Is this a normal way to be treated by NHS when pregnant/miscarrying?

[PoppyJ1]

Hi, I would like some advice, please, on whether my experience of early pregnancy and MC and the NHS handling of it is to be expected. I am seriously considering going private next time due to mixed messages, poor communication, lack of knowledge among docs.

Monday 21st: BFP. Excited but little nervous as I have CAH, which includes slightly higher MC risk.

Tuesday: Contacted GP, was made to tell receptionist why. Saw GP was asked if I would allow student to sit in, said no, not this time please. Told the very young GP I have had diarrhea for a week, have just returned from malarial area and have higher MC risk due to CAH. She didn't know about CAH and said she'd have to get her supervisor to call me back about the malaria angle (this never happened). She sent me for a urine sample and I found the male student standing right outside the room smiling at me. GP was unable to give me a due date because CAH causes irregular periods. She didn't know whether I was 4 weeks or 9 weeks and said there was no way to be sure yet. She said "Oh we could check your HCG levels over 48 hours, oh no actually that's just to rule out MC/ectopic." She found white blood cells in my urine and said that means traces of blood. She referred me to St Georges EPU and told me to "just enjoy."

Called the endocrine dept at UCLH, which manages my CAH. They were lovely and moved my existing apt forward.

Thursday afternoon: Started getting period type pains, ovulation type pains and migraine. Called GP, got an experienced doc. She told me to go to EPU walk-in for a scan, fill my bladder. Knows nothing about CAH mc risk.

Friday: EPU nurse tells me to empty my bladder. I told her I was told to fill it, she said "disregard what you've been told, this is how we do things here." Get transvaginal scan, nothing to see. Midwife writes PCOS on my notes, I correct her, it's CAH and mention MC risk. She knows nothing about it. I ask her a lot of questions, she interrupts me more than once and tells me to "let her lead the conversation." She answers my question, yes it would have implanted by now. Tells me I have PUL. She gets me to take a blood test, come back for another in 2 days then call in for results. Tells me pains are normal. Tells me to get stool sample for diarrhea, lectures me about the malaria risk.

Afternoon, separate midwife calls from EPU to arrange booking apt. Knows nothing about morning events.

Sunday: Start spotting. Tell doc at Acute Gynaecology which does the bloods for EPU at weekends. She tells me it's implantation bleeding. I ask isn't it a bit late for that, she says no. Tells me if there's something wrong there's nothing I can do anyway so just go home and relax.Start bleeding, now sure it's MC.

Monday: More bleeding. Call for results. Midwife who does scan has no idea who I am, asks for my dob three times. Then simply says "Your hormone level on Fri was low; 94, usually 2000 at that stage. Then it went down to 80 so very early MC. Take a test in 10 days to make sure negative." Nags me about getting a stool sample for the diarrhoea at another hosp, I tell her I'm a little too devastated to deal right now and I can't face another hosp. I ask if I have further increased MC risk now, she says no. I ask how long I should wait to try again, she said wait for a period. I say mine are irregular she says "oh just wait for neg test." I mention I have booking apt scheduled for Sat, she offers to cancel.

Call endocrine at UCLH, service manager is lovely to me asks if I have anyone at home, etc. (The only person who showed any concern). Boyfriend and mum out of turn but I tell her I've got support on the phone.

Two hours later another bouncy happy midwife calls to discuss booking apt, have to tell her about MC. She apologises and says she wasn't informed by her colleague.

Monday night: terrible pain and lots of bleeding. No one at any point told me how painful it is physically or gave me any advice on how to handle it.

Now: Decided to call in sick, still bleeding but pain subsided.

I know I'm upset and maybe lashing out a bit, but, apart from the lovely staff at UCLH, I can't help thinking they could all have handled this better.

[sarahnova69]

I'm sorry you're going through this.

I don't know most of the acronyms in your post but it sounds like you have quite a rare condition which interacts with pregnancy? In that case it's not surprising that your GP and MW didn't know much about it - in either case they would have to refer questions to the relevant specialist, which would be your team at UCLH.

