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Report transcript in: Hameed's story
Please Report the Errrors?
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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