Dr Jess Heron interviews Mark Casebow, Director of Louis Theroux’s new documentary, Mothers on the Edge.

It was lovely to meet you during the process of filming for the new documentary. We are delighted that Louis is helping to bring this issue into the mainstream. It’s only the second documentary that has managed to navigate the many ethical & practical issues involved in making a documentary like this, so it’s a huge credit to you and Flo to have successfully navigated this.

Did you know about Postpartum Psychosis before you started filming?

No, I don’t think I had ever heard of PP before starting this project. I had some basic knowledge about postnatal depression, but I was pretty ignorant about perinatal mental health to be honest.

What was important to you in the making of the programme?

Mother and Baby Units are such an unfamiliar world to most people. The idea was for Louis to experience what it’s like for patients in crisis, and also their families and the staff who try to help them recover.

Despite people being much more open about their struggles with mental health issues in recent years, it still feels like there is a particular taboo or stigma around discussing mental health issues brought on by having babies.

It was really important for us that everyone taking part was happy with the way we have handled their stories, and I hope that they feel that participating in a documentary has been a positive thing to have done during such a difficult time in their lives.

Was there anything that surprised you?

Many things were surprising - like most people I had never set foot inside a psychiatric ward. You carry lots of preconceived and often inaccurate ideas about what they are like. But mostly I was surprised by the honestly and bravery of the women and their families who allowed us to film them at an extremely vulnerable time in their lives.

You met up with the APP team during the filming process - how was this helpful?

It was really helpful to understand more about the condition from recovered women and also from an academic perspective, and to hear more about care and campaigning nationally. It was useful to hear about the messages that women and families who have experienced this illness would like to share with the public.

Hearing about your work helped us to appreciate how much women can benefit from talking about their experience with people who have been through something similar during their recovery, and we saw that on the MBU's themselves with patients often forming really strong friendships there.

We hoped we could show peer support in action at an APP café group, but unfortunately it was not possible in the time frame.

What do you hope the impact of the programme will be?

I hope that the documentary will do something to help to reduce the stigma around PP and other mental health crises that can happen after having a baby. I also hope it will raise awareness of these issues more generally and show people the extraordinary work done by mother and baby units.

Are there any ambitions you had for the programme that were practically or ethically unfeasible?

We knew that filming patients as they were experiencing acute PP was difficult for a number of reasons and we would only be able to proceed cautiously and with the consent of the family and clinicians. We also knew would have to seek consent again from patients when they had recovered and had capacity to participate in the filming.

As expected it did prove very difficult to start filming with patients whilst they were most unwell, but we also made a positive decision to not just focus on the acute phase of the illness and to follow patients during recovery and the difficult transition to living back at home.

What would you most like to change in the future for women and families affected by PP?

The Mother and Baby Units we filmed in were all filled with dedicated staff, I feel like they are a real NHS success story and I hope that this comes across in the documentary.

Like all public services these units are juggling scarce resources with high demand. I hope soon what is still a patchy national service will become available to all women who experience PP no matter where they live.

It was also clear that community mental health services are really overstretched in some areas and this can make the transition home more difficult for many women and their families.

Hopefully more funding will also be directed towards recovery, and to support services like those APP provide for women and their families once they get back home.

Louis Theroux’s documentary Mothers on the Edge will be broadcast on Sunday 12th May 2019 at 21:00.

Visit the BBC Louis Theroux Programme page for more information.

APP began life as a research network: helping to facilitate studies of PP; translating research findings into information for women, families and health professionals; and enabling women and families to contribute to the research process.

We are passionate about encouraging research into all aspects of PP. The unknowns surrounding this illness are distressing for women, families and their health professionals. We try to keep our members up-to-date with new research into PP from all over the world.

APP works closely with researchers at Cardiff, Birmingham and Worcester Universities. We also support recruitment & lived experience engagement for other academic research and student projects, where our resources allow. If you would like APP to support your research, please get in touch at an early stage in planning.

Here is a round up of the studies we have helped with in 2018/19.

Please get in touch if you would like to hear more about taking part in any of the studies

Pregnancy and Birth Plans for those at risk of PP

Elen Thomas - PhD Student, National Centre for Mental Health (NCMH), Cardiff University. Elen is working with APP to develop and test a new guide to support decision making for women with Bipolar Disorder or previous Postpartum Psychosis during pregnancy and the postpartum period. The guide will review the issues for women and their health professionals through the process of planning conception, pregnancy, and the postpartum period, outlining the facts at each point and decisions to be made. The guide will allow women to lead the discussion with their clinicians, and help women and professionals work together to implement gold standard care during this time.

Status: currently recruiting - If you have experience of planning a further pregnancy after an episode of PP or a Bipolar Disorder diagnosis, or have had an episode of PP or Bipolar Disorder and are considering having a baby, please get in touch, email: ThomasE45@cardiff.ac.uk

Experiences of PP in women from Black and Minority Ethnic groups

Lauren Walsh - Trainee Clinical Psychologist, Staffordshire University

Lauren is working with APP to conduct a qualitative study of the experience of Postpartum Psychosis and information & support needs in women from BAME communities. Lauren aims to recruit 8-10 women.

