Miscarriage campaign - next steps

[JustineMumsnet]

Hi all

As many of you will know, we launched a miscarriage campaign a while back to try to do something about the awful experiences that some women (and their partners) have when they miscarry. We came up with a ten point plan, and since then we have been lobbying relevant bodies to get these issues looked at.

Now that we've given the new government a few months to bed in, we reckon it's time we started making a bigger noise about this in government and Department of Health circles. Before we do so, we wanted to run the Code past you one more time. Do these ten points still represent the most important issues, in terms of where healthcare professionals could do better in miscarriage care?

Do let us know your thoughts.

[Voddy]

i'll read your recommendations in a sec, but really want to echo wha leningrad says about the agony of a medically managed early miscarriage, ie tablet. I was told, like many others to go home and wait for period type pains. Instead i went home and ended up crawling across the bedroom floor at midnight with full on agonising contractions. Horrific. I've heard many women say the same. This offer to be addressed.

[Voddy]

i'll read your recommendations in a sec, but really want to echo wha leningrad says about the agony of a medically managed early miscarriage, ie tablet. I was told, like many others to go home and wait for period type pains. Instead i went home and ended up crawling across the bedroom floor at midnight with full on agonising contractions. Horrific. I've heard many women say the same. This offer to be addressed.

[bosch]

Not sure that I can add anything to your recommendations, they look pretty impressive to me.

Sometimes, you just want people to be brave and honest in their approach to you. When I had my second mm/c, (v early, died a day or two after early scan had confirmed that all was going well) the foetus came out when I was on the toilet and I picked it out and took it to hospital the next day, as I had appt for a scan to check if m/c was progressing. Nurse gave me to believe there would be some examination of the foetus, which gave me false hope that I might get an explanation of what went wrong. When I returned to hospital a few days later for follow up scan, a different nurse told me that any examination of what I brought in would be limited to determining if it was the foetus or not. I felt enormously disappointed that all they'd done was cut it up and throw it away. I wish the first nurse had been a bit more direct, and not got my hopes up.

[SGertie]

I agree with the need separate waiting areas and more understanding staff. On my follow up scan to check if my natural mc had progressed ok, the sonographer didn't look at my notes and asked me how many week pg I was. I'm not sure it's a mistake she'll make again after my reaction

[SGertie]

I should have said, I think MN have hit the nail on the head with the 10 points.
You have reminded me my (locum) GP told me to call the maternity hospital to cancel my appointments

[MmeLindt]

Very good recommendations.

I am interested in the fact that women in UK are advised to wait for a natural miscarriage. Where I was (Germany then Switzerland) this is not done, an ERPC is done as a matter of course. Presumably this is a cost issue though.

It has always seemed exceedingly cruel to send the woman home and tell her to wait until it happens naturally, without making it clear how long this could take, and how bad the pain can be.

[TheSleepFairy]

The 10 point plan is so upsetting to read as I recognise every point made. I've had 6 mc's & I have never been offered anything other than an erpc.

I have never been pffered an option other than "the hospital dealing with remains" I didn't even know I had a say - that hurts me now even after all those years.

I remember camping outside EPU with a bottle of water & refussing to leave until some one scanned me & put me out of my misery.

I wish I had known about MN back then.

I felt like the staff had seen it all before & couldn't give two hoots that it was me again

I just wanted to add that any appointments that had been made for following weeks & months were left in place & I received countless reminders for scans & consultant appointments even though I rang the departments & told them we were no longer with child - would it take a member of staff that much longer to ensure through patient care that records are updated when the patient is discharged and appointments cancelled within the hospital?

[FunnysInTheGarden]

women should be encouraged to opt for ERPC (for want of a better term). It is no good to say to an inexperienced woman, 'do you want to wait for it to happen naturally?' You have no idea with your first what it entails. I was very lucky and with both mine, had an ERPC without any discussion, because it was the right thing for the hospital to do. It is bad enough as it is, without having to wait for the baby to miscarry.

[mnistooaddictive]

The worst thing for me in my 4 mc was due to a foreign doctor with poor English, her description of erpc was we will take a spoon and scrape out the bits from your womb. That one sentence still has me on years 7 years and 2 children later. I am not racist or against immigrants, quite the reverse but her poor choice of language caused me emotional harm. Also the other doctor who was do busy telling me about returning from India for her fathers funeral she didn't have time to answer my questions about m/c. Ininderstand it was traumatic for her but I was also suffering. These these can't be legislated for.

