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Miscarriage/pregnancy loss

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Shouldn't we expect better care?

28 replies

acroo88 · 06/10/2023 15:56

On Tuesday after finishing a shift at work, I discovered I was bleeding and only 7 weeks pregnant. After a long journey home, I told my partner who persuaded me to phone the doctors, I hadn't even finished saying I was bleeding when the receptionist cut me off saying "When I had my...oh um you need to go straight to A&E" Before I did that, I contacted my midwife to ask about bleeding and how much was normal in early pregnancy; who replied 6 hours later with "Speak to GP no bleeding in early pregnancy is normal-go to triage" Off we went to our local hospital, up to Women's Health/Triage to then be asked why I was there so when I had to say those awful words aloud again: that I was bleeding and 7 weeks pregnant. The looks on their faces were enough, we then got sent to A&E as I wasn't 18 weeks pregnant!

I've never felt so humiliated to have to say aloud again in a public A &E department full of patients that I was bleeding and 7 weeks pregnant. Long story short, we had blood tests and an examination which showed the womb was closed so were sent home that night.

Wednesday morning, we returned for an ultrasound scan, which then ended up in a vaginal scan to then be told that it could be a miscarriage or an ectopic pregnancy. They also found a mass/cyst/grey area on my right ovary and fibroids in my womb. That is when my bravery and positivity broke; I completely and utterly shut down emotionally and could not even get dressed.

Yesterday, we returned for another blood test to check my hormone levels are coming down which they are but I still cannot get over the constant reminder every time I go to the toilet or get undressed what is happening to my body.

I've gone from emotional meltdowns to anger to now feeling completely confused and empty.

OP posts:
hotcandle · 06/10/2023 16:01

It sounds like you got the care you needed?

justwatchingtelly · 06/10/2023 16:04

I didn't want to read and run.

There are two things at play here. The first is that miscarriages are awful. They evoke such a lot of emotions but society does not seem to recognize them, and everyone is just a little bit awkward around the entire thing. I have experienced responses from downright clinical, to clumsy, to ignorant, to dismissive. Thankfully, I have also experienced care and support, but it was from the minority of people.

The second is the state of the NHS. It's on its knees. There is no funding. I have never known a separate ward for these situations, I recently had a hysterectomy and recovered on the maternity ward. Luckily for me, there was no trauma or sadness around my operation but I know that isn't the case for everyone.

I agree that you should expect better care, but they can't magic resources out of nowhere. People are trying their best with the situation that they are working in.

It's a time to petition with your MP, but beyond that, I don't know what else can be done. 😞

I am sorry that you are going through this. There are a lot of women who can relate to your position. Some, several times over.

Mumsnet was a great support to me during these times (there is a board dedicated to this topic) and I hope that you will find the same comfort and solidarity.

Flowers
acroo88 · 06/10/2023 16:06

Thanks for you reply, I do agree the NHS is completely overstretched but I think I am just so cross with the way we were treated and sent here, there and everywhere. Good idea about contacting the MP-thank you!

OP posts:
acroo88 · 06/10/2023 16:08

Not really an ideal level of care I feel, being sent from a ward where I should have stayed and been dealt with sensitively to being sent to a very busy A7E department where everyone can hear what you are saying- it was tough enough to say out loud that I am bleeding never mind worrying about who could hear.

OP posts:
FlawedHumanBeing · 06/10/2023 16:08

I never even got seen the first time. After IVF and a positive pregnancy test, I was 6 weeks when I called them to say I’d started bleeding. I was just told to keep testing every week. they wouldn’t even do a blood test.
Another miscarriage I was bleeding solidly for 6 weeks and testing strongly positive the whole time. By the time they agreed to scan, and actually gave me a scan appointment, I tested negative that morning. I didn’t even bother calling them the other two MC. It’s all so appallingly cruel. It’s just ‘one of those things’ to medical staff or people you know, the heartbreak of losing a much longed for baby is made so much worse by the indifference of everyone else.

I’m sorry you are going through this Flowers

KatieJ345 · 06/10/2023 20:32

I think it’s crazy that you would have to go and explain this at A&E. It definitely shouldn’t be like that. I had a MMC in May after finding out at the 13 week scan and the staff were nice and treated us sensitively. Though when I had the medical management, I was on the same ward as people who had just given birth which was upsetting. Some things don’t seem well thought out.

