Saturday, November 17, 2012

Tokophobia support - am I right to be concerned?

"More needs to be done to help women who have a morbid dread of childbirth...", says expert.

I am trying very, very hard not to be cynical about this call for midwives to recognize tokophobia as a legitimate issue affecting as many as 10% of women. Firstly, why has it taken so long and why have so many educated health professionals never even heard of it? But secondly - and more importantly, - why the concern NOW?
Could it be that this call is a direct response to the November 2011 NICE Caesarean section guideline update, which recommended that all women who request a caesarean should ultimately be offered one (once informed of the risks and benefits), and which specifically cited tokophobia as a reason some women might prefer surgery? And note, NICE says that tokophobic women should be 'offered' counseling, but not that it should be a requirement prior to offering a c-section.

Here are some of the reasons for my concern:
1) Expert Zara Chamberlain is quoted as saying, "This could result in the women deciding to have an abortion or to seek an elective C section", as though these two options are an equally terrible consequence. I know of three cases where abortion was sought by tokophobic women, and in all three, had their cesarean maternal request been granted, they would have happily taken that option – and a live baby - but surgery was refused.

2) Zara talks about "a robust birth plan" for tokophobic women, as though they can somehow be guaranteed a more predictable trial of labor than anyone else – but they can't, and this is one of their legitimate fears. Women and babies CAN die or suffer injuries during the birth process, and this is why tokophobia is not wholly irrational.
3) Zara concludes, "Other women have an elective Caesarian section - which is also a very scary option". This demonstrates to me that even this midwife counselor, who is trying to educate midwives, may not have fully understood that for many tokophobic women, the very opposite is true. They do not perceive planned surgery as particularly "scary" at all, and in fact, once surgery is scheduled, their anxiety is vastly reduced (even though fears such as premature labor or their doctor being unavailable on the day may remain).

4) The "offer" of counseling to vulnerable and scared women can too often mean a thinly veiled attempt to pressure or convince them into having a trial of labor; labor risks are completely downplayed and cesarean risks are overemphasized. And this is more to do with an ideological desire to reduce cesarean rates and increase 'normal' births than anything else.
Norway study

For evidence, just look at this article today on a recent Norwegian study, which begins, "Group therapy can help women avoid risky and costly cesarean sections":

Lead study author Dr. Hanna Rouhe, from the Helsinki University Centralö Hospital, is quoted as saying (about tokophobia), "Symptoms of the intense fear included panic that affected daily life, nightmares about delivery and a strong desire for a C-section."
"A number of initiatives aim to reduce the first cesarean section by waiting longer to induce labor and by allowing longer delivery times before C-sections are offered, she noted. But… I am not aware of initiatives surrounding childbirth fear - maybe there should be."

With all this in mind, I'm left wondering whether some midwives are developing a new concern for tokophobic women with purely altruistic intentions, or actually because these women - with their "strong desire" for a cesarean now supported by national clinical guidance - are a danger to the RCM (and others)’s ideological goal of reducing cesarean rates.
After all, 6-10% tokophobia is a very big number when you're trying to hit low CS targets...


Mrs. W. said...

And why is facilitating the desires of tokophobic women to become mothers via surgery such an awful thing? What is cheaper - therapy or surgery? Why is playing on the fear of surgery okay (many women go to great lengths to avoid cesareans) , even when cesarean might be a better choice - are those women also offered 'counselling'...

Claire (Hmmthinking) said...

Part 1) This is me. I am 99.9% sure I am suffering from primary tokophobia. I have not been diagnosed, but I am currently 'in the system' over anxiety awaiting a referral.

I could write essays on the subject and the extent to which it is affecting my life and how much more could be done to help.

My feelings have been with me since I was in my early teens, and I find a lot of the assumptions that are banded about by health professionals in this country not only insulting but actually failing to have any clue whatsoever about what they are dealing with. 'Too posh too push' is really driving attitudes rather than looking at what little research DOES exist. The first assumptions are usually about pain or being influenced by the media. This couldn't be further from the truth, and this does seem to be backed up by studies from Scandinavian where they have found that women tokophobia tend to have certain common characteristics and background.

