Trans maternity report backed by NHS ‘could have harmed women’
A transgender maternity report commissioned by public health chiefs made “misleading” claims and spurious recommendations which could have harmed women, experts have warned.
Last year, the LGBT Foundation published research into the experiences of 121 trans and non-binary users of maternity services in England, claiming that 30 per cent had received no care at all during their pregnancy.
It also urged maternity services to consider using more inclusive language such as “chestfeeding” and suggested implementing “visible markers of inclusion such as posters, badges, including name badges with pronouns, and lanyards”.
NHS England initially announced plans to spend £100,000 on staff training based on the report’s recommendations, but later withdrew the scheme following a petition by clinicians expressing concerns about the report’s conclusions.
Now researchers at the universities of Oxford, Coventry and the West of England Bristol have reexamined the report and found major flaws. Respondents had given birth over a 30-year period, with many not actually presenting as trans or non-binary during their pregnancy.
They also found that survey questions had been worryingly imprecise, leading to confused results.
While 30 per cent had answered “no” to the question “did you get support from NHS or private midwives during your pregnancy/pregnancies?”, elsewhere in the survey 82 per cent said they had received antenatal care.
‘No data to support LGBT Foundation claims’
The LGBT Foundation used the 30 per cent claim to suggest that pregnant trans and non-binary people were “being put at risk” but the authors said there was no data to support the claim.
The report also recommended the use of “inclusive language for every service user” giving the example that a participant who had received a letter referring to pregnant “women” had worried they might be excluded from care.
But the experts warned that adopting inclusive language could be harmful for women and cautioned the NHS that the experiences of a “very small minority of service users” should not be used to inform policy for everyone.
Writing in the British Journal of Midwifery, they said: “What the authors recommend as ‘inclusive’ language for trans and non-binary maternity service users may, in fact, be detrimental to many other maternity service users.
“A population-level move from sex-based to gender-based referents may have a detrimental effect on clear communication, diminish accessibility of health communications and increase health inequalities for women with English as a second language, those with a learning disability, and those with low health literacy.
“If this were the case, it may contravene the ‘clear information principle’ of health communications increasing the potential for unintended adverse health consequences, and excluding some groups of service users.”
The study also found there was no evidence to support many of the recommendations, such as wearing inclusivity lanyards to make trans and non-binary people feel welcome.
It criticised the report for being “one-sided”, “methodologically flawed”, and peppered with gender-identity based language which was still contested in the scientific community.
Report author Kathryn Webb, from the Institute of Clinical Psychology at Oxford University, told The Telegraph: “It is clear that the authors of the study had good intentions, but they unfortunately did not have scientific intentions.
“This harms everyone by setting a dangerous precedent. You also do not do any group a favour by failing to properly research their needs; all groups are equally deserving of evidence-based care.
“However, it is also true that the issues with this particular study may have only been noticed because it related to transgender and non-binary people. It is not known how much else is being changed elsewhere in our health services without good basis.”
The report was commissioned by the Health and Wellbeing Alliance, a body jointly managed by the Department of Health, the UK Health Security Agency, NHS England and NHS Improvement.
The LGBT Foundation said it stood by the report, which it said highlighted that trans and non-binary people sometimes struggled to receive adequate care.
Dr Paul Martin OBE, the chief executive of the LGBT Foundation, said: “We’re very proud of our research which sets out clearly - and for the first time - trans and non-binary people’s experiences of maternity care.
“What the research shows is that trans and non-binary people have sometimes been let down by maternity services so we’d encourage everyone to listen to what they have to say so that these services can be improved.”
An NHS spokesperson said: “The scope of this work was limited and it did not impact NHS policy.”
The reason NHS must adhere to evidence-based healthcare
By Kathryn Webb, Oxford Institute of Clinical Psychology Training and Research, University of Oxford
The NHS is a huge source of national pride, not just because it is free at point of access, but because it is seen as a global lead in medical standards. Yet while many are wishing to fight to protect its free accessibility, fewer people realise that there is also a battle to keep it evidence-based too.
In a new article in the British Journal of Midwifery, my co-authors and I used just one study (the Improving Trans and Non-Binary Experiences of Maternity Services, or ITEMS study) as an example to highlight how poor research practice can influence significant policy change in the NHS.
In our paper, we dissect the study, and ask how so many methodological issues, biassed assumptions, and unsubstantiated recommendations could have been overlooked.
Originally, £100,000 of funding was allocated to retrain maternity service staff based on the ITEMS study, which contained only four participants in its key interview section. It was not until concerns were raised by maternity workers’ group With Women that these proposed changes (and spending) were paused.
However, this was not “problem solved”. We felt that it required another look in depth to truly understand what happened in the study, to remind ourselves what good healthcare policy development should look like, and why it is so important.
Study had good intentions, but not scientific intentions
It is clear that the authors of the ITEMS study had good intentions, but they unfortunately did not have scientific intentions. This harms everyone by setting a dangerous precedent. You also do not do any group a favour by failing to properly research their needs; all groups are equally deserving of evidence-based care.
However, it is also true that the issues with this particular study may have only been noticed because it related to transgender and non-binary people. It is not known how much else is being changed elsewhere in our health services without good basis.
This study is unlikely to be just a standalone error, and it may raise concern of it reflecting a wider pattern. We can see the effects of a possible wider deterioration in many headlines.
Some have pointed to the use of Stonewall to write NHS policies as evidence that politics may be replacing science as a policy determinant.
Meanwhile in July, the National Institute for Health Research announced that it will be terminating the funding for the UK branch of Cochrane - the independent organisation which provides evidence reviews to establish gold standards for clinical practice.
Finally, there is also of course much discussion still ongoing about the decision-making around Covid, and to what extent some of the historic decisions made were aligned with the evidence.
The NHS is struggling. But research is the foundation upon which everything else is built - it is not an area where corners can be cut. However, a project does not have to be expensive to be valuable, and poor methodology can be far more costly in the long run. Rushing changes based on bad data risks is unacceptable, and even good data must not be used to conclude more than they are able to legitimately.
The issue is that if we accept lower evidence standards for some things, we cannot protect our wider healthcare system. How do we justify which things require proper research if not everything? It also sets a bad precedent for future research - if something lesser will do, why fund more rigorous projects?
There can be no double standards or lower standards in evidence-based healthcare. Even when we think we know the answer, no matter how confident we are. Even when it is inconvenient. Even when we might not like what we find.
