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									       SURE
Service User Research Enterprise


            Annual Report
              2003-2004



      Health Services Research
     PO 34, Institute of Psychiatry
         De Crespigny Park
          London SE5 8AF
THE COMMISSION FOR HEALTH IMPROVEMENT (CHI)




The South London & Maudsley Trust (SL&M) received a rating of excellence in
relation to research and effectiveness. SURE and CRAG were singled out as the
„notable practice‟ and this is what they had to say:



“The establishment of the service user research enterprise (SURE) and the
consumer research advisory group (CRAG) are both excellent examples of
how service users may participate in the research process in a structured and
equitable way”.




                                      2
                                       CONTENTS

                                                                   Page


Introduction                                                         5

Significant achievements                                             6

Background                                                           7

Mission Statement                                                    8

Staff                                                                9

Funding                                                             10

Governance, Information and Advice Sources                          11

Involvement of SL&M users in Research
at the Institute of Psychiatry and the Trust

       Involvement in the R&D Steering Group                       12

       Research training for service users                         13

       Open Meetings                                                13

       Networking                                                   13

Further SURE Involvement in the Institute and SL&M

       The SURE „Clinic‟                                            14

       Committee Work                                               15

       Contact with National Groups

Current national research projects

       Consumers Perspectives on ECT                               16

       Literature Review: User Involvement in Change Management
        In a Mental Health Context                                  16

       Users‟ and families experiences of continuity of care        17
        and relationship to health outcomes (ECHO)

       Young people, mental health and primary care                 18



                                        3
      Users Views of Cognitive Remediation Therapy   20


      Outcomes of Involuntary Admission              20

      GENDEP     ELSI                                21


New Proposals                                         23


SURE’s Strategy                                       25


Publications                                          27


Abbreviations page                                     29




                                    4
Introduction
SURE has written an Annual Report on our work for the last four years
showing our achievements and our current aims. This will be the last of our
formal annual reports as we hope to keep our web site up to date with new
findings and studies as well as on our success with grant proposals. We will
produce a formal report on our work every three years to fit in with the time
frame for renewal of our basic infrastructure. This report therefore covers the
period up to December 2004 and is an extension of the 12 month report. In
future, we will also publish a short annual newsletter for those, particularly
service users, who do not have access to the internet.

The unit has continued to go from strength to strength with continued interest
in our work from departments within the Institute of Psychiatry and also within
universities in the UK and abroad. Both Til Wykes and Diana Rose have
visited European countries to talk about SURE‟s work and we now have a
collaboration across nine European countries funded by the EU.


SURE has also grown over the past 18 months. We now have 10 staff and 7
projects. We have gained large amounts of grant income as well as
infrastructure support from the NHS Trust and the Institute of Psychiatry
directly. This has allowed us to change the structure of management to allow
us to have joint sharing of the management and strategy formally. Dr Diana
Rose is the Co-Director of SURE together with Professor Til Wykes. This
strengthens the joint working structure and emphasises the collaborations that
SURE fosters between clinical academics and service user researchers. Dr
Diana Rose will also take up a permanent position as Senior Lecturer in the
Institute of Psychiatry. Her post is based within the Health Services Research
Department.




                                       5
                   SIGNIFICANT ACHIEVEMENTS


1. Report on ECT affects DH– The Department of Health invited
   representatives of SURE to a meeting on criteria for compulsory ECT
   under new mental health legislation. When the draft Bill was published
   it was consistent with what SURE had to say in respect of ECT.


2. National profile – A SURE member of staff appeared on Radio 4‟s
   All in the MIND in October.


3. A notable practice – The Commission for Health Improvement picked
   out SURE and CRAG as excellent examples of how service users can
   be involved in research.


4. Local involvement in R&D
      a. The Consumers Research Advisory Group continues to ensure
         involvement of local people in decisions about research
         programmes

      b. A training course in research skills for local service users was
         successfully completed.

      c. The conference of local service users held in December 2002 to
         identify service users‟ priorities for research was written up into a
         user-friendly leaflet.



5. Weekly Advisory Service: the SURE ‘Clinic’ – this service, which
   advises clinical academics on how to involve service users in their
   research, has now been extended to the whole of the Institute.


6. International Profile: During the year, SURE started to raise its
   international profile. Lectures were given in Norway, Slovenia and
   Belgium. Future visits are planned in Europe to Munich as well as to
   Canada and Illinois in North America.

7. A collaborative structure: We now have an infrastructure of Co-
   Directors with Diana Rose, a service user researcher, and Til Wykes,
   a clinical academic, sharing the management of SURE




                                    6
BACKGROUND

All the main funding bodies in health, including mental health, (e.g. NHS R&D,
MRC, Wellcome Trust, ESRC) now require evidence of user involvement in
research proposals. The level and degree required varies between funding
bodies and between specific tenders from representation on Steering
Committees through to full involvement in the research process. NHS R&D
has a dedicated unit to facilitate this and the issue has been extensively
discussed in the pages of journals such as the BMJ. This is a very recent
development and the obstacles are not underestimated.

