Fertility Network UK
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Raising awareness of the psychological impact of miscarriage and infertility

Hello again - my other project this year is to create a shift in the way couples who experience miscarriage and infertility are treated by clinicians and care-givers.

I've written to my local hospital (where I suffered my first miscarriage and was turned away from A&E in agony and bleeding heavily. I was carried back in about twenty minutes later, unable to stand, delirious with pain and severely low blood pressure from the blood loss). I've also written to my GP surgery to complain about the fact that despite telling a doctor and the midwife of ongoing, light, brown bleeding during my second pregnancy, plus the added complication of severe anxiety following the first m/c, that no early pregnancy care was offered. I ended up having to pay for a scan to confirm my worst fears.

The idea is that I want as many people as possible to be aware of how their actions can impact the psychological well-being of someone suffering a trauma such as miscarriage. I'm certain I'm not alone in feeling dismissed and let down by my local care providers. I believe it's a nationwide problem, and comes down to attitudes which need to be changed.

I found this article very helpful and am going to send it to my GP - perhaps others on here might find it useful (and cathartic) to do the same.

figo.org/news/what-psycholo...

Lots of love to everyone for the coming year. Let's hope it's a good one xxx

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Good for you! I contacted PALS and made an official complaint for the way I was treated at my “miscarriage clinic” (yes I do use the term lightly) appointment at my local hospital. No empathy, everything very matter of fact, conflicting advice, no help whatsoever. The lady dealing with my complaint is lovely. I’m glad I lodged one now. If our actions save one woman/couple’s pain from being added to then it’s worth it xx

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Exactly right - if we can make a difference to just a few people then it has to be worth it. I'm glad to hear your complaint has been treated with the decency and compassion that you should have got from the people working in the clinic.

I've had an acknowledgement of my complaint to the hospital but no response yet. Fingers crossed someone sits up and listens.

Loads of love to you for 2018! xxx

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Well done you! They are supposed to be there to support you, not let you down when you need them most.

We lodged a complaint with our old clinic because they just ignored us for 4 weeks after my OH’s SSR, no promised follow up from an embryologist and then finally a five line letter saying that there was nothing more we could do.

Their first response was a complete fob off blaming the nurses who were brilliant and in no way responsible. So I told them I wasn’t willing to accept this and they did a complete 180.

They now have a new process to offer every man counselling and to ensure that everyone has a follow up appointment to explain the results. Plus a 50% refund of what we paid them.

We had to fight for it though x

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Good on you for pursuing it. It must have been so hard to find the energy when there are so many complex emotions flying around, but i think it's amazing you managed to get them to change their processes. It really shouldn't be this hard when we've already been dealt a rough hand.

Very good luck to you for the next steps of your journey. I hope you and your partner are coping as well as you can.

Xxx

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Thank you. It was actually really positive to put our energy into something other than my OH’s lack of sperm. And he is so pleased that no other man will have to be treated this way.

We are well and truly put off private hospitals though and will now self fund at an NHS hospital (first appointment on Wednesday 🤞) x

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Wishing the very best of luck to you both for Wednesday. And hats off to you both for making a difference - such a positive change to come out of something so horribe Xxx

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Good for you. I knew my baby had died during my last miscarriage as we had early scan at clinic. It had to be confirmed by the hospital though. They knew all this and still put me in a waiting room with young pregnant mothers there for abortions (heard them discussing). I just felt this was so wrong. More care is needed. All the best xx

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Unbelievable. How can they be so thoughtless? It's just about common decency at the end of the day. I'm so sorry you experienced that on top of the trauma of losing your baby. Wishing you all the very best for the future xxx

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I didn’t think they did this any more, although it was very commonplace just a decade ago. Please make a complaint through PALS if you are in the UK.

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I have to say my hospital where I was seen in A&E, then the EPU, and later the Day unit for a D&C were just amazing. Every person I came into contact with were so kind and empathic. Although there was a wait for the scan, they really fought for me to be seen quickly, and the nurse in recovery after my op even wiped my tears away, I literally couldn’t have asked for more compassion for myself or my husband, but I know we sadly are in the minority. I just feel if one hospital can be so good, then they all should be, and some of the stories I’ve heard on here have been nothing but heartbreaking, and I’m so sorry you had a terrible experience, considering a miscarriage is just terrible. I found my struggles came when I went back to work, with people presuming that we can just crack on with life, for me it really set me back as I didn’t grieve properly for some time x sending love and lets hope 2018 is a better year xxx

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I think it's lovely you were treated with so much kindness. And you're quite right it should be the rule not the exception. That's what I would like to strive for.

