Making Decisions - Editorial

AIMS Journal, 2017, Vol 29 No 3

A huge welcome to readers old and new! The AIMS Journal, the backbone of our work for nearly 60 years, is now entirely available online, to all. The decision to make the Journal 'open access' and remove all pay walls was made for two main reasons:

Firstly, we wanted to ensure that everyone was able to access these important articles, looking at issues in maternity services, and that the insights and wise words of those writing for the Journal could be shared widely, to help influence improved maternity care for all. We wanted everyone to have access irrespective of their ability to pay. We hope that more people will want to write for the AIMS Journal and website, knowing that their efforts will now be seen by a much wider audience. We know that some readers will miss the printed Journal, but the new website does have PDF versions of articles and information for download and print, for those who prefer to read that way.

Secondly, many of our members were shocked to hear that the costs of printing and posting the Journal used all of their membership subscription. This meant that money for campaigning, the website, and other activities had to be found from other sources. Publishing the Journal directly to the website will mean that membership fees will now also be able to help support other essential work in providing information, running the helpline, and campaigning for improvements to the maternity services. AIMS is, and has always been, its members. The charity is completely volunteer-run and we hope that the changes we are making to how we work will enable more members to be actively involved with our activities. We will have groups working on the Journal, Website, Helpline, Campaigning, as well as other essential groups managing finances, and membership, in order to keep things running smoothly. So, if you would like to join any part of the team we would love to hear from you, and if you're not already a member, then please consider joining and supporting the work of the charity. Here's how to join (click here!).

This edition of the journal considers some of the decisions that we make, and their consequences. Those pregnant for the first time have to start learning to navigate the system fast, and when there’s often a wait of a few weeks from that first pink line to even meeting the midwife, it can feel overwhelming. All maternity care is offered and we can choose to engage with all, some or none of it – so, if we decide to meet the midwife at this point, during that first booking-in appointment we are asked pages of questions, weighed, measured and told to pee in a bottle. I can be absolutely sure that for almost all such appointments, not once will we be asked whether or not we wish to be poked, prodded or dipped and what the pros and cons of any tests and measurements are from our point of view.

Our pregnancy tends to continue in the same vein with phrases like “I’ll book you in for your scan” and “just hop up on the bed and I’ll feel your tummy”, “so I’ll do a sweep now and then we’ll book your induction”. The language used sets us up for compliance. There is no expectation of us questioning why, or whether or not we wish to do this, and often it’s only when a test throws up an issue that we might start to wonder whether we really wanted it all in the first place. Do I want to know if the baby has Down’s Syndrome? Do we really have to be tested for gestational diabetes? Is it really necessary to be induced? Can we just slow down a minute and remember whose body it is anyway?

The first, and most important point to remember, is that the only person who can make decisions about pregnancy and birth is the owner of the body. We cannot be “allowed” or “not allowed”; we are adults with legal rights to make our own decisions. No one else can make them for us. While many health care providers may forget to phrase their suggestions in this way, the first way to reclaim control is to rephrase what appear to be instructions as suggestions, or offerings. For example, if your midwife says “I’m just going to take your bloods now”, you can choose to hear, “I’m offering to take blood for a test. Would you like me to? Do you understand why I’m offering this and what benefits or risks it might have?” You can then choose to give or decline your permission or if you prefer, ask for more information. For instance, “I’m not sure what the blood tests are for. Before I make a decision about whether to have them, could you talk me through what they’re for, please?” It is important to note that you have the right to take as much time as you need to make a decision, and you can always change your mind at any time.

Making decisions in labour can be really challenging, not least because physiological changes in our bodies mean that to labour well, parts of our neocortex, the “thinking” area of our brain, needs to shut down. That’s why questions and conversations can be so intrusive – it’s our body telling us that we need to stop trying to talk or think, and just be. Ideally, before labour, we will all have the opportunity to plan for a variety of scenarios and consider what options we may or may not be happy with. We may rely on our birth partner to be our advocate at this time.

One such decision is the type of monitoring that we might be comfortable accepting. In this journal Gemma McKenzie has reviewed a trial which looked at whether a computer system to look at readouts of continuous fetal monitoring (CTG/CFM) traces (the INFANT trial) gave better results than humans interpreting the data. What this trial doesn’t look at is whether continuous monitoring itself is actually beneficial. Touted as an important way to check on the baby’s well-being, and effectively forced upon people whose labours do not follow statistical perfection, in fact the evidence for it being of value to most women and their babies is either scanty or non-existent, and, chances are, it is causing more harm than good. Our information page on monitoring gives more information on this topic and is well worth a read before giving birth, and always remember that the only person who can decide whether or not you want to be monitored, and how, is you.

Decisions still come thick and fast after our babies are born. Do we want to have the heel prick test? There are many more conditions that our babies can have which are not tested for, because there isn’t a cheap and easy test for them. The heel prick test does look at some very serious conditions, which if picked up early usually lead to much better outcomes, but it is an invasive and painful test. Do we want our babies to have vitamin K, and if so, by injection or orally? Do we agree to all of the vaccinations offered, or do we choose some, or none at all? Where do we get the information to make these decisions? NHS information is not always unbiased, as can be seen on the invitation to vaccinate letters with the owl image and “Be wise… Immunise”. In this journal, twenty years after having her first baby, Alex Smith is still unsure about whether she made the right decision about vaccination. What she does know is that the decision was hers and she had the time to make the decision, and to change her mind at any time.

Ann Roberts has written to us to tell us her experience of giving birth in the 1970s and 80s, and how it led to her becoming a birth campaigner. She was told, "although we think it right to explain to women why we do the things we do, you should not expect to make management decisions about your pregnancy in an independent way". Bio-ethics states otherwise, and now in 2018 even our NICE guidelines state, “People have the right to be involved in discussions and make informed decisions about their care” and the NHS has an entire page on consent, https://www.nhs.uk/conditions/consent-to-treatment/.

Times have changed, and the law is clear. Our decisions are our own and ours alone, and no matter how we are spoken to, when any health care is offered, it is up to us whether or not we accept it. This is the first principle of making our decisions – knowing that we can make them ourselves, and understanding that we can hear what we’re told to do as being an offer, because, in law it can be nothing else. (http://www.birthrights.org.uk/resources/factsheets/consenting-to-treatment-2/)