Report transcript in: Kate's story -Narratives of the Global Impact of COVID-19

Please Report the Errrors?

So can you tell me a little bit about yourself?

OK, so I'm Kate, And, um

I'm

I live with my husband and my daughter in Cheshire.

She, uh my daughter has learning disabilities and is autistic.

I have two other Children, Um, who happen to both live in London.

So a daughter who's married with, um

one granddaughter and another one on the way.

And my son, who lives with his girlfriend and a dog.

Thanks for sharing that, Kate.

So what's important to you in your life, Kate?

Um,

I think

the most important thing is for the people I love to be happy.

Um,

And then beyond that, I I really care about

the services that people

receive or

draw on.

Um, so particularly because of my daughter,

I'm interested in services for people with learning disabilities

and autism.

Um, I just think there's

a lot that needs to be done better.

Thanks. Kate.

Um, and is there anything that you particularly like doing?

Um, personally, like, what's your hobbies? What are you interested in doing?

Um,

I'm in two book groups, so that makes me read, which is really good. Um,

but it's really hard to find time at home.

So you'll often find me in coffee shops with a latte and a

and a novel.

Um, and

I like to go swimming.

Uh,

just,

um,

sort of the main, I suppose the main exercise that I like doing,

I like walking. Um, I like walking with my daughter,

um,

and meeting friends for coffee.

I think they're the sort of main things I like.

I like music, you know, going to live music,

um, cinema stuff like that.

Thanks, Kate. Any particular music in

I like folk music, but but not all folk music, you know, So you know, when you say, um,

you like folk music?

People think you like all of it, but it's only very sort of specific bits,

So I like people like Kate rs

and, um,

show of hands. And I quite like fisherman's friends.

Um, so particular people I like a lot.

Um,

thank thanks. Kate. Um

so thank you for sharing a bit about you and your life.

Um, you started to talk about your daughter, and and

so this, uh, project is about the experiences of deaf and disabled people,

the experience of carers.

Um and I was wondering,

what impact did the covid pandemic and lockdowns have

on your life or your loved one's life?

So I I

thought

that it didn't have a huge impact

in that

as a family.

We we were very lucky in that. Um,

Maddie Dad know I

are both retired. We've got pensions, so the money wasn't ever going to be a problem.

We've got savings. Um,

and we can be around all day to look after our daughter.

So we were We were very fortunate in

many ways.

I think, um,

our big worry was whether our our daughter got caught covid

because as a baby, she was in intensive care,

um, with bronchitis.

we were very worried that if she caught covid,

she was likely to get it more severely than other people.

And

obviously, we were hearing that people with learning disabilities were having

do not resuscitate

notices put on on their

the health records.

Um,

and I think it it felt clear

that

society didn't value the lives of people with learning disabilities. Um,

as much as other people.

So that was our Our big concern was to keep Maddie as safe as we could And

so we stopped her p a s from coming to work.

And normally she has three p a s who support her

Monday to Friday,

and we have a direct payment from from our council

to employ them. So we stopped them coming.

Um,

and

you know, when it became appropriate, we made sure they had the vaccine.

Um,

and it was just, I suppose that just that anxiety about about keeping her safe

Um,

I think

then again, we didn't think there was an obvious impact on

her in that she's a very

happy person generally.

But

as time went on,

what

we noticed was, um,

an increase in sort of behaviours that showed she was anxious or worried.

So she can't tell us, um, how she's feeling.

She doesn't use speech to communicate. So we have to rely on,

um,

sort of her gestures, facial expressions, her mood

and so on. And

as sort of the isolation continued,

we had more of these

behaviours of tidying things up is a big thing. So she would just find more things

to tidy up around the house. Um,

and then,

um,

Maddie's dad became

quite seriously poorly,

part way through, um, 2021.

And so then he had to self isolate. You know, as, um

what's the word?

Um,

the critically

I can't think of the word Isaac. Critically vulnerable. Extremely vulnerable.

Yeah, extremely critically vulnerable.

we had to be even more careful about, um, isolating as a family.

And

I certainly, at one point,

I just got so bored with doing the same walk over and over again.

