Keymn talks to Isaac about having been a carer for her mum for 23 years and the experience of trying to obtain information about her mum. Sadly, her mum passed away but Keymn does not believe she has been given full or accurate information about what happened because her mum could not communicate verbally and no family members could be present to advocate for her during COVID.

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.

 

These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experience are speaking on behalf of people they care for who do not communicate verbally.

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.

These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experience are speaking on behalf of people they care for who do not communicate verbally.

mhm. So first question is, can I get you to introduce yourself? Hi. My name's Kim Wevi. Um, I'm a mother to three Children

Um, and I was an unpaid carer. Um, for 23 years, up until the beginning of covid 2020. Thanks, Kim

So, Kim, what's important to you in your life and what's important to me in my life? What's important to me in my life is my family, my friends and com, um, communities and communities being able humans, people being able to look after each other, live in a safe space, develop and grow together and friendships really important to me. Thank you for sharing that. So what What impact did covid and the Covid pandemic and lockdowns have on you or your family? Ok, so, um, my mom, um, I started caring for my mum, Um, 23 years ago, she had a stroke and she couldn't speak, and she couldn't talk

So I had a debt direct payment, which supported my mum's care. Um, when covid came, my mum was one of the very first people to pass away from covid and all the things that I'd learned about personalised care. Um you know, being somebody we lived experience and developing co-production models, working with social care, working with health

So people have a voice that all fell apart. Um, on that day that my mum went into hospital and passed away. So I was pregnant, so I had a high

I was a high risk pregnancy. Not just because of my age, because I suffered from high premises as well. So I was in bed every day, Um, being, um throwing up and and what have you so I couldn't I didn't have access to my mom like I normally did, because I don't I didn't live with my mum anymore because she could live independently with carers

And, um, I felt like I was being pushed around by the nurses that were coming in because I wasn't there in control and they were forcing my mum to go into hospital. And I didn't want her to go into hospital and she didn't want to go into hospital. And they were speaking all jargon to me and because I wasn't 100% I was tired, and I I felt tired, and I literally feel responsible because of my own health

I feel responsible for not actually being there and knowing where my expertise lies for actually saving my mum because of her age, She wasn't listened to cos she couldn't speak, you know, they weren't listening to her. When she says she doesn't want to go into the hospital, she doesn't wanna go in. You know, they were literally forcing us to go in over a few days

And then I got so weak, Isaac, everything I know, I thought she was gonna be OK. And I just lost the fight. I don't know how and people looked down as soon as she went into hospital

Am I allowed to speak about this? Yeah, you're allowed to speak about anything. And when she went into hospital, because I know what I know. And because my mum was a black woman and I sound very young on the phone and and and we were spoken to

We were looked down on. It wasn't as if my mum's life I didn't know my mum's life was, um you know, nobody told me that she was near death and she went in. She went in the ambulance

She was sitting up. She was fine. Isaac

I know what my mum looks like because I've looked after her for 23 years. When she's sick, she lies down. You wouldn't be able to sit up and she was smiling when she went in the ambulance, she didn't come back out

We got a picture of her outside. The ambulance was the last picture that we took. We wouldn't normally take pictures like that as a family

So it's crazy that we've got that last picture. Um, from that point on, nobody's seen her. And I've seen my mom sicker than that

Mm. Um, and all all my expertise of keeping her alive and knowing what she needed. It was taken out of my hands, all the decisions, everything that I'd literally thought of to keep my mum alive

These strangers come along, these consultants, these doctors, and they speak to me with no respect. Mm. And then when they realise what you know, they push back even more

And I understand they're under pressure, and they were frightened. But you have to have a skill of how to deal with people in the community, especially when they don't know as much as you and I know you still have to comfort them and make them feel safe. Because my mum comes from an older black generation

She would listen to what they would say, Um, and they wouldn't communicate with us on the phone. We had my sister had to go outside the hospital and, um, try and communicate with them because they weren't answering the phones inside. Isaac, Um, and the kids say my mum's got had got covid

