Step this way to help shape the future of maternity services in England

[RowanMumsnet]

Hello

As some of you will know, Mumsnet is on the panel of the National Maternity Review, which is an NHS England initiative set up in the wake of the report into the deaths of mothers and babies at the Morecambe Bay hospitals trust.

The remit of the review is to 'assess current maternity care provision and consider how services should be developed to meet the changing needs of women and babies'.

So we'd be really grateful if you could give us your feedback on the following two very broad themes:

Which choices do you wish to be able to make about the maternity care you receive?

What are the key barriers preventing women from making the choices that they wish to?

Thanks - any and all thoughts welcome. (And just FYI, this won't be your only opportunity to feed in, and more detailed feedback systems are going to be launched soon - we'll flag these up as they happen.)

Which choices do you wish to be able to make about the maternity care you receive?

I wish there were more choices of stand alone birth centres, run by midwives. There are none which are close enough to me to attend.

Why can't services like one to one (which are paid for by the NHS but run separately) be more widespread?
I wish trusts would look at each others guidelines and have similar ideas (ie, in one hospital a vbac could go to a birth centre, in another they couldn't). There's no consistency and it feels unfair.

What are the key barriers preventing women from making the choices that they wish to?

Lack of resources within the NHS. Not enough funding for birth centres or other services. Being stuck in the dark ages "it's how we've always done it"

I basically want more options than standard nhs midwife care at my gp, and birth in a hospital. Both these things are fine but I know there is more choice in other areas of the UK.

I second the request for more birth centres / mlus - there isn't one in my area. If there was I would probably use it but instead I am hoping for a homebirth.

I would like the option to see the same midwife throughout pregnancy.

I would like my own midwife who stays with me throughout labour - this is offered at home births here but not in hospital, and is a key reason why I'd like a homebirth.

I would like to see more information about breastfeeding (and getting in touch with breastfeeding groups) in the antenatal classes. Women who wish to breast feed need to know ahead of time who and where to go for support and questions. Trying to find out after the fact when they are sleep deprived and struggling is setting them up to fail. Ditto the induction process - I believe it's a large contributory factor to the UKs high cesarean rate.

Another one in support of birth centres.

Ditto antenatal breastfeeding support, thats a teally good point.
I would add: consistency in allowing choice of birth method. I requested a c section with dc2 due to previous 3rd degree tear but elcs are refused at my healthcare trust. If i lived somewhere else i could have made that choice.

Its I interesting that people are asking for midwife lead units because I have had 5 children, with 13 years between the first and the last, all born at my local midwife lead unit. The experience was fabulous, caring but honest and professional every time. Personally, I felt very vulnerable and inhibited about childbirth, I hate the idea of losing, what I saw as my dignity, but they reassured me by being real people, real women were whatever position I chose, or funny ideas I had about birth, where ok. For example, I didn't want them to announce the gender of my babies, I wanted to find out myself straight after delivery, it was so very special to me. I liked that they chatted away with my dh and I, it seemed to normalise things, putting an ease around the room. I guess what suited me having real, but professional people that don't behave with superiority.

Hi, another one in favour of a birth centre in my area! When my mum had me these were a lot more common and I remember visiting my little brother when she was there! It seemed quite friendly compared to going into hospital, which quite frankly I find quite intimidating! I love the idea of a birth centre but fear my nearest one is still too far away! We shall see.

I would like more family centred postnatal care for high risk women. It seems unfair that women in the MLU who are only in for 6 hours post birth get the nice homely room with the double bed and the high risk women have to stay in the shared ward from hell for days.

Which choices do you wish to be able to make about the maternity care you receive?

I'm a healthy, fit, and had a no issue low risk pregnancy.
I intended to have a midwife led water birth. At 20 weeks and 28 weeks I stated that if i reached 42 weeks without going into labour naturally then I wanted a c section. That I would refuse induction.
This information was disregarded. And at 38, 39, 40 and 41 weeks I was told I had to come in for induction.
After spending a whole day in the assessment unit, being told that 'my baby will die' 'that I must have an induction' 'that c section is dangerous and I could die, and that my future reproductive potential would be damaged' although monitoring didn't show any concerns. I eventually relented when the Dr said 'I'll book you in for a c section only if you have a sweep today' even tho I expressed concern that it would break my waters but not start labour.

