Service User and Carer Group Advising on Research

Hi to all SUGAR members and followers.

Please have a look at the link below which gives details of the upcoming Centre for Mental Health Research seminar, in which SUGAR give their hour long Workshop Presentation.  Please feel free to share with people and invite them along.

Look forward to seeing everyone on the 20th!


March 23, 2015
by David Thomas

Some bitter SWEET side effects!



You may experience one or more of the following symptoms:

Dry mouth, palpitations, insomnia, euphoria, syncope, weight loss, dyspepsia, idiopathic craniofacial erythema, tachycardia, impaired concentration, amnesia, panic, abnormal dreams, excitability, paraesthesia, vasodilation, glossolalia,hallucinations, endorphin rush, low serotonin.

Tentative, preliminary diagnosis; you’re falling in love.

By Richard Humm, Honorary Research Fellow, City University London, and SUGAR member.

February 16, 2015
by Alexandra Thornton

New addition to the team!

We’re very pleased to announce that SUGAR now has its own administrator! David has worked for East London NHS Foundation Trust and Mind, and we’re all really excited about this new development for the group.

David has experience of being a service user himself and also working with other service users at Mind. Last year he set up, and now facilitates a group for service users who have had in the past, or are still having, problems with substance misuse and mental health illness.

David is extremely passionate in feeling that all service users have their voices heard and about challenging the stigma surrounding mental health and addiction in society. David said “In my opinion, stigma is something that needs to be urgently addressed, and service user involvement and the work of SUGAR is an important way in which we can educate people of the facts and not the myths that are often portrayed about people with mental illness and addiction problems. I am looking forward to working on this exciting SUGAR project and meeting all of its members in due course.

Welcome to the team David!


February 5, 2015
by Alexandra Thornton

Your dose of SUGAR for January, and a sweetener for February!

After a lovely break for Christmas, during which we hung up our research hats for an afternoon and went out to enjoy a meal together, it was back to business in January with three very different projects to consult on. All of our visiting researchers came from East London NHS Foundation Trust (ELFT) and Queen Mary University of London (QMUL), and are based at the Unit for Social and Community Psychiatry, Newham, which is part of the Wolfson Institute of Preventative Medicine.


First, we welcomed PhD student Sophie Walsh, who is developing an app-based wellbeing intervention for people living with depression or anxiety. The group discussed the basics of what they thought would, and would not be helpful features of such an app, and thought about what kinds of groups may benefit from using it.


Dr Domenico Giacco, a psychiatrist interested in improving the experience of involuntarily admitted service users asked for SUGAR’s views on a proposed intervention, and Dr Victoria Bird asked us to examine draft interview questions for a large Europe-wide project exploring different models of care delivery. There were lots of views expressed, particularly around the experience of involuntarily detained service users, which Domenico said “further increased my confidence that the topic of my proposal is of importance and I received many helpful suggestions on which I will capitalise whilst revising the application”.


The schedule for our next meeting on the 26th February has already been set. Dr Rose Thompson, a researcher based at ELFT/QMUL, is coming to obtain some input from SUGAR on her proposed project, which aims to explore how the ethical issues faced by workers hoping to support service users to develop close, supportive relationships may be managed, which is sure to turn up some interesting discussions.


We’re also going to take some time to plan a few bits for the future, before hearing from Dr Chris Flood. Chris is a mental health nurse at the School of Health Sciences, City University London, with close links to ELFT. He’s looking to gather the thoughts of SUGAR about the merits of his proposed project, which will explore the effects of violent assaults at work on mental health workers. Chris is particularly keen to get SUGAR’s views on whether increasing our knowledge in this area will positively benefit service users and carers.


January 27, 2015
by Alexandra Thornton

Holocaust Memorial Day

The 27 January,  the anniversary of the liberation of Auschwitz, is Holocaust Memorial Day. We should remember that among the first to be singled out by the Nazis for sterilisation or euthanasia were those classed under their Eugenics theories as ‘living but unworthy of living’.

In July 1933, only months after Hitler took power, the Law for the Prevention of Hereditarily Diseased Offspring was proclaimed. This and later ‘Racial Purity’ decrees announced at Party rallies in Nuremberg resulted in the forced sterilisation or gassing of hundreds of thousands of people with disabilities, people labelled schizophrenic or manic-depressive, deaf and blind people.