We're you know, we're really lucky, because from our house,

there's sort of probably three quite nice

green spaces you can walk to,

but when you do it every day, it's just

mind numbingly

depressing. Really?

Um,

so yeah, so we had to isolate for a lot a lot longer,

and

and then, um, you know, some services tried to open up again. So muddy

sometimes goes to a drop in for people with learning disabilities

in a town that's about 10 miles away.

And they started doing some sessions online,

and we tried that.

And she was so happy to see

her friends

for about two minutes on on zoom.

But, um,

you know, she couldn't interact with them.

She didn't understand what they were saying or what was going on. And so

after two minutes, she she wasn't interested. And, um

and so I and I was concerned. Then you know that some

some services

seemed to be saying they thought it would be OK to keep delivering stuff online

and not in person. Um,

and that did that did happen for quite a while.

Luckily, that service is is open again. Now,

Um,

yeah.

Can I take you back to a couple of points?

the fear and anxiety that you had to a mum

around

the d N D N r s,

um,

like, how do you think we got to that?

How do you think we got to that place of like people learning

just been given D. N. R s.

That's a really

tough question

there. To me, there isn't an explanation other than

people think that that their lives are worth less.

You know their lives are cheaper than other people's,

and

that's quite well. It's very It's shocking, isn't it? It's shocking

to think about,

and I know, I know. You know.

Medics will have

a hierarchy. I know there's a hierarchy of who to save in different situations.

and who to prioritise

mhm

but

to base

those decisions on the fact that someone's got a

learning disability rather than on a health issue or

age or whatever just doesn't seem right.

Um,

so in a in a way,

um,

that's quite a salutary lesson, I think for parents that

society doesn't value your

your Children.

Um,

as much as other people.

Was that a surprise to you?

Um,

deep down. Probably not.

Um,

you know, we've had all the, um

the deaths of people with learning disabilities.

We know people with learning disabilities are more likely to

to die younger than other people. Um,

so no, If somebody had given me a list of people I thought might be on the d n r list,

I might have, um I might have identified

that society would come up with people with learning disabilities.

That's really sad.

Really, really sad. Um, and then you talked about, like, kind of stopping the p.

A s, uh, personal assistance, like, kind of coming to support Maddie.

How did you come to those? Like decisions? Like what? What did you do

on a daily basis to kind of organise getting through covid

Um, well, the reason the way we reached

the decisions was

to look at

the connections that p A s had,

you know, sort of the exponential links

into the community.

So, you know, one p a has got four Children and, you know, quite a big family.

Um, so obviously she was going to be

quite a risk. Um,

and we did. We talked it through with with the P A s,

uh, and

I wouldn't have let them come back to work without being vaccinated.

Uh, and luckily, they all

they've all agreed.

So it was just thinking about those

connections really beyond and and and the risks of

of having those links

Seems like you did a lot of thinking. And,

like, did you get any outside support

information advice like or did you just come up with, like,

did you just do it yourself?

Or how did you come to those?

So they only they only help

in thinking about it I got was from the GP.

And,

um,

I can't remember at what point, though, but I I phoned and said, you know,

Maddie was on a ventilator, and she had, um, asthma as a child following

this really,

uh, bad bout of illness when she was a baby.

And

I remember being told that she that her lungs would or would be affected for life.

And, um

and we can hear, you know, if you just walk next to her along the road,

you can hear sometimes that her breathing's a bit laboured.

And

so I just chatted it through with with one of the GPS who

didn't think that Maddie was, uh, a more significant risk than anyone else,

so that was quite reassuring.

Um,

but then we had her her dad poorly. And, um,

that was all back into lockdown. Really? Again.

And

did you get any support from that social services? Social care?

No.

Um,

no.

I mean, after

what felt like a long time, we had emails about

vaccinations for the P. A s.

You know, I think councils went through a process of

identifying

who worked as p A s. Because the p a workforce

was, um,

pretty much unknown, I think before covid in terms of names and

and numbers.

And once they, um, found out

who local p A s were, then we had letters

about them getting vaccinated.

But my council, even though they've known us for 30 years,

did not ring us once to ask how we were.

Um,

they still don't know

that, uh, Maddy's dad has been really poorly.

And

but it's not something I choose

to share with them

because

I don't feel they're interested.

