Medical Insensitivity

Salt in the wounds (phrase, informal): To make a difficult situation even worse for someone

Let’s be clear from the outset, I love the NHS: Great institution, fantastic values, good and diligent people. Lots of my family and friends work for the NHS and they really are the backbone of this country, salt of the earth. I hope my appreciation for the NHS was made abundantly clear in my earlier blog about the care that Summer and I received on the Labour Ward in March of this year.

That said, I have had a few conversations with people about how their experience with baby loss, on occasion, felt short. I have to say, I’ve felt the same. Some of the negative encounters can stick in our heads, birthing an associated upset or trauma, instead of a baby. And so I’ve decided to write this blog, largely because I believe there’s strength and forgiveness to be found in saying “me too”. I also think it of paramount importance to tell the – most overused made-up-word on this blog – bruth. In this day of social media perfection, airbrushing and photoshop, more often than not, we should be telling it like it is. Finally, who knows, maybe a medical professional will read this and either pat themselves on the back (for not being a numpty) or, perhaps be stirred to act more mindfully going forwards.

Here are some stories, the majority of which occurred in the Early Pregnancy Unit (‘EPU’): the room which no parent ever wants to be in. If you’ve had healthy pregnancies, you may never have heard of it. It’s where pregnant ladies go when stuff goes awry. So you would think that this is the place where sensitivity is heightened, the care is at its greatest, where empathy runs rife – sadly, that’s not been my experience. I have spent so much time there, I’d really like to not have to go back there, but I know it’s probably inevitable given my follow-up investigations etc that are yet to come.

On the whole, I know these are decent people, doing good things. However, I’m not sure I’ve forgiven some of these medical insensitivities yet, so perhaps getting it all out, will help with the healing.

The receptionist: There is a receptionist in the EPU that neither James nor I like. We know her by sight, we know her by name, we always prefer it when she’s not there (is this slander? maybe).

There was a young lady, by herself, in the EPU who needed to give a urine sample. Now, I know that this isn’t uncommon for pregnant ladies, but it is uncommon (by definition) if you’ve never done it before! This lady was uncertain, unsure – again not unusual traits for women in the EPU. She was handed a grey medical boat and asked to give a urine sample – she needed it explaining. When she went into the cubicle to do as she was asked, the receptionist turned to her colleague and said “can you believe that? She probably wanted me to hold the boat for her too!” and then they laughed at her. That still hurts my heart. Everyone in the waiting area heard those comments. I was horrified. As someone who genuinely avoided giving all urine samples until I was pregnant (“oops I forgot” I always white-lied to my GP!) up until age 32, that easily could have been me. A week earlier, I needed the boat explaining. Who’s ever looked at that grey thing and immediately known what it is? I tell you who: no one. That would be WEIRD. Oh how I glared at that receptionist, I still really regret not saying something. Her lack of empathy shocked me. It made me wonder what she’d be saying about the rest of us, once we were out of earshot. Being in the EPU, I had enough to worry about, without worrying about that too. We have a couple more stories about this particular receptionist, which I’ll refrain from sharing. Let’s just say, she’s never received a thank you card.

The second opinion: If you recall from my blog about BoC, we found out that he had no heartbeat at a private scan. They handled it wonderfully, delivering the news kindly, but unfortunately it meant that we’d have to go through it all again, officially via the NHS. We went into the EPU a few days later. The sonographer confirmed that she couldn’t detect a heartbeat, but she needed a second opinion, so she called in another lady. After a repeat scan, tears streaming down my face, the second lady softly said “I’m really sorry, I can’t see a heartbeat” I said “that’s ok”. She then completely forgot herself, turned to her colleague the sonographer and said “Cups! You’ve got spare cups in this room! Can I have some?” All – faked – sincerity gone in an instant. Unbelievable.