Richard Humm, SUGAR member and Honorary Research Fellow, City University London

November 28, 2014
by Alexandra Thornton

We’ve been busy…

Just three months into the new academic year, and haven’t we been busy! We’ve wowed the crowd at our NPNR workshop, and consulted on three different projects.

We’re excited to be supporting Aysegul Dirik with her proposed project that looks at carer involvement in mental health inpatient settings, an ongoing partnership that we hope will really maximise the potential of the study to improve support for both service users and carers.

Professor Stefan Priebe, along with Dr Vanessa Pinfold and Dr Thomas Kabir from the McPin Foundation visited us in October to ask for our views and ideas about their proposal for a large project that aims to improve the social links of service users to their communities.

Yesterday, we heard from colleagues Dr Kathleen Mulligan and Dr Mark Haddad at City University London who hope that their proposed new survey of service users and staff, which complements an interview study funded by Barts Charity, will help healthcare professionals to develop their understanding of the issues around the self-management of diabetes in service users.

We also heard from PhD student Karen James about the findings from her study, which explored inpatient nursing staff views of self-harm and harm-minimisation practices. Karen consulted with SUGAR at the outset of her work and has kept in regular contact throughout.

As if that wasn’t enough for us to be getting on with, we’ve also been setting goals around our own development as a group, and developing our presentation skills. Phew! Bring on our Christmas lunch celebration – we seriously need to spend some time patting ourselves on the back for all of our hard work and achievements this year!

September 26, 2014
by Alexandra Thornton

NPNR Workshop

SUGAR members and staff from the School of Health Sciences at City University London collaborated on a stimulating, fun and informative workshop at the 2oth international Network of Psychiatric Nursing Research conference, at Warwick University on 19th September 2014.

Entitled ‘SUGAR in Everything!’, the workshop explored all six themes of the conference using a range of methods that included spoken personal accounts of involvement with SUGAR from members and researchers; video contributions from collaborators Professor Len Bowers (London), Professor Kazuyo ‘Kay’ Kitaoka (Japan) and Dr Leonie Cox (Australia); a colourful booklet in comic style; a giant sugar cube dice and an incredible ‘Come to SUGAR’ rap.

Themes addressed included contemporary practice in mental health nursing research; innovation in teaching, learning and practice;  involving people – where has it got us?; building new knowledge for effective practice; methodologies, methods and magic; and reflections and reminders.

The atmosphere was buzzing and the SUGAR workshop was praised by many attendees and received good coverage on Twitter via the hashtag #NPNR2014 and username @SugarSolution.

Thanks to all who contributed to preparation and on the day, and to those who attended.

What is SUGAR?

August 22, 2014 by Alexandra Thornton | 0 comments

“Nothing about us, without us”

SUGAR (Service User and Carer Group Advising on Research) was founded in 2009 by Professors Alan Simpson and Len Bowers, and their colleagues in mental health nursing research at City University London. The researchers were keen to further develop service user and carer involvement across their programme of research and build long-term collaborative research relationships with members of local communities in east London.

They wanted to ensure that a range of voices from those with lived experience of mental health services was heard in a systematic way by those conducting research into mental health nursing and services. Inspired by the motto ‘Nothing about us, without us’, SUGAR was created. The group currently consists of 13 service users and carers and meets with various mental health researchers once a month. Training and development is provided and meetings are facilitated by members of the research team.

SUGAR members discuss and contribute to various aspects of research projects and the research process and have also written journal papers and given conference workshops, presentations and posters.

SUGAR has hosted a number of international visitors and recently won a national award for public engagement by universities. They hope to inspire other researchers to follow their lead and add SUGAR to their work.

SUGAR’s services are available to researchers working within East London NHS Foundation Trust, City University London, and those collaborating on projects with City University London academics, subject to prior discussion and arrangement with Prof Alan Simpson.

If you would like to learn more about SUGAR, or are interested in working with us, please contact us or follow us on Twitter.



Twitter: @SugarSolution

Prof Alan Simpson


Twitter: @cityalan


Acknowledgements and disclaimer

The SUGAR project was commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research (PGfAR) scheme (RP-PG-0707-10081) . This grant funded a programme of research led by Professor Len Bowers, entitled ‘Reducing Conflict and Containment in Psychiatry’. SUGAR was established in 2009 and is facilitated by Professor Alan Simpson.  From October 2014, SUGAR will be supported jointly by the School of Health Sciences, City University London and East London NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, the Department of Health, City University London or East London NHS Foundation Trust.

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