Jo is a parent-carer and tells Isaac that the government information and guidelines given about COVID were very confusing for many people. To support people in her area, Jane set up a multi-agency group (health, local authority, children and child's social services and. education), which asked questions on behalf of parent-carers and obtained the answers or explanations at those meetings, then shared the information with other parent-carers
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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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.

just Oh, yeah. Joe, would you introduce yourself, please? Oh, I'm your Phillips. I live in Swansea in Wales, and I'm a parent Carer. So and now, adult son who's 19 and I've got two other Children

One is 16 and one is 18. My 16 year old is just diagnosed now with, um, processing disorder. So we're sort of trying to help her through that

OK, thanks, Joe. So, Joe, what's important to you and your family at the right services at the right time at work? Well, and what What do you do for fun? Like, what's what makes you you It's not fun at the moment, Unfortunately, um, as the system has has let my family down. So we're in a situation where, um instead of me working and only my home home, I become a single parents family living in a house, living on benefits

But I think for me, it's about, um, making sure that as a family to go through what I've gone through. So therefore, I do a lot of voluntary work. Um, and we've set up a charity, um, in my local area to help help pro professional help pain professionals when they're looking at new policies and procedures

So this piece of work is exploring the impact of the covid pandemic. So what impact did the covid pandemic and lockdowns have on you and your family? Gosh, um, I think the main impact. So for for my girls, it was extreme mental health difficulties

Um, my son quite enjoyed it because he didn't have to go out. Um, which isn't good for him, Which means for the last, oh, three years, he has not left the house at all. Um, services stopped

Um, I know in Wales, a number of services. Um, as in day services stopped p a start coming into homes. Um, which made life really, really difficult

And the added stress when you're carrying 24 hours a day, seven days a week, no break, and you've got other Children in the household usually have a break when they go to school or college. Um, made for, uh, really difficult figure. Thank you for sharing

No, it's really different. It sounds really difficult. So when things stopped, did were you involved in, like, the decisions? Like, how did did you just get told it was gonna stop? What happened

Um, so lockdown happened. Um, and as parent parents, we were really lucky that we'd formed the charity that we had. So we we actually got together with our local council and arranged to have a weekly, um, multi-agency meeting first questions that our parent carers are asking, Um, there was things put in place where, um, Children with additional needs would be able to go into schools

It wasn't happening. Um, services and P p I equipment weren't happening. Covid testing kits weren't happening

So with within this group, we had health, local authority, Children and child social services and, um, education all in one room every week. Um, and what we did, we put together a lea flat, are frequently asked questions, but the answers from those returns And I think we did three versions throughout the pandemic, um, to help share the information with our parent carers. So they were getting the right information kindly as we could do it, Joe, was this led by, like, the needs of like did you, as parents lead this rather than Yeah, it was like it was led by, um, there's a lot of peer networks, so you could see the frustration

You could see the absolute crisis that parents and families are reaching. Um, So what we tried to do then was work out way because we had connections. We sort of sat around and said, Look, you know what? We'll do an online meeting, we've got to go

So in all fairness, we were lucky with the the paid professionals that we approached and we led that we found some funds in to get these leaflets out to parents. Did it surprise you that it needed to be parent led? It didn't. It wasn't a surprise because most things are, unfortunately, parent Li disabled people lied

Um, but what did surprise me was the engagement we had was really, really good from, um, you know, outside the agencies, statutory organisations Did you feel like as a parent and as someone supporting a deaf and disabled or a disabled person that there was enough information and enough how? How did you make sense of, like, lockdown covid? Yeah, and that's why we did what we did. There wasn't enough information. There was mixed information

There was information. Um, it was just so messy and nobody could get get a straight answer. So so as families, we were just so distraught that we thought we had to make sense of it, to make sure that we were all on the same page

And we all have the right information at the right time. And some of the other people that shared their stories talked about some of the scary things that happened at the time, such as like, there was these do not resuscitate orders that were being placed on people. Was that the same in Wales? What was going on in Wales? 100%

So we had, um there's quite a large, um, community of parent carers who've got Children. And these Children could be 50 years old. You know, you're a parent carer for the rest of your life

So there was a large number of the community that were absolutely terrified of this. Um, we tried to get a straight answer from health boards. It was quite messy in the answers

So it wasn't. We weren't given straight answers. Um, so there there was a massive fear, um, which then led people to the extreme that, you know, they were disinfecting shopping outside the house to make sure it wasn't coming in

Um, so yeah, And that added to the mental health crisis we find ourselves in. So So the next question I had and I think you started to touch this. Um, So a lot of people are talking out, like about a post pandemic world

Or as if covid is over. What does that statement mean to you and your family? Nothing at all. Covid is still here

We you know, we're all aware of that. Um what we're finding and what you know other families are are sort of saying to me is that they're using Covid as an excuse now not to reinstate respite, um, things that were there before covid. So it's been used as an excuse rather than what it was