[mnistooaddictive]

Funnys. With my first m/c I was told to have an erpc and being new to this whole thing I did it as I didn't know better. It was unnecessary, I had already told them I gad passed everything already.

[FunnysInTheGarden]

Havingkittens I can't believe that you had ERPC with a local, that is horrific. I had a general with both of mine, and no discussion about any other option for which I was eternally grateful.

[kat2504]

Very good work on this - well done. There are so many issues that need to be looked at.

The most important is realistic expectations. A few hours after ERPC I was discharged, expecting a period-like experience of bleeding and cramps. like a heavy period is what I was told. 48 hours later I was re-admitted to hospital overnight with agonising pain requiring tramadol, and much heavier blood loss than I have ever had in a whole period, let alone in a few hours.
I didn't need to be in the hospital. I could have been prescribed decent painkillers and told what to expect. The reason I ended upin A and E is because I was scared as it was not what I expected. I was also never warned about passing clots.

When I went in for the ERPC I was treated very sympathetically by the staff and we were given a private room where my partner could wait with me. However, before this point we had to spend about an hour sitting in a big waiting room outside day surgery area. I was petrified at this point and it was hard to keep it together in such a public place.

I found the EPU to be very sympathetic and they took a long time to talk to me. The people who dealt with me were very kind. I wish I hadn't had to wait so many days before the ERPC, I know it isn't technically urgent surgery but it was so horrible to know you are carrying a dead baby inside.

I also think women need more realistic expectations about their emotional recovery and to be provided with sources of help with this, such as counselling or support groups. I was given a leaflet along with the standard We are sorry you had an mc leaflet about a support group but when i saw a doctor 6 weeks later for a check up I was never asked about how I was doing emotionally. Obviously I could have brought this up myself I know, but it would have been nice to have been asked.

not having separate waiting areas is clearly unacceptable. If the EPU is not open for a scan there must be somewhere else apart from the maternity ward. surely emergency gynae ward have a scanner?

[ClaireDeLoon]

Kat the problem is that there may be scanning equipment but nobody competent to use it. That's certainly the way it is at my local hospital, it's a complete waste of resources.

[Rainbowpenguin]

I totally support mumsnet in this campaign. My 1st mc at 13 weeks was the easiest one as the hospital were a lot better. I went into A and E on a Sunday, was scanned within a couple o hours. Then I was told I would have surgery the next day. They also gave me a private room on a gynae ward and let my friends and family visit whenvever they wanted.
My 2nd miscarriage was handled appaulingly. I started to bleed and went to A and E, and they made an appointment for me at EPU for 5 days later. Tehy told me to come back if the bleeding returned. It did so I went back on a bank holiday and they were horrible to me, they treated an abusive drunk with more compassion than me. I never even saw a senior nurse, they left me with a student. The senior nurse popped her head round the door as I was being told I was going home.
I went back the next day as I was developing pain and they were a lot better they actually kept me in hospital. It was a good job really as I ended up miscarrying naturally and I haemorragged. I didnt realise that I would experience contractions and how similar it would be to a birth. In the end the baby got stuck and the Dr had to remove it while I was on the ward. If I had been at home I would have become very poorly and my kids would have seen what was happening.
I had so many inappropriate comments from staff it is unreal.
The most important thing for me is that hcps treat miscarriage very flippantly, it is not acknowledged as the loss of a baby and they all completely ignore the fact that it is such a horrendous experience. A little compassion would have made all the difference to me.
In hospitals now, they are veering away from the surgical option and promoting medical management for miscarriage. They are doing this WITHOUT explaining fully what the process of medical management involves and what will happen. I have met so many mums who have had this option but have been so traumatised by the experience and the thing they comment on the most is that they didn't realise how traumatic it would be. They are not prepared and when they are left traumatised there is no follow up or opportunity for counselling leaving many women to try and come to terms with it on their own in an environment that doesn't accept how traumatic miscarriage is.
If I can help in anyway with the mn campaign I will!!

