Dame Elizabeth Anionwu DBE FRCN, UK’s First Sickle-Cell & Thalassemia Nurse Specialist

We are honoured to welcome Dame Elizabeth Anionwu DBE FRCN to The Millie Podcast. Recently named a ‘BBC 100 Women of the Year’, Elizabeth is Emeritus Professor of Nursing at University of West London, and the UK’s first sickle-cell and thalassemia nurse specialist. She has continued her work into retirement, recently bringing the nation’s attention to the devastating impact Covid-19 has had on Black and Asian communities.

Many people heard her name for the first time at the Brit Awards, when Dua Lipa honoured Dame Elizabeth in her acceptance speech. "She has spent her stellar nursing career fighting racial injustice, she has also spent so much time and is a strong, strong advocate for protecting frontline workers"  

Born in Birmingham in 1947, Elizabeth is of Irish/Nigerian heritage, which, along with being born to a single mother, greatly influenced her upbringing and identity. She writes about this in her recently released memoirs, Dreams From My Mother. It’s an incredible story about childhood, race, identity, family, hope – and how this shapes who we are.  We can’t recommend it enough!

Millie Podcast host Chelsea Brown and Elizabeth cover a lot in this episode – Elizabeth’s book, her early life living in care in a convent, sickle cell, travelling to Nigeria to meet her family, mentorship, and so much more. Elizabeth is a true hero, and her thoughtful reflection and insight into her own life, medicine, and the world at large has so much to teach us!

Visit here to find out more about Dame Elizabeth and visit here to purchase here Dreams From My Mother.

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You can also read the interview below:

Chelsea Brown: I'm so excited for this opportunity to speak with Dame Elizabeth Anionwu DBE FRCN, Emeritus Professor of Nursing at the University of West London and the UK’s first sickle cell and thalassemia nurse specialist.

Dame Elizabeth Anionwu DBE FRCN: Sickle cell anemia. It's an inherited blood disorder. The symptoms include a sort of clotting and this can cause severe pain.

Chelsea: Recently named a BBC 100 Woman of the Year, Dame Elizabeth has continued her work well into retirement, recently bringing to the nation's attention the devastating impact COVID 19 has had on Black and Asian communities.

Elizabeth: Those who have long term conditions as we call them, such as sickle cell disease, are particularly vulnerable Black and minority ethnic communities were severely affected.

Chelsea: At age four, Elizabeth was inspired to become a nurse while in care at a covent. A nurse nun treated her childhood eczema in an expert, sensitive and compassionate manner, which was in stark contrast to the treatment she received from the other nuns. It made an indelible impact on her life and in turn the lives of so many other people.

Elizabeth: It was an ice cream that they used to put over it. Cold tar cream applied was just beautiful. And then they would put some Gores over it and then bandage it up. Now I never wanted to be a nun, I wanted to be a nurse and I kept to that decision and it was a wonderful career that I had in nursing.

Chelsea: In 1979, she worked with Dr. Misha to create the UK's first Sickle Cell and Thalassemia Counselling Centre in the London borough of Brent, which was the first of over 30 centres they opened across the country. She considers this to be one of her greatest achievements.

Elizabeth: You know, I'm mixed race. I'm a single parent, but I've done well in life. And yet my early life started out in a more troubled way.

Chelsea: Born in Birmingham in 1947, Elizabeth is of Irish-Nigerian heritage, which along with being born to a single mother, greatly influenced her upbringing and identity.

Elizabeth: Yeah, I knew I was different. I never met a nonwhite person until I was 18. I remember washing my face 10 times with red carbolic soap to try and become white like my friends.

Chelsea: She writes about this in more detail in her recently released memoir, Dreams From my Mother, which I urge you all to pick up and read. It's an inspiring story about childhood race, identity, family, hope, and how all of this shapes who we are. It is my sincere honour to welcome Dame Elizabeth Anionwu, how is the weather today in London?

Elizabeth: We had some yesterday, but it's quite gloomy looking outside. I haven't been out. I usually go out for a walk, but I've had a relaxed morning.

Chelsea: Oh, good. Perfect. Well, first of all, thank you again for joining me. I know this will be clear to anyone who has read your book, but what motivated you to write Dreams From my Mother?

Elizabeth: It was friends and people I had worked with before retirement who, having heard bits of my life story, particularly my early years felt that I should write about it because I have done well in life. And yet my early life started out in a more troubled way. And they felt that it was important. You know, I'm mixed race. I'm Nigerian-Irish heritage, single parent, but I've done well in life, eventually. People felt that this more positive narrative needed to be shared because often some people in my situation, there's often thought to be won't achieve very much. The view is: the expectations are not as high. And so people felt that this is an example of a more positive outcome. Basically people slightly putting pressure on me to do it in the nicest possible way. But so I had a period of quiet time. I thought, let me try it. So I self-published originally. And then a publisher came along and so it became Dreams From my Mother. And also I did an audio recording of the book as well.