Hayliebells · 06/10/2023 20:42

I completely understand your distress, I’m sorry for your loss. When I had my MC, I was also told to go to A&E, which involved waiting for hours, and I’m also at a loss as to why that’s where you go when you have a MC. They didn’t do anything when I eventually got seen, I was sent for a scan at the women’s health clinic, so why couldn’t I have just gone there initially? Regardless of the pressure on the NHS (which I have every sympathy for, it’s been decimated), why can’t care be more patient centered? Indeed, if the requirement to go to A&E was dropped, and if I was just told by 111 to go to the clinic for a scan, I’d have used fewer NHS resources overall. It’s just not really good enough in the midst of trauma, is it?

caerdydd12 · 06/10/2023 20:49

I wonder if you're either in my area or there are multiple, but we don't seem to have an early pregnancy unit.

The pregnancy assessment unit is from 20 weeks and the maternity assessment unit is from 16 weeks according to my paperwork (although no idea what the difference is between the two). It says any earlier than those dates then you'd be treated in A&E here.

monicagellerbing · 06/10/2023 20:56

I say this gently but what were you expecting A&E to do? If it's a miscarriage there's nothing anybody can do to stop it, especially at 7 weeks. I say this as someone who has had a miscarriage.

LovesFood1987 · 06/10/2023 21:04

Sending a lot of sympathy. I've had 4 miscarriages now and the care on the NHS is shocking.

The research shows that most women grieve even in early miscarriages and yet staff seem to totally ignore this fact and treat it as just a medical thing instead of the loss of a much wanted baby. The loss of hopes, dreams and plans for the future that go with pregnancy.

All the best with everything, it's horrible :-(

Hayliebells · 06/10/2023 21:27

monicagellerbing · 06/10/2023 20:56

I say this gently but what were you expecting A&E to do? If it's a miscarriage there's nothing anybody can do to stop it, especially at 7 weeks. I say this as someone who has had a miscarriage.

So why are women told to go to A&E then? You're right, they don't do anything, yet that's where GP's, 111 etc, tell you to go. As far as I'm aware, you can't just rock up for a scan at the clinic, without going to A&E first. At least I couldn't. It's not women just choosing to go to A&E for the fun of it (it is NOT fun at all), it's because that's where they're told to go. And it's an entirely unsuitable place to go.

mummyh2016 · 06/10/2023 21:42

A+E isn't the right place at all. Trouble is though there isn't a 'right' place. It would be EPU if you have one however they aren't walk in or open 24 hours normally. There needs to be something in place where in these circumstances you can have your details sent to EPU who will contact you for a scan in the next couple of days, and be told to only attend A+E if you're bleeding heavily. It's shit. My friend had a MC a few years ago and the hospital wouldn't even scan her to check it was complete, she was told to attend her booked 12 week scan in 4 weeks time. She ended up paying for a private scan.

I'm sorry for what you've been going through Flowers

Rainbowx90 · 06/10/2023 22:00

monicagellerbing · 06/10/2023 20:56

I say this gently but what were you expecting A&E to do? If it's a miscarriage there's nothing anybody can do to stop it, especially at 7 weeks. I say this as someone who has had a miscarriage.

I came to say the exact same thing. I've had 3 miscarriages and a baby born sleeping.
Unfortunately there is nothing anybody can do to stop your body from miscarrying, my second miscarriage I was told to go to A&E but didn't bother as I didn't want to take up the space of someone that needed it in an actual emergency.
It sounds like the care you recieved was fine.

StuffLoriThangs · 06/10/2023 22:03

I think miscarriage care is severely lacking.
Lacking in thought and compassion and actual care.

im sorry for your loss and your experience OP.

WeWereInParis · 06/10/2023 22:23

That does sound poor. I had a miscarriage a few years ago at 7 weeks and when I called the GP to say I was bleeding, they booked me in to the EPU the following day where I had a scan. The receptionists were actually lovely, and arranged for the GP to call me back very quickly even though they were technically out of appointments for the day. I don't think A&E would have been the right place at all.

