Bipolar Disorder Mood Disorders Research Annual Newsletter 2016/17 BDRResearchN Network

Photograph taken by Professor Nick Craddock

Welcome to the 2016/17 edition storyline, and Clare Dolman of relationship between mood of the annual Mood Disorders Bipolar UK updates you about that disorders, sleep and other aspects Research Newsletter. on page 11. of physical and mental ill-health.

It has been another busy and As always, we want to say a really We continue to welcome many productive year for BDRN. You will big THANK YOU to our research new participants to BDRN, so if you find updates about some of our supporters, particularly to those know anyone with a mood disorder recent research findings on page who continue to give up their time who hasn’t taken part before let 2, including groundbreaking work and effort to participate in our them know about our work – we we are doing with other mood studies - without your help the would love to hear from them. We disorders research groups from research just could not happen. are offering our mood-monitoring around the world. You will read on system True Colours (see page 8) page 8 about some of the ways we We’ve included a new set of to all our participants so if you have been working hard to spread questionnaires with this newsletter haven’t signed up yet and you the word about the importance of and we would be very grateful if would like to try it let us know. research into mood disorders. our participants would complete them and send them back in the We hope you enjoy this newsletter, We were delighted to provide pre-paid envelope. In particular, and from all of us in BDRN we wish expert advice to BBC EastEnders this information will help us you all the very best for the new about their to understand more about the year ahead.

The Mood Disorders Research Teams

Cardiff University Professor Nick Craddock, Professor Ian Jones, Dr Liz Forty, Christine Fraser, Katie Lewis, Holly Pearce, Rebecca Lynch University of Worcester Professor Lisa Jones, Dr Katherine Gordon-Smith, Sarah Knott, Amy Perry, Lizzie Ludlow www.bdrn.org Some of our latest research findings

Our research has led to a studies were also used to was associated with having number of publications over the investigate whether there is an experienced specific traumas in past year. These studies have all association between rare CNVs childhood, which may open new contributed to our knowledge of and major depression. We did avenues in clinical interventions. the genetic and environmental not find an association in the (Journal of Affective Disorders; causes and triggers of mood sample as a whole although 2016 volume 190, pages 764- disorders and will be important these rare genetic variants may 771). in determining the direction of play an important role for a future research in the field. minority of people who have We conducted the first study unipolar depression. (Biological looking at whether trauma in In a large collaborative genetic Psychiatry; 2016 volume 79, childhood might increase risk study with researchers in the pages 329-36). for postpartum psychosis in United States we have found adulthood. Unlike in postpartum that variations in DNA called Many readers of this newsletter depression, we found that rare copy number variants will have completed a childhood trauma does not (CNVs) are likely to play a role in questionnaire asking about play an important role in susceptibility to mood instability, analysing the the triggering of postpartum in some individuals (Molecular questionnaire scores we found psychosis suggesting biological Psychiatry; 2016 volume 21, rates of mood instability to factors are more important pages 89-93). be particularly high in bipolar (Journal of Affective Disorders; disorder compared to major 2016 volume 205, pages 69-72). Data collected for the depression. Among individuals Depression Case Control (DeCC) with bipolar I disorder, greater and Depression Network (DeNT) mood instability in adulthood

Papers have been published in Biological Psychiatry (2016 volume 79, pages 329-36), Journal of Affective Disorders (2016 volume 190, pages 764-771 and 2016 volume 205, pages 69-72) and Molecular Psychiatry (2016 volume 21, pages 89-93)

2 BDRN at the University of Worcester

Many of you hopefully received we’ve got our fingers crossed), Management Group, said “I a letter from us earlier in the and mental health is one of the am absolutely delighted. The year letting you know that our University of Worcester’s main University of Worcester is Mood Disorders Research Group research priorities. providing superb support for based in Birmingham has moved Professor Lisa Jones and her to the University of Worcester. Professor Lisa Jones, who leads team. I have no doubt that this the group in Worcester, said will make the collaboration with For many years BDRN has been “The University of Worcester has Professor Ian Jones and his team a close collaboration between given us such a warm welcome. in Cardiff even more effective. members of the team based The University provides a This is great news for BDRN, our at Cardiff University and the wonderful environment for research and our participants.” University of Birmingham. The work of BDRN continues exactly as before, with the teams at Professor David Green, Vice Cardiff and now Worcester Chancellor and Chief Executive working closely together. of the University of Worcester, said “We are delighted to Members of BDRN who are welcome BDRN to the University now based at the University of of Worcester and look forward Worcester are Professor Lisa to this important research into Jones, Dr Katherine Gordon- the causes of mood disorders Smith, Sarah Knott, and Amy continuing to grow and make a Perry, and we are delighted to Professor Lisa Jones difference to people’s lives.” introduce you to a new member of the team in Worcester, Lizzie BDRN to continue to thrive. We Ludlow (you can find out more were particularly attracted by the about Lizzie on page 7). University’s clear commitment to mental health research.” We are all thrilled about the move. The University of Professor Ian Jones, who leads Worcester is an ambitious the group in Cardiff, said “With young university which has this exciting development and recently been shortlisted for the the ongoing support of all our prestigious annual University participants, I’m sure BDRN will of the Year award by the Times go from strength to strength.” Professor David Green Higher Education (the winner has not yet been announced so Professor Nick Craddock, BDRN

