Do you know anyone who has had a miscarriage? The odds are high, maybe it’s a work colleague, or the woman you see on the bus, or perhaps a good friend. Miscarriage is surprisingly common, with around a quarter of a million women suffering one every year in Britain. And yet it is a subject that is rarely spoken of, leaving its victims suffering in silence. We are so diffident about reproduction – but especially when it goes wrong. The problem of understanding is a communal one that affects women in all areas of their lives.
A recent survey by Mumsnet has found evidence of inconsistencies in care, thoughtless treatment by health care providers and a general lack of understanding about the scale and the impact of this issue.
From Mumsnet’s findings it would seem that there is a tendency to oversimplify the effects of miscarriage; certainly many women found that when a problem was first discovered there was a lack of urgency in the provision of treatment, with half of women questioned waiting over 24 hours for a scan to determine whether their baby was still alive. One in five women had to wait more than three days. This failure to address miscarriage as an emotional event as well as a physical one was sometimes compounded by the fact that women were treated alongside others with continuing healthy pregnancies. One Mumsnet user stated that ‘I sat with other ladies who were still pregnant and waiting for scans...seeing their happy faces tore me apart’.
Many of the women questioned also felt that there were shortcomings in their treatment at the time of the miscarriage, whether this took place at home or in a hospital setting. One woman says of her hospital experience: ‘I wanted to say something about my baby, but my voice had gone. My husband had to leave me, he wasn’t allowed to stay... I was left in a freezing room, in a gown, ready for theatre, without a blanket’. Only 15 per cent of women who miscarried at home felt that they had been given the right balance of support, information and pain relief.
Charlotte, who lives in London with her husband and young daughter, believes that these shortcomings are indicative of a bigger, all-encompassing problem related to our attitudes towards miscarriage. She has suffered several miscarriages and received treatment in a number of settings. Charlotte found that most hospital staff who treated her were approachable and understanding when working in a specialist unit. However, her dealings with general practitioners or Accident and Emergency staff were not satisfactory. She found that GPs were ‘relatively ignorant about the issues of miscarriage and the possible reasons for it’ and A&E doctors ‘were very dismissive’ and gave her the impression that she was wasting their time. She believes that the fundamental problem is that nothing can prepare a woman for the loss of their baby. ‘I don’t think anything can prepare you for being sent home after a scan knowing that the baby you were carrying has died. You sit at home wondering if you will manage to carry the baby until you start your treatment or have the procedure, or if you will miscarry at home. The information I was given was comprehensive but I don’t think any amount of literature can prepare you for the pain of miscarrying at home. It is horrendous, isolating and scary’.
It seems that despite advances in our comprehension of miscarriage as a medical event, we are still sadly lagging behind in our understanding of its emotional impacts. Many women do want counselling but of the women questioned by Mumsnet, only a meagre 12 per cent were offered it. Charlotte found that at the time of her miscarriages she just wanted the pregnancy dealt with; she believes that counselling should be offered afterwards and found that there was very little after care, either from her GP or the hospital.
Men can also be overlooked and should be offered counselling too. As Pete Wilgoren, TV journalist and author of Dadmissions, says in his book ‘The effect has been twofold... the helplessness of not being able to help my wife when it happened and years later it is the ‘’what could have beens’’ which still creep into my mind now and then’.
Wilgoren's feelings are echoed by the findings of The Miscarriage Association and University College London. The study showed that when miscarriage happens, men feel that they cannot talk about their feelings. Some keep them hidden to protect their partner - 46 per cent of men questioned didn't talk about their own feelings due to fears of intensifying their partner's sadness. One man states, 'there should be more support for men. We are put on the back bench'. Ruth Bender Atik of the Miscarriage Association says that this research shows that men often feel invisible during and after miscarriage or ectopic pregnancy. She says that 'All too often the voices of partners go unheard and their needs go unmet'. Men both want and need support too at this time; one in five feel excluded by healthcare staff and many felt that they were not given information about support groups where they could share their emotions.
Although miscarriage is an intensely personal thing it also impacts on elements of public life. Many feel unable to tell their employer what is happening to them and find it necessary to cover up the real reason for their absence from work. Charlotte found that her employer was less than understanding; ‘I ended up having to tell them about one instance because I was in A&E and they wanted to know why I wasn’t coming in, I panicked and told them, but they were insensitive and more interested in when I was coming back to work. I haven’t told them about my other miscarriages since and have managed to keep it from them with limited days off sick.’ Charlotte also discovered that her boss was considering taking her time off for hospital appointments into account when performing a pay review. Any work time that has been lost through appointments has had to be made up at a later date. She said that since giving birth to her daughter she is expected to work additional hours to ‘prove her commitment’ to her job. It would seem that sometimes in a male dominated work environment miscarriage is treated as an inconvenience, and nothing more.
A miscarriage may happen in a few hours, but the ramifications last for a long time afterwards. Talking helps but some people find this difficult. The oft quoted comments such as ‘It’s nature’s way’ or ‘You can always have another one’ are insensitive and thoughtless. Why do we find it so difficult to talk about pregnancy loss? It’s not necessarily a lack of empathy, but something more entrenched. As Charlotte says, ‘Most friends are supportive, some reacted a bit oddly, but I think that is because no one knows what to say when you say “oh yes, the baby died”. “No one wants to talk about dead babies, do they? And because no one talks about it, it remains this odd thing that no one talks about: which is even more isolating”.
So what can be done? Using their findings, Mumsnet has devised a Miscarriage Care Campaign which calls for: supportive staff, access to scanning, safe and appropriate places for treatment, good information, better treatment and joined-up care. Simple measures such as an awareness of appointment slots or a designated private waiting room are just two ways of extending the hand of compassion at this time. Other improvements such as access to 24 hour scanning facilities and investing in research about miscarriage would be an enormous help too. As Charlotte says, ‘Why do women have to go through three miscarriages before the NHS will start testing? Has anyone added up the financial cost of all these women miscarrying? The theatre costs, hospital scans, lost days at work, not to mention the emotional cost, and worked out if it would be just cheaper to stop it happening in the first place?’
With minimal changes the NHS could make a huge difference to care. We also need to look at our own attitudes and accept that when a miscarriage takes place a woman and her partner not only lose their baby, but all the hopes and dreams they had for him or her. Miscarriage may be regarded as ‘one of those things’, something that is kept hidden and secret, but for many, it has long-lasting effects, and everyone affected by it deserves to be treated with dignity and respect.
To support the campaign, please visit www.mumsnet.com/campaigns/miscarriage-care-campaign-how-to-get-involved
For further advice contact sayinggoodbye.org