Hameed tells Isaac about how older people, or those without the confidence to ask for help, were frequently without the basic support they needed during lockdowns. Hameed’s experiences are that local communities were often more effective and quicker to respond than statutory services, and that communities rallying together with informal care was perhaps the best aspect of the COVID pandemic.

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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.

would you tell me a bit about yourself? Hello. Hi. I'm Hamid Khan. I am, um, an ex service on mental health services

I think that's really important to mention, because covid did have a big impact on my mental health. I'm also an open heart heart failure patient. I had open heart surgery in July 2019, which makes me very vulnerable to covid and has made me

And also I'm a care for my mom who has physical and mental health conditions. Thank you for sharing that. So why did you wanna share your experience of covid with this inquiry? So I think the reason why I wanted to share is because one of the things is that it has really had a detrimental impact on people who are vulnerable, like my mom who's aly with severe diabetic blood pressure in a high risk category

It's also had a big detrimental impact on me as I'm a open. I've had open heart surgery and I'm a heart failure patient. And also the fact that we've all been affected very badly in terms of our mental health

What, um, impact did COVID-19 and the pandemic or lockdown have on your life. It had a very massive impact. Sadly, it didn't feel like there will be such an impact

While I was living in the covid period of the pandemic, I didn't realise how I was gonna be affected long term because of it. And one of the things that had happened is that I felt very vulnerable, isolated, lonely. My mental health had deteriorated

And on top of that, I got covid. I tried my best not to get it, but sadly, it still caught up with me. And then that left me in a very long term

Covid effects lethargicness tiredness, uh, feeling sometimes shortness of breath. Also, I headaches feeling dizzy. So now I understand what they meant when they said, If you fall in the vulnerable category, you must shield and isolate yourself

Because once I got the covid and the impact left afterwards, that's when it all kicked in. How important it was for me to ensure that I keep myself safe. And my mom, who's also got covid and was almost hospitalised Thank you for sharing that

I'm so sorry. That was your experience. How did you make sense of, um Covid shielding

How did you keep up like Well, how did you manage all of that? How did you know what to do? I think it was very difficult. I mean, I'm gonna be very honest and and say as it is in the early stages because we've never been through coal, We we never been through something like this before, so I took it as a joke. And I remember one of the person rang me and said, We're gonna be cancelling some meetings And I said, Why? And he said because of covid people and I remember putting the phone down and subconsciously, you know, you have those subconscious thinking Oh, here we go again

People can't handle the flu. An excuse not to go to work. It's only like six weeks later, I realised the impact and the seriousness of it and the the the terrible effects that it's going to have on us as a society but also on our communities and us and as individuals

That's when it kicked in when I saw on television the death, death rate, the hospital hospitalizations of people and also see young, healthy, quite active people dying because of covid and I got shook up. But I think it really hit me hard when my mother got it and she was literally on the verge of being hospitalised. Actually she was going to be hospitalised

The only reason why she didn't is because she refused to go to the hospital because she saw on the media people going to hospital and not making it. She was like I'm not going to hospital. So I was given an ultimatum by a doctor on you know, the telephone doctor

Because at the time you had to ring a number and the ultimatum I was given is if my mom makes some progress and change happen in the next four hours, then she doesn't need to go into hospital. But if nothing changes in the next four hours, she will get hospitalised. We were very lucky

I made her drink a lot of water, a lot of water, a lot of water and some of that drinking of water helped her to sweat. And because of that and urinate and because of that, her temperature came down. And when I checked it within the four hour period, it had come down

And when I spoke to the doctor and I said Her temperature is calm down. She's feeling a little bit better. She said OK for another 24 hours, we'll monitor it again at home, and that's how she avoided hospitalisation

I I know that we've spoken about this, that at point you thought that you could lose your own life and that you thought your mum might pass away. What impact did was that having How did you manage all of that? It was very difficult because, you know, when you're a carer, you always assume the worst will only happen to your loved one. The person you're caring for