www.bdrn.org In our last newsletter we told you about a new and innovative online mood monitoring system called True Colours that is now available to all our research participants.

True Colours is an easy-to-use online technology that enables individuals to monitor their mood in an active and ongoing An example of a graph produced by True Colours way. night how many hours sleep did research. The system works by sending I get?’ email prompts asking individuals Everyone’s experience of mood to answer simple questions Over 800 BDRN participants disorder is different, so the more about their mood that take have already started using True people who help us the better no longer than 5 minutes to Colours and we have received we will be able to understand complete. It really is very simple lots of positive feedback, but we the complex patterns of mood to use and if you have any would like as many participants disorders over time. problems using the system we as possible to use the system are always here to help. as we are hoping to get the We have recently presented experiences of at least 2000 some initial data on True Colours Answers are converted into a individuals. at the 18th Annual Conference graph that can be printed off, of the International Society and over time will show changes Even if individuals are currently for Bipolar Disorders with our and/or patterns in mood that very well, we would like them colleagues from the University may be helpful. to consider joining True Colours of Oxford (see page 8). We will as information about even update you more on our findings It is hoped the system will help minor fluctuations in mood is in our next newsletter. us learn more about how mood extremely important for our symptoms change over time in individuals with mood disorders and how they are affected by changes in routines such as sleep.

Within True Colours there is also the opportunity to create up to 10 weekly and 10 daily personalised questions. These allow you to monitor things that are important for you, such as key mood symptoms, Dr Kate Saunders (left) from University of Oxford with Dr Katherine early warning signs or mood- Gordon-Smith and Dr Liz Forty at the International Society for Bipolar monitoring techniques e.g. ‘Last Disorders Conference

4 We have received some great feedback from our current True

Colours participants. Here is what a few of them had to say about

the system...

“ I like being able to see the graphs and I find it so helpful to look back over six “ or twelve months and see the mood the patterns, and the contrasts with “ swings so clearly and it’s very helpful “ both feeling well, and unwell and for my CPN too depressed

True Colours is quick, simple and The True Colours system is brilliant. I “ answer the questions weekly, without allows me to spot triggers. It takes “ “ me less than 5 minutes to do the “fail, and find it useful to be thinking about the questions, how my replies weekly questionnaire and this is vary with my mood, and realising how about right much better I feel sometimes

I’m not bipolar but can recognise I participated because I had considered even the smallest of differences in my

other mood monitoring tools and this responses week to week which gives me

“ insight into my progress. Sometimes in

“ one looked the easiest to use and takes “ into account a wide variety of possible the past I haven’t recognised the signs triggers without giving me loads of before becoming depressed. Asking “ advice about what I should or myself these questions each week are a shouldn’t do great way of monitoring this

If you would like to join True Colours, or would like more information on taking part you can either email, telephone or write to us - our contact details are on the back of the newsletter.

We would be delighted to hear from you.

www.bdrn.org Changes to our team

We have said goodbye to a long- standing team member this year, whilst also welcoming several new colleagues to the team.

Andrew Bethell has worked with the research team in Cardiff University for the past 5 years. Andy joined BDRN as a NISCHR (National Institute for Social Care and Health Research) Clinical Studies Officer.