Does that surprise you at all? Not at all. Not at all, you know. Is it the understanding is that we all know that, you know, cost of living has gone through the roof

You know, local councils are having their funds in completely health water and that we understand. But every person deserves the right to live the life that they want to live. Therefore, statutory services need to be there

What's your relationship been like with statutory services? Um, unfortunately for me, personally, um, we've had a really, really difficult road. Um, my son, unfortunately, doesn't fit into any boxes within the health board within local authority. Therefore, he he doesn't get the services he needs to help him or us as a family

Um, which is unfortunate because he's not the only one. Um, so for me, it's been really difficult, but on a volunteer sort of aspect working with, um, my local authority and health board, you can start to see the culture change, whereas things that would have really, really helped my family are starting to be implemented. So, um, change can happen

Did you think that, You know, you talked about like, p A s and not having p a s and covid like, how did you manage that? And did you think things would would change as a result of covid? Um, yeah, that was really difficult. So, for myself, it wasn't, um, sort of from a personal. It wasn't that bad

Other families really struggled, refusing to come. Um, so they they were getting the right that they needed, and again. Carers that were supposed to come in weren't coming in, so it was really, really tricky

Um, I think the difficult thing is that families were just left. Just keep going. Um, and I think parent carers especially it's even more difficult to say

They can't do it anymore because they're your Children. And what do you think should have been done differently? What could have been done differently? I think they needed to be more clear on the guidelines, but also, and I I'm gonna be quite brutally honest. P A s were given two massive bonuses caring during the pandemic, uh, monetary bons

When they weren't able to do their jobs properly, it was left to the unpaid carer who only got one payment of £500. So there was a £650 payment for P. A s because they were paid carers and there was another one of the 1000 something paid to them for all their work

So I think it's a recognition of actually he used to do a really good job, and it was really important. But they didn't look at that through the pandemic. They didn't lock up the unpaid carer and the things that happen to families and their disabled loved ones

Were they already there? Or is it surprising you or like, did these, like, were these things already there and got magnified or they were magnified, I think, to an extent, um, so simple things like, um, young carers couldn't go and get a prescription shopping. If you were a paid carer, you could go shopping in the early days when, you know, there were certain times you could go in, but only if you were a paid carer. So that meant unpaid carers couldn't do that

You know that there was a real line between if you get paid for it or if you're just doing it to save the system, going into crisis. Because if all unpaid carers said during covid, I'm not doing it anymore, the system would collapse. Did you think any thing would have changed as a result of some of the way that we organ things were organised in in covid, I I hoped it would

I I hoped that there would be more choice for disabled people. You know how they wanted to have their appointments. You know, there was a lot of things online which really worked for some people

Didn't for everyone. I'm not. I'm not saying that, but they should for me

I would think now that it they could see it worked. Why can't they have a approach if it works for the majority, Not just the minority. And you said about this idea that there's a lots of feelings around everything being used as an excuse because of covid

Um, how does that impact on you and your family and people like you? Um, the impact is that little things like, um, there's a family I'm aware of. Respite wasn't reinstated When everything opens back up, the thing is, because of covid. Now we've got to do a new assessment

Well, nothing's changed. If anything has got worse. Um, so it's It's all about services, saying they haven't got the resources yet before the pandemic

It was happening anyway. Does that make sense? So that that's the feeling within the community and this idea of like re assessment, like what impact is like having to go through a reassessment in that process again, knowing nothing's changed, But it's got worse. Yeah, it's really difficult

So you know, it's difficult for the person that's been assessed. It's difficult for the cared for. It's difficult for the family because you've got, you know, people in and out

So you've got a constant you've got, you know, 80 pages of paperwork that says the same thing as 80 pages. If not it, it's it's more added to it. Then it's got to go to a panel

Then you've got to wait for that. And then they're sort of saying, Oh, you know, because of covid now we haven't got enough resources and its yeah, that everybody involved Are you particularly worried for the future because you mentioned, like covid and the cost of living? Do you feel massively, massively? Um, like I said, you know, because the the the system fails my family. I've gone from a working, married mom owning my own house, paying a mortgage to, um, a single mom living in a council house, living on benefits

You know that that's it's not the life I I wanted for myself. I've got a son who doesn't fit in any boxes, therefore, can't get any mental health his mental health needs can't be met, but a social worker that is absolutely phenomenal. Her hands are tied

She doesn't know where to go next. Um and then you've got two other Children that have had to live through all of that. You're sort of trying to support them going to through a levels G CS e s looking at universities

It's really disappointing. And a lot of people aren't aware that if you are on benefits and you get carers allowance, you don't get any more than anyone else on benefits. Your carers allowance gets taken off your benefits, the whole amount

Therefore, you're left with the same amount as somebody living next door. That isn't caring 24 hours a day, seven days a week. So my bills are are a lot more

My son's got severe o CD. Therefore, everything has to be tumble dried. He's in the shower for about an hour and a half, two hours

