Prolonged Pathway Leads to Maternal Request Refusal Policy – One Mother’s Story

Vicky Bullett 1Vicky Bullet, 32, gave birth to her daughter in October 2017, and she says NICE and NHS Choices offer false reassurances about maternal request caesareans, since NHS trusts are at liberty to ignore evidence-based national guidelines, and to refuse caesarean choice.

This is Vicky’s story:

I knew many years before I became pregnant that the only way I would be comfortable giving birth to my baby was via caesarean, and I was well aware of what should happen if I requested a caesarean, according to the revised NICE guidelines in 2011: “women requesting a CS who, after discussion and offer of support, feel a vaginal birth is still not an acceptable option should be offered a planned caesarean.

I was therefore confident that my birth preference would be respected at the nearby John Radcliffe Hospital (JR).

However, although the Oxford University Hospitals NHS Trust website had a leaflet about ‘Birth Choices‘, it only listed vaginal birth at home, vaginal birth in a midwife led unit or vaginal birth in hospital. There was no mention of a planned caesarean.

I then found another leaflet online, ‘I am anxious about giving birth and want to know more about Caesarean section‘, but I felt it was incredibly biased against choosing a caesarean. The information provided conflates data from elective and emergency caesareans, and paints a very negative picture, presumably in the hopes of dissuading women from making this choice.

2018 accessed - CDMR pathway image in OUH Trust caesarean leafletThe leaflet’s pathway for requesting a caesarean is outlined via a flow chart, with all paths but one leading to ‘I am happy to plan a vaginal birth‘; the final path leads to ‘I still want a caesarean section but my obstetrician will not support my plan. They will refer me to another hospital.’

Realising that not one obstetrician at the JR would support caesarean request, and that I would need to travel to a hospital outside the Trust, potentially while in labour, I began to panic.

False Reassurance

I was keen to have the situation clarified as soon as possible, so I emailed my midwife asking how to formally request a caesarean, and start making my way through the published pathway. She was not very clear on the process, and seemed to believe that a maternal request caesarean is an option at the JR.

I was reassured, but not for long.

She contacted the mental health midwife on my behalf, who replied that, “…without proper medical justification, such as a chronic illness or underlying mental health concerns, it is unlikely a caesarean would be undertaken routinely because of surgical risks.”

At that stage, neither of them told me that there is in fact a policy of no maternal request caesareans. I think this is falsely reassuring, and wastes time that pregnant women need to make other arrangements.

Later, my midwife informed me that the mental health midwife said it might be best to ask my GP to refer me to another NHS Trust. I immediately booked an appointment with my GP, and the next available routine appointment was three weeks later. This was a very difficult wait, during which I became increasingly anxious.

My GP was supportive when I outlined the reasons for my request, and agreed to contact an obstetric colleague of hers at the JR to ask about the maternal request process.

I had to chase this up after two weeks, and received a reply from the consultant via my GP another week later; it recommended a referral to the hospital’s consultant midwife, in a clinic specifically for this purpose, but the email ended, “We do not support maternal request CS at the OUH.

I had come full circle; six weeks from my initial request and no further advanced.

On My Own

I began to get very worried that the route to a caesarean – or even a discussion about it – was not joined up, and that nobody seemed to be clear on the process. I met again with my midwife, who listed a number of other trusts I could try to be referred to by my GP.

Again, I was falsely reassured, as it quickly transpired that none of the trusts suggested (Milton Keynes, Luton, Warwickshire) would be able to help. The midwife did not have a list of trusts or consultants to whom I could be referred that are supportive of maternal request, and did not believe such a list existed.

I queried this, as the hospital leaflet had mentioned I could be referred to another trust, but I was told this is only via a consultant, and if I went through the pathway. Since I had declined to meet with the consultant midwife, following her own advice, and because I had no intention of drafting a birth plan for a vaginal birth regardless of what reassurance they thought they could offer, it seemed I was on my own.