Waters broke, I had contractions. I came in when they said I had to. They said I wasn't progressing enough? And that was the end of my water birth.
The next 18 hours consisted of me refusing an induction. Every 15-30 minutes they asked me if they could start the induction. I felt like I was loosing my mind. My husband felt like he was loosing his mind.
Eventually there was a shift change, and a c section was agreed.

From that moment the care I recieved was care full. It went brilliantly. I was up and about the next day, my scar healed well, the breast feeding started straight away, and I felt on top of the world.

My birth plan was shown to midwives in my appointments, but never discussed. It wasn't read at all by the midwives and Drs who treated mean the first day I was in labour.
The only person who read and acknowledged it was the Anethetist and Dr who did the c section,
I don't understand why we are asked to write a birth plan if the nhs refuses to consider them.

What are the key barriers preventing women from making the choices that they wish to?
The system. The fact that you see lots of different of staff. There's no continuity of care.
I would have been happier to follow the line had I not been encourgaed during the nhs ante natal classes, to think about, read about and prepare for birth.
But the information I read about natural birth, about natural oxytocin, and our body being ready to do its job, was pretty compelling, and I couldn't see how an induction would give a positive outcome.
Everyone talks about choice, and how we can't be told what to do, but in the end they won't listen to choice unless you stand absolutely solidly.

Oh i agree about postnatal care. It's terrible in the UK unless you have some kind of caseload system (like one to one). If you're struggling with feeding, or mental health, or anything really, you might need visits daily which last an hour or more. Not just a quick "everything ok? Good! Bye!"

I wish to be able to choose to have access to adequate pain relief, which includes an epidural, without anyone trying to talk me out of it because I'm 'low risk', or 'won't need it for your second one'. Anaesthesia in childbirth is a basic human right, and I'll be the judge of whether I need it or not. This is particularly important because while a woman can theoretically choose to do without pain relief and there's nothing medical staff can do, choosing anaesthesia requires medical staff to be on board with this. So the ability to access anaethesia is the most important issue regarding women's choices in birth.

Key barriers from preventing women from making the choices they wish to- paternalism. Medical staff being unwilling to honour a woman's request for pain relief, or indeed to do without it. In my case, a midwife simply deciding she didn't want me to have an epidural.

I would also like to see more information provided regarding formula feeding. I was sent home from hospital with a leaflet about care of a newborn that included a great deal of information about how to tell a breastfed baby was having enough or not, but nothing about formula fed babies at all. Outrageous, when over a quarter of mothers leaving hospital are not breastfeeding.

Which choices do you wish to be able to make about the maternity care you receive?

I wish they had given me the knowledge to make an informed choice about childbirth. No one mentioned forceps and ventuouse other than that they happen in an emergency. Certainly there was no discussion about associated long term health risks. C sections were only mentioned as something to avoid.

DS was back to back. They didn't spot it despite having all the classic signs of a back to back labour. I ended up with an episiotomy, forceps, 4th degree tear (3.5 yrs later, I'm still having physio for this), and our baby rushed to NICU as he struggled to breathe.

I wish I had been able to make the choice between forceps and EMCS at the time his heart beat dropped. Maybe the outcome would still have been poor but at least I would have made the choice. In fact (particularly as I am gene positive for Huntingtons Disease and therefore highly likely to have continence problems in the future), I wish someone had properly explained the risks of vaginal delivery, instrumental births and c sections from the start rather than constantly focusing so much on pushing me towards a not always achievable 'ideal' of waterbirth, gas and air, skin to skin, home that day which was so far removed from actually did happen for me. I am not convinced I would have chosen a vaginal delivery had I properly realised the real risks.

What are the key barriers preventing women from making the choices that they wish to?

Lack of appropriate information being given to women about childbirth and the real risks still happening stops them from making an informed choice.

Lack of evidence-based knowledge around the risks of childbirth stops this information being given in the first place.

