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Monday, 16 June 2014

Miscarriage Care Campaign


Half of women who miscarry wait 24 hours or more for a scan,
and are treated alongside women with healthy pregnancies

Mumsnet calls for manifesto commitment on better miscarriage care

Mumsnet, the UK’s biggest website for parents, is today publishing the results of a survey into patients’ care and experiences following miscarriage. Around a quarter of a million women miscarry in the UK each year1 – 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.

A survey of over one thousand women2 shows:

  • 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 asked how much longer it would be, I was told I was taking up their time.” A Mumsnet user

  • 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

  • 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

  • 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

  • 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

  • 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
2. Access to scanning
3. Safe and appropriate places for treatment
4. Good information and effective treatment
5.   Joined-up care
Many of the Code’s points are included in best-practice guidance from 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 lifetime 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.”

Cathy Warwick, Chief Executive of the Royal College of Midwives, said:

“The Royal College of Midwives welcomes and supports the Mumsnet code of care which aims to improve care for women at a very difficult time. Midwives and other health professionals have an important role to play in supporting women and families through the physical and psychological impact of miscarriage. Kind, compassionate and empathetic communication around care and treatment is an essential step to support families. It is particularly important that there is effective communication between the hospital, GP and midwife to provide ongoing support or advice, as needed.”

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.”

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