And I am one of the luckier ones

I can’t write about this.

How can I not write about this?

Mumsnet, who I normally have absolutely nothing to do with, not being a mother, and not being overly keen on their ‘as a mother‘ attitude to holier-than-thou media intervention (sorry, Mumsnet, but it’s true), have started a campaign I can actually, unequivocally, say I am 100% behind. A campaign for better miscarriage care in Britain.

I saw the link on Katyboo’s blog. She wrote a deeply moving post about her own experiences (which are devastating. OK, yes, it’s not a competion, but HOLY HELL, lady). My eyes kept filling with tears.

I then found the news reports on the campain on the BBC, and on the Guardian website (aside – the first few commentators on the Guardian website had to point out that illustrating this story with pregnant bellies was, well, all kinds of fucked up, actually. It’s now safely a picture of a nurse holding a stethoscope. Why not a picture of a woman howling like a banshee, half-collapsed in her partner’s arms on the floor of an A&E examining room, I should like to know? What happened to truthfulness in reporting?).

Like Katyboo, I want to address why the five points of Mumsnet’s Miscarriage Code of Care are so hugely important. I just beg you not to make me read back through my blog to provide links to these events as they were happening. I’m really not able to re-read all that right now. No.

  1. Supportive staff
 – During my first miscarriage, I remember how infuriatingly brisk and chirpy the Early Pregnancy Unit staff were. I remember the doctor who performed the final ‘yep, it’s dead’ scan on me getting quite impatient with me because all I could do was cry, and I couldn’t decide or even begin to think right there that minute whether I wanted a D&C or to go natural. I also particularly remember the receptionist in that EPU making me shout across the room that I was having a miscarriage, because she wouldn’t let me go up to her desk to sort out my paperwork. We all had to stand behind the marked line in the doorway and bellow our medical details at her from there. When I’d had the D&C and the resultant infection had hospitalised me, that bitch receptionist told me ‘well you’ve got to or we won’t treat you’ when I protested being made to fill in the fucking stupid ‘how many weeks pregnant are you? Who is your midwife? Where are you planning on giving birth?’ form. For the third time since I knew the pregnancy was doomed. Despite the fact I was in a wheelchair and surgical gown and had a drip in my right arm (my writing arm) and I was crying. And then there was the nurse who scolded me for having the temerity to still be in pain after she’d already given me painkillers. I can’t go past that hospital without feeling sick and shaky, over three years later.
  2. Access to scanning
 – Actually, I’ve been lucky, and this has never been a problem, but then I live in a huge city well-larded with hospitals. But according to the surveys that set this campaign off, 21% of women had to wait three days or more for a scan. Which is, as well as heartless, fucking dangerous. What if it’s ectopic? What if the woman is haemorrhaging?
  3. Safe and appropriate places for treatment
 – Again, during my first miscarriage, I was made to wait, every single time I visited the hospital, in the Maternity waiting room. Which was full, to bursting, with happily pregnant women and their happy talkative families, all coming along happily to see the happy scan which showed their happy living baby’s happy little whim-wham. And this made me feel almost hysterical. Even when I was an in-patient, recovering from complications, they parked me in that waiting room, in my tiny, sweat-stained surgical gown, to wait for over an hour for the scan that was only going to show whether I had ‘retained products of conception’. While other people’s small children pointed at me and shrilly asked what is the matter with that lady, mummy? Where’s her baby? For all subsequent miscarriages I insisted on going to a different hospital, where they have a separate unit for women undergoing miscarriage, well away from the maternity unit, and where I was given my own private room the second time I needed hospitalising (instead of having to vomit my kidneys in front of an audience of random women and their random families, all sharing a ward solely because we’re all female. And I am grateful I wasn’t put in labour&delivery. Miscarrying women often are). It made such a difference. Such a world of difference.
  4. Good information and effective treatment – 
I shall never know if being made to wait for over a week between the ‘yep, dead’ scan and the D&C was a contributary factor to my developing a spectacular uterine infection, but it can’t have helped. I have been sent home to miscarry, even from the ‘good’ hospital, with what turned out to be woefully inaequate doses of painkiller. I have been offered paracetamol alone to deal with the pain while I was bleeding so hard my blood-pressure went through the floor and I could not stop throwing up from sheer agony. I have been treated by many, many doctors who have told me ‘at least you know you can get pregnant!’ *thumbs up, manic smile*. I had one doctor, an actual gynaecologist, specialising, allegedly, in infertility and RPL, check my estradiol and FSH levels during my luteal phase, which predictably told him fuck-all. I have no idea what happened to the remains of the embryo that was surgically removed. And I, by and large, since I switched hospitals, have been lucky, and have had really quite good miscarriage care compared to most.
  5. Joined-up care – 
This is a bugbear. My GP practice know about my miscarriages because I told them. Various letters the clinics should have sent them to let him know I was being treated there never turned up. My infertility consultant, who works at the same hospital I go to for all my dead embryo needs, hadn’t a clue I’d been miscarrying repeatedly until I told her. This despite the fact all my notes are computerised. Even when I was in hospital, no one ever seemed to know why I was there, leading to the whole ‘and how many weeks pregnant are you?’ thing like a knife through the heart. How hard can it be, to read the patient’s notes? At least I’ve never got as far as booking a midwife appointment, and then being chased for missed visits by them. That might well make me homicidal.

