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.

March 2, 2015
by David Thomas

Isaac’s sweet road to recovery.

For me, too much Sugar can never be a bad thing! My road to recovery and management of my mental distress that affects me in ways that I would never wish on anyone, has been made so much brighter and easier due to my dear friends at Sugar. Not everyone will have the opportunity to ever need to express the pain that comes with the fact that sometimes one’s own mind plays games that make you feel quite alone and different. One’s moods can be up and down like a roller-coaster, and you never know which turn will come next: the up, or the down?

I feel that I have a gift that I would like to share with you all. Here we go. So we are in the early stages of the new year; sometimes I feel like ‘Not another year that my mental health is affected by things that my peers just brush off like they are nothing’. For example, just going down the pub with a friend takes some planning and real effort. Sometimes when the darkness of depression creeps in through the open window of life without warning and without reason, this chemical imbalance that makes me feel as if getting up out of bed to look at the tree outside my window is like climbing to the top of the tallest tree, forever in the darkness. Climbing this tree will be something that will, I am guessing, be a part of the rest of my life, as it has been for so many of these past 16 or so years. Except now I know that I will no longer be trying to climb to the top of the tree alone, in the darkness. I had a ‘eureka’ moment: things changed for me when I became a member of Sugar.

It occurred to me just after I had taken down the Christmas tree. It was adorned with all things wonderful, more so it was celebrated with the love and care that I have found with our group called Sugar. This tree was symbolic for me, this year more than most, as for the past 10 years I have been someone that has spent most of Christmas locked in my room under the covers where the Christmas monster couldn’t get me. This was because I had lost all my power. When you have been unwell and have had to adjust from the life you imagined you would have had to the reality of the life that is marked by extreme highs and lows, well, quite frankly it left me feeling very different and unlike my peers. So when everyone would gather round the Christmas tree, I would retreat to the safety of my own room where I could just be me.

This year I can look back as say this has been very difficult, and even though each day is unlike any other and sometimes I need that helping hand to make the best of my day, this has come about due to a gift that has been bestowed on me by being a member of Sugar. This name has been as far-reaching as Japan, the USA, and Australia.

Now, today, I feel quite poorly and am looking out of my bedroom window at the trees outside as they get ready to start a new year of growth. Even though this year has been, for my personal tree, harsh and hard, my tree has weathered the storms not quite knowing if it would withstand them totally or how battered and bruised it would emerge. I have come through these storms ever so much stronger and have been able to call upon the skills of other trees that have seen their way into my life for many different reasons. My friends at Sugar will never know what they have done for me. They have given me the space to feel loved, accepted and supported, and like I can make a difference. Everyone in our Sugar family has enabled me to become more robust. My tree has strong roots which come from a place of all the different challenges that each member has experienced and subsequently shared with me. The word ‘selfless’ comes to mind when I think of the sharing and support that my Sugar family have given me. When I have listened to narratives that have come from the different members of our group, be that someone who has accessed services or a carer, it has added a ring of growth to my tree. This ring has been born of pain, love, and hope, and the courage to share and believe we can make a difference through the work we do. This year has been my annus horribilis and a life-changing year for many reasons. However, I can look back and remember that this was not all doom and gloom, but a lesson with gifts that have been bestowed on me by Mother Nature. It has subsequently given me the strength and fortitude to keep going and grow with the mindfulness that I have so much to give, receive and share. I have been helped and supported by my Sugar family, from the kind words of a member, to the knowledge that once a month I will see the same face that looks at me with deep, wise eyes born from the same values of making a difference to people who access mental health services, as well as carers.

As you may know, I am someone who will not, nor cannot, turn a blind eye to injustice and will always try to do my best for others. I need to proclaim this is my life’s mission, which is made all the easier because of your love at Sugar; the support and encouragement that has helped my tree to develop robust roots has come from all the gifts that have been given to you by your loved ones and subsequently you have shared with me, whether intentionally or not.

I would like to take this opportunity to say thank you for touching my heart and that you have given me some gifts that have, in turn, been given to others. We’ll never really know what we have done for the world but I am sure we have done what we can.

Never underestimate the power of Sugar when you need to climb a tree.

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!

November 21, 2014
by Alexandra Thornton

A sweet new partnership!

The eagle-eyed amongst you will have noticed that from October 2014, SUGAR’s activities have been supported by a joint partnership between City University London’s School of Health Sciences and East London NHS Foundation Trust (ELFT). We’re very excited about this new alliance, as it opens up our services to researchers employed by the Trust, and will therefore enable us to increase the quality and quantity of service user and carer input into the mental health research happening in our ‘back yard’. We now have our own page on the ELFT website, and are also featured in the Trust’s R&D Autumn 2014 Newsletter. This is the start of something sweet – we can feel it!

October 6, 2014
by Alexandra Thornton

Isaac Samuels’ blog

A little sugar can make all the difference; the doctors might not agree.  When I was lost and could not make a sense of whom or where I was going, a dear friend, June, asked me to put myself forward to attend a meeting that was set up to advise on research.

I was sitting there thinking, “What would they need someone like me for? I have no clue about research. What can I offer? I have no skills, nor do I have anything interesting to offer.  What do I know about mental ill health research?”

How wrong could I have been? Over the years I have been involved in SUGAR I have seen the hardness that has come from the stigma of accessing mental health services. To lose your own mind and to have all rights taken away from you because your own mind does not seem to be working in the same ways as it once did is the most painful thing to have to deal with.

Not making people feel worried about why you are talking so fast, why you have emailed everyone with strange emails, the overspending and reduced inhabitations are symptoms for this illness that changes you from the person that people want to be around to the person who is not quite right. I lost my lovers, peers and job when I became unwell, along with my self-esteem.

I got it back by coming to SUGAR.

Why, if I was a doctor I would be writing prescriptions for SUGAR, is because the action of coming together with people that have been through situations that I have been through, knowing that part of the research has been driven by the action of storytelling and the narrative of your mental ill health journey, has been really helpful in my recovery. I have been noticing that telling your own story actively, and being listened to by your peers, as well as  people that can make a difference to others by using the richness of your story to ensure that others are able to access services that meet their needs can be a powerful facilitator of personal recovery. I call this the SUGAR model.


The SUGAR model

Step one: Collaboratively working as peers with a wide range of people, placing you as the expert.

Step two: Stories telling the narrative of your mental health journey to support change.

Step three: The validation of your lived experience by others and peers. This includes key stakeholders such as carers and mental health professionals, who may have historically had some discourse when it comes to being considered your peers.

Step four:  Making a difference, knowing that you are the only one who can provide this narrative to enrich the research and/or recovery work.

Telling your story

Narrative model of recovery

Isaac Samuels 2014 c


Keep posted for more on my SUGAR blog and more on my model that supports recovery.

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.