SUGAR

We have some exciting news to share with you regarding our friends from Hamburg, Germany. As some of you may remember we had a visit from Professor Candelaria I. Mahlke and her colleagues from the University of Hamburg a couple of years ago as they were looking to us for some inspiration to start their own service user research group. I’m delighted to be able to share with you the recent email from Candelaria letting us know the good news:

“Dear SUGAR members,

Our visit at the SUGAR meeting in London two years ago  (already?!) left a big impact.

We started a SUGAR group in beginning of 2016 with a small foundations funding, as part of the so called EmPeeRie Project. The group itself is called EmPeeRie NOW (Nutzer Orientierte Wissenschaftsberatung – meaning user oriented research guidance – they came up with the name themselves)

EmPeeRie is from the German word “Empirie”  (scientific) knowledge based on observation and experience – but it had a shift in meaning more to research based. We wrote it with PeeR to have the peer-thought in there.

The project is located in the university medical centre – so not at the University but belonging to it in a clinical context with lots of research groups.

Great on the other hand is the feedback from the users and two care takers, who are also joining the group to insert the family perspective. They all say that they feel it`s de-stigmatizing to join the group and being part of, and influence research.

As another part of the EmPeeRie Project we are funding small research projects by users themselves, very interesting work as well (and challenging) and I`m learning a lot.

Thank you again for this inspiring meeting, the SUGAR group this way moved something here in Germany 🙂

Best wishes and a happy and inspiring 2017.”

Candelaria.

Everyone here at SUGAR sends their congratulations and very best wishes to our colleagues in Hamburg and hope their group grows as SUGAR has and is a big success in Germany!

On the 14th September 13 SUGAR members and City University of London staff travelled up to Nottingham to attend the 22nd International Network for Psychiatric Nursing Research (NPNR) Conference 2016.  Most of the group stayed in the Crown Plaza hotel which was beautiful and the staff were extremely friendly.  The hotel was only a stone’s throw away from the conference centre so we could walk there and back without any difficulty. Some of the group also took the chance to explore Nottingham a little in their spare time while others preferred to relax in the hotel’s sauna and swimming pool!

This year the SUGAR workhop carried on from the previous year’s Dragons Den winner (Cher Hallet) and looked at how her proposed study into Intra Muscular medication administration had been developed into a full research proposal. It was quite a tough year in terms of competing for the audience members attending as so much was going on at the same time as our workshop but the people who did attend engaged very well and were all extremely impressed with Cher’s passion surrounding this project and the input SUGAR had into helping her and the team get it off the ground.

Jay Hudson and Sally Barlow were also both members of the “Tweet Team” who were tweeting on behalf of the Mental Elf Service and the conference as part of a new initiative. This helped those people who could not attend the conference keep up to speed hence making it more inclusive and user friendly.

We had good feedback from people at the conference and everyone was impressed at just how active the SUGAR members were in asking questions in workshops covering a range of interesting and sometimes sensitive issues. The drawings accompanying this short blog are once again courtesy of our very own excellent artist Michael Ahern!

On Wednesday 5th October East London Foundation Trust presented a mental health research day where they invited SUGAR to have a stall promoting what we stood for and how we advised on research as service users and carers. The day was organised by Professor Stefan Priebe and his excellent team including Karin Albani who promotes and plans the event every year. Both have strong connections with SUGAR and are firm supporters of our group.

This half-day conference had the format of very brief presentations on a wide range of research projects that are being conducted in the Trust. Thus, you got information on 14 different projects, ranging from epidemiological studies to clinical trials and qualitative work.

Alan Simpson, Michael Ahern and Claudette Brandon were there representing SUGAR and giving out booklets and engaging with researchers, clinicians and other professionals in the mental health field to promote the good work we do in our monthly SUGAR meetings. Below are some pictures of our stall taken on the day.

We were delighted to see our frieds from Japan on Thursday 29th September when they paid us a visit for our monthly SUGAR meeting.

Prof Kazuyo Kitaoka is based at Kanazawa University and Prof Kayoko Ohnishi, at Sonoda Women’s University in Hyōgo, Japan.

Both have visited before and have set-up a mini SUGAR Japan, which is more of a peer support project and they have sent us a video clip before to use at a conference.

This time they brought a new person, Junko Katsuragawa, who has been awarded a fellowship and is keen to establish a similar SU research group along the lines of SUGAR. Stigma is MUCH more of an issue in Japan so this is a massive shift.

We had a lovely time together and exchanged gifts and they were extremely generous as always. They seemed very impressed with the group dynamic and were keen to know about how we went about recruiting for new members and how well we managed a large group and for everyone’s voice to be heard.

