Women Are Receiving Inconsistent Advice And Support After Miscarriage

'I didn’t feel I had any closure.'

Women who have experienced miscarriage are not being given consistent advice by medical professionals, a new report warns.

The research looked into the standard of support women receive when deciding how to dispose of their pregnancy remains.

The study, led by researchers at the University of Birmingham and the University of Bristol, found that women are often not told all their options.

In light of the results, the researchers have called for more to be done to replicate good practices found in some NHS Trusts and hospitals.

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The findings are the result of the first stage of ’Death Before Birth’, a two-year study looking at the experiences of women who have gone through potentially traumatic pregnancy loss, either through miscarriage or termination for foetal anomaly, or experience of stillbirth.

The researchers looked at the extent to which the Human Tissue Authority (HTA) Guidance had been incorporated into hospital policies for the management and disposal of pregnancy remains within NHS England.

The guidelines state that women should be made aware that there are options for disposal of remains and should be given verbal or written information about the options, “given the opportunity to discuss them, and supported in an individual and sensitive manner to ensure that she can make a decision that is right for her”.

The researchers also examined the extent to which those who were providing bereavement care to women – particularly, professionals in healthcare service and the funerary industry in England - incorporated the HTA Guidance within their practice.

The researchers found that there is inconsistency regarding the range of information and support offered to women.

For instance, patient information leaflets often do not contain information about management and disposal of remains, meaning the level of care and information a woman receives is dependent on those caring for her.

In light of the findings Corinne, a 47-year-old from Birmingham, told the BBC she was not informed about burial options after she miscarried at 13 weeks.

Corinne brought her pregnancy remains to the hospital in an ice cream tub to be checked and said they were taken away from her without warning.

“I felt this visceral feeling of trauma at being separated from my baby and I immediately burst into tears,” she said.

“For a long time I didn’t feel I had any closure - I had no baby pictures or scans and no records.”

She added that it would have made a huge difference if she was given the chance to bury the remains.

The report highlighted a need for clarity on whether disposal of pregnancy remains is discussed as part of the treatment process after pregnancy loss, so women like Corinne are able to make informed decisions.

Commenting on the findings Dr Danielle Fuller, from the University of Birmingham, said: “We hope that the report will assist the Human Tissue Authority as they move towards a review of their Guidance.”

The study found that although there was a range of ‘good’ and ‘improving’ services across England, there were also problematic variations in services.

It said that some policies, consent forms and patient information leaflets within some trusts and hospitals are hard to interpret and change on an ad-hoc basis.

Dr Sheelagh McGuiness, University of Bristol, said: “In general, we found women are being offered some choice for disposal of pregnancy remains although it is rare for trusts to either offer or inform of all possible options.

“There was confusion and ambiguity about the meaning of ‘sensitive’ incineration and whether it was an appropriate method of disposal.”

In light of the findings, the team made a number of recommendations to the Human tissue Authority (HTA). These include:

• Clarification on what ‘sensitive incineration’ means and the legitimacy of offering this method for disposal.
• A more standardised approach to provision of care.
• Consideration should be given about whether the disposal of remains of pregnancy be brought within the meaning of ‘treatment’ of miscarriage and as such discussed as part of the consent process.

In a statement given to HuffPost UK, Sarah Bedwell, director of regulation at the HTA, said the organisation welcomes the report from the Death Before Birth Project.

“It is important to us is that, where possible, women have a choice as to how to dispose of their pregnancy remains,” she said.

“This means that medical practice must reflect the woman’s own circumstances, values, understandings, and beliefs and that information must be made available about what options are open to women.”

She highlighted that the HTA guidance on the sensitive handling of pregnancy remains is available online for professionals who work with women who have experienced a pregnancy loss or termination to access.

“This guidance sets out what is expected, and how women should be involved, in decision making about the sensitive handling of pregnancy remains,” she said.

“Currently, the sensitive incineration of pregnancy remains is an option made available to women through the NHS, and at other providers. We recognise that there is a wish for further clarity around the term ‘sensitive incineration’, and we will continue to look at, and work with others, on this.”

You can contact the below organisations for help and support on pregnancy loss:

The Miscarriage Association: helpline 01924 200799 Mon-Fri, 9am-4pm

Tommy’s charity: information on miscarriage, stillbirth and premature birth.

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