User involvement in research at the Institute of Psychiatry and SL&M began
before the current „paradigm shift‟ referred to above. This was largely through
the efforts of the Centre for Recovery in Severe Psychosis (CRiSP) which has
conducted two collaborative trials with service users and involved service
users on its Steering Group. Additionally, the Health Services Research
Department and the R&D Office convened a conference of service users local
to SL&M in May 2000. The conference was asked to identify service users‟
priorities for research and the top priority that emerged was full user
involvement in the research process. A further conference was held in
December 2002 .

The work of CRiSP and the results of the conference led to the establishment
of a group to discuss how service user involvement at the Institute and the
Trust could be taken forward. It was decided to set up the Service User
Research Enterprise (SURE) and the first co-ordinator was appointed at the
end of March 2001.

The initial brief for SURE was largely local to the Institute and the Trust.
However, because of the national context and the new interests of funders in
service user involvement in research nationally, this brief soon widened. This
is evident in this and previous Annual Reports.




                                       7
MISSION STATEMENT

SURE‟s core aim is to involve service users at all levels of the research
process in a collaborative way. It pursues this aim:

   1. Locally by identifying service users who are interested in research,
      finding out how and at what level they would like to be involved, and
      facilitating this in accordance with the aim of collaboration. We aim for
      this involvement to be meaningful and skill enhancing and to impact
      upon research in the Institute and the Trust.

   2. Nationally by tendering for projects relevant to established users‟
      priorities and with a substantial consumer involvement component.
      Where tenders are successful and posts are funded we aim for them to
      be filled by people with experience of using mental health services to
      build up the capacity of the unit and the presence of service user
      researchers at the Institute. Researchers who fill these posts are
      encouraged to register for higher degrees to further build their research
      capacity.

   3. By disseminating the way we work and the outcomes of our work to the
      widest possible audience. So, when we publish results of our research
      in academic journals we also publish them in formats and journals
      accessible to service users.

   4. Starting this year, we aim to raise our profile internationally as well as
      locally and nationally. We believe ourselves to be unique in the
      academic world and in an excellent position to raise the profile of user-
      led and collaborative research globally.




                                       8
SURE STAFF

Professor Til Wykes       Co-Director

Dr Diana Rose             Co-Director

Pete Fleischmann          Researcher / Consultant

Angela Sweeney            Research Worker

Simon Clarke              Research Worker

Rajinder Sidhu            Research Worker

Jasna Russo               Research Worker

Carey Ostrer              Administrator

Liz Hutt                  Business Manager

Alison Faulkner           Consultant Trainer

Tanya Graham              Attached to SURE via Dept. of
                          Primary Care




                      9
                                      FUNDING
                    Total New Grant Income Generated 2003-2004
                                     £1,024,206




                                                                   SLAM R&D Funds
                                                                   INVOLVE
                                                                   GENDEP direct to SURE
                                                                   Best Evidence
                                                                   Inpatient Alternatives



                Current Total Grant Income to December 2004
                                 £7,017,375


The infrastructure is still underpinned by a grant from the South London and Maudsley NHS
Trust but in this last year we have also had further support for a new Co-Director from the
Institute of Psychiatry and Health Service Research Department. This will come into effect on
April 1st 2005. New grant income in the form of collaborations with other departments both
within and outside the Institute of Psychiatry has continued to grow with the majority of projects
falling into the priorities of local service users.




                                                                  Continuity of Care (DOH)
                                                                  GENDEP (EU)
                                                                  INVOLVE
                                                                  SLAM R&D Funds
                                                                  Best Evidence
                                                                  Primary Care (DOH)
                                                                  Inpatient alternatives




                                            10
             Governance, Information and
                   advice sources
       Governance arrangements
                                                                         Advice sources


                                                                          National Research
                                                                              Priorities

                                                                          Institute Research
            IOP/Kings College
                                                                              Committee
              management
                                                                             SLAM R&D

           HSR Department
                                                                          SURGE/MHRN

             Co-directors                                                 Sure Research
                                                                             interests
                                                                           Service user
             SURE admin                                                     conference
            & research staff
                                                                               CRAG




Information is provided to SURE from a number of sources that are highlighted in
the figure above. These sources of information guide the approaches taken by
SURE on specific projects and on the sorts of projects in which we choose to
participate. These choices are also affected by resource constraints both internal to
SURE and external in the funds made available from grant agencies.




