Emily Kenway - Author of 'Who Cares'

Are we 'freaked out' by the topic of care?

What's does community have to do with caring for others? And where do we, as individuals, and 'the system' play a role? These are all questions Suzanne tackles with Emily Kenway, esteemed author of 'Who Cares: the hidden crisis of caregiving and how we solve it'. Emily takes us through some of the key themes of her book - which, through unflinching investigation, asks why we have a 'care crisis'. Suzanne asks for Emily's 'rallying cry' to decision makers influencing carer support, and together they speak about their experiences of caring for loved ones.

Be sure to listen to this great episode, and give 'Who Cares' a read too - you can find it online here: https://geni.us/whocares

• (00:00) - Welcome to Carer Catalysts
• (00:49) - What's coming up in this episode?
• (02:02) - Introducing Emily Kenway: Author of 'Who Cares'
• (06:18) - The experience of sharing your caring journey
• (09:00) - The benefits, challenges and importance of co-production
• (14:53) - Are things getting better or worse?
• (18:23) - Are we freaked out by the topic of caring? Is it a personal or systemic responsibility?
• (29:12) - Is more funding the answer? What role can community play?
• (41:00) - Developing collective care or Caring As Infrastructure
• (47:33) - The difference virtual communities can make
• (52:10) - What would be your rallying cry to commissioners?
• (59:19) - The Mobilise take on the conversation with Emily
• (00:00) - Chapter 13

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The views of guests participating in this podcast are their own and may not represent the views of any affiliated organisation. The content is provided for information purposes only and does not constitute financial, medical or legal advice.

Creators & Guests

Host

James Townsend

James co-founded Mobilise in 2019, on a mission to transform the support available to the UK's 11 million unpaid carers. He supports his mother, who has MS.

Host

Suzanne Bourne

Suzanne is a Carer's Coach and Co-Founder of Mobilise, heading up a service that provides scalable digital support, 1-1 coaching, virtual cuppas and an online peer support community for unpaid carers. She is a carer for her husband, Matt.

Guest

Emily Kenway

Writer and researcher. Orwell finalist book 'Who Cares: the hidden crisis of caregiving, and how we solve it' is out now.

What is Carer Catalysts?

Tune in to Carer Catalysts - a podcast connecting innovators for unpaid carers.

There's a sense of hope bubbling away in the world of carer support. There's a hope that right now we're bringing new, exciting, innovative solutions that could be truly transformative - helping us all to care, and thrive.

But innovation is no mean feat. That's why we've been speaking with the people who are catalysing the change. These are leaders in carer support whose journeys and experiences have brought them to the forefront of innovation for the UK's 10.6 million unpaid carers. They're here, on this podcast, to help share a bold vision. And to hopefully inspire you too.

Carer Catalysts is brought to you by Suzanne Bourne and James Townsend - Co-Founders of Mobilise, an innovative digital service that reaches and supports hundreds of thousands of unpaid carers.

0:02
Hello and welcome to Carer Catalysts, a podcast that connects innovators for unpaid carers.

0:08
I'm Suzanne Co-founder and Head of Carer Support at Mobilise.

0:12
I'm also caring for my husband, Matt, who has young onset Parkinson's.

0:16
And I'm James CEO and Co-Founder of Mobilise.

0:20
But perhaps more importantly, I'm son to my mum, who has MS and at Mobilise we believe that with innovation, technology and a bold vision, we can help carers to thrive.

0:30
And we're bringing the same energy to this pod hearing from inspiring leaders in adult social care from across the country listening to their stories about making transformational change for unpaid carers.

0:41
So sit back, grab a cup of tea and join us for Carer Catalysts brought to you by Mobilise.

0:48
Here we go.

0:49
Suzanne, A new episode.

0:50
Now you've been talking to Emily Kenway.

0:53
Emily Kenway is very effective at getting around the, , the carer support sector.

0:58
So I've seen lots of events and podcasts where she's been talking.

1:01
, how was the conversation with Emily and what was different about this conversation?

1:06
Oh, it was great.

1:07
I really enjoyed it.

1:08
And yes, I've listened to a lot of podcasts that she'd done previously and was interested to see how it would be different.

1:14
And so as well as sharing, you know, she's got an amazing personal lived experience of caring for other people she knows, you know, and has been speaking to them about caring.

1:24
But also she had such a passion that we all understand how caring is gonna impact our lives.

1:31
And this is normal.

1:32
This is part of our lives.

1:33
We need to embrace it.

1:34
And I really love that it really chimed with me.

1:37
But what?

1:37
Where we really ended up was a sense of some really practical suggestions and ideas about innovation and local innovation.

1:46
You know, thinking about that at local authority level and how carers can be involved to really start up that innovation right from the very beginning.

1:54
So, yeah, I really encourage people to have a listen cos I think there's lots to learn in here.

1:59
Brilliant.

2:00
Let's play the clip.

2:01
Lovely.

2:02
So Emily Kenway welcome, Emily.

2:05
You're an experienced campaigner, a writer on a range of social issues, particularly modern slavery.

2:11
And recently you've written a book.

2:13
Who cares?

2:14
That's featuring your own experience of caring as well as looking into some of the solutions and some of the way forward around the topic of caring, which is really exciting to hear about a big welcome to you.

2:25
Thank you so much for having me.

2:27
Just lovely to have you with us and really excited to talk to you.

2:30
We've been reading the book and , listening to other podcasts as well and hearing about some of your work so really excited to open up a conversation about, , unpaid, caring and, , the future of how that might look. Tell us.

2:42
First of all, tell us a bit about your own experience of caring and how that motivated you for writing the book.

2:49
Well , so my mom had cancer.

2:51
She actually had three types of cancer across four years.

2:54
, and she within that had lots of different kinds of treatments.

2:59
, chemotherapy transplants.

3:01
And those treatments themselves caused a lot of impairments.

3:05
, lots of side effects, lots of permanent impairments in the span of life she had, and she was single.

3:13
, so I was her primary carer.

3:16
She also didn't really like having outsiders around like, you know, people.

3:20
She didn't know.

3:21
IE paid care workers.

3:22
Hence, I did a lot of the hands on stuff and she passed away in September 2020.

