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BDRN Bipolar Disorder Mood Disorders Research Annual Newsletter 2014/15 Research Network Welcome to the 2014/15 edition of the annual Mood Disorders Research Newsletter. Thank you very much to everyone who has helped with our research over the years. As always, we are particularly grateful to those who kindly gave up their time and effort to participate in our studies - without your help the research quite simply would not happen! You will notice that we have not included any questionnaires with this year’s newsletter, instead in response to numerous requests we are offering the self mood monitoring system True Colours to all participants who have previously taken part in our research. We have included a leaflet about this new innovative system with the newsletter and further details can also be found on page 2. The Mood Disorders Research Team Cardiff University Professor Nick Craddock, Professor Ian Jones, Dr Liz Forty, Christine Fraser, Katie Lewis Heather Jones, Andrew Bethell, Arianna Di Florio, Sarah Knott University of Birmingham Dr Lisa Jones, Dr Katherine Gordon-Smith, Amy Perry www.bdrn.org This year we are also particularly interested in hearing from women with bipolar disorder who are currently pregnant. They can help us find out more about the factors that make some women with bipolar disorder more or less likely to experience episodes of illness in relation to childbirth. There is further information about this research on page 5. We hope you enjoy the newsletter. True Colours is a system that monitors mood symptoms using email. It is hoped that True Colours can help researchers learn more about how mood symptoms change over time and are affected by factors such as changes in routines, sleep, alcohol use and medications. The system has been designed by our colleagues at the University of Oxford and we are asking all participants who have bipolar disorder and unipolar depression and have previously taken part in our BDRN research if they would be willing to join True Colours. True Colours is an easy-to-use technology that enables you to monitor your mood in an active and ongoing way. True Colours can send emails or texts to ask about your mood. The system can send ‘prompts’, by email asking you to answer simple questions about your mood. Your answers are converted into a graph which, over time, shows changes and patterns which can be helpful for you to see. We have included a leaflet about True Colours with this newsletter. If you would like to join True Colours, or would like more information on taking part you can either: The BDRN and Oxford True Colours Teams n Email, telephone or write to us - our contact details are on the back of this newsletter. n Fill in the form on the leaflet and return it to us in a sealed envelope to the FREEPOST address on the back of the leaflet. We would be delighted to hear from you, and look forward to sending you further details of this exciting and innovative new system. 2 An example of a graph produced by True Colours Mood Disorders Research Team Update Our research group has become increasingly involved in a very large international study investigating genetic factors that may be involved in causing susceptibility to bipolar disorder. We are working particularly closely with colleagues in Boston and New York; and have also been working more widely with international researchers who are studying other important psychiatric illnesses, including schizophrenia, unipolar depression, autism and attention deficit hyperactivity disorder (ADHD). An important paper that got a lot of publicity was published in Spring last year in the journal ‘The Lancet’ (see below). It showed that there are some genes that can influence susceptibility to more than one illness. That tells us that some of the same chemical changes may play a role in different psychiatric disorders. This highlights that we should never talk about ‘the gene for bipolar disorder’ or ‘the gene for depression’. There are many genes that can influence risk, just as there are many non-genetic factors that influence risk. This emphasizes the complexity of mental illness, but also provides strong scientific leads towards both of our volunteers and supporters. So, a big thank you to all. I am also delighted to announce that my long-time colleagues and friends, Professor Ian Jones in Cardiff and Dr Lisa Jones in Birmingham will be taking over the leadership of the Bipolar Disorder Research Network. Professor Nick Craddock improved diagnosis and better treatments. During the last year we have been working on joint analyses that include volunteers from the east and west coasts of the United States, as well as Sweden and our own BDRN volunteers from the UK. I am enormously grateful to everyone who has given their time and support to BDRN over the years and I very much hope that you will continue to do so in the future. Publications will appear during 2014 and we will be able to give details and web addresses in the next newsletter—so watch this space! In addition we have been busy with lots of other important analyses that address all sorts of aspects of bipolar and related mood disorders; and you will see these mentioned in the pages of this newsletter. Professor Ian Jones As always, this important work is impossible without the willing help An important paper on genetic risk was published in The Lancet in February 2013 www.bdrn.org This is a planned development that will allow Ian and Lisa to continue driving forward the research whilst allowing me to devote more time to other areas outside research. Of