Bipolar UK Event Report BIPOLAR UK CONFERENCE REPORT Brian Hicks reports on this event, held at Bush House, London, on 17th November 2019 by Bipolar UK in partnership with King’s College London. Brian is bipolar and is a journalist and market researcher. The presentations are also available at www.bipolaruk.org. Some 300 delegates attended the Bipolar UK conference, over half of whom are bipolar. The last conference of its kind was held in 2015. The conference started with a welcome from Guy Paisner, chair of Bipolar UK, who has a finance and fundraising background. He said that an estimated 1.3 million people in the UK suffered with bipolar and Bipolar UK has the aim of helping these to live well. He said it is a small charity but with a big impact. In his early 20s, Guy’s life was turned upside down by bipolar. He was lucky to have a supportive family and was helped by lithium. He always feels a bit wobbly at this time of year. Bipolar UK aims to raise awareness of the condition and to support treatment needs. Guy thanked Dr Clare Dolman, who provided the initial funds to get the conference started. Dr Dolman is a journalist and researcher, a former chairman and trustee of Bipolar UK and currently one of its ambassadors. She has had bipolar since her early 20s. There was also sponsorship from the pharmaceutical companies Janssen and Sanofi. BIPOLAR UK, PAST AND FUTURE Simon Kitchen, CEO of Bipolar UK, thanked King’s College for giving a special price for holding the event at Bush House and gave an update on Bipolar UK. He has been about 18 months in post and previously worked for Leonard Cheshire Disability and was for some years the executive lead for the Dementia Action Alliance. Simon’s first exposure to bipolar was through helping a schoolfriend in Newcastle through hospital periods. Simon’s brother-in law also had bipolar and committed suicide. Bipolar UK has had to cut back on services in recent years as income has not been meeting expenditure. It is now financially sustainable and looking forward more confidently to the future. It has pioneered new technology, including Chatbot. Simon commented that the event was probably the biggest bipolar conference ever held in the UK in terms of numbers attending. Bipolar UK has been working closely with Cardiff University, and the NHS to see how those with bipolar can best be helped. Simon said that everyone should take away hope as lots of people can live normal lives with bipolar. His own bipolar friend has now got his own house and is working. It is never too late to live well with the condition. RESEARCH INTO BIPOLAR An update on the latest research into bipolar disorder was given by Professor Allan Young, Chair of Mood Disorders at King’s College London, where he is also Director of the Centre for Affective Disorders. He is also a trustee of Bipolar UK. Two branches of his family, not connected genetically, have been affected by bipolar. As a teenager he remembers a manic cousin visiting from abroad, causing trauma for everyone. In terms of long-term human medical burdens and costs, bipolar is ranked 17th worldwide, whereas back pain is in first position and major depression second. Its real position is probably higher as some with depression may be bipolar and many are diagnosed incorrectly or late. Research in France and the UK suggests that about 5% of bipolar 1 sufferers are only ever manic and not depressed. What is clear is the importance of sleep for bipolar sufferers. Professor Young feels that old patient records were better than new computerised records, which often do not include older information. Some trust records from 15 years ago are just not available anymore. Dr Young recommended The Maudsley Prescribing Guidelines in Psychiatry, 13th edition as a guide to prescribing treatments for bipolar. Lithium research pioneers Lithium is found everywhere in the world and maybe plays a fundamental role in life. John Cade in Australia had the first paper published in 1949 showing lithium to be anti-manic. Mogens Schou, a Dane, subsequently confirmed the efficacy of lithium in many research papers. Professor Young thinks that the two researchers should have shared the Nobel Prize between them, but perhaps did not do so because of the lithium sceptics at the Maudsley Hospital. Better lithium formulation Professor Young said there was no doubt that lithium prevents manic recurrence. It is less effective against acute depression, but very good long term for unipolar depressions. Long-term renal effects remain a concern, but if blood lithium levels are kept at recommended levels of 0.6 - 0.8mmol/l no-one gets severe long-term kidney damage. Professor Young is working with a small pharmaceutical company on a better lithium formulation with less potential damage to kidneys. Lithium research stigma Unfortunately, he said that there is a stigma attached to lithium and it is almost impossible to cannot get R&D funding for studies with it. Apart from a large EU grant, all Allan’s lithium grant applications have been rejected. Lithium is the only drug treatment shown to reduce suicide risk. It has putative effects on dementia and some anti-impulsive effects. However, about a third of patients do not respond to lithium. Professor Young commented that current bipolar treatments are nowhere near the efficacy and selectivity of current cancer treatments. In order to improve the use of lithium, R-LiNK, a Europe wide project which has received funding, has been launched (rlink.eu.com). It has received