figure 4.
Supporting recovery takes place at a societal level
(Promoting citizenship), an organisational level
(Organisational commitment) and an individual
level (Supporting personally defined recovery and
Working relationships).
What do staff think affects their ability to
support recovery?
After developing the Recovery Practice
Framework, we spoke to staff in focus groups.
We asked staff and team leaders to talk about
how they support recovery and what they thought
affected their ability to provide recovery-based
support .
The staff came from five Mental Health Trusts
across England:
• South London and Maudsley NHS Foundation
trust
• 2gether NHS Foundation trust
• Leicestershire Partnership NHS Trust
• Devon Partnership NHS Trust
• Tees Esk and Wear Valleys NHS Foundation
Trust.
We ran ten focus groups, involving a total of
34 clinical staff and 31 team leaders. We also
conducted individual interviews with 18 clinical
staff, 6 team leaders and 8 senior managers.
Staff frequently talked about how the different
demands within mental health services affected
their ability to support recovery. In our analysis,
this was labelled as a core, over-arching theme of
‘competing priorities’.
We identified three groups of priorities:
1. Business priorities - how financial and
organisational priorities influence practice
2. Health system priorities - how recovery has
been made to fit a more traditional medical view
of health involving clinical tasks such as
monitoring that people are taking medication,
and the use of professional language
3. Individual priorities - how staff understand their
role and prioritise their work.
This showed us that for recovery to be put into
practice, the whole system would have to be
changed to develop shared beliefs about recovery
in mental health services. To better understand
these priorities, we systematically reviewed
international studies about staff understandings of
recovery. Staff understand their role as balancing
clinical recovery, personal recovery and a new
influence of ‘service-defined recovery’:
an understanding of recovery which is owned by
the mental health system, and which focuses on
reducing costs by limiting access to services and
setting goals for discharging and moving people
more quickly through the system.
practices.
2. How can workers support recovery?
Figure 4: Recovery Practice framework
Promoting
citizenship
Organisational
commitment
Supporting
personally-
defined
recovery
Working
relationships
Recovery
4
5

Recovery for real. A summary of findings from the REFOCUS programme 9
National survey of recovery support
Our next step was to measure how much mental
health services currently support recovery.
We did a national survey of mental health service
users, staff and team leaders. The survey used an
established measure of recovery support called
the Recovery Self Assessment (RSA). This
was completed by staff, team leaders and service
users. We also asked service users to complete a
measure of personal recovery called
the Questionnaire about the Processes of
Recovery (QPR).
22 team leaders, 109 clinical staff and 120 mental
health service users from six NHS Trusts across
England completed these questionnaires. The
survey found that:
• Team leaders had more positive views on how
their teams supported recovery than clinical staff
and service users.
• Teams within trusts differed on recovery
practices.
• Increasing the amount and quality of recovery
support could support personal recovery.
• 76% of staff reported having experience of
supporting a family member or friend
• 39% of staff reported having had personal
experience of mental health problems
• Among staff with personal experience, 48%
had fully disclosed this experience to workplace
colleagues, 32% had partially disclosed and
20% had not disclosed
• Among staff who disclosed, 79% reported they
had received support and 21% reported they
had not.