Chelsea: I own your book and I also listened to the audio version of your book. I have to say it was very special listening to you narrate the emotion and the passion and the way you spoke about your mother. Can you tell us about Mary Furlong and what role she played in your life?

Elizabeth: Yes, certainly. So my mother was called Mary Maureen Furlong, that’s her maiden name and she was born in the 1920s to first generation Irish family. Her parents had been born in Liverpool, England, where there is a big Irish population and her grandparents of the generation that emigrated from Ireland in the, I think it was the 1880s. So that's my mother's heritage. My mother was born in Liverpool and then the family moved to Stafford, which is in the Midlands in England, not too far from Birmingham. My mother was a very gifted child and she got a scholarship to Cambridge University to study classics in the last year of the second world war so that was 1945. She was doing extremely well in both her first year and her second year, she won prizes in each of those years, but she became pregnant with me in her second year of study and dropped out from university.

Chelsea: Yes, I found myself deeply empathizing actually for her experience and how she had to fight to keep you, that was remarkable and just the, the story and the way you told it. Can you describe how different things were at that time for women who had children out of wedlock?

Elizabeth: Oh gosh, so with talking about 1947 and remembering that my mother was Catholic. She came from a very devout religious family. She was very loved, it was strict family, but very, very loving family. At that time for a woman to become pregnant in a Catholic family, you only have to read or even watch the film Philomena to really get an understanding of the forces that were there at that point. But actually there was a difference from my mother, if you compare her story with that of Philomena, because Philomena was hounded out of her home she was treated very badly by the Catholic church. She faced a lot of stigma that didn't actually happen with my mother. She stayed with my grandparents, they did everything they could to work with the University of Cambridge to enable her to go back and complete her degree once she'd had the baby.

I dunno whether the university realized she was pregnant because they, they talked about her having a nervous breakdown. So that could show the stigma around revealing that she was pregnant. And she had to stay in the family home, she was forbidden to go out. So there was the shame and that they didn't want the neighbours to know. But the Catholic church did bend over backwards to provide a mother and baby home for her to look after me, what was thought to be temporarily but that lasted a lot longer than that in the end. But you could see the differences there. And I think it was because my grandparents were very close to the parish priest, particularly my grandfather. They were a low middle class with a very bright daughter who had got this scholarship to a very prestigious university to study a subject like the classic.

So I think she was treated differently. She was in a more favoured position than many single pregnant girls, women in Catholic homes. Looking at the positives, that all helped me eventually. And I mean, the sad thing was that my mother never fulfilled her academic opportunities, although she was given the chance, but she wanted to desperately make a home for me and to her, all through her life, her first commitment and love was for her children, that those came, they came first before anything else. So I think she subsumed a lot of her ambitions in her to protect her children and give them the best start in life that she could.

Chelsea: It was really a heartbreaking story, but a resilient story to hear and to read really empowering. What was it like growing up in the convent?

Elizabeth: This was a Catholic children's home called the Nazareth house, in Birmingham. It was part of a network of children's homes with that name, my carers, if you want to call them that were the nuns. I only saw nuns and it was all I knew, it was my home for the first nine years of my life. And overall I was very happy. And in fact, when I left, I remember I do write about it on the bus from Birmingham to Wolverhampton with my mother. I was sobbing my heart out because I was leaving my friends. And most of the nuns were very nice. It was all I knew. So I was going, entering into this very strange, slightly frightening world, you know? New world. There were downsides but not as many as you see in other narratives in care as they called it, in children's homes, whether they be lay or religious.

Some of those accounts that I've read are individuals brought up in convents, such as Nazareth house have been very negative. They've been subject to physical abuse, sometimes sexual abuse. So, you know, I thought my goodness, how lucky I was. I did get punished quite severely, those children like me who wet the bed, was particularly harsh punishment where we had to stand on a chair, each of us had to stand on a, with our urine soap bedsheets draped over us. With our arms out, stretched underneath and wrapped on our knuckles with a ruler or something when our arms did drop. I remember punishments like that, but overall, I had more happier experiences than negative. So for example, Irish dancing, which I absolutely adored being taught to learn the piano and being very, very sad that when I left, I never had the opportunity to carry on with piano lessons, music. I obviously had an ear for music, but I've loved music in any form.

Chelsea: I loved how you talked about being in Paris and the music and the film.

Elizabeth: Yeah. Wonderful nine months of my life in Paris.

Chelsea: It sounded like it. I would love to ask you more about your experience as a child. And can you tell us about the wonderful nun who treated your childhood eczema and how that made a difference in your life?