                                       11
INVOLVEMENT OF SL&M USERS IN RESEARCH AT THE INSTITUTE OF
PSYCHIATRY AND THE TRUST


1. The Trust R&D Steering Group and the Consumers’ Research Advisory
Group (CRAG)
The SL&M/IOP Research and Development Steering Group (R&D SG) is
responsible for managing SL&M‟s research and development activity. As
such it is an extremely powerful and influential committee in terms of both
defining and implementing SL&M‟s research priorities.

Meaningful user involvement in this kind of committee is very rare and the
Trust R&D Committee has provided a budget to overcome some of the pitfalls.
To avoid an unstable arrangement that depends on one or two individual
users and which could be open to accusations of tokenism, the Consumers‟
Research Advisory Group (CRAG) has been established. This group has
been meeting for three years and has two interrelated functions: to facilitate
and support user involvement in the R&D SG and to identify local users‟ views
about research. The CRAG consists of up to twenty local users and currently
has members from Southwark, Lewisham, Lambeth and Croydon as well as
the Addictions and Older People‟s Directorates.

Two CRAG members attend meetings of the R&D SG with a member of
SURE staff. Diana Rose is a full member of the R&D SG with Pete
Fleischmann as nominated deputy given the special circumstances of the
CRAG representatives. These representatives are selected from the CRAG
and rotated bi-annually. The CRAG is intended as both a support and
reference group for the representatives. The whole group meets regularly and
discusses the agendas and papers for each meeting of the R&D SG. Then the
representatives attend the meeting. This structure is intended to provide
consistent and accountable user representation.

In 2003-2004 representatives accompanied by Diana Rose or Pete
Fleischmann attended several meetings. Prior to each R&D meeting, Gill
Dale, assistant director of R&D, briefs the CRAG on the meetings. She then
withdraws to allow the CRAG members to discuss their contribution to the
R&D meeting.

In December 2002, a conference was held entitled “Straight from the Horse‟s
Mouth”. Following the conference visits were conducted to four local user
groups with the aim of gathering more user views on research priorities. A
further group submitted written information. A draft statement of users‟
research priorities was presented to the R&D Steering Group in June 2003. A
report of the conference was provided in a user-friendly format and a paper
has been submitted to a peer-reviewed journal.

A further conference, on medication, was held in October 2004. It was called
“It‟s Medication Time” and was intended to identify users‟ priorities for
research on the subject of medication. This topic was chosen because it had
been high on the list of priorities established at the previous conference. The


                                       12
meeting was very successful with over 70 local users attending. We are now
in the process of analysing and writing up the results of the medication time
conference.



The future
In the coming year, we will consolidate the CRAG further. We also intend to
make more visits to local user groups in terms of attending AGMs and
meetings to talk about SURE.


2. Research Training for service users
Part of SURE‟s initial brief was to provide training in research skills for service
users (and clinical academics). The first course was conducted by an
independent trainer, Alison Faulkner. The second course took place at the
end of 2003 and the beginning of 2004. It was a weekly, 12 session course,
and this time there was a mix of clinical academics from HSR and service
user researchers conducting it. Six local service users successfully
completed the course. One of these has gone on to be involved more closely
with research at the Institute.


The future
We are planning to run the course again without too many changes. We will
aim for a higher intake this time. The course will start again in March 2005.


3. Open Meetings
It is part of SURE‟s remit to involve as many local service users as feasible in
research in the Institute and SL&M and to build the capacity of local users to
be involved in a way that is meaningful to them. We have held two meetings
for service users to provide information and to disseminate our work. These
meetings are lively and not without controversy.

The future
We will continue to hold Open Meetings for service users local to SL&M.
Through coverage in the local press, we hope, in the future, to contact service
users who are not in touch with organised groups but may be interested in
involvement in research. In case such service users are not able to attend
meetings during the day, we aim from now on to hold one meeting per year in
the evening.


4. Networking
It is important that SURE keeps in contact with local users and their
organisations so this year we have kept up our programme of visits to local
groups and individuals. Following these contacts we provide a newsletter –
SURE Update – in order to let service users know what our current progress
has been. Six issues of the newsletter have now been produced although


                                        13
pressure of work has slowed publication this year. Nonetheless, circulation
has grown considerably as people have requested it either through direct
contact (eg at the Open Meetings) or because they have heard about it from
others.

The future
Pete Fleischmann will continue to be given dedicated time to work on what
local service users and their organisations want from research.



FURTHER SURE INVOLVEMENT IN THE INSTITUTE AND SL&M


1. The SURE Clinic
SURE receives constant requests for advice concerning research projects
either at the proposal stage or whilst they are in progress. SURE cannot
usually become involved directly as collaborators in these projects but we do
provide advice. To make this process more efficient and fair, we have set up
the „SURE Clinic‟.

Begun in March 2002, the SURE „Clinic‟ runs each week on Monday
afternoons. The object of this service is to give colleagues from the Institute
of Psychiatry advice on how they can meaningfully and fruitfully involve
service users in their research. As stated in the background to this Annual
Report, such involvement is now virtually a funding imperative but SURE will
not „rubber stamp‟ proposals simply to increase the likelihood of funding.