Recovery for real. A summary of findings from the REFOCUS programme 10
Recovery research requires questionnaires to
measure recovery, in order to understand recovery
better and to assess whether approaches
to improve recovery in mental health have
actually worked. In REFOCUS we created new
questionnaires and tested them, along with some
existing scales, to see how well they worked. Each
is freely available at www.researchintorecovery.
com/our-measures.
How is personal recovery assessed?
In order to assess recovery we had to identify
a suitable measure. We conducted a systematic
review of the literature, and in 336 papers we
identified 13 recovery measures . We then rated
these measures to see how well they fitted with
the five CHIME recovery processes. The findings
were:
• The Recovery Assessment Scale (RAS) was
published the most.
• The Questionnaire about the Recovery
Processes (QPR) was the only measure to fit with
the CHIME framework.
• No measure was sufficiently valid (i.e. it measures
what it should measure) and reliable (accurate)
for our purposes.
How are strengths assessed?
When people are assessed by mental health
services, the process usually involves identifying
their symptoms, problems and needs, and may not
assess their positive attributes, what they are good
at, their personal qualities, talents and abilities.
These can all be seen as people’s strengths.
Strengths-based assessments are not new, but
recent developments in clinical practice have seen
a much greater focus on an individual’s strengths.
This has led to an increase in the evaluation
of strengths-based approaches. However, no
systematic review of strengths assessments for
use within mental health has been published.
We conducted a systematic review of strengths
assessments .
A total of 12 strengths assessments were
identified. These measured three aspects of
strengths:
1.
Individual factors
, which are found within
a person, e.g. talents, capabilities, skills,
interests and personal attributes.
2.
Environmental factors
, which are found
outside a person, e.g. family, community,
financial resources, social support,
transportation, political rights and housing.
3.
Interpersonal factors
, which are a combination
of individual and environmental factors,
available, e.g. relationships and life options.
We selected the Strengths Assessment Worksheet
(SAW), which was the most widely used, for use in
the REFOCUS Intervention.
How is recovery support by mental health
staff assessed?
We conducted a systematic review of all measures
that assess recovery support from mental health
staff . We identified 13 measures, of which 6 were
included in our review, but none were sufficiently
tested for use in REFOCUS. We therefore
developed our own measure called INSPIRE,
which is based on the five recovery processes
in the CHIME framework and the Support and
Relationship individual-level domains from the
Recovery Practice Framework.
3. How is recovery measured?
6
7
8

Recovery for real. A summary of findings from the REFOCUS programme 11
INSPIRE
INSPIRE is a new measure of staff support for
recovery in mental health.
We developed INSPIRE in consultation with 61
experts on recovery, including service users,
clinical staff, researchers, and carers. The measure
was piloted with 20 people currently using
community mental health teams in South London.
To more fully evaluate INSPIRE, we then asked 92
people at three different points in time to complete
it. Our research showed that INSPIRE was an
understandable, reliable and valid questionnaire .
INSPIRE is rated by service users, and has two
parts. The first part, called the Support sub-scale,
has 20 items which are rated as important or not
for recovery. For the items which are important, the
amount of support received from a mental health
worker is also rated. Some of the items from
the Support sub-scale are shown in Figure 5
(below).
In the second part, called the Relationship sub-
scale, the person rates their relationship with their
mental health worker. It has seven items and the
person rates on a five-point scale ranging from
‘Strongly disagree’ to ‘Strongly agree’. The items
in the Relationship sub-scale are shown in Figure 6
(below).
We also created and tested a short version called
Brief INSPIRE, which contains just five questions
asking how recovery is supported by a mental
health worker.
Both INSPIRE and Brief INSPIRE produce
numerical scores of recovery support. They can
be downloaded at
www.researchintorecovery.com/inspire
Figure 5: The Support sub-scale in the INSPIRE measure
Figure 6: The Relationship sub-scale in the INSPIRE measure
9

Recovery for real. A summary of findings from the REFOCUS programme 12
Individualised outcome
To identify an individual’s goals, we asked
individuals to choose a goal that is important to
them and then complete a questionnaire that
matches their identified goal. After receiving
support, service users are asked about their goal
progress and to complete the same questionnaire
again. We tested this approach to measuring
change with 92 mental health service users, and
found that 87% were able to identify a goal and
complete the relevant questionnaire. At three
months, 47% had reached or exceeded their
goal. This approach to measuring achievement
of a personally valued goal was then used in the
REFOCUS trial.
How feasible is implementing a complex
intervention?
Some interventions are recommended for use but
the resources needed to provide them may be
lacking. This leads to a waste of time and money
in mental health services. In order to assess
the feasibility of interventions, we developed a
new measure called Structured Assessment of
FEeasibility (SAFE) .
We looked at studies assessing implementation,
and focused on the things that enabled
successful implementation. Overall we identified
15 trial reports and 5 protocols from different
types of interventions. In total 95 influences on
implementation were found, which we combined
to produce the SAFE checklist.
SAFE is a checklist to assess the feasibility of
implementing a complex intervention within mental
health services within the NHS. The checklist is
designed to be used by systematic reviewers,
commissioners, managers and policy-makers
to help them decide on whether an intervention
is feasible and should be recommended for use
more widely. It can also be used by researchers
who are developing an intervention to ensure they
consider factors which may influence whether the
intervention is successfully implemented.
SAFE has 16 questions: eight assessing blocks
to implementation and eight assessing facilitators
of implementation. Some example questions are
shown in Figure 7.
The full scale can be downloaded at
www.researchintorecovery.com/safe
BLOCKS SUB-SCALE
These items are blocks to implementation.
1. Do staff require specific training to
deliver the intervention?
Yes Partial No Unable to rate
Yes:
The intervention requires more than four hours
of training
Partial:
The intervention requires up to four hours of
training
No:
The intervention does not require any specific
training
Unable to rate:
Not enough information provided to rate item
2. Is the intervention complex?
Yes Partial No Unable to rate
Yes:
The intervention is made up of more than three
separate components
Partial:
The intervention contains two or three separate
components
No:
The intervention only has one component
Unable to rate:
Not enough information provided to rate item
etc
Figure 7: Example questions from the SAFE measure
10

