Have your say on antenatal care in the NHS: sweeps, diabetes, maternity notes and more

[RowanMumsnet]

Hello,

The National Institute for Clinical Excellence has recently issued draft quality care standards for antenatal care, and they're currently consulting on them. (If you want to see the full draft standard, please see here.)

As a stakeholder in the process, we at MNHQ are going to feed back to NICE based on your responses on this thread (and on other relevant threads) - so do please let us know what you think. (Unfortunately only registered stakeholders can provide feedback, so unless you are one you won't be able to feed back directly.)

I'm afraid it's difficult to summarise the draft standard concisely, but if you look on pages 4 to 5 here you will see some useful summaries and proposed questions for consideration, including such things as membrane sweeps, treatment of overweight mothers and gestational diabetes.

(Please note that, as NICE points out, this standard doesn't include the inpatient care of pregnant women, the care of specific physical conditions, mental health problems or social problems in pregnant women, or antenatal complications. There is a separate NICE consultation on 'Pain and bleeding in early pregnancy', for which we are a registered stakeholder, and we will alert you to the consultation on that one when it's announced.)

We need to feed back by Tuesday (yikes!), so if you could post any views here by close of play on Monday, that would be great.

Best wishes,
MNHQ

Just to echo what blonde minx said....I could not understand why I had to have appointments in the middle of the day at a location near my home and far from my work. It's not like I was seeing the same person every time, so what difference did it make....at least if I could see someone near my work, I wouldn't have had to take so much time off work.

I have huge issues with maternity care within the nhs, I was passed from pillar to post never seeing the same dr as my consultant was too busy they missed key indicators that something was wrong. No room for me in labour ward when I went into labour and had to go to birthing suite so was not monitored correctly. Only found room for me when I was dilated and could not find heart beat. My daughter died at birth. A catalogue of errors due to an understaffed and over worked work force with limited resources and no investment. I'm a Heartbroken mother knowing her death was completely preventable and I know there are hundreds of women out here like me! I wish the people who make all these decisions could hear us, let me sit down with them and express my concerns as I wouldn't wish this loss on anyone

Exactly like Madsometimes, I too had a sweep without consent with DS1.

I was 40 weeks and thought I was having a routine internal. That's what I was told .... "lie down, and we'll have a look at you". NO-ONE suggested otherwise. However, I did think it a bid odd that the nurse chaperone put her arm round my shoulder as I was lying there .... obviously it had been decided by the medical staff, and she was trying to be kind I suppose knowing what was coming.

The sweep was performed by the oh-so-bloody-important consultant. Arrogant fucking bastard - excuse my French. It was the most agonising, sickening sort of pain - no doubt made all the worse by my ignorance of what was about to happen. He simply said "there you go, that should get things moving" and marched off. Even at that stage, no-one said it was a sweep .... I only gathered what "that" was by looking it up when I got home.

It didn't bloody "get things moving" (DS came 2 weeks later) and regardless of any good intent, so far as I'm concerned, it was assault. The shame is that at the time I was so shocked .... I think literally in shock from the pain and the mindblowing audacity, that I didn't complain. Then you have a new baby and are otherwise occupied so it was kind of pushed aside. Years later I'm still very very angry .... no-one has the right to perform a medical procedure without your consent if you're able to give it.

So many awful stories ..... Dannielle, so very sorry about your daughter. It's wicked when her death was avoidable.

I don't have much else to add except that I wholeheartedly agree about the communication issue and how the way some women are spoken to is almost infantile. Sometimes it's more a case of being told 'this is happening, I'm booking it in, here's a leaflet about it' than actually giving women a choice. I had my first child at 18 and I was too shit scared to even ask what a sweep entailed, I was just told I'd be having one at 41+1 and she'd see me then. Fortunately my son arrived the day before spontaneously, anyway.

Some women just don't have the confidence to ask 'why, is this necessary, and what are the consequences if I say no?' - which is absolutely fine - but health care professionals need to be more willing to say 'this is what I'd suggest, this is how it works, the consequences of not having it done are..., have a read of the information and think about whether you want to have it done or not'. Far too many women are given sweeps based purely on the fact they're overdue, if there's no risk to the mother or baby from waiting a bit longer to see if it happens spontaneously, then they should be told that and given the choice to take it or not.

