Facing Uphill Battle & Hoop Jumping - ELCS

[WaitingForNormality]

After a bit of advice as to whether this is normal NHS burocracy and box ticking, or if this is unusual and unreasonable...

Pregnant with #2 and from 1st appointment (booking with midwife) expressed request for elective section for birth. Following 1st birth (2016) I suffered from an anal fissure (basically a tear in the bum - it's even less fun that it sounds!) which I still suffer with now, but manage well with daily stool softeners and diet. I requested a section in order to avoid risks to any further potential damage/trauma to that area which could arise from pushing during labour (which triggered the original fissure) or, worse case, a significant 3rd/4th degree tear which would result in another tear in that area.

Had consultant appointment at 19wks (following midwife referal after my booking app) and he originally listened and agreed straight away. I was so overcome with relief that I cried. Only, he then called back 10mins later to say that it needed to be considered by a multidisciplinary panel first and he would let me know in 2 weeks what the outcome was. 4 weeks later I had another appointment, where a different consultant said the panel had met but didn't make a decision as they want evidence from a colorectal surgeon that c section would be beneficial - this, they said, would take a further 4 weeks and booked my follow up consultation.

Just had that follow up and now it turns out they're requiring me to have a separate consultation with the colorectal surgeon who has been unable to say if it would help or not. This is scheduled for another 5 weeks away.

I've explained that regardless of what the colorectal surgeon says (i.e. that a section would not make the fissure worse or better), I am requesting a section as its my view that no one can promise me I won't suffer additional tears/trauma from a vaginal birth and its a risk I'm unwilling to take. I've researched extensively and medical studies show that tears in the area are the single biggest factor leading to anal incontinence, so you can see why I'm cautious about any further harm in that area!

No one has mapped out the route to a decision for me (despite asking) and I feel I've got no idea when or if they will agree to a section. I will be 32 weeks by the time of the colorectal appointment and with each passing week my anxiety is rising. I honestly feel trapped, and that I have no say or autonomy over my own body.

Is there anyone I can complain to or help to push this process along? Does anyone have any experience with this and hints to help me navigate through this?

Terrified it will drag on indefinitely without a decision and I'll end up being forced to labour 'naturally'.

I'm not sure this is normal. I requested csection and it was booked at 20weeks, signed off by the consultant.

It may be normal for your hospital specifically. How many weeks is it until you're 32weeks?

If that's quite a wait can you ring midwife to request another discussion with your consultant. Tell them it is your birth preference and whatever the surgeon advises wont change your request or preference. NICE guidelines are in your favour.

Contact birthright if you want some advice on your rights to a csection and you can quote them on the phone to consultant.

Thanks for replying @Screwcorona

I've got a midwife app early next week (28wk app) so I'm planning to have a big discussion with her. She is actually highly supportive of my request, but annoyingly it isn't ultimately up to her, but I am going to see if she could write a note/contact the consultant team to confirm my distress and anxiety etc.

I just feel so left in the dark about it all!

Ah I'm 28 weeks next week! Should hopefully meet our babies pretty much the same time.
That sounds like the best start, at least if she can get the consultant on the phone with you you can reiterate how you feel about this. Ask them if it's that they dont want to agree it for you? As you are able to request being passed to another consultant.

This is very strange, you shouldn’t have to jump through all these hoops! NICE state that maternal request is a valid reason for an ELCS

OP you shouldn’t have to jump through hoops at all. As PP above said, maternal choice is valid, and is enough! No matter what they say you can request a CS date. Usually this is set at 34-36 weeks consultancy appointment, for 39+ weeks EDD (as per NICE guidelines).

For what it’s worth, I’m also 27 weeks and weighing up ERCS versus VBAC, I’m a bit complicated (risk factors, allergies, likely nicu baba) so my preference will be to try VBAC should I go into labour naturally but if not progressing (no induction etc) straight to CS. I’ve been told a date will be set for CS for the latest they will let me go (for me 39 weeks due to history. In reality I’ll likely be EMCS before then).

@ridingonaroomba

This is very strange, you shouldn’t have to jump through all these hoops! NICE state that maternal request is a valid reason for an ELCS

This but it will be some internal budget hoop-jumping thing. Hence why he immediately agreed (he used to have the authority to do this) then phoned you back (some new diktat to save money). Allegedly the NHS is the envy of the western world...

What a waste of the co-rectal surgeon's time...

20 years ago I insisted on an elcs as they couldn't guarantee me an epidural if I went into Labour naturally. I also had a history of large babies. Guidelines were on my side but they made me see 2 people before agreeing.

