‘The left hand doesn’t know what the right is doing’: the barriers to UK maternal mental healthcare | Mental health

The bed was covered with baby clothes neatly arranged with milestone cards for future events such as “coming home” and “Easter”. They were the outfits for all the special occasions Tara Maguire thought she would miss with her daughter Maisie, then just two weeks old. Downstairs her husband and mother-in-law were waiting to drive her to be admitted as an inpatient at the Bluestone psychiatric unit of Craigavon Area hospital in Northern Ireland. “It was really hard,” recalls Tara, wiping away tears.

Tara had postpartum psychosis, one of the mental health conditions that affect 10-20% of mothers either during pregnancy or the year after – the “perinatal” period. They include depression, anxiety, obsessive compulsive disorder, post-traumatic stress disorder and psychosis. Many factors make women more vulnerable to mental illness during this period, from changes in hormone levels and the brain, physical and psychological stress and traumas during birth, the sheer magnitude of this life event, or a potential genetic vulnerability.

While treatment can be vital to limit the impact on the mother, her baby, her partner and other children, accessing it can be a postcode lottery. Hence there was cautious optimism in October when the Northern Irish Department of Health announced Belfast City hospital as the site of Northern Ireland’s first mother and baby unit (MBU). There are 19 MBUs in England where mothers can be admitted for mental health treatment with their newborns, two in Scotland and one in Wales.

“We know that the existence of MBUs are the first things that women want, they are the most important things for rapid recovery,” says Dr Jess Heron, a senior research fellow in perinatal psychiatry at the University of Birmingham, who set up Action on Postpartum Psychosis (APP), a national charity that campaigned for the new unit. However, she adds: “We need to know a timeframe; we need something to happen now.”

Postpartum psychosis is one of the more severe mental health conditions affecting one to two in every 1,000 who give birth. It can manifest as depression, mania, severe anxiety, confusion, catatonia, or a mixture of these symptoms, but it is the hallucinations, delusions and loss of touch with reality that define the condition. A diagnosis of bipolar disorder before pregnancy or among immediate family members is the strongest known risk factor, but as Heron explains, for half of the women who experience the condition, “The first episode comes out of the blue with no history at all.”

Tara had been “buzzing” in the days after her daughter’s birth, when she was readmitted to the hospital’s maternity unit for anaemia. Although she mellowed during visits from her husband, Chris – rare because of Covid restrictions – her complete lack of sleep and manic behaviour had her flagged for possible postpartum psychosis when she was discharged into the care of the perinatal mental health team that supports people within the community. No one in her family had any inkling of the suspected condition, and when the perinatal team left Chris an emergency contact number for psychiatric help he stuffed it in the pocket of the chair, thinking he would never need it. It wasn’t until Tara nudged Chris awake at night that he realised something was definitely wrong. “Is it time?” she had asked. “To smother the baby?” Tara’s head was filled with choirs of angels telling her Maisie was too good for this world, but knowing she could not bring herself to kill her baby she had thought she could enlist Chris. He reached straight for the emergency number.

For many women and their families in the UK, help is available. In 1997-1999, the then Confidential Enquiry into Maternal Deaths (CEMD) included suicides in its report for the first time. Although incomplete, the data, supplemented with figures from the Office for National Statistics, suggested suicide was the leading cause of death in the first year after pregnancy. This is still the case, though focus on maternal mental health has gradually increased over the subsequent two decades with the launch of initiatives such as APP and the Maternal Mental Health Alliance. Outside the UK, including many states in the US and Europe, maternal deaths from suicide are often still not counted.

“We’ve done loads of educating over the last couple of decades to improve the knowledge in the health professionals, primary care professionals, midwifery, health visiting, obstetrician, social care and mental health specialists,” says the consultant adult and perinatal psychiatrist and registrar of the Royal College of Psychiatrists, Dr Trudi Seneviratne. Specialist perinatal mental health teams now operate in every locality in the UK, compared with just 40% of localities in Scotland and just 15% in England 10 years ago.

When Heron set up APP in 2010, postpartum psychosis accounted for 43% of maternal suicides, yet fear, shame and stigma were preventing women from speaking out about inadequate support. More than a decade on, after work by charities such as APP, psychosis is now rarely a cause of death. In the 2023 APP peer support survey, 46% of respondents said: “I might not be alive if I had not found APP’s peer support services.” However, deaths because of other causes have increased.