Unfortunately I don't think the pain and grief can be avoided, even if you do receive good care. It's just a terrible trauma to experience, and takes time to get over it.

I do hope you and your husband have found a way to cope with the grief and that lots of good things are waiting for you this year xxx

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Yeah a bloody load of therapy has definitely helped! unfortunately we went on to have 2 more failed rounds, which has been hard to say the least xxx

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I think talking therapy is vital. I paid for my own therapy after my first m/c but unfortunately the counsellor wasn't well practiced in infertility and m/c and said all the wrong things. I'm so sorry you've had two failed rounds since. It doesn't get any easier, does it? xx

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No not at all, it takes us up to 4 in all, our last one we didn’t have any to put back, and it nearly killed me! I’ve taken a sabbatical from work (I’m a secondary school teacher) as I just needed a change. On the counselling note I used the one from my clinic, but he has his own private practice so I see him through that. You could see if the clinic could recommend someone? Xx

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I had to complain about my midwife during my second pregnancy about her lack of regard for me when I knew I was going to miscarry and afterwards when I had already miscarried. I complained to the senior midwife in the team and the way she handled my complaint was great. She has spoken to my midwife about her conduct but has also ensured that I will be under her (the senior lady) rather than my area midwife if I get pregnant again. The thing that got my goat was that the guidelines are there, my GP and the EPAU worked within the guidelines and took good care of me. The local midwife was not following the guidelines (or basic common sense eg booking me in for an appointment after I had miscarried and also not telling me about it so I found out about it from an automated text). If she had followed the guidelines from the royal college of midwives then my care would have been fine. Like another poster said, if one hospital can be great then they all should be. We have to complain if things are done badly, or they will never change.

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It's actually really reassuring to hear about the people who are doing it right. I might look into the RCM guidelines myself. I just assumed that once you miscarry you're off the midwife's books and on your own. I've not been offered any follow up appointments or support following either of my m/cs. It's like you miscarry then your notes are thrown in the bin without a second thought. It's just cruel.

I'm really pleased to hear your complaint was listened to and acted upon. Good on you for standing up for yourself and making a change - I totally agree that we need to complain in the hospitals and surgeries where things aren't done right. I have so much respect for the clinicians working in the NHS and all the strain they find themselves under, but they have to respect me as an individual too.

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Once you miscarry you should be off the midwife’s books, one of my problems was that I wasn’t! She should have been automatically informed by the epau that my pregnancy had finished, but she hadn’t bothered to keep herself up to date, hence still making me appointments. That caused me distress and the rcog guidelines specifically state that the onus should not be on the woman to inform services that she has miscarried. It was only part of her poor practice but it gave me something very concrete to complain about, especially since I had looked at the guidelines.

I know lots of people get support from the miscarriage association or from Tommy’s, who are a great organisation, post miscarriage. A good GP will also provide you with emotional support.

Unfortunately, early miscarriage is really really common and it is actually true that most women will go on to have a normal pregnancy afterwards. I know lots of women who have had two miscarriages (and most have children now), and feel that when they trot out that line, it is true. In many cases it really is just bad luck. I believe it is really up to your GP to be helping with your mental health after a miscarriage, rather than the midwives. However, there is some evidence (I also found this through the rcog) that early miscarriage rates are slightly lowered when women feel well cared for and, although they have the stats, they don’t know why this is. So it is important that we feel well cared for!

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I totally agree that the GP should be responsible for the mental health issues that miscarriage sufferers face. I do believe that when (or if) a midwife is notified of a miscarriage it should trigger another action, such as sending a letter to the woman. If nothing else there should be an acknowledgement, and confirmation that she won't be contacted further by the midwife. And ideally it should include information about how to care for yourself, and organisations that can help.

You're quire right that midwives aren't the people to be responsible for all the aftercare, but I feel more can be done than just cancelling subsequent appointments (though it sounds like even that isn't being done in many cases).

