No idea how awful miscarriage would be and struggling.

[Faybells]

Hello all. Fairly new here so please bear with me. This also a graphic account of what happened during my miscarriage. Please dnt read any further if you would find this upsetting.

I had a miscarriage 2 days ago at 11+5 weeks pregnant. Started bleeding v lightly on saturday. By sun arvo i was bleeding more heavily, and by mon arvo i had what felt like early labour contractions. They were very painful, coming every 2 mins and lasting 30 secs at a time. After about 3 hours of that i felt a 'pop' and a gush of blood. I then sat on the loo for over an hour with blood and large clots pouring out of me. We called the out of hours gynae ward as early pregnancy ward closed by this time. They adv go to a&e. I spent 3.5 hrs there having what felt like contractions, bleeding heavily and passing large clots in front of a packed waiting room. It was so distressing and i was devastated to think i might be passing my baby into the toilet in a&e and flushing it away. I briefly passed out 3 times but was given no assistance and my partner had to try to support as best he could.

I was admitted and collapsed on arrival to the ward. I vomited when i came round. I had low BP with all the blood loss. They put me on a drip and a doctor performed a D&C (i think) - basically removed what he could there and then to try and stop the bleeding. I had not been given any painkillers up to this point. The ward staff were lovely and were concerned about this but could not wait to do the D&C.

Anyway. I felt much better after this, and the care on the ward was wonderful. They were sensitive to what was happening and I finally got painkillers and the drips helped my BP. The doc had found my baby during the D&C and they gave me options on what we should do with it now. We chose to let the hospital cremate it which was a relief as i was so scared i lost it in the a&e toilet!

After a sleepless night on the ward a scan showed the miscarriage was complete. I had another examination to remove a final blood clot and was able to go home with some iron tablets and painkillers.

I am now struggling to come to terms with what happened. I think i have come to terms wirh losing my baby. I cried and grieved for it during the first few days of the miscarriage which were quieter. But now i am findinf my thoughts preoccupied with the events at hospital. Particularly the lack of care in a&e. I felt they staff did not acknowledge what i was going through, the pain i was in (no painkillers offered!), the blood loss i was suffering or the emotional distress. I am also shocked still at the blood loss. I gather this is quite normal to pass a lot and for the blood clots to be large. But i had no idea it would be so gruesome and i found it incredibly distressing. I keep replaying it all and wondering if i overeacted and if I should have just stayed at home and if this happens to everybody etc. etc. And how on earth did i have no idea?? I have a friend who had a miscarriage last year and she has been a wonderful support. But i had to apologise for not understanding until now exactly what she went through.

I am sorry to describe it all in detail here, but i feel i needed to share it to help deal with it and to see if others could share their experience. Its all very raw at the moment and im hoping it will get easier.x

[Stealthpolarbear]

I'm so sorry you lost your baby :(
Your 'care' in A&E sounds horrendous, I'm glad it did get better

[slightlyconfused85]

I'm so sorry Faybells that sounds like a dreadful experience. I miscarried last year and was overwhelmed by the blood loss, pain and trauma, I had no idea either. I was spared the hospital experience and it sounds awful. On a happier note I am days away from being due baby having fallen pregnant soon after the miscarriage and all has been fine so far. I also signed myself up to do a 10k next summer for the miscarriage charity which will raise money and hopefully some awareness of this awful thing that so many women experience.

[tribpot]

My sympathies. That sounds like an unnecessarily awful experience of miscarriage.

I appreciate this will not be uppermost in your mind at the moment but I do think you need to give the hospital some feedback. This is not an adequate standard of care and they need to be told so that they can improve. You can use a site like Patient Opinion when you're ready.

On a practical note, please don't assume that because the miscarriage happened in hospital, the maternity team have been informed and routine scans and appointments cancelled. Could your DP phone the GP surgery and the maternity team for you?

I hope you feel physically better soon. Have you been advised on any support services? The Miscarriage Association might be worth a look?

So very sorry for your loss.

[Faybells]

Thank you everyone...and thank you tribpot for the links and practical advice. I had started to wonder about future appointments etc! I had considered complaining, partly why I posted on here as I wasn't sure what I should have expected. I did train as a nurse (although I eventually chose another career) so respect the NHS and pressures on staff . but what happened in a&e will stay with me forever and I feel really let down. I also was not offered any leaflets/advice/help services when I was discharged. I though that was strange! I know how to find these I guess (&appreciate the links,thank you) but surely people need this info after a miscarriage/procedure in hospital?