The SURE „Clinic‟ was initially envisaged as a walk-in service for our
colleagues in the Health Services Research Department. In 2003 we
extended it to the whole of the Institute and it became clear that it would have
to be an appointment-only service as it was proving very popular. In 2003-4
we received requests for advice from nearly all departments at the Institute.

The kinds of advice offered vary. Some questions are very simple but in other
cases it may be decided that further discussion is needed if a colleague
wishes SURE to be actively involved in their research. This entails not only
issues of how to involve users, appropriate designs, methodologies and forms
of dissemination but also financial negotiations.

Diana Rose and Angela Sweeney currently staff the SURE Clinic. A database
is kept of all enquiries.

The future
The SURE Clinic will continue to operate. We try to keep enquiries for
Institute researchers only but this has proved very difficult. In the period
covering this Annual Report we had several enquiries from SL&M personnel,
which seem appropriate, but also enquiries from interested people from all
over South London.



                                      14
2. Committee work
As well as being represented on the Trust R&D committee, SURE has
positions on other committees. The committees where we are represented are
ones where we hope to raise the profile of service user interests in research.

Health Service Research Committee gives small grants (up to £10,000) to
groups traditionally under-represented in research. In the past, these have
been understood as groups of staff such as nurses, counsellors and
occupational therapists. But recently the committee decided that proposals
should also be sought from service users with help from established
researchers. The CRAG is preparing a proposal to submit to this committee.
Diana Rose is a member of the Committee

Maudsley Debates Organising Committee arranges debates on topical
issues. Both Til Wykes and Diana Rose are members.

The future
It is not envisaged that SURE will be represented on any further committees
either within the Trust or IoP until it is clear that there is capacity for this
administrative work.


3. Contact with National Groups of Service User Researchers
SURE continues to take a role in national groups of service user researchers
and groups that have a high level of service user involvement. In order to
streamline this activity SURE has a policy of sharing representation at various
meetings with feedback to the wider group at a later stage. The main groups
are: the Survivor Research Network, the Toronto Group, the Social
Perspectives Network and the Service User Research Group for England
(SURGE). SURGE is part of the Mental Health Research Network for
England (MHRN) and Til Wykes is Director of this Network.


The future
As well as continuing to attend these groups, we will be contributing to papers
and books which they are writing.




                                        15
CURRENT NATIONAL RESEARCH PROJECTS AND NEW
DEVELOPMENTS ON COMPLETED NATIONAL RESEARCH PROJECTS


1. Review of Consumers’ Perspectives on ECT

Diana Rose, Pete Fleischmann, Til Wykes and Jonathan Bindman

As detailed in our last two Annual Reports, this Review was commissioned by
the Department of Health and ran in parallel to a meta-analysis of the
effectiveness and safety of ECT conducted by John Geddes and colleagues.
Last year saw the review influencing the new guidelines on ECT drawn up by
NICE. This year we were invited to a Department of Health meeting on
criteria for compulsory treatment on ECT designed for proposed new mental
health legislation. When the new Bill was published, it was consistent with
what SURE had to say on criteria for compulsory treatment.

During the year, a paper on this work was published in the BMJ. As far as we
know, this is the first user-led work to reach the international peer-reviewed
literature. We also gave numerous presentations to both professional and
user audiences.

The future
We will continue to promote this work, including to professional bodies. We
will seek to disseminate it further both in the peer-reviewed literature and in
journals read by service users. We will also continue to give presentations.
From the feedback we have had, the perceived importance of this work will
not diminish.

2. Literature Review: User Involvement in Change Management in a
Mental Health Context

Grant holders: Diana Rose, Fran Tonkiss (Goldsmith‟s College), Til Wykes

This literature review was completed in November 2002. It was
commissioned by the Service Development and Organisation arm of the
Department of Health. In 2003 the full report appeared on the SDO website.
In addition, an „expert communicator‟ was commissioned to write a briefing
paper for managers on how to successfully involve service users in change
management in their organisations. The briefing paper is available in glossy
paper format and online at:

http://www.sdo.lshtm.ac.uk/publications.htm


The future
We are confident that the briefing paper will have an impact on managers
seeking meaningful user involvement in managing change in their
organisations. For those interested, the paper version of the full report is
available from SURE.


                                       16
3. Users' and carers' experiences of continuity of care and relationship
to health outcomes (ECHO) (jointly with St George’s Hospital Medical
School)


SURE Grant holders: Dr Diana Rose, Professor Til Wykes

Researcher: Angela Sweeney

Project background:
This project is a collaboration between St George‟s Hospital Medical School
and SURE funded by the Service Delivery and Organisation (SDO) branch of
NHSE R&D. SURE‟s role has been to discover what experiences and
perceptions users and carers hold of continuity of care. This information has
been used to create questionnaires that measure users‟ and carers‟
experiences of continuity of care from their own perspectives. The team at St
George‟s, headed by Professor Tom Burns, is currently using the
questionnaires as a measure of experienced continuity as part of their
investigation into the relationship between continuity of care and health and
social outcomes.