Um,

and

that

that experience has just made me realise

it, so it sort of you feel it anyway. But it brought it home to me

that

they really don't care about

us as individuals or as a family. We are a case or a number or

a cost centre to the local council,

and I will never, ever, um,

trust them to have my daughter's best interests at heart.

Now, you know, it just reinforced to me

what that relationship is, and it's not

how I'd like it to be.

But that's how it is. That's how they've shown me. That's how it is.

Thanks.

Escape.

It sounds really

like that film sounds really sad And,

like, thank you for sharing, because that obviously

isn't an easiest space or place to be in.

I wanted to ask you about like, um

so you talked about Maddie's dad being poorly, Maddie and her own,

like experiences.

So we did.

We talked about kind of like social care, but, you know,

there were lots of things that happened in covid.

Like,

um, P p mask getting food and all that kind of things.

How did, like,

you know, did that make sense to Maddie? How did

Maddie

How was Maddie, Like, kind of thought about with any any of that.

Yeah.

Um,

I I really thought Maddie would wouldn't wear a

mask in a million years because she doesn't like,

um,

touch some touch, you know, she does. She doesn't like, she resists.

And I don't know what it was or whether just seeing other people with masks on.

She wore a mask. No problem.

And, um,

she was brilliant. Absolutely brilliant.

Um,

I used to go. It's funny because it's thinking back, you know,

to how it was. Um,

how you sort of your memory fades a bit, but I used to go shopping, like,

late at night when there were a few people around.

Um,

I think I I started online shopping

at one point. I must have done Yeah.

And, um

yeah, Matty. Matty was Well, she seemed fine. She seemed fine. It was just,

uh,

as it went on, we saw sort of an increase in these

tidying type

behaviours.

So we talked about like, Maddie. Like, what about your you and Maddie's dad?

Like, do you think

it's had an impact on your well being? And,

um,

this might sound weird, but

our generation

I just think we've been really lucky because

we've had nothing

major in our lifetime, You know, we're born post Second World War.

You know, there were a few sort of

scary thoughts around with

Cold War. Uh, maybe, um,

but we've never had anything that's directly impacted us. Like

like covid did.

And

it just

makes me feel the world's a more fragile place. The society is a more fragile place

than I thought it was.

Um,

so it's It's a feeling that

yes, So anything could happen.

Really?

Um,

anything could be around the corner. Whereas before

I felt quite secure. I suppose

so. There is lots of talk about a post pandemic world.

What does this feeling look like to you as a family or to Maddie?

What do you mean by post

pandemic world?

There's lots of people that talk about like a post pandemic world like Covid is over.

The new normal, like society is back to

Well, I I do think,

um,

I think there is a new normal. I do think

the covid experience has changed. Um

has changed us forever,

particularly around doing stuff online.

Um,

and working from home.

I mean, I I can remember

having to really fight my corner to be able to job share.

And, you know, now I think,

you know, there's an expectation that people should be able to work from home.

And unless it's a job that that you can't physically do that in,

um,

in some ways, I think that's opened the world up a lot more, you know,

So you can get more people together more easily

online, um,

than getting getting together face to face.

But there there's a risk of not not meeting face to face.

And it still seems weird to me If, um,

I get on a train

and there's lots of people around, it's

That's not the norm anymore for me. Um,

mhm.

So, yeah, I think I think things

have changed.

Do you think that we have learned anything from

the Covid pandemic and the lockdowns as society.

I'll tell you something good that that came out of it

for for us was that our street

that's now got a WhatsApp group, which, um,

a couple of neighbours set up.

And

so there's now sort of a bit of a sense of community.

Um,

where I live that wasn't there before.

And

no, I think knowing that

if something awful goes

wrong again,

I'm much more confident that that people will pull together and help each other.

That's a real positive. That's come out of it. I think for me.

Can I ask you, like, do you think

Do you have any confidence that

things

such as like the state like so you talked about the community?

But do do you think,

do you feel more confident that

social care or the state would

be more supportive of or have learned anything?

I I Well, for me, the jury is out still on that I mean,

we learned that people could

work around red tape, you know, they could suddenly work together.

They could, you know, pull out all the stops to to do things

if they really wanted to.