But when you're in a scenario when you actually are a heart failure, patient yourself and you're also in the vulnerable category. It's a very scary space because at the same time you're assuming that there's more risk of you losing your loved one. But actually you're just as equally at risk of losing your own life

So it was almost kind of being blurred between trying to be the best carer but also being a patient of making sure your own health is not put under compromise. And that's the stuff that I struggle with. I think I was quite good prior to being diagnosed with a heart condition

I felt quite a active, healthy carer. But once I've had my own open heart surgery and my own health has not been very good. I'm always sitting on the shelf feeling very anxious and scared that what guarantee is there that I may not go before my mom because of covid? At that time, I felt like that

I'm so sorry. That was your experience. You've spoken a lot about sort of shielding

How did you understand or make sense of what you needed to do in that phase? I think, uh, how I understood what helped was knowing that there was good information around reliable sources around that helped me a lot. Being able to read up, being able to phone up a number, being able to watch it on the media. Some things media did hype up and did do a lot of scaremongering

But at the same time, it did help to gain information and also having virtual peer support like a WhatsApp group or contact, because at that time, not having contact with humans and being around the person you care for created a lot of agitation, irritation, frustration. And the worst thing is that when I'm doing things, I can get a carer to be with my mom if I'm going to a meeting or if I'm going on an event. When the covid happened, all that stopped and you couldn't ask the carer to come in and you could leave the building

So I was literally stuck with my mom for 24 hours, and the only stimulation we had was each other. But the worst thing is that I wasn't getting any intellectual stimulation. All I was getting was constant whining and moaning and complete

Rep. Rep. Rep

Repetition of the same question being asked by my mother, which made my mental health go very poor. He talks about passionately and really made me think about how carers are doing this stuff caring and how when the circumstances change, such as being stuck indoors with with the person they care for, I just wonder about the wider services and the support like, you know, did the social services did you have lots of offers of support? Um, how what kind of support did the people reach out to you. Did services reach out to you? That's what I'm trying to

The services sadly reached out to me in a artificial way. That's the right term. I'm gonna use my face to face

Appointments got cancelled. I was supposed to go in for a E C G. Where I have every few months

My heart scanned, all that was cancelled. And I've got a virtual video appointment. I could actually exaggerate my symptoms, or I could actually mask my symptoms and not tell the GP

What? So the consultant, what was going on? So they were going on what I was saying rather than what really was going on inside the heart. So I really got frustrated. The fact that I had no technology like e c g heart scans to really show what is really happening

So I always felt like there was artificial service, like a phone call, a video call, um, you know, appointments. And it was just a verbal discussion. And based on a verbal discussion, I was being diagnosed with what was going on

It didn't feel right. And do you feel as someone that is a carer, someone that is living with a long term health condition, Um, that there was enough information and support for people to understand covid understand shielding and manage their mental health. I think there was good understanding on what is shielding people kind of understood

OK, we're not supposed to mix with people. When we go out, we must wear a mask. We must stand in the queue two metres

But there was not much understanding of mental health and how mental health can be affected in these sort of circumstances. And also there was a lot of different interpretations to isolation. Some people said isolation meant that not going out of your local community

Some people thought it meant not even leaving your bedroom. Some people felt that it was OK if they went to visit their siblings 56 houses, but not to go to um anywhere other than that, but actually so there was no clear definition when we talked about isolation. So ideally, I noticed the first eight weeks everyone was still bouncing in places because not knowing exactly what is meant by we need to isolate so clearly from that I'm taking away that the information there was a lot of it, you said

But actually it didn't necessarily resonate or make sense at the times it needed to. That's correct. That's correct

Yes. Can I ask you about sort of the different times and stages of covid so that you've talked about, like, the initial period? And obviously there was different. There was, uh, lockdowns, different lockdowns, different shielding times