Background and Previous Work (April 2002 – April 2003)
In our last Annual Report we described a series of 4 focus groups with users
and 2 with carers which were held across South London, preceded by two
pilot groups. All groups met twice making a total of 16 focus groups.
Participants were recruited largely from user and carer groups and to a lesser
extent from CMHT‟s. The initial groups explored people‟s experiences of
services and their perspectives on aspects of continuity of care. Follow up
groups were held between one and three weeks later with just one drop out in
each of the user and carer strands. The interpretation of the round one
analysis was checked and discussed, followed by a ranking exercise of
elements of continuity of care as defined by academics and managers
alongside user/carer elements generated in the first group. All sources of data
were then analysed electronically, leading to the initial drafting of the
questionnaires. Expert panels consisting of research participants then
commented on the drafts‟ contents and language and selected preferred
topics and statements based on previous discussions and experiences.
Further panels were held with users and carers who had no previous
connection with the research process. Finally, a feasibility study was
conducted with 37 users and 30 carers.


Work in the current period (April 2003 to December 2004)
In the period covering this Annual Report, the measures generated by users
and carers on their perceptions of continuity of care started to be used by the
St George‟s team. The plan is to interview 200 people with a diagnosis of
psychosis. As far as we are aware, it is very rare for outcome measures to be
constructed by users and carers themselves as has been done here.


                                      17
A full plan for psychometric analyses of the measures, spanning both
quantitative and qualitative dimensions, was developed during the year and
this psychometric analysis was begun. In addition, the researcher looked at
some of her data in more depth using a grounded theory approach. She was
able to show how certain issues – the most important one was „fear‟ – were
significant preoccupations for both service users and carers.

In addition to the project, the main continuity of care researcher (Angela
Sweeney) successfully registered for a PhD in the Health Services Research
Department. The above methodology was written up as a chapter and the
outlines of a paper developed by Diana Rose. Both a paper and a PhD
chapter on the development of user research were written. A full literature
review of continuity of care was undertaken and completed.

The future
The continuity of care study is a longitudinal one and users and carers will be
interviewed at three points in time to establish the relationship between
continuity of care and health and social care outcomes. The full study is due
to end in 2007 and SURE will be involved throughout.

For more information please contact Angela Sweeney either on 020 7848
5097 or a.sweeney@iop.kcl.ac.uk



4. Young people, mental health and primary care (lead grant holder
Professor Andre Tylee, Department of Primary Care, Institute of Psychiatry)

SURE lead: Diana Rose. SURE Grant Holders: Til Wykes and Diana Rose

Researcher: Tanya Graham

This project is part of a programme of research into primary care
commissioned by the London Regional Office of the NHSE. The brief for the
programme included a specific remit for consumer involvement and building
the research capacity of consumers (and primary care practitioners).

The project investigates who young people think is the most appropriate
source of help should they experience mental health problems or „stress‟. It
attempts to find out how appropriate they feel GPs are as a source of help and
if not, why not. This data will be used to develop a set of user-produced
quality standards for primary care practitioners.

Since April 2003, fourteen focus groups have been conducted with the
following groups of young people aged 16-25 years old: sixth formers,
students, young people living in supported housing, African-Caribbean young
men, young Asian women, and employed young people. At least half of the
young people had experienced a mental health problem for which they may
had approached their GP. Establishing a young persons‟ experience of mental


                                       18
health problems and generating an open discussion about this was a
challenging process that proved difficult for some groups. Each focus group
was facilitated by the researcher (who has experience of counselling) and co-
facilitated by a young service user. To prepare them for this role, six young
service users were recruited from GP surgeries and trained in co-facilitation
skills by the project team. The focus groups explored young people‟s views
and experiences of primary care mental health services. Follow up groups
were held within two weeks. Preliminary analyses were performed on the
transcripts from each group and the results fed-back to the participants to
ensure respondent validation.

After the focus groups were completed, the researcher undertook a more
detailed analysis which included calculating inter-rater reliability between the
researcher‟s coding of focus group transcripts and that of young service
users‟. We are now in the second year of the project and some of the original
co-facilitators and focus group participants continue to be involved.

In the next stage of the project, young service users were invited to develop
statements of good practice from the focus group data analysis. After this, a
pilot group of young service users was recruited to discuss the clarity and
validity of each statement and test the feasibility of using a nominal group
technique with young people. Once this was completed a separate Youth
Expert Panel of young service users was recruited to rank each of the
statements produced in order of importance. Statements of good practice that
the group agreed upon were developed into a set of quality standards for use
in primary care services during fourth year of the project. The researcher is
also developing the project for a higher degree.