Also, although they were supportive of my decision in principle, I did not receive any help from my GP or midwife in finding a consultant willing to perform the caesarean or any practical advice on how to go about this.

It was left to me to personally contact nine different hospitals, which was hugely time consuming. I found that their maternal request caesarean policies were never explicitly stated, and I spent many hours trying to find the right contact, and then phoning or emailing to find out more.

Anxiety

Worse still, because Oxford University Hospitals NHS Trust is such a large trust, the hospitals I contacted were nowhere near my home, and when I eventually found a consultant who was willing to support my choice, he was over an hour drive away.

Vicky Bullett 3This was a lonely and frightening time, and the lack of information available made me feel that nobody else understood how I felt about childbirth. I was told I should just go ahead with a vaginal birth, even though the thought of it and what could happen terrified me. I questioned whether I should even be a mother if I couldn’t bring myself to give birth ‘properly’, and wondered what was wrong with me if every other woman was prepared to suffer through childbirth and its after effects, but I was not.

I could not understand why nobody would acknowledge the risks of a vaginal birth for me and my baby, and was obsessed with the thought that I should have investigated whether I could have a caesarean before I got pregnant. Before my caesarean was agreed, I suffered with anxiety, nightmares about delivering the baby vaginally and sleeplessness, and I strongly believe that this level of stress contributed to the high blood pressure which was recorded at every GP and midwife appointment I had before the issue was resolved (thereafter it was recorded as normal at every appointment until delivery).

I felt I had been wrongly reassured by the NICE guidelines, which I had read extensively prior to planning my family. My husband was entirely supportive of my decision, and he  felt very distressed about the level of anxiety and frustration I was experiencing because he was powerless to help.

Understanding the Reasons for My Request

I think there is a real issue regarding the perception of ‘anxiety’ around childbirth, and how this can be ‘fixed’ through counselling. I am not frightened of the pain or uncertainty per se, and it is not the inherent indignity, vaginal examinations or lack of control that especially worries me.

My reasons for requesting a caesarean are to do with the inherent risks of vaginal birth (namely third and fourth degree tears, subsequent prolapse and incontinence, changes to my sexual function, and risks to my baby resulting from an assisted birth); none of which I believe is adequately addressed in the my local Trust’s caesarean leaflet.

These actual, known risks cannot be reduced with ‘reassurance’, and in fact the consultant who ultimately agreed to my caesarean said my “rational and logical reasons” justified pursuing what is generally an extremely safe surgery. He added that, as a spontaneous vaginal birth cannot be guaranteed, indeed my safest option overall was for a planned caesarean under regional anaesthesia.

Blanket Policy Contradicts Guidance

Given this, I cannot understand how Oxford University Hospitals NHS Trust can defend a policy of denying maternal request caesareans whilst claiming to support women’s choices. I believe that a blanket policy of ‘no maternal request’ not only goes against the 2011 NICE guidelinesbut also indicates that they are not prepared to credit women with the capacity to make an informed decision regarding the birth risks that are acceptable to her.

How can it be that the NICE guidelines support maternal request, the NHS Choices website states that, “If after discussion and support you still feel that a vaginal birth isn’t an acceptable option, you’re entitled to have a planned caesarean”, and I have found an NHS consultant very willing to support my choice, yet my Trust has a unilateral policy of refusing this?

Moreover, since this is the Trust’s policy, it should be clearly stated on its website, so that women can plan ahead of time. Also, the process of being referred to midwives for counselling (if this is what the woman wants), and the overall decision making pathway, needs to be much quicker.

Social Media Help

In the end, as I trawled websites trying to find out if any other mothers had found caesarean support locally, I joined a caesarean facebook group, and was given information about a consultant located one hour and twenty minutes away from me who arranged a private appointment at a cost of £200. He agreed that the risks of a planned caesarean were ultimately lower than a planned vaginal birth (as the latter has the potential to end in an emergency caesarean, which does have higher risks than a vaginal birth), and explained that although there are risks attached to the surgery, these are very low indeed when the procedure is planned in advance and labour has not begun.