The anaesthetist: After I miscarried with My Baby at home, we went ahead with our pre-planned trip to China. I continued to bleed throughout. On our return we went for a hospital check-up and I was told I needed a surgical procedure (called an ERPC), as there was still some remaining placenta and a blood supply to it. I was really upset about having to have surgery. I am a prude (remember the urine thing!) and the thought of surgery, under anaesthesia was horrible. The lack of control. I cried when the consultant told me. I told him that I went to university with medical students and I know how often they mucked about and mocked people. He used the perfect word, he said: “I assure you, we will maintain your dignity”. If only they had.

I was wheeled in to the operating theatre the next day. The anaesthetists were very nice, both chatty, both male. They were playing music and asked me to choose a song to fall asleep to (oh right, you want me to choose a song to ruin forever? A song to forever remind me of surgery after miscarriage?) I was wearing a hospital gown and said “oh wait, I’m still wearing my underwear, should I remove it?” and the anaesthetist replied “nah don’t worry, we’ll remove your knickers when you’re unconscious”. And just like that, all dignity was gone.

The 12 week scan: Do sonographers know how momentous the 12 week scan is? Of course they do, but some may need reminding. I was so looking forward to my 12 week scan, it was third time lucky. I was finally going to get one! BoC and My Baby never made it that far, but Summer, Summer did.  The sonographer was off with us from the beginning, perhaps having a bad day, perhaps just a grump in general. She was running ahead of schedule and wanted me to go ahead with the scan, without James. I told her I was 10 minutes early and that he was parking the car, but would be here in time for the appointment. She wasn’t happy, she made us wait 40 minutes. My bladder wasn’t happy either. When we went into the room, it was all so, perfunctory. I tried to give her an inkling that this was a particularly special, yet worrying time for us. When that didn’t work I explicitly told her “I’ve had two previous miscarriages”. Hint hint: be nice to me, please. She didn’t seem to cotton on, but carried on with her checks. Fair enough – the 12 week scan is not just for the parents, it’s actually for the professionals to do their thing. She did her bit, halfheartedly pointed out a few of Summer’s organs and then said “is there anything else you want to see?” we asked “err, what else can we see, please?” – how are we supposed to know? When it came to getting our baby scan photo, we were left bemused. It was a good thing we were never going to use it in a baby reveal or put it on social media, because over the top she had typed “OF NO DIAGNOSTIC VALUE”. Have you ever seen a baby scan with that written on it? Cheers for that.

The sonographer: I’ve noted previously that Summer was a difficult pregnancy, so for peace of mind, we were having more regular scans done privately. On the evening of our appointment, the clinic was running late and I was bursting. Seeing as I was nearly 19 weeks, the receptionist said it was fine to use the loo. When we went in for the scan, the sonographer was shaken: “There’s no fluid left!” she blurted out, eyes incredibly wide. “Oh I’m sorry, I know. I emptied my bladder, the receptionist said it was ok”. “No! The baby! There’s no fluid around the baby!” The sheer terror in her eyes and the shock in her voice, it told us everything. She asked me to cough, the baby did not move. I coughed again, nothing. James and I didn’t even ask any questions, we just said we’d go to the hospital. She was shaking, utterly speechless. I understand that she was shocked, but I still can’t shake the look in her eyes and the sound of her voice. Surely that wasn’t her first bad scan? I really could have done with her working on her game face. I had no idea what had gone wrong, but I left via the back door (for our privacy) feeling ashamed.

The stupid question: On two separate occasions, I have found myself sat in the EPU, in front of two different doctors, who asked the same question really abruptly: “Why are you crying?“ One was the day I’d lost My Baby and the other was my first appointment (they asked me to come in for) after we’d lost Summer. The notes were right in front of them. I understand that they probably didn’t get time to read them, but is it ever ok to bluntly ask a mother in the EPU why they’re crying? There are ways to ask these things, caring ways. Fake it if you have to. Both times I said “why do you think? (gesticulating to the notes), because I’ve just lost my baby!”. One of the doctors replied “you seem upset, do you want to come back another time?” Err no, not really. I don’t ever want to be in the EPU, no pregnant lady does. Please try to understand that.

