The NHS just isn't good enough when dealing with pregnancy loss

[DesignerRecliner]

I've posted about this on other threads but I feel this warrants it's own discussion.

My situation is that I was diagnosed with a MMC on 11 May and was given medical management to take at home. I did this but tissue became stuck in my cervix (unbeknown to me) and I lost a lot of blood as it was pouring out of me. I had to visit the EPU on Friday 13th as an emergency and wait 2 hours to be seen. I was then given an exam with no pain relief or gas and air, which was incredibly painful. They found tissue lodged in my cervix and removed this with forceps. This was agonising.

I was admitted that night due to my blood pressure being in the toilet. The tissue that was removed was put in formalin, which meant it couldn't be used for genetic testing - despite myself and my husband making it clear that we were under a Tommy's recurrent miscarriage clinic and the tissue needed to be sent to cytogenetics.

The next day I went home and was told to look out for anymore clots or significant pain. The next 2 days I was getting more uncomfortable and bleeding heavily, I was woozy when standing and very lethargic. Tuesday 17th I went back to the EPU and had to wait 6 hours. They eventually rescanned me and found tissue had been retained along my c section scars, but I was told it was a small piece. They offered surgery or more pessaries but heavily pushed the tablets and said surgery could perforate my uterus. I took the tablets on their advice and had more bleeding and tissue passing.

I've been in pain for the last 3 weeks and today took a pregnancy test which was a glowing positive. Called the EPU to be told to come in for a rescan to check for more retained tissue. They found the whole bloody yolk sac was still visible and inside me, so the pregnancy hadn't passed at all. This is four weeks since we were told about the MMC and six weeks since the pregnancy stopped progressing.

When asking about removal of the pregnancy, they can't offer any dates before next week! So that'll be 7 weeks I've been carrying a deceased pregnancy. On the day of surgery, I'm to be nil-by-mouth but as it's the emergency theatre list, it could be anywhere from 8am to 8pm before the surgery is performed.

This is shambolic. I know my particular situation is not the usual in terms of repeated medical management, but each time I've been to the EPU they've been dispassionate, unable to see me for hours and had multiple women crying in pain in the waiting room.

Why do we have to accept this shoddy, poor treatment? The emotional toll and anguish of losing a pregnancy is well documented and the physical effects are significant.

Why are we made to wait hours to be seen in a public waiting room?
Why are we made to wait days on end for surgery to help bring the pregnancy to an end?
Why are they so reluctant to administer more than fucking paracetamol when the pain is so significant?

Most importantly, can anyone suggest how we effect change in the treatment of women who've lost their pregnancies but wish to retain their dignity?

Thank you for reading and apologies for the essay

That last paragraph where they were mocking you is making me enraged right now!

Shocking that more

Posted too soon*

Shocking that more people have had such dispassionate and unfeeling 'care'. How can anyone working in this area be content to read such stories

It was many years ago (2011 / 2012) when I had to attend EPAU and I remember one of the nurses almost in tears telling me this was the only clinic in the surrounding area and they had to refuse walk-ins. Everyone had to come via their GP. Even then they didn't have the staff and the resources. The nurse said EPAU's are one of the most underfunded but also oversubscribed services.

I was lucky as everyone I encountered was kind enough (several losses, thankfully no complications but also not much they could do for me either. They always saw me though. I was also under the recurrent miscarriage clinic attached to the EPAU). EPAU was thankfully away from the main maternity unit.

This was a decade ago. I can't imagine things have improved much.

I'm sorry you have suffered so horribly @DesignerRecliner and I echo PP who say you need got to PALS and your MP and even your local press if you feel up to it.

I feel for you OP, almost everyone I’ve encountered in the course of my miscarriages has been lovely. I’m another who’s had tissue removed from her cervix with forceps while haemorrhaging in a bay in A&E and agree it’s really traumatic. I haemorrhaged again with the next one, and one doctor stood there watching me struggle to breathe my way out of a panic attack while hooked up to a drip and blood transfusion in resus - even just putting a hand on my arm would have really helped me feel less alone. A different doctor told me I’d ruined my jeans when he came in, followed by letting me know I was having a miscarriage (no, really??) he then decided I’d stopped bleeding - I continued to pass clots for quite a while after that and had lost about 1.4l of blood by the time they took me up for emergency surgery. However, those are only 2 in a cast of many, and overall my experiences with NHS staff have been compassionate, kind and practical. I wish that level of care was more common than it sounds from other people’s stories.

Oh yes, the EPU I was with had a separate little waiting room if you wanted to be away from all the people with their good news and happy faces. That really needs to be a thing everywhere.