course, I will continue to be involved as an advisor and consultant; and very much look forward to the exciting developments ahead. Dr Lisa Jones Changes to our team We said goodbye to some team members at the end of last year. In Birmingham, Amy Green is now training to become a teacher and Amie Shoebotham has moved to a new research job at Warwick University. In Cardiff, Nia Holford (neé Fowler) gained a place on the Clinical Psychology Doctorate course at Cardiff University. She hopes to maintain links with BDRN, and to explore her research interests in perinatal psychosis as part of her clinical doctorate. We thank them all for their invaluable contribution to BDRN and we wish them well in their future careers. We also wish good luck to Arianna Di Florio who is taking up a post at the University of North Carolina. Katie Lewis is a PhD student funded by the Medical Research Council (MRC), who began her project with the BDRN team in October 2013. Katie and one of the special ‘Actiwatches’. Her research examines the relationship between bipolar disorder and sleep loss and how sleep loss experienced before and after childbirth can affect women with bipolar disorder. Katie will be using a variety of methods to measure sleep loss such as questionnaires and sleep diaries. She will also be using special activity watches that detect when someone is sleeping via built-in sensors. She will also investigate the role of genetic factors that make some people more or less vulnerable to the effects of sleep loss. We will be sending out further information about Katie’s research in the New Year. Keeping you in touch with our research Over the coming years we are planning to have more contact with past participants via email. Many of you will have provided your email address when you were first in contact with us. If you have changed your email address or think you may not have provided one at that time, please do update us with your details by emailing [email protected] Alternatively, if you would prefer us not to contact you by email, please let us know. 4 We’d like to keep in touch by email. Pregnancy and bipolar disorder volunteers needed It is known that pregnancy and the postpartum (postnatal) period are times of increased risk of an episode of illness for women with bipolar disorder. For many years our research group has had a particular interest in finding out more about the factors that make some women with bipolar disorder more or less likely to experience episodes of illness in relation to childbirth. We are very grateful to those of you who have already helped us with this area of research. Amy Perry, one of our BDRN research assistants, who is studying for a PhD, is currently interviewing women with bipolar disorder who are pregnant to help us take this research forward. If you have bipolar disorder and are currently pregnant, or if you become Pregnancy can be a high risk time for women with Bipolar disorder. pregnant in the future, Amy would be delighted to hear from you. For those of you who have already participated in our BDRN research, Amy will ask you to complete some questionnaires during your pregnancy, and will then speak to you by phone 3 months after your baby is born. We hope this study will lead to better prediction and treatments for postpartum episodes. If you would like further information or would like to take part, contact Amy Perry on 0121 301 2361 or email [email protected] Professor Ian Jones is an expert on bipolar and pregnancy: “For women with bipolar disorder childbirth can be a high risk time - women are 23 times more likely to be admitted to psychiatric hospital with bipolar disorder in the month following delivery than at any other time in their life. We do have some clues – we know that genetic factors are important, the big hormonal changes that occur after having a baby may be involved, and sleep disruption may also play an important role in some women.” Professor Ian Jones “We really need more research to help us understand what leads to these episodes, to improve treatments and to help reduce the risk to women.” Clare Dolman is a BDRN Research Champion and Bipolar UK Chair of Trustees. Clare actively supports research into postpartum episodes of bipolar disorder herself being hospitalised following the birth of her first child: “Within days of being at home, after two sleepless nights at hospital, I started accelerating into mania but very different to episodes I had experienced before.” Clare remained well following the birth of her second child. “This time I started taking lithium as soon as I had delivered my son. I also went home within a few hours of delivery and had family to help look after the baby. This meant I could relax and get a proper amount of sleep.” www.bdrn.org Clare Dolman Medications and mood Thank you again to everyone who filled in the questionnaires that we sent out with our last newsletter. We had a fantastic response with over 2500 of you completing them. One of the questionnaires asked individuals if they had ever noticed if any drugs had affected their mood. A fourth year medical student at the University of Birmingham, Steve Crockett, took a year out of his medical degree to take an intercalated BMedSc in Psychological Medicine and analysed the questionnaire responses for his research project. Steve looked for patterns in the questionnaire responses (lots of people reporting the same drugs having the same effect on their mood). Researchers found that some drugs may affect mood. The most common groups of drugs that people reported had an effect on their mood were i) antihistamines, ii) cardiovascular