I've always had good continuity of care here, never had to see different midwives throughout, however I will this time as my MW goes on maternity leave soon. My subsequent two MWs were also much better at communicating things - wondering if a lot of it is to do with training, as my first MW was nigh on retirement and very old fashioned about things. I like that in some respects, but they do sometimes tend to have an air of 'I've been doing this years, you should do as you're told' about them, especially with younger mothers.

In regards to national standard notes - there are some. However trusts are businesses and can choose if they use them or not.

People really need to bear that in mind - Foundation trusts in particular have an awful lot of autonomy. So for example, one hospital I worked in bought in the NICE guideline for induction guide for women so we could give it to people to read. Hardly anyone wanted one when offered so they stopped. So that meant the few that did want one couldn't have one.

Case load/domino/evening appoinntments and so on would be utterly brilliant but I have no idea how they could be staffed. Covering the 24/7 acute services is a real challenge as it is. Goes with the territory of reduced midwife numbers and the face that loads and loads of midwives have children. It is a real challenge.
Some trusts try to implement a more 'drop in' type service and they tend to be either very well used or very badly used. Perhaps there are more flexible and new ways of offering the service whilst still meeting the needs of a big group of women who like it as it it.

I'd also be concerned that if evening services were introduced employers would put pressure on pregnant women to take no time at all for their antenatal care - and we are entitled to this in law and I believe it is a basic issue of equality.So that might need some careful consideration. I hear from woman they are already under pressure to not let their pregnancy in any way encroach on their working lives and I would hate the services to compound that.

Lots of really interesting points in this thread I hope MNHQ do good work for us

Is there a concern that offering more dietry advice would put extra pressure and guilt on women? I hear some units have slimming world affiliated to the antenatal clinic. I am unsure how I feel about that. There was a lot of bad feeling when the breath test was trialed in an area I know of [to offer accurate monitoring of the effects of smoking] so I am very aware thatwhat is advice and support for one women is more guilt trip and pressure for another.

My sympathies to all those with hard and sad stories.

Rushing to get this done before the deadline, so haven't read through all the posts, or even the entire Draft.
But my two cents' worth:
In relation to page 4, point 5: in my experience the risks of VB (and I'm talking general risks, not in the case of a woman with GD, high BMI, etc) are not presented, whilst the risks of ELCS are magnified and conflated with the risks of EMCS. Very nice to say that women should be able to make informed decisions about their care (and I include choice for delivery in this), but unless the risks and benefits of ELCS and VB are presented fairly and dispassionately with no hidden agenda, a woman will not be able to do this.
I guess this is a related point, I believe there should be more emphasis on the individual history of a particular woman and what the risks are to her in this particular pregnancy of a particular mode of delivery. It seems to be very common that if something is not on the 'official list of potential complications' - e.g. GD, high BMI, etc - then it is ignored. I'm talking about things like previous birth injuries, continence issues, hypermobility, maternal age. These things DO make a difference to the success of VB, yet they are often downplayed or dismissed outright.

Danielle so very very sorry to hear of your loss.

Maternal requests for CS should be dealt with at booking.
It is barbaric to force a pg woman through 7 months of distress and vulnerability and feelings of powerlessness. Most maternal requesters are clear about their position and reasoning at the time they find out they are pregnant.

In this day and age a4 messy handwritten maternity notes are ridiculous. I was also nervous about the hospital/midwives keeping hold of my maternity and labour/recovery notes as we had a bad experience and would like to follow-up.

For those having their 1st baby there is no list anywhere telling you when you should be having appointments/blood tests/check-ups etc. My midwife wrote an outline of appointments for me on the back of my notes, but I know that no-one else in my NCT group was given this.

There was a severe delay in finding out my blood type inc. Rh+/- due to 4 different mistakes with 4 different blood samples (that I had to keep taking time off to give) by 3 different medical professionals.

When I presented at the Delivery Suite with PROM severe staff shortages meant we waited over 48 hours to be induced, risking infection. More midwives would be the key thing for me.

I've had to wait over four hours for my consultant appointments, even at 30 weeks plus. No children allowed so thank god I have childcare, no idea how women who do not have childcare manage.

Haven't yet read the document but I would like to see all pregnant women being offered a hypnobirthing CD in their antenatal packs. Hypnobirthing has a massive effect on a woman's confidence in labour and birthing, which has a concomitant impact on the outcomes for mother and child. Even when labour presents complications, as in my case, the added confidence can enable women to remain calm and in control.

