Refused El LSCS at Chelsea & West - advice please.(62 Posts)
My wonderful sister, who is currently 22+5 with first baby has a rational and coherent evidence based reason for requesting an Elective LSCS. Both she and her husband are doctors, and she is making an informed decision which she has painstakingly researched prior to coming to her decision.
She met with her consultant yesterday, who was exemplary in his professionalism, listened to her case and engaged in empathetic and highly respectful discussion with her and her husband. He stated that her evidence was correct, her reasons level headed and rational and that in her case, he agreed with her decision. He would in principle like to support her decision, but in practice, there is a blanket ban on C&W performing Elective LSCS for maternal request.
I do not wish to go into her reasoning for asking, but needless to say, she does not fall into the C&W criteria for El LSCS. He is aware of the NICE guidance, but C&W choose to ignore the guidance.
She has been referred to the Perinatal Mental Health Team, but she is neither Depressed, Anxious nor in need of mental health support. Her argument is rational and evidence based and this fact can not be changed. She is willing to attend but not willing to lie or make up anxiety that does not exist.
Has anyone else been in a similar situation. She is going to write to the Obstetrics department, the Chief Exec and PALS. She will comply with the perinatal Mental heath assessment and her consultant has agreed to see her 10 days after the assessment to re-evaluate the situation.
Does anyone know what else she can do? She feels so strongly about this, not to mention let down be her profession.
Many thanks in advance
Hope you sister is ok.
Hmmm it's sort of hard to comment without knowing (i) what her reason for asking was, and (ii) what C&W's criteria are?
You say C&W 'choose to ignore' the NICE guidance - I find that a bit hard to believe?? Did the consultant say that? Which consultant was it (I had my first baby at C&W privately, consultant led, and will have second there in a few months). I have had friends who have had elective sections there as a result of previous large babies (and one with shoulder dystocia), but assume this is not the type of reason your sis has?
On the face of the post above though, the consultant basically was saying that he/she understood the arguments but his hands were tied due to hospital policy because she doesn't fit their criteria? Sort of fair enough - I mean obviously not the desired outcome for your sister, but sounds like he is applying the rules (though acknowledges that they are not necessarily 'right'). In the same way that your sister doesn't want to be dishonest with the PMHT in order to get her desired outcome, sounds like the consultant doesn't want to bend the rules in order to achieve what she is asking for.
It sounds like your sister is doing all the right things to get the decision revisited though - perhaps something more positive will come from the second meeting with the consultant? Again it is really hard to comment without knowing more background as on the one hand it sounds like her reason is not a medical one, but on the other hand you say she is not anxious etc which from what many ladies post on here is often a real factor for wanting a section.
The fact she and her husband are doctors is of course totally irrelevant.
Chelsea and Westminster is behaving like a rogue hospital - if it is knowingly ignoring NICE guidance and something goes wrong, then the hospital will be liable.
I would write to the chair of the Trust and make an appointment with the local MP and the hospital risk manager.
You can formally decline consent for vaginal examinations, induction, augmentation and instrumental delivery. In such a case, they would have to make a plan for delivery that enabled birth to proceed safely.
BUT it is shocking that you should have to play brinksmanship games. The maternity services are in the dark ages.
Ushy - sorry if I'm being dim but do you mean that by formally refusing consent for those interventions, you would hope to force the hand of the powers that be at the hospital into allowing an elective c section?
Awful that it has to be like this at all! Chelsea and Westminster should be abiding by sound evidence based guidelines from NICE. Why is it even possible for them not to?
I hope your sister gets the birth she wants OP.
You have a right to decline interventions in the same way that you could decline blood products. There has to be a plan in place to deliver your baby in the safest possible way taking account of your wishes.
This is why it is useful to copy your request to the hospital risk manager with the relevant NICE guideline that is being ignored.
Check it out yourself - I'll say no more
If both parents are doctors they are, presumably, relatively well-paid compared to most.
If the local NHS choose not to fund CSections for whatever reason your sister has (and at the end of the day tough choices do have to be made on that the same as any other state-funded healthcare) then surely they could simply go privately?
They'd still be able to access NHS antenatal and so forth I believe so it would just be a question of the op itself.
Ginger That is not the point - they pay taxes and are entitled to care in accordance with NICE guidance.
I don't know if this is in anyway relevant, but a few years back they were publicly criticised for having a very high cs rate. Wonder if it is possible this is some kind of reaction to that? Will see if I can find a link, it was in the evening standard around 2010 I think.
