Care Advocacy Unity Support & Empathy - Samantha, Sickle Cell CAUSE

I learned so much during my conversation with Samantha for this episode. You know how certain causes just really move you, this is one of them. I remember years ago hearing about the Horizon scandal and feeling incensed - I fear it will take a few more years as well until we have a reckoning about the treatment of sickle cell patients over the last four decades. I am so grateful that Samantha took the time to tell us about some of the struggles that are still ongoing. 

Eventbrite: https://www.eventbrite.co.uk/e/comeunity-open-day-tickets-880688150967?fbclid=IwAR0qFCc9nodHm9fItVmjY9NHMTOCt2qLQmqurUOLSDogwZLtsZlT5CXwnzs
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Website: https://www.sicklecellcause.com/
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Transcript

Jamila  0:10  
Hi, I'm Jamila. And anybody, everybody Tottenham is a monthly podcast introducing the good people of Tottenham to you. Hello, everyone. Welcome to the April edition, and today I have Samantha from the sickle cell cause, and I feel like it's quite an emotional episode. You know, it's not an easy one, because we really talk about a lot of injustices that the sickle cell community have faced over the last 30/40, years that they've been active here in Haringey, and I think it's important, and I'm also very grateful how open Samantha was about her personal story and the experiences she had within her family, etc. So I think that is important to hear - if you don't listen right now, I just want to point out that there is an open day on Saturday, the 20th April, and they are very keen of having the community come in, connect, etc. So make sure you are there! On today's episode of the pod. I've got Samantha from the sickle cell cause. Thank you for joining us today.

Samantha  1:20  
It is my absolute honor to be a part of this. So thank you for inviting me, Jamila,

Jamila  1:27  
that's nice. Okay, Samantha for starting off - What is your connection to Tottenham?

Speaker 1  1:33  
Okay, so my connection to Tottenham began in 1979 Yeah. So I was born in South London, in Tooting, and that's where I grew up, but my parents split up, and in 1979 I moved to North London to live with my mom, and because I've got sickle cell, I had to be under a hospital. And at the time we was -  I was put under doctor George Marsh. He was my consultant for sickle cell, and he was working from the Prince of Wales Hospital in Tottenham. So that was my first connection to Tottenham before they moved everything over. You know, the hematology department to the north Middlesex Hospital. But then, as an adult, my first address, the first address that I had under my name as an adult was in Poynton Road in Tottenham N17 that's where I brought my daughter up, you know, until she was six years old, and then I moved to Wood Green, you know. So I'm very haringeyish, yeah,

Jamila  2:35  
yeah. And can you tell us about the Centr e?

Speaker 1  2:40  
I moved to North London to live with my mum at the age of 12. This was in 1979 my mom was living in a one bedroom flat, and obviously she had to get a bigger home, council house, and they rehoused her to a three bedroom but it was moldy. It wasn't centrally heated. There was mice. It just wasn't suitable. It was drafty, you know, and she put in cheap she originally, she took the place, you know, because she needed the space. But living there soon after, you know, the the issues was tremendous. Me having sickle cell, my younger sister with sickle cell, and my brother, who's a year older than me, he has the sickle cell trait, but he suffered greatly with asthma, so the housing conditions was very detrimental to all of us. And my mom used to be at the housing office weekly pleading for them to remove and they just wasn't hearing and one time a man, a gentleman, came up to her, who was nothing to do with the house. And we was in the housing office, and he saw my mom in distress. Then he came over, introduced himself. His name was Neville Claire um. He said that he was a sickle cell patient, but he was also the founder of a sickle cell support group, okay? And he heard what my mom was saying, and he told her to, he gave her his number, and, you know, said to contact him to see what he can do. And it was within a month we had a new address. (Oh, nice.) You know, after Neville Claire became involved. uh Neville, he was the founder of it was called um Haringey sickle cell support group at the time. But originally he had founded in 1974 and officially opened in 75 was Oscar, the organization of sickle cell anemia research, and it was the first research and sickle cell support group in Europe. (Wow,) yeah, and he founded it, and, you know, used to host his meetings in his workplace after closing hours in a shop in Wood Green. And one day we was all, you know, because by this time, now, I'm bit older now, and I used to attend his meetings having, you know, met him, he is now my mom's friend. He's a family friend. And so one evening, we was huddled out. Outside this place of work because the person with the keys hadn't arrived yet and it was raining. It was like coming down hard. So there's a group of us, around 15 of us, huddled underneath umbrellas on Wood Green high road, waiting for the person with the key to come and open the shop door so we can have our meeting. But who should drive down but doctor George Marsh, and driving down, he seen a bunch of his, you know, sickle cell patients outside in the pouring rain. Now, rain and cold is something that triggers a sickle cell crisis, so he was kind of angry. He stopped his car and asking us, you know, what we do in, you know, out here in the rain and stuff. So we explained that we were about to have a one of our monthly support group meetings. He didn't know anything about and we invited him to come. So he parked up his car, and he joined us for that meeting. And by him joining us for that meeting, he made the decision that we as sickle cell patients needed a space to do what it is that we do. And he campaigned with his his peers, his medical professionals, with the NHS and we ourselves helped done like pushing a bed down Wood Green High Street, doing you know, for sponsorship, sponsored walks, dinner and dances to raise money for this space. And then, and that was like round about 1983 right when all of this was taking place. And then in 1987 the building was finally built and officially opened in 1989 but sadly, doctor George Marsh died before the actual center was officially opened, so he didn't see it in, you know, in its fruition, and in the center it, you know, we served everything was done there, like for children and adults, you know, for education, educating student, medical staff, schools and parents and everybody used to come to learn about what sickle cell is. And it was like a place where they done screening, everything to do with sickle cell, counseling and welfare children's activities. 