Anyway. Thank you so much for advice and support. At the moment I am learning that talking helps...so glad for places like this where we can share experiences :-)

[tribpot]

Yes - you might be interested in the Mumsnet Miscarriage Code of Care - you were let down on a number of the key points from that manifesto. I don't know what active campaigning Mumsnet is doing at the moment but I will certainly be tweeting my local hospital later to find out if they are compliant with it.

I suspect the reason you didn't receive better care and proper post-discharge support is because you were on a general medical ward and they weren't aware of what the hospital's miscarriage processes are. I work for the NHS too (although not front line) and I understand why people feel that complaining just adds to the workload of an overstretched hospital, but services can't improve without feedback, and better you than a damning report from the Care Quality Commission. They really need to do better - imagine if you were 16 or perhaps didn't speak English as your first language, you could have left hospital with no clear idea of where to get information and advice. And would also be far less likely to give feedback - so if you need further incentive, do it for those who are less able to speak up.

Only when you feel ready of course!

[Faybells]

Thank you tribpot. The mumsnet miscarriage code of care has really highlighted where we felt let down and where things can be improved. I am relieved to have read it - it has helped me feel justified in my feelings about what happened. I will definitly complain/give feedback - you are absolutely right..i have had a great deal of support in dealing with what happened and know where to go for advice etc. I keep thinking about those that might not be as lucky as i have been and how they would cope in this situation. So it is important to give this feedback and help improve the services for miscarriage care....especially out of hours.

I have been up and down since it happened - very low and teary yesterday, but feeling positive and upbeat today. Im sure it will carry on like this for a while but i feel confidant we will get through it.

Thanks so much for the advice and support. It has been fundamental in helping me make sense of it all. Thank you.x

[mummy0bummy]

I don't have any further advice OP but I wanted to say that I'm very sorry for your loss

[ChazzerChaser]

Faybells my experience was very very similar to yours. 3 hours in a and e with no help, eventually sent to another hospital by a student nurse who couldn't even tell us which wing we needed. We asked her to check info 3 times but then had to go it alone. Then an 'examination' which turned into a non consensual painful removal of stuff, which was then chucked in the bin and had to be retrieved. The miscarriage itself was no picnic, but i was also haunted by what had happened at hospital. And speaking to others involved in birth/pregnancy there's no surprise.

This all happened pre election, so I lobbied my candidates to sign up to the mumsnet miscarriage campaign. The Tory who got in never got back to me so I don't know what happened. Miscarriage care is appalling. Yet it's such a common event in women's lives.

[MewlingQuim]

I'm so sorry for your loss and your experience at the hospital

I have had several mc ranging from 5weeks to 12 weeks, and my experience of the 12 week mc was very similar to yours. I was also shocked by the blood loss and DH got so freaked out that he called an ambulance. Sadly I think the paramedics see people in similar situations (and far worse) so they were emotionally fairly unmoved by what was, for us, a very traumatic experience, but I bear no grudge towards them or the A&E staff who were similarly competent but unmoved. IME the trauma of miscarriages is one of those things that people have difficulty understanding unless they have been there themselves.

[tribpot]

MNHQ have been in touch to say they will give an update on the campaign on this thread over the next couple of days. There's clearly an awful lot still to do.

[Faybells]

Wow.....i am amazed to read the further comments since my last post. And feel close to tears.... (one of my teary days today i feel!) As upsetting as all our experiences have been, i am comforted to know that i am not alone, and again, feel further justified in how let down myself and my partner feel. I am so sorry for all your losses, and the terrible experiences you have had. But i am so grateful for this discussion board and the support i have found here. I cant thank you enough.

Thank you tribpot for the update...i will eagerly await info from MNHQ.

Also...could you tell me how i can get further involved in the miscarriage care campaign? All i could find on the page was options to share via social media...which i am not quite ready for yet! Only close family and friends know what happened and i am not ready yet to answer questions about why im supporting such a campaign!

Thank you again everyone x

[Blueskies80]

So sorry to hear your experience.