Update - I've had enough of the anxiety and phoned the maternity obs dpt at the hospital and basically have demanded to speak to another consultant urgently. Got appointment for Monday lunchtime for a phone call where I'm going to try yet again to make my case. Meanwhile, the colorectal surgeon appointment is still going ahead but not for a few weeks like I mentioned before - I totally agree with PP that it seems a monumental waste of everyone's bloody time! Surely during a pandemic nhs have more important things to do than conduct endless fucking consultations about elcs!?!

Will let you know how I get on but I'm not holding my breath!

Good luck, this is all utterly outrageous that you have to go through this. Wishing you all the best xxx

Glad you're getting listened too and 🤞 hope they just get this booked for you. It's so wrong for them to drag it on weeks and cause so much stress.
Will keep following in the hope you get good news monday

Update - had another consultation yesterday.

It was pretty horrendous to be honest, and I ended up crying down the phone. I know that's no unheard of, but I'm just not one of those people that cries in public at all so it felt like a big deal to me that my anxiety and frustration had reached that point. The consultant was (IMO - though appreciate I'm emotional about this, so please do let me know if you think she was reasonable!) brisk and unfeeling. It was very much a case of me having to 'fight' for a section the entire time, and that's really tough when up against someone who clearly has more medical knowledge than me!

When I asked why I am due to see the colorectal surgeon she said it was because they needed their opinion on whether a section is medically indicated (they've been chasing the colorectal dpt for 9 weeks for this already). I clearly explained that regardless of their opinion I am requesting a section - to which she said she already knew the colorectal would say my condition is not indicative of a c section as she'd seen this before (so why continue to send me there and waste more time?!). She explained that 'too many' (her actual words) women ask for c sections and rarely understand the risks involved and they can't all get sections. I mentioned that, having spoken already with 3 registrars from her team, I'd been well versed on the risks involved and still wanted to proceed. She then said 'just because you ask me to remove your appendix doesn't mean I would though' - which I felt was rude, unnecessary and also a terrible analogy as the two are not relatable! I continued to protest that I knew the risks etc. but wanted to continue.... and that as no one could guarantee me a very straightforward VB with no tearing or trauma to that area, the section was my only route. I then mentioned transferring trusts to request a section in a neighboring hospital trust instead as the waiting and hoop jumping means I'm not enjoying this pregnancy.

Eventually she said that this would become a 'maternal request' section (I'd already assumed it was!) and I need to see another consultant to get their sign off (in addition to hers) and so she is setting me up another appointment with a different consultant for a few weeks time. I so hope that this final consultation will bring about a decision on this - I'm so sick of it all now!

OP, this is absolutely awful. Not sure if the policy is the same from trust to trust, but the hospital where DD was born automatically offers an ELCS after a third degree tear. The perineal midwife discussed this with me at my appointment to check on my tear - and I’m not even pregnant again yet. I also have IBS related symptoms so she said an ELCS is even more advisable in my case. I’m so sorry you’re being put through this!!

Also, I would seriously consider changing trusts if I were you.

Gosh how stressful. As you say, you’d been happy for this to be considered as a ‘maternal request’ section from the start. It seems like you’ve got stuck in internal nhs wrangling tbh between those the particular route your request needs to take. I’m not meaning to minimise or excuse it, as it’s very worrying for you to be left in limbo, but hoping that it makes you feel better. They cannot refuse a maternal request I believe, or if they do, they must refer you to a consultant who will do it. So don’t worry, it will get sorted

@Lemoncheesecake20 I agree. After the call (and when I'd calmed down!) I kept thinking about it, and I can only assume that despite me making a maternal request via that route originally they had tried to see if it could be classified as a medically indicated one instead - and the only reason I can see they would bother doing this for is to make their c section statistics look better? Completely guessing here though, so I may well be wrong. But I know a lot of trusts are keen to keep their ELCS rates low as possible for whatever reason!

But I know a lot of trusts are keen to keep their ELCS rates low as possible for whatever reason!
Yes, that’s definitely the case. I had a choice of a trust that has very low C section rates vs a trust with high rates and I deliberately chose the latter- so I knew I’d have less of a battle on my hands if I wanted one.
I’m especially angry on your behalf because they are, as always, emphasising all the risks of a C section, but not saying a word about the risks of a vaginal delivery - which we know are also many!

@EarlGreywithLemon - Oh yes, of course! Every consultant/registrar has pressed the point that a 'STRAIGHTFORWARD VB' is less risky than a c section. No thought or comment is ever given to the fact that many do not have a straightforward VB, nor do they answer me when I ask whether they can guarantee mine would be a straightforward VB (obviously, they can't guarantee this, and that's wholly my argument!). I had one registrar tell me as part of the 'risks' that my tummy might not look great afterwards with a scar and an overhang belly .....Now I know this is the case, and I'm not buzzed about it, but I question whether this purely cosmetic outcome should be discussed at the same time as raw medical risks!?