SURE‟s role in this project is to build research capacity among young
consumers of mental health services. This will involve part-supervision of the
Researcher‟s higher degree, further training of the Researcher in consumer-
focussed research and supporting the Youth Expert Panel (see above) in the
research skills needed to complete their tasks. The project started in April
2002 and is funded for four years.

The future
The researcher will now undertake a detailed analysis of her transcripts to
understand what the issues are for young people when they seek or do not
seek help and whom they are most likely to seek it from.


For more information please contact Tanya Graham on 020 7848 0906 or
email at t.graham@iop.kcl.ac.uk




                                       19
5. Users views of Cognitive Remediation Therapy (jointly with CRiSP)

Diana Rose and Til Wykes

As described in the last Annual report, this project aims to discover what
service users think of a novel psychological treatment to improve memory and
attention. Service users who have received therapy were facilitated to draw up
a questionnaire about satisfaction with the therapy and two of this group were
then trained to be research interviewers. This is a complementary study to the
Randomised Control Trial of CRT funded by the Department of Health (UK).
In 2003 the data collection phase was completed, the data analysis was
begun and this has now been combined with data from the trial.

The future
We aim to finish this project in 2005 and disseminate it to both academic and
user audiences. The two recipients of CRT who carried out the interviews will
be named as authors on all papers.

6. Outcomes of Involuntary Admission to Hospital (the InvolvE project)

Lead Grant Holder; Professor Stephan Priebe, Queen Mary and Westfield
University, London

SURE leads: Professor Til Wykes and Dr Diana Rose

Researchers: Rajinder Sidhu and Simon Clarke

The InvolvE project, supported by the Mental Health Research Network and
funded by the Department of Health, began at SURE in May 2004. Its design
corresponds to a previous European project named EUNOMIA. The England
study started in East London in February 2004 and subsequently at 3 other
sites between May and July 2004 for 32 months. The studies‟ four sites are
the original one in East London and three sites attached to the Mental Health
Research Network „hubs‟ in Bristol, Manchester/Liverpool and South
London/Surrey. This last site is the responsibility of SURE.

The study aims to provide empirical evidence about the practice of involuntary
hospital admissions, its outcomes, and the predictors of outcome in England.
The data is intended to facilitate a rational and constructive debate on the
controversial topic of coercive hospital treatment and inform attempts to
improve practice. Moreover, the findings will be used as a baseline to evaluate
the effects of changes in legislation in the future and allow comparisons with
other countries. This is achieved with the use of questionnaires completed by
sectioned patients at 4 points in time from the date of being sectioned. At
each „hub‟ site a sample of 220 patients will be recruited. A retrospective
assessment of the extent to which the involuntary treatment was or was not
thought to be justified by the patient will be taken as the primary outcome
criterion. Other outcome criteria are treatment satisfaction, symptom change,
use of services after discharge (if applicable) and quality of life scores.



                                      20
The study uses three similar questionnaires, administered by researchers at
four points of time in the patient journey from sectioning. These are within the
first 7 days (in exceptional cases 10 days) after sectioning, (T1), 4 weeks after
admission (T2), and 3 months after admission (T3) and one year after
admission (T4). The interview schedules are quantitative and will be
complemented by qualitative interviews with both patients and carers to
ascertain in detail what patients and their carers think about their detention
and compulsory treatment.

The role of SURE will be to conduct the South London/Surrey arm of the
study, working in three trusts; Surrey Oakland‟s, East Kent and West Kent and
will run over an initial period of 14 months. The project for SURE is based on
the recruitment of participants from rural and semi-rural locations to allow for a
geographical comparison of service perceptions and experiences between
each „hub‟ site. As with all sites, there will be the use of a service user
researcher as well as a non-service user researcher and the effect of this will
be examined as part of the overall study. The Mental Health Research
Network is supporting the study and its co-ordination is to be shared between
the Mental Health Research Network and the Unit for Social and Community
Psychiatry at Queen Mary (University of London).

So far, the SURE team have recruited 180 participants in their first week of
sectioning and the follow-up interviews have shown a good retention rate.

The future
It is anticipate that the SURE team will reach its target of 220 participants in
May 2005. We are confident also of reaching the target of 80 at T3. The
analysis for the quantitative interviews will be conducted at the Unit for Social
and Community Psychiatry at Queen Mary‟s College in London.

 Once the T3 interviews are complete the semi-structured, qualitative
interviews will begin. These will be conducted with a total sample of 40-48
patients and carers (approximately 10-12 each per site), who will be selected
from the main sample (or their carers respectively). The outcome from all
stages will be compared between sites and between different patient groups
across sites. The in-depth interviews will be subjected to thematic content
analysis drawing on some elements of grounded theory. This analysis will be
done jointly at SURE and Queen Mary‟s.