I already have very big issues about my sense of worth and shame as a woman because of this fear and knowing that a lot of these attitudes and ignorance is not only in the press and public but also institutionalised within the health profession just adds to the anxiety and fear. The fear of judgment and facing obstacles and not being taken seriously, for me, is almost as bad the actual fear of birth itself.

The NICE document stated that they thought counselling might help, but they had no idea which did and they also aware that some treatments may actually make things worse so research was needed. Indeed a study in Sweden from last year makes for very interesting reading.

Sydsjö G, Sydsjö A, Gunnervik C, et al. Obstetric outcome for women who received individualized treatment for fear of childbirth during pregnancy. Acta Obstetricia et Gynecologica Scandinvavica (AOGS). Published online 22 September 2011.

It concluded that EVEN AFTER counselling women with an extreme level of fear, were more likely to end up with an instrumental delivery, EMCS and ELCS. By that token, women who display and express an extreme fear shouldn't be treated as low risk but high risk from the word go and given a hell of a lot more support rather than being dismissed in they why that that currently are frequently done. It is actually quite a logical conclusion that fits in with the beliefs of even the most 'pro-natural' home birth advocates given what they say about the need to feel safe and secure for the production of oxytocin. Its a study that seems to find in with the conclusions of a number of studies and there does seem to be a clear direction of where treatment and research should be going in this country. But we are stuck with people who refuse to see this as anything more than an costly and unnecessary lifestyle choice despite all evidence to the contrary.

When you start reading the research available, and also seeing the gaps in our knowledge that have been pointed out by various bodies, the situation in the UK is appalling and highly politicised against women with tokophobia. The NHS DOES NOT want to properly acknowledge or deal with problem for various reasons; not least cost.

Claire said...

Part 2)

The way things stand at the moment, I can not even face getting pregnant without the prospect of definitely being able to access an ELCS. The current political climate and system is stacked against me, and I have no idea if I can get that BEFORE getting pregnant anyway, and be secure in the knowledge that I am not going to have that decision questioned at every opportunity and have people try and reverse that and deny it against my wishes. Its not just about women who are already pregnant.

We need transparency over the number of women having ELCS, complete with the reasons behind all ELCS, acceptance that this is a mental health issue not a flight of fancy and a 'trendy' thing to do and clear transparent hospital policies on ELCS freely available that everyone can access.

Its a taboo that need to be shattered, and the myths blown out the water. There is no group or organisation truly supporting women with primary tokophobia (with the exception of this blog) and there is very limited support for those with secondary tokophobia. It needs to change.

Like I say, I could rant all day about the subject. I just wish people would actually have the mindset to be willing to listen with an open mind rather than the excuses and existing prejudices.

Mrs. W. said...

Claire - I write the blog and would love to turn your comment here into a guest post on my blog. I would also welcome you to join the "Cesarean by Coice" group on Facebook.

Best of luck in your journey to motherhood - regardless of the path you ultimately choose to get there.

sarah said...

What about women with other phobias? I have blood-injection-injury phobia: The first time I had a blood test (at the age of 29, after months of therapy and after having taken enough valium to make me unsteady on my feet, they had to stop in the middle as I was shaking (and crying) so much that not enough blood was coming out. I don't know if I would be classed as having tokophobia - all methods of childbirth sound awful to me, but a c-section slightly less so as the environment is calmer and less stressful, the process is more predictable and the type of pain is definitely preferable.

And people like Mrs. W who don't have any psychological issues, but believe that a C-section is a better choice?

Recognition of tokophobia is a step forward but ultimately C-sections should be granted on the grounds that every woman has autonomy over her body.

Claire said...

Hey Mrs W.

Thanks for the info. I will put your blog on my list. By all means use my comment on your blog. The more the message gets out there the better.

I'm not sure I'm ready for facebook though. I've been trying to find things out and have been using Mumsnet a fair bit because of the anonymity (though even then I've struggled at times, and I'm not currently using MN).

Because of the nature of facebook, I find it difficult since I've only been able to discuss with a few friends and joining a group would inevitably raise questions from noisy friends. I've hidden behind saying "I don't want children" for a long time rather than answer difficult questions.

I will bare it in mind for future though, if I feel able to join.

thank you.