[InMyPrime]

Glad (in an odd way) to hear that I'm not the only one who experienced extreme pain and had to go to A&E. It seems to be something that very few people are honest about. Just to clarify as well, part of my problem was the waiting time for ERPC. I had my scan on a Thursday and took a while to make a decision to go for ERPC as I was scared of the risks of surgery. When I did decide on the Saturday, they couldn't get me an ERPC appointment until the following Friday so I ended up going the natural route, not out of choice, but just because it happened anyway. ERPC is the way most countries handle MMC, as MmeLindt says above, so I am pretty appalled to hear that some hospitals are going the route of encouraging natural or pill-induced MC to save costs.

I think one of the biggest issues is that hardly anyone who hasn't had an MC, particularly an MMC, has any concept of how traumatising it is. I didn't either, to be fair, until it happened to me. It's hard enough to deal with people's ignorance in the general world e.g. at work but really the medical profession should be more informed.

[florizella]

Hi.. I've just joined mumsnet for this particular campaign.

I got pregnant after 3 years TTC and miscarried after 9 weeks (empty sac). The nurse commented that the sac was very small and was I sure I was 9 weeks? To which of course I said I was definitely sure, but they said no more.

I miscarried again after 6 weeks, I was told then not to try for a baby for another 3 months, I was 34 at the time, and not willing to wait for so long, when I said this to the doctor, she commented that if I miscarried again then perhaps I would know why.
When scanned, again the comment was that nothing was visible, and was I sure that I had been pregnant at all? Again I said I was sure, again nothing came from this. After these, I demanded some further testing for why I was not conceiving or keeping babies, and the doctor gave in and gave me a referral. Blood testing showed I was pregnant, but I had a 'period' at 4.5 weeks as usual. Further testing showed I had Factor V leiden (symptomised by small sac growth and slower develpopment), and suspected protein S deficiency. It seems likely I am miscarrying multiple times at 4.5 - 5 weeks. However, the NHS will offer no treatment for this, despite some evidence from the US that anticoagulants can help if given before conception.

I too had to deal with incredible pain during miscarriage, being blamed by medical staff, and sharing wards and waiting rooms with healthy pregnant women holding scan pictures of babies.

Please please please can MumsNet help improve care for women like me!

[CuppaTeaJanice]

Grrr....wrote a long post then the internet connection crashed.

I think the booklet that they give you when they confirm a MMC needs to be significantly improved, with specific detail about the physical processes of a miscarriage. Just vaguely saying 'it's like a heavy period' isn't particularly helpful to someone who (without going into detail) has used up five toilet rolls in twenty minutes and passed out on the toilet. It's not nice stuff to read about but people need to know things like the range of normal blood loss, the possibility that 'product' can get stuck, cervical shock, the pain issues described by posters above that thankfully I avoided.

And yes, a link to Mumsnet would be great. I don't want to join an association where I'm going to be sent a magazine about miscarriage every 3 months, just to remind me of the horrors that have happened, yet this was the only 'support' system suggested.

[CuppaTeaJanice]

I should probably add that I was very lucky with my EPU. They only had scanning available mon-fri 9-5, but that is my only criticism. The staff were great and very compassionate, and there were no obviously pregnant people there. In fact I was surprised at the high numbers of geriatric women for an early pregnancy unit - I can only assume they did general gynae stuff too.

Shame other hospitals can't be so good.

[swedie]

Have got a campaign suggestion, apologies if I'm over stepping the boundaries of the feedback you're looking for.
In the research I've done into this topic following complaints I've made locally I've discovered that my pct doesn't give out funding for epu specifically but it's part of the wider gynae funding. Nor does the pct specify what epu services the hospital must provide. I think it's a combination of this non existent commissioning and the lack of Nice guidelines that have led to such poor services.
Can I suggest that a way to really demonstrate the poor services miscarrying women receive and the inconsistencies in provision nationally would be to put a freedom of information request to each pct asking what level of activity the commission for epu services and what funding they make available.
I think we'd see real evidence then that this is an under funded, under resourced service and that's why mumsnet is having to tell clinicians what women should get.
Another one who'd be happy to help with the campaign here.
And my thoughts are with all of you who've had such appalling care.

[MummyAbroad]

I think it would be helpful if this part read

"What each option involves and the likely timescales, and risks for each should be explained clearly, sympathetically and honestly either by trained medical professionals or in a leaflet."