Midwives during both my births were surprised by how well I handled every stage of labour, and I firmly believe that that was down to the hypnobirthing preparation, not my own inbuilt wizardry!

I'm sure there will be evidence somewhere pointing to huge NHS savings to be made - more confidence leading to fewer interventions, leading to less expenditure, that sort of thing. I don't know where to find that sort of info, but I'm sure someone at NICE who gets paid to research this stuff will know!

I only read the summary on page 4, but one thing that I think is really important is for midwives and doctors to have your pregnancy and birth notes in front of them when seeing you for subsequent pregnancies. In my 2nd and 3rd pregnancies I've often been asked detailed questions about my previous pregnancies (exact nature of particular problems I had, estimated blood loss, etc etc) and to be honest I just can't answer some of them accurately. I feel that some women may completely omit important information about their previous pregnancies (either by accident or not) which could have a detrimental effect on the care they receive.

In a nutshell, my dream for pregnant women includes...
Midwives having time to meet women in a respectful manner, so women feel they are welcome to ask questions and midwives can explain the different options without time contstraints.
Midwives being the primary carers of pregnant women, with doctors brought in as and when needed. Less Dr/Midwife hierarchy.
Enough midwives available so that women can have one or two known midwives through their pregnancy, birth and afterwards.
Honesty from HPs who are advising women, even if it is hard to say.
Women being supported in making decisions for themselves rather than following guidelines based on defensive or standard practice.
I could go on, but in my work with pregnant women these are the things that are most frustrating for them.

lil I was coming on here to say exactly that! I've just had an antenatal clinic appointment with a registrar due to a previous section. She, in fairness, listened to me and didn't try to sway me too much from another cs (although I won't get a decision until 34 weeks in case I change my mind , given that I've had 4 years to consider it I don't think that's likely!) but I have to go back in 6 weeks so that I can go though my previous notes with the consultant! Why can't notes be made available for appointments where they are obviously relevant to save my time and theirs?

I do feel very lucky reading some of the earlier points though - I've seen the same mw every time I've had a community appointment, and she's been very supportive. What does annoy me though is that she doesn't take bloods from me - I have to make a trip to the hospital for that and wait for ages to see a plebotomist for that pleasure!

One more point - accurate information on formula feeding should be easily available and shouold be provided to women who request it without judgement. For medical reasons I suspected I would be unable to exclusively breast feed. Indeed this was the case. I struggled to obtain information on safe preparation of bottles antenatally. I was repeatedly told that they had no stocks of the leaflet in question. The MW who eventually gave me the information, even though she knew of my medical problem, stated that giving me the formula feeding leaflet went 'against all her natural instincts'. Nice. Not.

So far not great experiences. First pregnancy, booking in appt at 14 weeks...first scan not til 17 weeks...baby dead (mmc, no symptoms, nice bump, no idea) Midwife didn't even ring to find out why I didn't go to see her at allocated appointment, and I was too devastated to ring her to explain.

This pregnancy, phoned at 4 weeks pregnant for a booking in appt (could I have rung any earlier..no). For some reason, they 'lost' me in the system (they have no explanation) and booking in appointment is at 12 week 4 days. First scan will be 2 - 3 weeks AFTER this. I have rung to complain/explain how anxious I am following first pregnancy and told, well this is the appt that you have. This also means that I will miss the window for nuchal fold testing (I'm 38) and was told, oh well you can always do the blood tests instead.

Managed to get an 8 week scan, through another consultant doctor I am seeing for a (we think) related blood condition. Did see heartbeat. This doctor wanted me scanned every two weeks up til 12 weeks, but antenatal/booking in won't accommodate this and say that 'the system is the system, you have to go through it'

I have no idea where to go with this. Can't afford to go private. Feel completely and utterly left high and dry incredibly worried and anxious. The 5mg Folic Acid that this doctor prescribed have now run out, and my doctor won't reply because he has no record on HIS records of why I was prescribed them.

NHS not filling me with much/any confidence. It's no surprise women who have £ go private frankly.

I have mobility problems and use a wheelchair so this influences some of my care.

Some of my care has been great, I had a stillbirth two years ago and I am seeing all the professionals I saw in that pregnancy, they have all been very supportive. I have found in both pregnancies I have been signposted to other agencies in an almost perfect manner. I would hope this was part of NHS wide policy and not a lucky fluke of the area I live in.

