Between one in 500 and one in a thousand women suffer from postpartum psychosis after childbirth. It's an illness which often appears rapidly and without warning and leaves women in the grip of psychotic delusions or of mania. They talk of losing touch with reality and feeling split and fragmented. However, because it's comparatively rare and can happen to women with no history of mental illness, postpartum psychosis may go undiagnosed or be confused with post natal depression. In fact if it's treated properly, recovery from this very severe disorder can be very swift.
Now Radio 4 has been offered unique access to a group of women who have experienced the illness. They're taking part in an art project, funded by the Wellcome Trust, whose aim is to raise awareness of the condition.
As they meet at a workshop and in the artist Joan Molloy's studio they talk openly about what they went through, the hallucinations they suffered in the depths of the psychosis and their journey back to health. They also tackle the difficult topics of whether they wanted to harm themselves or their baby, the decision about whether to have a second child, and their perception of themselves as mothers.
The art project is supported by leading perinatal psychiatrist, Dr Ian Jones, who is working with teams in Cardiff and Birmingham universities to try to discover what it is about the physical experience of childbirth that triggers the illness. He tells us if they were able to establish whether some women had a genetic pre-disposition to the condition, it would be possible to predict which women were at high risk and to take the right steps before rather than after the illness has struck.
Presented by former journalist - Clare Dolman, who suffered an episode of postpartum psychosis herself after the birth of her first child twenty two years ago. She is a trustee of Action on Postpartum Psychosis and now works to raise awareness of the disorder.
Producer: Philippa Goodrich
A White Pebble Media production for BBC Radio 4.
Congratulations to Steph Brackpool and Mark Cox (Ward Manager of the MBU at Birmingham) for completing the Cardiff Half Marathon on behalf of APP. Steph hit 60 years old in January this year and has not done a competitive run before. This was Mark's first run too. Steph's and Mark's fundraising sites at Virginmoneygiving will remain open for another month. So far they have raised over £1200 for APP. Steph writes about her experience here. If you would like to join the APP running team and help to raise money for APP get in touch with Heather, Sue or Nicola at email@example.com
APP are delighted to be working with artist Joan Malloy on this exciting Wellcome Trust funded arts project. Joan is developing a body of work which reflects upon issues of motherhood, inheritance and the familial implications of PP. A weekend workshop earlier this year allowed Joan to hear the experiences of a number of women from APP. The work is progressing well and has been the subject of a Radio 4 documentary that aired on December the 4th 2011. We are very excited about this project and look forward to sharing with you the work that is produced next year.
Joan’s past work has been an exploration of time, focussing on memories of childhood, family relationships and ageing, through a combination of photography, film, object-making and installation. Following years where her work has focused on family relationships – exploring shared experience from multiple perspectives – the work with APP will be a natural progression – exploring the shared experience of motherhood from the multiple perspectives of those who took part in the workshop. Joan’s intention is to create work which includes an arresting piece of film, which encapsulates the genetic science and values the personal narrative accounts from women from APP who have participated in the project.
The BSMHFT Perinatal Mental Health Research Conference in collaboration with Action on Postpartum Psychosis and the Marce Society will take place on July 8th 2011 at the Birmingham Medical Institute. All are welcome! Speakers include: Professor John Cox (identifying postnatal depression), Dr Margaret Oates (the most recent Confidential Enquiry into Maternal Deaths); Dr Ian Jones (postpartum psychosis); Dr Carol Henshaw (normal emotional changes following pregnancy); Dr Dawn Edge (considering BME issues); Dr Jess Heron (Mother and Baby Units), Dr Amanda Daley (exercise and PND); Dr Jo McCleery (infant health), Sukhi Sembi (peer support), and many more. Places are limited, so book asap to reserve a place. For further information and a booking form, contact: Shazia.firstname.lastname@example.org
Early in 2010 we set about applying for formal charitable status to help us raise money for research into PP and APP projects. We are nearly at the finish post, and will have a charity number in early 2011. We thank Heather and Sue for their dogged determination with the process and paperwork. We now have a formal structure with a steering committee, chair, vice chair, secretary, and treasurer.
Until now, Ian and I have answered emails from members in an ad hoc way. Over the next year, Nicola Muckelroy will be setting up a Peer Support Network using trained volunteers who have recovered from PP themselves. Initially they will offer support to women and their families via email. People should telephone the Cardiff office to join APP, for information about peer support, or for signposting to resources and sources of advice.
In terms of research, we have had an exciting year. Our molecular genetic work is producing interesting findings, including overlaps with another pregnancy related condition, pre- eclampsia. Ian explains more about these exciting findings on the research page. We have produced the first piece of formal evidence from our postnatal care survey that Mother and Baby Units are more appropriate than general psychiatric units for women with illness following childbirth. We are also leading the way in terms of 'service-user' research, with a publication due out next year and presented at UK and international conferences.