Um, heat is gonna be on if you need to go to the toilet. You know, there there's certain things that happen that people don't realise that actually, we spend a lot more than than your average family of four. And like when you tell services about this

Like, what's their like do? Do they believe you did that? What? What? Yeah, it's It's a it's a bit of Oh, yeah, that's unfortunate. Um, yeah, I've I've tried to speak to my local MP about, you know, the difference. That actually, I don't want for benefits

This is not the life I planned for myself. Um, and actually, I earn less than than than other people when I do more, and it it it's sort of, you know, a game playing and waiting, waiting to see if I can get an appointment with them. So you don't need to answer this question, and it might not be applicable

But during covid, they gave, like, a £20 increase to people on. Um, yes. Only if you were on universal credit

I didn't get that. Not on universal credit. How does it make you like what impact? I had the £500 the carers

Um, so it was a Welsh grant that all um and carers received. And I had that. And it did come in really handy

I will be honest. That was this year? Yeah, beginning of this year. Um, yeah, but during

There's nothing extra for if you weren't on universal credit and there were other things that happened at that time, such as the furlough scheme, such as like the Self-employed grants. How did it make you feel knowing that there was all this stuff happening for other people? But actually, the people that may need it most of all weren't getting that kind of support. I was really upset and frustrated because without me, my son would cost the state and thousands of pounds, you know, and I have under the social services and well being act

I have got the right to say I'm not caring anymore. I I It's frustrating. It is really frustrating because I know that what I'm doing is best for my son

But unfortunately, it's not best for for me. So thank you for sharing, and that sounds really hard. Um, and I appreciate like everything you've told me

So there's a you went into a space, which was like, I know that there's these acts in place, But how do parents say things that I can't cope with? You can't. You can't. I will say, you know, I'm lucky in the respect that I'm able to speak out and I'm able to tell people, um, I will say my local authority has changed the way they they use the direct payments, especially where carers allowance

And I was the sort of, um, trainer training wheel that did it because I said, You know what? I I don't need a p A. This is gonna cost you thousands. I want somebody to cut my grass so I don't have to do that so I can have a cup of tea and just sit down and a cup of tea and have five minutes

I'm not worrying about that. So there are simple things that you can do across the world, but it's just listening to people that live it. It's the most important

Listen to what they say. We're not here to shout and scream. We're just here to make things better for the next group of people coming through the system

And do you think that we've learned anything from the covid pandemic? 100%? I think we've learned we can work in a more efficient way with people 100%. We can involve more people. Um, we can learn from things that didn't go go well or decisions that were made that maybe weren't the right decisions learned from them

You know, it's OK to be wrong. Just listen to them and move on. But I think the biggest thing everyone has learned is working in a different way and listening to people and talking to people

Do you have confidence that will happen? Um, in some respects, I do so in my local area. Yes, I don't because it's it's happening wider than that. I haven't seen any evidence of it, so I my personal view would be No

I still don't see real life people coming to inquiries. I still don't see real life people attending, you know, like for me. It's just the Senate that have a real person there speaking to your politicians so they can see they can put a face

Not just a piece of paper, Not just a report. Yeah, um, really important stuff. Do you think? Um, so, like what? As a parent, as someone that you know, supports a disabled person

What do you think this inquiry needs to hear? What would you want to be telling the inquiry about the experiences of people and their families during the covid pandemic. I think I think the biggest thing is this inquiry needs to hear and see people I've been through these difficult times and the difficult lives they lead, not just looking at their reports looking at their pieces of paper because not everyone is captured. So if you looked at, um, mental health, for instance community mental health, there's 1000 people there

My son doesn't fit in there. He needs it. But you can't get access

So you're gonna lose a lot of people. You're not capturing the whole picture. But listen to real life people not just get Look

Look at the quality of data, not just the quantitative. What do you think that qualitative data would be telling them? Disabled people and or their carers know what works for them? What doesn't work for them? They know how to save your money. Truthfully, you know, let let's be honest

All comes down to money. It shouldn't, but it does. You know what works for us? You put things in place that doesn't work

It's gonna cost you more money at the end of the day. Listen to people they will help you and they will lead you on the right road. Thank you

Is there anything else you wanna share about your experiences of covid? I think the hidden experiences There's lots. There's lots of talking. There's never any feedback

So for this inquiry, it's really interesting that a lot of people will give their stories and they will talk on and honestly, are they gonna feed back what they did with that? How they felt about what was said, what? You know what the report meant to them, how they're going to implement changes in the future. God forbid. But if anything would happen, feedback is really, really important to show the value that people are giving up their time and energy because it's really hard to talk about difficult things

It takes a lot of emotional energy. Um, and I think feeding back to them shows value in what they're saying. But also, if they're going to implement changes, or if they can't, why can't they? That's OK

Just let us know why. Yeah, see a night. Thanks, Joe

I'm gonna stop the recording there. If you don't have anything else.

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