A teaching trust of Brighton
and Sussex Medical School
ResearcHmagazine
Dedicated to mental health research
Centre for
Dementia Studies
Transforming
psychosis services
for young people
Grant awarded to
research hot topic:
CBT for psychosis
Issue 4 - 2014
Increasing research
opportunities: OCD,
PTSD and voices
The OCD Clinic Team:
ensuring our treatments are state-of-the-art
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Message from Lisa Rodrigues CBE
Chief Executive, Sussex Partnership NHS Foundation Trust
This is the last time I will introduce this magazine, so I feel reflective. Six years ago, we
achieved teaching and foundation trust status. We started investing carefully in clinical
research to support the development of our services. Because of our decision to engage
in high quality research, the insights we have gained are changing the lives of patients at
Sussex Partnership and across the country. We will celebrate at our conference on 12 June
2014. I know that Sussex Partnership and our academic partners will never compromise
in placing patients and their families at the heart of research design and priorities. Thank
you to everyone involved; you are just wonderful.
Developing our research culture
“As a relatively new department we were delighted to win the Health Service Journal Award in
November for our Clinical Research Impact.
The award gave us a mandate to continue innovating as we take our current communications, engagement
and translational initiatives to the next level. These initiatives will ensure that research becomes everyone’s
business and our research findings can influence the services we provide. Since the award we have received
several invitations to meet with colleagues across the country. We will seize these opportunities to both share our
experience and learn more about how to translate research findings into practice and maximise the quality of our
treatments and services.”
Dr Mark Hayward, Director of Research, Sussex Partnership NHS Foundation Trust.
Contents
Developing our research culture
03
Research and Development news
04
Conference and event update
08
Events programme09
The Research Network10
Involvement12
Increasing research opportunities: our clinics 14
Centre for Dementia Studies
16
Turning our research into practice
18
Update from our clinical research units
22
Own account funding24
The last six months has been breathtaking! Winning the HSJ award, working
with our professors to generate funding
for ground-breaking research studies,
developing Research Clinics with
clinicians that will translate evidence
into practice, and collaborating with
other directors to plan the future
strategy for research and education. Phew!
But my highlight of the past six months has been working
with patients. I have been working as a therapist in one
of our trials of psychological therapy and it’s been a
privilege to learn with and from the people who use our
services. The courage and resilience that people display
as they cope with adversity and embark on journeys of
recovery is also breath-taking. I love being a clinical
researcher!
Dr Mark Hayward, Director of Research,
Sussex Partnership NHS Foundation Trust
Produced by;
Research and Development,
Sussex Partnership NHS Foundation Trust,
Sussex Education Centre, Mill View Hospital,
Nevill Avenue, Hove BN3 7HZ
T: 01273 265896
E: [email protected]
W: sussexpartnership.nhs.uk/r-and-d
There is a lot of information in here and it has been
summarised to give you a flavour of the research
going on within Sussex Partnership - if you need
anymore detail, please contact:
[email protected]
Look out for Issue 5 at the end of 2014
We welcome your feedback. if you have any
comments or suggestions, please contact
Paula Bellers: [email protected]
2
Dedicated to Research
It is so brilliant to be reminded of
the breadth of our research activity
described in this issue of our Research
Magazine. We need to celebrate
success this year and continue to grasp
the challenge of making research
meaningful to our practice, to improve
quality and patient experience.
As the lead for Research on the Executive Team I want to
use this opportunity to express my personal thanks to
Lisa for her part in our research journey. I have always
found Lisa’s enthusiasm and insight of great support.
The task of embedding research within the NHS is
much harder if the Board and our senior leaders do not
understand the vitality of research and its link to the
delivery of good quality care and improving patient
experience. Lisa has helped us pave the way.
With grateful thanks,
Dr Kay Macdonald, Clinical Academic Director,
Sussex Partnership NHS Foundation Trust
Our research culture has four vital and integrated strands:
1) Patients
Ensuring patients have the opportunity to be meaningfully involved in the
design, delivery and translation of the highest quality research.
The full engagement and involvement of our patients ensures that our research
activity is grounded in the needs and perspectives of people who use our services.
See more about our Research Network and involvement in research on pages 10-13
2) Design
The design of high quality studies which address the needs of our patients.
We have been awarded one million pounds to date and aim to attract more
significant levels of funding to support our programmes of research that
explores how to live well with dementia and the well-being of young people.
See more about our Centre for Dementia Studies on pages 16-17, details about
newly funded research on pages 6-7 and own account research on page 24
3) Delivery
The delivery of high quality research as we seek to maximise recruitment to our
own local studies and studies that are instigated elsewhere in the UK and
globally.
See page 4-5
4) Translation
The translation of research as we ensure that lessons learned from studies
influence our practice and the services we provide.
See our Research into Practice section on pages 18-21
www.sussexpartnership.nhs.uk/r-and-d
3
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Research and Development news
Changes streamline research delivery
The National Institute of Health Research
(NIHR) has been streamlined – from 102 to 15
regional networks.
Thank you to staff and patients getting involved in our research
Three Sussex Partnership studies
in recruitment top 20
Three of Sussex Partnership’s studies were in
the top 20 recruiting National Institute of Health
Research (NIHR) studies from within the Sussex
and Surrey Comprehensive Local Research
Network (CLRN) region at January 2014.
This list is taken from all research areas, including cancer,
diabetes and primary care:
1. Our Joint Hypermobility study is our top recruiting
study and hit its recruitment target of 400 participants.
This study led by Dr Jessicca Eccles explores the link
between double jointedness (hypermobility) and anxiety,
with a view to improving ways of treating anxiety.
Preliminary results from the study have found that
more psychiatric patients than you would expect have
hypermobile joints (about 40% compared to 15% of the
general population). This seems to be true for almost
all psychiatric conditions except psychotic disorders.
There are particularly high rates in anxiety and
depression. Interestingly there are also very high rates
in ADHD, Autism Spectrum Conditions and Eating
Disorders. This is completely novel information in the
field. We have also found that psychiatric patients
regardless of diagnosis have considerably more physical
problems than the general population and particularly
with dizziness, fainting and palpitations. This suggests some dysfunction of the flight or fight
nervous system and may go some way to explaining
psychiatric conditions such as anxiety, which is common
to most diagnoses. We have presented this work at
international conferences and a paper is currently under
review
2. A critical analysis of the mindfulness agenda in Sussex
(197 participants). This study led by Kate Spiegelhalter
explores how mindfulness therapies can be communicated
to clinicians so they can make informed referrals for
their patients. It also explores how participation on a
mindfulness course and ongoing mindfulness practice
affects these referral patterns: ie, if staff have studied
or practice mindfulness, are they are more likely to
recommend mindfulness as a therapy for patients?
3. s136 detention rates across Sussex (212 participants).
This study led by Professor Gillian Bendelow looks at the
detention rates of individuals who might cause harm
to themselves or to others. It builds on these statistics
by conducting qualitive (and quantitative) research
regarding the outcomes of these detention, with a view
to suggesting other crisis interventions.
Improving information for people
with bipolar disorder (IBiD)
The IBiD study responds to a need to enhance
the quality of information provided for people
taking medication for bipolar disorder.
It is funded by the National Institute for Health
Research as part of its Research for Patient Benefit
programme and led by Professor Rob Horne, Centre for
Behavioural Medicine, University College London.
The project resulted in the development of an
information resource called ‘Bipolar: A Question of
Balance’, following interviews with people with a
bipolar diagnosis in Sussex and through consultation
with patients. This new resource is designed to help
people understand their diagnosis and get the best
from their treatment.
The team recruited the target of 30 people to the study
between June and December 2013 and could not have
done this without the invaluable support from teams
across Sussex Partnership.
The final participants finished the study in March 2014
and participants and teams will be informed of the
outcomes of the study as soon as they are available.
A preliminary look at the findings revealed the
intervention has been successful in meeting information
needs with higher rates of satisfaction with information
among those receiving the intervention compared to
those receiving usual care.
The resource is a tool that tailors information to meet
the needs of individual patients. The tool can be used
by clinical teams as an aid to communicating information
about bipolar disorder and its treatment to patients.
Contact: Lindsay Macdonald - E: [email protected]
4
Dedicated to Research
Mindfulness staff study on target
Mindfulness-based interventions (MBIs)
encourage people to be interested in and be
aware of present-moment experiences (such
as thoughts, feelings and sensations in the
body) whilst learning to compassionately
accept and not judge these experiences.
MBIs are usually offered in a group format over eight
sessions and there is good evidence that MBIs are
helpful at reducing stress and improving wellbeing.
However, this group therapy format is not available
and/or suited to everyone.
There is growing evidence that self-help MBIs are
helpful, most often this takes the form of MBI books
or online courses. Difficulty finding the time to attend
a Mindful-based intervention MBI group may be
especially true for NHS staff, many of whom work
full time and have young families. At the same time,
working in mental health care can be particularly
challenging because of the emotional demands of
the work.