The CEMD – now run by Mbrrace-UK (Mothers and Babies: Reducing Risk Through Audits and Confidential Enquiries), based at the National Perinatal Epidemiology Unit (NPEU) at the University of Oxford – released new figures for 2019-2021 last October, which state that of the more than 2 million women who gave birth, 572 died during or within a year of pregnancy. Of those deaths, 39% were caused by psychiatric conditions, including drug or alcohol abuse, and 19% were because of suicide, still the leading cause of death between six weeks and a year after pregnancy.

The government’s five-year suicide prevention strategy, announced last September, specifically targeted pregnant women and new mothers, noting that “the high risk compared with other causes of maternal death (most of which are rare) and the potential long-term consequences on children’s development mean we must take action to prevent suicides in this group”.

Chris still struggles, two and a half years later, to understand how Tara could have been discharged without anyone mentioning that the consultant suspected postpartum psychosis. Nor was it mentioned in their antenatal classes – they had never heard of it before. “We were completely blind,” Tara says. Although all the NHS workers involved “bent over backwards” to try to help, “the left hand just did not know what the right hand was doing”, says Chris.

This, according to Prof Marian Knight, the director of the NPEU, “is regularly identified as a challenge”. She adds: “Women who die by suicide have often contacted different bits of the health service in mental distress several times and nobody’s picked up the overall pattern of deteriorating mental health.”

Suicide or, in extremely rare incidents, infanticide are the worst-case scenarios, but other long-term impacts remain. “There are association studies between depression and anxiety and the child subsequently developing cognitive problems, behavioural problems, IQ deficiencies,” says Seneviratne, adding that the children themselves can go on to develop psychological problems.

A 2014 report put the net long-term cost of perinatal depression, anxiety and psychosis at £8.1bn for each one-year cohort of births in the UK; 72% of this related to adverse outcomes for the child. However, Seneviratne says the associations are complex. “We don’t want parents to feel guilty.”

When the economy suffers, people suffer more. Depression (often accompanied by anxiety) affects roughly 15% of mothers during or within a year of pregnancy, but among disadvantaged communities the proportion is significantly higher.

While people come to Dr Cerith Waters, an NHS perinatal clinical psychologist and researcher at the University of Cardiff, for therapy – which is happening more and more during the current cost of living crisis – he has found himself directing them to where they can access safe housing, baby clothes or a buggy. “Supporting people to get their social and basic needs met is increasingly an issue for our most vulnerable families before they’re ready for, and have the head space to engage in, psychological therapy,” he says.

Studies have also shown that people respond well to treatment during the perinatal period, which benefits the child as well. A 2020 analysis of 16 studies identified eight interventions that led to improvements for the infant and the infant-mother relationship, highlighting the apparent benefits of interventions that encourage positive interactions between mother and infant, for example, helping mothers to understand their infant’s perspective.

“It represents a wonderful opportunity to make a difference,” says Waters. Treatments can include talking and creative therapies, and improving diet, exercise and sleep. Medications such as antidepressants can also help, although the lack of clinical trials in pregnant or breastfeeding women makes it harder to balance the risks and benefits of medicines to mother and baby.

For Tara, medication was not enough. Feeling she was no longer safe at home, Chris had her admitted. Had Tara gone into an MBU with her newborn as soon as red flags of potential postpartum psychosis were noted, much subsequent trauma might have been avoided, she suggests. These units admit the mother and baby together so that the mother has access to the psychiatric and psychological treatment she needs alongside postnatal physical care, with nurses on hand to care for the baby and support bonding and parenting behaviour. Being among other mothers of newborn babies in an MBU can also be a support.

As it was, Tara was admitted into a general psychiatric unit. “It looked like a prison cell with a hospital bed,” says Chris.

Heron says: “Being forcibly separated from your newborn can be terrifying, especially when mentally unwell, and this can impede treatment and recovery.”

Despite improvements in recent years, many still fear the reaction of friends, families and even social services if they make their experience of postpartum psychosis or other mental illnesses known. This poses a barrier not just to public awareness but also access to support and treatment. “You’re only going to get better if you’re properly treated,” says Knight. “That means speaking up.”

One of the striking characteristics of postpartum psychosis is how well people do recover. Speaking to Tara now, there is little trace of the severe condition she experienced. But, she says: “What I’m worried about is that mummies take their own lives to protect their kids because they’re terrified of their own minds.”