Elizabeth: Yes. I called her in my own mind, the white nun. Where all the nuns were white, they were predominantly Irish nuns, but she wore a white habit rather than the traditional black habit that nuns wear. She was in fact a nurse, so she was a nun, but she was also a nurse. And I would go to, I presume the sick bay, I very vague memories of the actual location, but I had very severe eczema in my armpits and behind my knees. It would be treated, there was an iced cream that they used to put over it, coal tar cream, because although my skin is brown, when the eczema flare up badly, it would get very red, that area hot and itchy and painful. So to have this cooling coal tar cream applied was just beautiful.

Then they would put some gauze over it and then bandage it up and it would feel fine. And of course it stopped me from scratching because I had the bandage over it. But the difficulty came when it was time to change the dressing because by this time the gauze had dried onto the coal tar that stuck onto it. And most time, if it was another nun that was taking it off, it wasn't a nurse. They would just tear it off and it would pull off the skin and it would bleed and it would be painful. I would be bawling my little eyes out and screaming. Fortunately, most of the times I went, it was the white nun and she was wonderful because she used distraction therapy. She would use what I thought were rude words like bottom, you have to remember, this was a very Catholic environment.

Nuns were told were the brides of Christ, very holy women. So I didn't expect a word like bottom to come out of her mouth. Right, I just howled with laughter. And of course when I was laughing, I hadn't realized she'd whipped the dressing off and I didn't feel a thing. I didn't feel any pain. I just thought she was the most wonderful person on Earth. Now I never wanted to be a nun, I'd had an overdose of religion. In fact, I lost my faith as a teenager, but I wanted to be a nurse when I found out that that's what she also was. And I kept to that decision and it was a wonderful career that I had in nursing.

Chelsea: Ah that's so amazing. So would you say she was one of the reasons why you became a nurse?

Elizabeth: She was the reason I became a nurse. She was the only, she was the only reason.

Chelsea: Have you told her this?

Elizabeth: No because I left the children's home when I was nine and I never went back there and it's long since been pulled down. It wasn't possible to have contact, didn’t have mobile phone, the laws of the internet to sort of link in, no, I never had the opportunity to tell her.

Chelsea: Wow, that's amazing. And I think we all have that person in our life that we can remember who secretly inspired our future. In your book you say it was a gradual realization that your skin colour would have an impact on you and your family and those around you. How did that become clear to you?

Elizabeth: Well, I never met a nonwhite person until I was 18 when I started studying to be a nurse in London where the students were from all over the world. But I gradually realized that my skin colour was different to everybody else and I remember washing my face 10 times with red carbolic soap to try and become white, like my friends. Having such sensitive skin, this wasn’t such a good idea and I ended up in sick bay so yeah, I knew I was different. And there were various ways that that was brought to my attention. Being told by one nun that I couldn't be Humpty Dumpty, that another nun had selected me to be and seeing these two nuns argue with each other and fortunately my nun winning and I did play Humpty. So that brought it home to me that I was different, having a question where'd you come from?

But I quickly realized that the answer that I was giving, which was Birmingham, that wasn't accepted as the answer by many people. And I said, no, no, no, where'd you really come from. Not realizing until I got a bit older that they were challenging me because of my skin colour. Because to be brown skin, you couldn't possibly be English or British. You must either have come from overseas, from another country or your parents must have come from overseas. My father was Nigerian, but of course, I didn't know. I never had anybody talk about my father when I was growing up. And I, I didn't find him until I was 22. So as a child, because nobody spoke about my father, I never asked about my father. I couldn't how, as a child, why my skin colour was different from the others. I didn't know about genetics, reproduction, nothing like that. Of course and it was just something that was never spoken about. Yeah. Ever.

Chelsea: Can you tell us a little bit more about what it was like being a Black child, born into a white Irish Catholic family in 1947? I mean, from reading your book, why was there a feeling of shame around this and what lengths did your family go to keep it hidden? And how did that affect you growing up as an adult?

Elizabeth: Well, there were two key factors, as it was called in the illegitimacy, a child born outside of law. Legal status, lawful marriage and being mixed race. And when we're talking about mixed race, we're not talking about white Irish and white Scottish. We're talking about white Irish and a Black Nigerian parent. You have to remember in 1947 and certainly in the Midlands, in the middle part of England, you very rarely saw somebody with a skin colour that wasn't white. So you add on all of this the stigma, the religion, the rarity of this situation. And I think it explains the reaction, but it also makes me realize, as I said earlier, that children, in my situation, majority of them received a much harsher experience than I did.