I had similar bad experience with a mc at 11 weeks. Had to wait three hours to be seen having gone in at midnight. Couldn't sit down for most of wait as blood gushed out of me (filling pad every 20 mins or less) On a and e ward largely left by myself without pain relief until I was told I could go home but was given option and decided not to as needed scan in morning (5am).. Started passing chunks of stuff, had to stagger into corridor to shout for help as was about to pass out (dh had gone home to rest).. Blood pressure was really low so went on a drip. Had horrid exam where they removed bits of placenta. Ugh that will stay with me forever.
Was taken up to epau when bp stabilised and was told I was last in queue and a four hour wait. I sat there in blood splattered clothes and cannula for 1.5 hrs before kicking up enough of a fuss that l was seen. Then doc was v sympathetic and it was an emergency eprc for me. Then a five hour wait for a bed on ward. Then a few hours delay for the op- we turned back aftr they wheeled me down the corridor to go to surgery.
Then discharged with out of date antibiotics.

I did complain about the drugs being out if date and the head if ward phoned me to apologise and I took the opportunity to provide more feedback. It did take it off my mind to an extent. I feel that mc care is woefully inadequate - in effect we just tell women to get on with it and offer no real assistance. I am sure if men had to deal with this situation there would be a department providing specific support to those undergoing miscarriage.

[Faybells]

Blueskies80 im so sorry - your experience sounds horrific and im dismayed that it is scarily similar to my own. I was hoping that perhaps we were unlucky to have received the treatment we did in a&e. I am so sad that this does not seem to have been a one off and others have such similar experiences. I have since spoken to a friend of mine who works in a&e and she is appalled that my blood pressure was only taken once in 3.5 hrs despite my obvious heavy bleeding and episodes of passing out, that there was no pain relief or privacy, and that not one person offered their condolences. There are a number of other issues which i will be raising when i give my feedback/complaint.

However, i do feel that men go through this too, ans actually, i think their needs are in danger of being totally ignored....my partner had a horrific experience as was left to cope with me in the waiting room on his own, helping me through the contractions, trying to bring me round when i passed out, helping me to the toilet, cleaning me up, cleaning up the toilet & disposing of the pads (as no appropriate clinical waste bins in the a&e loos). He really had a very scary experience & when he alerted reception to the seriousness of my condition, was told we would be seen 'shortly'....or the porter would be here 'shortly'. Each time, 'shortly' translated into an hours agonising wait. He went on to support me through a very gruesome procedure when the doc removed the baby/blood clots - although the staff on the ward were very kind and actually took great care of us both, since we were discharged we were not given any leaflets or advised of any support services...we have both just been sent home to get on with it. I have found great support here but my partner is very quiet and i know he is trying his best to carry on as normal but it has been so hard on us both.

I really feel that the staff (medical & reception) simply had no idea or sympathy for what we were going through....the physical problems i was suffering through loss of blood or the emotional distress. We were shown no kindness at all in 3.5 hrs....not one person acknowledged the fact that we were losing a baby and offered an apology ir a kind word...there was no privacy....no help for my partner....and since we were discharged, no leaflets, support or information for us to move on from from this.

I am feeling stronger and putting together my thoughts about what happened so i can give strong feedback/complaint. Things absolutely cannot carry on this way for miscarriage care.

[tribpot]

Such sad, and again unnecessarily distressing, experiences. Obviously nothing could make a miscarriage not awful, but the lack of appropriate care is dreadful. I get that lots of people come into A&E in pain and distress but this is a different kind of distress and should be recognised as such.

Will await advice from MNHQ but my plan was:

• tweet my hospital to ask if they are signed up to the Code of Care (following up by letter as I am a member of the Trust, as anyone from the public can be)
  
• tweet my MP to ask him to lobby the Trust and raise the profile of the campaign in Parliament
  
• tweet my local CCG, since they are the ones who ostensibly commission care pathways and thus should really be the driving force behind commissioning better care (compared to the PCT I find them to be disconnected from their patients and not particularly bothered about anything except a glossy annual report - time for them to prove me wrong!)
  

I wondered if MN might then want to have a bit of a media push - probably not as we go into August but maybe in the autumn. I wondered if The Pool might be interested in featuring it.

[ChazzerChaser]

I also wondered whether this kind of stuff could be added to the campaign. There should be a clear pathway through a and e. During my 3 hour wait it seemed they had no idea what to do with me. Once we managed to find the ward ourselves, they knew what to do and were pretty quiet. Why did a and e not just send us straight there? Or why did the early preg unit, who told me to go to a and e, not just send me to this ward? If it ever happens again I'd just turn up to this ward and hoped they'd take me. Clear efficient pathways could be something added to the campaign I think. It should be simple.