Your care does sound fairly typical IMO, yes. Unfortunately early miscarriages like this are very very common and if it's as early as it sounds like it was from your HCG levels there's basically nothing the NHS can do - scans don't help or give any information really as it's too early for a heartbeat.

In an ideal world yes the various specialties would be more joined up and supportive but in a world where they are all badly overstretched that isn't very feasible, and a lot of this happened quickly and over a weekend so info couldn't have been easily shared.

It sounds like a few practitioners could have been more sympathetic, ideally, but yes, this is probably what is to be expected on the NHS. Women can respond very differently to miscarriages, some can manage the pain and prefer to go to work, others don't. For a later miscarriage they would probably have given you more painkillers/advice.

[Barefootcontessa84]

I'm sorry for your loss unfortunately there is nothing anyone can do in early pregnancy to stop you miscarrying, and at such an early stage it really is more of a watch and wait, regardless of how much you can try and control the situation. I'm not sure what else you were expecting from the HCPs you had contact with, but the outcome sadly would have been the same even if you thought they had been fab. I think perhaps you're being a bit too sensitive over full/empty bladder issue etc - the EPU knows what they're doing so best just to follow the instructions, even if the advice from the GP was different - a quick pop to the loo isn't the end of the world. For future reference early transvaginal scans are always empty bladder. In terms of your diarrhoea issue, although you are going through a MC, I would also urge you to get it seen to, especially since it was you who was particularly concerned to start with due to malaria risk.

[LuchiMangsho]

My sympathies. I think the one thing they could have handled better is the CAH bit and also the midwife calling about the booking in appointment. The rest, I say this gently, is v v standard. There isn't much they can do so early on. Having been there and done that I don't even go to my GP now till I have had an early scan at 7 weeks-ish privately and seen a heartbeat. Otherwise you end up in the system and having to deal with it when you are heartbroken. The pain thing...again is very individual and I miscarried at 12 weeks and had very little pain (had a D&C at 14 weeks).
I think they handled it as matter of factly as they could. I like that personally (tell me the worst case and let me be) but I can see how that might be upsetting. In a system as vast as the NHS unfortunately (and again I mean this nicely) they see thousands of early miscarriages. Our EPU wouldn't even see you that early. You would be told to go home and wait it out really till you got a negative test.
I think what it comes down to is this. For an individual woman each pregnancy is huge and personal and comes with a myriad of feelings and hopes. Unfortunately in a vast government bureaucracy that kind of personalised care is not possible.

[bobbinpop]

I'm so sorry for your loss. It sounds like you've had a horrible experience. My experience with the Nhs, particularly antenatal care, is that there is a lack of effective transfer of notes and communication. There are some brilliant midwives, and some who make you feel awful at a vulnerable time. If you can afford to go private, I would do so, as you may be able to find a specialist to help you.

[QforCucumber]

So sorry for your loss. It is awful, i have experienced it myself - take time to process it dont rush back into everything.
Form what i gather your CAH is a rare condition and even the most experienced of GP may not have knowledge of it, i know youre emotional but the age of the GP is irrelevant here. The term of a pregnancy is based on your last period so she is right, she wouldnt know the term until you had a scan.
Referral to EPU is normal, scan to determine the gestation. An abdominal scan requires a full bladder, trans scan requires it empty, GP wouldnt know which theyd offer until you got there.
Midwife who called ref booking appt is usually a community midwife and as you wont have had any pregnancy notes yet this may be why she was unaware of your visit to the hospital at the weekend.
Again they are correctin saying to wait until negative test before starting again, this way you can try to determine gestation again.

Hope my explanation clears some of it up for you. They are stretched and i can see why youre angry and looking to place blame, but at this stage its not yours or anyone elses fault.

[griffinsss]

I'm so sorry to hear about your experience, OP, and that you're going through it without support. I had an awful experience 7 years ago when I miscarried the first time (at 5 weeks I was just told I was miscarrying and sent on my way. The second time it was 13 weeks and care was a lot better) and I would have hoped that care would have improved by now.