You had at that time, the GI babies. So we had a huge presence of American GIs because of the second world war white, British women, having their children. There's a beautiful book called Brown Babies and these were the GI babies, brown babies. And when you hear of the experiences that a significant number of them ended up in care for the whole their lives and some had very negative experiences. A lot of people say my, my book is very positive and that's what people like about it, because often similar stories are really very tragic and very harsh in what's happened to individuals. Again, that goes back to why my friends and colleagues urged me to write my story because they were much more familiar with these much more tragic outcomes for some.

Chelsea: Absolutely in your book is in incredibly inspiring. You share a memory of when you were out for a walk and your great aunt introduced you as a child who had been adopted by your grandparents and how it gave you mixed feelings.

Elizabeth: Thank you, yes. I was very surprised for an awful lot of reasons. First of all, I was very close to my great aunt, she was very loving. Also, so she was a very devout Catholic, very religious something. Hold on. She's telling a lie. That really struck home because I'd been brought up in that same religion in a convent? You mustn’t lie and you had to go to confession if you lied. I think it, hold on, she’s lying. Why is she not telling this woman that I am actually related to her? I'm not adopted, I'm not fostered what's going on here. And I was very sad as well. It was the first time I realized that she couldn't bring herself, my great-aunt to tell anybody that I was related to her.

And a moment I couldn't discuss with her. Cause again, I think as children, you know, when to talk about something, when you not to talk something. Also, I was surprised, I really was. And you literally just have to swallow it and just get on with. But it's there at the back of your mind all the time. She couldn't even tell them I'm related to her. Hmm. Okay.

Chelsea: That must have been very hurtful and confusing for sure.

Elizabeth: It was hurtful, but I still loved her. I always look forward to going to stay with her and her sister, Great Aunt Lil, as a teenager in the Northwest of England, cause they looked, they really looked after me. And that was the only time I experienced that because, well, I suppose I didn't meet many of their neighbours.

Chelsea: I think this says so much about your capacity to positively and significantly impact people's lives with small kindnesses and empathy.

Elizabeth: Yeah, I'm not a psychologist, so I did good to understand where all the, yeah. It was when I brought my book out and the feedback I got, well actually before that, because when I decided, yes, okay, I will write my memoirs, I read a lot, like many people do. I love biographies and autobiographies, I'm slightly addicted to reading them actually. But some of them, I just would think, I wonder if they've asked anybody else's view of themselves, what are other people's perceptions? Because this seems to be too rosy a picture of yourself, I don’t know. And so I decided to use my research experience and interview that about 31 people who knew me in various stages of my life, either because they were relatives or friends or colleagues from when I worked. I said to them, just please be truthful and you know warts and all, I want your perception of me as during the period that you've known me, strengths and weaknesses difficulties, and I got some of it. I don't think I got it.

Chelsea: Yes. I was going to say, did you get any, did you receive any brutally honest reviews?

Elizabeth: Yes. I that I don't suffer fools gladly. Several people told me that that I'm impatient. And I sometimes don't understand that I'm rushing ahead in my thoughts of other people and that some people are having difficulty keeping up with me and I'm not aware of that. So in a sense that I'm not actually really listening, watching and listening to people, I'm not watching, people's reactions to see, are they with me? Are they, are they absorbing it? Are they puzzled by it? What she said, it's different when you're teaching you, you're very good with students, but she said, when you are with your friends, sometimes you just race ahead on an issue. And we are struggling to keep up with you and you don't realize that, it's like, oh, that's Elizabeth. You know? So I think that's very helpful feedback.

Chelsea: Yeah, that is helpful feedback. You've talked about how the first time you fully felt accepted was after your trip to Nigeria, with your father. Can you describe how it felt and what it taught you about yourself?

Elizabeth: Well, as I've mentioned, I didn't meet my father until I was 22. And that a huge experience in my life. My mother and my mother's family have all been extremely loving and caring towards me, but there was this big gap, particularly as it was my father that gave me my skin colour, which is what society views you as. Also just not having a father figure when many of your friends talk about their fathers often in a positive way. I'd had a very difficult relationship with my stepfather for the 20 months that I lived with him and my mother. So male relatives, the few I had, the only one I had as a child well, it was rather negative. So I was a bit fearful of how I would relate to my father. I was over the moon when I found him and he was so loving towards me. I never got any rejection whatsoever, but I couldn't even call him dad or father for the first few weeks. It was my stepmother who sort of said, you can't call him Lawrence, he is your father.

Chelsea: I think that's such an amazing moment. What did that feel like in the moment? Because meeting the stepmother, you never know. That was another key moment for me that stood out because that's acceptance, that's comfort. So in that moment, what did that feel like from her?