We’re very glad to say they had a safe journey back to Japan and who knows, one day we could be visiting them to see just how far their own service user group has developed……

On Wednesday 16th September, members of SUGAR and staff met up at Euston station for the journey up to Manchester’s Pendulum Hotel for the 21st Network for Psychiatric Nursing Research (NPNR) conference. In all, 11 SUGAR members attended the conference along with several members of staff from City, some of whom were also presenting at the conference.

The SUGAR workshop this year was Dragons’ Den themed, as seen on TV! Researchers who had an idea for a project would ‘pitch’ that idea to five Dragons (members of SUGAR), and a winner would be chosen based on the research idea and how well they’d thought about the involvement of service users and carers, the potential to improve care, and ethical considerations. The winner would be invited to meet the SUGAR group and would receive ongoing support and advice throughout the duration of their project.

The three researchers who were brave enough to enter the SUGAR Dragons’ Den were Laoise Renwick, Jason Hickey and Cher Hallett.

The SUGAR Dragons judged that Cher’s research idea had all the ingredients required to make her project idea the winner. Cher, who is a newly qualified mental health nurse, had the idea of a research project to evaluate current practice in the administration of medication via intra-muscular (depot) injections. Cher felt passionate about this subject having witnessed the disparity between best practice, which she had been taught on her course, and the reality of the practice she was seeing in clinical settings. She also voiced concerns about the lack of evidence from service user and carer perspectives regarding how they experienced the injections, given the widespread use of depot injections in mental health care, and the importance of maintaining service users’ dignity during treatment.

If you’d like to read more about the conference, Dr Ben Hannigan, one of the organisers of NPNR 2015 wrote an excellent summary on his blog. There’s also a piece about the wider impact of City University London’s Centre for Mental Health Research staff at the conference on the City website, which you can read here. East London NHS Foundation Trust have also featured SUGAR at NPNR in their latest Research & Development (R&D) newsletter (see page 5).

So here we are at the end of another year for SUGAR, which has seen plenty of change. Since September 2014 we have had 10 meetings with 11 service users and carers’ attending. SUGAR have had over 20 different speakers who have wanted, and received, honest feedback on their projects. The group really have had an awful lot of positive responses from literally all of the speakers who have attended our meetings.

During the last year we have also had visitors from Belgium and Germany who have shown an interest in setting up their own version of SUGAR. This is of course a huge compliment to each and every member of SUGAR, as our guests saw how well we worked as a group and the respect that there is between us in the room, even when people are giving their own personal honest opinions about a topic.

Last September 8 SUGAR members and several staff gave a workshop presentation of our work at the 20th NPNR Conference at Warwick University, which was extremely well received. This workshop was repeated at the School of Health Sciences at City University London in January 2015 to a sell out crowd! This year we have had an abstract accepted to present a “SUGAR does Dragons’ Den” workshop at the NPNR Conference in Manchester and hope to take 11 – 12 SUGAR members to attend this leading two day research conference.

In February of this year David Thomas was appointed as the new SUGAR Administrator. Since then he has organised 6 meetings and said:

“ I am very much enjoying my time as the SUGAR administrator and am looking forward to attending my first NPNR Conference in September. The actual SUGAR meetings themselves have been of a very high standard and i have certainly learnt a lot from the group about research, as i had no real background in this area before joining. I myself am a service user, so have found the discussions and debates we have on various topics fascinating because i can relate to and hopefully contribute to the discussion quite a bit.

I’ve found the members of SUGAR all so friendly and welcoming, it really is like a big family. We all know how it feels to have bad days, weeks, months, and i think that is an important bond between us all. Sometimes Clinicians or even researchers into Mental Health may not be able to relate to us because they may never have experienced the true pain and utter despair mental illness can have on somebody.

Finally i’d just like to say a massive thank you to all the staff that work on the SUGAR project. They have been exceptionally welcoming of me into the team and i truly couldn’t ask to be working with better people.”

In April/May of this year SUGAR also recruited 4 new members, 3 service users and one carer. So far they have been to 2-3 meetings each but have been extremely positive and confident with their contributions in discussions and we are delighted to have them on board.  It was in fact one of the new members, Joynal, who gave Julia Jones the idea for our Dragons’ Den workshop this year so they have all certainly made an instant and impressive impact.

SUGAR have also been invited to join other service user reference groups such as MindTech from Nottingham University and a group called NewMind from the University of Manchester.

So SUGAR shows no sign of slowing up or even flatlining. With new blood in the group and the members figures now up to 16, SUGAR is evolving as a group should and looking to all the exciting new things the group can do, rather than resting on our laurels we are expanding. With ever more interest from researchers wanting to present at our meetings we are getting booked up months in advance because word is spreading of our good work. SUGAR is going from strength to strength and shows it has a very bright future in front of it for a long time to come. Congratulations to all of the members who have made this year such a success!

On Tuesday 7th July, myself, Sally Barlow, and SUGAR members Michael and Mandy all met up at Kings Cross Station where we walked to the National Council for Voluntary Organisations (NCVO) to meet up again with our friends from MindTech.  Unfortunately our friend and fellow SUGAR member, Jay who  arranged the original meet between ourselves and MindTech up in Nottingham, could not attend on this occasion. 