The Trust Board at Sussex Partnership recognised
this need and have funded two studies to evaluate
the potential of self-help MBIs for trust staff. The
first, a feasibility study of self-help MBI reached its
recruitment target of 30 participants within three
weeks.
This achievement would not have been possible
without the overwhelming support of staff across
the Trust. Participants finished the self-help course in
April, so results will be available later in the year.
The second study, due to start towards the end of
2014, will be a pilot randomised controlled trial of
the self-help MBI that emerges from the first study.
Depending on findings, we hope that this study will
help to widen access to wellbeing courses for our staff.
Contact: Clara Strauss (Study Lead)
E: [email protected]
Each network will contain six clinical divisions. Mental
Health, Dementia and Neurological research are in Division
Four. Our regional network will span Kent, Surrey and
Sussex – this will enable more strategic, joined-up
research across the South East. Dr Mark Hayward has
been appointed Clinical Lead for Division Four and will
work to attract high quality studies into the region.
Mark Hayward said, “It’s excellent for Sussex Partnership
to be at the forefront of research developments in the
region. I now have a mandate to bring people together
to make sure our resources are well used. I’m very keen
for organisations in Kent, Surrey and Sussex, who are
involved in dementia, neurological disorders and mental
health research, to work together. We can share lessons
learned and help each other to recruit to studies and make
sure that no patients miss out on research opportunities.”
Understanding and treating
auditory hallucinations
Researchers in Sussex Partnership have written
a textbook on the experience of hearing
distressing voices.
It charts the development of psychological approaches
over the past five decades – from the behavioural and
coping techniques of the 1970s, through the development
of CBT in the 1990s and the creation of third wave
acceptance-based therapies during the 21st Century.
The editors, Dr Mark Hayward and Dr Clara Strauss,
suggested that therapies should focus upon developing
positive beliefs about the self, as well as assessing the
accuracy of beliefs about the perceived power of the voices.
Sussex researcher at the top table
for dementia talks
Dr Neil Harrison was invited to attend a dinner discussion
at the House of Lords, in February, about dementia
and the stigma which still surrounds the condition.
Chaired by Baroness Sally Greengross, the focus was
to shed further light on the reasons why dementia
continues to carry the weight of stigma and how the
situation can be improved. A paper will follow.
www.sussexpartnership.nhs.uk/r-and-d
5
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Research for Patient Benefit (RfPB)
£265k grant to look at cognitive behavioural therapy for psychosis
Dr Kathryn Greenwood has been awarded a £265,000 grant to undertake research promoting
better implementation of Cognitive Behavioural Therapy for psychosis (CBTp) by clinicians and
better uptake by patients. The Research for Patient Benefit (RfPB) grant will develop two novel
computerised pre-CBT interventions, one for staff and one for psychosis patients.
Psychosis affects over
600,000 people in the
UK, many of whom (40%)
have recurring persistent
symptoms, despite
medication. The distress
caused and the impact
day-to-day leads to poor
quality of life, recurrent
relapse and hospitalisation
for the individual and
additional distress for their
families.
Currently, CBT is the most widely recommended individual
talking therapy. It has a large evidence base, with
documented benefits for people with psychosis, over and
above those conferred by medication. A recent pilot
study has also found benefits from CBTp in people who
choose not to take medication. CBTp can help people to
manage their distressing experiences by changing the
way they think and behave, leading to improved mood
and quality of life.
However 94% of NHS trusts struggle to deliver CBTp
and fewer than 20% of patients receive it. CBTp
implementation is a national and a local priority, but
barriers are complex and multi-faceted. Personal barriers
exist in both clinicians and patients, such as lack of
knowledge about CBTp, pessimism regarding outcomes
and effectiveness and personal beliefs regarding health,
treatment and capacity for change. However, little is
known about these personal barriers or their impact on
uptake or implementation.
This study will develop and test two new pre-CBT ‘informed
choice’ interventions that aim to help inform decisions
to offer (clinicians) and accept (patients) CBTp, by
impacting on hope, self-efficacy and empowerment and
by addressing personal barriers (knowledge and beliefs).
We will investigate whether the ‘informed choice’
interventions need to be implemented in the NHS to
improve knowledge, beliefs and behaviours of clinicians
and patients towards CBTp implementation and uptake.
The project will involve four phases:
Phase 1: Focus groups will explore personal barriers and
facilitators towards CBTp. Analysis will identify important
themes which will be used to form an online questionnaire.
Phase 2: Questionnaires will be completed by 200
clinicians and 200 patients from the psychosis service.
These will tell us more about what needs to be in the
interventions to promote more positive responses to
CBTp. This will allow us to draft the ‘informed-choice’
interventions.
Phase 3: We will consult with clinicians, patients and
other stakeholders, to develop the two pre-CBT informed
choice interventions.
Phase 4: We will test the interventions in two randomised
controlled trials with 40 clinicians and 40 patients who
are ambivalent regarding CBTp. Each person will complete
outcome measures (e.g. their views of the intervention)
before and after the intervention and three months later.
We hope that the study will provide new information
about personal barriers and facilitators (knowledge
and beliefs) that affect uptake and implementation
of psychological interventions in general and CBTp in
particular.
Two novel outcome measures and two novel
‘informed choice’ interventions will be produced with
the potential to impact directly on the uptake and
implementation of CBTp. We anticipate that the patient
intervention may impact more broadly on patient
mental health and wellbeing (hope, self-efficacy, and
empowerment).
The project, which will begin in the autumn, is
collaboration between Sussex Partnership, the
University of Sussex, and the Institute of Psychiatry.
For more information please contact:
Kathryn Greenwood
Email: [email protected]
£100k grant to
study mindfulness
for OCD
The BeMind study has
secured £100,000 of
Research for Patient
Benefit (RfPB) funding for a 19-month study to
evaluate mindfulness-based behaviour therapy
for Obsessive Compulsive Disorder (OCD).
Dr Clara Strauss is leading the study which is recruiting at
our OCD Clinic at Health in Mind in East Sussex and in our
primary care services in Brighton and Hove. Exposure and
response prevention (ERP) is a well-established and effective
behaviour therapy for OCD and it is the psychological therapy
recommended by NICE for OCD. However, about a third of
people with OCD do not benefit from ERP.
Mindfulness-based interventions (MBIs) encourage people to
become more aware of their current experiences (such as
thoughts, feelings) whilst accepting and not judging these
experiences. MBIs have good evidence for effectiveness for a
wide range of physical and mental health conditions, but
evidence is lacking for OCD. However, there are good reasons
why a mindfulness-based approach might be helpful for OCD.
People with lived experience of OCD contributed to the design
of this study and will meet to oversee the study whilst it is
running.
The study team want to see whether Mindfulness-Based ERP
is more effective than ERP on its own and whether it has
lower drop-out rates than standard ERP. BeMind is a randomised
controlled study that will compare ERP with MindfulnessBased ERP, with both therapies offered in a group format.
The study is recruiting 40 adults with OCD, who are in our
primary care services in Brighton and Hove or in East Sussex
(see page 14 for more details about our new OCD Clinic).
Participants will be allocated at random to either a ten-session
ERP group or to a ten-session Mindfulness-Based ERP group.
Assessments will take place before the therapy starts, immediately
after the therapy and again six months later. This will help us
to find out if adding a mindfulness-based approach to ERP
appears to be helpful. If it seems to be helpful the research
team will apply for further funding for a larger study which
will help to answer the research question more definitively.
For more information please contact:
Clara Strauss
Feasibility study of a
community based innovative
service for Hepatitis C
Hepatitis C virus (HCV) is a major health
burden in England. Unfortunately, of
the 23,000 people estimated to be HCV
positive in south east England only 8,400
have been diagnosed.
Poor HCV diagnosis rates have been attributed
to difficulties in patient engagement: only 20%
identified with HCV infection were known to
Hepatology services. Furthermore, of those
eligible for antiviral treatment, only 5% actually
attended their clinic appointment.
There also remains a reluctance to treat HCV
infection in those with ongoing substance misuse
due to concerns regarding compliance and
reinfection. This is particularly relevant to south
east England where we have one of the highest
prevalence of injecting drug users in England.
However, recent data shows that HCV treatment
of active injecting drug users is feasible and could
effectively reduce transmission. Although people
who inject drugs do not engage with Hepatology
services, they do engage with Substance Misuse
Services (SMS) - 70% of SMS attendees accepted
blood-borne virus testing. This suggests the value
of developing, and evaluating an innovative HCV
service for delivery in SMS settings.
The aim of the research will be to evaluate
the feasibility of providing a community-based
innovative HCV support service at the substance
misuse service (SMS): blood born virus testing,
hepatitis B virus vaccination and HCV treatment.