I suspect we're slipping back into

silos again.

Um,

you know, people guarding their separate pots of money?

Um,

so, yeah, I think I think the jury is

out a bit on that,

but I think they're sort of

the civil servants and people who had to work through it.

That experience will stay with them for the rest of their

professional lives, if you like and,

you know, is there to be

harnessed again? If if the need arises.

And

I mean, I

don't know, I'd like to think

one of the things that kept coming out in, um

in covid in sort of government guidelines and and stuff was for carers

was, you know, to write, um, a backup plan

for when things go wrong,

have an emergency plan, you know, to support

your family member.

And I kept thinking, I can't do that. I still can't do that

because there isn't anyone.

It's It's like the system wants you to.

Well, they want me to write a plan that says, If Maggie's dad and I

or you know, run over by a bus or poorly,

these are the people you can call and they'll they'll sort it out.

We haven't got anybody.

Um,

and for me, that's a a massive gap. Still, that the system

hasn't dealt with, Uh, and obviously, my fear would be

that Maddie would get carted off by a social worker, um, into some awful place.

So So we have to stay. Well, um, or at least

can't both be ill at the same time.

You talked about like, um,

guidance. Like, did you find

the information available during covid useful? Did Was it

accessible? Was it ready? Like, was it Did you find it there when you needed it?

Uh, it depends what you're looking for. I mean,

the rules about you know

where you could go and how many people you could mix with and whether

it was indoors or outdoors and that were OK up to a point.

But after a while, I just sort of

lost the plot, Really? And

we weren't mixing with anybody anyway, so, um

yeah,

I mean it. It was confusing. At times, I I do remember, um,

trying to work out how many people you could see and where you could go and,

um,

and stuff like that.

Um,

but then I think the whole country was feeling its way. Really?

Do you think the experience of deaf and disabled

people were very different to other people's experiences?

Um,

yeah. I mean, I I think a lot of disabled people had it much, much tougher than

than Maddie did. I mean, Maddie was

at home with two loving parents.

I mean, I think people particularly who were living on their own

with maybe support from P. A s

it was

What did you do?

Because you've got the p a s coming in with, you know, those connections with

are the people so bringing risk into the house and

how that, you know, even just getting hold of PPP and stuff, um

was really hard for some people and maybe even making decisions on their own.

Um, you know, we had two heads to to think about things.

and you know, not maybe not even being able to get out

to the shops on your on your own, especially if you were feeling

poorly.

Um,

I think I think it was a lot harder for

people who are disabled.

Does that surprise you?

No.

No, I just think everything's harder, isn't it? Um,

you know it. Still, we live in a society where

it's hard for people to get around on public transport. Um,

even to get into, like, a restaurant or a pub. Um,

you know, I I keep saying to people when you look at things like, um,

building design,

I can't have somebody who uses a wheelchair come to

my house for tea because they can't get in.

Um,

yeah, everything's

everything's much harder.

Um,

I mean, I Yeah, there was a couple I know. I don't know

Well, but throughout covid,

you know, Mum and her dad, they just seemed to be

pushing their daughter in the wheelchair

for miles and miles. Um,

every day, I

Yeah,

I think it was pretty soul destroying.

Just trying to get some fresh air and and get out of the house

sounds really difficult. And, look, um,

yeah, but I think Yeah,

I I think we had it

relatively easy.

Um,

yeah.

So this piece of work is about, like,

the experiences of people through the covid pandemic and lockdowns,

and it's feeding into the inquiry. So what? The covid inquiry. Sorry.

Um,

what would you like the inquiry to hear

about the experiences of deaf and disabled people.

Really?

Just that

definitely disabled people are human beings first.

And

as a society, we should care about about everybody.

Um, and we should look out for those people who

maybe need a bit more support than we do ourselves.

That's the key thing, I think because I think if if if if we saw people as human beings,

you wouldn't let

people

suffer or

be on their own, would you? Um

I just think it's seeing

seeing people as as people.

Is there anything else you'd like to share with me about your experiences?

Um,

I don't think so. Isaac,

I think

we've covered most things. Any questions for me?

No.

I'm gonna stop the recording there. OK, um, if that's OK.

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Author

streetreporter

Post date

18/04/2023