When doctors tried to work out whether Marie Tidball would need a specially designed birth plan, one asked her to lie fully clothed on the bed and spread her legs in the air so they could see how far they could open.
The incident was one of several occasions when Tidball, now a Labour MP, felt neglected during her pregnancy and early motherhood because of the NHS’s failure to adapt on account of her physical disabilities. Tidball has physical impairments affecting all four of her limbs and had major surgeries on both her hips and legs as a child.
She is speaking publicly about her experiences for the first time to highlight a report showing that disabled mothers and their children have significantly worse neonatal and postnatal NHS care than others.
Speaking about the doctor’s request to open her legs, Tidball told the Guardian: “I was shocked, really, that that was their approach, rather than actually looking properly at some of my medical history and the notes around my hips.
“They didn’t think about how that orthopaedic surgery might interact with birth, but also [about] carrying the baby and the way the baby was lying in uterus. They just hadn’t really thought those intersections through.”
The review, authored by the academics Hannah Kuper and Danae Rodríguez Gatta, looked at 11 different studies to collate data on the health outcomes experienced by disabled mothers and their children in the UK.
The authors found that disabled mothers had a 44% higher chance of having a stillbirth than others; that they were up to 69% more likely to have a caesarean section; they had up to 70% lower rates of breastfeeding; and they could have more than double the chance of having to stay in hospital longer after the birth. The findings broadly correlated with what they found in literature from across the world.
The report said: “Few policies, guidance documents, or programmes appear to be in place to close the gap in maternity care for disabled women in the UK. Indeed, there is a general lack of attention on this topic in the UK.”
Tidball said the findings tallied with her own experiences during pregnancy and childbirth. Though her daughter was born healthy without major complications, there were several moments at which the MP found healthcare professionals had not taken her physical disability needs into account.
Every time she had blood taken, Tidball had to visit an anaesthetist to find a vein because it is difficult to find hers. She said that a mobile scanning unit, which are now being rolled out to places such as GPs’ surgeries, would have prevented this.
At no point, Tidball said, did a doctor discuss with her whether she would be able to continue wearing her prosthetic leg even as her body changed during pregnancy – nor what might happen should she develop an issue such as varicose veins.
Having waited weeks to see a consultant midwife, Tidball said her lowest moment during the pregnancy was when she received a call about her pregnancy from the genetic counselling service to discuss whether her child might inherit her disabilities.
“I was absolutely devastated,” she said. “I wasn’t interested in talking about whether or not my baby had my disability, and so the whole tenor of having had that contact really made me feel really upset.”
Then during the birth, Tidball was over-anaesthetised because the procedure to test her pain sensitivity did not account for the fact the ends of her limbs are more sensitive than the rest of her body and she has a high pain threshold. As a result, she found herself unable to use her arms during the birth and for several hours afterwards.
After the birth itself, Tidball struggled to get advice on how to breastfeed given she could not hold her baby in the traditional position. “Having to be reliant on other people really took me back to being a child in body plaster, from your chest to your ankle, where you are reliant on everybody else,” she said. “That was a pretty upsetting time.”
Like the report’s authors, Tidball said she wanted to see new NHS guidelines on how to care for disabled mothers and their children. These would include advice on pain management and clear pathways for expectant and new mothers to see specialists who understand their condition. They would also include providing adapted equipment to make it easier for disabled mothers to use, such as mobility aids or easy-to-fasten baby clothes.
As part of her lobbying campaign, she has met the health secretary, Wes Streeting, and is hoping some of her recommended changes make it into a forthcoming report into the way the NHS works. “My vision is that we get to a situation where disabled women in this country can have adequate and high quality, inclusive maternity care,” she said.
Source: theguardian.com