[christinarossetti]

What a hellish week for you, both physically and emotionally.

My advice would be to speak with your specialist for CAH about what you should do when/ if you get pregnant again or exactly who you should contact and when.

Otherwise, you do get thrown into this huge, disjointed and very matter of fact system, just when you're at your most vulnerable.

Get your stomach problems diagnosed and treated when you feel up to it, and rest up for now.

Take care.

[ThanksSpanx]

The GP who you discussed your CAH with should have referred you to someone more knowledgeable in the practice or asked you to return once she'd made enquiries about how to manage your pregnancy IMO.

I'm a healthcare professional and would have followed up on this without a doubt.

Communication between various NHS services can be hit and miss- I'm not saying it's good but not unusual.

If you weren't looked after with care and compassion by a HCP I'd certainly feed that back via PALS.

I'm sorry for your loss. Maybe try to focus on yourself and your recovery for a while and then address the shortcomings in your NHS care

[PoppyJ1]

Hi all, thanks so much for taking the time to read my long post and for your detailed replied. Sorry to hear about all your bad experiences too.

I know the outcome would not have changed, I'm not seeking to blame anyone for that. I was just surprised about the differing instructions and lack of practical advice. Just spoke to my mum who worked as a social worker in a hospital here and she was surprised at how insensitively it was handled and how little advice I got.

The good thing is that the UCLH team were amazing and they're the ones I have to deal with consistently. They are going to see me in two weeks and check my hormone levels and see what's going on and hopefully work out if there's anything I need to do to manage my condition, which basically interferes with progesterone and other hormones so can cause problems, but not necessarily.

The pain has stopped now so I guess I just need to rest and recover.

[ThanksSpanx]

I'm glad UCLH are so on the ball. I've a friend with a genetic condition who's pregnancy was managed there and they were beyond amazing.

You've done well to remain positive and balanced about your current situation. Very best of luck for another BFP soon

[LuchiMangsho]

I think the differing instructions were a result of the GP not knowing what scan you were having. I have gone for a 36 week scan with a full bladder and then had to empty it half way through for a TVS one.
Also the GP was being rightly cautious about dating your pregnancy. The only accurate way to do that is with a dating scan.
Also again honestly speaking there isn't much practical advice to give this early other than do take pregnancy tests to see when you get a negative result.
This is not to say the NHS is flawed but other than a slight confusion over appointments I really don't know what else they could have done. UCLH seems to have done their bit and that seems to be the only bit where something concrete could be done this early.
I have had late miscarriages and births in London hospitals (and I am in the midst of such a high risk pregnancy I have been told matter of factly to expect neonatal death and/or a hysterectomy). Always treated professionally even if people don't always have the time to sit and chat with me or offer 'advice' per se- even with the scary stuff they have told me. The medical/clinical management is always fine but honestly speaking they do expect you to get on with stuff (horrible as that may sound).

[AliceThrewTheFookingGlass]

OP first of all I'm so very sorry you're going through this.

I don't think the care you received was bad, personally. You managed to get seen at the EPU very swiftly for an early scan and at that point with no bleeding. Compared to my own experience of trying to be seen by EPU and the experiences of many on here that's pretty good.

Telling you to fill your bladder is normal. With an abdominal scan you need a full bladder to get a clearer look. With a transvaginal scan you need an empty bladder. Your GP wasn't to know which scan the EPU would give you.

I'm not sure what CAH is but I understand the frustration of HCP not knowing anything about a medical condition you have. I had hyperemesis in my pregnancies, which I thought was fairly common and would be known about. I had to explain exactly what it was to every HCP I dealt with. They had no idea.

No GP will date your pregnancy at a standard appointment. All they can do is guess based on your LMP until a dating scan is done. That's completely normal.

Women are usually told to wait for another period before trying because it's easier to make a guess on dates that way. If for whatever you don't have regular period then it would be fine to try again without a period in between once you get a negative test. Again this is standard advice.