He agreed to perform the surgery in the NHS at 39 weeks’ gestation, and I felt as though a physical weight had been lifted. In fact, as soon as we left the building I burst into tears of relief. My midwife and GP hailed my securing a caesarean birth as a success, and I was so happy to have the birth plan I wanted.

Continued Stress

That said, the situation wasn’t ideal. Driving to Gloucestershire Royal Hospital three times for my antenatal appointments and the birth itself, plus arranging local accommodation for my husband and family, was not only expensive, but also a very worrying distance away from home.

This was because my Trust had made it very clear that despite my new consultant’s caesarean recommendation, if I went into labour early and didn’t have time to travel to Gloucester, the JR would not honour my birth plan.
I would have to attempt a vaginal birth against my wishes.

There were other issues too. My consultant sent a letter to my midwife and GP confirming that I would continue my antenatal care at the JR until my 34th week, and then be referred to Gloucester, but this did not go smoothly. I spent weeks chasing it up, and even received an email asking if I’d met with another consultant yet. Panic stricken, and having lost all confidence in the system, I was fortunately able to find out (again, via the facebook group) who I needed to speak to at the hospital, and I made all the necessary referral arrangements myself.

Vicky Bullett 4I was 36 weeks pregnant before I had my planned caesarean confirmed.

Even then, whilst the midwife I met with to arrange my caesarean birth with the wiling consultant was very nice, she still tried hard to dissuade me from going through with the surgery.

This, despite the ridiculous lengths I had already had to go through to get to this point. When I mentioned I was concerned about the risks of incontinence and tearing she blithely reassured me that these things could “almost always” be fixed afterwards.

In fact, one of the reasons I would not consider a vaginal birth is because of the prevailing attitude that everything will be ok, and that any damage can be repaired, when in fact this is not always the case. I did not relish the prospect of vaginal stitches or potentially needing further surgery to repair any damage, especially when I know women are often advised to wait until they have finished having children to have their issues fixed ‘once and for all’; which means they often endure years of incontinence, pain, embarrassment and sexual dysfunction.

Staggeringly, nerve damage has been mentioned to me repeatedly in the context of the caesarean scar but never as a consequence of prolonged vaginal birth pushing. I would far rather have a numb incision site than limited control over my bladder and/or bowels.

The midwife also tried to reassure me that I could “always have an epidural“, but this was based on a number of assumptions: 1) that my reason for wanting the caesarean was just to avoid pain, 2) that an anaesthetist would be available to do the epidural when I requested it, and 3) that l would arrive at the hospital with enough time for one.

I know having spoken to many friends who have given birth that there are no guarantees about epidural anaesthetic being available or suitable for the stage of labour when it’s requested, and don’t even get me started on the times it doesn’t work properly!

CBCAN - Vicky Bullet 1My Caesarean Birth

As planned, I gave birth to a baby girl by elective caesarean in October 2017.

The procedure was calm and painless; the most discomfort I experienced was from the canula being inserted into my hand before surgery. The spinal block was a strange sensation but the anaesthetist took care to put me at ease and at no point was it painful. The whole operation was over within an hour and I had my baby in my arms five minutes after they put a knife to my skin.

I was able to breastfeed her in the recovery room, and I had the feeling back in my legs after a few hours. I was discharged a little over 24 hours later as my wound was healing well, and I took painkillers on a schedule for the first week, which limited my discomfort to very manageable levels. I was completely drug free within ten days.

CBCAN - Vicky Bullet 2Contrary to what many people tried to tell me, I had no trouble lifting or caring for my baby from the beginning, though I did have to take care not to lift anything too heavy for around six weeks. I also waited six weeks to drive, since I didn’t need to any sooner, but I felt entirely recovered within two or three weeks, and by 10 weeks postpartum, I only had a flat, red, painless (but not numb) scar to remind me that I had a caesarean at all.