Recovery for real. A summary of findings from the REFOCUS programme 13
Developing the REFOCUS Intervention
In recovery research, values and principles are
important. We developed our intervention using
three principles:
1. Meaningful involvement from people with lived
experience in the REFOCUS Programme
2. An emphasis on supporting recovery for black
service users
3. Less emphasis on diagnosis so we developed
an intervention for people with any diagnosis
The studies described in Sections 1 to 3 informed
how we developed the intervention. Development
involved consultation with 58 people with wide-
ranging experience, as service users, carers,
workers, researchers and policy-makers.
The resulting intervention is described in the first
edition of the REFOCUS manual, which is free to
download at
www.researchintorecovery.com/refocus
What is the REFOCUS Intervention?
The REFOCUS Intervention is a team-level
approach to increasing recovery support by
providing training and support to mental health
staff in team they work in. There are two parts to
the intervention:
1. Recovery promoting relationships (how staff
work with service users)
2. Working practices (what staff and service users
do)
Recovery-promoting relationships focus on the
relationship between the service user and staff.
This is addressed by:
• Skills training for staff in coaching
• Developing a shared team understanding of
personal recovery
• Exploring staff values
• A partnership project involving people who use
services
• Raising service user expectations
Working practices refers to the quality and type of
support provided for the service user by a mental
health worker. This is addressed by:
• Understanding the service user’s values and
treatment preferences
• Assessing and increasing the strengths of the
service user
• Supporting the service user in working on the
goals that are important to them.
4. The REFOCUS Intervention
11

Recovery for real. A summary of findings from the REFOCUS programme 14
The REFOCUS Model
For evaluation purposes, we develop the
REFOCUS model. This describes the intervention
and how it should work, as shown in Figure 8.
Recovery-promoting relationships
Coaching skills, team and individual understanding of recovery,
Partnership Project, service user expectations.
Working practices
1. Understanding values and treatment preferences
2. Strengths assessment
3. Supporting goal-striving
More pro-recovery norms and values within the team
More knowledge about personal recovery
Plan to use coaching and the three working
practices
More experiences of coaching. More focus on
strengths, values and goal-striving
Increased hopefulness, empowerment, quality of life,
wellbeing
More pro-recovery values in workers
More skills in coaching and the three working
practices
More use of coaching and the three working
practices
More support for personal recovery
Improved personal recovery
Team Values
Individual
skills
Knowledge
Skills
Behavioural
intent
Behaviour
Content
Process
Proximal
Distal
INTERVENTION
PRACTICE
CHANGE
EXPERIENCE OF
PERSON USING
THE SERVICE
OUTCOME FOR
PERSON USING
THE SERVICE
Figure 8: The REFOCUS Model