Status: currently recruiting - If you are from a non-White or mixed ethnic background, have experienced PP, and would like to know more about this study, please get in touch: app@www.app-network.org

Accessibility & Acceptability of Specialist Perinatal Mental Health Services to women and families from Black and Minority Ethnic groups

Dr Jelena Jankovic & Prof Stephan Priebe - Birmingham & Solihull Mental Health Foundation Trust & Unit for Social & Community Psychiatry, Queen Mary University of London.

This NIHR funded study will investigate perinatal mental health service use differences in UK women from different ethnic groups. It will examine pathways to care in women from BAME backgrounds compared to White British backgrounds at 2 sites in London and Birmingham. It will explore attitudes to services of women, their family members and health professionals. APP is a study partner and will support study recruitment, the dissemination of findings, and will employ, train and support a lived experience researcher to conduct some of the qualitative interviews for the study.

Status: planning stage. If you have experienced PP, are from a BAME background, and would like to support with planning this study, or express an interest in being a lived experience researcher, please get in touch: app@www.app-network.org

Clinical & Molecular Genetic Studies of PP

Prof Ian Jones - National Institute of Mental Health, Cardiff University

This research aims to identify genes and other factors (such as sleep disturbance and stressful life events) that make some people more likely than others to experience Postpartum Psychosis. Finding genes is not an end in itself, but we hope it will help us understand the causes and biology of Postpartum Psychosis, in order to identify medications and strategies to prevent these severe episodes of illness. In order to have a chance of finding genes, we need a lot of women to take part.

Status: currently recruiting. If you have experienced PP, or a relapse of Bipolar Disorder after childbirth, and would like more information about taking part in this study, email: moodresearch@worc.ac.uk

The impact of Postpartum Psychosis on Partners

Nia Holford - NIHR, Cardiff University

Status: closed. This qualitative study investigated the experience of PP for partners. You can read about the study here: https://rdcu.be/9WTr

The impact of postpartum psychosis on partners’ relationships with mother and baby.

Rachel Jack - Trainee Clinical Psychologist

This qualitative study aims to explore how postpartum psychosis affects partners’ relationships with mother and baby.

Status: recruiting from May 2019. If you are over the age of 18 and have been a partner of a mother with PP. To take part, email: T7127956@tees.ac.uk

The role and experience of Occupational Therapy in Perinatal Mental Health Services

Mandy Graham - Occupational Therapist, PhD student & Senior Lecturer, Leeds Beckett University

This qualitative study involves interviewing Occupational Therapists working in Perinatal Mental Health Services and women with experience of receiving Occupational Therapy as part of their treatment for a Perinatal Mental Illness.

Status: awaiting ethical approval

Partner's Experience of Postpartum Psychosis

Cari Davies - Psychology Master’s student, University of Liverpool

This qualitative study will investigate the support needed by partners in order to act as a source of support.

Status: currently recruiting. If your partner has experienced PP in the last 5 years, but more than 6 months ago, and are over 18 years of age, please email cari.davies@hotmail.co.uk to complete this online questionnaire.

Mothers' experiences of first onset postpartum psychosis and impact on the mother-infant relationship

Siobhan Kelly - Trainee Clinical Psychologist, Royal Holloway University of London

This qualitative study aimed to investigate mothers’ feelings towards her infant and her role as a mother during pregnancy, birth, the postpartum period, to onset of postpartum psychosis and through to recovery and present time.

Status: closed. The study found that women with first onset PP did not feel the experience has long term impacts on the mother-infant relationship. You can read more about the study findings here. For more info: siobhan.kelly.2015@live.rhul.ac.uk

Individualising the risk of recurrence for women with bipolar disorder in the perinatal period

Marisa Casanova Dias - Clinical Research Training Fellowship, NIMH, Cardiff University

The aim of this project is to understand better the factors that influence an individual woman's perinatal risk of a bipolar recurrence, which will enable women and their clinicians to make better informed decisions about their care. Marissa is looking for women with bipolar disorder who are pregnant; have already had children, or are planning to have children & Partners of women with bipolar disorder who are pregnant; have already had children, or are planning to have children to form a lived experience advisory group. If you have a diagnosis of Bipolar Disorder and are currently pregnant, Marissa would be delighted to hear from you: CasanovaDiasM@cardiff.ac.uk

The impact of Postpartum Psychosis on the woman's relationship with her partner: couples’ and professionals’ perspectives.

Nicola Wass - Trainee Clinical Psychologist, Teeside University

Nicola is looking for women who have recovered from Postpartum Psychosis and their partners who are willing to talk about the impact this experience had on their relationship. Taking part in the study will involve attending a meeting with Nicola to discuss your experiences. You will have the opportunity to take part in individual and joint interviews. Participation will take between 30 minutes to an hour per interview, and can take place wherever is most convenient for you.

Status: recruiting October 2019, please read the Information Leaflet here. If you would like to take part, or have any questions, please email Nicola on: S6153815@live.tees.ac.uk

Research Study for Fathers of Women who have been admitted to an MBU

Claire Hargrave MSc Nursing - Kings College London & Bethlem MBU

A online questionnaire looking at partners experience when mothers are admitted to a Mother and Baby unit with their infant in England.

Status: closed. For information, email: claire.hargrave@kcl.ac.uk

A study of experiences and preferences for psychological treatment in women who experience Postpartum Psychosis

Rebecca Forde - Trainee Clinical Psychologist, University of Manchester

A qualitative interview study of psychological treatments as part of a treatment package for women who experience PP.

Status: closed. For information, email: rebecca.forde@postgrad.manchester.ac.uk