This service can be refined to become a toolkit
for further research and/or implementation
in other NHS Trusts. This would offer patientcentred care with the potential to: improve
diagnosis rates; provide opportunities for earlier
intervention, improve treatment outcomes and
prevent onward viral transmission.
The Principal Investigator Dr Sumita Verma
(Brighton and Sussex Medical School), has been
awarded an £80,000 grant to carry out this
research. The research is funded by National
Gilead Fellowship (£50,000), Brighton and Hove
Substance Misuse Commissioners (£20,000) and
Brighton and Sussex University Hospital (£10,000).
Email: clara.strauss@ sussexpartnership.nhs.uk
Website: www.controlled-trials.com/ISRCTN52684820
6
Dedicated to Research
www.sussexpartnership.nhs.uk/r-and-d
7
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Conference and event update
Parenting workshop: Helping
anxious parents to raise
confident children
Dr Sam Cartwright-Hatton
(University of Sussex)
hosted a workshop on
parenting and the anxious
client for clinicians in
February, which had
the dual aims of giving
practical advice to
clinicians and also raising
awareness of the study among clinicians to
increase recruitment.
Sam talked about the Anxiety Symptoms
Prevention Investigation (ASPI) study, which
looks at parents who have an anxiety
disorder, and gave practical guidance on
how to work with anxious parents to help
them to raise confident children.
Centre for Dementia Studies
research seminar: 31 March
Lisa Rodrigues
opened the event
which was hosted
by Professor
Sube Banerjee,
Dr Naji Tabet
and Professor
Jennifer Rusted
who all gave presentations on their latest
research. Dr Nicolas Farina talked about the
role of exercise and lifestyle in dementia and
Dr Cassie Richardson talked about the AHEAD
study which looked at exercise in Alzheimer’s
disease and gave feedback from participant
experiences.
There was also a workshop about the types of
information available in memory clinics. See a
short film of Sube Banerjee’s presentation at:
www.sussexpartnership.nhs.uk/r-and-d/themes/
dementia/cds.
See more about the Centre for Dementia
Studies on page 16.
8
Dedicated to Research
Taking research to our clinical teams
For those who don’t have time to come to Sussex
Education Centre, we are also starting to take study
‘road shows’ out to our clinicians to show them a
range of research and how they and their patients can
get involved.
Our latest roadshow events at Langley Green Hospital and
Hellingly, focused upon psychosis research. The roadshows were
hosted by Dr Kathryn Greenwood and introduced the following
studies:
• Understanding voice-hearing experience (Sarah Fielding-Smith)
• Guided self-help CBT for distressing voices (Cassie Hazell)
• SuperEDEN: Social recovery therapy in early psychosis (Clio Berry,
Kat Pugh and Sam Fraser)
• CIRCLE: Contingency management intervention for reduction of
cannabis use to manage first episode psychosis (Kelly
Humphryes and Leila Hughes)
• Metacognition and function outcomes in first episode psychosis
(Geoff Davies).
Karen Swirsky, Research Network Manager, gave advice on how
staff, patients and carers can find out about participation in research.
Michaela Bucur, Acute Lead Clinician, NW Sussex and Consultant
Psychiatrist, Langley Green Hospital: ” The event was an amazing
opportunity to reflect, be inspired and contribute to current
research and also to use our own aspirations in managing
patients with psychosis. It showed how we can contribute to the
development of research projects that reflect the needs of this
patient group.”
Dr Igbinedion, Sussex Partnership: ” It was a special day where
the focus was on how staff can make a real difference through
research in the lives of patients with psychosis. It was very
engaging and the presenters listened to our day to day challenges
in treating patients with psychosis and showed how we can
aspire to overcome them through clinically relevant research.”
Mood and Anxiety Research
(MARS) conference, Sussex
Education Centre
Dr Clara Strauss hosted a day-long event in
November, which brought together local and
international mood and anxiety research:
Keynote speaker Professor Marcel
van den Hout, from Utrecht
University, shared his work with us
on how Eye Movement
Desensitisation and Reprocessing
(EMDR) blurs aversive (and pleasant)
autobiographical memories. He
said that it is claimed that EMDR
is a quick and effective ‘power
treatment’ for post traumatic stress syndrome and
while reaction to ‘power treatments’ are generally
unfavourable, EMDR is the exception to the rule.
He talked of ‘imagination inflation’ where
concentrated recall has a lasting effect on the memory
and suggested that EMDR does the opposite as it
‘deflates the imagination’. His theory is that EMDR
exploits the fact that memories become ‘plastic’
during recall and so EMDR can reduce the vividness of
the memories.
Keynote speaker Dr Neil Harrison,
Honorary Consultant Psychiatrist,
Sussex Partnership, talked about
depression and inflammatory illness
and how the two are linked as the
symptoms of both have similarities:
low mood, apathy and loss of interest
in activities previously enjoyed. These
similarities have led psychiatrists to
ask whether depression is a prolonged or maladaptive
sickness response. He explained how the immune
system and brain communicate and questioned if
inflammation could be linked to other mood and
anxiety disorders.
Other presentations included:
Annual Research & Development
Conference, 12 June 2014,
University of Sussex
Our 7th annual conference was opened by
our Chairman, John Bacon CB and featured
our three professors.
Our keynote speaker was Professor Stephen Wood
from the University of Birmingham who explored
clinical staging in youth mental health. Afternoon
sessions covered the range of research initiatives
from our key research areas.
Stephen Wood: Professor of
Adolescent Brain Development and
Mental Health, University of
Birmingham
Sube Banerjee: Professor in
Dementia, Brighton and Sussex and
Director of Centre for Dementia
Studies
David Fowler: Clinical Professor of
Psychology, University of Sussex
Hugo Critchley: Chair of Psychiatry,
Brighton and Sussex Medical
School and Honorary Consultant
Psychiatrist, Sussex Partnership
Research and Development
events 2014
• Sussex Mindfulness Centre 2nd Annual Conference
Friday 19 September 2014 9.30am – 4.00pm,
Lecture Theatre, Sussex Education Centre, Hove.
Keynote speakers: Professor Willem Kuyken
and Chris Cullen
• Mental health research within a major trauma
service (Dr Lisa Page)
• Mood and Anxiety Research in Sussex (MARS)
Conference
• Family accommodation in OCD (Dr Lucy Hale)
Friday 21 November 2014 9.30am – 4.00pm,
Lecture Theatre, Sussex Education Centre, Hove.
Keynote speaker: Professor Chris Brewin
• Recent advances in interoception: insights into
anxiety and autism (Dr Sarah Garfinkel)
Next MARS conference: 21 November 2014
For further details or to book a place:
www.sussexpartnership.nhs.uk/r-and-d/
events-comms/seminar-programme
or contact: [email protected]
www.sussexpartnership.nhs.uk/r-and-d
9
Research Magazine 2013
Research Magazine ISSUE 4
The Research Network
Nurses’ pledge to patients (NHS Constitution, 2013)
T
he NHS commits to inform you of research studies in which you may be eligible
to participate.
This pledge aims to give people better access to the potential benefits of participating in research studies
including clinical trials. Information that identifies you will not be given to researchers unless you have
given your consent or the research has been given approval under the Health Service (Control of Patient
Information) Regulations 2002.
We aim to use our Research Network to help our nurses and clinicians to carry out this pledge.
The Research Network is growing!
P
atients, carers and staff are showing they are interested in research. They are joining
the Research Network to keep up to date with our research, find out about research
opportunities and tell us about their experience of taking part. We are pleased to say the
Research Network has grown by 40 percent in the last six months to April 2014.
Karen Swirsky is spreading the word about the Research
Network. As the project manager, she visits teams
within Sussex Partnership to explain the benefits of
signing up and to encourage staff to tell patients
and carers about the Research Network. Staff whose
patients have participated in a study report how
positive the experience has been.
Chris Saxby-Randall, CPN in the West Hub in Hove, says;
“ Patients tell me that they like feeling
involved and being kept informed
about what research is taking place
and feel valued in being asked to
take part.”
Karen has also attended staff induction days, conferences
and seminars to promote the Network. Recently she had
a stand at the Mental Health Conference in Eastbourne
hosted by Brighton University and gave a presentation
to the Horsham & Crawley mental health forum. She has
also joined forces with a patient feedback project in the
Chichester Assessment & Treatment Service.
She has been promoting the Research Network with
voluntary organisations working with people with
mental health problems, such as South Downs Housing
Association, Brighton Housing Trust, Richmond
Fellowship, United Response and Sussex Oakleaf.
“ I have been heartened by how
enthusiastic people in the voluntary
sector are about the Research
Network and the Trust’s research
activity. They really want the people
they work with to have opportunities
to get involved and take part in
studies.”