The use of stirrups: During my pregnancies I’ve had so many internal scans which have always been very dignified with minimal discomfort; it was simply a case of lying back on the bed. I’ve had so many (before, during and after pregnancy), that I know it’s possible to perform the scan this way. After the loss of Summer though, one consultant preferred to use stirrups, because it was easier for him. I’d have been ok for him to use stirrups while I was pregnant (although uncomfortable, I’d be doing it for my baby), but when they’re used after you’ve lost a child, because it’s simply easier for the consultant, well then it’s just degrading. To my mind, patient comfort and preference should have taken precedence.

The terminology: A week after we lost Summer, I found myself back in the EPU for a follow-up appointment to check that all tissue etc had passed during labour (incidentally this was the day which had originally been booked for my 20 week scan – incredibly bad timing). Unfortunately all wasn’t clear and so I was going to have to go in for an ERPC. I asked why this hadn’t been checked after I had Summer and the doctor said something along the lines of “when an early miscarriage takes place…” I interrupted, burst into tears and angrily said “are we still calling it that? Early miscarriage? This was neonatal death. This wasn’t early for me. This was nearly 20 weeks, nearly half way. There’s nothing early about that!” The poor doctor, he hadn’t meant to offend, but I do still think it insensitive to lump it all together as “early miscarriage”. I’ve had two early miscarriages – neither of which deserve that terminology either – and this was altogether very different.

If I’m being positive, I could say: these are only eight stories. Eight stories in the grand scheme of things is pretty good, especially given the number of medical encounters I’ve had. Though that’s true, I still can’t shift how they made me feel. How recalling these experiences winds me back to an already difficult time and rubs salt in my wounds (ha, salt of the earth NHS staff, rubbing salt in the wounds – there’s something poetic about that). None of us are perfect though, least of all me. We’re all just muddling along and trying our best. So I’ll try my best to reframe all this and remember that instead. Time to forgive and try to forget.


(12) Comments

  1. Stephanie says:

    I’m so sorry you had these experiences. I had two very negative experiences when pregnant abroad, with the most highly recommended doctor in the city. I left two appointments in tears due to her insensitivity and lack of anything resembling bedside manner, and then changed hospitals and doctors. It feels harder to understand when you presume they’ve gone into the profession because they care about people. I hope very much you don’t have similar experiences in future x

    1. Anjulie says:

      Thanks so much for sharing your experiences Stephanie. I really was in two-minds about writing this, because it felt like ‘shaming people’, but (and I hate this too), it’s been so helpful when people say “me too”. I don’t know why. Finding the baby loss community is a weight lifted somehow, a burden shared perhaps, but all of the grief – it’s just so much, it’s all too sad, none of it should exist. You sharing your thoughts feels similar, I’m relieved thinking “it’s not just me”, but then I’m really sad you had bad experiences too. Next time I have a bad medical experience, I’m calling the person out, I’m going to tell them xx

      1. Ruth Ireland says:

        Sadly I have also had some negative experiences on the early pregnancy unit too. I remember them so clearly still. I can still recall/feel the feelings I felt at the time. This makes me so angry as I am learning it is quite common. I can not believe some people can be so insensitive. I believe it could be that these people have become desensitised to such situations. They really do need to be challenged on their behaviour. I haven’t had the courage to feedback on my experiences. I remember at the time feeling so strongly about it and I said to my husband I am going to write a letter about my experience so that they can learn from it but I have never written that letter. Maybe I should.

  2. Rachel says:

    Thanks for posting this Anj, everyone one of your examples is appalling and I’m so ashamed on behalf of the NHS! It’s important to hear this as I think sometimes we are guilty of switching our emotions off when we shouldn’t. Please don’t be afraid to call people out. They need to learn from this .It’s awful being on the other side as a patient and actually one of your examples really resonates with me and I feel a whole lot better having read your post, thanks so much for sharing Xx

  3. Rhi says:

    (long comment, sorry!!)
    This touched so many of my memories, I had some amazing experience with clinicians who were so sensitive to our situation and caring and supportive, but there were a few experiences that have really stuck with me. One was the consultant who one day came around and asked us about signing a non resuscitation order for Arlo. He knew we’d been chatting about it, and came over to us in a fairly mild manner to ask us if we were happy to proceed but then started joking and trying to make the situation upbeat and even funny. But I was signing a piece of paper to say that if something awful happened to my baby, that I didn’t want every bit of medical help they could provide. What. The. Hell. I knew it was necessary, Chris and I had talked about it and we understood the extent of the damage to both his brain and kidneys meant it just wasn’t going to get any better, but that didn’t make it an easy decision, and certainly not a jovial one.

