Miscarriage care is broken…

…can the Pregnancy Loss Review fix it?

There’s no easy way to say this. At least, no new way. I had another miscarriage.

‘I feel like we should get a medal or a sticker, or something, for number five,’ Dan said, as we left the hospital, after several hours at the emergency gynaecology unit.

I haven’t written to you for a couple of weeks and, well, this is why.

Before the miscarriage, I’d been planning to do a sort of special edition of the news round-up, analysing the government-commissioned Pregnancy Loss Review, which was published last month here in the UK.

And then, afterwards, any thoughts I had on it became swirled together with our particular experience of miscarriage care this time around.

So I can’t remotely promise objective analysis here.

The Pregnancy Loss Review – with its 73 recommendations to improve miscarriage care, including 20 that have been accepted for fast track, according to one of the authors – is undoubtedly a triumph and I can only imagine the work it has taken to get it across the finish line. Countries the world over should use it as a blueprint for pregnancy loss care, in my opinion.

But there’s also no doubt in my mind that there’s more of a mountain to climb than ever to deliver the high-quality care the review aspires to. Because our care this time around was markedly worse than the care we received six years ago.

Conversations about miscarriage might be more open and more nuanced than when I had my first miscarriage, but, six years on, the healthcare systems to support people going through pregnancy loss have crumbled from bad to worse.

You are told in all the NHS’s own pregnancy advice that any bleeding must always be checked out.  When mine started this time, I was told – extremely kindly by the nurse on the other end of the gynaecology triage phone line – that I would have to wait a week to see what happened and to call back if things got significantly worse.

As soon as I hung up, I wished I’d lied about how bad it was. Naively, I’d assumed given our history we’d be fitted in for a reassurance scan, as generally we were before, with or without bleeding. Six years ago, my GP was able to book me a scan for the following morning.

This time, even when, four days later, the bleeding progressed, accompanied by crescendoing, contraction-like pains, all the emergency gynaecology ward could do was take a blood test and check whether my cervix remained closed or was open. There were no scan appointments to be had.

I was, at this point, already fairly certain I’d miscarried. The cramps that had come on in the middle of the night before had basically dissipated. I was still bleeding, but not as much. More than that, I just felt like it was over: the storm inside my body had blown itself out. I could tell the hormonal tide was receding once more. I could feel it everywhere: breasts, stomach, lungs, brain. All that ripeness ebbing away.

Still, there would be no knowing for certain without a scan. And the next one available, the nurse told me with palpable regret, wasn’t for another three days.

‘I’ll call you if we get any cancellations,’ she promised.

Now, I’m not stupid. I’ve seen the headlines. I’ve waited in a packed-out A&E with Edward, once or twice. I know what’s happened to the NHS in the last decade – snowballing since the pandemic. I know that a reported one in eight people are on a waiting list for hospital treatment. I know that at the latest estimate we’re short of at least 2,500 full-time midwives to meet demand.

But it was still a shock, observing the disintegration firsthand, not least when it was set against a backdrop of glowing headlines in the government’s favour, because of promised improvements to miscarriage care.

After the long-awaited scan – a week after I’d begun to bleed – we were shuffled to the Bad News Room, with its lilac vinyl chairs and butterfly motifs on the wall. We were left alone while someone could be found to talk to us about what had happened. I wondered, briefly, if they were judging us because we had not cried. Not this time. Not yet. (‘Sandra, can you get someone to go and speak to the two psychopaths in Room 118?’)

‘I went on their podcast to talk about the book,’ I said to Dan, indicating towards some leaflets for a charity, next to the tissues on the little table in front of us, with morbid amusement.   

Dan observed how much worse this would all have been if we hadn’t been through it before. If we didn’t know what we know. The waiting. The false hope. The lack of clarity.

We waited in that little room long enough for it to become obvious they had forgotten about us, lost in the shuffle, and eventually Dan went to find someone who could discharge me.    

From start to finish, everyone was so, so kind. Everyone was always so sorry about the wait.