3:28
And, , through the years of kind of suddenly finding myself in this world, right of sickness and hospitals and unpredictability, I, , realised that sort of in every street in every neighbourhood, you know, in in every town there were all these people doing this thing as well that I had never thought about until it was my turn, as as is very common and that it was unbelievably difficult.

3:57
But it didn't have to be that difficult, right?

4:00
I could really see that it was always going to be hard, right, because someone you love is struggling.

4:06
That's never easy.

4:08
, but there were all these kinds of circumstances surrounding it that seem to make it so much more isolating, so much more difficult, so unsupported, et cetera.

4:20
And I really wanted to put that on the map, right?

4:23
I could see that in debates about the care crisis.

4:28
You know, as it's called, that it was primarily, , being talked about as an issue for paid care workers.

4:35
So obviously their conditions are often problematic, et cetera.

4:38
And , what care receivers should have, Which is, of course, a very important topic.

4:44
But I felt that this third stakeholder group was just missing from a lot of the conversations.

4:49
And I see it all the time Now, you know, when I say the statistics to people of how many people are carers, they are absolutely shocked compared with how many paid care workers there are or how many people are in care homes.

5:00
So I wanted to put a book out there.

5:03
That was not a kind of, , you know , technocratic policy book, but something for everyone, , to say, like, this is common.

5:14
This is normal, but it's really unders supported, and we have to rearrange things.

5:19
, and I wanted to make sure that carers felt witnessed in their experience in it as well.

5:26
So it does tell my story as as you said, but it's a definitely a kind of minor theme in the book.

5:31
, because I've purposely, , in interviewed carers from around the world who are doing different kinds of care.

5:37
You know, caring for a mother with cancer is one permutation, and I recognise that , and I went on lots of deep dives into amazing research to sort of work out what's really going on.

5:48
Yeah, and it's It's so powerful when people share their story and hearing from other carers, you know what you know that really sets the scene for the book.

5:56
And I think also your your personal lived experience kind of really comes through in the book, not just in your telling of the story, but in how you've, , sort of spoken to other carers and researched the project, the topic and how passionate you are about the topic.

6:11
How has it been for you, obviously in the book, but also in sort of subsequent, , podcasts and interviews you've done and media work that you've done.

6:18
You're sharing what was a really huge and complex and challenging experience for you.

6:23
How has that been for you to to share that?

6:27
It's been, , it's been really interesting.

6:30
In some ways, it's been wonderful.

6:32
You know, I feel incredibly fortunate to be a writer, and therefore to have been able to turn something which, you know, as you can tell from the book, was extremely difficult in lots of ways into, , something that I get to sort of hold up, you know, an accomplishment of sorts.

6:48
And that is something I'm very grateful for.

6:51
, when the book, , the first kind of two or three months of it coming out it came out in April this year.

6:58
I had a real onslaught of D MS emails, et cetera, from people in the US where it came out as well and in the UK.

7:06
And that was, , that was just, you know, heartbreaking.

7:10
It's not It's not that I don't know, obviously about carers and care.

7:15
, but it's particularly the older old, you know, the kind of people in the eighties and so on, emailing me from somewhere in the US that I've, like, never heard of, you know, And they've seen it at their local library.

7:24
And they're just emailing to say thank you for talking about this because I've never, ever felt seen.

7:30
And that was, , you know, moving and heartbreaking and and everything like that.

7:36
, I'm quite careful about you know how much I'll talk specifically about what happened.

7:43
I mean, I will talk about it, but obviously I'm always kind of being a bit protective, but it has been.

7:48
It has taken a toll.

7:49
Of course, you know it does doing that.

7:51
But I think it's I think it's so important because I see so many of the policy discussions about care and the media discussion is really not understanding it properly.

8:01
Right?

8:02
, And so if we if we don't turn our experience into knowledge into, you know, then we carry on with the same.

8:09
And many people who are carers are caring for a lot longer than I was are caring indefinitely if it's for Children with additional needs, you know.

8:18
And so obviously I wish that my mom's cancer hadn't become terminal.

8:22
, but the fact that I'm no longer a carer makes me wish to use the energy that I do have now that I did not have then to speak about the topic.

8:34
Yeah, yeah, and so quite often, yes, a bereaved carer has has that space to do that a bit more as well.

8:40
, but lovely to hear that you've it's really connected you with other people all over the world.

8:44
You know, there's there's different people in different situations.

8:48
, and as carers.

8:49
Quite often when we go into sort of that area of peer support, we're kind of opening ourselves up to that to other people's situations, and we learn a lot from that as well.

8:58
But it can be quite tough to deal with, too.

9:00
And I wonder when we think about co production, we know co production is a good thing.

9:04
We know we need to involve carers in the work that we're doing to build serv the services that are there to help them.

9:10
It's really valuable to get them involved, but it's it's tough as well, isn't it?

9:14
You know, we're asking people who might be short on time and energy and quite often that that getting involved involves sharing their story and exposing them to other people's stories, too.

9:24
So how does how does that work?

9:27
How can that work well in sort of co production when we're asking carers to get involved?

9:31
Yeah, well, I'm you know, there's lots written about this, and it's There's also a lot written on a sort of similar area, which is peer research in in academia, right, which is people with lived experience leading research into topics and often those overlap.

9:45
So, I mean, you could spend you could do, like eight PhD S just reading the literature that's out there on how to do it.

9:51
Well, now, of course, with carers specifically, as you allude to, you have to think about energy, levels, time, predictability of their lives, like all of these things, you know?

10:01
And I can't imagine if I'd been asked to be involved in something like that, I would have loved it.

10:06
And, , it would have needed to be designed in a very specific way for me to be able to engage with it or to know I could, right, because I truly didn't know what was going to happen from one week to the next because of various of her, , symptoms around the the the side effects and so on.

10:23
so So there's that aspect.

10:26
I think for me, one of the most important things is that, , whether or not the process is is authentic, right?

10:36
It's like, you know, as a person, if you're going into a space where you're you're kind of being, it's it's tokenistic, even if it's well meaning, you know.

10:46
And there's already this very narrow parameters for what's acceptable to say is needed in that space.

10:52
Right?

10:53
So there's all these kind of received assumptions about care, and then you're brought.

10:58
You're plugged into that, and if you're saying something completely different, that's kind of not necessarily appreciated.

11:03
So I think we have to be really conscious that co production really starts from the earliest stage of, like, What is it even that we're talking about here?