Recovery for real. A summary of findings from the REFOCUS programme 15
Staff are given two types of training.
5.1 Personal Recovery Training
The Personal Recovery Training provides reflection
opportunities to allow teams:
• To develop a shared understanding about what
personal recovery means for their team and
how they work together, including the REFOCUS
conceptual framework for personal recovery
• To consider staff personal and professional
values and how these can support recovery
• To identify ways of relating to people using the
service by increasing staff self-awareness about
the impact of their own values on their recovery
practice
• To increase knowledge, skills and motivation
to work in a recovery orientated way and a
consequent pro-recovery language created by a
shared team understanding
• To plan the Partnership Project between staff
and people using the service (aiming to increase
partnership working through an experience of
doing or learning something jointly)
Personal recovery training was provided for the
whole multidisciplinary team and delivered by
two trainers from Rethink Mental Illness charity, at
least one of whom had lived experience of mental
illness. Training involved 3 half-day sessions,
spaced 2-4 weeks and 3 months apart, at the start
of the intervention. Each training session included
materials to read or watch before the session.
A combination of training methods were used,
including group discussions, role play and learning-
by-doing (i.e. practising skills outside of sessions).
5.2 Coaching for Recovery training
The Coaching for Recovery training supported
both the Recovery-promoting Relationships and
Working practices components of the intervention.
Staff were encouraged to use coaching values
and techniques in their work with service users,
specifically when focussing on the person’s values,
preferences, strengths and goal-striving.
In the training, workers were taught the REACH©
core coaching competencies:
• Reflect: listening skills throughout
the conversation
• Explore: use of powerful questions and the skill
to acknowledge a person’s contribution
• Agree Outcome: skill to challenge and confront,
permission and intrusion
• Commit to action: goal setting, holding
the Coaching space and timing
• Hold to account: skill of giving and receiving
Feedback Effectively
The Recovery Coaching Skills training was
provided to the whole multidisciplinary team by a
skilled coaching trainer. Training involved one full
day and 2 half-day sessions, spaced one month
apart, at the start of the intervention. Follow-up
phone support and booster sessions was also
available, if requested.
The intervention was then tested in community
mental health services in two NHS Trusts in
England. This part of the study was called the
REFOCUS Trial.
5. What staff training is involved?
12, 13

Recovery for real. A summary of findings from the REFOCUS programme 16
What did we do?
To evaluate the REFOCUS Intervention, we did
a randomised controlled trial (RCT). An RCT is
a rigorous scientific experiment to test whether
an intervention works. It involves randomly
assigning (i.e. by chance) people to either receiving
the intervention (‘intervention group’) or not
receiving the intervention (‘control group’), and
then comparing which group does better. We used
the REFOCUS trial to test our intervention .
The trial took place in two NHS Trusts in England:
South London and Maudsley NHS Foundation
Trust (SLaM) and 2gether Partnership NHS
Foundation Trust. Teams randomly allocated to
the intervention arm were given the REFOCUS
manual and training and support for one year to
help them increase their recovery support.
To test whether the intervention was beneficial
for people using services, we randomly chose 15
people from the caseload of each participating
team. We asked them to complete questionnaires
before the intervention and at the end of
the intervention (one year later).
All service users were asked to fill out several
questionnaires, including:
• The Questionnaire about the Processes of
Recovery (QPR) about their personal recovery
• The Client Satisfaction Questionnaire (CSQ)
about their satisfaction with mental health
services
• INSPIRE about the recovery support from their
worker
• The Recovery Fidelity Scale (RFS) to rate how
much each part of the REFOCUS intervention is
experienced
• The Client Service Receipt Inventory (CSRI) to
collect information about service use.
We also asked them to complete questionnaires
about well-being, empowerment, hope, goals, and
health and social needs.
One questionnaire was completed by
the researcher:
• The Brief Psychiatric Rating Scale (BPRS) which
measures symptoms
For the 15 service users from each trial team, we
identified a member of staff who knew them well,
to complete some questionnaires about them.
• The Health of the Nation Outcome Scale
(HoNOS) which assesses social disability.
• The Camberwell Assessment of Need (CANSAS)
which assesses health and social needs
(completed by both the service user and staff)
• The Global Assessment of Functioning (GAF)
which assesses functioning.
All mental health staff that took part in the study
also completed questionnaires related to their own
knowledge and attitudes about recovery, and their
use of the REFOCUS Intervention.
6. The REFOCUS Trial
14