‘I’m sorry you’ve been here so long’.

‘I’m sorry, it’ll be a bit longer, we just had an emergency come in’.

‘I’m sorry, it could be a while, we’re waiting for a sonographer to come across from another hospital – if you want to go down to the canteen for a bit, I’ll call you when they’re here?’

There is so much good stuff in the Pregnancy Loss Review, which has been painstakingly put together by campaigner Zoe Clark-Coates and Sam Collinge, a bereavement midwife, with care, precision, and expertise. Both have intimate experience of pregnancy loss – and it shows. For instance, there are recommendations for separate facilities so that you do not have to walk through a waiting room heaving with pregnant bellies after being told your own pregnancy is over. And there are suggestions on methods to make it easier for medical staff to identify, at a glance, people who are pregnant after loss so they don’t have to keep repeating their story ad nauseum in antenatal appointments. There are also recommendations for improved access to early pregnancy units and/or gynaecological assessment units, which should be available all day, ‘seven days a week’ and staffed by ‘by specialist gynaecology staff with the ability to scan when necessary’ according to the review.

You probably also saw the headlines that people who miscarry will no longer have to wait until their third loss before accessing support or medical tests.

Of course, how long it will take for any of this to filter through is, as yet, unclear. In fact, as far as I can tell, no commitments at all have been made about tangible investment or when exactly we should expect to see the promised changes become reality.  

Given our recent experience, it, mostly, feels like an increasingly distant dream.

(The only exception is for recognition of loss certificates - which I wrote a newsletter about last year here - which will be available from October and can be applied for retro-actively for anyone who lost a baby before 24 weeks.)

A notable feature of the Pregnancy Loss Review is that the words ‘funding must be allocated for this’ appear again and again. The report authors acknowledge that their recommendations are deliberately ambitious, rather than limited to what could be easily and quickly implemented. However, they also say they have had assurances that the required investment will be made.

But, call me a cynical journalist, I can’t help being suspicious. The Government has got some great headlines out of this review, while actually publicly committing itself to very little. While, gallingly, things have noticeably deteriorated on its watch.

I really wish I felt more optimistic about miscarriage care in this country. I really do. I really wish I could trust the current Government to do this brilliant review justice.

I wish I hadn’t seen for myself just how far there is to go, with this most recent confirmed miscarriage.

Actually, I say confirmed, but technically what I was diagnosed with was a ‘pregnancy of unknown location’, because the scan depicted no sign of a pregnancy, but there was still evidence of the pregnancy hormone HCG in my blood – albeit at a level far, far below what it should have been for 10 weeks along.

This is what I predicted to Dan would happen, as we walked across the hospital carpark to get to the appointment. In the scanning room, the sonographer’s explanation was as if I’d scripted it myself. There are advantages to having – literally – written the book on miscarriage.

But imagine if you’d never even heard the phrase ‘pregnancy of unknown location’ before?

I suspect had I been scanned when I first raised concerns, a week before, the diagnosis would have been more clear-cut: a visible pregnancy, but not an ongoing one. There might have been the possibility of surgery to avoid waiting for the inevitable bloodshed. There might also have been the possibility of tests on the tissue to see if it was a genetically healthy embryo or not. Another potential clue in the as-yet unsolved mystery of why this happens to us.  

In medicine, the term ‘iatrogenic’ means disease or symptoms that are introduced by medical treatment. Is there a parallel term for a diagnosis or illness attributable to medical treatment that’s not readily available due to lack of resources, I wonder?

Anyway, this now all belongs to the realm of speculation; What-If Land – a place I’m trying not to spend too much time.  

In reality, another blood test had to be taken. If the level of HCG had fallen since the last one, it would be presumed that this was indeed a miscarriage, and if the HCG level rose or stayed the same, then perhaps something else was going on. Perhaps a much more recent conception than we’d thought (a physical impossibility in our case) or perhaps an ectopic pregnancy.

No one phoned me back with the results.