Jamila  7:02  
You know, was it already in Saint Anne's at that time? 

Speaker 1  7:06  
Yeah, so it was open, so this is where it was. So it was opened in the grounds of St Anne's hospital. Now it was going to be called like the sickle cell and Thalassemia center, or it would have been or another one was the hematology center. But because Doctor Marsh passed, the decision was made to name the center in his honor. So that is why it's called the George Marsh center. So we've had the center since 1987 when it was built, and it's, you know, served the sickle cell and Thalassemia community - mainly sickle cell, because the Thalassemia community already have a center that they have in their community.

Jamila  7:45  
What's the difference? Just to give us, maybe some basics about

Speaker 1  7:50  
Thalassemia is also a blood disorder, so you will find that sickle cell patients and Thalassemia patients share the same spaces, the same doctors and that. But whereas sickle cell is mainly associated with people of color, like the African Caribbean Community. Thalassemia is more in the like Turkish Cypriot Greek communities. So it's similar, but it's not exactly the same, and then how it affects the bone structure, like Thalassemia affects bone structure.

Jamila  8:20  
So what has been the kind of trajectory of the center since it was opened? So it's because that's all almost, yeah, it's over 30 years. How, how has it been? Has it been all a smooth ride? I don't think so. Probably.

Speaker 1  8:36  
It was very active throughout the late 80s, throughout the 90s, but then from the mid 2000s they've been trying to take it from the sickle cell community. Now this George Marsh center was the first purposely built sickle cell center in Europe. Purpose for sickle cell and Thalassemia patients. Other spaces opened up throughout the years, but they closed down because of funding and so forth. But this one was always standing because it was purposely built. However, they kept trying to take it from us. And, you know, it was always a battle from like the mid 2000s but in 2015 they really did go, you know, and they actually took it from us. They said that, you know, they're giving it. They took us out, they asked us  to leave, made the staff leave because, remember the building, although it was purposely built for the sickle cell and Thalassemia community, it is a NHS building, so it's owned by the NHS. So even though it was purposely built for us, and we've helped fundraise for it to be standing, it does belong to the NHS, and they decided that they were going to give it to a different health organization, so we had to campaign. So led the campaign, and that started in 2015 and we got, like, over 100,000 signatures. (Excellent.) There was a big uproar. We did sponsored walks, you know, we let the community know. Radio shows, everything. And we finally won back our center. It took five years we officially learned that we had won it back in January 2020, but then what happened - COVID, you know,

Jamila  10:15  
and and you, you would have been very vulnerable during that time as well, wouldn't you,

Speaker 1  10:20  
Definitely, and I'll tell you, one of the reasons is because, the reason, one of the reasons why they said that we didn't need our center. They were saying that it was underused, that we wasn't using it. Now, this is the only sickle cell center in the whole of the UK, and they were saying that it wasn't used, you know, and they and with sickle cell, they say that it is not a disability. Every individual sickle cell patient has to fight as an individual. Now, if I said that I've got multiple sclerosis or something, something's in place, you know, to Oh, right, you've got MS,