Karen has also presented at psychosis research seminars
at Langley Green and Hellingly (see page 8). Our
researchers told clinicians about the various psychosis
research studies underway in Sussex and Karen told
them about the benefits of joining the Research Network.
Dedicated to Research
P
am’s first connection with the Research &
Development team was when
she picked up a study information leaflet
and volunteered to take part. She was
disappointed to find that she was not eligible,
so she joined the Research Network hoping
that there would be other studies for her.
She understood that not everyone on the Research
Network gets the opportunity to take part in a study but
she was excited when she was asked to participate in
another study two months later.
“ I thought great – I will be part of something that will help me and
possibly others in the future. It always helps to be positive.”
How was taking part in a study?
“ Everyone I met was very pleasant and helpful. I had a brilliant
experience - it was really worth it. My therapist was marvellous and did
wonders with me. The therapist built up my confidence no end and
helped me be more assertive.”
Although Pam felt sad when her involvement with the study finished after five months, she feels she had
gained a lot. Pam likes receiving the magazine as she finds the articles really interesting. She has shown it to
other people and has encouraged them to get involved in research, so she is pleased that one of her friends
has just joined a study.
What would you say to anyone considering signing up to the Research Network?
“ Do it – it is a positive thing to do as you know you could be helping
someone else and you benefit from it as well.”
Dr Dutta, who attended the Langley Green seminar said:
“ I would like now to let the patient and
their carers know about the
opportunities in research: the
presenters provided us with the
right information on how we can
communicate and engage the patients,
carers and staff in psychosis
research.”
Karen will attend team meetings on request. Contact:
[email protected]
10
Interview with Pam, a member
of the Research Network
If you join the Research Network you will
• Receive the bi-annual research magazine
• Be informed of research studies relevant to you
• Keep up to date with Sussex Partnership research
RESEARCH
SAVES LIVES
To join the Research Network or find out more:
• Sign up online: www.sussexpartnership.nhs.uk/r-and-d/involvement/researchnetwork
• Call: 01273-265896 • Email: [email protected]
www.sussexpartnership.nhs.uk/r-and-d
11
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Involvement
Involvement in Dementia research
Strategy for Patient and Public Involvement
Ruth Chandler and Jean Southey, Involvement co-ordinators, outline key areas of involvement.
For more detail about the involvement strategy contact: [email protected]
Involvement in design and delivery
Good involvement in design positively influences
a research project; from scoping the question and
setting the agenda; developing the protocol and
producing research materials that are accessible.
Involvement in design can also improve the
reporting of findings in a way that is accessible.
Co-applicancy of lived experience experts will be
encouraged where there is a specific, valued and
supported role agreed at design stage. Our trained
peer researchers help with the delivery of research
from recruitment to interviewing participants. We
also have involvement in the new research clinics.
Involvement in evaluation
One of the limits of even the best involvement is
that small groups with relevant lived experience
can never fully represent the diversity and
experiences of our research participants. Patientled evaluation of participant experience will
enable us to address this. Finding out more about
motivations for taking part in research and things
that put people off will help develop better
recruitment strategies.
Involvement
Lived
Advisory
Forum
We
have Experience
set a date for our
Lived experience
advisory Forum (LeaF) conference:
LEAF (Lived Experience Advisory Forum), chaired by Ruth Chandler,
The Scope and Limits of Patient and Public involvement (PPi) in
is founded
a critical friendship model of collaboration and
Research
Decisionon
making.
consultation in which different and equally valued perspectives
Tuesday 16th July, 10.00am - 4.30pm
hands
in a shared
learning journey with the shared goal of
atjoin
the Sussex
education
Centre, Hove
improving the quality of research and their translation into
To register please contact: [email protected]
practice. All of our themed groups share this ethos and we have groups in the following areas:
The conference will bring together presentations and reports from involvement
Dementia, Psychosis
(PIG),
Early
intervention
ininvolvement
psychosis
Mood and Anxiety (MARS), Learning disabilities
activities
across the
research
cycle. it will show how
plays (SURF),
a part in
range of different decision making processes, including study design, governance,
(LDRiG). We haveabeing
emerging
groups
in
Understanding
personality,
Substance misuse and Neurobehavioural. We
on a steering group for research studies and being a peer researcher.
will continue to work extensively with academic and clinical partners to support and develop involvement in
their studies. Our critical friendship approach is backed up by a zero tolerance towards tokenism. We always
Carer
wantinvolvement
to work withwithin
people who want to work with us but we also reserve the right to say no to working on
Peer Researcher Training
dementia
research
studies that
have no meaningful plan to involve us.
We have recently completed another
five-week course of ‘peer researcher’
training. a peer researcher is a researcher
who has lived experience of mental
health issues.
We believe that people who have experienced
mental health problems have a great
understanding to bring to research within the
Trust and so are well placed to interview people
who use our services.
Supporting the development of the
Research Network
Jean has already been impressed with the interest
shown by carers who have valued the supportive work
of the Trust and who have expressed an interest to be
involved. Work is underway on a number of research
proposals and the importance of having someone
to lead involvement within the dementia theme has
become evident.
They develop all round research skills including
framing a research question, questionnaire
design, data gathering and interviewing
techniques. Peer researchers get paid for
undertaking training and also for the work they
do on research studies.
Developing lived experience
roles in research
Our strategy emphasises involvement of people
People with lived experience will be encouraged
with lived experience across the entire research
Jean has gained
valuable
insights in theto
development
and
supported
take active roles in the
cycle. We train involvement consultants to
of a PPi training package piloted by Ruth Chandler and
development
andto delivering
implementation of the
Terry mcgrath
of DenDRon, with a view
contribute
to research by taking up active roles in
this training package in the South east region.
Other studies
that have used the skills of peer
Research Network, with a particular
emphasis
researchers include experiences of Community the design, delivery, reporting, critical appraisal
Treatmentsector
Orders (Julia
Stroud), the eYe project
on buy in from members of the third
and
as part of a team championing the Research network
(Kathryn greenwood) and Community Living
and evaluation of research activity. We have
Jean is focussing on community links
and is publicising
it
voluntary
sector
Following Discharge from a Secure mental Health
through a number of local community events. as part of
several themed groups to support this activity.
Unit (Debbie alred)
this work she also gave a presentation to the Dementia
and Older People’s mental Health Research Seminar
in april, entitled “new directions for involvement in
dementia”.
12
14
Dedicated to Research
Dedicated to Research
Her role is to ensure that Involvement is embedded in
the design of dementia research and that patients
and caregivers contribute their experience throughout
the research cycle.
An important strand of Jean’s work is to develop
consultation for studies and programmes emanating
from the Centre for Dementia Studies: a collaboration
between Sussex Partnership and Brighton & Sussex
Medical School.
Jean has recently launched a three monthly consultative
group in which people with lived experience of
dementia will respond to current dementia research
plans to develop better provision for patients and
carers across the Trust. These views will help to inform
researchers’ decision making and priorities.
Another way Jean involves the public in research
is through setting up specific advisory groups for
individual research studies. The group meets at key
points in the research to feedback their perspective.
This helps to keep the research both focussed and
relevant so that public and professional perspectives
can be complementary.
ReseaRch Magazine 2013
Service user and Carer involvement is taking
off as Jean Southey, appointed to lead on
involvement within the dementia theme,
develops a specialist advisory forum which will
be able to influence the dementia research
process from a lived experience viewpoint.
Jean Southey is Co-ordinator for Patient and
Carer Involvement within dementia research
at Sussex Partnership.
Involvement in our
clinics
Laura Lea supports Public and
Patient Involvement at the
OCD Clinic in East Sussex.
A member of LEAF, the Trust’s Lived Experience
Advisory Forum she has worked alongside Dr Clara
Strauss and members of the public to develop a new
therapy for people with OCD. She says:
“ It’s great to see that the involvement work has had a
direct impact on developing services. I look forward to
supporting more people to become involved as new
research projects take place. ”
In addition to her work with the OCD Clinic Laura supports
work in the Mood and Anxiety Research in Sussex
(MARS) research theme, particularly the self-help for
depression (LightMind) project. This study investigates
two kinds of supported self-help courses (CBT and
MBCT) with 40 people experiencing symptoms of
depression. See more about the clinic on page 14.
Involvement pays off
The SURF Group (Service User Research
Forum) in Early Intervention in Psychosis
(EIP) worked with Dr Kathryn Greenwood
on the EYE project.
They took part in writing the grant, pre-ethics
consultation, data collection, analysis of findings and
have been extensively involved in reviewing and
refining EYE outputs (website and myth busting
booklets). See more about the EYE study on page 18.
“For me, being involved in the EYE project highlighted
the impact that research can have and it’s ability to
spark action and change. From the worth of just
being heard, to it being valued by professors and the
like, the whole process has been one of enlightenment.