You poor thing. This is awful.

@DesignerRecliner I'm so very sorry for your loss & the appalling manner in you were treated throughout this. The lack of professional support, compassion & adequate pain relief is unacceptable.

You can also complain to the hospital gynaecology service clinical director/lead consultant & the lead nurse. Ask PALS for their contact details.

NICE guidance on miscarriage management (2020) mentions 'giving advice on analgesia' only in the expectant management section
cks.nice.org.uk/topics/miscarriage/management/managing-suspected-miscarriage/

This guidance could definitely be improved in terms of advice to professionals on the consideration & provision of adequate/prescribed pain relief nice.org.uk/get-involved/contact-us

If you want to approach those involved in the provision of professional education & resources contact the Association of Early Pregnancy units (AEPU) [email protected]. Interestingly, when you click on the professional standards tab none open!

You may find the information here useful in answering any questions you may have about what happens next rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/early-miscarriage-patient-information-leaflet/

Take care of yourself

@Rosebud21 thank you so much for the links and information, I'll look into all of these in detail

@DesignerRecliner also Healthwatch gives good advice on making a complaint here www.healthwatch.co.uk/help-make-complaint

@DesignerRecliner

clickable links

cks.nice.org.uk/topics/miscarriage/management/managing-suspected-miscarriage/

www.nice.org.uk/get-involved/contact-us

www.aepu.org.uk/

www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/early-miscarriage-patient-information-leaflet/

My heart goes out to you.

You're right, having been there myself twice before, it's really shit and needs to change. Women are continually let down around pregnancy, pregnancy loss and childbirth. It needs to change.

I was lucky to not have an experience anywhere near as awful as so many here. I did have to go to my local epu though with bleeding early in pregnancy. The waiting room was shared with maternity day assessment so I was surrounded by heavily pregnant women rubbing their bellies and talking about their pregnancies whilst I was just trying not to cry

I’m so sorry you’ve been treated so appallingly. If your trust has a ‘voices’ panel (ours invites members of the public/patients to give feedback and feed in to how services are developed etc) then I’d urge you to become involved if you can. It’s the only way we can affect change. I had a bit of a shitty sonographer during one of my losses but I was extremely fortunate to have received amazing care during my time at my local EPU. Sadly there seems to be massive inconsistencies across the NHS. Maternity services are hugely underfunded, particularly pregnancy loss and it really does show. I’m glad you’re under a Tommys clinic, I really wish for your success in the future ❤️

I’m sorry and feel so angry on your behalf.

What compounds it is all this supposed focus on women “believe her” “me too” “be kind”, the silly ads on the tube reminding “people” not to stare. It’s all lip service because when it really counts, when we are at our “worst” and really need kindness, we are treated like we are hated. Often by other women.

I’ve had similar experiences involving being mocked. All by women. “Our NHS” - is broken, a joke; better off going private. Doubt they would dare mock then.

So sorry you are going through this. It’s shit. The NHS is shit full stop. Change is needed.

It really does.

Sitting looking at happy couple gazing at scan photos when you know your baby is gone is it’s own special kind of hell.

Then again, when my first was in NICU and had a slim chance of survival, I couldn’t walk there after my section and all the staff were too busy to even call the unit to find out for me if he was still alive, I was left on the postnatal ward with women and their babies. They wouldn’t even let me pull my curtains so I had to watch everyone else with their babies while I didn’t know if mine had survived.

That has no place either and measures should be taken so it doesn’t happen. I’ve heard too many women tell that same story and it’s so wrong.

(He’s 20 now by the way and is wonderful).

Maternity care in the UK is shocking.

We found out I'd had a MMC at 20 weeks last year. They made such a big song and dance about how much support we'd get (support worker, funeral, genetic testing etc) but in reality, we had very little follow up afterwards (apart from the community midwife and health visitor who kept trying to book an appointments with me despite me telling them I'd lost the baby multiple times). After chasing for the postmortem results, we finally got them 5 months later and told the consultant I was already 7 weeks pregnant again. She promised multiple extra scans, consultant appointments and all manner of things ... I had to chase my 20 week scan up yesterday because it hadn't even been booked and I haven't seen said consultant since the postmortem.

I'm sorry to hear of your story. I'm lucky, I guess that I never had horrible waits. Thankfully it was over and done with quickly but I agree that the NHS in seriously lacking when it comes to maternity and miscarriage services.

