Service User and Carer Group Advising on Research

September 15, 2014
by Alexandra Thornton

NPNR here we come!

Preparations are being finalised for our workshop presentation at the 20th International Network for Psychiatric Nursing Research (NPNR) conference, being held at the University of Warwick on the 18-19th September. Eleven of us will be heading up from London to dazzle the world of mental health nursing with our interactive workshop. Workshop attendees will be treated to an array of audiovisual delights, discussions and will also receive a copy of the SUGAR booklet, hot off the press! We hope to further convince researchers that adding a spoonful of SUGAR at different stages of the research process will sweeten their research and make any practical implementations more palatable to people who use mental health services (puns intended!). If you’re coming to the conference, please join us at 1pm in room 38 on Friday 19th September. We look forward to seeing everyone there!

August 22, 2014
by Alexandra Thornton

Guest blogger Professor Len Bowers talks about SUGAR’s contribution to the Safewards study

Guest blog post from Professor Len Bowers, Institute of Psychiatry, Kings College London

SUGAR contribution to Safewards study.

The group contributed in different ways to different stages of the Safewards project. Read more about the project here.
Ethics: The preparation of an ethics proposal for a cluster randomised controlled trial was complex and a sensitive issue, especially as we proposed to ask only for staff consent, and for the Trust CEO to give signed consent on behalf of the patient on the ward. As part of our application we developed and ethics statement. SUGAR spent a session consulting on the underlying issues, and this discussion was summarised in the ethics statement – including the opposing views voiced in the group.
Intervention generation: Ideas for interventions were checked out with the group at an early stage. Sometimes this involved significant work, such as a whole session that was taken up with discussing the nature of patient requests to staff, and a workable format for a ‘request book’ that could be presented in a respectful way and that maintained patient confidentiality. At other times the group contributed to a lesser but still significant degree by assisting in the identification of patient-friendly titles for the interventions and what we were trying to do. Most critically, for several of the proposed interventions SUGAR created guidance on the actual content or composition of the intervention. They helped to identify contents for the calm down box. They devised a long list of potentially positive aspects of patients and their behaviour that staff could draw each other’s attention to as part of positive words. And they generated a lengthy list of potential ways that patients could help and support each other on the ward, for inclusion in the mutual help meeting. These were all critical and important contributions for the success of the Safewards interventions.
Intervention selection: SUGAR formed part of the formal consultation process that led to the selection of the final 16 interventions that were included in the pilot study. Their consultation occurred after the two groups of professional experts had met to consider the shortlist of 30 interventions. SUGAR made a distinctive contribution at this stage. They overruled the professional experts and insisted on the inclusion of two interventions rated much lower by the professionals.

Watch videos explaining the Safewards model and its implementation in different mental health settings on their YouTube channel here.

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.