7. The Ethics of pharmacogenetic tailored treatments for depression
(GENDEP)

SURE grant holders – Diana Rose and Til Wykes in collaboration with the
London School of Economics

Researcher: Jasna Russo

This study is funded by a grant from the EU 6th Framework Programme. It
runs alongside a nine-country trial which will investigate whether anti-



                                        21
depressant medication can be tailored to an individual‟s genetic make so as to
reduce side effects and increase the efficacy of anti-depressants.

SURE, together with the BIOS centre at the London School of Economics, has
been commissioned to look at the Ethical, Legal and Social Implications
(ELSI) of pharmacogenetics. The funders insisted that the study should have
this ELSI component given the controversial nature of the topic under
investigation.

The SURE part of the work began right at the end of the period covered by
this Annual Report, in December 2004. The first part of our work will involve
interviewing participants in the trial to establish their understanding of
informed consent and what they believe they have consented to. Secondly
we will investigate the views of users and user groups more generally on
tailoring psychiatric medications to an individual‟s genetic profile. This work
will involve structured questionnaires, semi-structured interviews and focus
groups. We will be working in four European countries including one of the
newly acceded countries. Our research worker is fluent in three European
languages.




                                       22
NEW PROPOSALS

In our Annual Report for 2002-2003 we stated that we wished to consolidate
SURE‟s current workload and be careful about taking on new projects. As
seen above, this has proved not possible and this is testament to SURE‟s
growing reputation as a cutting edge user and collaborative research team. In
addition to the 2 new projects outlined above we are involved in another four
which will begin in 2005.

1. The Alternatives Study (TAS)

SURE lead: Diana Rose

This study is designed to investigate the extent and efficacy of alternative in-
patient services compared to traditional in-patient care. The study is due to
start in January 2005. It will involve a mapping exercise of all residential
alternative in-patient services in England as well as qualitative interviews with
people who have experienced both traditional and alternative in-patient care.
There will be two researchers and SURE‟s role will be to assist in the
supervision of one of them.



2. BEST – BEST evidence summaries in mental health

SURE Grant Holder: Til Wykes

This is a two-year collaboration within the HSR department with Rachel
Churchill. The project is designed to provide both mental health service users
and health care professionals with summaries of the best evidence on
treatments in mental health. SURE‟s involvement will ensure that there is also
a service user driven part of the project.



3.Services for People with Personality Disorder

SURE Grant Holder: Diana Rose

This study is designed to evaluate a new form of service provision for people
with personality disorder. The Department of Health has set up three new
units for such people and it is these which the study will evaluate. The
evaluation includes interviews with service users and it is envisaged that
these will be carried out by a service user researcher. SURE will co-
supervise this researcher.




                                       23
4. Users and Carers Define Partnership Working

SURE Lead: Diana Rose

This project, in collaboration with Glasgow University, is due to begin in May
2005. Glasgow University have already conducted focus groups with service
users and as a result of these have drawn up an interview schedule. SURE
will identify three services with full integration between health and social care
and interview twenty clients for each service.




                                        24
                                    SURE’s Strategy

       Types of Research

       The figure below shows the projects in which we are currently involved. They
       are grouped under three main headings. There are clearly more projects
       under the national heading and this is because we have acquired funding to
       support our work through national funding opportunities. However, we have
       been involved with local groups and have developed some ideas that have
       been funded.

       Our medium term strategy is as follows:
          Increase local service user involvement in collaborative research
          Increase collaborations to other Institute departments than HSR
          Increase national collaborations outside the Institute of Psychiatry
                o Both service user and clinical academic collaborations

             STOP – writing proposals not fulfilling the above
             ONLY – two new projects (black font In Fig 1 below) in each category
              for 2005-2008

             Investigate part time user consultancy to increase capacity



                                          Figure 1:
                                 Types of research

       National priorities                                           Local priorities




                                      Local service user
                                        collaborations
• Continuity of care                                                    Scoping for SSRIs
• Primary care                                                         • Best evidence
• ECT review                       • CRT satisfaction                        Programme
• Change management                • Project on change                  Alternatives to
                                                                          inpatient treatment
• Ethics of genetic testing         management
                                                                        Two further projects
•InvolvE                            One further project
•GENDEP ELSI
•Two further projects




                                             25
                    Figure 2
              SURE Structure in 2008


                               Leadership




                                 RA          Administration        Service
         RA
                                            2 post part time          user
                                                                    liaison


    RA
                          RA     RA     RA


         RA     RA   RA
                                                               Total 14 staff



   Investigate senior management support (see Figure 2) to increase the
    number of staff and the level of staff support in the unit




                                      26
PUBLICATIONS


Castle, Copolov & Wykes (eds) (2004) Psychosocial and pharmacological
rehabilitation for schizophrenia, 2nd edition Martin Dunitz.