    The other experience was with a GP, my practice’s lead GP, who I hadn’t met previously but who came to the house when we brought Arlo home, to get to know us, so that when the worst happened, he was able to sign off the death cert. Instead of coming in and asking a couple of basic questions and then leaving (another gp also visited the day before, she was wonderful, caring, visibly upset for us and left as quietly as she arrived), he started asking me to go through everything that had happened over the previous 4 weeks, including the reason for Dylan’s death. When I explained we didn’t have post mortem results through yet, but that we had been told it was likely an infection, a conclusion they’d come to due to the smell of the waters when the babies were delivered, he shrugged it off and said “oh that was just because the baby was dead”. My child. My little boy. My first baby. I was so shocked I didn’t know what to say. He went on to tell me a ridiculous story of hope about another patient who had been in the same situation when brought home from the hospital and had just turned 12. He knew next to nothing about the situation, and to give me a ridiculous glimmer of hope was just idiotic. Arlo died the next day.

    I wrote the GP a letter several months later. In it I told him of the lasting and incredibly negative result of his callous and insensitive behaviour. I told him I was sticking with the practice because the other doctors had been brilliant, but that I would categorically never be having an appointment with him and didn’t want any form of contact from him. The letter wasn’t about me getting an apology that would make no difference to the awful impression he had left on me, but that I wanted him to know what he had done in the hope he wouldn’t ever do it again. I put it in an envelope inside another envelope, both marked private and for his attention only. I never did hear anything more from him, but I hope to god he took note of what was in that letter. I don’t think I will ever forget how he made me feel in that 15 minutes. He shouldn’t be a lasting part of the memory I have of those precious few days at home with Arlo, but he will be.

    Sadly I have had another experience more recently, while pregnant with Eli, where a gp referred to him as my second child, in spite of me having just a few moments earlier explained all about the twins. I somehow found the strength to pull him up on it, told him that I was a mum of 4 babies, two who had died and one who hadn’t been born yet. He got all shirty with me, I presume because he was embarrassed, but I stayed strong through the rest of the consultation and thankfully Chris was at home when I got in, and I burst into tears and had a big cuddle with him. It doesn’t really get easier, but sometimes you find a glimmer of strength that can make you proud of yourself and the way you’ve carried on remembering your babies. Xxx

    1. Anjulie says:

      As always Rhi, thank you for your honesty and insight. I’m again and again coming to appreciate how brave you two were, and only just glimpsing how difficult it all must have been and continues to be. Before Summer was born, they had neonatal consultants in trying to convince us that she wasn’t going to make it, that it would be an uphill battle if she did etc. We logically agreed that we would not put a child through that, but then when she was born, seeing her, well I don’t know how logic could ever have prevailed. So the fact that you two had to face a DNR conversation, there are no words. Just so much love.

      As for your GP, I can’t believe he never replied. Shame on him, again and again xx

  4. Melanie Shaw says:

    Anj, every single one of your examples is nothing short of mortifying and horrendous. As you say, you would think that people working in these roles would be passionate and compassionate about what they do. It is simply shocking and I am sorry you and James had to deal with the additional stress caused by these interactions. I imagine I would have been so taken aback that I wouldn’t have known how to respond! Xxx