drugs, iii) contraceptives and hormonal replacement therapy (HRT), iv) painkillers, and v) statins. Looking at how these drugs work in the body may give us clues to new biological pathways involved in mood disorders. We are currently working on taking the findings forward. Migraine, epilepsy and bipolar disorder It is known that some people with bipolar disorder can also experience migraine, epilepsy and seizures; or both, but the reason for this is not known. Sarah Knott began her PhD study in October 2012 with the aim of investigating the relationship between bipolar disorder, migraine and epilepsy. Sarah is assessing the prevalence of migraine and epilepsy in individuals with bipolar disorder, as well as looking at the impact of these disorders on the course of bipolar illness. This research has the potential to increase our understanding of the 6 relationship between these disorders and so will have implications for both research and clinical practice. Sarah’s work has involved using some of the data collected through the BDRN interview and questionnaire packs. Sarah is currently collecting further data through telephone interviews and would like to say a big thank you to all those who have contributed to the study, for making this research possible. We will keep you updated with the progress of Sarah’s PhD study in future newsletters, and will share our findings once all the data have been collected. Sarah is researching links between migraine, epilepsy and bipolar disorder Gambling and mood disorders A number of participants may remember completing a questionnaire a couple of years ago asking about gambling habits and behaviours. Alice Metcalf a medical student at the University of Birmingham completed her research project on the questionnaire responses for her intercalated BMedSc in Psychological Medicine. We are very proud of Alice, who obtained a first class mark for her project and graduated with a first class degree. This was the largest ever UK study looking at the gambling behaviours of individuals with mood disorders. Alice found moderate/severe risk of problem gambling was around four times higher in those with bipolar disorder than in the general population, and was non-significantly increased in those with unipolar depression. A number of participants had experienced problems with online gambling In bipolar disorder, being at risk of moderate/severe problem gambling may be associated with suicidal behaviour and a rapid cycling illness course. disorder. This paper has recently been accepted for publication in the British Journal of Psychiatry. Thank you to everyone who took the time to complete this questionnaire. These findings suggest clinicians should consider assessing gambling problems in individuals with bipolar Bipolar Disorder Resources Useful Books Useful Websites Bipolar Disorder: The Essential Guide by D Roberts (2011), published by Need - 2 - Know Bipolar Disorder Research Network: bdrn.org Family Experiences of Bipolar Disorder by C Aiken (2010), published by Jessica Kingsley Publishers Living with Bipolar Disorder by N Burton (2009), published by Sheldon Press The A-Z Guide to Good Mental Health: You Don’t Have to Be Famous to Have Manic Depression by J Thomas and T Hughes (2008), published by Oneworld Publications Bipolar Disorder - The Ultimate Guide by S Owen and A Saunders (2006), published by Michael Joseph Ltd Become your own Bipolar Life Coach by Wendy Lavin (2012), published by Grosvenor House Publishing Ltd www.bdrn.org Bipolar and Genetics Your Guide: bipinfo.org Bipolar Education Programme Cymru: bep-c.org Action on Postpartum Psychosis: app-network.org Bipolar UK: bipolaruk.org.uk Youthspace.me: youthspace.me Depression Alliance: depressionalliance.org Mind: mind.org.uk Rethink: rethink.org National Centre for Mental Health: ncmh.info Bipolar programme wins innovation award Many participants in BDRN who live in Wales have taken part in the Bipolar Education Programme Cymru (BEPC). BEPC is a psychoeducation course designed to teach people with bipolar disorder more about their condition and equip them with the tools they need to help manage their illness. In May 2014 the BEPC programme won a prestigious innovation prize at the British Medical Journal (BMJ) awards, held at a ceremony in London. The awards recognise and celebrate inspirational work done by medical professionals and their teams across the UK; and were judged by a panel including senior representatives from the Royal Colleges as well as leading UK clinicians and academics. The BEPCymru team celebrates after receiving the award More than 3500 people have benefited from taking part in BEPC and its online counterpart, Beating Bipolar, since its launch five years ago, with courses taking place all over Wales. Professor Ian Jones said: “Everyone involved with BEPC has worked tirelessly to develop this programme, and we intend to keep improving it so that more people with bipolar disorder can benefit from it and hopefully enjoy a better quality of life.” Find out more about BEPCymru at www.ncmh.info/bepcymru. New DNA findings for Unipolar depression In the past year we have contributed to a number of published papers that have used data from the Depression Case Control (DeCC) and Depression Network (DeNT) family studies. One of these studies found that variations in DNA (called copy number variants) were associated with recurrent depression. These findings are an important step toward identifying the biological underpinnings of the disorder. A number of individuals receiving this newsletter will have taken part in these studies. 