A campaign has been launched to improve the care given to the thousands of vulnerable women who do not get the support and understanding they need from the NHS when they suffer a miscarriage.
Some women, says the website Mumsnet – which is launching the campaign with the backing of doctors and other experts – have to wait several desperate days for the scan that will confirm their baby is dead, while many others are unthinkingly treated in hospital in the same wards and rooms as women who are pregnant or have new babies.
Mumsnet says the many accounts of miscarriage related by its members show that this is a neglected and even taboo issue. Around a quarter of all pregnant women suffer a miscarriage, yet healthcare staff sometimes appear not to understand the devastation they are suffering.
"During my second miscarriage, a locum GP said: 'Well the baby's dead, so what do you want me to do?' Most horrible thing that has ever been said to me by anyone," posted one member on Mumsnet.
A survey of nearly 1,400 women by the website found that nearly two-thirds (63%) who miscarried at home following a hospital scan did not have enough pain relief. Nearly half (48%) were treated in hospital alongside pregnant women or women with newborn babies, causing them unnecessary extra distress.
More than a fifth (21%) had to wait three days or more for a scan to confirm what had happened, and more than a third (35%) who needed a surgical procedure after miscarriage had to wait four days or more.
Mumsnet is campaigning for a five-point code of practice to improve the care women get at this time. "There is no getting away from the hurt of miscarriage, but there are a number of simple changes that could make a considerable difference to the level of trauma miscarrying parents undergo," said Justine Roberts, co-founder of Mumsnet. "We're asking national and local politicians and health care providers to get behind our code of care to improve the treatment received by women who miscarry."
The campaign's five demands are:
• Better training for healthcare staff to help them be more supportive.
• Faster access to scanning.
• Safe and appropriate places for treatment.
• Good information.
• Joined-up care.
The initiative was welcomed by a number of experts. "Miscarriage is extremely distressing for any woman," said Professor Tom Bourne, consultant gynaecologist at Queen Charlotte's and Chelsea hospital, London. "Many of the issues raised by the Mumsnet miscarriage code of care are fundamental.
"Women with a possible miscarriage should never have to wait in an ante-natal environment and, once a miscarriage has been confirmed, there must be communication between professionals to prevent the upset caused by being chased for further appointments or nuchal scans.
"Women should be offered different treatment options and, for non-surgical approaches, they also must be given realistic information about what is involved, and have adequate analgesia and access to care should they run into problems."
Dr Melanie Davies, consultant obstetrician and gynaecologist at University College Hospital, London, also supported the code of care. "Miscarriage can be a devastating time for parents, but there are things that could be done to make it easier."
Carrie Longton, co-founder of Mumsnet, who has had miscarriages, said there had been a great deal of discussion of the issue on the site. When it happened to her, she said, the NHS was obsessed – in a good way – with giving patients choice, but she was not in a position to understand the implications of what she was choosing.
"They said you can have a D&C [dilation and curettage, a surgical procedure] or miscarry naturally. Natural sounds better, but what they don't explain, or you can't take in, is how much it is going to hurt. And at some point you are going to have to flush your baby down the toilet. To you it is a baby. It was going to grow up and go to school. You are passing these clots of blood and somewhere in there is your baby and you are going to have to flush the toilet."
Healthcare staff were all caring people, she said, but they were over-stretched and were not always as sympathetic or helpful as they might be. Perhaps miscarriage needs generally to be talked about more, she said. Many women do not reveal they are pregnant for many weeks for fear of miscarrying – but when they do lose their baby, nobody will support them because they did not know they were expecting.
• This article was amended on 10 October 2011. The original referred to a DNC when the intended reference was to a D&C, dilation and curettage. This has been corrected.