I had an ERPC on the NHS and later discovered that I had Ashermans Syndrome (scar tissue on the uterus caused by surgery) which caused a miscarriage, then complete infertility (no periods) and I then needed very expensive private surgery to correct it.

I also think that whether women have a natural, medically managed miscarriage or an ERPC there should be a mandatory check up a few weeks afterwards with your GP/EPU/hospital where the woman gets to discuss any issues resulting from the mc, and has a chance to ask for a scan if necessary to check the uterus is now clear. At the moment there is no follow up of mc Why not? There are a huge amount of women who suffer from complications after mc (retained tissues, infections, molar pregnancy, ashermans) that are simply being ignored. There should be a formal appointment where women are assessed to see if they have any of these complications, and are given a chance to have their questions answered.

Thank you MN for running this campaign, its a fantastic idea.

[ttalloo]

I think this is a brilliant campaign. The code is great, although I support an earlier suggestion that women over 35 should be checked out after two, rather than three MC because of the drop in fertility after that age, and that three MC should be investigated even if there have been successful pgs in between.

I also support the need for follow-up scans after an MC. I had an ERPC after my second MC, and when my first period after that lasted for three weeks and produced heavy blood clots that flooded my clothing, my GP wanted to give me antibiotics for an infection, and the hospital didn't want to know. It was only when I gave it up in despair and had a private scan that I learnt that the ERPC hadn't been done properly.

Part of the problem is having to cope with:
general stupidity in medical staff (like the midwife who rang me at work after my first MC to ask whether I still wanted my 12-week scan because she saw from their records that I had had an MC four weeks earlier);
insensitivity (a gynaecologist who told me when I was bleeding heavily and experiencing what I now know to have been labour-like cramps that he had seen women in worse condition than me go on to have a healthy pregnancy - I went home and passed the foetus in the loo an hour later);

Probably the code can't do much about that, but at least if it empowers vulnerable women to stand up for themselves because they know that they have rights, it might go some way to making people think twice before they do or say something that makes a terrible situation worse.

[harassedinherpants]

This is a brilliant campaign!

I'm currently experiencing my 3rd mc (2nd this year), 2 natural and one mmc & erpc. No one explained to me that there was any option with the remains of my baby after the erpc. This was only in January too. I was devastated to subsequently find out that we could have had some options, and feel that I let my baby down.

I'm also sick to death of the whole "it's one of those things" mentality. Even yesterday when I was talking to the doctor after receiving my blood test results to confirm my mc. She said they won't do any tests until I've had 3 mc's with my dh (1st was with ex), but I've now had two in a row, there's obviously something not right.

I think miscarriage, and the effects on women and our families, really needs to be brought out into the open more. I've seen people of knew I was prg and mc'd totally ignore the fact, and in some cases ignore me! I put it down to ignorance of the facts and a kind of embarassment similar to that surrounding mental health issues.

[ChessPiece]

When in for a scan for a successful pregnancy, I had a sonographer casually remark while reading my notes, "One miscarriage, that's right is it?", without even looking up at me.

As it happens, dh hadn't known about it and was devastated. I also felt the way she spoke was disrespectful and insensitive. My child died!!!! In any other context a professional would hopefully handle that sort of conversation with great delicacy and not just blurt out the bald fact with no conversational context or kindness. A mc is a bereavement not a bundle of cellular matter.

I must admit I was utterly ignorant that women are sent home to manage a miscarriage on their own. Are there perhaps some women who feel comfortable about this? Sorry, I can only imagine myself doing this and am freaking. Objectively speaking, it seems bizarrely callous.

Fantastic campaign MN. Will hopefully do so much to stop adding to the pain of women suffering miscarriage.

[JustineMumsnet]

Thanks for all the input/comments. We're going to keep this thread stickied for a couple more days to allow everyone a chance to input. So do keep the thoughts coming.

[ChristinedePizan]

Hospitals really need to have a better policy to deal with women who come in at the weekend too. I was taken to A&E at 15 weeks on a Saturday with heavy bleeding and the registrar who used a doppler on me couldn't find a heartbeat and told me my baby had died (he was very sympathetic though). BUT he hadn't died (he's now 4!) but I spent an agonising weekend until I could go to the ERPC and have a scan. If people don't really know what they're doing (and I know it's hard to find a heartbeat sometime with a doppler) then really they would be better off telling women they just don't know and to wait.