Research published today (15/09/16) by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.
A survey of women with physical or sensory impairment or long term health conditions highlighted how – despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”, while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.
Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”
Speaking in advance of the publication of her book Why Human Rights in Childbirth Matter and the Birthrights #newchapter campaign linked to the launch, Rebecca Schiller, chief executive of Birthrights said, “this interim report suggests that there are significant human rights issues at stake for disabled pregnant women in the UK and Ireland. More than a quarter of women we surveyed felt that their rights were either poorly or very poorly respected. This is unacceptable and we will be working hard to address this over the coming years.
After Birthrights’ dignity in childbirth survey (2013) we became concerned that the needs of disabled women in the system were not being met. Though it’s heartening to see how overall most women were satisfied with their care and hear some positive stories of excellent practice there is clearly progress to be made. The women surveyed asked overwhelmingly to be listened to. It is crucial to listen to and trust women to ensure the system is genuinely meeting their requirements and that they are at the heart of decisions about their maternity care. The Equality Act 2010 places a duty on the public sector to provide services that meet the diverse needs of those who use them yet participants indicated worrying lack of attention to accessibility of maternity services and facilities for women with a range of disabilities.
The survey is indicative of a wider problem around women’s rights in childbirth that can impact on all women and often most forcefully on the most vulnerable . This month Birthrights is launching a campaign for a #newchapter in pregnancy and childbirth to ensure safe, quality, respectful care is available to all women. Pregnancy and childbirth are a vulnerable time and the physical and emotional impact on women and their babies of a negative journey through pregnancy and childbirth can be severe.”
Professor Vanora Hundley of Bournemouth University added, “while this is a small survey the findings echo the recommendations of the National Maternity Review published earlier this year, which highlighted the importance of personalised, woman-centred care with continuity of carer. It is clear that these are important considerations for all women, but particularly for those women who have a disability.”
Read the full interim report here. We expected the full report to be released in January 2017 when the qualitative research is completed. With thanks to the Matrix Causes Fund for supporting this work.