I read the passage about early pregnancy care lowering the rate of miscarriage - it goes to show how important it is, and just a few changes could make a huge difference.

Thanks for all your input; you are a wealth of knowledge where 'the system' is confirmed which is a great help to people like me who don't know the whats and wheres particularly well!

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Unfortunately the nhs will just say miscarriages are normal and generally not offer extra care. I was having a miscarriage and they just sent me home saying there was nothing they could do. If I’m pregnant again I will be supplementing nhs visits with private care.

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I'm so sorry to hear you had a bad experience too. You're right, the NHS just doesn't see it as worthwhile emergency care. Even so, I think the way people are treated on an emotional level could be so very different. Sending a woman experiencing a m/c away from A&E is one thing, but sending them away with compassion, some advice, signposting to organisations that can help should be standard.

I hope very much you don't have to go through this again. All the best xxx

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I think some of this comes from then not wanting to over-medicalise pregnancy as this in itself can have negative outcomes. I think that PenRight80 is right that more could be done to take care of the mental and emotional health of women experiencing miscarriage, even if there isn’t anything that can be done physically.

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After a fight for gynaecology to scan me as Early pregnancy refused as they were too busy. I was 13 weeks when I miscarried in April and the doctor asked me to sign a form to say what would happen with the remains after it was released from Pathology. We opted for a shared cremation and were told where the remains would be scattered and we would receive a letter confirming once this had been done. I was a bit taken a back by having to complete this at all however, I had never been in that situation before. Though still to date I have heard nothing.

For myself I personally don’t feel I need to go there for closure or anything however I would like to know if they were scattered and I understand others would need that closure.

I just find it awful that they have never contacted me after telling me this and was never sure who to contact to ask.

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This is just dreadful. Why aren't we listened to when we know something is wrong?

It's truly awful that they have never bothered to contact you. As you say, you don't personally need this for closure, but it comes down to respect for you as an individual who has suffered a terrible loss. It's the lack of acknowledgement that I find the worst. And the fact they don't even give you contact details to follow up yourself if necessary. It's just thoughtless.

I do hope you're getting on ok xx

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If you feel able to, you could contact your hospital’s PALS service and they would be able to find out about the ashes for you. Even if you don’t feel you need the closure, making the point that the promised follow up letter never arrived could help other people in a similar position who don’t feel strong enough to pursue the issue.

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Yes you are not alone, my treatment was awful although not as bad as yours. It was the EPU that I found completely lacking any ounce of compassion. I had only just found out via a scan that I was having a miscarriage and sent straight to EPU where they told me matter of fact the options to “get rid of it” .... no offer of any sympathy or advice on what was happening, no offer of any psychological support.... just two options - medical or do it on my own. Then I was given a date to come back for another scan to see if it had all come away. This was my baby they were talking about!! They were so insensitive. Then three weeks later I went back for the scan and they said it was nearly all gone but the nurse also told me that she wouldn’t know what I’ve gone through because she has never had a miscarriage.

Finally this week - 6 weeks after my miscarriage I got a voicemail from my midwife saying I had missed two appointments and she thinks I’ve moved out of the area!! So the hospital who promised me would tell my midwife - didn’t tell her at all!! I now have to ring her back today to tell her.

Shocking!

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I'm so sorry to hear that. I had a terrible time with the EPU at my local hospital too during both my m/cs. Exactly the same as you - no compassion, no concern, no support and no advice where to go to get support. I've complained to my hospital about the whole experience, the EPU included. It's just not acceptable to work in such an environment and claim ignorance to how someone feels; they should be given some sort of bereavement awareness training as a matter of course.

And how awful they didn't contact the midwife for you. I hope the call goes ok today and isn't too painful. I'm here if you need to chat xxx

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You can complain about this- the epau should have updated your medical records to reflect that you are no longer pregnant and your midwife should be able to see this on your medical records. After speaking to your midwife, if it seems it’s the EPAU at fault, you can complain through PALS to your local hospital. And please do, as it’s the only way to make things better for other women experiencing the same. See my posts above about the rcog guidelines x

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Thanks PenRight80... it’s comforting knowing that there are people like you to talk to as it can be quite isolating when no one around you really knows what you are going through. It has been a tough morning and even though I’m at work my mind keeps drifting. The call to the midwife this morning has really set me back :-(

It’s really quite shocking how a service that is supposed to care for people does absolutely the opposite....

thanks because your kind words have cheered me up a bit xx

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I'm pleased the forum has helped ease the pain a little bit. This place has pulled me back from the brink several times. It really is such an isolating experience, and I can totally relate to being at work and having to keep focussed. It's good to have the distraction of work, but it's really hard when you have to act 'normal' when inside you feel anything but. Especially when you've had to make a really upsetting phone call like that today.