The anaethetic review I recieved was also exemplary - the anaethatist had researched my condition and fully understood both my concerns and how my condition effected me. I was very very impressed. Again would hope this was common practice.

Last time although knowing I have a joint condition that was severly effected by the pregnancy I did not get to see the ante-natal physiotherapist at all. I was lucky that another phisiotherapist was abel to supply me with a support belt for my pelvis or I have no idea how I would have coped. I also although being pretty immobile was not picked up on as at risk of VTE until 28 weeks. I was told I needed support stockings - I was given no indication of how to get them, what type I needed or any other help. I ended up hunting round different pharmacies to try to find someone who knew. Not even the practice nurse at my GP'scould help me. At £10 per pair they were difficult for me to afford, thank goodness for the health in pregnancy grant - which no longer exists. If VTE is such a worry why is there no help in acessing preventative treatment - I have been offered nothing this time either, still don't know if the stockings I have are adequate but have just been told to use them again as if it's not important. I am confused!

I'd also like to know why it is assumed (not by the midwives but by whomever buys the furniture) that all pregnant women will be abel to use two steps up to a bed. In the later stages of pregnancy when I can no longer stand nevermind lift a leg my husband has to lift me up and then back into my chair.

Basically it is not enough that the building is accessible - all equipment a pregnant woman is supposed to use needs to be acessible too.

Finally, there are some brilliant partnerships with social enterprises in my local area for things like breast feeding support and ante natal classes. These are held upstairs in a building without a lift. This is very frustrating as I can't complain - they arn't NHS services, but they are what is on offer and are promoted by the NHS, nice cop out of the DDA there!

Oh and I'm sick of being told how to give birth, funnily enough I know my body - and I've done it once already. If I say it will be dangerous labouring on a bed becasue I will throw myself off and I'm going to want to be on my knees and I want to know exactly where my legs are and be abel to feel them, so no damage can be done - why is the answer always 'have an epidural and give birth reclined'? EVERYTIME!!!!! It certainly feels like I'm being bullied into something that will make life easier for staff - not better for me.

I'm a bit late finding this so can't write all I would like, but really feel strongly that this is a good opportunity to bring up the consistently poor treatment that so many pregnant women suffering from severe NVP and HG receive.

This is in relation to point 5 which states: "Pregnant women are offered evidence-based, balanced and consistent information which they understand, have the opportunity to discuss, and which enables them to make informed decisions about their care."

This is very clearly not happening for women suffering from severe NVP (which affects their life on many levels) and HG.

I suffered from life-affecting NVP (possibly HG) last year and despite being visibly dehydrated and losing weight consistently into my second trimester I didn't receive the help I needed until 22 weeks. I was literally bed bound for the first trimester and mostly housebound until 22 weeks. Movement, smells, even talking could set off a bout of vomiting, or dry retching several times each day and every day was a battle. Yet despite returning to my GP surgery and seeing different GPs on several occasions, I was simply told it was "normal".

It is only since my pregnancy is over that I have been able to carry out research and discovered that many medical studies have shown early treatment of severe NVP with certain medications to be safe and preferable to leaving it untreated.

I am a member of the Pregnancy Sickness Support group on Facebook and am working on a book about severe NVP and HG and the charity and support group have been a great help in my research. It seems to be the typical experience of women suffering from severe NVP and HG that their healthcare providers are unaware of the many studies available that cover the best practises for these conditions and so they receive unsympathetic care and are often left to suffer alone needlessly.

Many women describe the persistent nausea as being just as traumatic as the vomiting, and the isolation and stress caused by it can be immense. Many suffer from PND and PTSD or some level of anxiety during and following their pregnancy, often being terrified of falling pregnant again and having to face it all once more.

There is a real need for more awareness of the negative impact of persistent and severe NVP and HG, so that women whose lives are affected by this so deeply are no longer told that "morning sickness is normal" and that there is nothing they can do.

It is the hope of so many women that they would receive "evidence-based, balanced and consistent information" and be given the chance to discuss it rather than having to simply accept what they are told. It could make severe NVP and HG far more tolerable if pregnant women suffering from them knew they would get consistently sympathetic and informed care.

Hello again,

Thanks so much to everyone for sharing their experiences, especially those of you who had sad stories to tell. We will collate your feedback and transmit it to NICE, and we will keep you updated with news about what happens next.

MNHQ