11:11
Not We've decided that.

11:13
Now tell us your pain.

11:15
Right?

11:16
, and the other thing I'd say is, you know, and it's it's something that gets talked about in lots of areas related to this is who is in the professional roles.

11:27
And if they don't have any caring experience, what's going on with your hiring practises now?

11:31
I have never worked for a council.

11:33
OK, so I, I honestly have no idea what recruitment looks like for councils.

11:38
But obviously a lot of people have been or are carers, statistically right and a lot of carers are also working at the same time.

11:46
So if you're running a team that is engaging with real life carers, why are none of your team also real life carers.

11:52
If they're not, because I'd suggest that you're gonna get a better outcome, you're gonna get better knowledge and insight from the carers that are coming in.

12:01
If there's someone that has some understanding of what they might be experiencing, yeah, and then that's just naturally in the room.

12:08
And so important is that when I share my experiences of caring that, as you say, it's limited to what I've experienced.

12:15
But because I'm a carer, I hang out with other carers and I hear their stories and you get kind of soaked in that.

12:20
And I think that's the benefit you get from either.

12:23
Just whether it's one carer in the room.

12:24
There's never just one carer in the room.

12:26
There's all the other carers they've interacted with that they're bringing their stories to and their experiences to.

12:31
So yeah, really important.

12:33
Another thing I was always very passionate about.

12:35
If if carers are brought in, you know, if there's a collective of carers to come into a focus group or something, give them the best possible biscuits.

12:42
I think that's a nice yeah, exactly.

12:49
Understand the the stresses that are happening.

12:52
Don't try and squeeze loads of stuff into a short time period because guess that.

12:56
Guess what?

12:56
That's the rest of our life as well, you know?

12:59
And those interventions can be therapeutic, too.

13:01
You know, you're introducing to other people that a great network and connections, and quite often people come out feeling like I've done something useful.

13:07
Today, I contributed to something, and it's great to get that feeling as well.

13:11
So you know, it could be really positive as well.

13:13
But that design is important.

13:15
And, as you say, the flexibility as well that things might change.

13:18
People might not be able to come, and they need to be able to say, Sorry, it's not working today.

13:22
It's not happening today.

13:23
Yeah, the other thing I just mentioned, , because I have been working on this on a on a separate project, , around engaging youth in research.

13:32
If you're working with young carers, , there are really interesting programmes that are fairly new, but over the last handle of years that have developed that are looking at ways to give, , young people who are coming in as people with lived experience to research or co production credentials like credits, , that they can then use to access further education and so on.

13:52
And that's, you know, yes, we can.

13:55
I truly agree that if you're coming in and you're just sharing your experience and you're not being paid and you're not getting, you know, a credential of any sort, that's still incredibly valuable.

14:05
And I would have felt that at the time I you know, I filled in the carers U K's, , you know, State of caring survey loyally every year because I wanted my experience to be heard somehow.

14:17
, but, you know, actually giving young carers who've obviously gonna have had their education take a toll and so on that that concrete reward is a really interesting kind of development and something that deserves more attention.

14:30
Lovely and fairly straightforward.

14:31
I can I can hear people scribbling that tip down already like, yes, I can act in that because, yeah, young carers is a real area that people are trying to get more engagement in.

14:40
And it and it's difficult.

14:41
, so yeah, Brilliant.

14:43
That's a love.

14:43
Lovely tips already coming through.

14:45
Thank you.

14:45
People can really act on that.

14:47
So we recognised in the book that carers just weren't getting the attention they deserve in the public, in the media.

14:53
But and most importantly, in sort of those policy discussions since writing the book and sort of since you know the covid situation, do you feel things are getting worse?

15:03
Is there is there?

15:04
Is it going worse or is it getting better?

15:06
What's your sense?

15:08
I mean, since covid I don't know, you know, covid.

15:11
It was such a moment of possibility for reorienting to pay attention, to care and to the that kind of reality.

15:21
You know, I just remember seeing newspaper column after newspaper column from parents from mothers usually saying, You know, Oh my God, my Children are at home and I'm trying to work and thinking like Yes, of course, that's really difficult.

15:33
I fully respect that I don't have Children.

15:35
And guess what?

15:37
We've all been doing that all along.

15:39
Loads of us, you know who have complicated, caring situations are doing this insane.

15:43
Juggle all along before covid.

15:46
Now, I suppose I would wonder about this idea.

15:50
That policy is separate to the public and the media right, because policy responds to what's seen as salient right, That's politics, that is what politics does, , to a large extent.

16:01
And so I think that there's something here about, well, the work that you know organisations like yours are doing and and lots of organisations to continue to back this topic into the public domain.

16:16
You know, because the more people hear about something, the more they think it matters.

16:20
And when when you think about some of the topics that take up a huge amount, a huge amount of political and policy time, but actually pertain to a very small number of people compared to care that kind of tells us something, So we need to keep generating these stories.

16:35
And if you look at successful social justice campaigns over the years, a huge amount of that is is getting those real stories out those investigations and so on and keeping that going.

16:46
And I see that a lot more about paid care workers than unpaid carers, right?

16:52
There's been amazing investigative journalism and conditions of paid care workers, but not so much on this topic.

17:00
, I think that there are kind of two broad reasons why all these spaces are really neglecting us.

17:05
OK?

17:06
And I think The first is something that I use as a kind of linchpin in the book, which is that we think about care as a sector now.

17:14
Obviously, that's true in lots of ways, right?

17:17
It's a sector people have to commission for that sector.

17:19
People work in that sector and so on.

17:22
But it's also a mindset right where it's something that is sectioned off from everything else.

17:28
It's separate to everything else.

17:29
It's not embedded in the daily nature of life.

17:33
So if you don't work in the adult social care sector, then you have nothing to do with care.

17:40
Right?

17:41
, you're a hairdresser or an accountant, or whatever it is, you're not a carer.

17:45
It's nothing to do with you.

17:46
And that's partly down to this, , cultural pathologising of vulnerability we have, right?

17:53
It's not.

17:54
It's not a compliment to be called needy, even though we're all needy, including those of us who are fortunate enough not to have impairments at the moment.

18:01
We're all needy.

18:02
We need an income.

18:03
We need heating, et cetera.

18:05
You know.

