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  • 16Jun

    What to Expect When You’re No Longer Expecting (Miscarriage)

    Content Note: This posts discusses miscarriage.

     

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    The first rule of Miscarriage Club is you don’t talk about Miscarriage Club.

    Perhaps it would have been more bearable if my doctor looked like Brad Pitt, smoldering and sweaty, but I doubt it. Or maybe it would have been easier to handle if I’d known there was a Club in the first place, but I didn’t. Certainly it would have been a different experience if there was a high quality standard of care. But there wasn’t.

    Tricky post, but here goes… Something isn’t right with the way they currently handle miscarriage in the NHS.

    With my own experience I put it down to a bad shift at the hospital, poor information from my GP and midwife. I explained it all away, apologised for them. Since talking about miscarriage in public is about as socially acceptable as taking a crap in the frozen food aisle, I assumed it was a one-off colossal cock-up in the care I received. Turns out I was just colossally mistaken.

    Parenting site Mumsnet have released new research today with some statistics which should have us setting fire to our purple maternity folders. It includes women asked to store their foetus at home, tens of thousands sent home alone without information or pain relief and more.  Of the quarter of a million women who miscarry each year, only 23% spoke about their experience with friends. Of women treated in hospital, half were put alongside women with ongoing pregnancies (which is hard for both). For those sent home to miscarry, only 15% felt they had the right information, support and importantly, pain relief.

    I was part of the statistics in 2006. Sent home from a twelve week dating scan with an apology in lieu of a grainy ultrasound image. It hadn’t worked, and there was a four day wait for surgery. It’s very common, they said. Go home and wait. Take ibuprofen. I certainly didn’t expect contractions, or complications because I had literally no information at all. It was the first and last time I’ve ever passed out through pain and by that point I was already in an ambulance. A&E ditched me at four hours (government targets – they nailed it!) and I miscarried in an office on a full hospital ward, still accompanied by the paramedics who refused point blank to walk away from a patient who was in agony with no access to the pain relief  needed. The nurses apologised as they scrambled to call a doctor and grab at whatever equipment they could find. The next day I was discharged in a state of utter numbness and shock. “Terribly sorry, it’s awfully common and not nice, but part of life”. And apparently not that unusual an experience. There are so, so many stories once you pass the thorny tumbleweed and bring the subject up.

    But having put that aside for many years, reading the research published today made me blow smoke out of my rapidly flaring nostrils.  I still count myself as more fortunate than many.  I ultimately got some pain relief. I didn’t do the whole thing at home alone. Others have a tougher time. I think of the many teenagers who must go through the same; alone, scared, already stressed to high heaven at being pregnant. I speak good English unlike the many women in the UK who don’t (a group who by nature probably weren’t well represented in the research) so at least I understood what little I was told. I had a supportive partner and access to paid sick leave and it wasn’t coupled with other health problems. It didn’t happen repeatedly. The list goes on.

    The research shows that 58% of women want counselling after a miscarriage, yet only 12% are offered it. Miscarriage can bring a surprisingly potent cocktail of trauma, bereavement, guilt and other fun party pieces; yet again, because it has taboo stamped all over it in red bloodied ink, we don’t seem to have grasped that many women need and want better support.

    Mumsnet are campaigning for improvements with a draft ‘Code of Care’. They don’t sound revolutionary, nor are they suggesting that miscarriage can be cured. They simply recognise that the health service can and should do better by many women. They have five recommendations and are asking all the main political parties to commit including them in their manifestos for next year (See below and the link).

    I’m totally behind this. A quarter of a million women a year is too big a club to continue to keep quiet. Women should be able to expect an appropriate and consistent standard of care when they are no longer expecting.  Find out how you can support the campaign by clicking here.

    And if you too have been through this, I’m sorry.

    JT

     

     

     

    The campaign points are:

    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.
     “A receptionist greeted me with the phrase ‘you again’ when I was in hospital for my fifth miscarriage.”

     

    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 ongoing complications.

    “It was a real battle to get a scan. I kept on being told to wait and see, or that my bleeding wasn’t heavy enough.”

     

    Appropriate Treatment Spaces

    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 antenatal or labour ward.
    “I was put on the labour suite to wait [for the surgery to remove the remains of the baby]. I could hear women giving birth.”

     

    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 occurring 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).

    “I had been under the impression that miscarrying at home would be the easy option; I was given no information whatsoever. I was in agony.”
    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.

    “The hospital said they’d ask a health visitor to contact me. That was two months ago; nobody has been in touch.”

     

     

    Frtee Image Courtesy of 123rf.com

Discussion 7 Responses

  1. June 16, 2014 at 11:30 am

    I am so sorry that you had such a dreadful experience x

    • June 16, 2014 at 7:08 pm

      Thank you. I am fine now, but very glad Mumsnet are taking it on x

  2. June 16, 2014 at 1:38 pm

    My miscarriage was 36 years ago (something one never forgets) and the care and information I received then was virtually non-existent. It’s truly shocking that all this time later so little has been done to improve the care and support. And, like JT, I also am sorry if you have been through this too.

    • June 16, 2014 at 7:09 pm

      It is an abysmal pace of change.

  3. June 16, 2014 at 1:58 pm

    Thank you for doing this blog post, it does need to be brought to people’s attention. I’m so glad to see mumsnets getting behind this too. I remember at the beginning if the year posting a response about my experiences on one of the pages about loss that I follow (it was Saying Goodbye or Little Miss Betty I think) that was the base for the research they are quoting.
    I have had both good and bad care with my losses and believe there needs to be some guidelines on how to care for women suffering a lost. And also believe we need to break down the taboo – Can you tell I don’t subscribe to the first rule of the ‘club’!

    • June 16, 2014 at 7:10 pm

      And I’m glad you don’t Lisa! I love your openness about it all x

  4. June 22, 2014 at 1:41 pm

    Thank you for such a heartfelt post. Sorry to hear that you had such an awful experience. Let’s break the taboo.

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