8 The paper on the genetics of unipolar depression was published in Molecular Psyciatry last year National Centre for Mental Health Update Over 3500 people have now come forward to help the National Centre for Mental Health with its research. mental illness and develop better treatments for these conditions. Together we can really make a difference”. Volunteers of all ages from across Wales are helping the Centre to learn more about the causes of mental ill health. A better understanding of mental health disorders will help to improve diagnosis, treatment and support in the future. The Centre is still looking for around 2500 more volunteers. We are interested in all mental health disorders, including bipolar disorder, depression, ADHD, PTSD, Alzheimer’s disease and dementia, schizophrenia and autistic spectrum disorders. NCMH Director, Professor Ian Jones said: “Its great that so many people have taken part and we are extremely grateful to them all. With this help we can continue to advance our understanding of If you live in Wales and haven’t already taken part in the Centre’s research, you can volunteer at www.ncmh.info, emailing [email protected], or calling 029 2068 8401. An NCMH research interview Mental health and medication guide available now Medication is one form of treatment that can help relieve some of the symptoms of mental illness. NCMH provides access to a website called Mental Health & Medication Wales which is openly accessible to everyone via the NCMH website www.ncmh.info. The website provides useful and easy to understand information about mental health conditions and the different medications used to help treat these conditions. For example, there is particular information about the medications that are used to treat bipolar disorder and depression. It gives answers to commonly asked questions about conditions and medications, and access to Printable Patient Information Leaflets. The independent and quality assured content is written by specialist mental health pharmacists and based on best available evidence. New resources available on www.ncmh.info Our new Bipolar Disorder leaflet features information on symptoms, causes and treatments for the condition. It also contains practical tips for people with bipolar and also for their families, partners and carers. Download the leaflet in English or Welsh at www.ncmh.info/bipolar-disorder-leaflet. A new video section is also available from the ‘Resources’ menu, along with the Working with Bipolar module mentioned in our last newsletter, which can be found under ‘Online Tools’. www.bdrn.org Bipolar disorder documentary screened Last Chance Saloon is a series of films made by film maker Barry Gibb on behalf of the Wellcome Trust. The films follow photographer and musician Neil “Twink” Tinning as he embarks on a year-long journey to understand mental illness while recording an album and performing live for the first time with his own band. Along the way Twink discusses a whole range of mental health issues with leading experts including Professor Ian Jones and Professor Nick Craddock. The films were shown at a special screening event in Cardiff earlier this year, and have received nominations and awards at a number of international film festivals as far afield as Toronto and Melbourne. Last Chance Saloon star Neil “Twink” Tinning Professor Jones said “These films provide a real insight into what it is like to live with bipolar disorder, and just how important mental health research is.” If you would like to view the films, they are available on the Wellcome Trust’s Mosaic website, which can be found here: www.mosaicscience.com/stories. Beating Bipolar - a free online resource Launched in January 2011, Beating Bipolar is the first web-based education treatment for bipolar disorder. The intervention covers key areas such as: n n n diagnosis and causes of bipolar disorder role of medication relapse prevention and early intervention 10 n n n n psychological approaches to treatment the role of lifestyle in treatment of bipolar disorder advice for family and carers bipolar disorder and women. The delivery of the intervention is entirely web-based in the form of 8 modules consisting of video material including a number of interactive exercises in which users are invited to feed back information about their condition and use a forum, which is moderated by a member of the BEP-C team. We are delighted to be able to offer free access to Beating Bipolar to everyone with a diagnosis of bipolar disorder and to mental health professionals in the UK. Visit the Beating Bipolar website to register: www.beatingbipolar.org. Professor Nick Craddock awarded an honorary Doctor of Medicine Degree the Department of Psychiatry. It was at this time that Nick led the establishment of BDRN. On 15th July this year, Professor Nick Craddock was awarded an honorary Doctor of Medicine degree from the University of Birmingham. Gaining an honorary degree is extremely prestigious; this is the way that universities honour individuals who are particularly eminent in their field and whose work is of exceptional national and international significance. In 2002, Nick moved back to Cardiff where he has stayed. The links between the Universities of Cardiff and Birmingham remain extremely strong via BDRN. Nick’s award was in honour of his exceptional contribution to research on bipolar disorder. This gave all of us in BDRN the opportunity to reflect back over Nick’s life and career: Nick was born and bred in Sutton Coldfield, just north of Birmingham. As a child he wanted to be a physicist, and he progressed to Cambridge University where he read Natural