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Babyloss Awareness Week is held annually from October 9 to 15. Involving twenty-one pregnancy and baby loss charities in the UK, it’s a special opportunity to mark the brief lives of babies lost in pregnancy or soon after birth. The Miscarriage Association’s National Director, Ruth Bender Atik, takes a look at how we can improve experiences of care when loss occurs.
For many if not most women and their partners, a positive pregnancy test means a ‘baby’ – not ‘fetus’ or ‘embryo’, so if they experience a miscarriage, however early in the pregnancy, that is what they are losing, along with their hopes, plans and dreams for their future child.
Of course that’s not true for everyone – not every pregnancy is greeted with joy and for some miscarriage may come with a sense of relief – but for many, feelings of shock, loss and grief can hit them hard.
At the Miscarriage Association, we hear from thousands of women – and some men – who have been though pregnancy loss. Some are going through it when they get in touch – from home, from A&E, from the Early Pregnancy Unit waiting room. Some are in that period of limbo, between an inconclusive scan and the one that will tell them if their pregnancy is continuing or not. And some may get in touch weeks or months after a loss.
They talk to us about their feelings and their fears. They ask questions – often about the terminology they have heard or the procedures they may face.
They also talk about the care they received from the variety of health professionals they have met along the way. And it is very clear that the kind of care that they receive can make a significant difference to how they cope with their experience of pregnancy loss.
Everyone wants good medical care, of course, based on up-to-date knowledge and excellent clinical skills. Miscarriage patients may want the impossible too, sometimes: for this loss to be stopped in its tracks or, if not, for clear answers as to why it happened, and for something to prevent it happening again.
Along with that, women and their partners tell us how much the human aspects of care matter. Kindness, understanding, clear information and sensitive language are just some of the ways that health professionals can help them cope with their experience.
Of course most health professionals work hard to provide good and sensitive care. What’s more, many of them will have been through pregnancy loss themselves and know how important this is.
Even so, it can be difficult.
While the NICE guidance on the diagnosis and management of early pregnancy loss stresses the need for training in providing supportive and sensitive care, that’s easier said than done. Limited training budgets, staff time and cover mean that it is increasingly difficult for staff to access training, whether on or off site.
The Miscarriage Association’s new online learning resources aim to fill some of those gaps.
Produced with the support of NHS England, they comprise six short films, each with a brief good practice guide and all are available free of charge.
All these resources have been informed by women and their partners who have experienced miscarriage, ectopic pregnancy or molar pregnancy and by health professionals who care for patients with pregnancy loss.
We hope they will prove helpful – but we also don’t assume we have got everything right. We are particularly keen to receive feedback on the resources so that we can develop and improve them over time.