Podcast: Care, relationships and why the Budget fails disabled people

Kerry Thompson: I would like to see more help for disabled people. I would like it to be that we're not at the bottom of the totem pole. I would like to see that social care is going to be looked at and is going to be helped. And I would like to see – that instead of them having so much talk around, essentially, what they think we need – that they ask us to the table.

[Intro]

Isaac Corrick: Hello and welcome to the Disability Download – brought to you by the disability charity, Leonard Cheshire. I'm Isaac Corrick. And on this podcast we respond to current topics, share stories and open up discussion about disability. 

Today our host Nick speaks with our guest Kerry Thompson, a disability campaigner living with muscular dystrophy. In the episode they talk about the spring Budget and explore the crucial aspects required for a robustly-funded social care system. Tune in as Kerry and Nick dissect the implications, challenges and necessary reforms vital for ensuring a brighter future for social care in our communities.

[Main podcast]

Nick Bishop: So I'm here with Kerry Thompson, disability campaigner. Kerry, thanks for joining us.

Kerry Thompson: Hello, Nick. Thank you for having me.

Nick: So Kerry, can you give a brief introduction and tell listeners a bit about yourself?

Kerry: Hi everyone. My name is Kerry Thompson. I live in the land of the roundabouts and the concrete cows. So sunny Milton Keynes! I am 43. I have a rare form of muscular dystrophy – a progressive muscle-wasting condition. 

I live with my husband. And we live in a Habinteg home, which is purposely built for disabled people. So essentially my doors are wide enough my rooms are wide enough so I live a very independent life. I am a campaigner, I'm an advocate. I write my own blog. And I have my fingers in several pies.

Nick: Brilliant. Thank you, Kerry. So on 6 March in Parliament, Chancellor of the Exchequer Jeremy Hunt gave his spring Budget speech. What is your reaction to the Budget? And do you think it delivered for disabled people?

Kerry: The easiest answer I can give is no. The fact that there is no mention in the Budget for disabled people... It blows my mind that yet again we're sat here having conversations and the fact is that we are the very last to be thought of. We could have been included in the Budget. There is a very small snippet mentioned of the Household Support Fund, which could have been better explained. It could be better planned. It could be better distributed.

Nick: Yep. We agree. So, yeah. The Household Support Fund gives support from local authorities to people on low incomes. So we'd advise to check if you're eligible. As you rightly say, there was no mention of any targeted support for disabled people. And disabled people are often high energy users. And quite a few people like yourself will need heating throughout the year. Can you explain a bit more about this?

Kerry: I… yeah… I absolutely am living for the summer months… when I don't have to put my heating on! I'm still so very worried at turning my heating on that I put it on boost so it's on for probably 30 minutes at a time… to heat it up to when I feel warm so then I can turn it back off again. And this is all down to the fact that my muscles, because of muscular dystrophy, don't work the same way as most people’s [muscles]. I feel the cold so quickly. 

My house can be 19° and I feel it. And I'm cold: my nose is cold, my muscles don't want to work, my body doesn't want to work. So I'm still very consciously watching how much electricity I use because I have a profiling [electric, rising] bed, I need to charge my wheelchair. I have a chair that I sit in at the night time that's electric that needs powering. So everything that I need – my work desk is electric because it goes up and down. So the majority of all the equipment that I need – [it all] needs charging. So it's a case of: do I put the heating on and stay warm? Or do I charge my wheelchair?

Nick: That's really difficult. So how do you make those choices? And also, are you noticing a big increase in your bills as well?

Kerry: Yes. Sometimes when I wake up in the morning, my home is below 18°… and there's no way that I would be able to get up and function. So I have to heat it to a temperature that is more comfortable for me. And that's on a boost. And it's done, you know, 30 minutes at a time, just so I can feel the warm air. 

And my food bills have gone up and I'm a diabetic… so I'm a type 2 diabetic as well. So there's certain foods that I can't eat. I don't eat white bread. I can't eat white pasta. I can't… you know… carbohydrates, for me, is a no-no. I eat a small amount of carbohydrates but not a huge amount. So everything's pretty much fresh. And that becomes expensive. So again, you know, with the extra cost, it's hard to decide what is the best course of action.

Nick: Yeah. So you're really having to make tough choices when it comes to food shopping.

Kerry: Yeah, absolutely.

Nick: And sadly, also social care remains underfunded and there was no mention of that at all in Jeremy Hunt's Budget speech. Can you explain, as a disabled person, why it's so vital that social care gets long-term funding?