Elizabeth: Well, for me, the biggest thing was when my father gave me a big hug and I would recommend to any parent who's long, long lost child appears on their doorstep, that's what you do. Because it's very scary for the child, because you've got all these anxieties. Will they like you? Because we've read horror stories of when people have met a biological parent and it hasn't worked out, it's very, very sad or where the biological parent doesn't even want to meet the child, which is even worse. There is all these anxieties and it was, they were just wiped away when my dad gave me that big bear hug. I did notice my stepfather sort of looking down at me, sort of quizzically, which was understandable again.

And, we got on, it wasn't as close a relationship as with my father, but we managed and it did work out considering as I was 22 when I first met them both. And then but, I knew my father for eight years before he died. I just thank God I was lucky to find him and to have a positive relationship with him and to know him for eight years and to know him both in London and when he went back to Nigeria to live permanently. So yeah, I saw him in different settings.

Chelsea: And can you take us back to that first trip to Nigeria? You talk about the dancing and then learning the language, what really stands out and for those who can't travel right now, can you take us back to that moment?

Elizabeth: Yes. Well, the first thing that hit me getting off the plane, which I see described in many people's books is being enveloped by warmth. Don't forget I'm coming from cold England, so I love the heat, I hate the cold. So that went down very, very well for me, and then being totally accepted by my family and what a family! The huge extended family of cousins and aunties and uncles, and, oh my goodness, it was incredible. And I've got a very poor memory I have to say, how am I going to ever remember all their names? And in the end, I thought don’t bother, just relax with them. And that worked, they would tell me off if I didn't remember their name, but then they would give me a hug.

There was this expression, well, you've tried, you've tried. In other words, they were very pleased that I'd made all the efforts that I had done to find my father to come to Nigeria. And even though I couldn't speak the language, they were happy that I was there, that I was prepared to try all the different food stuffs and that I love most of them, that I would learn a few words so they could see that I was attempting to learn the language and that I loved music. I'm a very curious person that helped enormously. And they were so loving and they really looked after me and also they were very funny. I'd got a great sense of humour. I loved laughing, even when I saw the deceased person and the gentleman lying in states, so to speak on his bed, in the home, I'd never, I've seen dead people in the hospital, but I'd never seen a dead body in the person's home.

Nobody told me that I was just taken into this room and then when he was being buried, and the wailing and the noise level was incredible. And then one of the relatives, wife, I can't remember, trying to throw themselves, appearing to try and throw themselves into the grave. Then, you know, my father realizing I was absolutely shocked. My heartbeat must have just been off the wall. And he just made me laugh by saying, oh, you know, those people who screamed the loudest probably were least loved by the person on the walk.

Chelsea: Now do you have a favourite saying in Igbo that you can share with us?

Elizabeth: I tell you what really I love, there's a, there's an expression called nno. And it's “nno” and it means I'm sorry for you. And so for example I might have hurt myself hit my hand against something. This is when I first remember, and somebody said “nno”, and I knew it was and I would turn and say, it was okay, it was my fault. And then somebody explained to me, culturally, that's not what it means. They are expressing sympathy that you have hurt at yourself. I thought, wow, isn't that wonderful. What empathy there. So I just thought that was a lovely expression.

Chelsea: It is, yes. Thank you. You talk about how we all grow up in a bubble. So Black, white, women, men, we're all in this bubble and it takes other people experiences, in this case a trip, cultures to make us realize what's going on elsewhere. What can we do now to get outside of our bubble?

Elizabeth: Oh, I think there are so many ways: reading, watching television, watching films, most importantly, if you have the opportunity and you know, people from different cultures, make them aware that you who have an interest in aspects of their culture. If you don't understand something, explain that you don't understand. And could it be explained to you? If you feel you've offended somebody there's usually an opportunity to say I didn't understand that or could you explain it? There are so many opportunities to learn about different cultures or through the internet, through, as I said, through books or through going to the theater, there's the arts. And actually, there are opportunities for some songs when somebody dies, somebody well known dies, for example, there is a beautiful, beautiful Indian singer who's just died. And I've got quite a lot of her music on and there there've been some wonderful, wonderful obituaries about her. And I've just learnt more about her culture. I mean, that's the way to do it. And also we can't know everything we can't. I'm not scared of getting it wrong, I'm prepared to apologize. Let's say, I didn't know.

Chelsea: Absolutely. It's sometimes when we get it wrong, it's how we learn how to get it right, in a way. So a few years prior to your trip to Nigeria, you decided to go to nursing school. Did you always know it was what you wanted?

Elizabeth: Yes, from that nun treating my eczema so well. I never wanted to do anything else. There were teachers who thought that I could go to university because at that time, nursing in this country, wasn't generally studied at university. I mean, it is now you, you went to a school of nursing, which was attached to a hospital. There were a couple of universities where you could get a degree in nursing, but the vast majority of in that era and I trained in the sixties, we did it out with of the universities. There were teachers who said, you are bright enough to go to university and you know, you could study this or study that. And I'm a very polite person. I said, oh yes, okay. But I knew inside me, I want to be a nurse.