I have not yet had one registrar/consultant actually explain an objective risks vs pro's. Instead it's been totally focused on negative risks and quite blatant attempts to dissuade me from making this choice!

I'm shocked at how that went. I'm so sorry you're going through all this, when is your appointment with this second consultant?

It sounds like it is going to be agreed but it really shouldn't be this difficult especially after the last birth. If you feel like you can deal with the mental load of it it could be worth complaining to PALS about the process you're going through, regardless of whether it gets agreed or not. There is normally a dept in your trust and they step in really quickly. It's like these doctors havent heard not to out pregnant women under undue stress 🤔

*put

[quote WaitingForNormality]@EarlGreywithLemon - Oh yes, of course! Every consultant/registrar has pressed the point that a 'STRAIGHTFORWARD VB' is less risky than a c section. No thought or comment is ever given to the fact that many do not have a straightforward VB, nor do they answer me when I ask whether they can guarantee mine would be a straightforward VB (obviously, they can't guarantee this, and that's wholly my argument!). I had one registrar tell me as part of the 'risks' that my tummy might not look great afterwards with a scar and an overhang belly .....Now I know this is the case, and I'm not buzzed about it, but I question whether this purely cosmetic outcome should be discussed at the same time as raw medical risks!?

I have not yet had one registrar/consultant actually explain an objective risks vs pro's. Instead it's been totally focused on negative risks and quite blatant attempts to dissuade me from making this choice![/quote]
Ha! I’d change some of the issues I’ve had post VB for an unsightly scar any day of the week.
I completely agree - and as a result lots of women are shell shocked - and even blame themselves - when their VB doesn’t go to plan. Completely anecdotally, but of 6 of us in my NCT group one was a planned section (twins) and one a completely straightforward VB. The other 4 were VBs with complications, ranging from episiotomies, to ventouse, forceps, PPH, third degree tears and one EMCS after failed instrumental. Clearly our babies didn’t know their VBs were supposed to be the safest way out!
Did your fissure “count” as a tear (it obviously is, but did they call it a tear) and, if so, of what degree?

@EarlGreywithLemon the fissure itself doesn't count as a tear to the obs teams because it didn't go all the way through the perineum area. I had a small vaginal tear along with the fissure. But also after VB I had terribly pelvic floor weakness for quite a while too and the usual issues of sex etc being uncomfortable for a while.

Our NCT group was the same. 10 of us and my birth looked the most straightforward and least traumatic even with my issues afterwards! One had ELCS due to breech presentation and she was by far the quickest to "bounce back" in terms of feeling human again than the rest of us

I was wondering because for tears there are stats for repeat tears in a second VB. I haven’t seen anything for fissures annoyingly.
Very best of luck for the next appointment! I’d second what the PP said about contacting PALs if necessary, or even changing trust. Though I’m sure that’s stress and disruption you could really do without right now!!

@Screwcorona My DH has also mentioned getting PALS involved but I wasn't sure if it might make things worse? Eg. Would it piss the obstetrics dept off even more and make them even more reticent? I know this shouldn't be the case ...

I'm not even totally sure what PALS are for? I've checked our trusts website and the pages on PALS but the info is so vague and basic. Any guidance would be helpful! Ultimately I'd like to pursue a complaint regardless of whether I get the section agreed or not, as I don't think it's fair that other women in future are put through this circus!

This is absolutely unacceptable behaviour by ‘professionals’. You have to take a deep breath and be a right PITA about this now :) it’s hard when you’re so emotional (understandably) but I think you need to keep repeating that you would like a c section and dismiss whatever it is they are saying to you in the way they have done to you. You don’t need to be reasonable at all. Do not accept that it won’t get agreed - you need to make sure you get what you want. Make the complaint and tell them you are going to.

This has made me so angry for you. I had a EMCS for my first birth (heart rate of baby dropped when I was induced) and this time I said I wanted a c section at my booking appt and was given a date at 20 weeks without the risks even being read to me. My consultant had the notes of my birth reflections appt after last birth and said ‘I can see you want a c section I’ll send you a date later this week’
It is disgraceful that you, for medical concerns you have, are getting treated this way when I, who just doesn’t really want to give birth naturally and never did, can have what I want without even a discussion.

Go to battle. You shouldn’t have to fight but if you do go in there with your head held high and give them hell!

Corr proper rant- 37 weeks pregnant and very cross on your behalf!!!