MindTech are currently working with some engineering and science researchers at the University of Manchester (a group called NewMind) to develop a ‘roadmap’ for the science research needed to meet the future aspirations of how technology can support people with mental health problems.As part of this process, they were co-hosting a workshop to focus on what service users and carers want from technology in order feed this into the road map. It was an invitation only event, attended by some of the large mental health charities as well as a number of lived experience advisors. 

                                   The day was a big success and there were some very interesting new innovations that could change the daily lives of people living with mental illness. There were lots of people there from different organisations and charities that were interested in how SUGAR ran as a group, so we managed to do some good networking while we were there, spreading the word of SUGAR! Throughout the day Michael, our very talented artist, was drawing and you can see these illustrations throughout this thread. Finally a big thank you to Lucy Simons of MindTech for inviting us and to Dan Morley and Professor Chris Taylor of Manchester University for hosting such an enjoyable workshop.

Safewards interventions (includes SUGAR) 

Hello to all SUGAR members and followers.

The SUGAR group was initially established by Professors Len Bowers and Alan Simpson to contribute to the development and testing of a package of interventions designed to reduce levels of conflict and containment on acute mental health wards.

Throughout the five years of the research programme, Len Bowers and his colleagues regularly consulted with members of SUGAR on various aspects of the study including the choice of interventions. That package of interventions became known as Safewards and you can find out all about them here: http://www.safewards.net/

The research study demonstrated that implementation of the Safewards interventions led to significant reductions in levels of conflict and containment compared with those wards providing usual care. It was concluded that simple interventions aiming to improve staff relationships with patients can reduce the frequency of conflict and containment.

Mental health nurses in numerous countries across the world are now learning about Safewards and implementing these and other innovations locally.

In recognition of SUGAR’s contribution to this successful study, SUGAR are named authors on the journal paper reporting the results recently published in the International Journal of Nursing Studies. You can read the paper here http://openaccess.city.ac.uk/12210/.

Take care all,

Alan Simpson.

I would just like to take this opportunity, on behalf of the whole SUGAR group, to welcome our four new members.

It was Philip’s, Syeda’s and Zhenreenah’s first SUGAR meeting in May and we were delighted with their contributions to the discussions of the day. We also have Joynal on board, who has now attended two meetings and was the inspiration behind the idea of having a Dragon’s Den theme for our workshop at the NPNR Conference.

So the future of the SUGAR looks very bright as we continue to develop and grow as a group.

Best wishes to you all.

David.

At the crack of dawn on a fresh spring morning in March, SUGAR members assembled over a cup of coffee in St Pancras International train station, London, ready for a trip out of the Big Smoke up to Sherwood Country. The SUGAR members were Jay, Michael and Mandy, alongside David (SUGAR administrator) and Sally (Research Fellow). This was a greatly anticipated trip after acceptance of generous invite from Lucy Simons and Nick Shelley from the MindTech Reference Group.

MindTech are a group based at the University of Nottingham who are interested in the technology that can now be used in the treatment of mental health. They wanted to know how we run our group as they want to have similar service user input advising on the research.

MindTech got in touch with SUGAR, inviting us to speak on how our group works. On the 18th March 2015, SUGAR went to the University of Nottingham to meet the members of the MindTech Reference Group (Michael).

Lucy Simons, a Research Fellow in the Institute of Mental Health, introduced us to some of the projects that MindTech are advising on, such as ‘The Big White Wall‘ grant application, and introduced us to the themes within their research stream. These are: dementia, mood disorders (such as depression and anxiety) and neurodevelopmental disorders (such as Tourette Syndrome and Attention Deficit Hyperactivity Disorder) (Sally).

We presented how SUGAR works and a couple of members of our group, Jay and Mandy, spoke about what SUGAR meant to them. I spoke about our booklet, and about the NPNR conference at the University of Warwick last year (Michael).

SUGAR members spoke about the establishment of the group, training and development, projects that SUGAR have advised on, and our publications and conference presentations.  Jay and Mandy gave an excellent overview of how the different skills of the SUGAR members are used to support the group dynamics and develop a better understanding of how mental health should be researched with user involvement.  Jay was instrumental in bringing the two groups together through her contact with a member of MindTech (Iain).

Nick Shelley, Chair of MindTech, gave the SUGAR members some feedback on the fantastic work they’d been doing, saying that the work was “inspirational”.

Apart from giving us all the valuable information about your activities, you showed us how well you work as a group. As well as getting great results, you obviously have a lot of fun – that can’t be bad!

Throughout the visit Michael (SUGAR’s resident artist) was scribbling away adding to his portfolio of SUGAR related artwork. Some of these pictures are displayed within this blog.