I do absolutely agree that you should have been told what to expect and how to manage it though. I feel very very strongly about the lack of information women are given when going through this. When my second MC was confirmed by a scan I told the nurse who took my bloods after that I was having intense pains. I was sent home with leaflets about my 'options' and told the pain and heavy bleeding was normal and to take a paracetamol. The pain wasn't normal. It turned to proper contractions and nowhere in any of the leaflets did it say that this could happen or what I should do if it did. Thankfully my gut instincts told me to go back to hospital because when I got there I was rushed into a side room and had to have the pregnancy removed there and then under just G&A. It had gotten stuck in the neck of my womb causing me to haemorrhage. I was told had I gone to bed instead of coming in like I very almost did then the chances are I would have died because I just wouldn't have stopped bleeding.

I'm sorry you have little support poppy. When does your mum or partner return? X

[Potnoodlewilld0]

Sorry for your loss poppy

Sorry for your introduction in tothe NHS maternity care as indeed it can be shite. If you can afford it go private next time.

I've undergone private IVF a few times and on the two times it work when I was signed over to NHS I landed with a bump. Miscommunication between departments and midwives massively understaffed and new inexperienced midwifes muddling their way through.

Your GP experience was crap too. I've been on one where she actually went on Google...

Miscarrages hold differnt pain levels, when I lost mine it was just like a period really so that's why they probably didn't warn you although I'm surprised you didn't get the 'take some paracetamol' line which seems to be a tag line in the NHS.

[PoppyJ1]

Thanks again, all. Sad to hear all these experiences, all traumatic and some really frightening.

Alice, my boyfriend is back on Saturday from overseas and my mum is back later today I think. My best friend has been wonderful and talked to me on the phone all morning, which has helped enormously.

And thanks Spanx regarding the next BFP. Needed to hear that!

[AliceThrewTheFookingGlass]

I'm really glad your friend is being so wonderful and you're finding talking helpful.

When I had my first MC I had no idea they were so common or why it had happened to me so I spent days reading up on them. One thing I took great comfort from was that the vast majority of first trimester miscarriages happen because the foetus isn't healthy, a genetic abnormality usually. I like to look at it as I suffered so my child didn't have to.

Like I said in my previous post I don't know what CAH is so I can't comment about the associated MC risks from that but I do know that you're not at a higher risk for future miscarriages because you've had this one. Both of my children were conceived after each MC. DC1 just two weeks after the bleeding started and DC2 was about a month. They are 3 and 1 now. 'Rainbow babies' are about as common as miscarriages are so please don't be disheartened about the future. You've been unlucky this time but there's every chance that next time will be different and your next BFP will stick, especially as UCLH are going to help you manage your condition.

Stay positive lovely

[lougle]

Sorry to hear that you've experienced such a difficult time. You did receive appropriate care, I think. The next step for you is to find out if you need to take any steps pre-conception to give you the best chance of staying pregnant.

[PoppyJ1]

Thanks, so much Alice. I'm definitely going to adopt the logic that this happened to me so my child wouldn't suffer. That's good advice. All along I've considered that it would be worse to watch a child suffer. I like to thing that wherever it is in the universe it will be born somehow, some day and have another, better go. Thanks also for the reassurance and for sharing your experience. Glad you had your babies after everything you went through.

[ifigoup]

As others have said, sadly the care you experienced isn't unusual. I've had multiple miscarriages and have often had the experience of going to an EPU for a scan to confirm I've miscarried, only to be met by a jolly nurse who asks how many weeks I am and whether I've started shopping yet. Or I've been phoned by midwifery team to ask why I've missed an antenatal appointment when I'd already miscarried and they hadn't been told.

In the end I did get big red stickers put all over the front of my notes, and I now know that in any future pregnancy I'll be under the care of a consultant from the start. You shouldn't have to, BUT it might well be worth your flagging that your CAH should be highlighted on the front of your notes, and that you should be seen by a consultant from 6/7 weeks.