Through personal experience I understand the power
of engagement. It is a doorway that if a service
lacks, can blunt every other tool in the house. With
that in mind, the importance of this project should
not be underestimated. The selflessness, fluidity
and adaptability of the project as a whole, is not
only a credit to those involved but reflected in
what it has already inspired.” Surf Member
SURF members have taken part in the training of
early intervention staff and are now training to
be peer support workers in the EIP service. SURF
has helped Dr Greenwood to apply for a further
grant to look at Cognitive Behavioural Therapy for
psychosis.
The review panel stated that the PPI in this bid was
‘exemplary’. See more about the study on page 6.
Involvement in research can help by:
• Making research more relevant, so that research is
valuable and a respectful use of people’s time.
Involvement increases the likelihood of the research
findings being useful to patients and the public
• Helping to define what is ethically acceptable in research
• Making it easier for prospective participants to
understand what the research entails
• Improving the experience of participating in research;
checking that the practical arrangements for
participants are appropriate
• Providing information on the progress of the research
as well as the final results
• Disseminating research to both the participants and
the wider public.
www.sussexpartnership.nhs.uk/r-and-d
13
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Increasing research opportunities:
OCD Clinic, Voices Clinic and PTSD Clinic
In Sussex Partnership we are piloting specialist clinics that are a partnership between our clinical
services and the R&D department. The clinics offer the latest in evidence-based treatments
delivered by clinicians, working under specialist supervision. The clinics also offer patients
and carers the opportunity to take part in research studies so that we can develop even more
effective treatments.
OCD Clinic: A new clinic to help people
with Obsessive Compulsive Disorder (OCD)
In the first four months there have been over 100
referrals and three therapy groups are up and running
in the clinic. A number of people are also being
supported to use self-help materials to help them to
overcome OCD.
Everyone attending the clinic is offered the opportunity
to find out about our current research and invited to
join the Research Network (see page 10 for details).
November 1st 2013 saw the launch of a new
OCD Clinic which is currently being piloted in
Health in Mind (the primary care adult mental
health service in East Sussex).
People with OCD experience recurrent, unwanted
and distressing intrusive thoughts (‘obsessions’) and/
or repeated, prolonged behaviours such as cleaning or
checking or mental rituals (‘compulsions’).
The OCD Clinic is a fairly unique venture as it brings
together our clinical services with our research service.
The aspiration of the clinic is to offer the best quality
clinical practice alongside the best in innovative
research. The clinic is funded through a collaboration
between Health in Mind (a partnership between
Turning Point and Sussex Partnership) and the R&D
Department in Sussex Partnership.
The OCD Clinic offers comprehensive assessments and
evidence-based interventions to everyone in Health in
Mind with OCD. All the interventions offered are based
on a behaviour therapy called Exposure and Response
Prevention (ERP) as this is the psychological therapy
with the strongest evidence for effectiveness for OCD
and is recommended by NICE. The clinic offers cliniciansupported self-help ERP interventions for people with
OCD. For other people the clinic offers 12-session ERP
therapy groups. ERP group therapy is as effective as
individual ERP but it has the advantage of bringing
people with OCD together to share their experiences
and learn from each other.
14
Dedicated to Research
People attending the clinic are also invited to take
part in relevant research studies so that we can find
out more about the causes of OCD and develop more
effective treatments. An example of a study that is
currently recruiting in the OCD Clinic is BeMind, an
evaluation of mindfulness-based behaviour therapy for
OCD (see page 7 for more details).
The OCD Clinic is led by Clara Strauss and staffed by
six CBT therapists (Liz Gore, Veronique Wrench, Becca
Mackay, Musa Nyoni, David Wallace-Morrison and Lucy
Bye), a Research Assistant (Charlotte Wilcox) and a
Public and Patient Involvement Lead (Laura Lea).
Psychological Wellbeing Practitioners from Health in
Mind are also working in the clinic to support the selfhelp interventions. The clinic has been supported from
the beginning by the Health in Mind Clinical Lead (Juliet
Couche) and the Operations Manager for Turning Point
(Kevin Rozario-Johnson).
Laura Lea (Public and Patient Involvement Lead) said:
“We are really pleased that the discussions that patients
had with clinicians about treatments has led to the
opportunity to start a new clinic for people with OCD.
At the same time the research which takes place in the
clinic will help improve treatments and understanding
of the problems that people with OCD face.”
If you are an adult living in East Sussex you can
find out about referring to the clinic by phoning:
03000 030 130.
You can also see the OCD Clinic website here:
www.sussexpartnership.nhs.uk/ocdclinic
For more details contact Dr Clara Strauss,
email: [email protected]
PTSD Clinic
Voices Clinic
Plans are underway to launch a new clinic for
people who have post-traumatic stress disorder
(PTSD). This disabling condition affects up to
one in ten people during their lifetimes.
The R&D Department has collaborated with the
Brighton and Hove Assessment and Treatment
Service (ATS) to launch the Voices Clinic.
PTSD can be a consequence of traumatic events in
childhood or adult life, leading to symptoms such as
anxiety, flashbacks, nightmares, feeling numb, and
patterns of avoiding reminders of the trauma.
The clinic will offer evidence based psychological
interventions including individual Trauma Focused
CBT (TF-CBT) and Eye Movement Desensitization and
Reprocessing (EMDR), which are both recommended in
NICE guidance.
The clinic will be piloted in primary care services
in Brighton and Hove and build on the successful
treatments already offered there.
It is also likely to introduce an evidence-based group
therapy intervention for PTSD – this can be powerful
because it allows people to learn from one another and
normalise their experiences during recovery.
The clinic, due to start in the autumn, will join or
initiate research trials to improve the effectiveness of
therapies and make them accessible to more people.
For more details contact Dr Adrian Whittington,
email: [email protected]
Hearing voices when no-one is around is a fairly
common experience and is not, in itself, a problem
– many people hear voices and are not particularly
bothered by this experience. However, some people
are highly distressed by the voices, which can have a
detrimental impact on their quality of life.
Patients referred to the Voices Clinic will receive a
comprehensive assessment of their voice hearing
experiences and will be offered high quality, evidencebased interventions. The interventions will be offered in
individual and group formats and will include psychological
therapies that have been developed in Sussex, such as
mindfulness-based groups for distressing voices.
The interventions will be delivered by ATS clinicians
(Heather Ball, Jude Godden, Jeremy Rowe and Louise
McCusker) under the supervision of local experts in the
field (Mark Hayward and Clara Strauss). In addition, all
patients will be given the opportunity (with no obligation)
to take part in high quality research studies that aim
to improve understanding of distressing voices and to
improve the effectiveness of interventions.
For more details contact Dr Mark Hayward,
email: [email protected]
www.sussexpartnership.nhs.uk/r-and-d
15
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Centre for Dementia Studies
The Centre for Dementia Studies (CDS) is a joint venture between Brighton and Sussex Medical
School and Sussex Partnership NHS Foundation Trust.
Its programme of work in applied health research, education and policy is designed to improve the quality of life
of people with dementia. Good quality dementia care requires multi-disciplinary and interagency working, with
patients and carers at the core. Its aim is to deliver research that makes a real difference for people with dementia
and their carers.
Director: Professor Sube Banerjee, (Professor of Dementia,
Brighton and Sussex Medical School).
Assistant Director: Tanya Telling (Assistant Director of
Research, Sussex Partnership).
CTRU Lead: Dr Naji Tabet, (Sussex Partnership).
Manager: Victoria Hare (Sussex Partnership).
Research Fellow: Dr Nicolas Farina.
Research Assistant: Emma Ludyard Williams.
Sube Banerjee launched the Centre for Dementia
Studies in March and talked about the work he has
been doing to create leaders in primary care:
1: The MSC course in dementia which started in September.
2: The primary care dementia fellowship programme
for doctors and nurses across Kent, Surrey and Sussex.
The focus will be on the experience of people with a
diagnosis of dementia in a healthcare setting. Trained
staff will be able help our general hospitals to change
to become places that are positive places for people
with dementia to go.
3: The Time for Dementia programme. Helping clinicians
to understand this long-term condition by meeting and
spending time with people with dementia and their
families, so that they gain a deep understanding of
what is to be old and live with dementia.
Sube introduced the following research studies:
CDEMQOL
Measurement of quality of life (QOL) in carers of people
with dementia: development of a new instrument for
clinical and economic evaluation
Funding: Medical Research Council (MRC) Grant
Summary: The study aims to develop an instrument to
measure QOL in carers of people with dementia.
How it will benefit patients: Carers are a vital
determinant of QOL and positive outcomes for people
with dementia. Caregiving extends beyond handson care to include anticipating future support needs,
monitoring and supervising, preserving the individual’s
sense of self and helping the individual to develop new
and valued roles. Identifying and helping to improve
the QOL of carers will assist in providing better support
for both the patient and the carer.
16
Dedicated to Research
Inaugural lecture: ‘Dementia: Reasons to be cheerful’
Sube Banerjee gave his inaugural lecture at the Brighton and Sussex Medical School in February.