I agree, it's horrid. I waited 2 weeks 4 days for a D&C, which I had to push for as it had been terrible. I was literally flooding out blood, it was pouring out and they didn't care. Part of this was I had to go back for a rescan a week after getting my first EPU scan to see if the dead fetus had developed. I was meant to be 11 weeks and the pregnancy was the size of just under 6 weeks. The sonographer said that it was just protocol and that I knew what had happened. Obviously she couldn't say officially. I already had a young child and it was so hard for care for them during this time. I remember seeing people and them saying "How are you?" And I would say yeah ok, because it's such a horrible thing to talk about. I just couldn't. When I struggled to get pregnant again the D&C was on my mind, but I needed to regain my health, took a 3 month course of iron and various vitamins and put ttc on hold. I did have a second child after a big age gap and OP I wish you all the luck in the world.

Firstly EPU isn't open at the weekends. Secondly you won't even get a Monday appointment if you happen to have an issue at the Weekend. I had to wait until Wednesday. It's all shit. Don't get me started on inductions and not telling you it is more intense than naturally going into labor.

Honestly the NHS always try to put you off things to save money. I get it, but it's hard to push when you are so emotional and fragile.

I am so sorry for your loss and what you have been through. A few years ago I had a mmc that was found on a private scan at 9 weeks I felt something wasn't right so paid for a private scan and they couldn't find a heartbeat.

That was on a Saturday and on Monday morning I called epu expecting them to say come in and we can start to talk about treatment, next steps etc. no - couldn't see me till Friday unless I started bleeding heavily.

5 days might not seem like much buts it's a lifetime when you are losing your baby.

I am lucky that I have private medical coverage with work. On the Monday night I saw a private gynae who added me to her surgical list for Wednesday.

When I did get pregnant the next time (after another miscarriage) - I spoke to my midwife who was extremely sympathetic but in essence their is a sentiment that before 20 weeks there really isn't much they can do.i get that but all we want when we are going through the pain of a miscarriage is not to face even more delays for treatment or care.

OP - I’ve been through something similar 30 years ago. It’s depressing to hear things are even worse! I remember getting out of bed, and standing on the landing with blood pouring out like someone had turned the taps full on. I was hysterical because I thought I was bleeding to death - my 3 year was standing watching!

Anyway DH took me to A & E (no EPAUs then). They refused to believe I was miscarrying, and insisted on a pregnancy test. They exclaimed quite loudly at how surprised they were, that the test was positive! I can’t remember how I got to the point of a doctor pulling large lumps of clotted blood out my cervix; but it was excruciating! No pain relief! She made a right mess of trying to get a cannula in my hand - my husband couldn’t bear to go for a blood test after that; and he was only watching! They gave me a transfusion of haema cells (?) while they sent blood off for cross matching for a transfusion - which they lost!

I was sent to a ENT mixed sex ward, while waiting for the ERPC - it was acutely embarrassing having to talk about the miscarriage to a nurse, when there was a man in the next bed! She was told to clean me up before going to theatre - but she turned away, looking sick, so I did it myself. I got the ERPC sometime that night!

I was particularly exhausted after that miscarriage for several months, and couldn’t help thinking if I had got the blood transfusion I might not have felt so bad!

I came to the conclusion that doctors don’t give pain relief, because they have to pay for it themselves! Certainly a complete lack of compassion or empathy!

On a completely different matter; I was in A & E a few weeks ago, as a relative and saw the complete lack of pain relief for hours - so nothing has got any better!

I'm so sorry you're going through this.

I was incredibly 'lucky' in that the care I received was amazing. A dedicated room away from all the babies and pregnant women, baby was baptised, access to counselling and very thorough investigations into why it happened. Every single person who dealt with me was clearly very well trained.

It was only afterwards that I realised this isn't the norm and it makes me so sad to think what people go through. My experience, even with faultless care, was traumatic. I can't even imagine it with shit care.

I am so sorry for your loss, OP, and so sad to read the other stories on this thread.

I don't think it is just the NHS - care for pregnancy loss is generally awful. Pretty much any country you can name, care for pregnancy loss will be worse than the general standard of care. It's awful.

I hope you feel able to complain and keep complaining (but please don't feel bad if you just can't!). I think it is the only way things will change.

YANBU - I had to wait for hours in A&E heavily bleeding and in so much pain I couldn’t sit upright with my first miscarriage. DP wasn't allowed in with me because covid. It was treated so matter of factly like a sprained ankle when it was essentially a bereavement. The second and subsequent losses I didn’t bother and just stayed at home and dealt with it myself. Thankfully none were mmcs, my body is efficient at expelling things.