funding of EUR 7.7 million and the Centre for Affective Disorders is one of the lead participants. The centre’s CriB study has recently finished (www.kcl.ac.uk/ioppn/depts/pm/research/cfad/the-crib-study) and he is currently applying for new grants Lithium levels in the brain A colleague of Dr Young, David Cousins is developing techniques of measuring lithium levels in the brain in about 300 new patients across Europe taking the medicament. This may be an important contributor to lithium’s effect, but it could also be related to genetic makeup and how lithium affects other molecules. A full response to lithium takes a long time. Activity and sleep pattern can be early warning signs for bipolar problems. A Dutch study has shown that lamotrigine combined with lithium is more effective than lithium alone in treating bipolar. Lithium, dementia and cognitive deficits A Texas study found that higher lithium levels in the water supply correlated with lower suicide rates in the populations. This has been replicated in large studies in Austria and Japan. Long-term exposure to lithium increases grey matter, which is generally better for the brain, and also possibly helps with dementia. There are reduced levels of dementia found it lithium takers, but he would not recommend taking it for this. Putting lithium in water supplies would need massive studies and is some way away, but Professor Young thinks these should be progressing. More than one of his colleagues takes low doses of lithium to protect against dementia. Bipolar is associated with widespread cognitive deficits, but these are not as bad as with schizophrenia. Bipolar patients tend to be higher functioning and the bipolar brain is likely to be more plastic than the schizophrenic one. Trials are underway at King’s College to test a new 5-HT7 antagonist for treatment of cognitive impairment, a common side-effect of bipolar. MY SELF-MANAGEMENT TOOLKIT A talk on How I manage my bipolar was given by Jeremy Clark, a Bipolar UK trustee for four years and former Bipolar UK co-facilitator in one of four breakout sessions. Jeremy started aged ten as a carer for his father who had a series of mental health episodes and was eventually admitted to hospital under section. His father is about to have his 80th birthday and is still hard to manage, some 36 years since his first episode. He and his brother pick up warning signs quite early with their father. However, he does not always listen and they then have to contact the local mental health team for help, such as raising his medication level. Own experiences and breakdowns Jeremy has experienced anxiety and depression. He had a psychotic episode at 17, whilst at school. His sleep was out of kilter and he felt he was on a mission to save the world. It was very frightening to go through and he had intense depression afterwards with suicidal ideation. It took ten years for Jeremy to get a diagnosis at the age of 27. He thought stress was the problem, so became a chef on leaving school, something practical and not academic. He then studied for A levels and went to university to study French, but, in his first week there, swapped to Chinese. He spent a lot of time going between China and UK. In 2000, he had a bad episode when back from China and was admitted to the Priory Hospital, thanks to his mother who had medical insurance for him through her work. He commented that the food was better in the private system but that the aftercare can be better in the NHS. Jeremy has experienced some unemployment, due to mania or depressive periods. With mania, it has been his colleagues who have not wanted him to continue, whereas with depression it has been his own decision to stop working. He has also suffered from PTSD. Jeremy has been on all sorts of medication, starting with carbamazepine for mood stability. Nine years ago he was on sodium valproate and risperidone, but he came off the valproate because of hypothyroidism. About 12 years ago he helped to run a care group and for the last five years he has been a policy manager at the Department of Health and Social Care. Toolkit and support Having a toolkit and a supportive partner for Jeremy is very important. Previously five friends helped him and could contact him when worried. Jeremy admits he is lucky that this wife understands the condition. He met her whilst under section. A quiet home is important, and, when needed, a quiet room. Sleep hygiene is important and various apps are helpful with this. He takes risperidone as and when needed. It is good for dampening mania. Some say 3mg per day risperidone is ideal, but you need to do it in concert with a psychiatrist. Maybe for beginners it is better to be on the medication all the time. He finds CBT useful and neurolinguistic programming to get control over the inner voice that speaks to you every day. Jeremy is taking next week off work as his conference presentations are a potential trigger. He has worked with Bipolar UK peer support groups since 2005. His workplace is supportive, not from the start, but he has done a lot to educate his colleagues. It is problematic whether you should disclose your condition or not. If you are open, all support systems are open to you from outset, but career progression might be limited. He has held down his job for 14 years. Jeremy has tailored his diet to cut alcohol, sugar and caffeine. He finds the book Optimum Nutrition for the Mind, which has a section on bipolar, very helpful. Jeremy has protein at every meal. He found meditation