  5. Beth says:

    I have found your blog through the Miscarriage Association on Instagram today.
    I am so sorry to hear of your losses, I’ve had a good cry reading some of your posts.
    I met the loveliest of ladies when I went into A&E with a very large bleed at 16 weeks in October last year.
    We had suffered two miscarriages prior to this so my anxiety was at an all time high. (January 2019 at 7 weeks and April 2019 discovered at our 12 week scan) seeing the volume of blood, my head was telling me there was no way our baby would be OK.
    I went into A&E and was met by the most wonderful receptionist, she got me a wheelchair and held me so tight until the doctor came to us. I had two internals (cervix intact) and a scan which showed baby was fine. They wanted a more detailed scan the following morning as the one in A&E wasn’t good enough to check my placenta apparently.
    I was kept in for a few days, one HCA who came to see me a few times made various comments which make my jaw clench thinking back;
    “oh well at least you have your boys at home”
    And “you’ve already had two miscarriages, something is really going wrong isn’t it?”
    At that point I was told all was OK with baby (although I still didn’t believe it could be)
    I was sent for my scan, everyone in the room except me was personally told they were running behind schedule. We enquired how long it would be and were met with huffs and puffs.
    The receptionist in EPU was rude and practically argued with me about the scan focusing on my placenta saying they don’t do that until later in pregnancy. I just don’t understand why, when someone is in obvious distress and you are in a caring profession that you would add anxiety to an already fraught situation?! Despite her protests they did check my placenta and all was OK, they could not say why I had bled.
    I was so appreciative of how the A&E receptionist dealt with me that day, we went back a few weeks later with some flowers, a card and big hug.
    Going back to my 2nd miscarriage found at the 12 week scan, our very close friends were also there for their scan at the same time. I had explained this to the sonographer telling her I didn’t want to bump into them, she said there was a different way I could walk out but failed to take us that way.
    We were taken to a room through a door directly next to where we had the scan and left there for nearly an hour, we could hear people having their scans with the obvious sound of joy.
    There are always going to be improvements that can be made and people saying things they think are helpful but actually add salt to the wound. But I’m glad there are those that shine through and help in our times of need.
    I had planned on taking my baby girl to meet the lovely receptionist but the pandemic had other ideas!

    1. Anjulie says:

      Beth, thank you so much. Not only for going out of your way to find the blog, but to take the time to read it and to be brave enough to comment and share your story. I am so sorry that this is a blog that resonates with you, but I love how you’ve interspersed it with some happier moments too – definitely take your daughter to meet the receptionist when you can, I’m sure she would absolutely love that. If you wanted to subscribe to receive email alerts for new blogs, that would make my day No pressure, obviously. Love, Anjulie xx

  6. SLK says:

    I came across your blog through the miscarriage association. Thank you for writing about your experiences. For someone like me who struggles to articulate on paper all the thoughts and feelings buzzing through my own head it has been very helpful to read the experiences of others.
    I suffered a missed miscarriage at 12 weeks during lockdown. I agree with your comments about the use of terminology. The doctor at our EPU referred to my vagina as my ‘front passage!’ ….not a phrase I’d heard since being a teenager….It actually made me and my partner laugh because he was so awkward around discussing the miscarriage to us. It felt very British that you would be easing someone else’s awkwardness during your own suffering!
    Anyway I look forward to reading your blog.

    1. Anjulie says:

      Thank you SO much for taking the time to find and read my blog. 12 weeks (that supposedly magic number) and in lockdown too, I’m sorry, my heart hurts for you. It’s such a bizarre thing to say, but I’m pleased if reading the post has helped you in some way. If you wanted to subscribe to receive email alerts for the blog, you can do so by using the Menu or via the Home page. If however you just wanted to have a little read, I’d suggest reading Misconceptions and Pregnancy Announcements, as those are the two I’ve received the most feedback on, from people going through it. Wishing you well in your journey of healing – I find that there’s strength in numbers xx

  7. Karen says:

    Speaking as a (n albeit retired) NHS doc, I think it could be helpful not to totally forget these experiences but find a way of getting them into the hands of someone who manages an obstetric unit. You know how there’s that best selling book, by the obstetrician, that gives the general population a flavour of what it’s like to work in the department? – maybe something that could be read by receptionists and sonographers and other staff. So – not a vendetta – but a guide about what not to do that could be used in in-house training for all posts in all parts of obstetrics. Sorry, rambling again. But there’s definitely teaching material there. And sadly, we could all add to it xx

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