Jean Robinson looks at studies of death and injury during and after pregnancy and birth
I have always thought that Oliver Twist should not have been asking for more gruel, he should have been demanding meat and vegetables too, with gravy on top. That's how it is with research data; the more you get, the more you realise how much more you need.
To be fair, our requests for 'more' data on maternal deaths have met with some success. When we asked for information on deaths from suicide, Dr. Gwyneth Lewis (then in charge of the Confidential Enquiries into Maternal Deaths) listened and for the first time this information was collected.1 This appeared in the next report, again showing that suicide was at that time the largest single cause of maternal death2 and it is still a major cause. The leading cause is now sepsis.
Both these reports and later ones, showed that women who killed themselves feared their babies might be removed, or had already had them taken, for fear of their being harmed by mentally ill mothers. But it was the women who died. 'Safeguarding' was killing women.
But there was something else we asked for that we have not yet achieved:
Often when bereaved relatives have obtained records, they realise that there are differences between what has been written and what they know happened. We have seen similar discrepancies in many cases where women complained about care and had obtained their case notes. Observers may include birth companions who are health professionals themselves, or doulas who have seen many births. Yet Enquiries are based solely on case notes and reports from the professionals involved. This means that much valuable data which could be used for prevention is lost, and that the Enquiries are not as balanced as they could be.
On survivable damage and injury, there has been great improvement. Cases where women might have died, but did not - 'Near Miss' cases - are now studied, and this information is particularly useful because there are more of these, and important lessons are learned on prevention. As the women survived, their voices could be valuable. It is important that when a serious complication arises, the woman or her relatives should ask questions and obtain records.
Last year, a study showed that there is considerable variation between maternity units as to which incidents triggered a review. For example, 99% of hospitals reviewed cases where there had been maternal severe blood loss, but only 62% looked at cases where the baby had been cut during a caesarean section, or the mother had suffered trauma to her bladder or other organs. 3
But it's not just serious cases which interest us. From our busy helpline, we learn about ill health after pregnancy or birth which is not life-threatening, but which makes it hard to cope, means constant discomfort or misery, and can threaten marriages and relationships. The last big study in this country was done in Birmingham based on data collected 30 and more years ago4 Mothers were asked about problems they had after the six week postnatal check. Most symptoms had lasted more than a year, and some up to nine years. The authors wrote:
The extent and persistence of the reported morbidity surprised us: 47% of the women reported at least one new health problem.
Backache was a common problem (14%)) and had often become chronic. However it was more common after epidurals (18.9%). But backache risks were not increased after elective caesareans, suggesting the cause might be related to posture and immobility during labour. Asian women were particularly prone to post-epidural problems. Other risks which increased with epidurals were headaches, neck-aches and tingling in hands and fingers. Problems unconnected with epidurals included stress incontinence, haemorrhoids, depression and fatigue.
Yet many of these long term problems had not been reported to GPs or treated. Of course if the study were repeated now, the pattern of postnatal problems is likely to be different, but unless we look, we shall not know how common or serious they are.
That large study on over 11,000 women, published by Her Majesty's Stationery Office, described a worrying level of hidden severe and persistent ill health in women who were caring for babies and children. The authors' important recommendations in a summary article5 seem to have been forgotten:
'Consideration should be given to a re-defined mode of postnatal follow-up, providing a progressive schedule of discharge rather than routine discharge at 6 weeks.' And even the quality of the existing six week postnatal check has been criticised - and not only by our callers. In 2014 a joint survey by NCT and Netmums found that almost half (45%) of mothers thought their six week postnatal check was not thorough enough.6
We suggest that women about to have a postnatal check, or those who think theirs was unsatisfactory, should look at NICE Guideline CG37 on Postnatal Care, to see what the recommended standard is. If the standard was not met, complain. And if problems persist, keep going back.
One of the problems which often comes up on the helpline, is the difficulty of recovering from postnatal depression when you have a physical problem from the birth, and the fact that it's harder to get over the damage if you are feeling mentally low. It's a vicious circle. But many of our callers report GPs were too quick to see their problems only in terms of depression, and respond with a prescription for anti-depressants rather than support, without enquiring about the physical problems which they knew were important. Both need to be treated.7
Fatigue and exhaustion are too often dismissed as 'normal' or 'expected', yet are often severe and prolonged. This is an under-researched and underinvestigated problem, which hinders recovery from both physical and mental problems. Women simply cope in different ways, soldier on, and nowadays are keen to show the health visitor there are no problems, since HVs nowadays are seen as part of the health police.
The major hindrance to investigating and understanding postnatal illness is the current child safeguarding policy, as we have already reported in the Journal. 8,9 Researchers have confirmed our impression that women were concealing mental illness for fear of being referred to social workers at a time when, at government behest, they were harvesting babies for adoption. As we know from our cases, fears that babies could be taken away from you if you were ill, were sadly justified. The news has spread like wildfire - as correspondence on Mumsnet shows.10
This means that many crucial questions about outcomes in maternity care remain unanswered. Are there fewer cases of depression and post traumatic stress disorder after continuous care by one midwife, or after home birth, or midwifery units versus obstetric units? This can only be researched by asking women, and as too many are now afraid to tell the truth, we shall never know. Yet mental health outcomes are a crucial measurement, since they affect the development of the newborn, health of all the family, and the woman herself - including risk of suicide.
AIMS supports all maternity service users to navigate the system as it exists, and campaigns for a system which truly meets the needs of all. AIMS does not give medical advice, but instead we focus on helping women to find the information that they need to make informed decisions about what is right for them, and support them to have their decisions respected by their health care providers. The AIMS Helpline volunteers will be happy to provide further information and support. Please email firstname.lastname@example.org or ring 0300 365 0663.
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