Understanding the causes of perinatal mental illness by working with those who’ve lived through it

The post was originally published on MRC Insight under CC BY 4.0

More than 1 in 10 women experience an episode of mental illness in pregnancy or following childbirth. Perinatal mental illness can be severe and have significant implications for women, their families and wider society. Suicide is a leading cause of maternal death and a recent report has estimated that the economic costs to society of the women each year who experience maternal mental illness is in excess of £8 billion. This is through the impact of illness on the women, but even more through the impact on the next generation.

There is still a great deal of stigma around mental illness and many new mothers suffer in silence, afraid to get help for fear that it leads to losing their baby.

As a clinician, I meet women with severe mental illness considering having a baby and I know what difficult decisions they must make about continuing or stopping the medication that may be keeping them well.

These conditions are serious, and cause significant difficulties for women and their families. We need to find better ways to help women with perinatal mental illness and it is my strong belief that we will only achieve this when we understand what causes these illnesses. Research is desperately needed therefore – not for its own sake – but because this is how we are going to make the big leaps forward in prevention and treatment.

At the MRC Centre for Neuropsychiatric Genetics and Genomics in Cardiff we are committed to understanding the causes of mental illness. The fact that these conditions often run in families, and genetic factors make some people more vulnerable, are important clues that give us a way of understanding the underlying biology of these disorders. We have known for a long time that genes are likely to be involved – we now have the scientific tools to find the individual genetic variants that increase or decrease risk.

We are making great progress with conditions such as schizophrenia and bipolar disorder and we have now identified many genes that we can be confident are involved. There are hundreds, probably thousands, of genes likely to be involved in these conditions. Each one only nudging up or nudging down risk by a very small amount. The reason to identify them is to see patterns in the genes involved that will point to biological systems that we may not have previously considered and that may be targets for the development of novel treatments.

So it’s complicated. Very complicated. But this is no surprise. As people, we are the complex interaction of biological, psychological and social factors. Mental illnesses are no different. It is a very exciting time in psychiatric research because genetics is bringing new insights into these conditions. I am excited about the possibilities that genetics bring for our understanding of perinatal mental illness.

I am new to twitter (@jonesir if you want to follow me) and am still getting the hang of it, but when asked to participate in the weekly #PNDhour twitter chat I was delighted. It was great to discuss perinatal mental health with women with lived experience and interested clinicians. I was expecting it to be difficult to keep up – and was worried about being able to express difficult concepts in 140 characters – but it was great. A massive thanks to @cooksferryqueen who hosts the chat and all who participated, the hour flew by. It’s so important for researchers to hear from those who have experienced the conditions they study. The perspective that lived experience brings is invaluable. Its also a reminder of why the work is so important. The research will ultimately be judged not on the impact factor of papers, nor on the total grant income it generates, but on how it has made a difference to the women with whom I was “chatting” last night.

Because the experience of all women is different – as you can see in the twitter chat below or on storify – we need very big numbers of participants in our research. In our bipolar disorder research in collaboration with the University of Worcester we have interviewed over 6000 people with bipolar disorder. The Psychiatric Genomics Consortium currently brings together data from over 900000 individuals to allow researchers to analyse a huge amount of data and find out more about how our genetic data relates to our mental health. Through the National Centre for Mental Health we are now building up the number of participants with perinatal mental illness we will need for this work. In collaboration with many other clinicians and researchers around the world we aim to build the network of women with lived experience participating in research to the tens of thousands. Together we are stronger, and together we can beat perinatal mental illness.

#PNDHour connects those with lived experience of perinatal mental illness, as well as health professionals and campaigners. As part of the MRC Festival of Medical Research, I joined the weekly Twitter chat to hear people’s thoughts and experiences and talk about genetics. You can see a summary of the #PNDhour twitter chat that I took part in this week below.

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Professor Ian Jones receives funding from Wellcome Trust, Stanley Medical Research Institute, Medical Research Council, Health and Care Research Wales, EU.

Other relevant affiliations – Trustee of Action on Postpartum Psychosis