Recovery for real. A summary of findings from the REFOCUS programme 17
What did we find?
Between April 2011 and May 2012, 27 teams
(18 SLaM, 9 2gether) and 403 service users were
recruited. There were 14 team (9 SLaM, 5 2gether)
in the intervention arm and 13 teams (9 SLaM, 4
2gether) in the control arm. These teams included
13 Recovery teams (4 control, 9 intervention),
four Psychosis teams (2 control, 2 intervention),
three community forensic teams (1 control, 2
intervention), three assertive outreach teams (3
control), two supported living teams (2 control),
one low support team (1 intervention), and one
early intervention team (1 control). A total of 532
staff participated in baseline and follow-up.
Service users in the intervention group did not
differ on our main questionnaire that measured
personal recovery (Questionnaire about
Processes of Recovery, QPR). There were some
improvements in other outcomes, with higher
scores for functioning (GAF) and fewer service user
rated unmet needs (CANSAS) in the intervention
group at follow-up.
To understand why this was, we looked into this
further and discovered that not all the teams in
the intervention arm of the study participated
fully in the intervention. Service users who were
receiving care from teams that participated more
fully had significantly higher QPR Interpersonal
scores (i.e. recovery-supporting relationships)
at follow-up than those in low participation
intervention teams and control teams.
In the REFOCUS Trial, we specifically included
people who described themselves as black
African, black Caribbean, black British or from
other black backgrounds. This allowed us to test
whether black individuals in the intervention group
experienced greater improvements in (a) recovery
(as measured by QPR) and (b) satisfaction (as
measured by CSQ) compared to those receiving
usual care. We found that there was no beneficial
effect of receiving the intervention on either
recovery (measured using QPR) or on satisfaction
(measured using CSQ).
What does this mean?
We think there are several possible reasons why
we did not show overall improvement in recovery.
Most likely is that the intervention was not fully
implemented. Not all teams participated fully in
the intervention. Where staff participated more,
there was an increase in recovery support and
patient-reported recovery in the Interpersonal
sub-scale of the QPR. Secondly, we only ran
the intervention for 12 months, but the intended
changes may take longer, both for staff working
in new ways and for service users experiencing
different expectations about their role in recovery.
Finally, the QPR measure may not have been
sufficiently sensitive to changes in recovery.

Recovery for real. A summary of findings from the REFOCUS programme 18
We wanted to understand the experience of
people involved in the REFOCUS intervention.
7.1 Service user experiences of receiving
the REFOCUS intervention
Research into service user experience of receiving
a recovery-orientated service is currently lacking.
So we decided to explore the service user
experience of the REFOCUS intervention. We
spoke to service users from teams using the
REFOCUS intervention, comprising 24 individual
interviews and 13 people in two focus groups. We
found:
• Positive changes in the relationship between
service users and mental health staff
• An increase in conversations about values,
strengths and goals which service users found
empowering
• Personal qualities of staff such as honesty,
genuine caring and openness were important in
a recovery-supporting relationship
• Some service users failed to notice any changes
in their relationship. Reasons given were time
restraints and a focus on risk and medication.
Regardless of whether or not service users noticed
changes, the relationship with staff was the key
to service users reporting they had had a positive
experience of care, and was a foundation of
recovery support.
7.2 Staff experiences of delivering
the REFOCUS intervention
We also wanted to understand how staff
experienced the intervention. We spoke to staff
who took part in the REFOCUS intervention,
comprising 28 individual interviews and 24 people
in four focus groups. We found:
• Staff highly valued the coaching training and
used the coaching skills to have empowering,
motivational type conversations with service
users
• Staff reported the benefits of the ‘Values and
treatment preferences interview guide’ and
the ‘Strengths assessment worksheet’ in
the working practices component of
the intervention. These helped them to have
more wide-ranging conversations with service
users about what was important to them and
about their strengths.
• ‘Supporting goal-striving’ was discussed less by
staff as they felt that the component was not
a new addition to their clinical practice.
• The whole team training and reflection sessions
supported recovery practice.
Based on these staff perspectives of the
REFOCUS Intervention, we would recommend
the wider use of coaching and the three working
practices, as well as a team-based approach to
supporting recovery.
7. What did staff and service users think of the REFOCUS
intervention?

