One in four pregnancies ends in miscarriage. You'd think, then, that the health system would cope seamlessly with miscarrying women. Yet throughout the UK, grim stories abound of insensitive hospital staff, inadequate facilities, confusion, panic and grief.
Shocked by the sheer volume of posts on this topic on the parenting web forum Mumsnet, its founders are calling for a new miscarriage code of practice. They argue that simple changes such as better communication and information systems, shorter waiting times, improved access to scanning facilities and better staff training in the psychological effects of miscarriage, would make a massive difference to the trauma that miscarrying women feel.
Last week, one of Mumsnet's co-founders, Justine Roberts, met with representatives from the government, the NHS and voluntary organisations to discuss the proposals. Many of the campaign's points are already in the current NHS guidelines but need to be better implemented – and the government has at least now given a firm commitment to change. According to its chief nursing officer, Christine Beasley: "We are going to help local NHS organisations across the country to understand and improve the quality of their services, and to make decisions about the services they provide in future."
Gail Johnson, a Royal College of Midwives midwife, agrees that "women don't realise how common miscarriage is." But this is scant comfort for parents. "It may be common," says Zoe, 40, who had three miscarriages before having her son, Alfie, "but it's not common for you."
Most miscarriages occur in the first 12 weeks of pregnancy (those that occur after 24 weeks are classified as stillbirths), and the way the current system is organised almost beggars belief. Most Early Pregnancy Units (EPUs), where miscarrying women are seen, are closed at weekends, and women talk of agonising waits for scans to confirm whether a pregnancy has indeed ended.
"Inconveniently, I began to bleed on a Saturday," says Sarah, 39, who has miscarried three times since having her daughter, now four. "So no one could tell me whether my baby had died. The young locum who examined me just said, 'Well, you'll probably lose it anyway if you haven't already,' and sent me home." If EPUs were open seven days a week, or there were portable ultrasound facilities and trained medical staff available in A&E and gynaecological units, such needless trauma could be avoided.
Women who may be, or are, miscarrying are often installed in antenatal wards, labour wards or even wards with women waiting to terminate unwanted pregnancies. After miscarrying for the third time, Sarah needed an operation known as an Evacuation of Retained Products of Conception (even the terminology is hard for parents to stomach). "When I woke up from the anaesthesia," she recalls, "the first thing I heard was a wailing baby. A passing nurse said to me, 'Stop crying, there's no need for that.'"
Sarah then had to recuperate among "pregnant women who were in for things like gallstones, all rubbing their big bellies, talking about their babies and making plans". Siting EPUs in hospital gynaecology departments, rather than antenatal or A&E departments, would go a long way to minimising this sort of agony.
It is not, perhaps, surprising that GPs, EPU staff or A&E staff are matter- of-fact about miscarriage – they see it all the time. But even so, the insensitivity can be staggering. "The doctor who performed my operation didn't read my notes properly," says Sarah. "I was on the operating table and he glanced at my file and said, 'Oh, your baby's still alive?' Well, it had been alive – a week previously."
"The staff tend to be cold and dismissive," agrees Lisa, 32. "After my fifth miscarriage, one consultant suggested I take a holiday."
To make matters worse, since there is no centralised information system, women such as Lisa often get automated reminders of antenatal appointments and scans weeks after they have lost the baby. Instead, the proposed new code of practice calls for information on pregnancy and miscarriage to be held centrally, so that antenatal appointments are automatically cancelled after a miscarriage.
Many couples complain of a terrifying lack of information. If a miscarriage is confirmed, women usually have three options: a "natural" miscarriage, which can involve bleeding for up to two weeks (sometimes tissue from the pregnancy is left behind and can cause infection); medication, to speed up this natural process; or surgery. But parents often say they were given virtually no information, let alone choices.
"The doctor said it would be like a heavy period and sent me home," says Sally-Ann, 37. "Total rubbish. It was like something from a horror movie, blood gushing. My husband was scared, I was panicking: we were both just crying and crying."
Such experiences can leave deep emotional scars for both parents. Sarah's husband refuses to try for another child now: "He says he just can't watch me go through it again," she says. "It's put a huge strain on our marriage. I've resigned myself to having an only child, but I know that if we'd had more support or understanding, he wouldn't feel this way."
The campaigners say that more training for healthcare workers on the psychological impact of miscarriage is vital. As Lisa puts it: "It's not just a foetus you've lost: it's holding, feeding, burping your baby for the first time. It's taking your child to school. It's your future – and it's gone."
• The Miscarriage Association: miscarriageassociation.org.uk
• Babies: the Mumsnet Guide is published by Bloomsbury, price £12.99. To order a copy for £11.99 including free UK mainland p&p, go to theguardian.com/bookshop or call 0330 333 68467.