Finally, are you a member of CAFamily, CAH Is Us, AHN or any of the other support groups? It might be worth finding out how other people managed their care providers during pregnancy. It absolutely shouldn't be up to you to do all the educating, but it is the sad reality.

So sorry you've gone through this, and I hope the next pregnancy will be a sticky one.

[AliceThrewTheFookingGlass]

Thank you poppy, I'm glad you've managed to take a bit of comfort from my posts.

I had better crack on with the cleaning now but if you ever fancy a chat or anything then you're more than welcome to PM me anytime

[PoppyJ1]

Thanks so much, Alice! You're wonderful.

Thanks ifigoup. You must have been through Hell, I'm sorry. It's that horrible feeling of having the knife twisted when you're already devastated. Good call on the support groups, I will look into that. Wishing us both future "sticky" pregnancies

[SunnyDayDreaming101]

My eyes are filling up reading through this post, we ladies really get the S..t end of the stick don't we?

Having gone through something very similar I feel your pain. Zero advice other than wait and see, no warning of the severe pain or to expect ww3 in my bathroom judging by the amount of blood, no warning of what it was like to pass 'the sack' I actually had no idea until it happened! How horrific.

Unfortunately due to the high number of early miscarriages, how overworked the EPU and NHS are and how desensitised they have all become they forget this is YOUR BABY! I ended up paying for private counselling to help me and I'm a strong person, it all just got to much though.

There is light at the end of the tunnel though and this will happen for you! I spent years trying to convince only for it all to be taken away from me. 6 months later I got a bfp, I'm now 19 weeks and feeling the LO move for the first time. I will always feel the pain of losing my fist baby but please know it will ease off, take the time you need off work (I had 3 weeks) and focus on the future xxx

[MoonlightMojitos]

I just wanted to say sorry for your loss, and yes the nhs are rubbish with mc from my experience too. I started bleeding heavily on a Saturday when I was 6 weeks, wasn't seen until the Monday as epu not open weekends, waited over 4 hours to be seen in epu once I got there, they were generally very insensitive and I felt I was just a number. They lost my first blood sample so I had to go back again the next day for another one (and then again 2 days after that for the repeat one). When I called my gp last month to inform them I'm pregnant again they had no record of my first mc at all and it was very confusing for everyone as the Dr thought I was 20something weeks still. I also agree they give you no warning about how painful and heavy the bleeding can be. On the plus side I am now 14 weeks again and everything is going well so I hope that gives you some hope.

Again, so sorry for your loss and I hope you get your BFP again soon, and better help with your condition. Good advice from above ref support groups and there is also great support on here for ttc after mc etc to chat to others going through the same. Best wishes :)

[PoppyJ1]

Thanks, SunnyDay, especially for your encouragement for the future. Sorry to hear about your awful experience. I wasn't as far along as you (not even at the sac stage) but I can totally relate to your WW3 bathroom point, so much pain and blood and such a shock.

Congratulations on your pregnancy, how wonderful it must be to feel those kicks! All the very best to you x

Moonlight, what a shambles regarding the tests, that's like a worst nightmare when all you want is to know whether you've lost your baby or not. And for your notes not to be updated either! Congrats on your pregnancy and all the best!x

So my boyfriend has really come up trumps. He's bought me Bupa cover and booked a snuggly night in a country hotel for when he's back in a few days, with log fires and mulled wine to give me a change of scene. "But I can't have sex," I wailed. "Honey, that is really not the reason for this." I should have given him more credit, really, but it's funny what pops into your head when you're upset.

Went back to work today; might have been a bit early cos I'm still sore walking upstairs and carrying shopping. I had only told family about my pregnancy and creepily one of my contacts rang me and said "congratulations, I hear you took yesterday off cos you're pregnant." I went cold and asked where he got that and he laughed and said he made it up. People just don't think do they? Either that or my phone is bugged and he's a sociopath. I have so many people fishing for info on when I'm going to have kids. I will have zero tolerance for the fertility bullies now! I will tell them I discuss my fertility with two people; my partner and my doc. We can do without that crap!