How did you, like, understand what you needed to do? How did you manage that? And what impact did that have on, like your everyday life being able to do shopping, being able to, you know, talk about appointments? What what impact did all of that have? So could you rephrase the question for me? Sure. So you talked about the early stages of covid and Covid? Um, the covid pandemic. Obviously, there were various lockdowns

There was the different shielding groups and different times. How did you manage, Like, everyday life within that that time, you know, like of kind of shopping and looking after yourself. And all of the things that I think during the cold is very difficult

I'm not gonna be able to make it any simpler. The truth is, it was extremely difficult. I had put nearly two stones of weight on Um how many times can you go to the same supermarket and stand in a long queue to get items? So you try to go as little as possible and do as much bulk shopping as possible

There was no appointments anymore. Uh, in the in the covid period, it was all telephone and and and, you know, uh, also video appointments if you were lucky. So it was a different exercise again, OK, they were saying, Go out and exercise

But where are you gonna go to your local park on your own? It's hard to motivate when you are with people. Imagine being on your own. So, to be honest, I would say that it was almost like I felt during the covid very hopeless, very helpless

And I during the covid I really understood when someone says they feel hopeless and helpless what it actually means because that's when I actually realised in the covid pandemic how I felt so hopeless and helpless. They're so powerful. And I'm so sorry

That was your feeling. Do you think there was like, do you think there was enough done. Did you think What? What could have been done differently? Like, Maybe not

It was enough. Done what? It could have been done differently for for kind of deaf, disabled people and or people that are carers. I think what could have been done for disabled people and carers is first of all, a good quick kind of joined up some sort of strategic committee that should have sat down and said, We've got nearly seven million carers

I might have got the figure wrong, but I think there's about, you know, I know 3.9 million carers are kind of officially known, but it might be up to seven million because caring could be full time. It could be 24 hours a day, seven days a week

Or it could just be an hour a month. But you still fall in the caring category. So I think over seven million people were just kind of now left to fend for themselves

So what could have happened? There could have been a meeting, uh, to say How are we going to ensure we roll out support for these carers who may also have long term health conditions? themselves and also how we're gonna support disabled people who may now are gonna be extremely vulnerable because they may not be able to go out themselves to get things. But they might not have anybody either. And I know some people, which is very sad to me

One of my neighbours is an old lady, and she said for nearly 10 days she drank tea without milk because she didn't have any milk and she couldn't leave the house to get milk. And for 10 days she was basically surviving with tea without milk. She had no eggs left

She had no bread, so she was eating a lot of tinned food that she had left in her cupboard. And it's only about 10 days later by default that she saw her neighbour going past her house, her next door neighbour. She really hit hard on the window, and she called over and through the window

She said. Look, I need items, I have nothing and that's when the neighbour clocked on. Oh yes, she does need someone

But before that, the reason why she didn't have that because she's seen the neighbours had seen people come and go from a property out to before the pandemic. So they just assumed that there was people looking out for her, but there was no one. So I think this is a little example of showing you that disabled people probably were hit the hardest and feeling very, very also to ask for help

You need to have a certain level of confidence and a certain and some people shy away from asking for help. And they suffer in silence. Thank you

And I know we've spoken about this before, So you said that to me that you believe that the reason that you got covid was because you had no choice other than to go and get shopping and you had no choice to to engage with kind of everyday activities. Um, that had a massive impact on your like you're still kind of experiencing long covid and stuff. Do you think it would have been very different if you'd had the right support? I think definitely

I think if I had the right support, I could have had someone explain to me what covid is. W what the different processes that we went through during covid and a lot of lot of difficult challenges and problems and struggles could have been avoided. They could be made a bit more easier to deal with

Thank you. I wanted to ask you, um, about sort of. There was a lot in the media around particular groups of people, particularly those from black minor communities and and covid