In fact, you see, they would be happy now because not only did I fulfill my nursing career the way I wanted to, so I went through the traditional route of nursing, as I've said at a school of nursing, then I did health visiting and then I specialized as a sickle cell specialist nurse. And then, because I wanted to originally work in Nigeria, but my father advised me to try and come at a more senior level than as a Health Visitor. That's why I studied for a degree to be quite honest, that was the original reason. But I ended up getting a doctorate. So even though I didn't go university until I was an adult, a very mature adult actually I ended up becoming a Professor of Nursing. So life is very, very odd at times, isn't it, you look back, you wouldn't have thought this is the way it would play out. And it did play that way.

Chelsea: In your book, you talk about the hierarchy and the bullies in your life and how this still exists. Today you also shared that you do talks with students of midwifery, helping those who are being bullied. Is this common and what advice do you have for anyone who might be dealing with a bully in their life?

Elizabeth: Well, if it's within, for example, the nursing profession or any work based situation, I think you should belong to a trade union and/or a professional association because you need an organization that's going to support you that is independent of the workplace. So it's worth paying dues to a trade union or a professional association, because it's a form of insurance against these situations. Many people will go through their career and not experience it but I still think they should have this type of insurance cover because you don’t know when it will happen. And it happens at the odd of times and regardless of who you are, I mean, some people are more prone to difficulties because of their gender, their ethnicity, their sexual orientation. We know that. So my advice would be make sure of an organization that you are a member of that if you ever are unfortunate enough to experiencing the horror of bullying, you go to that organization for support and also try and find allies in your workplace and friends who you can talk to, don't bottle it all up. We see the terrible mental health issues that can occur if you do bottle it up and it is important to, however difficult it is, try and share your issues with somebody and get advice.

Chelsea: Thank you, why do you feel people feel the need to exert power over others?

Elizabeth: I just think it is part of nature, I'm afraid. I think if you look at the animal kingdom, we are part of that animal kingdom. We like to call ourselves human beings, but there is this sort of desire for people to feel that they're superior to others and it's all around us. And that's when bullying can take place.

Chelsea: It's a pandemic of its own.

Elizabeth: Yes, you’re absolutely right and it's horrible.

Chelsea: Yes, absolutely. So how did you learn about sickle cell?

Elizabeth: Not in my nurse training. I can tell you it was when I became a health visitor that I first encountered a child in a family that I visited who had sickle cell anemia. This was the late 1970s and I got more involved with Black community issues and because I had a nursing background, I was interested in Black community health issues. And so therefore, very quickly, I realized that there's this illness that mainly affects the Black community, sickle cell anemia. And I was angry that I hadn't been taught anything about it.

I then went to a couple of lectures by Dr. Misha Brozovic, who sadly has just died. She died a couple of months ago so I'd like to pay tribute to her because I went to listen to her talk and she was such a wonderful educator. She really brought this subject to life and it's very complex at times, she was able to break down all the medical terminology and describe the physiology of the condition very clearly. And I asked a lot of questions after each of the two talks that I went to and she came rushing after me after the second one clear, you’re obviously very interested in this subject and we started talking and she was very worried about the lack of support provided to the families who were predominantly Black families. So she saw in me, a Black health worker who was interested in the subject and well to cut a long story short, I ended up working with Dr. Brozovic.

I'd been to visit the United States on holiday, but I also was interested then in sickle cell so I went to visit a few sickle cell centres and the National Sickle Cell Foundation in, in Los Angeles. And they were so helpful to me, gave me a lot of information and support. And that's when I discovered that there were sickle cell nurse specialists, I met them in Los Angeles and San Francisco and New York and Chicago and Minneapolis. And I thought, wow, this is what I'd like to do. So I spoke to Dr. Brozovic and I'd gone on a couple of short courses in America. The foundation had organized putting me on free of charge so that's how I became the first sickle cell nurse specialist in the United Kingdom in 1979.

Chelsea: Just incredible, truly, truly incredible. And for everyone listening, who might not know what sickle cell disease is, can you help us understand what sickle cell is?

Elizabeth: Yeah, certainly it's an inherited blood disorder that affects the hemoglobin, which is inside the red blood cells. And hemoglobin carries the oxygen within the red blood cells. And we all inherit, what's called a hemoglobin type, which for most people around the world is called AA. So hemoglobin A from one parent and hemoglobin A from the other, but there are other types of hemoglobin and one is sickle hemoglobin. And if you inherit sickle hemoglobin from each parent, you inherit sickle cell anemia, the illness. Now the parents usually don't have the illness, they’re, what's called silent carriers of the condition. And we would say they have sickle cell trait, or they are a carrier of sickle cell. And every time they have a child, there's a 25% chance that each of their children could be born with the illness. One in four chance.