Stay strong and get in touch any time you need a lift or the chance to vent xxx

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I know this is an older thread, but I thought I would weigh in a bit. I am totally up for championing this cause - there is truly a mind-blowing lack of care in some places, particularly when you consider how vulnerable patients are. With IVF, no one enters into it lightly!

Here's the low-down from my side (sorry for the essay):

Our fresh transfer last Nov resulted in a chemical pregnancy, and while the clinic staff up until transfer had been great, they really failed me when I needed them most. On the test day (a Friday) it was negative but as I wasn't bleeding I followed protocol and went for a blood test. All day I waited for them to call me with the results but they never did, despite me ringing three times before the lines closed to try to speak to someone. First thing the following morning I went in and demanded to see a nurse. There was no record of the calls I'd made the previous day, and the nurse said she recalled them discussing my case at their lunchtime meeting, and didn't know why no one had called because my blood test was actually positive. Firstly I was absolutely incensed that they hadn't rung me with that news, and then dumbfounded because she was saying I might be pregnant.

She started to book me in for the first scan a week later but then my cynicism kicked in - something didn't feel right, so I insisted on another blood test. At first the nurse refused but I held my ground and told her I knew my hormone levels needed to be multiplying rapidly because I'd previously had an ectopic m/c. Eventually, a doctor signed it off and they booked me for another blood test on the Monday. Went in first thing and was told I would get a call 'in the afternoon'. At 3:30 I started calling.. and at 5:35pm a nurse finally called to very bluntly say my hormone levels were declining so I should stop all meds and wait for a follow up appointment with my consultant. She had zero empathy, and the call lasted all of 35 seconds before she put the phone down. So basically, unless I hadn't pushed for another blood test, I would have blithely gone on taking meds and believing I was pregnant until the scan. Why isn't it a matter of course that they monitor you more carefully in the first few days when your hormone levels are clearly not high enough to give a positive pee-stick test?!

I complained to my consultant and through PALS and was met with apologies and a promise to review practices. My consultant had the good grace to be appalled - as he said, everything had been leading up to that test day, so there's no way that should have happened..

Cut to second round of IVF (the one we just had to abandon) and things didn't get much better sadly.. Consultant prescribed the 21-day long protocol because there's some evidence that Buserelin can shrink fibroids. I had a horrific time on it with side effects but powered on through thinking it was worth it. Then when I was scanned a couple of weeks in by a (very direct) junior doctor she told me there was no way Buserelin would shrink anything because I simply wasn't taking it for long enough. And that the efficacy of the hideously painful progesterone intramuscular injections I'd also been prescribed (rather than pessaries, on the basis that they deliver a stronger dose of progesterone into the blood stream) was again not supported by strong evidence, but that 'doctors just prescribe them to make themselves feel better'. At which point I fell apart, and while I sat there in tears in front of her she said I would do well to remember that IVF is the one form of modern medicine that is more likely to fail than succeed. !!!!!! I mean, I am more of a realist than many I know about the chances of IVF success but she could have picked her audience better!

When I yet again complained to my consultant, he apologised and said if she'd read my notes she would have known why he'd recommended both prescriptions. Which left me thinking.. why on earth am I being treated by someone who ISN'T looking at my notes?! I was outraged but I did manage to use it to my advantage to make him commit to doing my next procedure and all my scans on the next round for consistency. He also twisted some arms to get an early date for the hysteroscopy, so he restored my faith in humanity somewhat :) We have to stay at this clinic to keep our NHS funding for this next and final round but GOOD GOD, my confidence in them has been eroded.

I know others have encountered way worse situations, and I think the NHS is an incredible system but it's constantly let down by funding and training. There really needs to be much more care and attention given to training staff in these clinics to be more empathetic and sensitive to people going for fertility treatment, it's a brutal enough process to go through as it is!

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