I called the midwife first though, and all she said was that she'd cancel my 8 week booking appointment. Which obviously ultimately I didn't need but it wasn't a hugely helpful response. "I'm experiencing some bleeding" "call your GP, I'll cancel your booking appointment next week since you probably won't be needing it".

acroo88 · 07/10/2023 09:57

To everyone who understands that my issue was going to A&E and not a Women's Health ward to be dealt with sensitively -I want to say thank you for your understanding and messages. To the ones who think the care received was acceptable I feel sorry that you think this and hope you never have to go through a miscarriage or any other emotional trauma where you really don't want to be sat with people who are pregnant/giving birth.

OP posts:
Quisquam · 07/10/2023 10:29

The second is the state of the NHS. It's on its knees. There is no funding. I have never known a separate ward for these situations

I have 4 miscarriages and ERPCs 30 years ago. I was put on wards, with women having abortions, and one time on a mixed sex ENT ward. It is acutely embarrassing to have a nurse come to wash the blood off before the ERPC, with an elderly man in the next bed. I remember the morning after the first ERPC, an obstetrician came to see me. I asked her what had gone wrong. As she was walking away, she said, over her shoulder

“Blighted ovum!”

No explanation of what that meant or how it happens - in the days before the internet.

It’s nothing to do with the current state of the NHS - it’s about the complete lack of empathy for women, who feel like they’ve lost a child, and that was the culture 30 years ago. I don’t think my treatment was anything unusual. From what OP says, nothing has changed.

SM4713 · 07/10/2023 11:01

I'm sorry for your loss OP Flowers We all deal with grief differently- there is no right or wrong reaction to a loss.

After my 1st MC at 12 weeks, I bled for 3mths. I wasn't aware this was abnormal, I wasn't told to do another pregnancy test and this was before I was on MN to ask.

2nd MC at 7 weeks happened at work. I'd had spotting, but absolutely no pain at all. I was given a scan the next day at the early pregnancy unit (EPU), then back at work the following day.

3rd MC after IVF. I'd had a scan at 9 weeks showing a heart beat, all good. 2 weeks later when I started spotting, EPU refused to see me, because this was the tail end of covid. The Dr on the phone was sympathetic, and said that in 'normal times' they would have done a scan, but due to covid- they couldn't!

Sorry if TMI. The most ridiculous part though, is that I actually had to go to the EPU twice, because I wanted the products to have genetic testing. I bled for a week, passing clots etc throughout. I assumed I'd just leave the jar labelled at reception, but no. I had to sit and wait with all the other ladies actually having scans done, then sit in the nurses office for 20mins filling in forms, explaining things etc. I understand the reasoning, but I had absolutely no scans nor blood tests, despite the heavy bleeding etc.

OP, I'm sorry that you were directed to go to various places. Isn't there a hospital near you with an early pregnancy unit? Mine initially asks for a GP referral, but some are self-referral if you call and speak to them beforehand.

You might find this link helpful for advice and further support. They also have a phone helpline too.
The Miscarriage Association:Pregnancy Loss Information & Support

The Miscarriage Association:Pregnancy Loss Information & Support

Learn about the Miscarriage Association, how to cope, and support those experiencing pregnancy loss. Access vital resources and information.

https://www.miscarriageassociation.org.uk/

CluelessInLondon · 09/10/2023 10:03

@acroo88 Sorry for your loss, and the experience you had getting treatment. I think knowing what to do for women experiencing first trimester loss is a real problem for the NHS - everywhere seems to deal with it differently and in some places it seems quite heartless. How are you feeling now? Have things progressed for you?

So sorry to everyone else who has experienced a loss as well, especially where the distress has been exacerbated by poor care or not being clear on what to do or where to go.