So, you know, if you live in Britain, you could, maybe, mention this campaign. Twitter a bit, perhaps. Go completely gung-ho and email your MP, even.

Because, remember, I was lucky, in my care. Lucky. Other women have been treated appallingly, on what was already one of the saddest and hardest days of their lives. It makes me cry. It makes me feel helplessly alone, even now, even today, to remember how just plain uninterested and ignorant some hospital staff can be, and how little they care about our emotional well-being. And apart from anything else, it’s bloody unfair on the compassionate, kind staff, whose gentleness is being drowned out by the tidal wave of arse-gravy created by their peers, and by thoughtless bureaucracy, and ignorance.

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9 responses to “And I am one of the luckier ones

  • a

    Oh my. Well, I’m glad to hear that someone is paying some attention. At last.

    I think everyone’s experience is horrible in a different way and I think everyone encounters some (possibly) well-meaning but entirely asinine treatment at some point. For me, I want to shout #5 from the rooftops – not so much the communication between doctors, but READ THE FUCKING NOTES ALREADY! Someone went to the trouble of writing them down for a reason. Perhaps the reason is that it’s important information? Maybe?

    Here’s hoping that Britain takes notice and takes better care of you all…

  • kylie

    Wow. For all the crap that my 2 month long miscarriage had (yes 2 months- no idea what went wrong) I generally had a reasonably positive experience (if anything in the process could be called positive). I’ve been fortunate/unfortunate enough not to get pregnant again, so that has been my only experience, so I could be an aberration.

    Hopefully this campaign will get people talking enough that it raises awareness, and sometimes that is all that needs to happen to make people make a change (not always, sometimes you need to beat them over the head with a figurative stick until they change). I suspect that one of the factors for my positive first ER experience was that the admitting person had recently done training/ awareness of ectopic pregnancy (that’s what it was thought to be) and was ready to start the appropriate process.

    Maybe this can turn micarriage/stillbirth/ectopic pregnancy into the breast cancer cause of the decade- one of the things I noticed about the breast cancer treatment area was how it did cater to and help those who had to go- including my personal fave- warmed ultrasound gel. It’s a totally different experience from the rest of the hospital.

  • katyboo1

    Oh lovey. I’m crying into my coffee. You write so eloquently. It’s such a shame you have to write it though.xx

  • Dr Spouse

    My experiences have not been this bad (and I also detest mumsnet – I do quite often post on a slightly less smug site which is still fairly heavily populated by fairly smug mothers) but I have still had some corkers. I was pleased to see they were doing this as the media listen to them, though.

  • Laurel

    I am so sorry, all over again, for the experiences you mention. Just not right.

    Because the care model is so different over here in the U.S. it is always a learning experience to read about how care is delivered in the UK, but from the little I know I can say that just about all of these points are concerns here as well. (That’s if you have health care at all, ha ha sob.) I guess that our societies operate much like we do in person: uncomfortable and unhappy things get swept under the rug because people don’t know what to do with all those difficult feelings. Kudos to Mumsnet, the media organizations you mention, and most of all those like you and Katy who are revisiting some of the most awful experiences of your lives in order to help spread the word. Please keep us posted about the effects of this campaign.

  • Betty M

    I find myself in agreement with dr spouse on the subject of Mumsnet. Generally nothing makes me more likely to support the exact opposite but not in this case. I have had pretty good experiences with my m/cs but so many haven’t that there is clearly some way to go. I am gloomy though that not much will happen in the dire financial climate unless it can be done for free which compassion certainly can and that would be a start in many places.

  • Triggers « Nuts in May

    […] and therefore performing D&Cs on viable pregnancies. This is of a piece with the whole Campaign for Better Miscarriage Care, really. Now, before anyone panics, I know, I am sure, that my own D&C, for my first […]

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