Private cs does not reflect the cost of cs to the NHS (a few hundred quid more than VB provided the VB is absolutely textbook). A private birth in London costs c.£10k a huge amount of money even to 2 doctors. My ELCS was a bargain to the NHS compared to the Keillands forceps they coerced me in to first time round (and that's before I've come to a decision about whether to sue for the damage to my DD).
Ushy is right, they are entitled to the same care as everyone else and that care should be best practice, i.e: in accordance with NICE.
Advice-wise she needs to keep up the pressure - do as the above have suggested in terms of letters of complaint and keep copies of those letters with her medical notes.
She is entitled to a second opinion and should get her midwife and GP on side to ensure this happens asap = she has plenty of time to get a decision to go her way at the moment.
Personally I would add pressure to the consultant/s I saw and in the letters advised above. Make it clear she will sue if any of the risks she has cited come to fruition. Make it clear she is being denied the care path of her choice.
I would also take my own set of notes at every medical appointment (makes people much more careful about what they want to be on record for and shows they mean business.)
It is a woeful way to have to treat caregivers and a dreadful way to go through pregnancy but if this birth choice is as important to her as you have made out then it is pretty much the only way of getting it on the NHS.
In this situation, and because the woman concerned is a doctor so is educated enough to fully understand the situation, without question from those treating here, I'd push the legal implications of what happens, if the rationale behind her decision does happen when they are putting blanket bans against NICE advice in place. That might make C&W sit up and listen.
My rationale is that, even if she has no mental health problems, the question of whether this has the strong potential to cause them, if she is forced to give birth in a way she does not want is a compelling one. Remembering here that one of the key things that causes women to develop severe anxiety over future births (secondary tokophobia) is medically recognised to be a traumatic previous birth!
And then there are the obviously physical possibilities of complications, which I don't think I need to go into here...
Imho, decisions like this are actually leaving the hospital wide open to someone in the future taking them to court, since the potential for birth injuries or trauma is actually pretty high all things considered - particularly if it is a first time mother over 35 (if your sister is a doctor, I think this is more likely hence why I've mentioned it). Especially again, several studies seem to show a link because the way women want to give birth, and the way they give birth being very important; woman forced to have a vb against their wishes, fair worse than woman who planned and wanted a vb.
Of course, there are risks associated with having a CS, but in effect what you do when you request a CS in this way is choose which set of risks is acceptable and which set is not. In any other medical setting, you would have a choice of those risks if the cost difference was similar (its worth pointing out cost is dismissed by NICE as being irrelevant and shouldn't be used as a reason to refuse an ELCS because it is small).
Because a VB is deemed natural the idea of consent isn't even considered, because you have to consent only to medical intervention. The problem here being that once you go down the route of a vb, in certain circumstances, consent is pretty much a forgone conclusion that a woman really have very little input into because it becomes an emergency situation where to say no could endanger her life or that of her babies. I do this this is why consenting to a vb needs to become recognised because of this.
And this is why I think whoever is making this decision at C&W needs to be strung up as it is not in the interests of the patient and is in the interest of their figures (Yes they receive poorer ratings - and subsequently funding - for a high CS rate. Its not just about the cost of performing a CS which I think is something that is lost in this debate. And of course, public and press criticism. This is very much a political decision rather than a health decision). If we were talking about a woman having a ELCS on the advice of a doctor, I would perhaps understand the level of concern here more because it might be a reflection on doctors giving unnecessary CSs perhaps against the preference of the patient; but we are not in this case. And thats the trouble with these figures being presented in this way.
Isn't it about time we also got figures about patient experience and whether women felt that they were involved in the decision making process?
Good luck to your sister.
Why can't she just change hospital then to an area which will follow the guidelines? Also does she really really need a C section? Will she die without one? I suspect not.
The stress of being forced to jump through policy hoops? Knowing which hospital does have a favourable policy, because they are so untransparat about it? Its more than just about being 'life or death'? Why should she have to change hospital? What the guidelines actually there for? Whats the point in NICE doing research and reporting if they are just going to be ignored? Guidelines don't have to be followed in every case, but a blanket ban? Why shouldn't she have a CS if thats what she thinks is best for her based on a rationale argument; especially if she has a medical background and is better placed to understand the risks involved than perhaps someone who doesn't?
Would you like me to continue with reasons? Or are any of them acceptable to you? Frankly I don't give a damn whether they are given you are aren't respecting how she feels...
Incidentally, would they be refusing your sister's request if she was going private at the same hospital since they have a private wing?
If they wouldn't stop her, then that poses all sorts of potentially ethical questions in my head as to why. Would they take a risk they wouldn't take with an NHS patient? Are they more or less liable for legal action being taken? Are they respecting the wishes of private patients more than public patients? Is refusing an ELCS on the NHS a way to get more business for their private wing?