She got covid. And I was like, No, she suffers from this. You're You're just being paranoid

She suffers from chesty coughs every single year. You know, stop being frightened. I wasn't being listened to

I was saying, Have you give her this? Have you give her that? Has she eat and she's not eating. That's like Mum always eats. Sorry

Just ask me the right questions if I'm going off my, um I just so I wanted to go back. So when covid hit, what did you do as a family? Like, how did you or support your mum? What was going on? Ok, so, um, cos I had, um, a direct payment. So which was this is how a direct payment save has literally saved my life

So what? That direct payment paid for somebody to get paid for my mum's personal assistance That could deal with her and cook her the right food because of her culture. Take care of her skin and her hair and everything like that. Um, and because I was pregnant and, um, I had to go to hospital once a week

Anyway, that took the pressure off me having to go to my mum. And also I was frightened because of covid. I didn't want to pass anything on to my mum, and I didn't want to catch anything

Also because of covid. So I had all that going in my head, and I was visiting the hospital as well for myself and my pregnancy. Um, and I even had a massive, huge bleed

And I thought that I had a miscarriage. Um, I was outside at the shop, and but luckily, I hadn't. But that direct payment enabled me to make my mum feel safe and somebody to go and check in on my mum

So she wasn't on her own for my Children. They had to stop all their activities and they stopped going Well, at the beginning, they didn't really stop at when my mum passed away. And my experience, Um, that was later on

But I think me just being ill in myself, I wasn't really I couldn't really support my Children. It was all on my husband to do. He had to do it all because I was laid up in bed

But I was literally managing my mum's care from my bed. And how did you know what to do? Like how did, like, cos there's this covid that everyone's scared of. How did you know what to do with the P A s and all of that? Because my my P A s had been there for 10 years

They let and we had a lovely relationship. We developed a good relationship when we, um I let them do the work with my mum. So the lady, that's organisation dum care agency? Well, p a agency, whatever you wanna call it was like her daughter to my mum

So they had flexible ways of working and because I already had that in place that she automatically wouldn't bother me and would go in and do what she needed to do for my mum. So I knew my mum was safe. So it was a bit like I didn't have to worry

The only time I had to worry is when the the nurse community nurses would come in and try and make decisions, and they shouldn't really be making decisions. Would you want Do you think that it was right for those people, the community nurses to come in at that time for your family? Um, I think they needed to at that time, because my mum was on injections and my mum couldn't give herself injections. One of the, um, cos she had diabetes and one of the things I always wanted to do it

I've always said Let the p A s give my mum's injections so the nurses doesn't don't have to come in, but nobody ever listened to me about that. But when I was there with my mum, I they could train me to do it as a family member, but they wouldn't train a personal assistant that would see my mum more often than me. And they wouldn't delegate that task, um, to them to do it so they had to come in just for that reason, does it not seem a little bit bonkers? You've got nurses that are visiting lots of people, and covid is spread by people you know, they're coming into someone that potentially could be vulnerable

It it it doesn't seem like there was much thought around that there wasn't any thought about it. But to be honest with you, they were asking if any family members could come in and we were like, OK, we get it. But then again, everybody's also working, working as well as But our thing is, let the personal assistant do it because none of us are gonna go near my mom because we're outside

So let the personal assistant do it. And that's something that I've battled with for years that they wouldn't let our personal assistants give, um, injections. I would have even liked a personal health budget because my mum had a long term term condition

But it's not life threatening, you know, diabetes, whatever they wanna say. So if I could have picked up and had a health budget and put that integrated that into the direct payment, So that was a health task. Do you know how much that would have saved the nurses loads

They wouldn't have had to come in Isaac morning and afternoon. Um, so then you know you're organising you. You've got P

A s. You're being cautious. You're not too well

But how did so talk me through the your mum's journey with covid like, OK, so it was just all happened. Um, so she must have had a chesty cough one week. Um, so we normally know how to manage it, but because I was, um because I wasn't around, I it wasn't being managed