Jamila  10:52  
exactly. No, no, I I said this the other day to my friends, after I spoke to you, I said, like, I realized, because I've got MS, you know, there is a hierarchy of disabilities, and that the mobility disabilities and the ones that are more common are definitely higher up, because straight away, people understand. They've heard of it. They kind of know, and especially if you're physically disabled, people make adjustments. You know, if and you guys are the the worst of it isn't it, your numbers aren't that high, and it's partly an invisible illness. So people are not taking it seriously.

Speaker 1  11:29  
Yeah, yeah. And so they decided that, you know, we told because of the the numbers they you know. So they said that, you know, we didn't need the center, but we fought. But like having said all of that, that's the reason why they took the center. But then when they started rolling out the the vaccination so they used the George Marsh center as a vaccination center. Okay? When they started rolling out the vaccinations with the elderly, sickle cell patients were at the top of the list to be vaccinated, yeah. Whereas months, just a month before, we won that, you know, sickle cell is not a disability. Now we're highly vulnerable.

Jamila  12:08  
What did you do in those five years that you didn't have a center? How did you cope during that time?

Speaker 1  12:14  
Very much, got accustomed to the zoom. We used Skype before the zoom. We didn't physically move out everything. We hung on by, you know, a thread, and we used a center. We had to book space in the center, okay? You know, we had to book to use a room to do activities, and most of them took place at the weekend. The staff felt sorry for us. It's our center, and we're having so we couldn't use it during the day because the other organization was using our space. 

Jamila  12:39  
How have you found it since COVID, because I've read on the MS Society report, it's not back to the same level of engagement. How is it going for you?

Speaker 1  12:50  
Now, we've only started back after the COVID, and we had many deaths, many, many deaths. And although the money that we had raised, you know, a lot of it went into helping to bury people's, you know, funeral expenses and stuff. So we're only now starting to get our services back. Okay, after the COVID, they refurbished the center. So the center is nicely, newly refurbished, but we still don't have our staff in the place yet, so it's only the support group using the center at the moment, but it's a lovely space. Only issue is parking, because they've taken away our disabled parking bays. So there's an issue with the parking which we're trying to address now. But having said all of this, my point of view is one minute where we're not a disability, next minute we're highly vulnerable. You know, they have to make up their mind, but it's like the figures of sickle cell, why people can say like, like, as you said, there's not many people with it, you know, in comparison to other illnesses now sickle cell, how it affects you, like me, having sickle cell is a guarantee that I'm going to have other issues, other conditions, right? Because it's a blood condition, it affects every part of the body. So one sickle cell patient is more likely to have about another 20 conditions or illnesses manifest because of having sickle cell.

Jamila  14:15  
Okay? Like, what? What kind of conditions are quite common,

Samantha  14:19  
yeah, like, stroke pneumonia,

Jamila  14:24  
yeah, because I was going to ask you, like, how does it manifest? I keep on hearing, there's a lot of pain involved, especially when, when there is this sickle cell crisis, and is there something with the lungs? Because you say, with the pneumonia and asthma and stuff, you know. 