Every time they have a child. Now the child doesn't normally present with the problems until after the age of six months. And then it could be the symptoms include anemia, could be tired, vulnerability to infections such as pneumonia, a sort of clotting because the cell sickle a sickle, like a half moon or an arm shape and that's the way the round red blood cells can change in somebody with sickle cell anemia. The problem is not only that these cells are awkward shapes, they can form sort of clots. They can clump together, and this can cause severe pain in whichever part that sickling occurs, we call it sickling, and it can cause organ damage in that part of the body that it happens so children, for example, young children can have strokes because of sickling in the brain.

They might have problems in their hips, their shoulders. They're very prone to chest problems, infections, which can be fatal. There's a variety of problems based on the susceptibility to infections or the sickling in various parts of the body. And so historically when I first involved, the life expectation was around 30 or something years, but now you see people living into their seventies and eighties even. It still can cause early death, but it's less and less likely now if that individual is managed within a comprehensive sickle cell centre provider service.

Chelsea: And from what I understand, sickle cell isn't only under-diagnosed, but during a sickle cell crisis, which can be extremely painful, patients are often treated with skepticism when they go to the emergency room and many medical staff even assume maybe it's attention seeking or drug seeking. What is your opinion on that? And do you think race plays a role in that?

Elizabeth: Race does play a role in this because sickle cell anemia originated in parts of the world where you find a certain type of malaria. We're talking about parts of Africa, the Mediterranean countries, also the Middle East, but you know, significant number of countries in Africa, there's a high prevalence of this condition. Countries like Nigerian, Ghana for example, and in Britain, it's predominantly Black people who have the condition and you then take on race. You take on severe pain which requires opiates. When we're talking about morphine, you see a young Black male as an example, writhing with pain in the accident in emergency department, demanding morphine. And they know the exact dose, of course they know the exact dose they've been born with this illness. They've grown up with this illness, they know more about this illness than the most of their health workers do, except the specialists.

So they know they know what they need to get this awful pain reduced. Now you get a nurse or a doctor who doesn't know much about sickle cell, if anything, who has racist attitudes, who has attitudes about any patient that, you know, patients shouldn't know more than they know whether Black or white. You get a health provider like that, God help you, right? Because they won't believe you. Now, you know there's so much effort being made to just educate health professionals. And we need a lot more because the resources haven't been put into this properly, and it's taken sadly, I’m talking about the English experience, deaths of individuals with sickle cell disease that could have been avoided if the health professionals, first of all, knew about the condition and B, had more empathy towards the patients. And we're still seeing examples of these deaths and it takes scandals to bring it to the four yet again. And it still not, it's still not sorted out.

Chelsea: Why do you think that people in the NHS and globally, why do you think they don't see sickle cell as a significant public health issue?

Elizabeth: Well, I think it's racism, I think it's ignorance. I think it's a lack of resources at a national level put into a condition like sickle cell disease, because you have to take a national lead with this because we have pockets of excellent practice, but you can't expect those practitioners working every hour on these ends to be going around the country, teaching everybody else. No, that's not the way it works. If you have a condition such as heart attacks, well you'd expect every medical student and nursing student to be taught about it. You expect that and it should be in the curriculum. So too should they be being taught about sickle cell disease and it's seen as a minority condition. Oh, you know, so when the curriculum is developed, unless there are people around that table who know about sickle cell disease, have an interest in sickle cell disease, it's not going to be included in the curriculum. It's not mandated. It's not, nobody has to teach about this condition now that's where it's wrong because why should you be leaving it to somebody? Of course, you're not going to get universal education about this within nursing schools, the way we have it at the moment.

Chelsea: Right, I'm sure you're tired of this question, but what can we do to change this? What can we do with people?

Elizabeth: Well, first of all, there has to be an awareness about it. So I think the media, podcasts such as your own. You can't know something about something you don't know about, you know, whatever it's, you know, you don't know what you don't know. So the people who do know and the platforms that could disseminate this information, they're the two groups I think that have a lot of responsibility as do the politicians, because it's been brought to their notice. They can actually, they have the authority, the clout, the power, to link in with national health service, the most senior people and give directives and provide resources to ensure from a national level, adequate information and services are resourced. And also that there's accountability. So that those health services, where complaints are made about inadequate or no provision of services, that those complaints are dealt with appropriately.