How I would normally manage it on a daily basis when she's not well, so I think she got worse. Um, what was the question? Sorry. Is it your mum's journey with covid? So you talk

So she she caught covid. The nurses were coming in the car. The the p a were coming in

She was having her food. And then all of a sudden, it's the the the the nurses were like at the Do you know what? At the time, I had a call saying, um d n r has your mum got AD n r. I didn't know what that meant at the time, Isaac, I didn't know

Oh, because D N r, what do you mean d n r? And she did. She shied away for it. She said, Don't worry, it doesn't matter

And this is the first time I'm saying this out loud because I haven't because my mum had a My mum was sick for 23 years, so she had a good relationship really with the com, and I didn't want to get them in trouble at the time. But now I look back, I should have pushed for it when the other nurse come in again in the afternoon. I said, What is that? She's told me what it what it was

And I was a bit like, but I didn't know what was going on in in the scenes with covid in the hospitals. And now I realise that they wanted to know. I felt like we were left in the lurch

OK, they haven't got AD n r. They don't even know what it is. We're not gonna talk about it because that's gonna just delay all the processes

We're not gonna inform them of their rights and what they should know and that was took out of my hands on that on that day when my mum was forced to go into hospital. Does that surprise you? That that people would do that? Not now. I know what I know

At the time, I wouldn't have thought that. But guess what? That's it's not just my story from somebody being from a black background. We had local people in the area and they were There was a man that died

He lived not far from us. Died in exactly this a similar way in the same hospital. A couple of wards away from my mom

Same scenario, The more you heard family members extended families talking. A lot of black people were going through the same process. So then eventually it's like actually, it doesn't surprise me because, Isaac, I know that there was a framework when people were walking into the hospital

If you were black, if you was over a certain age and if you had a long term condition you weren't getting the same. You weren't getting the same care you would have if you were younger or from a white background. How can we live in a community where we've got less where we were a minority

But more of that minority are dying. Mm. So true

And that's inequality. I'm just gonna turn the light on a case that we've got dark. I hope I'm answering your questions because I'm It's just a This is how these conversations go

Um, do you think like these things existed for disabled people before covid like, is there something that happened or was? Yeah. So as a black person, not knowing what I know and taking my mum to hospital appointments or whatever, when I started to develop relationships with the consultants with the GP and whatever because I had a fantastic GP and he knew that I knew what I was talking about and all the stuff that I've been involved in, the power shifted and he allowed me to take control. Even with the consultants at hospital, he would give me the right to say, What do you want for your mom? What does your mom want? And what do you want from your mom? It was a joy to go in and see him because I know

I knew every time I went into that, um, GP for an appointment. He had our best interest at heart. And people go into this field thinking, Oh, I want to do the best for people and because they're probably not treated nicely or fairly as a workforce, they're not really going to treat the people that they're treating

They're not gonna be in the right framework to actually deliver that in a safe, positive, creative, constructive way. Yeah, really important points, Kim. So you talked about like your mum getting covid going into hospital, No one being able to go with her And I just wondered about like, you know, there was lots of stuff in the news about what we should do, you know, stay at home

And how did it make you feel as a family knowing that you you couldn't be there like what was coming along for you today? It was surreal because I've always been there for my mom. She can't talk, she can't walk, and it's hard not being able to say bye. And when I rang the hospital because she wasn't, they kept on saying they're doing tests and the tests weren't coming back either

So I will question, and I will share with you. I don't even know I'm not 100%. I don't think my mum died of Covid

But that's what's on her on her. Because I was fighting to find out what's wrong with them. They were doing lots of different tests

Lots of different tests. Oh, where's you know? Where's the covid test? Come back. What's it? Come back

As nobody knows, there was no information. What do you mean, you don't know? But you're talking to me like she's got covid. But you've not come back with any test results

Even when the coroner called me and said, Well, you know, this is what we're gonna put on the death certificate, I said. But I don't even know the results of the covid test three days later. I don't know the results

How come nobody's phoned me and told me the results? They haven't got them back yet. It just didn't make sense to me. Why are people talking to me that she's got covid? There's no results