Speaker 1  14:39  
So, like, we have, like, um, abnormal cells, so we don't get as much oxygen. So the adult, the average adult sickle cell patient, lives with daily full body pain every day. It's like the degree of pain. And because we're so used to living with pain, it looks like we don't have pain, but it's like, you learn to manage it, we have bouts of life threatening sickle cell crisis that can happen at any time for any reason or no reason at all. Many have um eating disorders. You know, huge eating disorders. (How come?) Because, um, you have problems with the stomach, okay? You know a lot of IBS. So there's also, like, a prescription drug dependency. And I'm not saying I'm not saying addict, I'm saying dependency, because, you know, your body gets accustomed to needing the medications. Trauma, I'm just like listing off some of the the daily things, trauma, anxiety, there's always anxiety, memory, failure, and the anxiety can stem from like, being a child, I was told that I wouldn't live past 14 - 21, years at the most, and many of my peers of my age, we could, we all like, compare how long did they say you was going to live to? how long? did you know? So you live thinking that you're going to die, so you don't have a high expectation of what life is, memory failure, teeth and hair loss, ulcers on the in the stomach, on the legs that don't heal, swollen joints, migraine, hearing and vision impairment and loss, depression and many have a morbid fear of impending death. And a sickle cell crisis can last for just a few minutes to several months at any given time, although on average, it's like five to 14 days. My issue is we've, we've been coming back to the figures talking about not many people have sickle cell, like, for instance, if I was to pass away, right? I can pass away from like, a stroke, for instance, yeah, right. And on my death certificate, it will say that I died of a stroke, but it's not saying due to sickle cell. Yeah, somebody can die from pneumonia, but it's not saying on the death certificate due to sickle cell. Now, if on the death certificates all of these sickle deaths had sickle cell on them, then the numbers that we see promoted like 15,000 sickle cell patients in the UK, you will realize that is more than double that, okay, yeah, because the official numbers are not really representing the facts. There's like, jaundice, iron overload because of the amount of antibiotics that people have to take and iron you know, migraines, gall stones, breathing, neck difficulties, the spleen, the swollen and the removal of the spleen reduced bone density, chest infection. We have a weakened immune system, cartilage degeneration. Many of us have joint replacements with whether it's the hip shoulders, organ failure, slow or sudden death. But people don't know this, because if you see me on the street, you'll say, Oh, you don't look like you've got sickle cell. We hear this so often. But the thing is, when I'm in crisis, you wouldn't see me. The only times you would see me is on a day that I'm well enough to be out.

Jamila  17:54  
But you know, Samantha, what I think as well, is, there is this problem of you know, in general, in the health system, of underestimating black pain, isn't it? (Yeah,) that's, black patients are just not their pain isn't taken as seriously. So again, you know, you just have this, this collection of disadvantages on your side.

Samantha  18:17  
And I'm glad you mentioned that, because a lot of them say that black people have a higher pain threshold, (yeah, yeah, yeah.) And, you know, so you can have a strapping, great big, you know, tall, six foot, you know, black man that's got sickle cell. But when that sickle cell pain hit, it, (could) scream and cry like a baby. Is a horrendous pain, you know. But they will say that you can hold it. You're you know, be a man, be strong. You know this pain, like people have said, women have described it - they rather have three day labor pain, yeah, rather than, rather than one day of sickle cell crisis. 

Jamila  18:53  
So you said it was quite new. So is, was sickle cell not really discovered in quotation marks until the 70s or something?  

Samantha  19:05  
 When you had the influx, you know, the Windrush generation, (okay, okay), when a lot of people came from Africa and the Caribbean, you know India, you know they call it the Commonwealth came up to the mother countries. So obviously, that is when it's more recognized. But sickle cell was, um, was known like in the medical field, like from I think it was like 1901, (okay), no, that that medical just like it was written about in medical journals around about that time. But most of the doctors that I saw growing up as a teenager, every time I saw a doctor, I was the first case that they came across. My generation. We were guinea pigs. Try this drug, try that drug, Do this, do that, and all of the symptoms and, you know, side effects that go with it. You know, many different drugs are put through our bodies. And a lot of the times we found out later on that a lot of these drugs are being tested on us, but for different illnesses like cancer, we our bodies have been used for drug testing. And even, like recently, we found a new drug CRISPR. They call it

Jamila  20:12  
Yeah, yeah. I was going to ask about that, yeah, because that is the latest fight, isn't it? 

Samantha  20:17  
Yes, you know. And they started using it on sickle cell patients, and they found that it is working. So finally, after decades and decades of research, they found something that is helpful. And some people, have you know, used it and have been cured or it was working for them, and then they decided they're going to no longer have it because it's not cost effective for the NHS. That's the reason. And again, the reason is because sickle cell doesn't affect enough people, but where are they getting their figures from? And that comes down to death certificates.

Jamila  20:53  
Yeah, well, I saw something about the trait and that people should get tested before they get into relationships and stuff. Yeah. How do you feel about this?