Information and Transparency

I know there are many other women facing the same difficulties I did, and with the lack of support and information about how to secure a caesarean birth in many NHS hospitals, they must endure stressful pregnancies and a vaginal birth plan they don’t want.

This is shocking given the information women receive from NICE and NHS Choices, and while a revision of Oxford University Hospitals NHS Trust policy on maternal request would be very welcome, in the absence of this, all trusts that disagree with NICE guidance should communicate their position clearly and openly, and provide timely advice to women about where else they can go instead.

*     *     *     *     *

choosing cesarean birth choiceCaesarean Birth contacted the media office at Oxford University Hospitals NHS Trust, which provided this statement:

Rosalie Wright, Director of Midwifery at Oxford University Hospitals NHS Foundation Trust, said: “Our policy on providing caesarean sections that are not medically necessary is in line with NICE guidelines. A caesarean section which is not clinically indicated may have serious consequences for a woman and her baby.
Some women have real anxieties about labour or have had a previous poor birth experience. We have a Perinatal Mental Health Team who see and assess women in this situation. In these circumstances, a planned caesarean section may well be the best outcome. All requests are considered on an individual basis and a plan for the woman’s care put in place. Our practice in this area supports the NICE guidance relating to requests for elective caesarean sections.
Our obstetricians support performing caesarean sections for clinical indications which include mental health issues. However, NICE guidance recognises that obstetricians are not required to perform a caesarean section when there is no clinical indication to do so and cannot be made to do so.
If no clinical indication is found, then a woman would be referred to an obstetrician at a neighbouring Trust who might support her request. This is in line with NICE guidance.
We regularly review all our policies, including this one, and are in the process of reviewing it at the moment.
Our maternity services are highly regarded and we have excellent outcomes for women and babies and score highly in patient experience surveys.

choosing cesarean birth choiceCaesarean Birth also contacted the media office at Gloucestershire Hospitals NHS Foundation Trust, which provided this statement:

A spokesperson for Gloucestershire Hospitals NHS Foundation Trust said:
“We support more than 6,500 women in the county each year through  pregnancy, birth and during the period after birth. We always aim to give every women personalised care that is appropriate for their individual circumstances  and ensures they have the opportunity to decide what is best for them. Most women prefer to give birth naturally as for the majority of women a normal vaginal birth is  the lowest risk option for both mother and baby. It also has the added  benefit of enabling the mother to recover quickly following birth.
“However, when a woman feels that they are unable to give birth naturally, we encourage them to talk to healthcare staff about their options, and if it is appropriate, we will follow the NICE guidelines about planned caesarean birth. We aim to listen to women and to provide a supportive and safe environment for every new family.”

choosing cesarean birth choiceCaesarean Birth agrees with Vicky that until policies on maternal request are standardised in all NHS hospitals, women should have access to information that makes it clear which hospitals, and which obstetricians, are willing to support this legitimate birth choice.

Anything less is disingenuous, wastes NHS time and resources, and creates unnecessary stress and anxiety for women.

  • Produced and edited by author and journalist Pauline Hull

3 comments

  1. So happy you were ultimately successful, but also so frustrated and heart broken that the process is so broken and that so many women face these kinds of cruel barriers to exercising their right to make a medical decision for themselves. Hoping motherhood is going well for you, and thanking you for sharing your story!

    Like

  2. I’m so glad you got your properly informed and well researched choice of birth for you and your baby.
    I too experienced struggles to get a caesarean. Luckily for me the Consultant who did finally support it was at the same hospital.
    The anxiety whilst waiting for a decision (finally given at 32 weeks) was awful. I too couldn’t understand how a NICE policy was very clearly unsupported in practice. Yet alternative birth methods (eg home births and hypnobirthing) were positively promoted. Hugely frustrating!

    Like

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