I think there are a few routes for your sister to explore here and put pressure on the hospital to reconsider their policy.
I'm assuming the reason is avoidance of possible pelvic floor damage? I can't think of what else it could possibly be, given the lack of info in the OP.
My guesses for the reasons would be: 1) permanent physical damage to mother (incontinence/prolapse/related pelvic floor issues) 2) damage to child (physical injury/brain damage due to oxygen deprivation) 3) psychological damage 4) chances of successful 'natural' birth being less than [50%] for the mother 5) recovery from CS versus reovery from instrumental delivery given the statistical chances of one (see point 4).
I'm guessing points 4 and 5 are the most salient and the others flow from those reasons. Weighing up the chances of certain 'bad' things happening (based on clinical evidence relevant to her particular facts and circumstances) she has decided CS is the best mode of delivery for her and the consultant agreed!
I was coerced into a Keillands delivery so St Thomas's could retain their better-than-Chelsea-and-Westminster CS stats. This sort of policy makes me VERY VERY ANGRY.
"chances of successful 'natural' birth being less than [50%] for the mother"
No - the vast majority of healthy first time mums giving birth away from a CLU will have a birth which will leave the mother with no ongoing problems requiring further treatment. For a healthy mum having her first baby, giving birth in a birth centre within a hospital or out of hospital in a midwife led unit, the likelihood of a completely straightforward birth (ie, no epidural, no syntocinon, no instruments) is between 62% and 70% (higher for a free standing midwife led unit). Between 5% and 7% of these women will have a forceps delivery (of which the vast majority will be straightforward and not require further treatment or lead to ongoing problems), and about 6% will involve an unplanned c/s.
This: research from the US suggests that double the number of healthy women having planned c/s will need readmittance to hospital within 30 days of delivery when compared to a similar group planning a vaginal birth, even in a study population where rates of emergency intervention in labour are very high. Rates of admission to high dependency care are signficantly higher for low risk women having planned c/s than for healthy women attempting a vaginal birth in a midwifery led unit, in hospital or out of hospital.
All that said, if she's decided she wants one, on the basis of the 2011 NICE guidance she should be entitled to one, whether she thinks she's got a case on health grounds or not, (and I don't think that the evidence in support of planned c/s for healthy women in strong, particularly when they are considered over a woman's lifetime, if she has more than one child). Good luck to her in getting what she wants.
I'm left thinking - lucky for your sister that both she and her DH have (presumably) extremely well-paid and secure work, as at least in the event of a refusal she can pay for a private C/S. She wouldn't be alone in having to dip into her pocket to get the birth she wants because the NHS is prioritising wider health outcomes over patient choice and preference. I have had to do the same (high risk homebirth - had to pay IM because of lack of support from the community midwifery team). It sucks, but it's the future.
Depends how you draw your sample minifingers.
Looking at the stats for a 1st time mother of a certain age, BMI and medical history she may well have statistical success rate of less than 50% for an intervention free birth (and I include instrumental deliveries as intervention). The experience of a MLU (eg: lack of epidural pain relief) is not one that everyone wants - anecdotely it is usually people who have had straightforward births and recoveries who cannot understand the choices of the OP's sister.
Having had both instrumental VB and ELCS and knowing Drs who have witnessed both I completely understand the choice of planned surgery over instrumental delivery due to the relative risk of permanent damage and the recovery involved.
"Depends how you draw your sample minifingers."
You are right that fatter and older mothers are more likely to need intervention in birth, even if they are categorised as low risk.
"she may well have statistical success rate of less than 50% for an intervention free birth"
Of course if she has a planned c-section she has a 100% chance of having major intervention in her birth involving a full-thickness wound which will make future pregnancies and births more risky. Most inventions in labour on the other hand are minor and don't result in severe birth injuries or have implications for future pregnancies or births.
Midwives also see a large number of births, from the uncomplicated to those that result in severe injury or death to mums and babies. And yet they are less likely to opt for a medically unnecessary surgical birth. I think it's not about what you see, it's about different philosophies. I believe that midwives have an understanding of birth which is shaped by a clearer assessment of issues surrounding risk as they routinely see the full range of experience, which doctors tend not to.
Minifingers "Most inventions in labour on the other hand are minor and don't result in severe birth injuries or have implications for future pregnancies or births."
Interventions in labour such as emergency caesarean and instrumental delivery have the worst outcomes of all modes of delivery.
The pecking order of risk is first spontaneous vaginal birth (great but you can't choose it), planned caesarean, then emergency caesarean or instrumental delivery and finally failed instrumental delivery and late stage emergency caesarean (with a high likelihood of serious long term damage to the mother and baby).