Three results three to the coroner told me she had three tests. The hospital didn't tell me that she had. When she went in, I was told she had one test, so I don't even know if she did have covid

But I just say it because that's not That's what's written down on on the paper. What could have been done differently? Kim. What could have been done differently? But as a family, we were treated with respect

Isaac. My last conversation I had with my mom was me even fighting to have that conversation. There wasn't a tablet where I could see her and say goodbye

So sorry, Isaac. Uh, all weekend I was I was trying to get through and I couldn't get through. Um And then when I did get through, we promised we'll call you back and the doctor's becoming the doctor called the The doctor will call you back

Nothing. Nothing. My mum couldn't speak

She didn't know what was happening to her. She was a day and a half in hospital without any contact from family, not knowing what was going on. So when we did get through to the doctor, he told me that my mum be prepared for my mum to be gone at four o'clock the next morning

And I said it didn't sit with me. I thought Nah, she's gonna be fine. She's gonna be right

And then I said to the doctor, I've been asking for a call with my mum and nobody's Let me have a call. He goes, I'll make sure you have a call with your mum. This is about 11 o'clock on the night

Um and he promised me that, and I didn't have a call. So at two o'clock in the morning, I was ringing the hospital. I couldn't stop

I said, this isn't right. Nobody spoke to Mum. She's gonna think we've all forgotten about her because we can't get to her or is the person that answered the phone and was Look, I haven't been able to speak to my mum and da da da

So this person knew that my mum would be given a few hours. If she doesn't survive past these hours, she's gonna be gone. That's what we were told

This person knew that. Do you know what the person said? Oh, if I go and give her the phone, I'm gonna have to put my scrubs on. I said, you go and put your scrubs on cos I need to talk to my mum

because I've been told she might not be Here. You go and put your scrubs on. If I didn't phone cos I couldn't sleep

If I didn't get through to my mum, I wouldn't have been able to say goodbye. I didn't even say goodbye. I said, Mum, you've gotta fight this

You gotta get through this. You're gonna come through it. You're gonna be fine

And she was laughing. She was peaceful. That's the, uh if I I think I don't know whether I would be here now if I had have heard her voice for the last time

Yeah, somebody had put her and told her. I know they had told. She was just, like, laughing at me when I was going

Fight, fight, fight. It's so unfair. So sorry is my This is really important to hear

Like, it's so unfair. How can you be bothered about put your protection on and go and give me the phone so I can speak to my mum? Mm, yeah. And tell me the truth

I just want the truth. I have some respect. My mom's been told me she's passed

I can't see her. So at least, But you do wanna put your on cos it's gonna take you ages to put them on. I'm never gonna see my mum again

Yeah, And if the person was scared, I'm sorry. You were scared. I don't know what to do with that, but it it it is

It's a that that phrases have really affected me. Yeah, I can. I I mean, I can't imagine what you've been through

I you know that I ended up in hospital with covid and I couldn't breathe. And that experience of being so alone, it's just so profound. I'm so glad that you got to to have those moments with your mom

Um, I know that this is really hard to talk about, but I know it needs to be said, you know, like it. It's so important. Um, yeah

What was your mum's name that we talk about? Because I know that I've met your mom. So I I met her in, um, a day centre. Once upon a time ago, when I went to I think it was near, right

Yeah. I went to visit, um, Clinton and met your mom, and then I know she loved that place. Um, I'm just wondering about Isaac

You know, she loved that place. You know, even to this day, they all call me to see how she's because they never got to say hello. And they became a big part of my life

So what I'm I'm doing after covid, I've still got that carer label because my mum created so many friends out of her condition and so much support that I still have to manage those relationships. And people just think you don't have to care. Now you're OK

And it's actually, all I know is that for half of my life, my adult life with being a carer, it's hard to have an identity. Mm. And you are such an advocate for the voice of carers

So this inquiry, um, the COVID. Inquiry is hearing about the experience of deaf and disabled people and carers. What would you want them to hear about your experience? What do they need to know? Um, about your experience

