The Black British trailblazer who transformed thousands of lives

‘I bet you are a twin,’ Dame Elizabeth Anionwu says with a warm smile as we begin our chat over Google Meet. Her calm presence fills my screen, and I laugh as I confirm her assertion. ‘That’s interesting’ she says next, setting the tone for a conversation full of warmth and easy rapport.

In Yoruba culture, which originates from Western Nigeria, twins are given the names Taiwo and Kehinde. Kehinde, the name I bear, is traditionally given to the younger of the two. It’s a beautiful part of my heritage, and Dame Elizabeth’s instant recognition of my culture adds another layer of meaning to our interview.

Despite her ground-breaking work as the UK’s first sickle cell and thalassaemia nurse specialist, Dame Elizabeth’s warmth and humility are what truly shine through. Even as we discuss her decades-long career transforming healthcare for marginalized communities, she remains deeply human.

One of the few nurses to be awarded the Order of Merit, a CBE, and a Damehood – and the only black nurse to hold all these three accolades – Dame Elizabeth Anionwu’s story begins with a humble yet complex roots. 

Born to a Nigerian Igbo father and an Irish mother, her early life was marked by the challenges of being raised in a Catholic children’s home in Birmingham.

Her mother was the first in her family to attend university – Cambridge, no less – but had to leave her studies when Elizabeth was born, navigating single parenthood in a conservative society. Though her family never rejected her or Elizabeth, the strain was immense. With no partner to help, Elizabeth’s mother made the decision to place her daughter in Nazareth House, a Catholic children’s home in Birmingham.

‘My mother was in her second year at Cambridge doing a classics degree, and she dropped out to make a home for me,’ Dame Elizabeth explains. ‘I stayed in the children’s home for nine years because that’s how long it took for my mother to sort herself out.’

Dame Elizabeth’s mother eventually married and although she moved in with her mum and new husband in Wolverhampton, the stay was shortlived, as he physically abused the little girl over her skin colour and she eventually went to live with her maternal grandparents.

Growing up, Dame Elizabeth faced her own struggles, including battling severe eczema and undiagnosed asthma. It was a nun’s compassion that eventually helped shape her career decisions to become a nurse.

‘There was a nun I called the “white nun” – she wore a white habit and she used to make me laugh while changing my dressings,’ remembers Dame Elizabeth, 77. ‘She used distraction therapy, and her care left such an impression on me. I knew from a very early age I wanted to be like her – but not a nun, I wanted to be a nurse.’

The absence of representation in her formative years fuelled her dedication to uplifting others who shared her background. ‘I was the only Black child in the children’s home, and I never met anybody who looked like me until I came down to London at the age of 18 to study nursing,’ she reflects. 

As she matured, Dame Elizabeth’s focus sharpened on the health disparities affecting the Black community. ‘As an adult, I got very interested in Black health issues, and that’s what led to my interest in sickle cell anemia, for example,’ she explains.

However, sickle cell anemia wasn’t the only issue that caught her attention. Dame Elizabeth’s interest expanded to other pressing health disparities affecting the Black community, particularly in relation to access to quality healthcare and institutionalized racism within the NHS.

One of the most persistent challenges the young nurse faced was convincing those in positions of authority, both within the NHS and the government, to recognize sickle cell disease as a serious health issue in the UK. 

It began with her initial discovery of how critical nurses were in the care of sickle cell patients. After learning from her brief trips to the United States, Dame Elizabeth realised they played a significant role in managing the disease, a contrast to the physician-led approach she had observed in the UK. ‘When I discussed this with Dr. Misha Brozovic, a consultant hematologist, I expressed my desire to get professionally involved with sickle cell care,’ she recalls.

Dame Elizabeth remembers that. Dr. Brozovic not only supported her but also secured funding, enabling her to become the UK’s first sickle cell nurse specialist in 1979.

However, although she was gaining professional experience and advocating for better care, those in positions of power within the health still service remained sceptical. ‘There was a view in many quarters that sickle cell was just a minority issue,’ she explains. ‘People in authority, particularly within the health service and government, didn’t see it as a priority. They hadn’t encountered the disease personally, and many didn’t even know anyone affected by it.’

This ignorance extended beyond the NHS to government policymakers as well. The comparison to cystic fibrosis, a long-standing inherited condition that primarily affects white communities, was crucial. ‘When we pointed out that sickle cell disease actually affects more people than cystic fibrosis, the conversation started to shift,’ Dame Elizabeth explains. ‘We were able to highlight how the lack of resources and recognition was contributing to health inequalities.’

She reflects on the frustrating moment: ‘It often felt like banging my head against a brick wall. The decision-makers needed to hear facts, and when we presented them, they had no choice but to listen.’

From there, Dame Elizabeth’s career also laid the foundation for the broader integration of nursing into the sickle cell care team in the country. Together with Misha Brozovic in 1979, the pair set up a centre in a London hospital to provide information, screening and genetic counselling for those at-risk of sickle cell. It soon became a model for 30 further centres.

Dame Elizabeth speaks candidly about the progress and ongoing challenges in racial equity within the NHS. ‘Progress has certainly been made in relation to many aspects of care for sickle cell disease, though there are still some issues,’ she explains, highlighting one ground-breaking advancement which was the inclusion of sickle cell disease screening in the NHS’s routine new-born heel prick test. 

‘I thought it was quite revolutionary at the time,’ she recalls. “Young babies can now be diagnosed early, even before symptoms arise, allowing for preventative care, like protection from severe infections.’

This early detection has significantly improved life expectancy for those with sickle cell disease, allowing families and healthcare providers to proactively address the disease from birth- a powerful shift in care for the Black community.

Dame Elizabeth’s story sheds light on the challenges of being a Black woman in the NHS at a time when representation was scarce. Her memoir, Dreams From My Mother, offers a candid look at her personal struggles and triumphs, from navigating her mixed heritage and facing societal barriers to becoming a pioneering voice in healthcare. 

‘It’s important people share their stories,” she emphasised. ‘I’ve shared mine in my memoir, and through it, I hope to inspire others to own and share their experiences.’