Nobody told me

In recent years the conversation surrounding topics like mental health, body image and self-care has radically opened up. There is growing recognition, too, of the challenges of pregnancy, birth and motherhood. No one ever claimed having a baby was easy, but the reality can come as a shock to even the most prepared parents.

Nevertheless, there is still little awareness of postpartum psychosis (PP) – the severest form of postnatal illness, which affects around 1,400 women every year in the UK. It is not hugely common but this mental health problem is often dramatic and frightening. It can be triggered by hormonal changes, lack of sleep, and genes can play a part too. Symptoms include a racing brain, restlessness, insomnia, mania, delusion and hallucinations. Sufferers experiencing delusions can believe their thoughts are being read or that they have special insights or unique powers. In most cases, it comes on rapidly in the days following childbirth.

Jade, from Blackpool, was hospitalised with PP in 2020. “I believed that if I went to sleep I would die, so my body kept telling me to stay awake.

“I didn’t sleep for four days. I felt agitated and anxious and wanted to run away. I saw visions of heaven and hell and refused to see my family, even though we’re very close.”

Gillian, from Merseyside, recalls thinking her diagnosis had been made up for her benefit. “I believed I was the first person to be diagnosed with this condition. It was a very long time before I realised I was actually in hospital – I thought I was in a woman’s refuge centre. I remember breaking down in tears when my dad came to see me and suggesting we went to a cafe across the street but I was told I couldn’t leave the building. I didn’t really understand why my freedom had been restricted.”

You don’t necessarily have to have experienced a mental health problem for PP to affect you – any new mum can become ill with it. Recognising and understanding PP can be very difficult. Adjusting to life postpartum is challenging enough, and the hormonal dump of baby blues, sleep deprivation brought on by night feeds and colic, and anxiety that you aren’t doing motherhood “right” can lead both patients and doctors to file PP under the trials and tribulations of new motherhood, or a temporary side-effect of childbirth drugs.

PP is not currently included in training for primary care consultants, so diagnosis also gets lost in the murky waters of the more common postnatal depression, which affects one in 10 mothers, leading to dangerous misdiagnosis. Treatment for PP usually involves antipsychotic and mood-stabilising medication, but antidepressants often exacerbate it.

Karen, from Manchester, was misdiagnosed in 1985. “Even less was known about PP back then. I found it frustrating and upsetting that I was labelled as having severe postnatal depression,” she said.

It can be a vicious cycle. While the stigma about discussing mental health is lifting, mothers going through it are often afraid to open up and get help for fear of having their babies taken away. PP is categorised as a life-threatening medical emergency and same-day admission is recommended – but general psychiatric wards don’t allow mothers to bring their babies with them, and the distress of separation can exacerbate symptoms

There have even been instances where women have lost custody of their children to their estranged partners while in hospital. There are mother and baby units (MBUs) where mothers receive both specialist psychiatric treatment and postnatal care, however. These quiet, family-oriented facilities allow mothers to bond with their babies while multidisciplinary professionals prescribe specialist perinatal medication, assist with baby care, and help women and families recover from the trauma of experiencing a severe mental illness at such a unique time. But only 22 MBUs currently exist in the UK. There are only two in Scotland, one in Wales and none in Northern Ireland.

Action on Postpartum Psychosis (APP) is a charity that supports families going through PP, lobbies for the training of health professionals on the condition, facilitates research and campaigns for more MBUs. It believes awareness is key.

Dr Jess Heron, a senior research fellow in perinatal psychiatry at Birmingham University and CEO of APP, says: “It’s so important that all frontline health professionals are trained to identify symptoms, know how to obtain appropriate care, and how to manage women and families with compassion.

“The biggest issue is managing treatment delays, and poor pathways to care… A longer time with PP means there’s more to recover from – more risk to mother and infant safety, potentially more damage to relationships, and more time lost with a new baby.”

This was the case for Gillian. “I was very quiet and withdrawn with my GP which made it difficult for them to work out what was going on. I was very afraid that something bad was about to happen… I didn’t say much. If I’d voiced my thoughts more, they might have realised what was going on sooner.”

The shortage of MBUs means women suffering from PP are often faced with the choice of being admitted to a general psychiatric ward close to home or travelling hundreds of miles to receive the necessary care MBUs provide, which can mean they are left without familial support close by. “Good support to partners and families is vital, so that they can understand the illness and reduce the long-term impact,” says Heron.

Jade was admitted to Ribblemere MBU and had support from her husband and mum.

“If it wasn’t for the mother and baby unit, I don’t think I would have recovered as quickly as I did,” she says. “They definitely helped get the bond back between me and my baby. Once I was discharged, I went to live with my mum for a bit to help me gain confidence, as my husband works away. They were both a big support to me.”

Peer support is as vital to many women recovering from PP as support from family and medical professionals, giving them a chance to talk about their experiences as an aid to recovery. APP has peer support workers in communities across the country, in MBUs and in the form of café groups and online forums.

“There is much more to recovery than medication,” says Heron. “Women need support to recover from trauma, develop parenting skills, come to terms with the experience, and rebuild their lives. [Peer support] helps to reduce the feelings of guilt, shame and isolation that frequently follow the illness.”

Gillian says: “Meeting other mothers with the same condition helped me realise that I wasn’t alone.

“I had never heard of PP before my diagnosis and the same is true of practically every woman I’ve spoken to since.

“I can’t help but feel that this lack of awareness is part of the problem and that it would be easier to diagnose and get professional treatment quicker if more people knew of this rare condition. I’m always pleased to hear of books, TV programmes and plays that seek to share stories on this issue.”

Awareness about outcomes could also encourage people to seek help. With the right support, PP can be carefully managed and successfully treated.

“Clinically, outcomes following PP are very good. Women do have a risk of another episode after future pregnancies, but plans can be put in place to reduce the likelihood and severity,” says Heron.

Karen says she “never had another episode or suffered with any form of depression” and Gillian went on to study a master’s degree in psychology, do a TEDx talk on PP and write a children’s book about the illness, to help families talk to their children about it.

“I now help bereaved families preserve memories with art and storytelling,” says Gillian.

“It’s not always easy. I still need to be careful about getting enough sleep and not getting too stressed. It’s so important to ask for help if you think you may be suffering with PP.”

If you or anyone you know is showing symptoms of postpartum psychosis, make an emergency doctor’s appointment or dial 111 immediately. If you think there is imminent danger, call 999 and ask for an ambulance. For more information on PP, visit app-network.org