So what would you be doing? An inquiry. Think what they need to know about my inquiry is they made an assumption as soon as my mom walked into the hospital and they made that decision straight away of what was gonna happen to her and the route that was gonna happen. What was gonna happen to her? There was no power shared

There was no informing being informed. There was no information about what's gonna happen next. There was no time given to speak a about it

But not just that. People were rude, were rude to me down the phone. And when I the doctor, called me, I thought my mum was OK because he said, I'll call you by four o'clock

If she goes, yes, you can come and say bye. He called me at six o'clock. My mum had gone

He didn't know what time she'd gone. And then they're telling me somebody was holding her hand while she passed that There's two different things going on here. It doesn't make sense

Was she on her own or not? I still don't know. Did she have somebody holding her hand, or was she just left to die? Why was she just left to die? And then when the doctor calls me, why is he taking that moment from me where I can't react because I'm consoling him and he's able to cry and he says, I'm crying here. The doctor told me he's crying

What the hell? My my emotions couldn't come out, cos I thought, as the person that I am, I thought I had to be there for somebody. Mm. And even today I'm like, How did that even happen? I was in shock

I was like, You're crying so profound what you're saying and mhm, what sense have you made in your head of it? If you've made any sense, like, why do you think that happened in that way? I think the workforce are not. They don't understand this big thing that we say personalization and personalised care, and they don't put into action. There's no there's nothing in that workplace where they have to look know that they're the front line for the, um, community to understand and respect, respect people and give them information that would just help them understand what's gonna happen next

Be open, be transparent. What's hard? Even if I am in a place where Oh my God, Your mum my mum's gonna die. Whatever

And you've told me that late and these pandemics have happened. My mum was at the very beginning. So there was enough time to give me some attention to talk about it

Absolutely. There was enough time, The rudeness, the customer service, what needs to change? It needs to be mandatory that they go through training with people in communities. People like you and I that are advocates to show them

There's these frameworks here and this is what you're supposed to be adhering to. They need to be accountable to their community, not to all these c QC and all these people that probably are not fully qualified and understand are in touch with accessing services on a daily basis. Yeah, So, Kim, your your and your mom's story is just so heartbreaking and traumatising

Mhm. But you still get up and you still advocate and fight the fight for carers and disabled people. W w Why Kim? Like how? How do you manage to find that it's my survival? It helps

Helps me stay alive. Um, um, it's got me through my caring role. It was something I could do while caring where I felt like I was giving back something I thought I know I'm qualified to do this

I know that being put in a crisis constantly suffering from mental health Because I'm caring and I'm I'm a young person. I was a young person at the time. Caring

Didn't know where the hell to go for help, but sourced it myself. Isn't everyone entitled to that, Isaac? Yeah. Shouldn't

Shouldn't everybody get a hand a helping hand in? OK, this is what you've got to do. There's services that get paid to do it. And don't do it correctly

I can do it for free. Hm? Yeah. And is there anything else that you wanted to share about your experiences of the covid and the pandemic? It's traumatised me

Because not only have I got the experience of what I've just told you that having someone on which is, um, first talking about somebody external from my family with I've not talk spoken about it to anybody else like this. But also I didn't tell you about. I also lost my mother-in-law, who was young, 52

And the way she was treated on her death bed was absolutely disgusting through covid as well. So she was like she my mom passed away in April. She passed away in August and seeking for information and people holding it back from you professionals holding back because are they Are they scared in their role? Are they overwhelmed in their role? What was the question? I was like, Sorry

I don't know what the question was. I'm just like, other experiences. So, like, uh, this is totally I'm just going in the heart, like, you know, you spoke about the experiences of disabled black people, and I'm just, like, left with this profound sense that you and so many people around you, I've had a really terrible experience during covid like That's just a present

It's like, um, it's really odd with my family because I cared for my mom and everyone. No one cared for my mum, but I didn't expect to move my leave. My li my mother-in-law at Fif 52

