Written evidence submitted by Bipolar UK and its Expert Advisers, including:

• Dr Clare Dolman, Bipolar UK Ambassador and Lived experience Researcher who completed a PhD on Women with Bipolar Disorder’s decision-making around pregnancy at the Institute of Psychiatry, Psychology and Neuroscience, King’s College, London. Co-chair of the Bipolar Commission, 2021-2-22.
• Dr Arianna Di Florio, Clinical Senior Lecturer Cardiff University who is a psychiatrist specialising in issues affecting women with severe mental illness.
• Ian Jones, Professor of Psychiatry /Director - National Centre for Mental Health, MRC Centre for Neuropsychiatric Genetics and Genomics Cardiff University.
• Prof. Allan Young, Chair of Mood Disorders at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London and trustee of the charity.

Summary

Bipolar UK is the only national charity for people affected by this serious, lifelong mental illness (over a million people in the UK). We are a user-led charity and the following submission draws on the voices of many people with lived experience of bipolar disorder who work or volunteer for the charity as well as the academics and clinicians who support us.

We address the following topics related to the numbered core themes identified in the Open Consultation.

1. Placing women’s voices at the centre of their health and care

a) Menopause and its impact on long-term mental health conditions:

Menopause is not only a stigmatised, often ignored transition which can have very detrimental health effects on women in their forties and fifties. For women with bipolar disorder it can have devastating, even life-threatening effects.

Reporting women’s voices on this subject:
As a volunteer support worker for Bipolar UK over the last 11 years, numerous women have told me that they have approached their GP around the time of menopause because they were concerned that the hormone shifts they were experiencing were having an additional impact on their bipolar disorder. Regrettably, the symptoms they were experiencing have too often been dismissed by GPs as ‘just what happens at menopause’ – and they have been denied referral to a psychiatrist. In some reported cases this has led to psychiatric hospitalisation or suicide attempts.

The charity has very recent evidence on this point as our recently launched Bipolar Commission has just received the results of a survey completed by over 2,500 people with bipolar (embargoed, results available on request). Initial findings show that 302 women with bipolar cited menopause as a “trigger” of their psychiatric illness (this represents about 20% of all female respondents but as the survey covered all ages including many under 45 this will inevitably be higher in the final analysis).

Also see the Bipolar UK e-forum for the concern on this subject: https://ecommunity.bipolaruk.org/categories/menopauseandbipolar There have also been 27 separate discussion threads in the new Menopause category of the e-forum which began in April 2020.

I offer this ‘anecdotal’ evidence because scant academic research has been done on this subject. Women themselves know that there is an obvious relationship between hormonal changes at the time of perimenopause and menopause – when moods can be greatly affected – and serious, lifelong mood disorders such as bipolar disorder. Many women with bipolar in our forums and support groups are disappointed to learn that so little research effort has been put into examining this connection in order to alleviate the suffering it causes. What has been done indicates there is such a link, backing up what we hear from women themselves (see evidence from Dr. Di Florio below).

Bipolar UK endorses the conclusion of the authors of a systematic review on Menopause and illness course in bipolar disorder (Perich et al., 2017):

“The impact of menopause on illness course for women with bipolar disorder is largely under-explored. Preliminary evidence suggests that it may be associated with increased bipolar symptoms. Further work is needed to explore how menopause may interact with bipolar disorder over time and the nature of these symptom changes, and if and how menopause may differ from other reproductive stages.”

b) Menstruation

Similarly, women with mood disorders frequently report that their extreme mood swings are exacerbated or sometimes triggered by their menstrual cycle (see Bipolar UK’s eCommunity for discussion of this). Again this is too often dismissed by their GPs.

2. Improving the quality and accessibility of information and education on women’s health

An extremely important aspect of managing severe mood disorders such as bipolar disorder and major depressive disorder is learning about the condition and how it affects each individual: what are their particular triggers and how best to deal with them and an essential part of this ‘self-education’ is easy access to reliable information on the condition.

