Disabled women face significant inequalities in pregnancy care
There are 2.4 million disabled women of reproductive age in the UK, constituting 20% of women in that age group. This is the first time their maternal healthcare has been reviewed.
By Sevda Moyassari
Disabled women in the UK face significant inequalities in maternal healthcare according to a new report shared exclusively with Channel 4 News.
The London School of Hygiene and Tropical Medicine says its research shows there is an urgent need for an assessment of clinical guidance for pregnant disabled women, with evidence showing they have worse maternal outcomes.
Their report found that at the moment there is “extremely limited” guidance from the Royal College of Obstetricians and Gynaecologists and NICE regarding disability and childbirth.
There are 2.4 million disabled women of reproductive age (i.e. 15-45) in the UK, constituting 20% of women in that age group. This is the first time their maternal healthcare has been reviewed.
We spoke to three disabled mothers about their experiences.
Rameeza Mehmud has cerebral palsy and dystonia, which causes involuntary muscle spasms. She says she has faced consistent barriers throughout her pregnancy journeys.
“People judge me when I walk out with all four of my children,” she revealed. “It’s always been a fight-fighting for access, support and care. I was encouraged to get an abortion for all four of my pregnancies because of my disability.”
The maternal healthcare experience proved equally challenging for former Paralympian Carly Tait.
“I constantly had to advocate for myself during my pregnancy,” she explained. “Medical staff often seemed uncomfortable or unsure how to adapt standard procedures for my needs. I had to repeatedly explain my disability and push for appropriate accommodations.”
Other disabled mothers have had more positive experiences.
Rupy Kaur Roberts says she was greatly helped by an understanding consultant, recommended by a friend. Though she has still encountered problematic situations.
“Initially, doctors asked me to advise them on what they should do during birth… I told them you’re the experts, not me.” She also described facing stigma from people around her. “People asked ‘how are you able to look after a child when you need help yourself?”
The Labour MP Marie Tidball is pushing the government to introduce measures which will allow better understanding of how different disabilities interact with pregnancy and maternal care.
She was born with a congenital disability which affects all four limbs, and has spoken about her own experiences during pregnancy.
She described facing “systemic barriers at every stage.”
“The lack of understanding about disability within maternal healthcare is deeply concerning,” she told Channel 4 News. “I’m working with colleagues across Parliament to ensure these recommendations are implemented and that disabled women’s experiences are improved.”
- The London School of Hygiene and Tropical Medicine has identified four key recommendations:
- 1. Establish a UK committee to review the current situation of maternal care for disabled women, and define next priority actions.
- 2. Finance and undertake UK-focused research to estimate inequalities in maternal care outcomes for disabled women, and to develop and test interventions to improve care.
- 3. Develop policy and programme guidance in the UK that specifically address maternal care of disabled women, and consider disability within broader guidance on maternal care.
- 4. Develop and implement interventions to improve maternal care for disabled women.
In response to our report, NHS England said:
“It is upsetting and unacceptable to hear of cases where the care of pregnant women with disabilities fell far below the standard we’d expect…we know the NHS has much more to do to listen and learn from families, which is why we are working with the government on a ten-year plan for the NHS to ensure maternity care is safer for all women and babies before, during and after birth.”