And that the user's voice, those individuals who have the condition and our organizations such as the Sickle Cell Society in the United Kingdom of which I am a patron, they need to be listened to and supported and resourced because they act as the lobbyist, they act as the champion for many patients, but they are often not resourced properly. And the areas that are resourced that don't take any interest in it. You know, it’s not on an equal footing and that's why the politicians can play part to recognize this and to allocate resources or to ensure that resources are allocated because this is health inequalities and where you have health inequality, you need a powerful organization saying this isn't acceptable. Trying to take resources and give them to this area. Even if it means taking it from someone else that is over resourced then so be it.

Chelsea: Absolutely. Elizabeth, what inspired you out of retirement and back to work?

Elizabeth: Well, I haven't gone back to work, I did retire. I mean I retired but I've always been involved with the voluntary as I say, Sickle Cell Society was one of the key charities that I help to set up way back in 1979. And so, you know, now I'm a patron. I don't actually see it as work. I mean, listen, I'm sitting here, you could call this work if you like, but it keeps me occupied. Doesn't it? Come on.

Chelsea: Yes, I know you've been quite involved since COVID 19 broke out.

Elizabeth: It is actually only through my established network works, I get asked to give a lot of talks about my life and about my career. And then we get into a discussion. What people ask me a lot is how can I advise them in dealing with issue A or issue B? And because, I am retired, I’m not employed by anybody, I don't have to be worried about what I say. I can speak freely and confidently give advise, if I can give advice or sign post individuals or organizations so that they can get hold of the information and the support. I do like teaching, I do like being involved in discussions on areas that I am knowledgeable about. I do say no to a lot of things, because I'm not knowledgeable about them and I'm choosy about what I do to get involved in.

Chelsea: Well, we were happy you said yes to this. What do you want our listeners to know about sickle cell and COVID-19 and how maybe COVID-19 has particularly had a devastated effect on Black and Asian communities.

Elizabeth: Do I take sickle cell and COVID 19 for start COVID-19 has caused deaths of individuals with sickle cell disease as it's caused deaths of so many people who didn't even have any illnesses, but those who have longer own conditions, as we call them, such a sickle cell disease are particularly vulnerable. We certainly saw that Black and minority ethnic communities were particularly severely affected to the extent of deaths when we saw the first pictures of those first 60 or 70 people that died in Britain, predominantly Black and Asian individuals. So that was staggering, to see that and a lot of the reasons were that they were frontline workers. And if you look at the staffing within the national health service, it's been very, very dependent on Black and minority ethnic health work individuals.

So it's not surprising then that frontline workers, as we call them, they are those people at the bedside, caring for people at the bedside. They are the people within the accident and emergency units where people present initially a significant number of family doctors are from that background. So they're what we call front facing individuals so they were exposed to the virus in a huge viral load, in a way, because they have this disease. And initially there was very inadequate personal protective equipment distributed to frontline workers so that was a double whammy.

Chelsea: Absolutely. Well, thank you, and to end our conversation, I would love to talk about your Dame hood. You have so many amazing elements to your life and it was just amazing listening and reading your book. But to have accomplished, and you talk about this in your book, the accomplishment and how your family those who are alive and who are passed, you know, would be and are proud. What did that moment feel like for you?

Elizabeth: Well, first of all, it was a huge shock. Yeah, to get the letter offering me the day.

Chelsea: Maybe you're thinking, is this real?

Elizabeth: Oh, listen, I read the letter three times. I was in the hall, I live on my own and when I opened it, I really couldn't believe it. I just, I read it. I just read it three times because I thought, this can't be true. You're not supposed to discuss it with too many people, but hey-ho, come on. I rang a relative and a friend. Yes, it was a huge shock, but it a pleasant shock.

Chelsea: Oh wow, absolutely. I'd say so. Elizabeth, my final question is what do you want people to take from your book? Your mother's story is heartbreaking, but it's resilient. What do you want people to take away from your book?

Elizabeth: I want them to learn about the life if of a 74 year old mixed-race woman born in England in 1947 and follow her experience and the social and political and the context of her life, because lives such as mine, we don't read many narratives like that. I think there are more now, but there still aren't very many. And so to read about a life that you would not necessarily have ever met anybody or listened to known about the sort of experiences that individual both positive and negative has had in today’s society.

Chelsea: Absolutely and that is exactly what people are going to get when reading it, such an amazing story. And thank you so much again for joining The Millie Podcast and lending your story to this podcast. Thank you so much.

Elizabeth: Oh, thank you so much for inviting me this huge honour. And it's been a lovely session, very relaxed.

Chelsea: Aw, thanks, Elizabeth. Thank you for joining me for this conversation with Dame Elizabeth Anionwu. Join us next time for a special panel episode to celebrate International Women's Day. If you enjoy listening to this podcast, please hit subscribe, share with your friends and visit us at millie.ca.

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