His theme, to the tune of Ian Dury’s song from the late 1970s was to show how far dementia
has come since then.
“It has been a real achievement to drive dementia from
being one of the least thought about conditions in
health and social care to being the very top priority.
The brilliant news is that there are answers to each set
of problems. We have done work to measure quality of
life in dementia; we need to know what helps people
and what doesn’t.”
SYMBAD
Study of Mirtazapine or Carbamazepine for agitation in
dementia
Funding: National Institute of Health Research (NIHR)
Health Technology Assessment Programme Grant.
Summary: Behavioural and psychological symptoms in
dementia (such as agitation, aggression, wandering,
shouting, repeated questioning and sleep disturbance)
are common, occurring in up to 90% of dementia cases.
Antipsychotics; the mainstay of drug treatment for
agitation in Alzheimer’s disease, do harm. Emerging
evidence suggests two inexpensive, safe, routinely used
drugs (mirtazapine, an antidepressant and carbamazepine,
an anticonvulsant) may be effective in treating agitation
in dementia. We propose to determine whether either
drug decreases agitation in dementia.
How it will benefit patients: Better management of
agitated behaviours in dementia is a priority. The
antipsychotic drugs most commonly used now have low
efficacy and in 2008 were responsible for 1,800 extra
deaths per year in the UK. Reducing the use of these
medications is a government priority and research into
safe effective alternatives (such as this) is a research
priority to improve the life of the patient and their carer.
DIADEM
Diagnosis in Dementia: a comprehensive evaluation of
the positive and negative impacts of earlier and later
diagnosis of dementia.
Funding: National Institute of Health Research (NIHR)
Programme Grant for Applied Research
Summary: The aim of the study is to investigate the
impact (benefits and harms) on people with dementia
and their carers of having dementia diagnosed at an
earlier or later illness stage.
How it will benefit patients: DIADEM is designed to
deliver significant benefit to patients, carers, the NHS
and social care by generating new, definitive evidence
and guidance on the balance of value in receiving
a dementia diagnosis earlier or later in the illness
trajectory. It will define what ‘timely’ diagnosis means
from patient, carer and NHS perspectives.
Professor Banerjee believes there is a better future for
those with dementia. He said,
Dementia is one of the most common and serious
disorders in later life, “Currently 35 million people
have dementia around the world and this will double
in a generation. This disease has a real impact not just
on those who have it and those who care for them,
but also on healthcare costs and provision. It has been
estimated that $600 billion is spent in response to the
condition – if dementia was a country it would be the
eighteenth largest economy in the world.”
Dementia causes irreversible decline in global
intellectual, social and physical functioning.
Abnormalities in behaviour are part of the disorder,
as are neuropsychiatric symptoms such as psychosis,
anxiety and depression.
The negative impacts of dementia on those with the
disorder and on carers are profound and are often
presented in terms of crisis and catastrophe.
Diagnosis rates are still too low, only 44% of people
with dementia in the UK ever know they have it, and
when the diagnosis is made it tends to be too late.
“We can change public attitudes and understanding,
and this is already starting to happen. We can change
professional skills and training and this too is starting to
happen. We can develop services for early intervention
and ensure that all who need to be diagnosed are
diagnosed and this is already happening with the
introduction of memory services around the world. This
is the agenda of applied health research which we are
engaged in at the Centre for Dementia Studies.”
Professor Banerjee has also unveiled plans to create a
census of memory assessment services that that exist
across Kent, Surrey and Sussex and to find out which
service models work for people with dementia and
which ones are less effective.
The work of Dr Tabet and his team at the Cognitive
Treatment and Research Unit (CTRU) is an integral part
of the Centre for Dementia Studies.
However, this is not the whole picture. There are
reasons to be cheerful. Sube’s lecture focused on the
positive value of the new policy priority accorded to
dementia and the emerging evidence on what we
can do to improve the quality of life of people with
dementia and their family carers.
There has never been a better time to have dementia
Sube went further, to say there has never been a better
time to have dementia because the condition has
never before had such a high priority for diagnosis and
management.
See a short film of Sube’s presentation at:
www.sussexpartnership.nhs.uk/r-and-d/themes/
dementia/cds
www.sussexpartnership.nhs.uk/r-and-d
17
Research Magazine ISSUE 4
*** TBC - NEEDS EDITING ***
Turning our research into practice
If you want to find out more about the EYE project, watch the videos or look at the booklets,
you can find lots more information on the EYE website at :www.isanyoneelselikeme.org.uk
The Early Youth Engagement in first episode psychosis (EYE) project:
Transforming psychosis services for young people - Dr Kathryn Greenwood
The Early Youth Engagement in first episode
psychosis (EYE) project is an innovative
project supported by the NIHR Research
for Patient Benefit Programme and led by
Dr Kathryn Greenwood, clinical research
fellow at the University of Sussex and clinical
psychologist in the Early Intervention in
Psychosis (EIP) service.
Is anyone else like me?
Supporting young people’s well-being and mental health
The EYE Project
Myth Busting Information Booklet about
Early Intervention in Psychosis Services
The EYE project: Engaging Young people Early in mental health and wellbeing for psychosis
The project aims to
improve the engagement
of young people
with psychosis in
EIP services. This is
because we know that
people who receive an
EIP service have better
outcomes , including
fewer symptoms and
relapses, less
hospitalisation and
better satisfaction with
services.
We also know that whether you look locally, nationally
or internationally, about 25-30% of people disengage
from services in the first 12-18 months. Some of this
disengagement is linked to age, and associated factors,
such as substance use, and limited family contact.
About 7,500 young people develop psychosis every
year in England, even more in the UK as a whole; that’s
over 2,000 young people every year who suffer poorer
outcomes due to disengagement. Disengagement also
impacts EIP staff who work extremely hard to engage
young people, and the NHS as a whole which spends
more money in the long term when young people have
poorer outcomes and greater need of future mental
health services.
The EYE project involves three phases. In the first
phase we interviewed nearly 70 patients, their relatives
(mothers, fathers and siblings), and young people who
don’t currently use services (from local schools, colleges
18
Dedicated to Research
carefully to their needs and act on these; engage with
what is important to them, offer something helpful,
and offer them choice in treatments.
Challenges you may face
Stigma - I’m worried about telling people about my
friend or relative’s problems. What if they judge me?
Stigma or fear that you will be rejected or judged because of a
mental health problem, can be a problem. This is often because
people don’t know enough about mental health and psychosis.
You may want to discuss this with your friend or relative and
with their team, so that you can weigh up the pros and cons of
talking to people you know about what’s happening. Talking to
friends and family members who are supportive can really help
you and your friend or relative to have the support you need.
“ When I was in recovery, a few of my
close friends were kind of involved,
which was really nice. One of my
friends that I’d know since I went
to college came round, and it was
just, you know, was really nice to
talk to someone other than my mum.”
Jamie aged 22.
Talking to your relative or friend’s work, school or college may
also be helpful, but this will be up to your friend or relative to
decide. Their team may be able to help with this too. You (and
your friend or relative) may want to start by telling someone
who you trust. You may want to give them a copy of this ‘friends
and family’ booklet too.
Medication adherence is often a problem in psychosis
– the issue for engagement appeared to be not the
medication itself, but the presentation of this as the
only option. People wanted information and choice
about a broad range of treatments. This is fairly
consistent with recent research, (see the editorial by
Peter Tyrer in the British Journal of Psychiatry which
presents this case).
w
Finally, everybody was
aware that engaging
Supporting young people’s well-being and mental health
young people isn’t
always easy. Young
The EYE Project
people may have their
Myth Busting Information Booklet about
own personal barriers,
mental health and getting help
that make engagement
harder: talking to
strangers isn’t easy but
talking to someone
you don’t know about
mental health may seem
almost impossible. What
is patronising for one
person is motivating
for another. Sometimes
the relationship with
a mental health professional works and sometimes
it really doesn’t, and it’s not always our fault! Rather
than tell us it’s not working, young people will often
just stop meeting. So, we need to ask young people
regularly whether we’re working for them or whether
things need to change, and be as flexible as we can.
Is anyone else like me?
18
The EYE Project: www.isanyoneelselikeme.org.uk
Myth Busting information booklet for friends and family of young people with psychosis
19
and homeless hostels), to find out much more about
what helps and what gets in the way of engagement.
They told us that the information that we give directly
and indirectly through websites, booklets and posters,
and the way that we communicate is really important.
The EYE project: Engaging Young people Early in mental health and wellbeing for psychosis
They wanted much more open, honest and helpful
information that they can find easily, including
information for service users about treatments and
what EIP does: 1. for young people about drugs and
mental illness. 2. for families and friends about what
they can do to help.