And I really think mumsnet should shout about this miscarriage stuff. It's so common yet I see so little campaigning elsewhere. Mumsnet are so well placed to make a difference.

[tribpot]

I had a look at the existing NICE care pathway this morning - a warning for anyone who has recently miscarried, you might find this rather 'clinical' in both sense of the word, i.e. it is concerned (understandably) with managing life-threatening conditions like ectopic pregnancy, and is somewhat cold to read about what is a very distressing experience.

Delving a bit deeper into the management of miscarriage pathway, it clearly states:

Treat all women with early pregnancy complications with dignity and respect. Be aware that women will react to complications or the loss of a pregnancy in different ways. Provide all women with information and support in a sensitive manner, taking into account their individual circumstances and emotional response.

Healthcare professionals providing care for women with early pregnancy complications in any setting should be aware that early pregnancy complications can cause significant distress for some women and their partners. Healthcare professionals providing care for these women should be given training in how to communicate sensitively and breaking bad news.

Non-clinical staff such as receptionists working in settings where early pregnancy care is provided should also be given training on how to communicate sensitively with women who experience early pregnancy complications.

Information throughout a woman's care

Throughout a woman's care, give her and (with agreement) her partner specific evidence-based information in a variety of formats. This should include (as appropriate):
[I cut some stuff out here but you can read about it on the link]
Where to access support and counselling services, including leaflets, web addresses and helpline numbers for support organisations.

Ensure that sufficient time is available to discuss these issues with women during the course of their care and arrange an additional appointment if more time is needed.

After an early pregnancy loss, offer the woman the option of a follow-up appointment with a healthcare professional of her choice.

However, the bit of the puzzle that seems to be missing is how women can be appropriately treated in A&E. The top level pathway (my first link) just says where there is concern about the amount of blood loss or pain, refer to A&E. The end. (It does also link to the Essential requirements of care rather than just 'you're on your own, best of luck').

So a lot of it is there, just perhaps not strung together in recognition of the kind of experiences people have had on this thread. I wonder if the Chief Nursing Officer might want to comment in response to MN?

[Blueskies80]

That's useful to see tribpot.
I doubt many hospitals are abiding to those standards.
I was at a supposedly leading hospital (kch) and had those problems.
As a mc patient you fall between many stools, and you have to navigate yourself through the hospital system whilst in a painful and debhilitating condition, physically and emotionally. A and e don't seem to provide adequate care. Epau in my case doesn't give any priority to patients arriving from a and e (when they should in my opinion give priority to someone in medical need).
My point earlier was that there is no department for miscarriage or similar. Why is that? It's like the medical help is just there if you are pregnant and continue to be. Otherwise if it goes wrong, you're just meant to pick yourself up. I had similar post natal symptoms after my mc than my birth yet absolutely no follow up (who would that have been with,anyway?).
Its a shocking way to treat women and their partners. Hope mumsnet can get on the case. It's such a hard subject for women to argue about as its deeply upsetting and personal and I can imagine people try to move on and not talk about it, so even for those who have gone through it, campaigning and complaining about their experience is not something they would want to do. Hope mumsnet can take up the cause!

[Faybells]

Thanks for all the research tribpot...
i will definitly be looking into this and following the same routes as you with regards to contacting hospital re. Code of care, MPs & CCG. It is interesting about the a&e situation as i really feel that was where our 'care' fell desperately short of what was required.

Thanks you for looking into this....it has really helped me figure out what i can do and where i can go with this. Having a few more weepy days and my determination is fluctuating! You have all been amazing at helping me keep going.

Xx

[Flen]

Just chipping in to say I think any communication of lack of care is vital. I have had three miscarriages so far and the care has been hugely mixed, I am so saddened to read that other women have been treated so poorly. I am currently 6 weeks pregnant and began bleeding this week, I went straight to my EPU but they refused to scan me saying that NICE guidelines only allow one scan a week (I had had one five days previously as part of my pregnancy support plan). This struck me as crazy, especially since the room in which I was examined had a scan machine right next to the bed!

I have written a blog about miscarriage which I will paste below - I think it can be helpful to know that other people have felt similar feelings. We really are not alone.

[Flen]

thingsaboutmiscarriage.wordpress.com/about/