The OP's sister is clearly an intelligent woman and has decided that taking into account the risk factors that she feels she has, a planned caesarean would be best.
It is an complete insult that she has to have mental health counselling when she has made a sensible and rational decision.
Ushy I thought the NICE guidelines effectively put spontaneous vaginal birth and planned caesarean as equally safe, hence them suggesting women can request and elective caesarean
I think it says the risks and benefits of planned vaginal birth are of similar level to that of planned caesarean but obviously planned vaginal birth includes the possibility of an instrumental delivery or an emergency c/s or both.
Midwives also see a large number of births, from the uncomplicated to those that result in severe injury or death to mums and babies. And yet they are less likely to opt for a medically unnecessary surgical birth.
Is a non-argument for anything but choice. Why? Because of patterns in what obstetricians do themselves (or their wives do). Despite having all the same 'facts' as midwives about risks and benefits they do exactly the opposite.
If one method was significantly worth than the other, do you think we would see this pattern? Doctors are hardly a group who are likely to take substantial risks with their own health or the health of their own baby.
I think it's not about what you see, it's about different philosophies. I believe that midwives have an understanding of birth which is shaped by a clearer assessment of issues surrounding risk as they routinely see the full range of experience, which doctors tend not to.
I don't believe they have a clearer assessment or a full range of experiences; just a different one. Even if they see more negative or extreme outcomes that still part of the full range of experiences. Its also worth mentioning that doctors statistically tend to fall into the age group which is most likely to fall into the most extreme outcomes too; midwives statistically start their families earlier.
If you are talking about philosophy, look at the philosophy of how different people assess risk and what our priorities are. Some people are completely happy with the idea of 100% certainty of planned surgery as they are better able to prepare for this mentally as well as physically. They don't like to gamble. Whereas others would be happen to take the chance of risker possibilities of an EMCS or an instrumental birth.
Since there is no 'right' way to give birth, despite what a lot of people would have you believe, this is where personal circumstances and preferences should be respected. There is only a right way for each individual to give birth (which of course does includes the wrong way for individuals to give birth).
Plus its not just about physical outcomes either and I think sometimes people only want to focus on these...
Just a point of information: both DH and I are doctors in our thirties and while we manage fine, paying for a private delivery, even if straightforward, simply isn't an option financially. The same would apply to most of our friends in the same position. The OP's sister may well not have the option of private care.
"Interventions in labour such as emergency caesarean and instrumental delivery have the worst outcomes of all modes of delivery."
Yes - but it's still true that MOST women who have an emergency cs and MOST women who have assisted deliveries are ABSOLUTELY FINE after birth and so are their babies!
"The pecking order of risk is first spontaneous vaginal birth (great but you can't choose it), planned caesarean, then emergency caesarean or instrumental delivery and finally failed instrumental delivery and late stage emergency caesarean (with a high likelihood of serious long term damage to the mother and baby)."
Well it really depends on what outcomes you're looking at doesn't it?
And how many pregnancies the mother is planning to have.
And if you're going to say 'a high likelihood' I think you need to provide some figures as to my knowledge only a very small fraction of emergency c/s are associated with severe morbidity, whether done early or late on in labour.
"The OP's sister is clearly an intelligent woman and has decided that taking into account the risk factors that she feels she has, a planned caesarean would be best."
But the NHS is supposed to be providing evidence based care, and the evidence is not supportive of your view that planned c/s provides optimal outcomes for healthy women. In any case, this is a moot point as the NICE guidelines don't require a woman to provide independent evidence of this type, only to state that they wish to have a c/s.
Picklebean - a private c/s would cost you about £7K if done in an NHS hospital. I have yet to meet a professional couple on 35 to 40K a year each (so 70 to 80K of household income) who truly can't raise this much if they felt they needed to. God knows our household income is less than this, we live in London with three children and a good size mortgage, but have been able to raise this amount by loan several times over the past few years to pay for cars/new bathroom/work on house. Or are you earning much less than 40K a year each?
"Ushy I thought the NICE guidelines effectively put spontaneous vaginal birth and planned caesarean as equally safe"
Yes - for low risk women giving birth in settings where there are very high rates of emergency intervention (ie most CLU's) the outcomes for planned c/s may look comparably good. That's if we completely ignore the fact that most women go on to have a subsequent pregnancy, involving a reassessment of the relative risks of c/s, which increase through a woman's reproductive life, rather than decreasing as they do for mothers who have a vaginal delivery with their first baby.
The outcomes look very different when we compare planned c/s for low risk mothers with outcomes for women who intend to labour in low tech settings, where there is clear and marked evidence of significantly lowered rates of complications and emergency surgery.
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