Um and I know that you're someone that advocates and is very, um, passionate about the rights of disabled people, but not only the rights of disabled people, those from minority community or ethnic backgrounds. Um, what was your view about kind of the messages and the support And, you know, the kind of stuff that was happening for for communities in that time. I think first of all, black Asian minority ethnic communities were not considered in terms of cultural sensitivity and cultural needs

And then later on, it was picked up that they were disproportionately affected more by covid than mainstream communities. And that's when it became all, like, you know. Oh, my goodness

We have this, uh, situation. And then it was more like the community. The black, not ethnic community was trying to navigate themselves through this pandemic and struggles and really kind of really kind of, rather than being given services but really kind of shouting out for services, crying out for services

And then some services were set up by not government, not by local government, not by statutory sector, not by, uh, NHS, but communities rallying around together like lot. The mosque, they food banks. They did, uh, pharmacy deliveries, prescription deliveries to people's houses

They did shopping on behalf of people. They went and checked up on people to make sure that they were OK and stuff like that. And yet this was done by the goodness of faith communities, cultural communities, local informal people just doing things for others

And I think that all could have been more nicely, uh, organised. If there was a bit more communication between these communities and the government, more could have been achieved in a short space of time and a lot quicker. I know a friend of mine who lives in Rochdale

He's and he's community groups set up a a AAA project called Army of Kindness. And they were just young people in the community who come together informing of going out and helping the elderly as much as as they could. And I thought, what a great pair of talented, skilled, helpful young people that could really be used to rise to the maximum effect only if they were working in partnership with a structured voluntary organisation

And that's why I would have liked to see thank you for that. So my next question would be that there is a lot of talk about A that covid is over or we're in a post pandemic covid world. What does this time now? Um, feel and look like to you as a person with a long-term health condition and, um, a carer

I think definitely the pandemic has scarred us. It's definitely scarred me in the sense that you always think what's next. Is there another covid coming? Is something worse coming? It's made me realise that anything like this could come again in different forms and shapes

I think I'm tired and exhausted. The fact that I've keep after having boosters, um, I've had three boosters and I recently had a letter saying, You know, the booster. Apparently, they say the booster is up to six months, and then the effect starts to die out

You need to have another booster. So I'm thinking, will this be something? Now, that's gonna be a normal life. Constant boosters, I think also the fact that the impact of the effects of, like, feeling tired, lethargic feeling, uh, really, really exhausted

It does leave a big impact on you. A long run. Definitely

And that's something also has an impact. What do you think we've learned as a society? Um or what have we learned from the Covid pandemic and the lockdowns? I think one thing I've definitely learned and maybe others can agree with me. Uh, who are who will be watching this video is that we have learned that you got to have a lot of resilience when things get hard

One thing I've learned how important unity is and supporting each other. You can have a lot of money, but money can't buy you, uh, strong networks of your community those you have to work for, you have to earn them. You have to develop them

You have to put energy time effort. So one thing the pandemic has done is made me realise that it's so important to have strong community connection so that when something like the pandemic happens. You are in people's thoughts and minds in your networks, and they are there to check up on you to look after you, to support you through these difficult times

Also, I've learned that we must appreciate when things are going well, and we must cherish that and nourish that and make the most of it. But also we must always be on guard and mindful something unexpectedly can happen. Something difficult can take place

And it's about developing resilience, knowing how to manage those challenges and difficulties as best as possible. The pandemic nobody was prepared for, and it took me three months to really understand what was going on. And it took me three months to kind of say, Right, I need to buckle up

I need to get my head together. I need to get myself in a in, in, in, in a in a positive frame mind in order to deal with these challenges. For the first three months, I felt like, apart from the fact that I was in sectioned, I don't think there was anything else that my mental health was not poorly, poorly deteriorated

I think that if circumstances were different, I probably would have got section because my mental health was absolutely in a terrible state. I'm so sorry. That was your experience and so grateful that you you can share that