She did die of cancer, but and not covid, but the care she got during covid. Um, basically, she was watched and sat there and died. And there was no support, absolutely no support

I was trying to get her a, um, end of life fast track so she she could get out. My husband and his sister had to look after her, and they struggled to look after her. They struggled because I knew all the rights, and I was telling them This is what you gotta do

That's what you've gotta do. And I was having to speak to the social workers. Not while I was just mourning for my mum because I knew more about the pathways from the social workers

They'd say they get back to us. She was dying. They'd get back to us the next week

Isaac. Mm. I imagine there's still equipment coming in for what we asked for when she was alive to make it better six weeks after she died, Turning up with equipment on the doorstep

What's that? Sorry. I can't even I can't even tell you what that is. But, um, I'm sorry

This is not going the way it's supposed to go. This is going the way it it was meant to go. This is just us being real

You know, this is a conversation about how you, your your life and what you went through. Isaac. I don't blame covid

I blame the the thing you know, like this Matt Hancock and stuff. Do you know what I'll admit it. You haven't said it to him anyway

I can't. What? I love that jungle programme. I can't watch it

I cannot watch it. Cos when I look on my screens, I thought, How can they allow this man on V that I couldn't go and say bye to my mum and you had and you know, and I was screaming to say but But he's there getting paid lots of money. What a human would, you know, employ him and give him money to be on a show after how many people have lost their lives

I'm just one story, Isa, and I'm a story of somebody that knows the system. Mm mm mm. But remember, my mum couldn't speak

She couldn't tell them. Oh, is it? This is to me. You we know your your mum understands us

Because how do you know my mum understands you? How do you know? She knows what we're saying. What are you saying to her? What? What is it that you're saying to her? They wouldn't share what they were saying to her. Isaac, I believe they were telling her our seats doesn't look good

And you're gonna get and she lost all hope and she thought, Yeah, I'm dying. So I'm gonna go whether people like it or not. I knew my mum inside out, inside out

It's just what happened to these professionals when covid hit. Probably just scared. Isaac

They were probably just scared. Fitness Beco interview saying they were just scared. Hm

That's the only thing I could think of there, cos the power didn't lie with them. It was lying with bloody government that had no idea what these what, my mum and what these people on the front line were going through. I I blame the government

Yeah, absolutely. They're all on X amount of money. Pump it where it belongs, where it should go

Hm. We're saving them. How? How much money did my mum save? £18,000 on a direct payment

Gave it back cash, Isaac and they they don't trust us. Mm. You're giving me all that? I could have spent that for I saved that money by by getting the care that that was appropriate for my mum and they gave it you back

And you wonder why communities don't trust you. You think they think that we're not articulate, and we don't know this system because we're black Little do they know that there's a community growing that's gonna challenge all of them and they'll be accountable to us all. Absolutely

I'm not depressing you, am I? No. I just I'm just so so similar to like, you know, I'm here to capture your story, but my experiences are very they they're my fault. You know what you're saying? What I think And even when you're saying it and I think that you're so giving of knowing that this will be part of that change process, it's really scary to say these things like I often say these things to people, and I'm I'm like, Oh my God, if I say that and it gets like, you know, like it's a scary thing like I feel that are people gonna hear us? Are people prepared to to hear how bad it was? I don't know about you, Isa, but from my experience, I'm not going to allow it to happen to anybody I know again, whether it be work colleagues, whoever's in contact with me, and I know they're in danger, I am gonna learn as much as I can learn, and I'm gonna be there

And they're not gonna forget my story because I'm even. I don't know whether I can say I'm even going through a process of where I'm complaining. And do you know what I said? It doesn't have to be a complaint

Let me go to the board and tell my story of what happened. They're denying me to the board, and I'm like, I'm still I'm not. They want me to just go to a meeting in the hospital to talk about what happened to my mum

Um, they wanna know everything I'm gonna say before I go into the meeting and things. So no, you're gonna have it my way. Because this isn't just about me

This is about everybody else that died in Covid today. I've got an email. No, you can't go to the board