Sciences, concentrating on theoretical physics. However, during his degree he began to think about studying medicine as he wanted to do something which involved people and that would make a tangible contribution both to individuals and society. After his graduation from Cambridge with a first in Natural Sciences in 1980, he went on to study Medicine at the University of Birmingham. He then started his medical career in neurology. He soon found that the most interesting people he came across in his work were those with neuropsychiatric or psychological www.bdrn.org Professor Craddock with his honorary degree problems, and he eventually decided to specialise in psychiatry. Nick trained as a psychiatrist in the West Midlands. During his training he attended a lecture on the genetics of mental illness, which opened his eyes to the possibilities of psychiatric genetics which he felt offered the best chance of being able to make a significant difference in mental illness. He then embarked on research into psychiatric genetics, focused on bipolar disorder. He moved to Cardiff University to complete his PhD, and spent one year at Washington University in St Louis, Missouri, USA. In 1997 Nick moved back to Birmingham as Professor of Molecular Psychiatry and Consultant Psychiatrist, and only three years later became head of In addition to being a world leader in psychiatric genetics Nick has done much to reduce the stigma associated with bipolar disorder, through the programme he made with Stephen Fry “The Secret Life of the Manic Depressive” and by being the advisor to BBC EastEnders on its storyline about a character with bipolar disorder. He is Scientific Advisor to Bipolar UK and Action on Post-partum Psychosis. He is the Treasurer of the Royal College of Psychiatrists and was until recently the Chair of its Academic Faculty. He has published over 370 academic papers. He has been President of the International Society of Psychiatric Genetics and this year he was made an Honorary Professor of Psychiatry at the University of Oxford. Outside of work, Nick and his wife, Bridget (who is also a psychiatrist), have a small farm on the Vale of Glamorgan where they keep lots of animals, including pigs, alpacas, cows, geese, and sheep, and make cider from the apples they grow in their orchard. Well done Nick, from everyone in BDRN. Help Partners2 improve Primary Care for people with bipolar and schizophrenia Partners2 is a five-year research programme, based at universities and study sites in Birmingham, Lancashire and Devon. It aims to develop a better model of primary care services for people diagnosed with bipolar and schizophrenia. The PARTNERS2 research programme complements the work of BDRN by seeking to develop better services. It includes many opportunities for people with experience of bipolar (as service users or as carers) to influence how the research is done, making sure it meets their needs and aspirations. Advisory Panels of people with Lived Experience of bipolar (LEAPs) have been set up (www.mcpin.org/ourwork/current-research) at each of the three study sites to work collaboratively with researchers across the workstreams and stages of the programme. Service user researchers will work alongside the academics in each site. Focus groups have been held to explore what people with lived experience of living with bipolar or schizophrenia (as service users or as carers) would like their mental health support to help them to achieve. This information will help researchers to measure and compare Acknowledgments We would like to thank Mr & Mrs Knowles for their donations to the Mood Disorders Research Team in memory of their son. Thank you also to Dr Susannah Vyvoda for her very kind donation. how effective different types of care are in helping people with bipolar to reach their goals, and to lead healthier, more satisfying lives. Cardiff University Psychiatry Service In early 2015 PARTNERS2 researchers will be inviting people using services in the three study sites to take part in focus groups to discuss their current care, their experiences of moving between primary and secondary care, and what being discharged to primary care means to them. The Cardiff University Psychiatry Service (CUPS) offers a second opinion or consultation to patients with complicated mental health problems, with the aim of assisting and advising both clinicians and their patients in the diagnosis and management of severe mental illness. If you are interested in joining one of the LEAPs or focus groups, please contact Ruth Sayers [email protected] (PARTNERS2 PIiR Coordinator) at McPin Foundation. Travel expenses and payments or vouchers can be claimed. Requests for a second opinion must be made by the doctor in charge of the care of an individual’s mental health – it is not possible to accept selfreferrals. To find out more about what PARTNERS2 is planning to find out, please visit the website: www.bit.do/partners2 We hope to share more information here as the study progresses. There is no charge for this service (either to the patient or the referring NHS Trust). More information can be found at: www.tinyurl.com/cups2nd or by e-mailing Elizabeth Upadhyay at [email protected]. Contact Us Birmingham Mood Disorders Research Team Department of Psychiatry University of Birmingham National Centre for Mental Health 25 Vincent Drive Birmingham, B15 2FG Cardiff Mood Disorders Research Team Cardiff University Hadyn Ellis Building Maindy Road Cardiff CF24 4HQ Scan with your Smartphone to go straight to the BDRN website 0121 3012361 [email protected] 029 2068 8395 [email protected] www.bdrn.org