in Taiwan helpful for managing mood whilst at university. However, he added, if you are getting manic, it is hard to meditate. Signs and action plans for manic periods Seeing someone smoking and noticing the nice smell can be an early sign of mania for him. Another sign is getting up very early. He has an action plan if he is getting manic, including cutting out alcohol and caffeine. He takes on no new responsibilities, projects or schemes. He slows activities and reduces stimuli, as well as informing his manager. He also starts to take risperidone. Working from home where possible also helps. Jeremy has been doing taijiquan for five years, which he regards as the most important tool in his toolbox. Taoist philosophy is also very useful for him. He recommends book The Tao of Pooh. He also puts his action plan on the bathroom mirror Jeremy also has an advance statement based on the Bipolar UK one. He finds it important to find meaning for his life and having a purpose. Volunteering helps and also getting out into nature at weekend. He also has a suicide prevention toolkit. The hammer of experience helps him to know that this will pass as he has been through it before. At seventeen. Jeremy experienced his first suicidal thoughts. His last such period was last year. Peer support and Bipolar UK have been crucial. He argued that you need to be careful with language and suicide. We should normalise talking about it, but abnormalise acting out. Digital tools are useful with lots of developments such as beatingbipolar.org, developed by the National Centre for Mental Health in Cardiff and the Healthcare Learning Co, the Stay Alive app, Moodscope, MindTime and the Bipolar UK Community, all freely accessible. He also uses the BNF/BNFC app for drug details. He also has a plan for anxiety. He makes sure there are enough reserves in the tank for unexpected triggers. Mania in his father can also precipitate mania in him. Playing the piano, or doing art, are a big help to him, as are gallery visits. OTHER MORNING BREAKOUT SESSIONS There were three other simultaneous breakout sessions in the morning, Advance Decision Making by Tania Gergel, King’s College London, Suicide Prevention with Paul Osbiston, Papyrus UK, and Bipolar UK Employment Support: Making the 9 to 5 work by Lucy Hassall of Bipolar UK. SELF-MANAGEMENT TECHNIQUES AND MEDICATION There was a breakout afternoon session on self-management techniques and medication by Dr Karine Macritchie. She is the Lead Consultant Psychiatrist at the OPTIMA Mood Disorders Service, a specialist programme at South London and Maudsley NHS Foundation Trust shown to significantly reduce the rate of hospital readmissions for people with bipolar disorder Dr Macritchie said it was important to allow for flexibility in bipolar treatment. Continuity of observation over a period of time is crucial to see the ups and downs of the condition. Mixed states of mania and depression have become more prominent recently. Detecting early warning signs of depression or mania is important. There are skull and crossbones moments, beyond which you cannot stop a manic episode from developing. The GP interface can be difficult, according to Dr Macritchie. There need to be plans to stop sleep being affected. Rescue medications are important and an agreement to have 2-3 days medication for emergencies. Frank conversations over a period may not be possible as continuity of care is less than 50%. Acute phase, continuation and preventive phases may need dose changes. The US clinical psychologist Kay Redfield Jamison is a hero of Dr Macritchie through her books such as An Unquiet Mind in which she describes how lithium saved her life. Sleep and circadian rhythms are important, as is getting the balance right between enough and too much sleep and activity. OPTIMA has four clinicians and an occupational therapist, so is limited in resources. Going back to work and study can be a big ask. OPTIMA builds step by step, with a gradual comeback and workplace plans. As support for carers, Optima is just putting a psychoeducation group together. They want to deal with setbacks and prevent readmissions. If the mania can be reduced, then later episodes will be less severe. Trazodone helps with sleep and anxiety and is prescribed a lot at Optima. Genetic tests A member of the audience commented that she had had an expensive genetic test providing information about how mental health drugs could work better for her. Professor Young said that US tests could cost a fortune and that US doctors are generally against them. He is a big fan of folic acid and its derivatives, especially for women. OTHER AFTERNOON BREAKOUT SESSIONS There were three other simultaneous breakout sessions in the afternoon, Pregnancy and bipolar by Dr Clare Dolman (King’s College London) and Professor Ian Jones (Cardiff University), What opportunities can digital technologies bring for managing bipolar disorder? with Dr Adi Sharma (Newcastle University) and Jeremy Clark) and Support for friends and family by Jacqui Finn (Carers Trust). BIPOLAR DEBATE – DO YOU WISH YOU COULD TURN OFF YOUR BIPOLAR? This conference session was an entertaining panel discussion chaired by Simon Kitchen with four bipolar participants, based on Whose Line Is It Anyway? Simon had received an invitation from well-known 1980s comedian, Tony Slattery, one of the panel members, to go to Liverpool to discuss raising the profile of Bipolar UK. The result was this panel session, which was also filmed by BBC TV’s Horizon for a