Discrimination in the NHS and the effect it has on British Muslim women's reproductive health
Last year was a landmark year for the many Black, South Asian, Arab, and other ethnic minority women in Britain, who for years have been saying that there is systemic discrimination in the NHS’ maternal and reproductive healthcare services.
A number of reports and research papers were published last year, including the NHS Race and Health Observatory’s review of ethnic inequalities in healthcare, UK charity Birthrights’ inquiry Systemic Racism, Not Broken Bodies, and a scientific impact paper authored by several academics at the Royal College of Obstetricians and Gynaecologists, all making the case that when it comes to the reproductive healthcare of Black and ethnic minority women in Britain, their medical issues are taken less seriously, they receive untimely healthcare, and they are not given the means or choice to give informed consent.
"We need to build trust in the communities taking into account the cultural, faith and generational impact on gynaecological care. We need to have the inclusion of ethnic minority communities in all forms of research so that they feel comfortable taking part"
For British Muslim women who are Black, South Asian, Arab, or from other ethnic minority backgrounds, there is an added layer of discrimination.
For the last two decades, UK charity Maternity Action has argued that British Muslim women face a disparity when it comes to reproductive healthcare from the NHS, and qualitative research as recent as 2020 demonstrates that stereotyping and cultural insensitivity by NHS healthcare professionals leads to British Muslim women not receiving an adequate level of reproductive healthcare.
The New Arab spoke to three British Muslim women from South Asian and Arab backgrounds living in three different regions in the UK, whose poor experiences with the NHS’ maternal and gynaecological services have had a dire impact on their reproductive health.
Alia Samir from Slough was referred to an NHS fertility clinic in mid-2020 and had her first telephone appointment in February 2021. “The results of my tests were PCOS. I was told to take vitamins and ‘keep trying’ and I would maybe be prescribed Clomid,” Alia tells The New Arab.
The consultant was meant to call Alia in twelve weeks’ time. On the day, the consultant called much later than the assigned appointment time and so Alia missed the phone call, thinking the consultant had forgotten her appointment. The consultant then refused to rearrange the call.
“I was then sent for a tubal patency test in May 2021 which showed that my left fallopian tube wasn’t allowing the dye to spill through. This was not disclosed to me at the time and was never followed up on. I tried calling all the time and could never get through to speak to anyone to find out what was happening," she explains.
“I finally got another appointment but with a different consultant in December 2021; she said that ‘our time had been wasted enough’ and she was going to send through a referral for IVF. I had my first ever face-to-face appointment in February 2022 and she tried to brush me off by saying she was running behind schedule and wouldn’t be able to see me and my husband. I made a fuss as this was the last appointment to sign the IVF consent forms to proceed to the next step, and we knew we’d not get another appointment with her for months. Thankfully after making a fuss, she saw us and the referral was sent through.”
When Alia went for her IVF appointment in April 2022, she was told she could not proceed with the treatment because her left fallopian tube was severely distorted – the consultant disclosed that the NHS had known there was an issue with her fallopian tube for nearly a year and that if they had picked it up back then, her fallopian tube could have been saved.
Alia had to have surgery to remove her fallopian tube, an irreversible procedure which has now made conceiving a baby naturally even harder.
"The gynaecologist I spoke to didn’t listen to me at all and when I complained about the pain, she said it wasn’t the coil but I could go lie down on the table and she’d take out the coil there and then... It was horrible"
In Leeds, mother-of-one Sofia Shafaq is still dealing with the post-traumatic stress of a birth injury and misdiagnosis that could have been prevented if the medical professionals at the hospital in Harrogate – where she gave birth to her daughter – had taken her concerns seriously and allowed her to make an informed decision about her labour.
Sofia had been in labour for three days when she asked if she could have a c-section. “The pain was excruciating and I asked for a c-section and they said no. I spoke to the head midwife and said ‘I’m in too much pain, I’ve not slept for three days and I can’t do it,’ and she just said ‘oh no, it’s not something that we offer,’” she tells The New Arab.
“They gave me diamorphine and that eased the pain but also made me very sleepy. When the time came for me to push, I was falling asleep and could not push, and then they took me down and said it was going to be forceps.”
Sofia was not given the option of an emergency c-section, and the assisted delivery by forceps had serious repercussions for her reproductive organs. Soon after having her daughter, she felt a constant feeling of heaviness, pain, and discomfort in her vagina.
When she went to her GP for her six-week check-up, she was diagnosed with a prolapsed uterus and instructed to continue doing pelvic floor exercises. Several months later, things had still not improved.
“I had medical insurance and decided to go private. The consultant examined me and said, ‘this is not a prolapsed uterus, and it’s obvious it’s not a prolapsed uterus; I cannot believe you’ve been told it’s a prolapsed uterus.’”
The use of forceps had caused a huge cyst to form which had to be surgically removed. The surgeon later told Sofia that the size of the cyst had made her eyes water. Sofia is certain that being Muslim and South Asian played a part in her not being taken seriously during labour, as when she compared notes with other new mothers who were white, she discovered that they had been given a c-section as an option.