The particular way in which hormonal fluctuations impact these conditions has been woefully under-researched and so it is very difficult for health professionals or patient organisations such as Bipolar UK to give detailed information on questions that women ask again and again: “Why do my periods trigger my bipolar?”. “How can I reduce the impact of this interaction between my menstrual cycle and my illness which is causing me to lose many days of work?” “Why am I feeling suicidal – why does my doctor dismiss me as ‘just menopausal’?”

Currently the NHS webpage on ‘Menopause’ contains no mention of the health risks around the time of menopause for women with existing psychiatric conditions. It states: “Some women experience mood swings, low mood and anxiety around the time of the menopause…Antidepressants may help if you’ve been diagnosed with depression”. If women with bipolar disorder take anti-depressants it can trigger a severe mania. There should be some mention of the possibly serious implications of menopause for women with bipolar and other conditions with signposting to better sources of information.

Women with bipolar need information on what they can expect to happen when perimenopause and menopause hit them. Sadly, Bipolar UK knows of several women who completed suicide at this time (we can provide case studies, two in the last year). They had not been informed of the possible effect of the hormonal shifts on their bipolar and so did not know to seek help before things overwhelmed them.
In our recent Bipolar UK survey, we asked “Did you receive any advice on the possible impact of hormonal changes on your bipolar?” Only 12.5% of respondents had. The need for information and education is particularly relevant in conjunction with the next core theme:

3. Ensuring the health and care system understands and is responsive to women’s health and care needs across the life course

This is because women with mood disorders have to live their whole lives both with their mental health condition and the additional impact that hormones have on that condition. The most extreme example of this is the significant number of women in this category that become ill in the perinatal period. For example, as many as one in two women with bipolar will suffer an episode related to pregnancy and childbirth. As many as 20 – 25% (Di Florio et al., 2013) experience a postpartum psychosis, a psychiatric emergency usually requiring lengthy hospitalisation, preferably with their baby in an MBU (Wesseloo et al., 2015, Munk-Olsen et al., 2009, Jones and Craddock, 2005).

The reason for this strong association between childbirth and rapid relapse in women with bipolar disorder is not known, though it has been hypothesized with some support that the drop in oestrogen and progesterone levels that occurs after delivery is implicated in some way (Bloch et al.,2000).

This would indicate that women who have had a postpartum psychosis may be at particular risk of dangerous mood swings during perimenopause and menopause. Sadly, we have recorded several suicides where hormonal susceptibility triggering mental illness and suicidal thoughts have been implicated and even referred to by the coroner at inquest, but there is no research into the frequency of such occurrences or why they might have occurred. This leaves women in the dark with no information and guidance as to how to deal with the approach of menopause.

Not only is this a tragedy for the women who lose their lives and their devastated families but it also leads to much suffering for women with mood disorders who become ill triggered by hormonal fluctuations at this time; suffering that often requires expensive treatment. In our view much of this suffering could be avoided if

a) research on the interaction between hormones and mood disorders across the life course was conducted which could inform high quality information for women diagnosed early in their lives, and
b) clinicians were trained to highlight this danger to women so that they and their families could be aware of it and take preventative action at the appropriate time.

The Department of Health & Social Care submission guidance particularly called for ‘evidence on the training and education provided to clinicians on sex and gender differences’.

Our charity has very recent evidence on this point as the new Bipolar Commission referred to above included some questions on this subject in our first survey completed by over 2,500 people with bipolar (preliminary results available on request).

As mentioned above, 87.5% of respondents said they had received no advice from health professionals on the effects of hormonal changes on their condition. This disappointingly high figure corresponds to women’s own testimony when interviewed about their interaction with clinicians (Dolman 2019). Several women said they had been given no information on this subject, even on the well-documented risks of childbirth. Fourteen general psychiatrists were also interviewed, nearly half of whom said they did not prioritise giving this information to women they diagnosed with bipolar (Dolman 2019).

This needs to be addressed by improving the training of health professionals and highlighting to them the need to take these issues seriously and talk to their patients about the risks they pose.

Training for health professionals, in particular medical students

There is very little information on the impact of hormones on women’s health, physical and mental, over the life course included in the training curricula of medical students. At Cardiff University Medical Faculty, a module on this topic has been developed by Dr Arianna Di Florio. Though it has been available for the last two years it is not compulsory and only female medical students have chosen to attend it. As far as we know, this module is the only one of its kind in the UK.

