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

Dr Jess Heron interviews Iain Cunningham about his experience of making the film 'Irene's Ghost'

Why did you decide to make the film, Irene’s Ghost?

It was only really when I had my daughter Isla that I started to properly question what went on and to try and reconcile things. I watched her grow and develop and it was amazing to me how fully rounded a very small child can be. I started to think about myself at that age, and what I had experienced. I started to see the world through the eyes of a 2 or 3 year old. I imagined disappearing out of Isla’s life without a trace and it was completely heart breaking. I also started to wonder what the connection might be between Irene and my own experiences, my own mental ill health a couple of years before. I started to feel it was my responsibility to Irene to find her in the way that I could. So that’s what I set out to do.

The most moving scenes in the film involve your father. Given the era’s stigma and lack of information- which were so beautifully conveyed in the film, what impact has the film has had on him?

I always respected the fact that my Dad didn’t want to talk about things, but when I started to find out things about Irene, I felt like I’d been propelled out of a cannon, that’s how compelled I was to do it. I was incredibly nervous about talking to him for the first time, I had to build myself up to do it. It felt like he’d held a lot of emotion inside him for a long time. As the search progressed, we started to understand each other more and more. I think somehow we met in the middle. I started to understand what he had been through, the pain and confusion, and the despair really. I think since making the film, and with a bit of time to digest the experience, our relationship has improved a lot. We can talk more openly than before, and I think we take the time to look after each other a bit more as well. He’s very keen now to try and help men in a similar situation to the place he found himself in, and might even train as a peer supporter for APP.

The film flits between real people and dreamlike animations. Why did you use this device?

I had always thought animation could be a way to help visualise the imaginative world I had as a child, and my slightly unreal or magical memories of my Mother. I had an illustrated baby book, and the palette came from that, those muted 70s tones. Mixing reality and animation hints at the way we construct stories from memories - our memories are not entirely truthful, and that felt like a nice visual metaphor. There’s also a naivety to the style which again echoes the world of a child

You demonstrate in the film that there is pleasure to be gained from open discussions with children about life’s difficult issues. Was it difficult to face the family ‘skeletons’ head on, in order to be able to do this?

When I started out, I realised that it would be important to my daughter to know her Grandmother as much as it was for me to know my Mother. Partly because of my own experiences as a child, I wanted to be as honest as I could with Isla about what I was doing and why. It’s been an incredibly valuable experience to go through together and has enabled us to talk about grief, mental health and well being, relationships and lots of other very important stuff that would have perhaps been more difficult without this real life adventure unfolding around us. People were very generous with me because they could sense how important it was to me, and I’m grateful for that.

What was your experience of meeting women and families through “Action on Postpartum Psychosis”? Did it help you or your family personally?

I vividly remember the first time I met with women from APP and started to realise that this illness could explain the things I had been hearing about from people. Developing relationships with some of those women has been one of the most rewarding and incredible parts of this process. I was able to understand the illness first hand, and felt a kinship with them somehow. They were very welcoming. Hearing about the bond they felt with their children, even in the grip of illness was very important to me personally. Meeting their partners helped me to understand more about my Dad’s position. Also, introducing Isla to the families that meet through APP helped me to talk to her about it all in a way she could understand.

Like many, you hadn’t heard of Postpartum Psychosis before making this film. Has finding out about PP helped or has it increased your sadness or anger at the loss of your mother?

I was very ignorant about mental health in general I think, before making the film, even though I probably felt I was quite clued up. I was incredibly ignorant about the postpartum period in particular, and yes, I hadn’t heard of PP. It’s quite complex how I feel about her PP, tied as it is to an era when treatment wasn’t as good as it is now and awareness was very low. I think people working in psychiatric care have a very tough job to do, and they probably did their best with the tools they had available to them. I wish there had been a different outcome, but it’s impossible to know if there were issues with her treatment beyond the large doses of drugs mentioned in her notes, which were commonplace at the time, but we now know can be harmful. I was angry that her illness seemed to have made it more difficult for people to talk about her after she was gone. Hopefully that stigma is changing.