Samantha  21:01  
Well, for sure, we do promote that yeah, and advertise that people get tested, just so that you have the facts. Because statistically, two people with the trait, you know, have a child, there's a one in four chance in every pregnancy that your child will have the full blown sickle cell condition. Two people with the trait, like my parents, both of them carried -  they didn't have the full blown - with every pregnancy, there's a one in four chance that your child will come out with a full blown sickle cell and a degree of severity we wouldn't know until the child is born, and as they grow, that's when you learn how badly it affects because there's many types of sickle cell. In fact, there's over 100 types of sickle cell. Oh, no, that's another thing people don't know. I mean, there's about seven that are the most common. Okay, it's over 100 types of the sickle cell disorder. Like one of the reasons why we really do campaign for people to come and be tested. Now you can go to GP or come to the George Marsh center, but it's a simple blood test, and that will tell you whether you carry the sickle cell gene. But by having the trait, you do have some sickled cells. Some people feel pain, but the degree of pain is more manageable than those that have the full blown. 

so it was just bad luck that both your parents carry the trait? (yeah) So, yeah, nobody in their family. Okay. And then, did you say your brother is the oldest? So the first child, he didn't have that, yeah? So they didn't realize after the first child, yeah,

yeah. Um, how the how my family knew about sickle cell is me and my brother were playing. We had a, you know, childhood accident. Taken to hospital, I wouldn't heal. And then that's when they discovered that I had sickle cell. My parents didn't know what sickle cell was. This is like in 1969 /70s, you know, around about that time, my sister, who is older, four years older, she has the trait, and then my brother, he has the trait. And then my younger sister, who's six years younger than me, she has the full blown as well. I have sickle cell SC and she has sickle cell SS,

Jamila  23:12  
Is there like routine testing nowadays? Would would parents be quite early on aware that their child has sickle cell or not? 

Samantha  23:20  
Yes, we campaigned in the 80s and the late 80s, early 90s, it became like mandatory that the child at birth is tested. But the thing is, this is not going to happen. Like, if somebody's name is Paul Smith or Sarah Smith, you might fall through the net. If you have a more African sounding name, it's more likely that they will call you to be tested. So we really would like every child to be, every child to be tested, because sickle cell, although is predominantly in black communities, sickle cell has nothing to do with the melanin content of the skin. It is a blood disorder. So you can have blonde hair and blue eyes and have full blown sickle cell.

Jamila  24:04  
Can I ask something personal again? Do you remember when you first got diagnosed, how that was for you and the family dynamics, because you said they told you back then, I don't know. Did they tell you straight away to your face or, you know, you won't live that long. What What was it like? 

Samantha  24:25  
I was four. It wasn't on the first, like, the first time I went into hospital, when I had the accident, you know, I was knocked out so, but now they've discovered that I've got sickle cell, and every so often I'm having sickle cell crisis, I was going into hospital, and I'm a prodigy. And every time I go into hospital, I've got a good like 15/16, doctors around my bed, prodding, poking, you know, you know, everybody wants to feel and the spleen as well and this and that, and that was like many of us of my generation. And remember, like we're talking about the, you know, late 60s, early 70s, whereas laws that are in place now, you. Really wasn't then So, and we're talking about pain threshold and things like that. There wasn't a care. We were real guinea pig. And, you know, there for science. And  I remember them talking, I was like in and out of sleep, and I read, there wasn't around my bed. Um, I think I was about six. And I remember them saying, Yes, I agree. 14 years 15, maybe someone said 21 at most. And that stuck with me, and that had an adverse effect on my childhood. You know, when I reached 14, it had an effect I lived a very cavalier teenage years, because to me, it can happen at any time. So what's the point (mm) of anything so living with the condition, and put this in your mind. So this is one thing why we really do promote that sickle cell patients have counseling, even if you don't think you need it. Have it because it can bring out so much things that you're holding in to that. Because I used to think I'm not talking to no stranger about my business and all that, but when I started the counseling process, that's when I started to truly heal, 

Jamila  26:06  
okay, okay. And how was it for your parents? Because I feel like, even when I got diagnosed, I think there is, like some guilt, even though, you know it's it's not their fault, but somehow there is, was your mom then very overprotective, or? 