There's so much pressure to achieve this ideal birth, that no one wants to discuss the very real risks of childbirth (neither practitioners nor pregnant women). An acknowledgment that you can do all the yoga, breathing techniques, hypnotherapy you like and it still might not be enough. Things go wrong, and birth plans should focus more on what the woman wants if things go wrong (with a discussion of the risks at that time) than what they want if things go right.

So many times I have heard people say that when the delivery goes wrong, the birth plan goes out of the window. If the birth plan was properly thought through (including what happens when things go wrong - e.g. would the woman prefer instrumental or c section?), then the birth plan could actually be really useful. What is the point of a birth plan if it is not to cover the unexpected?

I had to really fight for diamorphine when I was in absolute agony and completely exhausted because I stupidly wrote down "water birth" and "gas and air" in the pain management sections of my birth plan. The midwife kept asking if I was sure, kept asking me to wait a bit longer... I so wanted that waterbirth with gas and air, I would never even have thought to ask for the diamorphine if I actually thought I could manage without. It took a lot for me to admit things were not going according to "my plan", they should have sat up and listened to what I was saying a lot earlier than they did.

Proper aftercare for all women. Not just focused on the baby and not just the 6 week check. Proper referrals for all those who want it to physios and whoever else is needed to help guide us with pelvic floor exercises to prevent issues in older age. The barrier here is obviously money but it would save money in the long term to deal with these things now rather than wait for it all just to get worse. Without this aftercare, women can't make the right choices about future pregnancies.

Some practitioners' attitudes. My original colorectal surgeon said to "blame my son for my injuries". Honestly, the fact that he said this (whether it was half a joke or not) really offended me, and I never truly engaged with his team at all after that. Also, they didn't listen to me when I said I didn't want my incontinence "solution" to be using pessaries for the rest of my life. I have moved house since then and luckily for me, my new practitioners are brilliant. Proper physio has really helped, I see an understanding colorectal surgeon for a check up every six months, and I'm actually on top of it all at the moment without a pessary in sight.

Also no information was ever provided on mixed feeding. Plenty of people do it but it is presented as such a dichotomy between breast and bottle.

Maybe there needs to be a proper acknowledgement that you just have to do the best you can with breast feeding whether that's none at all, breast now then bottle later, a mix of the two, or exclusive.

Maybe if mixed feeding were discussed, more people might stick at breast feeding for longer.

That everyone involved does, or feels that they can, pay attention to what the mother wants - not that they are more focused on statistics, guidelines and targets to meet.

So if a very low risk woman wants to be in the CLU and have an epidural, they should be able to (if there is room), not encouraged to do without as they are low risk

So if a first time mother is adamant that she wants an elective, she should be able to

Birth will be one of the most painful, intrusive, emotional and rewarding experiences of any woman's life. To me it shouldn't sit as neatly within guidelines as some other medical experiences do - none of this "we aim for X% of women to have a VBAC". I believe the woman giving birth is the one who should be allowed to make any safe medical decision, whether it is to have pain relief or not, whether it is to labour on an MLU or a CLU.

Basically, stop making women fight for an epidural or an elcs. I don't think maternity care services probably understand how many women are out there scared of getting pregnant again because they had such a hideous first birth but know they can't just ask for, and easily get, an ELCS.

I also agree with previous comments about the post-labour ward. Some are utterly shocking and yes, as PP says, it seems that if you have a nice labour you get to enjoy your home-from-home private room for some peace and quiet alone, but if you've had a crap labour you get stuck on a public ward. It's lose-lose.

Oh yes I agree that postnatal care was appalling and without doubt the worst part of maternity care. However I don't think more choice is what is needed there, just a decent, respectful level of care wherever you are.

I got stuck on a ward, everyone else had their babies and mine was in NICU. It was horrible. DS was a 5 minute walk away for a fully able person. It would probably have taken me 20-30 minutes of a lot of pain to shuffle there by myself.

I used to get my husband to take me down in a wheelchair. I did then get shouted at by one of the nurses in the NICU that I should be walking, and the doctor would get really cross with me if they saw me walking. I explained about my 4th degree tear but to no avail. So my husband used to wheel me down to the door, and I would shuffle inside pretending I had shuffled the whole way.

She was so pleased I had "listened" to her, she then was really nice to me and helped me to get breast feeding started.