When I miscarried last month I had to go to A&E - the only way into the Emergency Gynae Unit at my local hospital is either through A&E or a referral from a GP, and maternity triage is only for pregnancies 18 weeks and over. I was in the hospital coincidentally anyway as I had my booking appointment with the midwife so decided to just go to A&E - bizarrely, the midwives can't even refer to EGU so when I told her that I was worried because I'd been bleeding for around 36 hours all she could tell me to do was go to A&E once my appointment was finished and they could arrange a scan for me. So I had to spend 40 minutes in a streaming queue just for the streamer to take my details and book me a slot for a scan the next day at EGU, which was a waste of my time and a waste of streaming capacity as well when there were other patients who needed A&E there and then. I will say that the care I got at EGU itself was very good, and one thing that was reassuring is that they confirmed I can self-refer in a future pregnancy due to having had a previous loss, so they told me if I get pregnant again I can call them and they'll bring me in for extra scans - which at least eases the anxiety I'm already feeling about a future pregnancy despite the fact that we haven't started trying again yet!

acroo88 · 09/10/2023 11:55

Thank you for your message CluelessInLondon I am so sorry that you have a similar experience, the awful wait for a scan and being sent to A&E just makes it seem so much worse. I'm angry at the moment and just want to be seen properly which can't happen until the pain/bleeding stops and I take another pregnancy test in 3 weeks. I a dreading doing this, we have had 6 months of taking tests each month, full of hope to see those negative lines. Take your time with the next pregnancy and do it when YOU feel ready. Reassuring to know that you will have better care in the future but still doesn't make what has happened any easier I'm sure.
In my emotional/angry dealing with the loss I am not going to stop until the care is improved for all-it shouldn't matter where you are in the country the expectations should be the same and Early Pregnancy care must be improved.

Take care,

OP posts:
PinkRoses1245 · 09/10/2023 12:08

I had a similar chaotic experience trying to get care when I had bleeding at 11 weeks. Ended up in A&E for 7 hours before it turned out I wasn’t even on the doctor list (I’d seen the nurse). We left as I knew I wouldn’t get a scan by that point (midnight). Had private scan instead which confirmed miscarriage. GP, midwife and 111 all advised going to A&E but it’s a total waste of time. If it happens again I wouldn’t even bother trying to get NHS care.

PinkRoses1245 · 09/10/2023 12:09

And please if you can afford it; look at private counselling. It has really helped me process what happened.

kiaraluna · 10/10/2023 10:15

@acroo88 I'm sorry for your loss. I also had a miscarriage at 6 weeks last month. I don't live in the UK. In where I live, we don't have EPU. When I had bleeding that night, the only place I could go was A&E. I had a very bad experience which added so much pain on top of the miscarrige...

I too had to tell the medical staff what's happening to me, and for 4 times... The 1st time to the staff at the registration counter; the 2nd time to the staff at the diversion station (and when he asked questions like whether it was my first pregnancy, which was, I couldn't pretend to be calm anymore and broke down in tears in front of other patients waiting there); the 3rd time to the A&E doctor; and the 4th time to another doctor after I was sent to the ward. I might have repeated that to some other nurses, I lost count of that.

And when I was waiting in the A&E waiting for someone to bring me up to the ward, I missed the nurse's call because I was in the toilet, and the nurse asked my husband who's waiting outside to take me to section 19 (which I also heard clearly inside the toilet). So after toilet, I sat back down on the wheelchair and my husband push me while trying to find section 19. But after circling around the A&E area for 2 times, we couldn't find 19 cos the numbers ended at 18. We asked many staff along our way, everyone just pointed us to go straight and said 19 should be somewhere around the corner, but we went around for one more time and still couldn't find it. We did once stopped at 18, which was a nurse station, and asked them where we should go if we needed to go up to the ward. But they said they didn't have my name there, then brushed us off and asked us to keep finding 19 - which actually didn't exist. After we went around for one more time and back to 18 again, the nurse there finally asked if I was *my name, and said I should follow them up to the ward while having this "what have taken you so long to get here" look on their faces... Honestly, I was infuriated, but I was just too sad to be angry. How on earth could everyone, who works there every day, not know that there's no section 19? I'm glad that I had asked for a wheelchair, otherwise I'd be walking around for 5 minutes while bleeding...