Samantha  26:22  
very much. So at first it was like a argument, like, and this is very common, like, cause remember it's a new thing. They don't know anything about it. And I remember my dad saying it come from your side of the family to my mum, because he could not admit that there's any. Because our side of the family lived into their hundreds. They live long. My dad's hitting 90 now, and he's, he's fitter than me, so he couldn't believe that it was something coming from his side of the family. So that caused arguments. And my mom, I know my mom felt guilty that she'd passed this, this thing on. I mean, my dad's more clued up now, of course. But I mean, at the time growing up, that it did cause arguments, they learned, they realized, because they did the work to find out what sickle cell is, and my mum was very protective, especially over my younger sister, who seemed to suffer. She suffered from it worse than I did. She was always in and out of hospital, whereas I was like more every six weeks or so she, you know, she took a lot of time off school.

Jamila  27:19  
So certain things seem to have improved, like there is more awareness and also just more regulations. In the sense that you, you guys are not guinea pigs anymore. What are your current things that you are advocating for? So you mentioned the testing, there seems to be this whole question about being recognized as a disability? Maybe, 

Samantha  27:42  
yes, we would like sickle cell to be recognized as a disability across the board, like any other life taking excruciatingly painful disorder. I didn't say that they stopped treating us as guinea pigs. I still believe to this day, that's the reason why CRISPR is no longer being used. They, you know, they discovered its worth so another health community will get that all, the very rich who can afford it. But we was used for it. Now that they know what it can do, we're not worthy of it anymore. That is my opinion. So to me, we're still used as guinea pigs, still with a little ray of light and then it's taken away. So I do believe that if the figures were represented honestly, then there could be no denial. 

Jamila  28:28  
So is that another thing then that you would like on the death certificates of people who have sickle cell, for that to be put down as well, to kind of get a proper record?

Samantha  28:39  
Yes, yeah, because it's like me dying of stroke. I had the stroke because of sickle cell. People die of brain bleeds, aneurysms, swollen brains just because of sickle cell. They had because of sickle cell on the death certificate, the figures would be a lot higher. Sickle cell is known to be the fastest growing, the largest and fastest growing blood disorder worldwide. So if that is a fact, and that's everywhere you read about sickle cell, that is said, Why are we so underrepresented?

Jamila  29:10  
Okay, and let's talk about your upcoming events. So that's going to be on the 20th 

Samantha  29:17  
Yeah, yes. People can get the link from Eventbrite. So every year we have our new season, because our season closes from October. So we don't have many activities like November, December, January and February, because it's too cold. We can't manage the cold, so we usually start, you know, again, from March. It was a bit chilly this March, so our date for our new season of activities begin on the 20th our open days, the 20th of April. And it starts from 10am and it begins with Kemetic Yoga. So on the link people can tick if they want to, you know, do the Kemetic yoga. Then at 11 o'clock, that's when we officially open, and we start doing our introductions. And explaining what's new, what's going on, how to become a member, or how to support the cause. We've got a lot of new gifts, and, you know, devices, therapeutic devices that we would like people to come and, you know, come to the center and use there. And we've got our workshops. So we've got after we've got the Kemetic yoga to begin with, and then we've got careers coaching and confidence building workshop, which is very important, especially for our teenagers and our young going, you know, into the stages of career, and also, like a lot of people with sickle cell, really do lack confidence. So we have, like, confidence coaching. We have our therapeutic beading and jewelry making workshop, we make our own jewelry using, you know, natural stones, or, you know, beads. And this is very therapeutic, and then you come away with your own creation. And throughout the day, there will be like, hand and foot massages, you know, because, you know, yeah, to help the joints and so forth, and our counselor will come and say a few words. People can book themselves in for counseling sessions. It's open for sickle cell and the whole community, everybody's welcome. The only thing that we ask is that people register so we know the numbers. It's ground level. The only issue that we have is parking okay. We do say to people, if possible, take transport, because the 67 bus takes you exactly right outside the door. 

Jamila  31:29  
So you know, like when you describe some of the events that are going to happen. So what is usually happening during the week at the center, is there the counseling? How is see, there's one of the days of the week. Or how is this structured? 

Samantha  31:44  
The counseling sessions, you book those, and they can be like from Wednesday, Thursday, Friday and Saturday. Okay, so people book their time. You know, there's a register to book for your counseling sessions. Every Monday, the hand and foot massages are there. People sometimes want, like, pedicures and manicures and that as well, if you that's the what happens on a Monday. Now, the place is open all the time. We have a library there. There's kitchen facilities, and if people want to host their own meetings in there to book, depending on what their meeting is about, of course, you know, okay, people can, you know, use the space also. There's on Tuesday, we have our book reading club, right? We're about to start reading as a group, an Oscar for my troubles, which is the autobiography of Doctor Neville Roy Claire. Now, remember I said, Neville, my mom met him in the housing office. He's a sickle cell patient, and he did his degree, got his doctorate. Now he was the person that founded the first sickle cell research and support organization in Europe, which just happened to be in Haringey. And because of him, Dr George Marsh had the center built. So we'll be reading his autobiography and talking about that. So we're starting that - that will be on.