Recovery for real. A summary of findings from the REFOCUS programme 19
7.3 Implementing a complex intervention
We wanted to look at the bigger picture and find
out what staff said influenced their ability to put the
intervention into practice. We therefore conducted
28 face-to-face interviews with mental health staff,
3 interviews with trainers, 4 focus groups with
intervention teams and also looked at 28 written
trainer reports .
Six factors influenced the implementation of the
REFOCUS Intervention, which we organised into
two over-arching themes: Organisational readiness
and Training effectiveness. These are shown in
Figure 9 (below).
Three areas were important for changing practice:
staff skill development, talking about implementing
the intervention and actually implementing the
intervention. Practitioners made interpretations
about how committed an organisation is by looking
at the resources their organisation provided.
From a research perspective, measuring
‘organisational readiness’ would be a good way
of selecting both organisations and teams in
RCTs, as this would increase the likelihood of
implementation, so less time and money is wasted
in the research.
Organisational
Readiness
NHS trust
readiness
Team
readiness
Practitioner
readiness
Engagement
strategies
Modelling
recovery
Delivery style
Training
Effectiveness
Figure 9: The Support sub-scale in the INSPIRE measure
15

Recovery for real. A summary of findings from the REFOCUS programme 20
Patients and Public Involvement (PPI) in research
is now public policy. The focus of the REFOCUS
project was transforming mental health services
by placing more importance on the expertise by
experience of service users and carers. Therefore,
the meaningful involvement of ‘lived experience’
(the perspective of mental health service users or
carers) was of particular importance.
A total of 698 service users took part in the
different REFOCUS studies. However, PPI involves
more active involvement than just providing data.
Service users and carers were advisors and
researchers in the REFOCUS programme.
The Lived Experience Advisory Panel (LEAP)
comprised people with personal experience of
mental health problems and family members
of people with mental health problems. LEAP
members made many contributions, including
advising on recruitment approaches and
study information sheets and consent forms,
commenting on posters about the study, informing
the choice of questionnaires and interview
schedules, commenting on the content and
format of INSPIRE and the individualised outcome
measures, helping with the development of the
REFOCUS Conceptual Framework, giving detailed
feedback on the draft REFOCUS manual, and in
training of interviewers for the clinical trial. LEAP
members were involved in the Steering Group and
in the International Advisory Board. There was also
a virtual BME advisory group for a sub study within
the programme.
LEAP also contributed to knowledge
dissemination. Members made presentations at
conferences such as INVOLVE and REFOCUS on
Recovery 2012, were involved as co-authors in
several REFOCUS publications, and commented
on the final report, including co-authoring the PPI
chapter.
LEAP members were involved in a mid-term
evaluation of PPI in REFOCUS. To formally
evaluate the impact of LEAP, we kept a log of
recommendations from LEAP and other advisory
committees, as well as noting whether the
recommendation was implemented. This allowed
us to show that PPI added value to the research,
especially in relation to scientific decisions and
committee composition .
Finally, recruitment to all REFOCUS posts included
personal experience of mental health problems
and recovery as a ‘desirable’ eligibility criteria.
Among the research team were researchers who
had used mental health services, and who had
personal experience of supporting someone close
to them who had mental health problems.
8. How were patients and the public involved?
16