Why can't I go to the board? I work and I'm going to other people's boards talking about personalization. Why can't I come to to the board that where my mum passed away? So you can learn. And even with this profound experience, this, like this is horrid

Like I I haven't got any words to say this experience, you're still there going to support them. Learn? No. Yeah

What else can I do, Isaac? Because apart from it, I'm not gonna get my mum back. Um, and I think giving up my life and caring was the best thing I've I've got so much out of it, because look what I'm doing now. I'm I'm hopefully I'm trying to make a difference for people

Um, So, um, yeah, I mean, I think my daughter saved my life. I think if if I wasn't pregnant and I didn't have a little one to look after, I would I wouldn't I wouldn't be here. Zoe came at the right time and even the way I was treated through my pregnancy knowing my mum had passed away and I had and they were making me go to hospital once every week because I had Digest or Di Digestant Digest or diabetes, And I didn't wanna be there because I didn't feel safe

I was grieving, and also I felt scared. I didn't feel, cos I had to go to the meetings on my own and then Isaac at 20 weeks and said, Oh, you gonna have a Caesarean and I'm just like bloody hell Co. And luckily, I told my mum I was pregnant

I whispered it to her before I knew it was set like before the 13 weeks, and she probably could tell cos I get very sick when I'm pregnant. So I thank God that she knew that. And my daughter is just like my mum

She just reminds me of that, and that's my blessing. I think that's that's my blessing right there, Isaac. So that is wonderful, like place to to get to in in this really difficult journey that you've had

So what are your hopes for the future? Kim? My hopes for the future Isaac, is that you and I take over the world and people like no, I My hopes for the future is you see more of us sitting around the board table in government not to be there just because we're black and we're that we've got somebody black that speaks for all black people. No. For the future, services need to be led co led and designed with people like Oh, this shit don't happen

Everyone needs to be compassionate, but they've got to sign up to what? All these statements in the NHS England. What happened to all that compassion when somebody comes through the door and they're black? Mm. They don't care about my mum

She's just a black woman and she's disabled. She's in a wheelchair. She can't speak

If she didn't speak, they would have bloody if she had her voice. Honestly, they would have kicked her out of the hospital. But my hopes are that this doesn't happen again

And there's learning from it. Not the same old rubbish that we were talking about before. Covid I wanna see the doing I want

I want people in power to be trained and and made accountable face to face, face the people who you're making decisions for Cos we're we're the experts. Mm. We We're accessing services on a daily basis

Don't roll your eyes when I'm standing there, talking to them and telling them this is what you need to do better. Don't roll your eyes when I'm in the boardroom and this black girl's walking in. Who is she? She's got a Birmingham accent

I know more than you. Absolutely. It's gotta be mandatory training

Mandatory training in all of healthcare professionals met have a group of people who lived experienced leaders that have a programme spread it out across the country. This because they wouldn't want it to happen to their family members either. And I bet it does happen to their family members as well

But yeah, Any final thoughts? Um, thank you. Thank you for letting me. I'm never in a space where I can air it

Truthfully, this way with the work that I do, I know I have to manage what I expose because people will run away, be too scared of my emotions, and they don't want to hear the trauma. Mm. So thank you for giving me the platform

I could have you here all day talking about it, but appreciate you, Isaac. You're doing an amazing thing. So the thanks is the other way round, Ken

So thank you. And thank your mum and thank your family for sharing this. Isaac, can I just say as 11 last thing? I'm so proud of you for bringing it up because people like me feel like it's all it's happened

It's trauma. Nobody cares. And it's forgotten about

We've forgotten about Nobody cares. It's happened. It's gone

Don't care how my mum was treated. And I was thinking that the other day I was thinking, Where's the power? Who actually cares? Nobody. Nobody knows

Your heart's hurting every day, every day, every minute of the day. Yeah, so thank you for bringing it back up. Because Art Remembrance Day it's something that's happened to this country that we need to remember People were unlawfully forgotten about

And thank you for your sharing, Kim. No, Brilliant. We're gonna stop difficult in there, if that's OK, OK?

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