Copperman, J., Ferns, P., Tew, J., Keating, F., Wallcraft, J., Sweeney, A.,
Alsop, P., Castillo, H., Hatzidimitriadou, E., Harris, A., Glynn, T., Wells, S. et
al. (2003) SPN Paper 4: Where you stand affects your point of view.
www.spn.org.uk/index.php?id=739

Gray, R., Wykes, T. and Gournay, K. (2004) The effect of medication
management training on community mental health nurse's clinical skills.
International Journal of Nursing Studies. 40, 163-169.

Fleischmann P., Rose D. and Wykes T. (2003) Life saver or memory eraser?
User dissatisfaction with ECT. Openmind.

Knight M., Wykes T. & Hayward P. (2003) “People don‟t understand”: an
investigation of stigma in schizophrenia using Interpretative
Phenomenological Analysis (IPA) Journal of Mental Health 12:209-222.

Penn D. and Wykes T. (2003) Stigma, discrimination and mental illness
Journal of Mental Health 12:203-208.

Philpot, M., Collins, C., Trivedi, P. Treloar, A., Gallagher, S. and Rose, D.
(2004) Eliciting users' views of ECT in two mental health trusts with a user-
designed questionnaire. Journal of Mental Health, 13, 4, 403-414.

Rose, D. (2003) Partnership, Co-ordination of Care and the Place of User
Involvement. Journal of Mental Health 12:59-71.

Rose, D. (2003) Collaboration between users and professionals in research:
peaks and pitfalls. Psychiatric Bulletin, 27: 404-406

Rose, D. (2003) Having a diagnosis is a qualification for the job. BMJ, , 326,
1331.

Rose, D. (2004) Telling different stories: user involvement in research.
Research, Policy and Planning, 22, 2, 23-30.

Rose, D., Wykes, T., Leese, M., Bindman, J. and Fleischmann, P. (2003)
Consumers‟ Perspectives on Electroconvulsive Therapy (ECT): A Systematic
Review. BMJ, 326: 1363-6

Rose, D., Fleischmann, P. and Wykes, T. (2004) Consumers‟ Perspectives on
ECT: A Qualitative Analysis. Journal of Mental Health, 13, 3, 285-294.




                                         27
Wykes, T.(2003) Reducing discrimination: Review of children‟s books with a
mental health theme. Journal of Mental Health, 12, 307-331.

Wykes T. (2003) Non-Pharmacologic Adjunctive Treatment of Cognitive
Dysfunction. In: Improving Cognitive Function in the Schizophrenic Patient 2nd
edition (R. Keefe, ed) Science Press.

Wykes T. (2003) Blue skies in the Journal of Mental Health? Consumers in
research. Journal of Mental Health, 12, 1-6


Wallcraft J, Read J, Sweeney A. (2003) On Our Own Terms: Users and
survivors of mental health services working together for support and change.
London: SCMH.

Rose, D., Wykes, T., Bindman, J. and Fleischmann, P. (in press)
Information, consent and perceived coercion: Consumers‟ views on ECT.
British Journal of Psychiatry.

Rose, D. (in press) Review of Abnormal by Michel Foucault. British Journal
of Psychiatry

Thornicroft, G. and Rose, D. (in press) Health services research: is there
anything to learn from mental health. Journal of health Services Research and
Policy.




                                      28
Abbreviations


CHI                 Commission for Health Improvement
CRAG                Consumer Research Advisory Group
CRiSP               Centre for Recovery in Severe Psychosis
DH                  Department of Health
ESRC                Economic and Social Research COuncil
HSR                 Health Services Research Department at the Institute of
                    Psychiatry, Kings College London
IoP                 Institute of Psychiatry, Kings College London
MHRN                Mental Health Research Network
MRC                 Medical Research Council
NHS R&D             National Health Service Research and Development
NICE                National Institute for Clinical Excellence
NIHME               National Institute for Mental Health England
R&D SG              Research and Development Steering Group at the
                    Institute of Psychiatry, Kings College London
R&D                 Research and Development
NCC SDO             National Co-ordinating Centre for Service Delivery and
                    Organisation (branch of DH)
SL&M                South London and Maudsley Trust
SURE                Service User Research Enterprise
SURGE               Service User Research Group for England


Research Projects


CRT                 Cognitive Remediation Therapy
ECHO                Experienced Continuity and Health Outcomes
ECT                 Electroconvulsive Therapy
SSRIs               Selective Serotonin Reuptake Inhibitors (anti-
                    depressants)
YEP                 Youth Expert Panel
InvolvE             Outcomes of Involuntary Admissions
GENDEP ELSI         Genetics of Depression: Ethical, Legal and Social
                    Implications




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