Recovery for real. A summary of findings from the REFOCUS programme 21
Early in the study we made the case that recovery
ideas should be tested in practice , and we were
able to test some aspects of recovery in this study.
There were though many important areas we were
not able to address. These included:
1. The wider impact of social factors on recovery
– although we published a review in this area ,
we were not able to incorporate the review
findings into the REFOCUS Intervention
2. The contribution and experience of family and
friends to recovery
3. The contribution of service users to
implementing the REFOCUS Intervention
4. Supporting wellbeing in staff
5. Supporting staff with personal experience of
mental illness and recovery
6. The organisational commitment to a recovery
orientation
Academic papers from the REFOCUS programme
are listed at the end of this report. We also used
several other approaches to communicate our
research findings.
1. Website In 2009 we developed the Section
for Recovery website
(www.researchintorecovery.com), which contains
information about the REFOCUS study
2. The REFOCUS manual describes
the REFOCUS Intervention and is free to
download at www.researchintorecovery.com/
refocus
3. The REFOCUS Protocol for the REFOCUS
Trial was published in an open access
journal:
www.biomedcentral.com/1471-244X/11/185
4. The Final report will be published at
www.journalslibrary.nihr.ac.uk
5. The document you are reading is a Summary
of findings written for a non-specialist audience
6. The REFOCUS On Recovery conferences are
international conferences, which were organised
in the context of the REFOCUS programme by
the wider Section for Recovery research
group, in collaboration with key partners.
Conferences were held in 2010, 2012 and
2014, and findings from REFOCUS were
presented at all three conference. Many mental
health service users, carers, workers, managers
and system leaders attended. We used a Twitter
account for REFOCUS On Recovery 2014
We can identify some impacts of REFOCUS,
including:
1. The conceptual framework for recovery is
becoming widely used as a theory base,
with a number of research teams internationally
publishing studies using CHIME as the
framework for recovery research.
2. The recovery practice framework underpins
policy in Australia (Australian Health Minister’
Advisory Council (2013) A national framework
for recovery-oriented mental health services.
Policy and theory. Canberra: AHMAC).
3. INSPIRE is being used by a number of services
in England, and is recommended by the national
ImROC programme (Shepherd et al (2014)
ImROC Briefing paper 8. Supporting recovery
in mental health services: Quality and
Outcomes, London: ImROC). It is being
translated into a number of other languages,
including Danish, Estonian, German, Russian
and Swedish.
4. The REFOCUS intervention is being taken
forward in a number of ways. It is being
provided to services in England as part of the
Innovation Network arising from the
Schizophrenia Commission. Training in
REFOCUS has been given in Ireland. A large
study called PULSAR is underway in Australia,
to replicate the intervention and extend into
primary care.
9. What did REFOCUS not address?
10. How are we communicating our findings?
11. Has the REFOCUS programme made a difference?
17
18

Recovery for real. A summary of findings from the REFOCUS programme 22
The REFOCUS team was led by Mike Slade
(Principal Investigator) and Mary Leamy
(Programme Co-ordinator). The study team at
the Institute of Psychiatry, Psychology &
Neuroscience comprised research workers
(Victoria Bird, Agnes Chevalier, Eleanor Clarke,
Harriet Jordan, Clair Le Boutillier, Genevieve
Wallace, Julie Williams), University placement
students (Faye Bacon, Ben Fortune, Monika
Janosik, Matt Long, Kai Sabas) and administrators
(Kelly Davies, Deborah Kenny, Becks Leslie). The
study team at 2gether NHS Foundation Trust was
led by Rob Macpherson (Consultant Psychiatrist)
and Genevieve Riley (Senior Clinical Studies
Officer), and included Clinical Studies Officers
(Alison Harding, Emma Page) and research
assistants (Sophie Brett, Kevanne Sanger, Julia
Jones, Clare Whitehead and Katie Yearsley).
The REFOCUS Lived Experience Advisory Panel
(LEAP) involved people who live with or care
for someone with mental illness, and provided
advice to the research team throughout the study.
Rethink Mental Illness supported the study in many
ways, including providing the recovery training
for the REFOCUS intervention and supporting
dissemination of findings. An International Advisory
Board and other advisory panels and experts also
supported the study.
This report can be downloaded at
www.researchintorecovery.com/refocus
Please cite this report as:
Fortune B, Bird V, Chandler R, Fox J, Hennem R,
Larsen J, Le Boutillier C, Leamy M, Macpherson
R, Williams J, Slade M (2015)
Recovery for
real. A summary of findings from the REFOCUS
programme
, London: Rethink Mental Illness.
12. The REFOCUS Team
13. How do I get this report?
This report presents independent research funded
by the National Institute for Health Research (NIHR)
under its Programme Grants for Applied Research
(PGfAR) Programme (Grant Reference Number
RP-PG-0707-10040), and in relation to the NIHR
Biomedical Research Centre for Mental Health at
South London and Maudsley NHS Foundation
Trust and [Institute of Psychiatry, Psychology &
Neuroscience] King’s College London. The project
will be published in full in the NIHR PGfAR journal.
The views expressed in this publication are those
of the authors and do not necessarily reflect those
of the NHS, the NIHR, MRC, CCF, NETSCC, the
PGfAR programme or the Department of Health.
Further information available at
www.researchintorecovery.com/refocus.
Funding