Andy spent a lot of his time Andy (left) worked with the research team in Cardiff for five years, interviewing participants for joining BDRN as a Clinical Studies Officer. BDRN and promoting the research amongst clinicians, service users, patients and care-givers; as well as the wider general public, so 2. Can you tell us about disorder can impact people’s lives. many of you will have crossed your role working with paths with Andy over the past few BDRN? I feel privileged that people have years. openly shared with me their “I worked with both the NCMH stories.” He will be very much missed, and BDRN research teams, and however has a fantastic career was responsible for interviewing 4. How has your time with ahead and I am sure you will join research participants, as well as BDRN prepared you for us in wishing him well. managing participant recruitment your clinical training? across Wales. Just before he set off to the “Working with BDRN has helped University of Liverpool to embark Over the past few years I worked in a whole host of ways! I feel that on his training to qualify as a closely with NHS Research and I now understand more about the clinical psychologist, Sarah Knott Development departments complexities of mental health asked him a few questions about to raise the profile of mental problems and the challenges that his time with BDRN and his health research in Wales, and to people face when trying to access exciting career ahead… encourage clinical teams to engage support. I have certainly learned with research more routinely. lots about the research process, 1. How long have you and our BDRN scientific meetings worked with BDRN? I was also involved in the training, have helped me to think a lot more supervision and mentoring of new critically. “I joined Cardiff University in 2011, researchers.” working alongside Professor Nick These experiences will be really Craddock, Professor Ian Jones and 3. What have you enjoyed useful to reflect on when I am Dr Liz Forty as part of the National most? completing assignments and Centre for Mental Health (NCMH) designing my dissertation project. research team. “I’ve thoroughly enjoyed being a part of the BDRN research team! I Overall, I am really grateful to have I ‘left’ the University in 2012 to have particularly enjoyed spending worked alongside such a fantastic take up a role with Health and time with people that have team, and I hope to maintain Care Research Wales, and started taken part in our research, and my links with the BDRN teams working more closely with the learning first-hand about how the throughout my clinical training BDRN team in Cardiff.” symptoms associated with bipolar and in my future career.” 6 While bidding Andy a fond Lizzie Ludlow A graduate of Swansea Institute, farewell, the BDRN team are also Cardiff University, and King’s happy to welcome the following College London, Rebecca has new members been fortunate enough to live and work in some fascinating places, Holly Pearce including China University of Geosciences Beijing, the Foreign & Commonwealth Office, and the British Councils in Sri Lanka and Hong Kong.

When not at work, Rebecca can be found reading and wondering, Lizzie is based in Worcester world wandering, and learning to play the ukulele.

Holly joined the team in 2015 Lizzie joined the Mood Disorders Research Group as a Senior Holly is an Assistant Research Administrator in April 2016. Psychologist at Cardiff University, working for the BDRN. This is Lizzie’s first role as part Holly has always had an interest in of a research group. She has mental health. She graduated with had 5 years’ experience in a BSc (Hons) in Psychology from administration at the University Swansea University in 2012. of Worcester in a number of different roles. Lizzie provides Holly worked as an Honorary administrative support to Lisa, Assistant Psychologist within a Katherine, Amy and Sarah who Rebecca joins from Swansea University number of community mental are based at the University of health teams, delivering CBT Worcester, and is the first point of based interventions as well as contact for the group. gaining experience in a number of Keep in touch areas of mental health. In her spare time, Lizzie enjoys cooking, socialising and caring for We plan to have more contact She also worked as a Research her dog and cat, Tilly and Puss. with our participants via email, Assistant with the Cardiff Child although this will not replace our Development Study based Rebecca Lynch annual postal newsletter. at Cardiff University and as a personal assistant for a young Rebecca joined the team from You may have provided your person with Autism Spectrum Swansea University’s Medical email address when you were Disorder. School, where she conducted first in contact with us. follow-up visits with parents and In 2015, Holly joined the BDRN infants in the ‘Growing Up in If you have changed your team. More recently, alongside Wales: Environments for Healthy email address or think you her colleague Katie Lewis, she has Living’ study, and carried out the might not have provided one been exploring how disruptions first phase of a study exploring at the time, please update us to sleep might impact individuals the acceptability and efficacy of with your details by emailing with bipolar disorder. mindfulness training for children, [email protected] delivering a tailored curriculum of Outside of work, Holly has a keen mindfulness sessions to primary If you would prefer us not to interest in music, playing the school children in February 2016. contact you by email, please let piano and attending gigs. She’s us know. also an avid fan of the Welsh Now based at Cardiff University, rugby team and regional team the she coordinates the Bipolar Have you moved? Please let us Ospreys. Education Programme Cymru know your new address - our and measures the impact of contact details are on the back psychoeducation programmes. page of the newsletter. www.bdrn.org BDRN team attend Annual Conference of the International Society for Bipolar Disorders

In July 2016 members of the BDRN team attended the 18th Annual Conference of the International Society for Bipolar Disorders, held jointly with the 8th Biennial Congress of the International Society of Affective Disorders in Amsterdam.

Imogen Webb and Amy Perry (inset), Tomos Jones (below), The conference provided the present their work during the conference. opportunity for both clinicians and researchers from across the We are very proud that BDRN world to present and discuss the members made up 15% of the latest leading research findings UK delegates and gave a total and treatment approaches in the of six talks and eight poster field of mood disorders. presentations.