The module includes the following elements:

• Reproductive psychiatry and women’s mental health
• Sex steroids and the brain
• Reproductive mood disorders
• Prescribing in pregnancy

The Faculty at Cardiff is considering making this module compulsory for all medical students. Bipolar UK support this and would recommend it be duplicated to cover the whole of the UK so that in future all medical students receive some training in the mental health implications of hormonal changes.

Lack of services

Cardiff University provides, as far as we know, the only Reproductive Mental Health Clinic that’s open to all women in the UK free of charge (‘Reproductive’ in this context focuses on preconception and perinatal care but also includes the interaction of mental illness with other hormonal events such as menopause or around menstruation). Because of capacity, they see women only for second opinions. It is too soon to audit the service, but the plan is to do so.

There is only one other clinic women with serious mental illness in the UK can access, the Female Hormone Clinic, at the Maudsley Hospital, London, which sees NHS and private patients. From our canvassing, few GPs or psychiatrists know about these services. The handful of specialist “Menopause’ clinics around the country cater for the general female population. Even the British Menopause Association does not include any training on the hormonal interactions with severe mental illness.

4. Maximising women’s health in the workplace

Not being given the information and tools to self-manage their life-long condition inevitably affects women with bipolar’s productivity in the workplace, making them more likely to have periods off sick. It can also have a very detrimental effect on their children and families, particularly if they suffer serious episodes of illness triggered by hormonal events which lead to hospitalisation.

5. Ensuring research, evidence and data support improvements in women’s health

We applaud the Minister’s ambition to ensure “that we have the right data and evidence to improve women’s health outcomes and experiences of healthcare services.” As indicated above, the need for more research on the impact of hormones of mood disorders is urgent due to the woeful neglect of this area by the largely male-led research establishment. Women will not get the information they need to help themselves stay well unless research activity in this area is ramped up.

There is no women’s health without women’s mental health

Part of the reason why there has been so little research in the field of menopause/menstruation is that it is usually for some reason seen as a purely gynaecological problem, with consequences for women, their care and research in the field. Women with lifelong mental health conditions deserve better treatment and better information to be able to help themselves.

There is a lot of interest in this topic from women with bipolar disorder themselves because of the suffering they are enduring, but there is little evidence on which to base information that’s useful to them or to help develop treatments. The subject is at the intersection of two stigmatised topics: reproduction, especially around reproductive aging and mental health. The graph below shows the proportion as % of research articles (i.e. articles providing new scientific evidence in blue) over total articles published and listed in PubMed up to September 2019. As you can see, there is a particular paucity of evidence for severe reproductive disorders.

A. Di Florio, 2021

Lack of funding and research opportunities

Bipolar disorder is in general underfunded compared to schizophrenia and major depression (Vieta & Angst, 2021).

Research on any severe mental illness that addresses issues related to reproduction requires women to be followed up for a long period of time and requires information that usually is not contained in electronic health records. In the current funding climate, where most grants are awarded for 2-5 years, this type of research cannot be conducted without a clear systematic, coordinated plan. For example, UK Biobank, which includes all possible questions on aging, does not include measures associated to the perimenopause such as vasomotor symptoms. While studies on aging like UK Biobank have not considered reproductive aging (limiting this to two questions on final menstrual period and HRT), studies specifically on women’s health have often neglected women with severe mental disorders, only reporting on depression.

Recommendations from Bipolar UK

1) Increased investment in research on the interaction between female hormones and mental illness to inform treatment and also to provide information to women themselves.

2) A particular research focus on the impact of hormonal changes in women with severe, lifelong mental illnesses such as bipolar disorder, schizophrenia and major depression.

3) Increased research on ‘sex hormones’ and their effects on the mind in both females and males. For example testosterone levels are significantly lower in male patients with bipolar disorder and significantly higher in female patients compared to controls (Wooderson et al., 2015). If explored, this could be an exciting new avenue for developing new treatment strategies.

4) Significant gender effects should not be ignored in major longitudinal studies on ageing and collection of data on the effects of hormones on women’s health should routinely be included.