Kerry: I think it's very apparent that social care is broken. And there needs to be sufficient changes within the social care sector for people. We're living in a community that lives longer. And there are some great social care aspects. But most of it is broken, and it's hugely important. If I didn't have social care, I wouldn't be as independent as I am. And I think there are many people out there that are falling through the cracks, that are in situations they don't know how to get out of…. because they're underfunded, they can't find carers… So I think it was huge. It was a missed opportunity.

Nick: Yep.

Kerry: For Jeremy Hunt to miss… that key element of social care that needs a huge amount of work and a huge amount of money. You know, it does need some serious looking at. There are some people that deserve more in their care package. But because the money isn't there, they're unable to fight for more of what they're entitled to.

I met a lady and she was a beautiful human being inside and out. And we were, generally, having a chat and getting to know each other. And she was saying to me, you know, the social hours that she was allocated. And she had less than I was allocated. And it blew my mind because the type of disability that she had, she needed to have 24-hour care. And it just… I didn't quite understand why she hadn't been offered, or – why a professional hadn't given her – the dignity and the respect and the care element that she was entitled to. And it only comes down to how much social care funding is available.

Nick: So you've explained a bit about the impact of the social care system on your life. And I recall you saying in a Leonard Cheshire article, which we'll put in the show notes, how your husband provides most of your care. Is that right?

Kerry: Yes.

Nick: So do you get the hours that that you need at the moment?

Kerry: No. I am in the middle at the moment of fighting for more care hours. Because I do have two PAs. They work Monday to Friday. And they do 8-hour shifts. One does 3 days, another does 2. And then my husband takes over after that. And the fact that, essentially I'm like an adult version of someone… that can talk, that can't move themselves. And when I need turning at night…. you obviously need to go to the toilet as well… My husband doesn't sleep a huge amount because I'm… I'm very demanding. If I could do it myself, 100% I would. But I am… I will hold my hands up and say I'm a very demanding wife. And I'm sure every husband out there would wish that their wife would openly turn around and say that. But I do.

You know, I can't get a drink myself if I'm thirsty. I can't go to the toilet myself if I need the toilet. I .. you know. If I'm cold, I can't regulate my heat in bed because I… you know, I can't get up and get another blanket. So I'm constantly having to wake my husband who essentially needs sleep as well to function – to do the things that I need doing because I can't physically do it myself. So there are times when he's so physically tired and you can see the frustration in his face… not because he's tired, but because he wants to be able to help and he feels it's his job to help. And I love him very much for that. But sometimes he needs that respite as well. 

He's not able to go and watch football matches. He's not able to, you know, relax and watch a movie because I sometimes constantly interrupt that movie. So that time that he has to himself – nine times out of 10, I'm sending him a text message saying: ‘I need your help.’ ‘Can I have this?’ ‘Can I have that?’ So I am in the middle of, you know, another fight for more hours so my husband is able to at least have a couple of days to himself to do what he wants to do: whether it's going to sleep, whether it's visiting his brother and going to watch a football match… just something for him.

Nick: Yeah, sure. So you don't want your husband to have to be providing that much… that much support?

Kerry: I think it's important to have a relationship. You know, we are married. It's important to have that marital relationship. I think it's very easy for… Every marriage is different and every marriage is a struggle sometimes. And I think adding the care aspect into our marriage – sometimes you can lose that spark. And I think sometimes… Yes, we, you know, we have a great relationship and we laugh and joke with each other. But I think sometimes when the seriousness comes into it of the needs that need to be met for me – and the fact that we have a, you know, a marriage – [it all] can sometimes be blurred. And you can feel like you are just being a carer… Or I can feel like I'm not his wife and I'm just… not a burden but, again, demanding. I'm demanding far too much of him. I don't know if it's the same for everyone, but I know it's hard work. Marriage is hard work but adding that care element makes it even harder.

Nick: Yeah. And so you're saying that if you got… if you got better care support, that would make things… easier for both of you?

Kerry: Yeah. I think that time away from each other is hugely important because you miss each other. You know. It… It sounds very cliché. But sometimes [it’s] that being away from each other and coming back and having that silly question of: “So how was your day, dear?”

Nick: Yes.

Kerry: You know. We don't have that. You know. He can't come to me and say: “oh, this happened to me today.” Or I can't… you know… I don't turn around to him [and say]: “Oh. You'll never guess what happened to me today.” We don't have that element because he's around all the time.