18:05
So it's this, , this fundamental wish not to have to look at it, which, , is the reason why I included a chapter in the book on psychology in Relation to Care, which is something I've never seen in any other you know, book or essay or anything on care.

18:23
Having been a carer, it was so obvious to me that people were freaked out by the topic.

18:28
And, yes, I'm talking about people I encountered through my life.

18:31
But I believe that it's true for politicians and policy people as well.

18:35
Right?

18:35
You're talking about something that can be beautiful, but also it is very hard and involves death and and illness and vulnerability.

18:43
So I think there's, , a mindset issue.

18:46
Actually, that is each of ours to carry as well as a systemic thing.

18:51
And it's really easy to ignore me saying that right?

18:54
And to just be like, Well, I don't think that, but truly, , how many people are trying to avoid the topic, even if they're working on it, right?

19:01
, and the other thing is, , the care challenge we have today, right?

19:08
With far more people having certain illnesses dementia, Parkinson's and so on.

19:13
And, , people living a lot longer with impairments of all sorts.

19:18
, does not it cannot be accommodated easily by capitalism.

19:23
OK, so capitalism is at root about kind of what?

19:27
What sort of a productive work, right.

19:29
Your waged work, your employment, whereas what we're talking about is what's happening, You know, in the home, it's the things you're not getting a wage for.

19:39
They don't produce goods that then sell for profit.

19:42
And so it historically care has been this, like externality to capitalism, right?

19:48
It's just ignored, right?

19:50
And so women more women didn't work.

19:52
So that was just what they did while the men did the work capital W.

19:58
Now, of course, most women are working, you know, we need Well, we need, like, eight income households, but we need two income households, you know, and, and it doesn't work anymore.

20:10
You know, if you look at that structure, it doesn't work.

20:12
So that creates a really tricky issue for people working on policy, right, because the jigsaw pieces are very hard to put together.

20:21
And that's why in the book, you know, I'm kind of saying we really need a new way of thinking about this because, you know, this equation doesn't add up, guys, it's kind of obvious and and that's obvious at a systemic level.

20:33
But when you're a carer, it's obvious at a deeply personal level, , that you can't look away from once.

20:40
You understand?

20:41
, so I think I think there's kind of big, big reasons for this.

20:46
Yeah, fantastic.

20:47
And just that sense of There's something in all of our thinking that needs to shift and change because recognising how normal caring is.

20:56
And it's not just another problem for the government to solve.

21:00
It's it's there for all of us.

21:02
Yes, and this is what happens all the time when I'm doing, you know, book related things.

21:08
People say we talk about carers, people say, who are the carers, et cetera, et cetera, and, , to different degrees of bolshy USS, depending on the person I'm talking to and whether they seem to care about the topic, you know, I always say it's you.

21:23
You You're the carer.

21:24
Because, you know, the reality is even if if you haven't been already and you're not, now you probably will be in the future, right?

21:30
Or you're gonna be a care receiver like good luck having a life that doesn't involve either of those sides.

21:36
And so if every single person working in policy working in politics wasn't like, what can I do for those people over there who sometimes we bring in to talk about what we can do for them, but was instead like, What if it's me in three months time?

21:54
What do I need?

21:56
I think that that is the perspective we have to think through.

22:00
And it scares people, you know.

22:02
I see it, I go.

22:03
I was talking to a think tank recently who, you know, policy people.

22:07
And talking about care in this way is really frightening because it is much more comfortable to be like, Well, social care needs X amount, more funding and then it's nothing to do with you and what might happen in your life.

22:18
Yeah, powerful stuff and something we can take into every conversation.

22:23
Every meeting, that starting point of this is us.

22:26
We're talking about, not a group of other people.

22:29
This is us in the future.

22:30
And hopefully there's C, current carers in the room with lived experience as well.

22:34
But people, everyone has that potential to sit and think about what's gonna happen to my parents and I when we do a lot of talks, I do that.

22:42
I'm really sorry.

22:43
I'm gonna take you into this awful place of thinking.

22:45
What happens when my parents get ill?

22:47
Have you talked about that?

22:48
What's that?

22:48
What's that gonna look like?

22:50
And also, as you say, you know, families nowadays are very different, aren't they?

22:54
You know, it's it's not just the kind of very simple nuclear family.

22:57
It's the people that we love, the people that are around us and how how that will all work together, which is that's a big, big bit you cover in the book about kinship as well, how all that is shifting and the the killing of people I love.

23:09
I love how you talk about that and that recognises that families have shifted.

23:14
The people that we call family are are different now and that we have some ownership and potential around that as well.

23:20
Some agency to change that and impact that as well.

23:23
That's quite casual.

23:24
Yeah, a huge, a huge amount of potential in that I think it's a very exciting area and one that I intend to spend more time on in the future.

23:32
, I think that families, they're changing and they're not changing.

23:36
It's kind of weird.

23:37
It's like, , as I said, like, far more women work full time than historically and out of the home.

23:44
Then historically, so that has changed.

23:46
What we think the family is right.

23:48
This unit, where there was one person at home doing all that stuff and one person at work.

23:52
But also fewer Children are being born.

23:54
We've got the lowest birth rate for years.

23:56
At the moment.

23:57
In the UK, Children tend to live much further away from their parents.

24:01
Much higher divorce rate means much more single older adults, all of these things.

24:05
So there's this, like alleged family structure.

24:08
That's the unit of care, the kind of biological, marital family that doesn't exist in the same way anymore.

24:14
And I'm sure that's only going to escalate right When I think about my peers, I just don't see that changing and you know it's not going to go back in time and then additionally, , we have these ideas like you say about kind of reimagining the family and what would it mean if we cultivated kinship, which you know is about reciprocity and care and obligation with people who are not biologically maritally adaptively related to us.

24:43
What does that look like?

24:44
And it's really interesting examples I give in the book, which just do truly excite me.

24:49
But we definitely need to do a lot more thinking about that a lot more, , catalysing of that to create a new version of family that's like built for for now, for the 21st century.

25:02
It's not 1950 you know, true, true and and thinking about, , you know, you've experienced through the book and through the the research that you've done people, , carers on the receiving end of support or or getting involved in support, some of which works, some of which doesn't where you know, what does really great support look like for carers.

25:21
I know we talk about doing things with and alongside rather than to people.