They told us that we should focus on engaging
the whole social group, not just the young person
themselves. So, we should generally be asking how, not
whether to include family, and should consider how and
when to involve friends.
Is anyone else like me?
Supporting young people’s well-being and mental health
The EYE Project
Myth Busting Information Booklet
For Friends and Family of young people with psychosis
The EYE project: Engaging Young people Early in mental health and wellbeing for psychosis
Patients told us that
friends can help them
to get back to thinking
about the things that
they would like to do in
life (their goals). Young
people wanted much
more information about
what services offer,
including addressing
issues such as medication
and hospitalisation.
Everybody said that if
you want young people
and their families to
engage, you must listen
In the second phase of the project we told clinical staff,
managers, and national EIP leads what we had learnt
and asked them how we should use this information
to shape our EIP services to better engage young
people. Staff responded really well to the consultation,
taking part in focus groups and completing feedback
questionnaires to help us decide on the final Early
Youth Engagement (EYE) service model. Over 85% of
EIP staff took part in training and consultation sessions
where we discussed and refined the model.
One team leader said about the training and
consultation, “The training has achieved a quite subtle
blend of positive affirmation and inspiration for
change. The team are buzzing with discussion and there
Challenges you may face
Medication - My friend or relative
doesn’t want to take medication or I’m
not sure if it’s a good idea.
This is quite a common problem. Medications
do help with psychosis symptoms but they
have side effects too. On top of that, your
friend or relative may not want to take
medication because the experiences they have
are real to them and they won’t necessarily
view them all as part of psychosis.
It is worth encouraging your friend or relative
to try medication. You might want to encourage
them to try it for at least a few months (as it
can take this long to work) and possibly to try
a second medication if the first doesn’t work
(as it may take a little while to get the right
medication) or try taking it at a different time
of day, e.g. at night rather than in the morning,
if it makes them feel tired.
Once they have given medication a good
try, they can think, with you, and their
clinical team, about which medications and
treatments are right for them. Generally,
the final decision about medications or
treatments is for your friend or relative and
their mental health team.
14
The EYE Project: www.isanyoneelselikeme.org.uk
Myth Busting information booklet for friends and family of young people with psychosis
15
is a greater sense of connection with those that use our
service and their care-givers.”
So, what is the model? The model includes a series of
myth busting information booklets (i) about mental
health and help-seeking, (ii) about EIP services, (iii) for
friends and family, (iv) about treatment options and (v)
about getting the most out of hospital.
There is a supporting website packed with lots of
information: videos by and for young people, training
videos, discussion forums for young people, friends and
family, young people’s psychosis and recovery stories,
help seeking advice and contacts, self-help information
and apps, information about EIP teams and about
getting involved in the service.
The model also involves a psychosis peer worker
programme to support vulnerable and isolated young
people, a revised friends and family protocol to better
engage friends and family, posters and information/
engagement packs for schools, colleges and GPs, family
and patient information-sharing and social groups.
The training programme provides information on the
model and on open, honest, transparent, flexible, goalfocussed and motivational engagement approaches.
We are now in the final phase of the project.
We’re delivering the model across the whole Trust EIP
service – and we’re about to run the training and model
in Kent. We’re evaluating whether the new EYE model
does lead to better engagement of young people in EIP
services - so watch this space!
Read about patient involvement in the EYE Project on
page 13.
www.sussexpartnership.nhs.uk/r-and-d
19
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Turning our research into practice
Self-beliefs, therapeutic relationships and social inclusion for young people experiencing psychosis - Dr Clio Berry
A two-phase questionnaire study was conducted with pairs of young people and their
main mental health professional across Sussex Partnership Early Intervention in Psychosis
(EIP), Assertive Outreach and Recovery services 2010-2013.
The study looked at what
individual and servicerelated factors influence
social inclusion. Social
inclusion is a key part of
personal recovery and
reflects an individual’s
social and occupational
activity and feelings of
community belonging
(e.g. having relationships
and being involved in the
community).
Findings identified two key variables which may
impact on patients’ employment and social inclusion.
First, the perceived quality of the therapeutic
relationship between the patient and the
professional (i.e. care co-ordinator) may influence
social inclusion and employment outcomes - and it
seems particularly important for the relationship
to be perceived as positive by the patient (i.e. as
opposed to by the professional).
In light of this research, therefore, there are three
key practice recommendations:
1. Consider the therapeutic relationship with the
care co-ordinator as a core part of clinical practice
This relationship seems to be both hope-inspiring and
influential to social inclusion and employment outcomes
2. Increased attention to developing therapeutic
relationships which patients, in particular,
perceive to be positive
Patients’ perceptions of the relationship seem most
closely linked with their outcomes
3. Increased recognition of the importance of
positive psychology theory and interventions for
youth mental health services
An increased focus on hopefulness and positive
self-beliefs, rather than negative self-beliefs and
experiences, may be helpful in encouraging positive
social outcomes for young people with psychosis.
Secondly, the extent to which patients feel hopeful
also seems to influence their social inclusion.
These findings have been shared with EIP
professionals across Sussex as part of a training
programme. Clio Berry has now gained her PhD
and continues to work within the Research and
Development team.
It also seems that positive therapeutic relationships
may be hope-inspiring – so a positive relationship
may improve patients’ hopefulness, which in turn
influences their social inclusion.
Study findings are consistent with a positive therapeutic
relationship helping patients to develop their social inclusion,
both directly and through helping patients to feel more
hopeful about their lives.
The findings also suggested that negative beliefs
about the self (e.g. self-criticism) have little impact on
social inclusion for young people with psychosis.
Perhaps due to the focus on ‘evidence-based practice’
and specific interventions, research has somewhat
neglected the therapeutic relationship. Traditional
evidence-based interventions may focus more on the
role of negative self-beliefs than hopefulness.
20
Dedicated to Research
We have a strategy to jointly fund
students of the highest callibre,
with our academic partner, the
University of Sussex. We currently
fund five PhD students at the
University of Sussex, with another
four joining us in September.
We are particularly proud of two
of our students who have recently
completed their PhD. Please find
here details of their research which
shows the difference that their
work can make.
Shaping clinical services:
• These findings have been incorporated
into a clinician training programme that
forms part of the Early Youth Engagement
in first episode psychosis (EYE) project see
pages 18-19)
• This training has been given to over 85%
of Early Intervention in Psychosis Service
(EIP) clinicians in Sussex Partnership
• The training was also recently rolled out
to the Kent and Medway EIP services
• As part of this training, clinicians were
encouraged to think about how intrinsic
the inspiration of hope is to their practice:
how they can foster their own hopefulness
and keep facilitating the development of
this for clients, and what aspects of their
own characteristics may underpin the
development of hope-inspiring
relationships with clients
Hopefulness
Therapeutic
relationship
Investing in our students
Social
inclusion
• The effectiveness of this training programme
on client engagement in EIP will be
evaluated as part of the EYE project.
Exercise, diet and cognition
in older adults - Dr Nicolas Farina
In September 2010 Nicolas Farina set up
the research project “Exercise, diet and
cognition in older adults” to be conducted in
Sussex Partnership as part of his PhD at the
University of Sussex.
Previous research has
shown that exercise
may be beneficial to
cognitive performance
(e.g. attention and
memory) in older adults
as well as delay the onset
of dementia. However, to
date very little research
has investigated the role of exercise on cognitive
performance in a population with memory problems.
The aim of the research was therefore to explore
whether exercise conducted as part of daily routine
can positively affect cognitive performance in those
with dementia. One hundred participants with a
diagnosis of dementia were initially recruited and were
then interviewed (alongside their carer) about their
health, cognitive status and lifestyle. Participants were
subsequently followed up one year later.
The data collected has proved to be invaluable to
increasing our knowledge about how an individual’s
lifestyle can affect memory and attention skills in those
with memory problems. Preliminary analysis of the
data has found that participating in exercise as part
of the individual’s daily routine does bring benefits on
certain tasks – such as planning and concentrating.
It is hoped that research currently being conducted
within Sussex Partnership will produce further evidence
to support these findings.
Nicolas Farina highlights the opportunities that can
follow the completion of a PhD:
“I have recently been appointed as a Research
Fellow with Professor Sube Banerjee at the Centre of
Dementia Studies. My new position will build upon
my skills obtained during my PhD and utilise the
knowledge gained by working in Sussex Partnership
with this clinical population.”
www.sussexpartnership.nhs.uk/r-and-d
21
Research Magazine ISSUE 4
Research Magazine ISSUE 4
Update from our Clinical Research Units
The Cognitive Treatment and
Research Unit (CTRU), Grove House,
Crowborough
This approach takes time but we find it helps with
recruitment – we are pleased to say that because of this
approach, people tend not to drop out of our studies
due to lack of information about what the study involves.