There were some lovely nurses/midwives that we met but there were some real shockers as well. A little bit of sympathy would have gone a long way!

Snap taleggio. I also missed most of my meals, pain relief and postnatal checks because I was always in the scbu attempting to breastfeed dd. I think a special room for mums whose babies were in scbu / nicu would have helped a lot.

That would have perfect!

Ditto - it was always such an issue if you missed your pain relief or your meals. Even though my room was specifically a side room for women with babies in NICU. I wouldn't have thought it was rocket science that the women with babies in NICU/SCBU might not be at their bed all the time. I'm not saying they should chase around the hospital to find you, but it would have been more reassuring if you weren't treated as if you missed the drugs run deliberately just to annoy the nursing staff...

MN - this is a subject I'm passionate about, because due to poor care my dd1 was left with something called hypoxic ischemic encephalopathy. Her brain was irrevocably damaged during labour because of proven negligence and she is disabled with epilepsy.

and it was avoidable

Yup.

But I'm over the anger and rage and now just want to petition for better care. But the EoE NHS team have fobbed me off for over a year as patient liaison despite me travelling hundreds of miles to attend meetings.

Can I help?

P.s. I've some.stories t make your hair stand on end ^ but my primary aim is to both help.reduce the stillbirth and neonatal death rate but to focus also on those who survive but are left with lifelong disabilities who are often forgotten.

Allowing partners to stay overnight needs to be scrapped. No other wards are mixed, let alone when the patient is at her most vulnerable. The strange partner of the woman opposite stayed 24/7 and outrightedly stared at me as I tried to establish breastfeeding, thanks to the ward's delightful open curtain policy. After a traumatic birth, I was too exhausted and upset to complain. The partners also used to eat the food at the communal kitchen bit, often leaving the latecomers with no dinner. Partners weren't meant to be fed, but it was all nudge nudge wink wink with the people serving.

Maternity wards need to feel like they belong to the new mothers.

Also better breastfeeding support. Not one person checked my latch. Luckily DD fed with no issues (except the usual cracked nipples, agony when she fed etc) but I should still have been asked how it was going, and checked. The furthest I ever came to discussing it was when the midwife ticked the breastfeeding box on her first home visit.

Oh yes and while I am on the subject, meals which are an appropriate size and type for women whose bodies are recovering from a marathon effort and/or major surgery, while probably trying to ebf another hungry little person. This does NOT mean a single cardboard sandwich. Some fresh fruit would be great, too.

Oh hell yes, food. Even though my DD and I were healthy, she screamed if I put her down and I couldn't get up (never mind walk) due to EMCS and being catheterised. It would have been nice if someone had brought me some food instead of simply calling into the 6-bed bay "lunch is in the kitchen".

I also wish I'd known more about the realities of lochia. I thought it was just like a heavy period for a long time. It WAS like a period for about a week and a half, then stopped. Then came back when DD was 16 days old - it was like pouring rain. Went to A&E, they were a bit at me, but checked me out and sent me home, whereupon I passed a clot the size of my fist. All this is apparently normal and nothing to make a fuss about, but it was the single most terrifying thing in my entire pregnancy/birth.

Which choices do I wish women to be able to make?

Fully informed choices.

Choices about place of birth - home, MLU or CLU and the right to choose for themselves regardless of their risk category provided they have all the info (I was high risk but chose a home birth, not all women know they can do that).

Choices about tests - the right to decline tests (eg blood tests, urine tests, scans, being weighed) - and being fully informed of the risks/benefits/necessity of any tests (I declined blood tests in my 2nd pregnancy)

Choices about induction and not being presented with a date for induction as an automatic step at 40+10.

Choices about physiological third stages vs managed 3rd stages.

the key barriers to those choices

Lack of info from midwives - women aren't told they have choices. Just because a particular choice is the best choice in the eyes of a MW, it is still the choice of the woman. You cannot make an informed choice without information.

You cannot give informed consent without information.

Information is not given to women routinely - induction, sweeps, blood tests, managed 3rd stages - so many women are not told they have a choice.

Things are often done TO them and not WITH them.

I strongly suspect this is because of an underfunded, understaffed, overstretched maternity service overall, not a lack of care or desire by MWs to provide a really good, individual service.