25:26
I think you know that That seems to be a a really helpful shift that people are making.

25:30
But can you share some examples of what it looks like when carers are getting great support?

25:36
Well, what it looks like when carers are getting great support is for me the kind of knob of all of this, right, Because we can, you know, I won't do it, but we could.

25:45
Both of us rattle off statistics about carers today and mental health, physical health, financial health, all of these things, right?

25:52
And if it doesn't make your heart ache, you've got a problem.

25:56
, but it doesn't have to be like that.

26:00
And that's I think the knob of this is that if carers, , are truly supported and I come on to what that looks like then what we find is that care is, as I said earlier, often difficult, but incredibly important for for our species, actually.

26:16
And I do talk about this particularly in relation to ideas about technology being a kind of better replacement.

26:22
Usually, when people think about technology and care, they think about the care receivers and how it will be for them, which is obviously very important and interesting.

26:29
But what about the loss of the experience of being a carer at the moment?

26:35
That means the loss of a lot of difficulty, right?

26:37
00, no.

26:38
I can earn enough money, you know, , but actually, being a carer, there's loads of interesting research that I did a deep dive on a couple of months ago about the positive aspects of being a carer.

26:51
OK, Notwithstanding the difficulties, obviously I understand those, but that we learn so much from doing that.

26:58
You know, we cultivate empathy.

26:59
We learn to write, regulate our emotions.

27:02
We learn what feels like it matters in life.

27:05
We learn how to connect with people in the community better, you know, like I now I'm the only one.

27:12
I was the only one in my peer group who'd been a carer.

27:15
, I still am, but more of my friends have parents who are getting sick.

27:19
Now.

27:19
I'd say, , and I can talk to them about it.

27:23
I can give them advice about it and so on and so forth.

27:25
Right.

27:26
, these things actually do matter.

27:29
These things are much bigger than some of the policy questions.

27:34
These things are about what we want to be as human beings, so care.

27:38
You know, I don't I'm not going to do the like care as a hero thing because we all hate that.

27:42
But actually care as a function of humans is crucial, and that's what we can unleash if we get support, right?

27:51
Hm.

27:52
So for me, what does What does that support have to look like now?

27:58
I'm probably going to be annoying because I'm not gonna sidestep the systemic here.

28:03
Right?

28:03
First of all, we can do a lot now with the way that things are and I you know, I talk about that a lot in the book, and we've talked about this already.

28:12
There's loads of things that can happen now.

28:14
Actually, however, we we are working within scaffolding.

28:20
That is flawed, right?

28:22
We don't have workplace rights as carers.

28:25
We could have.

28:26
You know, you can obviously introduce them without the government doing a law to make you, in fact, one of my great joys as a friend who runs quite a large organisation, brought in paid carers leave after listening to the audiobook, which is just like, you know, those little moments.

28:39
You're like, Yes, , you know, So we don't have paid carers leave, you know, five days, , is the kind of normal working week, and actually, it needs to be shorter because we need more people in the pool of potential kin carers.

28:54
, we need money you know, we need an income as carers.

28:57
You cannot be putting people into poverty because someone they love got sick.

29:01
And I come back again to that thing of it.

29:03
Could be you, OK?

29:05
And like think about that.

29:07
And what is it that you need to have in place with that in mind?

29:12
You know, I kind of refuse not to to think about that, even with that scaffolding that is so shaky and so flawed, I do think there are lots of things we can do now that support carers and help unleash that, , that very important function.

29:28
And I think this is about looking at communities and supporting communities to develop, , practises that share care around.

29:39
Right.

29:40
And I am not suggesting that we don't need more funding for social care and that we should push everything back onto everyone who's in a cost of living crisis and so on.

29:49
I it can be misconstrued as that.

29:51
I think we need both, and so we saw in covid this mushrooming of mutual aid networks, right?

29:59
People stepping in to create not just to, like, knock on next door, but to create actual systems you know, and that has enormous potential for care.

30:12
Of course, it doesn't have potential for, like, going and washing someone you barely know, right?

30:17
But as I'm sure you know as well, you know, care is we could write down a list of all the things that are caring roles entailed in tasks.

30:27
Right.

30:28
And some of those are completely inappropriate for other people to do.

30:31
, you know, obviously there's the the, the preferences of the person receiving the care, of course, are the first and foremost thing, but a lot of those could be done or could be eased by having these community, , reciprocal practises.

30:48
You know, just I would have been so grateful to be able to go really slowly to the shops, you know, and not be like, Oh, my God.

30:58
I've got to rush doing everything or so grateful that when one of them, you know, million times my mom called me.

31:05
And I needed to leave work very quickly to go back and look after her because, you know, an infection was starting.

31:11
, that there could have been someone in in the neighbourhood who could have sat with her for an hour and, like, soothed her right as I tried to get across London and so on and so forth.

31:20
There are there are all sorts of things, and they sound really small.

31:23
I know they do, and they're not flashy.

31:25
And I think we're our culture is obsessed with like, Well, what's the app that's going to solve it?

31:31
You know, what's the brand of what I'm saying?

31:34
You know, and actually this this is not flashy, but it is doable, and there are really exciting models for doing it.

31:43
So I I profile one in the book that I think is absolutely genius, and I am finishing a PhD at the moment.

31:50
But I am wondering about trying to set one up after my PhD.

31:53
It's called Circle.

31:55
, Hillary Cotham created it.

31:57
Who you may right?

31:59
OK, I am a big fan as well.

32:01
I think she is one of the rare few who begins her process of problem solving from the people experiencing the problem and doesn't go in with a load of, , acceptable roots, right?

32:14
She really goes via what people are saying, and I think that's why she created something.

32:18
So what she calls radical and concrete, which I just adore.

32:23
, Circle is so simple.

32:26
It's basically a, , couple of phone lines, , run by a couple of staff and then AC RM system.

32:33
Right?

32:33
So, like a kind of big database, and people in the community can join, and they, they pay a small fee.

32:42
This was something they wanted to have a sense of ownership.

32:45
, back to the kind of friendly societies ideas of the past.

32:49
, it can be on a sliding scale.

32:51
It can have free passes and so on and so forth.

32:54
, and that CRM system keeps track of everyone who's in the circle, the needs They might have the things that are coming up for them on an ongoing basis.

