Mumsnet have today published the results of a survey into patients’ care and experiences following miscarriage. Around a quarter of a million women miscarry in the UK each year† – about one in five pregnancies ends in miscarriage – but the statistics published today show that the treatment and support women receive fails to meet their needs or measure up to official national guidelines.
In a survey of over 1000 women‡, it was found that:
1. Half (46%) had to wait over 24 hours for a scan to determine if their baby was still alive, with one in five (18%) waiting longer than three days. “When I was asked how much longer it would be, I was told I was taking up their time.” A Mumsnet User
2. Half (47%) were treated alongside women with ongoing pregnancies. “I sat with other ladies who were still pregnant and waiting for scans… seeing their happy faces tore me apart.” A Mumsnet user
3. A third (31%) of those who miscarried at home following a scan were not offered any pain relief, or adequate pain relief. “I was under the impression that miscarrying at home was the easy option. It certainly is not easy. I have been in agony.” A Mumsnet user.
4. 58% of respondents wanted counselling, but only 12% were offered it. “I had to wait six months to get counselling and lost six months of my life as I was not coping with the loss.” A Mumsnet user.
5. 56% of respondents wanted further medical care but only 26% were offered it. “The hospital said they’d ask a health visitor to contact me. That was two months ago; nobody has been in touch.” A Mumsnet user
6. Only a quarter (23%) spoke of their experience to friends, and only 13% told wider family. “When I felt ready to talk, I didn’t have anyone ready to listen.” A Mumsnet user
In 2012, NICE guidance on the management of miscarriage stated that miscarrying at home (known as ‘expectant management’) would be the default clinical response for women undergoing miscarriage before the 13th week of pregnancy, but today’s results show this policy is leaving women without the support they need.
◾Only 15% of women who miscarried at home following a scan felt they had the right support, information and pain relief to manage. “I was told, over the phone, to ‘just sit on the toilet and hopefully it will all come out’.
◾11 people were asked to store their foetus at home prior to further tests on the embryo. “[I don’t want to] catch my miscarried embryo in a urine sample pot at home, keep it in the fridge overnight if necessary, then take it on the train (two hours) for genetic testing.”
Mumsnet users have developed a five-point Miscarriage Code of Care, which calls for straightforward improvements in the treatment parents receive:
1. Supportive Staff
GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication techniques (including things NOT to say to women who are miscarrying), basic counselling skills and the psychological effects of miscarriage. Follow up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage.
2. Access to Scanning
Access to scanning facilities in the case of suspected miscarriage should be easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week, and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units at all times as standard. Those who are miscarrying naturally at home should have the option of a scan to check that there are no on-going complications.
3. Safe and appropriate places for treatment
Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. EPAUs should be sited in hospitals gynaecology, rather than antenatal, departments or next to A&E departments, to ease women’s referral route. Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in an antenatal or labour ward.
4. Good information and Effective Treatment
All women experiencing miscarriage should receive clear and honest information, sympathetically delivered. Women should be given information about all the available management options – expectant, medical and surgical – and should be able, clinical considerations allowing, to choose the method of management that best suits their circumstances. Women miscarrying at home should be offered appropriate prescription pain relief. In the case of miscarriage continuing in hospital, doctors should discuss with the parents what they wish to happen to the foetus, (i.e. it should not be disposed of routinely without prior consultation).
5. Joined up care
Community midwife teams and GPs should be informed immediately when miscarriage has occurred, and subsequent bookings and scans cancelled, to avoid women who have miscarried being chased by HCPs for ‘missing’ pregnancy appointments.
Many of the Code’s points are included in best practice guidance fro the Royal College of Obstetricians and Gynecologists and the Department of Health, but the research shows that, too often, this guidance is not being implemented.
Mumsnet is now asking the Secretary of State for Health, the shadow Health Minister and the junior Health Minister to commit to improving miscarriage care during the life time of the next parliament.
Justine Roberts, Mumsnet founder, said:
There’s no escaping the pain of a miscarriage, but for this to be compounded by lack of treatment, pain relief, good care or just plain human kindness is completely unacceptable. We are calling on the three main parties to include a pledge in their manifestos to improve miscarriage care, based on the principles in our code.
Jane Brewin, Chief Executive of Tommy’s said:
Losing a baby is a devastating experience and our helpline hears from people every day who are struggling to make sense of what has happened to them and why. More research is needed to help us understand the causes of miscarriage so we can develop treatments that help save babies’ lives. We want families to know that they are not alone and that Tommy’s helpline is here to support anyone who has been through this heartbreak.
Susan Seenan, Chief Executive of the national charity Infertility Network UK, said:
Miscarriage is an extremely distressing, and often frightening experience and sadly even health professionals can underestimate the impact which a miscarriage can have. Good support and access to counselling from sensitive trained staff who understand the emotional as well as the physical effect of miscarriage on both women and their partners can make an enormous difference to those dealing with the grief of losing a baby. We hope that this campaign will lead to better care and support for everyone affected by what can be a hugely traumatic experience.
More information on the Campaign
You can find more information on the Mumsnet site.
How to get involved
Please ask the three politicians who can make this happen – Jeremy Hunt (@Jeremy_Hunt, Andy Burnham (@andyburnhammp) and Norman Lamb (@normanlamb) – for their support.
If you don’t use twitter, please send an email to the politicians who can make this happen:
- Secretary of State for Health Jeremy Hunt – firstname.lastname@example.org
- Labour Shadow Health Spokesman Andy Burnham – email@example.com
- LibDem Health Minister Norman Lamb – firstname.lastname@example.org
We need to ask them to include a promise in their next manifesto to make miscarriage care better. Accounts of personal experiences are particularly effective for explaining why we need their support.
Share this on your Facebook page, and tweet about the campaign with hashtag #miscarriagecare
†Source, Miscarriage Association
‡ 1065 women who had miscarried since September 2011 completed the survey between 24 April – 15 May 2014