“The midwives stood watching me in agony, I had to beg for pain relief; only then did they give me diamorphine. They sent me home [from Harrogate to Leeds] three times, even though I kept saying, ‘I am in too much pain and I want to stay here because it’s where I feel safe.’ I felt like they weren't taking me seriously; I felt so vulnerable.
“I was in pain and discomfort for 14 months. I'm dreading having another baby because of everything I went through. I asked for a debrief and got one, but it was very brief and didn’t make me feel better.”
For years Fatima* from Birmingham was convinced she had PCOS. She suffered from extremely heavy periods and menstrual cramps that were so painful she would faint.
At the end of 2014, she was fitted with an IUD in an effort to relieve her symptoms, but soon afterwards, Fatima started to experience mood swings, anxiety, palpitations, and chronic pain. After complaining to the advanced nurse practitioner at her GP surgery about the constant pain, the nurse denied it was the IUD, but referred her for pain management.
“The gynaecologist I spoke to didn’t listen to me at all and when I complained about the pain, she said it wasn’t the coil but I could go lie down on the table and she’d take out the coil there and then,” says Fatima. “It was horrible.”
“I asked about endometriosis and she said I would need keyhole surgery but due to my weight, they wouldn’t have a needle long enough. I googled that later and found out that’s not the case! After having the coil for 15 months I decided to have it removed. A student doctor removed it, and it was less painful coming out than going in. The main doctor told me I should lose weight whilst I had my legs open. It was very embarrassing! It got to the point where I had to seek private medical care.”
In the end, an MRI scan confirmed that Fatima did have cysts. “I spoke to white British and Canadian colleagues who had similar issues and was genuinely surprised at how much NHS support they’d had. I’d have to piece things together through internet research, talking to others, and trying to navigate the NHS. In the end, I only got answers because I sought private healthcare. I’d say there were elements of potential racial discrimination from the system itself, or it’s a postcode lottery – perhaps I didn’t live in the same area as my colleagues who had greater access to better NHS support. I am a professional working woman. I can advocate for myself and yet I couldn’t get anywhere for years.”
"The same problem is passed generationally where a wall of silence, shame, and being told to ‘shut up and put up’ is enforced. This makes the woman feel she is the one being a nuisance and change does not happen for all women"
According to GP and women’s health champion Dr Nighat Arif, who appears on BBC Breakfast and This Morning regularly to talk about women’s health, the lack of advocacy for the reproductive healthcare of British Muslim women from Black, South Asian and other ethnic minority backgrounds is rooted in white patriarchal medical models and systemic and internalised misogyny in both social and cultural communities.
“The same problem is passed generationally where a wall of silence, shame, and being told to ‘shut up and put up’ is enforced. This makes the woman feel she is the one being a nuisance and change does not happen for all women,” Dr Arif explains.
“The complexity comes for Black and Brown women who also face a long history of systematic racism and dehumanisation in gynaecological care. It is critical to understand that many gynaecological treatments or investigations have been performed on Black women without consent or they have historically had enforced sterilisation and the current medical model is based on white patriarchy that means change doesn’t happen for ethnic minority women.”
Dr Arif agrees that recent reports that document the experiences of women like Alia, Sofia, and Fatima and recognise the systemic discrimination in the NHS have been a watershed moment. But beyond official reports and scholarly articles, what actions need to be taken to rectify the situation?
“The first step is recognising and having uncomfortable conversations around medical racism and misogyny,” she says. “Then we need to build trust in the communities taking into account the cultural, faith and generational impact on gynaecological care. We need to have the inclusion of ethnic minority communities in all forms of research so that they feel comfortable taking part.
"This means clinicians, stakeholders and pharmaceutical companies need to provide a seat at the table for all to make a change in services. Finally, we need role models, be storytellers and empower each other in our ethnic minority communities to lift one another in places where real change happens.”
It’s understandable that after reading such damning reports and poor anecdotal experiences, as a British Muslim woman, this will cause further anxiety. So, what can a British Muslim woman who finds herself in a similar situation do to advocate for herself?
“Do your research,” advises Dr Arif. “Look at accredited websites such as the NHS, Public Health England or even accredited, verified doctors who are providing gynaecological or reproductive health advice in mainstream social media. At your GP surgery enquire if there is a doctor that specialises in women’s health," she adds.
“Ask for a longer appointment at the GP surgery and even an interpreter ahead of your appointment so you can fully explain your situation. I also fully endorse that if you feel you are not being taken seriously, ask for a second opinion. In my ten years as an NHS GP, if I am unable to provide a management plan for a patient, I encourage my patient to get a second opinion.”
Yousra Samir Imran is a British Egyptian writer and author who is based in Yorkshire. She is the author of Hijab and Red Lipstick, published by Hashtag Press.
Follow her on Twitter: @UNDERYOURABAYA