Jamila  32:59  
What's the name of the book?

Samantha  33:00  
An Oscar for my troubles. Yeah, is, I think it was taken down. Sadly, he passed away in 2015 people can get the book through sickle cell cause, if you want to purchase the book, please let us know. You can email us at info@sicklecellcause.com, just request a copy to purchase a copy of the book. His wife still has copies. We'll be reading that together. That will be happening on a Tuesday. Also, as I said, we have our beading and jewelry workshops. Have Kemetic yoga, and we're going to start back with our nutrition classes. So yeah, so we were doing like, taster sessions. So on Saturday, you can from 11.30 after we've done our speeches, and you know the introductions and welcome the new season, people can go into the coaching workshop, the careers coaching and confidence building workshop, and then we'll be doing the  therapeutic beading and jewelry making workshop and and throughout that time, also you can go and get your Hand and Foot massage. You can also try our therapeutic devices, and we'll have like refreshments, you know. And you know, have a nice day. All right.

Jamila  34:10  
Did you prepare for the last section? Samantha, for the top tips? Tottenham, I know you moved away now, but maybe you still have some golden favorites. 

Samantha  34:21  
Definitely, for sure. Check out the George Marsh center in St Anne's hospital. You know, for your health needs to see. You know what is going on there. Please check us out. We're in Saint Anne's hospital, Saint Anne's Road, n15. Also now food. There is a a restaurant on seven sisters road. It's a small, little cafe restaurant. I have to mention it. It's called beans and cream,

Jamila  34:49  
okay, what kind of food?

Samantha  34:51  
right. It's a cafe. It's like normal Cafe food, but it's excellent. The prices are reasonable, but the service is excellent, and the food is excellent. Um, what else is there? Well, chestnuts Community Center is a great place to hire for your weddings, and have great facilities in chestnuts Community Center, and that's on St Ann's road also,

Jamila  35:16  
are there any places like relaxing that are maybe popular with the sickle cell community?

Samantha  35:22  
Well, that's the George Marsh center for the relaxing we've got such a space

Jamila  35:29  
parks? They always get a lot of love. Sometimes it's Tottenham Marshes. Sometimes, 

Samantha  35:35  
yes, Tottenham marshes. We did a sponsored walk last year through Tottenham marshes. It was, it was lovely just going through the like the forest walk. It was in the summer. It was, it's very nice. So I would say Tottenham marshes, but would also say for, like children, like, just for everyday Park needs sit on the grass. Chestnuts, chestnuts Park, it's a vast space. It has all the facilities there. It also has a little cafe in there. So, you know, the normal cafe, you know, reasonably priced. But when it comes to cafe, I'm sorry, but I'm beans and cream, you know, on seven sisters road for me. Okay,

Jamila  36:13  
so thank you very much for the interview. Samantha, I'm I'm looking forward to the event next week. 

Samantha  36:18  
Thank you so much, Jamila, it was an honor to be on your show.

Jamila  36:21  
So in the show notes, I will link the Eventbrite for Saturday's event, and I will also link in their Facebook and their Instagram and website, but just be aware that it's not being updated very frequently. And when I was talking to Samantha afterwards, they are also needing people to keep updating stuff their social media. So if you've got time and are willing to help out with that, that will be very much appreciated. On a personal note, I've been writing up a little bit of stuff that I've been doing in in the meantime and move my different disability projects, I wrote down two things that I've been working on over the last few months so just so you know what I'm doing, instead of interviewing people. Okay, so I hope everyone is ready for summer, because what was this crazy wind yesterday, I was not fond of that. Let's hope we've got sunshine, but not too hot, and we're all ready already for a little bit of light and happiness. All right, I speak to you soon. Bye. I hope you enjoyed today's episode, learned something new and let that Tottenham, love grow, take care and until next time bye. 

Transcribed by https://otter.ai