It was just the beginning of a horrible experience... Actually I only bled very lightly on that night (but I think any kind of bleeding is not normal during early pregnancy and so I went to the hospital), but they basically treated my case as miscarriage when they couldn't find the fetus after 3 vaginal ultrasound scans. They said they would need 2 blood test results (for hCG) to come to a conclusion, and to rule out the possibility of ectopic pregnancy. I was then discharged after the first blood test, went back there 2 days later for the second test, and they arranged me to go back for another scan but only 3 weeks later (other patients were all going back the next week). They didn't explain anything to me. And they always talked so fast and in an irritable manner, making you fear of asking too many questions. So I thought perhaps they basically thought I already had a miscarriage and so there was no urgent need to do the scan again in the coming week. And they also said they wouldn't phone me to tell me my blood test results if "there's nothing abnormal/to be concerned" (of which only they could define what that means), cos obviously they're too busy to make follow-up calls to everyone. They didn't think you needed to know the results, because it's not important/necessary for you to know - but it actually was.

So 3 weeks later I went back for the scan, but this time to the Obstetrics and Gynecology Department, with all other patients either pregnant with a big bump, or holding their new born babies for postnatal appointments. I once again had to tell the nurses there that I had a miscarriage in front of all other pregnant patients, when they asked if I was there for prenatal checkup. When I entered the doctor's room, he told me that my 2nd hCG level had gone up nicely, doubling that of my 1st result, and it seemed that he thought he's going to do the scan for me to "see the baby", like I was doing a normal prenatal checkup. I was shocked, because I thought they had concluded that it was either a miscarriage or an ectopic pregnancy 3 weeks before, and I had made myself accepted that I had already lost my baby. But at that point, it wasn't a silver lining but just a piece of critical information that came to me way too late... because I did start to bleed heavily a week after I was discharged from hospital, and I went to check my hCG level at a private clinic and it had dropped to less than 5 (negative). So I told the doctor that, and that's when he said, 'oh then, it was a miscarriage'... I don't know why I was the one who told the doctors what's happening, rather that they telling me what I could do... to perhaps save the baby when there was still a chance. Why on earth didn't they tell me that my hCG level did go up, that I hadn't really had a miscarriage yet? Even though rationally I know it's still a very slim chance that I could have saved my baby, but the way they didn't follow up each case with the promptness and accuracy they should have, just because they're too busy, is not something that is forgivable.

Maybe it's just like that no matter which country you're in. Public hospitals are notorious for their horrible services, while private ones are extremely and unreasonably expensive. There's nothing we can do about it.

Thriving30 · 12/10/2023 21:58

acroo88 · 06/10/2023 16:08

Not really an ideal level of care I feel, being sent from a ward where I should have stayed and been dealt with sensitively to being sent to a very busy A7E department where everyone can hear what you are saying- it was tough enough to say out loud that I am bleeding never mind worrying about who could hear.

Just wanted to give you some support. I had a similar experience recently, went to a&e as I was actively miscarrying, I knew it at the time, but was in absolute agony and was sure I was having a complication (turned out I was right). I had to explain all this to a receptionist in the a&e department, with people literally behind me hearing everything I said, I felt all their stares as I turned back round. To make it worse, young children and babies were coming in through the department to get to the children's a&e which was next door, it was just awful and I left a couple of times to just get some fresh air because I couldn't take it.

A few days later I had to return for another scan to confirm I'd expelled everything and it was in the same department where healthy pregnant women are having their scans and seeing their babies for the first time. Same waiting room and everything. Absolute shambles. No sensitivity.

Edited to add: It was also a doctor at 111 who directed me to A&E, to be fair it was the right place for me because they sent me to the gynae ward as soon as there was a bed for an examination by gynae doctor.

StuffLoriThangs · 13/10/2023 06:31

I feel that miscarriage is so common that they should really have better care in place. Considering much of the nhs has “business messages” of patient centred care. It’s not where miscarriage is concerned.
We get what we get and we should be grateful about it.

Ok. But the standard of care isn’t really good enough. I know the resources aren’t there. But why not? I come back to - miscarriages are relatively common. Doesn’t mean they are normal. But if 1 in 4 pregnancies result in loss, why is the transition of loss not more compassionate, more centred on the needs of what is required at the time of needing it?
why are we still attending scans where healthy pregnancies are happening?
why are we being asked to attend a&e when they don’t know what to do with us?

in regards to the op, yes what happened was the best they could do with what they had. But why is that?