33:05
People can call and say I need help with XY and Z.

33:08
Can you arrange that?

33:09
And the staff will arrange it, and people self direct the social activities and, , support that they want, right?

33:18
Nobody's ringing them being like, Oh, hello, person in a wheelchair.

33:22
Here's this crafting club without, you know, asking if they have any interest in crafting, you know, it's it's directed by the person now What I think is so genius about this is that the more people involved, the stronger this gets, and that is the opposite of our social care approach at the moment, right?

33:42
That's that's the key is like, How do you create structures that are positively benefited by everyone leaning on them and participating in them rather than the opposite?

33:54
And the thing that I talk about in the book, and I give other, you know, other great examples as well that I found utterly important about circle was that after a while, you know it gets going.

34:07
People start meeting each other.

34:09
Things are kind of going.

34:10
People began stepping in for each other.

34:14
So, you know, when the staff member knew, Oh, this person's got to have an operation, so they'll need someone to collect them and check on them a few days afterwards and so on, they called them and said, Can I arrange that for you?

34:26
And they said, Oh, no, no, no.

34:27
Other people from the circle are already doing it that would never have happened without a circle and the other models the same thing.

34:34
What it needs is something someone to step in and make people believe in it and give a systematised way of doing it.

34:45
It's very low cost, you know, I'm actually genuinely appalled that circle isn't There isn't a circle everywhere in every kind of borough or or whatever it is, because when you look at the metrics on it, it is ridiculous that this just isn't standard practise.

35:01
Because the metrics this is like success metrics, you know, are are actually astonishing.

35:06
, and what we also need to take into account from that is that the more of that kind of care we have to a certain extent, we can mitigate the more extreme care that's needed down the line.

35:17
Right.

35:18
, so in another example, I give of a cohousing project in London in North London.

35:24
, essentially, you know, when someone has an operation or breaks an arm or whatever, there's rotors that are already in place.

35:32
That person is going to heal more effectively.

35:34
They are less likely to have infections that escalate and so on.

35:37
And when I was researching all of these practises, I could honestly see how, how, , kind of life saving it would have felt for me.

35:45
but also that I truly think my mom's health experience would have been eased right by that situation.

35:53
And, , yeah, I do.

35:55
I think it's kind of a travesty, to be honest, that this idea circle is just sitting in her book and now in mine, , and in everything I write forever, , and isn't everywhere because it's so clever and it works so well.

36:06
And it came from It came from the community's needs.

36:11
It wasn't just, you know, parachuted in.

36:14
Yeah, lovely.

36:15
And sometimes it's just that it's the catalyst that gets things started, isn't it?

36:18
And and what comes from that and hearing what you're saying right at the beginning of that bit was about it.

36:24
It the what?

36:25
What we're aiming for.

36:26
It's not about we're trying to fix this caring problem, and we're trying to get rid of the caring problem or solve the You know this person needs some care, so we're trying to find some care, and then there won't be a problem anymore.

36:36
There's always been a shift into Well, how can we prevent the problem?

36:40
But the kind of solutions you're talking about don't just have those outcomes.

36:44
They have far bigger outcomes and far more exciting and positive outcomes about people enjoying caring and appreciating that time of their life.

36:52
And that phase of, you know, humanity, , as well as connecting, you know, giving people more natural connections as well.

37:00
It seems to have those kind of real, yeah, much more ambitious outcomes that perhaps aren't even in the planning of our other work.

37:08
But yeah, yes, it's about care as what a couple of feminist theorists call a species activity, because circle isn't just for carers and people needing care, right?

37:16
It's for everyone because everyone needs care, you know.

37:19
And I always say this.

37:20
I'm not like, Yes, there's more intensive, extreme forms of care.

37:24
I've been there, I understand that.

37:25
And, you know, you might have flu next week.

37:28
You know, there's probably someone who's living alone, who's perfectly healthy, normally around the corner from me, but who's got flu and just wishes someone would put lemsip on their front door.

37:37
And I don't know that all the way through to the person caring for someone with dementia who's tearing their hair out and just needs someone to watch that person for a bit or or whatever it may be.

37:49
You know, , the the, the system the state provided system, as we know, is really underfunded, right?

37:58
And, , yes, of course.

38:01
It needs more funding.

38:02
And there are people that, you know, doing really good work on that.

38:05
What I'm saying is we can do things in the meantime, and they also, , add huge value.

38:14
And we we don't seem to be paying attention to that because we've got into this fight between kind of public and private, and we've left ourselves out of the equation.

38:26
And I think that's partly that culture thing that I said earlier about people not wanting to think about it so much.

38:32
, now, of course, everything I'm saying would be far easier if our lives weren't ruled by needing to work as much as we work in order to get by.

38:42
Right.

38:43
So this is why in the book I talk about the need for normalising a shorter working week for everyone, for men as well as women for people who are ambitious, as well as people who just want to make a wage for everyone.

38:54
Because then you you, , open up this huge potential, you know, in in every every community, for this, this whole other way of doing interdependency.

39:08
Yeah, and lovely to think about that shorter working week.

39:11
In terms of it, it helps us rather than helps me.

39:16
So quite often it's about more thinking about more leisure time and more me time.

39:20
Whereas the thinking is actually more about more US time and community time and and and doing those those things that actually are the solution to the me time things as well.

39:29
They are the things that drive so lovely, and it makes me super proud.

39:33
We have our lovely little group locally.

39:35
My friend Ali went in for knee surgery and having just had someone had been supported by my family, I thought she lives on her own.

39:41
How on earth is she gonna cope?

39:43
And, you know, the person that set up a little Google spreadsheet, somebody else that, you know, started sort of.

39:49
What could we do?

39:49
Who can pick her up?

39:50
14 meals would be required various bags of ice and bananas when you know it.

39:55
And it just kind of emerged from a WhatsApp group and a Google spreadsheet and a friendly neighbour with the key.

40:01
You know who was able to put the put things together and just yeah, when it happen, we thought we've saved someone from social care having to come out.

40:08
This is a real win, and we've all connected better and like And what does that mean?

40:14
Going forward?

40:15
That's the thing I think is really in interesting.

40:17
Cos you're talking about something that when I talk to people about this and they've not heard someone sort of saying it in this way before, I think people are often like But this is such a like, small thing, you know?