Recovery for real. A summary of findings from the REFOCUS programme 23
1 Leamy M, Bird V, Le Boutillier C, Williams J, Slade M (2011)
A conceptual framework for personal recovery
in mental health: systematic review and narrative synthesis
, British Journal of Psychiatry, 199, 445-452.
2 Slade M, Leamy M, Bacon F, Janosik M, Le Boutillier C, Williams J, Bird V (2012)
International differences
in understanding recovery: systematic review
, Epidemiology and Psychiatric Sciences, 21, 353-364.
3 Bird V, Leamy M, Tew J, Le Boutillier C, Williams J, Slade M (2014)
Fit for purpose? Validation of a
conceptual framework for personal recovery with current mental health consumers
, Australian and New
Zealand Journal of Psychiatry, 48, 644-653.
4 Le Boutillier C, Leamy M, Bird VJ, Davidson L, Williams J, Slade M (2011)
What does recovery mean in
practice? A qualitative analysis of international recovery-oriented practice guidance
, Psychiatric Services,
62, 1470-1476.
5 Le Boutillier C, Slade M, Lawrence V, Bird V, Chandler R, Farkas M, Harding C, Larsen J, Oades L,
Roberts G, Shepherd G, Thornicroft G, Williams J, Leamy M (2014)
Competing priorities: staff
perspectives on supporting recovery
, Administration and Policy in Mental Health and Mental Health
Services Research. DOI 10.1007/s10488-014-0585-x.
6 Shanks V, Williams J, Leamy M, Bird V, Le Boutillier C, Slade M (2013)
Measures of personal recovery: A
systematic review
, Psychiatric Services, 64, 974-980.
7 Bird V, Le Boutillier C, Leamy M, Larsen J, Oades L, Williams J, Slade M (2012)
Assessing the strengths of
mental health service users - systematic review
, Psychological Assessment, 24, 1024-1033.
8 Williams J, Leamy M, Bird V, Harding C, Larsen J, Le Boutillier C, Oades L, Slade M (2012)
Measures
of the recovery orientation of mental health services: systematic review
, Social Psychiatry and Psychiatric
Epidemiology, 47, 1827-1835.
9 Williams J, Leamy M, Bird V, Le Boutillier C, Norton S, Pesola F, Slade M (2014)
Development and
evaluation of a measure to identify mental health service support for recovery (INSPIRE)
, Social Psychiatry
and Psychiatric Epidemiology. DOI 10.1007/s00127-014-0983-0.
10 Bird V, Le Boutillier C, Leamy M, Williams J, Bradstreet S, Slade M (2014)
Evaluating the feasibility of
complex interventions in mental health services: standardised measure and reporting guidelines
, British
Journal of Psychiatry, 204, 316-321.
11 Bird V, Leamy M, Le Boutillier C, Williams J, Slade M (2011)
REFOCUS: Promoting recovery in community
mental health services
, London: Rethink Mental Illness.
12 Grey B, Bailey S, Leamy M, Slade M (2014)
REFOCUS Coaching Conversations for Recovery. Trainer
Manual
, London: Slam Partners.
13 Grey B, Bailey S, Leamy M, Slade M (2014)
REFOCUS Coaching Conversations for Recovery. Participant
Manual
, London: Slam Partners.
14 Slade M, Bird V, Le Boutillier C, Williams J, McCrone P, Leamy M (2011)
REFOCUS Trial: protocol for a
cluster randomised controlled trial of a pro-recovery intervention within community based mental health
teams
, BMC Psychiatry, 11, 185.
15 Leamy M, Clarke E, Le Boutillier C, Bird V, Janosik M, Sabas K, Riley G, Williams J, Slade M (2014)
Implementing a complex intervention to support personal recovery: A qualitative study nested within a
cluster randomised controlled trial
, PLoS ONE, 9, e97091.
16 Slade M, Bird V, Chandler R, Fox J, Larsen J, Tew J, Leamy M (2010)
The contribution of advisory
committees and public involvement to large studies: case study
, BMC Health Services Research, 10, 323.
17 Slade M, Williams J, Bird V, Leamy M, Le Boutillier C (2012)
Recovery grows up, Journal of Mental Health
,
21, 99-104.
18 Tew J, Ramon S, Slade M, Bird V, Melton J, Le Boutillier C (2012)
Social factors and recovery from mental
health difficulties: a review of the evidence
, British Journal of Social Work, 42, 443-460.
Academic references

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