Plans for 2011 include a postal survey and telephone interview study of the experiences and support needs of partners during an episode of PP. A media training workshop is planned offering women who wish to raise awareness of PP the chance to practise with real equipment and experienced trainers. Rachel’s study on changes in identity after PP will be complete next year. A study of second pregnancies is recruiting women who are pregnant or planning pregnancy, and, of course, our large scale studies of the causes and genetics of PP will continue to produce exciting results.
APP was represented at several conferences in 2010, both nationally and internationally. We started off in London in March at the Mental Health Research Network’s (MHRN) Service Users’ Annual Conference. Delegates at the day-long event visited the APP display and took newsletters away with them to spread the word about our new website. Even more people did the same at the two-day Scientific Conference of the MHRN in April which was held at Bristol.
In June we had a whole team attending the annual Conference of MDF the Bipolar Organisation held at Birmingham University’s Medical School. Because of the high risk of postpartum psychosis for women with bipolar, our stand attracted a great deal of interest from women and their partners eager to find out about the risks and the best way to cope with them.
In the Autumn, we ventured further afield to Pittsburgh, USA, for the Biennial International Conference of the Marcé Society. The Society was named after Louis Victor Marcé, a French psychiatrist who wrote the first treatise entirely devoted to perinatal mental illness, published in 1858. Its principal aim is to promote, facilitate and communicate about research into all aspects of the mental health of women, their infants and partners around the time of childbirth. With hundreds of delegates from all over the world attending, this was a great platform to tell people about APP and make them aware of our resources for women who have suffered postpartum psychosis – and for health workers who need to learn more about the condition.
I gave a presentation telling delegates about the work on recovery that members of APP produced with Dr Jess Heron and a team of researchers in Birmingham last year. Dr Jess Heron gave a presentation about ‘Women's satisfaction with Mother and Baby Unit care versus other models of postpartum psychiatric care’. Dr Jones gave a keynote speech about new research into Postpartum Psychosis. There was a lot of interest, especially from American colleagues, in the potential of the APP website as a source of support and information for women in this situation wherever they live in the world. APP got another mention on the main stage when Dr. Ian Jones accepted the Marcé Medal for his outstanding contribution to perinatal psychiatric research.
We are extremely grateful to the Mental Health Research Network Heart of England Hub for providing a small grant to enable women with experience of PP to attend and present research at UK and International conferences.
APP again featured at the annual conference of MDF the Bipolar Organisation held in London.
Rachel Perkins OBE was among the speakers, and workshops will included a Q & A session on medication with MDF Bipolar Vice Chair Dr Nick Stafford, advice on benefits and allowances, and a discussion forum led by Professors Nick Craddock of BDRN and Steven Jones of the Spectrum Centre.
There was also be a workshop entitled Thinking about Motherhood: Bipolar, Pregnancy and Childbirth led by Dr Ian Jones, Reader in Perinatal Psychiatry at Cardiff University and Clare Dolman MDF Bipolar Chair of Trustees – both members of APP’s Board.
We were delighted to support MDF the Bipolar Organisation – the only national charity for people affected by this disorder – in the staging of their conference and really enjoyed a fascinating day – and a great chance to network!
In October this year over 500 researchers, health professionals and mental health advocates gathered at the biennial Marcé Society Conference in Pittsburgh, USA to share new research in the understanding, prevention and treatment of mental illness related to childbearing. The Conference was opened by US former first lady Mrs Rosalynn Carter and included over 140 talks related to perinatal mental health.
The Marcé medal is awarded every two years to an individual in recognition of a major contribution to the aims of the society. This year, we are very proud to announce that it was awarded to Dr Ian Jones in recognition of his research into Postpartum Psychosis. Ian’s keynote presentation was entitled “Postpartum psychosis: known knowns, known unknowns, and unknown unknowns”.
Dr Jones said “I am delighted that the work of our research group has been recognized with the award of the Marcé Medal. Postpartum psychoses are some of the most severe episodes seen in psychiatry. It is vitally important that we understand more about this condition, so we can develop better treatments and provide hope to women and their families.” Ian becomes president of the UK & Ireland Marcé Society this year.
Gaynor believed in making a difference. She was a passionate advocate for research, believing that we must do everything we can to understand puerperal psychosis and bipolar disorder: the condition that finally took her life. She was a “Research Champion” for the Bipolar Disorder Research Network (BDRN) and advisor to Action on Postpartum Psychosis (APP) making an invaluable contribution to our work. Gaynor featured in the Stephen Fry documentary “The Secret Life of the Manic Depressive” discussing the difficult decisions that she and other women face when considering pregnancy. Although the documentary was unable to do justice to our complex discussions, she believed that it was important that the issues were raised. She believed in better services for women making difficult choices regarding pregnancy.
Last year we chaired a workshop at the national MDF conference on pregnancy and childbirth. The room was packed and the discussion heated but when Gaynor spoke about her experiences, everybody listened. Al- though she was very unwell after his birth, it was obvi- ous to me that she was a wonderful and devoted moth- er to Thomas. Her untimely death reminds us that this illness can be cruel and heartbreaking. She became a colleague and friend to us at APP and will be greatly missed.
Ian Jones on behalf of APP