And I know it will make such a difference. I'm just so struck by your experiences and we could talk forever. And I wanted to ask you this inquiry is about the experience of, um those people in our society, you know, like deaf and disabled people, carers, and I'm

And this inquiry is really about bringing those lived experiences. So I want to know from you and you're so passionate. What would you like? The inquiry to hear from the perspective of deaf and disabled people and carers, the death and disabled people and carers

I think that sadly, the truth is this breaks my heart. But we lost a lot of people with disabilities and long term conditions because of covid. And I like to say not because of covid, but the way that the services were not designed and developed and changed during covid to support disabled people

And that caused a lot of deaths of people with disabilities and long term conditions. So one of the things I would say is that going forward on death and dying that we really need to in the future when we have a pandemic like this, really put disabled people at the heart of it and say, Let's first make sure we prioritise people with disabilities. We need to go out there, provide adequate support so that we can avoid their health deteriorating or them catching covid

And also, we need to create a system in place that carers are informed how to support and look after their loved ones who are, uh, have disabilities or long term health conditions. Thank you. That was so, um So, uh, that was just mind blowing

I I'm lost a word. And, you know, I've never lost a word. So I wondered if you had anything you would want to share with us about covid about post covid and and any hopes for the future

I think the only thing I like to share about during covid is that it was difficult it was challenging. It was extremely extremely, uh, bad for us to go through it. But one thing has come out of it

Is that it's shown that we do have care in the community and when I say care in the community, I mean informal care in the community. I've seen so many wonderful people that I never expected that would have been there to support each other or support people without any alternative motives or expect anything back. So that's one thing that came positive out of it, that we've shown the government that we can come together as communities and we can get through difficult times

I think the other thing that after the covid I've learned is that we have become more and more mindful of appreciating our health and well-being. We have come to an understanding that is so small. Something small or something big can impact on our mental health and how important it is to develop resilience, to protect ourselves to having good mental health and dealing with poor mental health in the best way possible

Because I took mental health for granted, didn't realise something like a covid could really make me go even extremely unwell to a stage where I could have almost been sectioned. So yes, that's what I would like to say. And now I think going forward for the future, how I see the future

I see a future in a bright place that we know what life throws at us will find a way to get through it. One thing that's come out of Covid We all become digital savvy. We become digital competent

We become digitally skilled, not because of choice. But we had to, and I think Covid never happened. I would still be sitting here today thinking, What is zoo? And I'll be asking you if we were having a meeting

I said, Where would you like me to come? And I'll be probably travelling down to London or expecting you to travel down to Birmingham. So what the Covid has done is made us realise there is virtual platforms to connect, to communicate, to continue doing the work. That makes a big difference

And that's something will remain with me from covid. I discovered a digital world. Thanks very much

Do you have any questions for me? I think Isaac, thank you so much for, um asking some great questions and really brought some food for thought. To my mind and some curious questions for me to go and really explore and look into what I would like to know is how will what we've done today. The recording

What is one of the outcome you're expecting to achieve from this? What is it? What is the purpose of these videos? So you know, when I sent you the information about this, So just be directly into the covid inquiry. And ultimately, we will gather the lived experiences of deaf disabled people, people, long term health conditions and carers to really speak to and going back to what you said. How people felt left, left, left without that right information and how disabled people have forgotten

So I think those voices will really be central to this inquiry and hopefully that we will never be in a position again, Um, that people feel left behind and we we won't have the same kind of impact in terms of deaths. And because I we all want people with disabilities and people with, um you know, care responsibilities in such times to to be able to manage. And I think it needs We need to hear these really painful, hard things

Like I'm really emotional side and I think we need to hear these because I think it's easy to just go into doing stuff and thinking the world is totally covid free and that bright and, you know, New World. And actually that pain is still there. That experience is still there, and I probably would take away most of all you said about the impact is still present

Mental health. Thank you so much for your time. And thank you

So stop recording there..

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