Recently something rather awful, but also completely routine happened to me—I had a miscarriage. To be precise, I had two miscarriages within seven days: one spontaneous miscarriage and one medical management of the ectopic twin. At a chance of 1 in 4 pregnancies ending in miscarriage, it is an incredibly common thing, and yet the aftercare I received made it feel like I was the only person on earth ever to walk through the doors of a hospital losing a baby.

In the aftermath of an emotional and physical trauma patients need information from a trusted source—the doctors, midwives, and nurses. The patients need structure, specifically guidance on what questions to ask. Because, as a patient encountering a new medical experience, you do not know what you do not know. How can you ask the “right” questions, or any at all, when you don’t know how or where to direct your energies?

I say this because, in my experience, aftercare of miscarriage is lacking in information or support. After the initial miscarriage—called a “failing pregnancy” —I was given no information about how to care for myself, what I should not do, if I should see my GP, or how to manage my emotional and physical wellbeing. When I pressed for more information, the kind medical care assistant wasn’t sure, and had to ask a colleague who wasn’t sure either. My sick note unhelpfully stated only two words “gynaecological troubles”, signed by a doctor I had never seen, offering me no information on what was happening.

In fact, I would not see a doctor at all until consent was needed. With the diagnosis of the surviving ectopic twin came doctors and information—specifically about methotrexate. Everybody wanted to be sure I fully understood the risks and side effects of the drug—but still no one explained what to do after. I would ask again and again for help and guidance: could I exercise, take vitamins, enjoy a bath, have sex, drink alcohol or take pain relief? At every step of the way, if I wanted information I would have to battle to get it. Cajole and remind, so I could better understand how I was supposed to live my life now.

There are some ways that clinicians can help patients navigate this difficult time, and I am sure many do this as routine. Perhaps I was unlucky. Perhaps, as we all know, the NHS is stretched so unfairly thin that these things are becoming more difficult to achieve. However, there are some simple things that could help.

First, name the beast: “failing pregnancy,” “threatened abortion”—these words are not only confusing, but they imply that perhaps against all the odds you might not be losing your baby, when in fact you are. Use concrete words and if you do not know what is happening, be honest about it. To this day, the only medical professional to say the word “miscarriage” to me has been my GP. She asked if I had in fact had a miscarriage, as the only information the hospital had sent her was that I had presented to hospital with light bleeding in early pregnancy.

With that in mind, give patients an information booklet to read and somewhere to call. Provide information like physical symptoms to watch for, how long they will go on for, what is normal and what is not. In addition, practical information such as, do they need to follow-up with their GP, and who cancels midwife appointments, and pre-booked scans? Because the answer is the patient does, and if you do not know this, then calling person after person to cancel appointments and explain that the baby you wanted is gone, is extremely painful. Nevertheless, forewarned is at least forearmed.

In the vacuum created by the lack of aftercare and information, grief, doubt, and the dark recesses of Google step in to fill the void. It does not have to be this way. Something as simple as a list of symptoms to watch for and the reassurance about when to see your GP would be enough to give back some sense of control.  

Alexis Paton is a lecturer at the University of Leicester, teaching and researching in the field of social science applied to health and ethics. She is a Trustee of the Institute of Medical Ethics and the Chair of the Royal College of Physicians Committee on Ethical Issues in Medicine.

Competing interests: None declared

Twitter: @dralexispaton