Symposium topics included Two medical students who pregnancy and childbirth previously undertook their (chaired by Professor Ian Jones), research projects with us, co-morbidities in bipolar Imogen Webb and Tomos Jones, disorder and the use of e-mental also attended the conference to health technologies. present their work. BDRN at Hay Festival Professor Lisa Jones and Professor Lisa Jones said all. We ended our presentation Professor Ian Jones were “Speaking at the Hay Festival with a big public thank you to all delighted to talk about bipolar was a wonderful opportunity to of our BDRN participants from all disorder and the work of BDRN be able to speak to the public over the UK”. at the Hay Festival in June of this about mood disorders. The year. audience was very keen to know BDRN would like to thank the more judging by the number of University of Worcester for We are very grateful to Clare questions – if only there had sponsoring their Hay Festival Dolman, Vice Chair of Bipolar UK, been more time to answer them presentation. who joined them on stage to talk about her own experiences of bipolar disorder.

They presented to a big crowd of around 300 people – even though they were on at 10am!

The Hay Festival is one of the world’s foremost annual literary festivals, taking place every spring in the market town of Hay- on-Wye. 8 Announcements

Prestigious Fellowship for Green, Vice Chancellor and Chief and Professor Nick Craddock) Professor Ian Jones Executive; Dr Jan Quallington, when she delivered her Head of the Institute of Health Inaugural Professorial Lecture at We are delighted that the and Society; and Professor the University of Worcester in University of Worcester recently Eleanor Bradley) and BDRN June 2016. presented Professor Ian Jones colleagues (Professor Ian Jones with a prestigious University Fellowship, and appointed him as Honorary Professor of Psychiatry.

This is recognition of Ian’s outstanding achievements as a psychiatrist and mood disorders researcher, and strengthens the close relationship between our teams in Cardiff and Worcester.

Inaugural Professorial Lecture by Professor Lisa Jones

Professor Lisa Jones with University of Worcester Professor Lisa Jones (centre) Professor Ian Jones (centre) colleagues (Professor David Bipolar Disorder Resources

Useful Books Useful Websites

Bipolar Disorder: The Essential Guide by D Bipolar Disorder Research Network: bdrn.org Roberts (2011), published by Need - 2 - Know Bipolar and Genetics Your Guide: bipinfo.org Family Experiences of Bipolar Disorder by C Aiken (2010), published by Jessica Kingsley Publishers Bipolar Education Programme Cymru: ncmh.info/ Living with Bipolar Disorder by N Burton (2009), bepcymru published by Sheldon Press Action on Postpartum Psychosis: app-network.org The A-Z Guide to Good Mental Health: You Don’t Have to Be Famous to Have Manic Depression by Bipolar UK: bipolaruk.org.uk J Thomas and T Hughes (2008), published by Oneworld Publications Youthspace.me: youthspace.me Bipolar Disorder - The Ultimate Guide by S Owen Mental Health Foundation: mentalhealth.org.uk and A Saunders (2006), published by Michael Joseph Ltd Mind: mind.org.uk Become your own Bipolar Life Coach by Wendy Lavin (2012), published by Grosvenor House MQ: mqmentalhealth.org Publishing Ltd Rethink: rethink.org

National Centre for Mental Health: ncmh.info www.bdrn.org Pregnancy and bipolar disorder - volunteers needed

Amy Perry, one of our BDRN bipolar disorder remaining well researchers, has been or becoming unwell following interviewing women with bipolar childbirth including medication disorder during pregnancy and use, pregnancy or delivery again once they have given birth. complications, past history of illness following childbirth and Following women through the presence of mood illness pregnancy will help us to find during pregnancy. out more about factors which Amy is analysing the data during her PhD make women more or less likely We will update you on more to become unwell in relation to on Amy’s findings in our next one will be organised in the childbirth. These findings will newsletter. near future. If you would like be very useful for women with to be added to a mailing list for bipolar disorder who may be This work is ongoing and we further information about future considering pregnancy. would be delighted to hear from workshops please contact Amy. any women with bipolar disorder So far, just over 100 women have who are currently pregnant and We are also very interested in already taken part in this study, may be willing to help us with this finding out from individuals more which is one of the largest of its research, please contact Amy on widely (both men and women) kind anywhere in the world! Amy 01905 54 2880 or by emailing about any mood illness episodes would like to say a huge thank [email protected]. they might have experienced you to those of you who have around the time of the birth/ kindly participated, as without In June this year Amy ran a arrival of their children. We have you this important work would not workshop for 17 women with included some questions in the be possible. bipolar disorder and their enclosed questionnaires pack partners who were considering asking about your experiences Amy is about to start analysing pregnancy. Organised jointly around the birth/arrival of your the data collected so far as part with Clare Dolman from the children. of her PhD and will be looking charity Bipolar UK, the workshop at a range of factors that may was oversubscribed and a huge We would be extremely grateful contribute to women with success. It is hoped that another for your responses. BDRN in Japan Researchers in Japan have now joined the BDRN team. BDRN Japan, led by Dr Tadufumi Kato at the RIKEN Brain Science Institute in Wako, is modeled on our work in the UK. Over 100 people in Japan who have bipolar disorder have already joined the network. Great to see BDRN going global!