Nick: Yeah. Yeah. And, um… What does good care enable you to do? The good support that you do get… what does that help you to do?

Kerry: It helps me… plan world domination!

Nick: [Laughs]

Kerry: It helps have my independence. It helps me do things socially that I…. I wouldn't essentially be able to. And it helps me get up – helps me get up in the morning. It helps me have a shower, helps me go to the toilet. It helps me have food and drink. And it helps me do social activities like go to the cinema or go to a campaign meeting. 

Do things with Leonard Cheshire like this, for instance. If there was nobody around to turn my laptop on, to put my headset on… I wouldn't be able to do things like this. I wouldn't be able to go food shopping or go clothes shopping…. or just generally go for a lovely walk in some of the beautiful parts of Milton Keynes that we have. I mean, I'm literally 5 minutes away from a beautiful park that's run by the Parks Trust. And it's such a beautiful walk but I couldn't do it on my own because I run the risk of… if I drop my arm off the side of my wheelchair, I can't pick it back up again. Whereas if there's somebody with me, it gives me the independence to do things like that and. So this social care is so hugely important and vital for me to live a happy, healthy, independent life.

Nick: Absolutely.

Kerry: Plus obviously take world domination.

Nick: Of course. And the next question is how would a better-funded social care system help you do all of those things and more? Maybe…. maybe it wouldn't help with the world domination bit… but maybe it would! Yeah. So how would a better funded social care system help you do all the things you like to do even more?

Kerry: I think a better-funded social care system would bring more independence for a lot more people, not just myself. I have three hours of social activities. So upon the 8 hours that my girls, my PAs have…. on top of that aspect, I have 3 hours of social [activity support]. If I was given more social hours, I would be able to enjoy the simple things in life that most people take for granted – like going to the cinema, going for a walk. You know. 

Sometimes I have to sacrifice my daily routine – like a shower, for instance, or a hair wash, or doing my exercises – because I mentally need to be able to go and do something fun, do something that benefits my mental health as well as my physical health. So I think on the aspect of a better funded social care [system], it would give more of an opportunity for people… to not just have the element of independence of being able to get up and live the day-to-day life that most people take for granted, but the mental well-being and the physical well-being that sometimes gets missed because you have to prioritise what's important.

Nick: Yeah. I mean… You were saying there, effectively, that sometimes you have to choose between having a shower and going out and doing something.

Kerry: Yeah. Absolutely. I mean, I have to sometimes gather up social hours to be able to go to a hospital appointment. I mean, I live in the land of the roundabouts and the concrete cows – Milton Keynes – and my hospital isn't always the local hospital. I have to go, you know, at least an hour outside of Milton Keynes for the majority of my hospital appointments. But that is an all day event, You know… it takes just over an hour to get there. Then you have your appointment. Then that can… you know… you have the waiting time. 

Then you have the coming back. So again I'm missing key elements to my care that I need day-to-day [in order] to be able to go to an appointment that is for my respiratory [health]. That's again hugely important because I need my cough assist [machine] every single day. I need my ventilator every single day. So… again… it's… You have to prioritise what is more important to you, and then sometimes those eight hours just disappear.

Nick: So… final question. Ahead of the general election in the UK later this year, political parties will be putting together their manifestos. So we'll see some of their policy commitments to voters. What would you like to see in there that will make things better for disabled people?

Kerry: I would like to see more help for disabled people. I would like it to be that we're not at the bottom of the totem pole. I would like to see that social care is going to be looked at and is going to be helped. And I would like to see – that instead of them having so much talk around, essentially, what they think we need – that they ask us to the table. You know. The housing crisis, for instance – that needs looking at as well. You know. The care system crisis – that needs looking at. So it would be nice to see that there is some form of element, within their manifestos and their campaigns, that is targeting what's needed for disabled people and their families.

Nick: Well, thank you so much for all of your time and all of your really fascinating answers there. We really appreciate it.

Kerry: You’re very welcome.

Nick: And we wish you all the best. Thank you so much for joining us on the Disability Download.

Kerry: Yes, thank you very much for having me.

Nick: Thanks, Kerry.

Kerry: Thanks. Bye.

[Outro]

Isaac: Thanks to Nick and Kerry for an eye-opening, thought-provoking and really raw discussion. We always love to hear from our listeners. So do get in contact by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram @LeonardCheshire. If there's a topic or a guest you'd like to hear on our podcast, do reach out and let us know. And don't forget to like, share and subscribe to the podcast. Until next time, everyone! I'm Isaac and this has been the Disability Download.