5) A module on ‘Hormones and their Impact on Mental Illness’ should be included in the training of health professionals, particularly doctors, psychiatrists and mental health nurses, and should be provided across the UK. It should be a mandatory not elective course.

6) Government could collaborate with third sector service user organisations such as Bipolar UK to develop nationally available self-management courses. Education for women on this topic could be improved by supporting initiatives such as educational webinars with a dedicated peer support element which include specific modules on menstruation, childbirth and menopause and how they impact bipolar disorder and other lifelong conditions.

7) Information resources (such as the excellent online resources developed by PHE with Tommy’s charity and King’s College on preconception advice for women with serious mental health conditions and guidance for the professionals who treat them) should be developed and made accessible to women. This would help to plug the current information gap and could serve as a recruitment platform to aid much-needed research in this area.

8) Related to 7), the NHS webpage on Menopause should be updated to include specific information and signposting for women with serious mental health conditions.

9) There should be clear signposting from health professionals (particularly GPs) for women to specialist help. Clinicians could also direct women who need support on these issues to forums that can provide peer support such as Bipolar UK and other mental health charities (who need tailored information on this subject).

10) Government should provide ring-fenced support for organisations, including the third sector, who, while providing services for all genders, also offer specific support to women with mental illness (for example, Bipolar UK, APP - Action on Postpartum Psychosis, MIND, PANDAS, TOMMY’S etc). Some of these charities train staff and/or volunteer peer supporters with lived experience of the conditions suffered and are able to offer much-valued support on these hormone-related issues around childbirth and menopause to women, partners and families. Financial support for this work is very cost-effective in that it plays a crucial role in keeping women from becoming suicidal or relapsing and having long hospital stays. For example, Bipolar UK’s independently evaluated support groups have been shown to reduce demand for health and social services by £2,492 per person per year (‘Side by Side’).

References

Bloch, M., Schmidt, P. J., Danaceau, M., Murphy, J., Nieman, L. & Rubinow, D. R. 2000. Effects of gonadal steroids in women with a history of postpartum depression. American Journal of Psychiatry, 157, 924-930.

Jones, I. R. & Craddock, N. 2005. Bipolar disorder and childbirth: the importance of recognising risk. The British Journal of Psychiatry, 186, 453-454.

Di Florio, A., Smith, S., & Jones, I. R. (2013). Postpartum psychosis. The Obstetrician & Gynaecologist, 15(3), 145-150.

Dolman, C. (2019) Women with bipolar disorder and pregnancy: factors influencing their decision-making regarding treatment. https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.784563.

Dolman, C., Jones, I. R., & Howard, L. M. (2016). Women with bipolar disorder and pregnancy: factors influencing their decision-making. BJPsych open, 2(5), 294-300.

Munk-Olsen T, Laursen T., Mendelson T, Pedersen Cb, Mors O, Mortensen PB. 2009. Risks and predictors of readmission for a mental disorder during the postpartum period. Arch Gen Psychiatry, 66, 189-95.

Perich, T, Ussher, J, Meade, T. Menopause and illness course in bipolar disorder: A systematic review. Bipolar Disord. 2017; 19: 434– 443

*Side by Side Evaluation: Economic Analysis calculated that the average person living with bipolar used £2,733 of health services of a year

Scott J, Colom F, Popova E, Benabarre A, Cruz N, Valenti M, et al. Long-term mental health resource utilization and cost of care following group psychoeducation or unstructured group support for bipolar disorders: a cost-benefit analysis. Journal of Clinical Psychiatry. 2009;70:378-86

Vieta, E., & Angst, J. (2021). Bipolar disorder cohort studies: Crucial, but underfunded. European Neuropsychopharmacology: the Journal of the European College of Neuropsychopharmacology, 47, 31-33

Wooderson, S. C., Gallagher, P., Watson, S., & Young, A. H. (2015). An exploration of testosterone levels in patients with bipolar disorder. BJPsych open, 1(2), 136-138

Wesseloo, R., Kamperman, A. M., Munk-Olsen, T., Pop, V. J., Kushner, S. A. & Bergink, V. 2015. Risk of postpartum relapse in bipolar disorder and postpartum psychosis: a systematic review and meta-analysis. American Journal of Psychiatry