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

I think more knowledge about PP in the wider community in future will mean that it will be picked up earlier and treatment given earlier. I think also that the broader understanding we have about mental health seems to be growing, so hopefully that will continue. I hope families can feel supported as a whole - partners and children too - and that there are the proper facilities, including more MBUs, so that the right care can be given to everyone regardless of where they live.

Has the making of the film and its wonderful reception helped you personally? Do you see its success as honouring your mother?

It does make me feel a sense of pride that I am able to share her story with people, and I will be able to share it with more people if the film has a good reception. In extreme cases, mental illness can rob someone of their life, and even of the way they are remembered. I hope that I’m changing the balance for my Mother a bit. I want people to hear about her, ordinary and extraordinary in her own way, as we all are.

What’s next for you and for the film?

I’m working hard with the team to get the film out to UK cinema audiences from 3rdrd May 2019. Please like, and share on Facebook or Twitter.

We want to talk to people at screenings and give them more info about PP, and a space to share their experiences about mental health, supported by APP.

I want to make a tool to help families who want to start a difficult conversation about mental health, by creating a 360 degree video, which is a media I work in outside of this film. The film will show the way other families talk, with natural conversations between parents and children about PP and other issues around mental health.

After that, I’m keen to do something different, and have been developing some fiction projects, but I’m still drawn to stories which relate in some way to mental health and identity. I’m sure Irene’s Ghost will keep me busy for a while yet though!

'Irene's Ghost' screenings:

LONDON PREVIEW | Bertha DocHouse | 30/04/2019 | Buy Tickets
LONDON | Bertha DocHouse | 03 & 04/05/2019 | Tickets Available Soon
GLASGOW | Glasgow Film Theatre | 04/05/2019 | Tickets Available Soon
NEWCASTLE | Tyneside Cinema | 04/05/2019 | Buy Tickets
LONDON | Bertha DocHouse | 05 to 09/05/2019 | Tickets Available Soon
MANCHESTER | HOME | 10/05/2019 | Tickets Available Soon
BELFAST | Strand Arts Centre | 15/05/2019 | Tickets Available Soon
BIRMINGHAM | Midlands Arts Centre | 16/05/2019 | Buy Tickets
EDINBURGH | Filmhouse | 19/05/2019 | Tickets Available Soon
LONDON | Curzon Soho | 20/05/2019 | Tickets Available Soon
NUNEATON | Abbey Theatre | 29/05/2019 | Tickets Available Soon
HALIFAX | Square Chapel | 25/06/2019 | Buy Tickets

For more information, visit irenesghost.com

If you have experienced PP and are interested in helping Iain film discussions about mental health between parents and children, please get in touch: app@www.app-network.org

On the 9th April, Dr Jess Heron, APP Director and Dr Sally Wilson, APP Training Coordinator, presented at the Midlands Maternity and Midwifery Festival at Leicester football club. They spoke to a packed conference hall of midwives, including student midwives about an evaluation of the 1-day workforce training that APP offer.

This series of conferences run across the UK and are a great platform for raising awareness of postpartum psychosis amongst midwives and other health professionals, which is one of APP's aims for 2019.

APP want to help health professionals to recognise early signs and symptoms, promote the importance of timely treatment, and talk about recovery and support needs for women and their families affected by postpartum psychosis. We are campaigning this year for compulsory training in perinatal mental health, including Postpartum Psychosis for midwives.

Training in Postpartum Psychosis: Evaluation & Lessons - Dr Jessica Heron and Dr Sally Wilson from Narrowcast Media Group on Vimeo.

Can you help us? Future Midwife standards consultation

The Nursing & Midwifery Council have recently announced a consultation on the 'Future Midwife: Standards of Proficiency for Midwives'. We are delighted that Postpartum Psychosis has been specifically included as a core learning topic for midwives. We would like to make sure it stays included as these standards are refined and consulted upon. If you have experienced PP and would like to make comments, or are a midwife and would like to state how important it is that Postpartum Psychosis is in core midwife standards.

Please respond to the consultation by the 9th May 2019 via here or, please get in touch with Sally if you would like to give any feedback for APP's response. If you have have comments, quotes and stories that you could share with us about your midwifery care, these are really useful in helping to campaign.

APP will be responding to make sure postpartum psychosis and training in PP for midwives remains a focus in these standards.