The Cognitive Treatment and Research Unit (CTRU)
is an integral part of the Research and Development
Team, set up by Dr Naji Tabet. It hosts a mixture
of academic and industry supported studies into
cognitive decline in older adults predominantly,
but not exclusively, for those with a diagnosis of
Alzheimer’s disease.
One of our main aims is for patients and their carers to
have a positive experience while taking part in research.
Many of our research nurses have been community
nurses so have experience of working in the community
and being on call – patients have a 24-hour number to
call while on the study. They offer a warm welcome to
patients and caregivers which ensures that we can recruit
and retain patients in dementia studies more easily.
Since its establishment in 2007 the CTRU’s reputation
for hosting clinical trials has grown and it has been
one of the top UK recruiters to six studies.
The dementia challenge: Prime Minister,
David Cameron, stated that,
“Dementia is the biggest challenge we face as a
nation” and issued his Dementia Challenge to all
trusts to refer 10% of patients into research. He also
pledged funding to research-specific staff, such as
dementia nurses. He also backed G8 Global Action
against Dementia to get more funding for dementia
research. This can only be a good thing for our patients.
Sussex Demographic
• Sussex has the highest number of people over
the age of 65 in the UK
• The prevalence of dementia is predicted to rise by
over 30% by 2021
Current Studies:
We currently have three infusion studies (intravenous
infusion of medication) which are delivered at Brighton
& Sussex University Hospital and five tablet studies (oral
medication) delivered at Grove House, Crowborough.
Promoting a positive patient and caregiver experience
Recruiting patients to clinical trials can take a long time
and the information sheets (listing side effects) for the
trial drugs can be daunting, so our research nurses take
time to visit patients and carers in their own homes.
Our research nurses discuss the study, go through the
information sheet and answer any questions. They want
to ensure people taking part are well-informed and
so encourage them to take time to discuss the study
information with their GP and consultants.
22
Dedicated to Research
Adult Mental Health and Research Unit (AMHRU), New Park House, Horsham
The Adult Mental Health and Research Unit (AMRHU) conducts research into a
wide range of mental health issues including conditions such as adult ADHD, mood
disorders and schizophrenia; interventions such as drug or psychological treatments
and non-interventional studies (such as observational studies).
Jenny Carr, Senior Support Nurse
Jenny makes sure that patients and
caregivers feel welcome throughout
their visit to the CTRU. She understands
that all the little things matter, such
as fresh flowers, lunch, a taxi to and
from the CTRU and making sure
they do not miss their favourite TV
programme.
As patients and caregivers are likely to spend around
four to six hours at a time with us during study visits,
it is important to ensure that they are comfortable
throughout and have someone as friendly as Jenny to
chat to and who understands the needs of a person
with dementia and their caregivers.
Enhancing the patient and carer experience in this way
also helps retain them in studies, which may last for
several years, visiting the CTRU at least once per month.
To some extent, caregivers are able to benefit from a
little respite in their caring duties, whilst Jenny assists
with the patient.
Patient feedback suggests that they enjoy their visits
and would take the opportunity to participate in research
again following their positive experience at the CTRU.
The CTRU is fortunate that the pharmaceutical
companies with which we work fund transport and
refreshments for both patients and carers. With Jenny
at their side, the research nurses are able to focus on
the clinical side of a patient visit which in itself, requires
a high level of concentration and detail to ensure
excellent patient care, highest quality research data and
attention to the protocol.
If you are interested in finding out more
about any of the CTRU studies please contact
us at: [email protected]
Or call: 01892 603107
One recent non-interventional study looked at the
prevalence of adult ADHD in a community setting,
and highlighted numbers of diagnosed and possible
undiagnosed cases. Although ADHD is best known as a
childhood disorder, it persists into adulthood in around
30–50% of cases and is often under-diagnosed.
Another industry-sponsored study has recently finished
at AMHRU, which looked at a new adjunctive treatment
in Major Depressive Disorder for those people with
inadequate response to antidepressant therapy.
Our results are not available yet as the study is still
running at other sites.
This study collected data on the numbers of cases
of adult ADHD, both diagnosed and also possible
undiagnosed cases. We are now awaiting the results,
which will hopefully help to raise awareness and
improve the long-term outcomes for those with
adult ADHD.
Decision-making in ADHD
One of the first studies to run at AMHRU was LYDO, an
industry-sponsored study run by Eli Lilly, which looked
at Atomoxetine as a treatment in adult ADHD. AMHRU
was the highest UK recruiter for this study, and was one
of the last sites to have active participants receiving
treatment.
We are pleased to announce that as a result of the
findings of this study, Atomoxetine has now been
granted its licence for use in the UK.
People with ADHD are impulsive and underperform in
key life areas as it plays out in low school achievement,
in higher rates of divorce, prison and low income.
Dr Neil Harrison has funding to try to identify the areas
of the brain that make decisions and to find out if this
was identified, could this help us to make less impulsive
decisions?
Recruits (with ADHD vs those without ADHD) will have
a brain scan once when taking medication and again
when not taking it. AMHRU have been helping to
contribute to this by referring interested participants
with a diagnosis of ADHD.
If you are interested in finding out more
about any of the AMHRU studies please
contact us at: [email protected]
Or call the main R&D office on 01273 265896
www.sussexpartnership.nhs.uk/r-and-d
23
Research Magazine ISSUE 4
Own Account Funding
Each year, Sussex Partnership Charitable Funds Committee dedicates £30k to fund studies (at a
maximum of £15k per study) that advance research within our research themes. The following
research studies have been awarded funding in 2014 and may become larger research studies in
the future.
Research Theme: Psychosis
Research Theme: Learning Disability
The development of a Youth Mental
Health help-seeking decision aid:
promoting help-seeking to reduce long
term disability.
A feasibility study exploring the possibility, safety
and potential benefit of developing a group peer
support service for adults with mild to moderate
learning difficulties.
Dr Kathryn Greenwood, Dr Rick Fraser (Sussex
Partnership and SPRiG) and Professor
Robin Banerjee (University of Sussex)
Study team: Dr Dee MacDonald (University of Brighton),
Ruth Chandler, Dr Jane Edmonds, Duncan Barron (Sussex
Partnership), Clare Ockwell (CAPITAL)
Background: Adolescence is a critical
developmental period. Major emotional,
physical, and cognitive changes (exploring
adult behaviours including smoking, drinking,
drug use and sexual intimacy) that occur during
adolescence can impact on mental health
outcomes in adulthood. Engaging young people
during this period of change and transition into
adulthood can help lay the foundations for the
development of behaviour carried into adult life.
Study aim: The aim of the study is to develop a
tool with a strong supporting evidence base, and
strong youth involvement, that young people will
fill in, to support them in their decisions about
mental health and their actions around helpseeking where problems arise. The tool will go
some way to closing the gap between service need
and use by young people in the transitional period
to adulthood. The tool itself is designed solely to
facilitate the young person to seek informal and/
or formal help, based on their identified need.
• The study will describe the range of mental
health difficulties experienced by young
people in order to develop distress and
difficulty threshold indicators to inform the
guidance part of the tool around appropriate
help-seeking and service provision.
• Results will be used to finalise the nonstigmatising, myth-busting, help-seeking
guidance part of the tool to facilitate help
seeking for young people.
• The final phase of the study will explore the
impact of the tool on help-seeking attitudes in
young people.
Background: A recent scoping study, conducted by the School
of Applied Social Science of the University of Brighton, found
that adults with mild to moderate learning difficulties, living
in community settings, identified a need associated with subclinical emotional support, or what they called emotional first aid.
They characterised this as a need for someone to talk to who
wasn’t a ‘professional’ (i.e not a therapist) who had an understanding
of the lived experience of learning difficulties: someone who
could listen without necessarily giving advice and who could be
trusted and be easily accessible. The emotional needs of adults
with learning difficulties have been little researched in comparison
to children and young people without learning disabilities.
Evidence suggests that children and adolescents with learning
disabilities demonstrate less emotional well-being and higher
levels of depression and anxiety than those without learning
disabilities. In relation to the general population as a whole,
people with learning disabilities have significantly higher rates
of mental health problems. The scoping study also explored
how current systems of support fail to meet the identified need
for sub-clinical emotional support. Participants highlighted
issues such as limited availability of clinicians, changes in
personnel and, in some cases, a lack of understanding or
training in issues related to emotional well-being.
Study aim: To assess the possibility, safety and benefit of peer
support as a means of providing sub-clinical emotional support
to adults with mild to moderate learning disabilities. The
study team will develop and deliver peer support training for
people with mild learning difficulties in Sussex, identifying key
enablers and disablers to effectiveness.
We will collective qualitative data from peer supporters and
people receiving the service to evaluate this. If findings suggest
that a peer support service for people with learning disabilities
is both feasible and beneficial, we intend to apply for NIHR
funding to develop a larger two site study.
The next round of own account funding closes on 26 September. For information contact [email protected]
24
Dedicated to Research