40:26
And I know everyone wants the, like, big, flashy thing.

40:29
Good luck to you winning that, , but if you think about what you're just describing, yes, that was one person who needed something at a time.

40:37
But all those people involved in that right are now gonna feel way more at ease asking for things they need in the future.

40:45
They're gonna have understood there are systems we can use to do that where you're not gonna have to overextend yourself If you can only provide one meal or you can only you know, pop round for an hour, one day in a fortnight.

40:57
That's what you see.

40:58
You can do.

40:59
No one's asking for more.

41:00
So you start to learn this literacy in collective care that we just don't have.

41:07
And I think there's a real role there for government and local authorities and so on in supporting the development of that literacy, which I have never seen done.

41:16
Mhm.

41:17
Yeah, yeah, it's a a big area for potential there and seems to be working on people's strengths there.

41:23
So it's also there's another aspect that commissioners can be thinking around as well, which is around the kind of local economy.

41:28
And there's Joe Biden's concept of caring as infrastructure.

41:32
And what what kind of what might that mean in practise?

41:35
You know, do we think local commissioners can make decisions that actually help to grow economy rather than just to spend money?

41:43
Yeah, I mean, we could have a whole other conversation about, like, growth, right as a as an obsession of our current era in history, but we won't, so, yeah, I mean, again, caring is infrastructure.

41:56
I think it's a really useful way of thinking about it and it needs to have you inside the infrastructure, right?

42:02
Because it can devolve into this, like, sector thing where it's it's something else.

42:07
So thinking about it, I think a lot in terms of, like webs and interdependency and this kind of thing.

42:13
So thinking about this kind of mesh, , across everything.

42:17
And I think that's, that is the way to think about it, really?

42:21
Right.

42:21
If we want to undo the unnecessary difficulties carers are facing, , and I think we have to have that education and cultural shift that I've talked about right where you just expect caring to occur.

42:36
Therefore, what infrastructure do you need in place for everyone?

42:39
, and a lot of this is about the reconciliation of work and care, right?

42:43
And I think, you know, local authorities are actually really exciting, , Petri dish for lots of things, because they have quite a lot of control over their own practises.

42:54
So we there This has happened in some cases.

42:57
Where actually local authorities, , I you mentioned at the at the start.

43:01
I've worked on modern slavery a lot totally different topic, but actually there were lots of local authorities who were kind of pioneering and looking at their procurement in relation to how it was tapping into a supply chains that might be exploitative because they can.

43:14
And then they can produce reports and then they can lead private sector, and they can lead lots of other companies and they can lead government by the hand.

43:21
Right?

43:21
So I think we have to understand across any topic that if you're working in A in a local authority, there's a really exciting internal potential that you can reflect outwards and use as a campaigning tool and and, , exciting example for me, , And for me, this is about taking a community wealth building approach.

43:45
Really?

43:46
Right.

43:46
If we want to think about growth, I think we want to think about growth for whom, right?

43:52
What kind of growth actually is useful if you care about care and you care about this local area, and care is such a huge part of local authority expenditure that it can be used as a kind of, , you know, lynchpin a kind of calling card of the ethos of this local authority of the values and putting those into practise So we have things like the Preston model.

44:20
That's very famous.

44:22
I mean, I even, you know, I know the name of the councillor who run Who Who pioneered that there?

44:26
Matthew Brown.

44:27
I've never met him.

44:28
Why on earth do I know his name?

44:29
Because it was so amazing and exciting.

44:32
And it happened, which is much more important than it being amazing and exciting, right?

44:38
, it it is practically doable.

44:41
And there's there's so many reports and guidance out there on how to do it right and case studies of places that have done it, you know, in in difficult circumstances.

44:52
So I think for me, , thinking about caring as infrastructure is really kind of being embedded in in the area you're in and understanding that it's not just infrastructure for the care needs.

45:03
It's infrastructure for the whole community, you know it's creating.

45:06
It's creating wages for people.

45:08
It's creating purposes.

45:09
Skilling someone up so they can start their local care business.

45:14
And as a general principle, I do believe that things which are rooted in knowing the community they're operating in are going to work better.

45:23
I think that in general, across everything but I specifically do think about care, right?

45:28
And it's, it's a very strange idea that we've ended up with that we could have things kind of brought in from faceless PLA, , companies that are cited elsewhere that don't know the community that don't know the culture here.

45:44
You know that the person has no tie to it.

45:47
May not even, , have the same kind of may not even be able to understand each other's accents.

45:52
I live in Scotland, so that's obviously in my mind.

45:55
, you know, like, there's there's, all these things are going to make that actual care delivery much better as well as support, , the rest of the economy in the area.

46:08
So, I, I think, you know, again like there's there's so much out there on how to do this.

46:12
And, , we we really need to galvanise that.

46:16
Yeah, and there's lots of passion to be harnessed there.

46:18
Aren't there?

46:18
Local authorities?

46:19
There are people working for their local authority who are passionate about that area, you know, and are absolutely sort of.

46:25
They've grown up in that area.

46:27
Their friends and family live there, and they're absolutely passionate about making a difference in that area and seeing how they could draw together diff that that kind of you know, that unso approach rather than just while I'm working in adult social care.

46:38
So that's what this is all about, actually, thinking broader about the area and the impact that can have on the area.

46:44
That's exciting.

46:44
You know.

46:45
There are people that will be excited by that and will want to, you know, will leave a legacy not because they wanted to leave a legacy, but they will just because of the kind of work they could get involved in.

46:53
Yeah, and then much more than just the care delivery, right?

46:56
If you take that community wealth, building approach, what you're doing, like I said, you're you're creating new entrepreneurs.

47:01
You're creating new people having new skills.

47:03
You're making sure people have wages who were unemployed before because they've been able to go into this and so on and so forth.

47:08
So you actually having this kind of amazing ripple effect through the prism of care?

47:14
Yeah, and talking about things that are exciting.

47:17
You know, quite often people get a bit.

47:18
It's it's tough.

47:19
As we said, at the beginning.

47:19
It's tough to think about caring and those sorts of things.

47:22
It's a tough thing to start thinking about when when you think about it in those contexts.

47:26
Suddenly we we we're into an interesting topic and it's exciting.

47:29
We want to.

47:30
Our psychology is quite motivating to get there.