future programme about Tony due to be broadcast next year. The panel debated whether they would prefer to remain bipolar or turn it off and eliminate the condition. Bipolar as part of a symphony of disorders Panel member, comedian and actor, Juliette Burton, whose shows have sold out four times at the Edinburgh Festival, related how she had been diagnosed over the years with some eleven different mental health conditions, including anorexia, bulimia, compulsive eating disorder, depression, OCD. PSTD, separation anxiety and bipolar. She would be tempted to switch off bipolar just to give some of her other conditions a chance to take the spotlight! Juliette also speculated whether some of her other conditions would just vanish in this case. She commented: I am who I am because or in spite of my mania and creativity, so should would only switch it off for ten minutes. Bipolar can be tiring with its highs and lows and stigma. She said that without bipolar, she would not be a comedian. Juliette does not like the overspending which comes with her bipolar, interwoven into her personality unlike her other mental conditions. She would not want to pass it on to her children. Juliette was diagnosed with bipolar ten years ago. Her first depression was at 13 and she had a traumatic childhood with younger siblings to look after. It came to a breaking point and she was admitted to a Priory hospital and missed her GCSE exams. She is still learning to accept her bipolar. Sometimes she feels she can celebrate the differences, as she will on Instagram and on tour next year. Many positive aspects of bipolar Juliette thought that there were many positive things have happened to her thanks to living with this condition. She had met the panel, who were thinking about forming a band, which had added some glitter to her life. Juliette had been diagnosed with anorexia at 14 and bipolar at 16, some 20 years ago. Juliette had been sectioned at 17 and spent her 18th birthday in a mental hospital. She had been five different times in hospital and had fluctuated between size 4 to size 20. She had experienced some dark stuff, but had also sought out the light and power of humour and believes that every condition has a silver lining to it. The euphoric feeling from mania is best part for her. She believes she owes her career to bipolar, and also, from 2012, through talking about it. If people laugh, it breaks down barriers. Lots of other comedians have mental illnesses. Bipolar as a metaphor for life Panel member Luyando Malawo is an online influencer and Vlogger. She would not switch her bipolar off, as the extra parts, and extra sensitivity, would not be extraordinary. Luyando was diagnosed five years ago after being sectioned for a month. It caused a massive disruption to her life and she was very depressed for a long time. She was also secretly ashamed of it. Luyando regards bipolar as making her more compassionate and imaginative and considers anxiety as the misuse of your imagination. Another reason is that bipolar is a metaphor for life, with its highs and lows, and you can live well despite them. Luyando thinks that if you could turn bipolar off you would see people differently. She said she lived in extremes and undergoes DBT, dialectical behaviour therapy, to help prevent this. Bipolar and bisexual with a depleted wallet Panellist April Kelley, an actress, producer and ambassador for Bipolar UK, would turn her bipolar off. She leaves things to the last minute and finds the condition exhausting, crippling and embarrassing. April also finds it expensive, such as the medication and mismedication she buys. She would also turn it off to give her business partner an easier life. Being bipolar, she joked that she cannot do dating and that the loves of her life only last for three weeks only. Turning off the bipolar might also turn off her bisexuality. April would not want to lose her quetiapine, though, which gives her a good night’s sleep. April was diagnosed with bipolar in March last year, fifteen years after first suffering mental health problems at the age of fifteen. It is problematic, you pick yourself up, dust yourself down, take quetiapine and blame someone else. Humour is good for dealing with mental health issues. No one in their right mind wants to suffer mental disorder. She finds blurred lines between colleagues and friends, but often takes new colleagues under her wing and is a most loyal person. She even flew her makeup stylist hairdresser to LA as part of the team. Not good for her bank account, one of the problems of bipolar. Life saved twice by NHS Tony Slattery said that his life had been saved twice by the NHS thanks to emergency interventions. He has not had a definitive diagnosis as yet, but is expecting one very soon. He thinks that there should be focus on NHS improvement and funding. It currently takes typically six months to see a psychiatrist in UK or more. Tony regards the NHS as a treasure and said that mental and physical states inform one other, science and funding. Bipolar people are often let down by language and the bipolar label can give rise to stigma. There is a large and diverse neurobiology and we should celebrate our differences. BIPOLAR VOTING RESULT Bipolar UK took a poll of 85 bipolar attendees before the conference took place. Some 76% replied that they would turn off their bipolar. In a poll at the end of the panel session, some 65% of bipolar attendees indicated that they would prefer to turn their bipolar off and get rid of it.