10 Advising on EastEnders storyline

The depiction of postpartum end the postcode lottery where psychosis in EastEnders has some areas have access to good massively raised the profile of services in a Mother and Baby this devastating condition among Unit (MBU) while others miss the general public. out, and the media attention encouraged by the EastEnders Last year Prof. Ian Jones and I storyline has definitely helped: visited the Elstree Studios to even the Minister for Mental meet with the programme’s Health, Alistair Burt, referred to writers and researchers to it in his speech to the House of encourage them to portray the Clare Dolman, Vice Commons promising to dedicate character Stacey Branning, who Chair of Bipolar UK significant funds to tackling this has bipolar disorder and was problem: pregnant, suffering a postpartum definitely raised awareness of the psychosis, as this does happen to issue via charities Bipolar UK and “It’s great that EastEnders is raising 20-25% of women with bipolar. Action on Postpartum Psychosis awareness of this very important (APP), with the ‘Bipolar and issue and it makes for some We were also very keen that Pregnancy’ booklet we produced harrowing scenes to watch. Having the portrayal was as accurate as together being downloaded a baby is a major life event and we possible, so gave our input to the a massive 855 during the want all new and expectant mums scripts as they were developed EastEnders storyline (compared to be able to get the mental health over the following months. to 60 times in the three months support they need. That’s why before). we are spending an extra £350 We were both very pleased with million on perinatal mental health the result: actress Lacey Turner’s Also, by shining the spotlight services over the next five years.” brilliant portrayal of Stacey’s on the need for better care for anguish as she suffers delusions women suffering in this way, it This storyline has now been and hallucinations soon after has given a boost to the Maternal nominated for another award at her baby’s birth has deservedly Mental Health Alliance which Ian the Mind Media Awards. received lots of praise, winning and I are both very involved with. her two TV Soap Awards. It has We have been campaigning to By Clare Dolman

Clare Dolman and Professor Ian Jones visiting East London’s most famous square www.bdrn.org Would your family be interested in Acknowledgments taking part in a study into the children of people who have a mood disorder? We would like to thank Mr & Mrs Knowles for their donation in memory of their son and the age of 18 years to complete David, Robin and Simon a short questionnaire about the Andrews for their donation on strengths and difficulties of the behalf of their late father, Dr child, and asking adult children Brian Andrews. of parents who have bipolar disorder to complete some We are very grateful for your questionnaires about their own generosity. health and experiences.

Dr Argyris Stringaris At the moment we would simply like to find out if this is Cardiff University BDRN is working with Dr Argyris something that may be of interest Stringaris from the Institute of to our participants. Psychiatry Service Psychiatry in London and the National Institutes of Health in We would be very grateful if The Cardiff University the USA. you would let us know if this is Psychiatry Service (CUPS) something your family might be offers a second opinion or Dr Stringaris is interested in the interested in helping us with in consultation to patients children, both youngsters and the future by writing a note in the with complicated mental adults, of BDRN participants. comments box at the end of your health problems, with the questionnaire pack, or email us aim of assisting and advising The research would likely involve at [email protected] or both clinicians and their asking parents of children under telephone us on 01905 542 880. patients in the diagnosis and management of severe mental illness.

There is no charge for this service (either to the patient or the referring NHS Trust). More information can be found at: cardiff.ac.uk/mrc-centre- neuropsychiatric-genetics- genomics/clinical-services or by e-mailing Elizabeth Upadhyay at UpadhyayEA@ Cardiff.ac.uk. The BDRN team

Contact Us

Worcester Cardiff Mood Disorders Research Group Mood Disorders Research Team University of Worcester Cardiff University Henwick Grove Hadyn Ellis Building Worcester Maindy Road WR2 6AJ Cardiff Scan with your Smartphone CF24 4HQ to go straight to the BDRN website 01905 542 880 029 2068 8395 [email protected] [email protected] www.bdrn.org