47:33
So thinking back about those simple things that kind of you as a as a carer when you I know you kind of found online forums and things like that.

47:41
And if you went to kind of any sort of virtual cuppa and stuff, how does little things like that?

47:45
How do they make a difference to carers just connecting them up to chat?

47:49
How does that make a difference?

47:51
I honestly think it's so vital.

47:53
And, , it was vital for me, actually.

47:57
Like, really a kind of lifeline.

47:58
, yes, I did join, , online coppers.

48:03
When you're doing American events and you say these things are called coppers.

48:06
They they love it.

48:07
It's brilliant.

48:08
So you keep you keep calling it that.

48:10
It really amuses people on the other side of the pond.

48:13
, yeah.

48:14
, and I did.

48:15
I did join those, at the start of 2020.

48:18
And I wish that I'd realised they existed before that if they did.

48:21
Or perhaps they were a covid thing, which again is like, , actually a gift.

48:25
You know that having to do things online is really helpful for carers because a lot of us can't get out and about, , in the same way as other people.

48:33
, so of course you know, it undoes the intense isolation.

48:38
And I You know, I think back to that time, period and it wasn't an emotion like it was a physical feeling of isolation.

48:46
It was so intense.

48:49
And it can really, , be a balm for that, right?

48:54
That there's this slice of time where there are other people who are different to you in all the ways that all humans are different.

49:01
But also like you in the shared experience and living in this world that doesn't see them.

49:07
, And so for me, you know, I, I say in the book, there was one.

49:12
It's such a weird little thing to have included in the book.

49:14
But there was one week where, for some reason, the joining link didn't come through or it went to my spam or something, You know, and I I didn't realise until the last minute, and I just cried because I couldn't enjoy, you know, and like, that should say something.

49:28
, So having that, , that sense of being witnessed in your difficulty very, very specifically for carers, I think part of the reason why it's so vital is that, as I said earlier, people kind of freak out about this topic, right?

49:45
And, , don't necessarily, you know, maybe they'll ask you about how the person is or what's going on with their kind of head cock to the side, but they're generally quite uncomfortable about it.

49:56
, and you might also be uncomfortable talking about the specifics of it, and I really noticed.

50:02
So for example, in one week someone was finding it really difficult to deal with their partner's incontinence, which their partner was very ashamed of and was hiding.

50:12
, and incontinence was something I've been dealing with for, you know, quite a while by then, and lots of other people were, of course, because it's so common.

50:21
and so look, you're suddenly in a space where nobody is like twitching because you said the word incontinence.

50:27
And most of us have had to navigate trying to give genuine care whilst someone is ashamed of needing that care, which is really tricky, right to do in a kind and respectful way, but still do the bodily things that have to be done to keep that person safe and and clean and everything.

50:46
so it's actually vital for sharing those practises as well and for sharing, you know, things about how to navigate the bureaucracies and so on and so forth.

50:55
I think they are, , again like they're a small thing that means so much more and has this ripple effect.

51:01
And I'm incredibly grateful that that existed, , and that the online forums exist as well.

51:06
And I always tell people who don't know about carers just go and read online forums of carers.

51:11
Go and read Facebook groups.

51:12
Go and read the carers UK forum and so on.

51:14
And you will just see, , this world that you're trying not to see And that doesn't have to be that way.

51:20
Yeah.

51:20
Powerful, powerful.

51:21
And for me, you know, joining a a Parkinson's Facebook group was where I found my tribe of these people that were, you know, quite, you know, caring in quite an advanced, you know, advanced care situation, complex situations.

51:32
And I was like, Ah, I felt like nobody else was doing this.

51:35
And and these people actually have some practical answers.

51:39
Accompanied with some emotional, you know, answers as well, that kind of empathy of understanding that, Yeah.

51:44
Just because, you know, the answer doesn't make it any easier.

51:46
But it's, you know, we're in it together.

51:48
Is is a hugely powerful thing.

51:49
So I'm so grateful to still have access to that kind of support, Even though, you know, working in this sector as well can feel like sometimes.

51:56
Oh, I need to.

51:57
Still, I still need support.

51:59
I still have bad days.

52:00
You know, it still be good to have to access that.

52:03
So, thinking about your, , you know what would be Emily Ken Way's manifesto for carers?

52:09
, you know, particularly.

52:10
We're thinking about local authorities commissioners, and and we're sort of thinking about the area.

52:15
What would you be your your rallying cry?

52:17
Your manifesto there?

52:20
I mean, my book would be that There you go.

52:24
90,000 words in manifesto.

52:28
, so, yeah, my kind of rallying cry is really truly it doesn't have to be this way.

52:35
Even within the constraints that we're in.

52:37
Yes, we need loads of systemic change we need infect in injections of funding and so on.

52:43
But within that, like I say, we can unleash the potential of care without pretending that it's a walk in the park without pretending that we're all heroes rather than just humans who something happened to, You know, we can still, , make changes and interventions today that actually help us see this as incredibly, , vital activity for humans and and ease those difficulties.

53:12
And so I mean, that's kind of what I what I believe is the kind of underpinning value system of how we need to think about care rather than it's pretending it's all difficult or pretending it's all heroism.

53:23
It's, it's It's understanding this, like hybrid situation.

53:27
And so, you know, practically speaking from the perspective of a local authority commissioner, you know, we need to be looking at community wealth building like I've said for all the reasons and there's there is really good guidance out there.

53:39
You know, there's an organisation called the Centre for Local Economic strategies.

53:45
ClA, C, LES.

53:47
It's very googleable.

53:48
You know, Preston has put out loads of stuff about this and so on and so forth, and they they didn't do it.

53:56
It didn't just happen, right?

53:58
And I think this is one of the things that, when we work in institutions, you know, I've worked in lots of, you know, I've been employed plenty, and you start to learn the grooves of the, you know, the things that are possible, the things that are plausible, that everything's kind of set up in particular ways.

54:16
Like you're, you know, a shopping trolley that can only go in certain directions.

54:20
All of these case studies that are out there of this community wealth building approach of, , localised care provision that, like harnesses the strengths of communities and is embedded in the community, started from someone saying, Maybe I'll do that and then having a meeting and, like, you know, step, step, step reading, not understanding, talking to someone trying something, trying something different so on and so on and so forth.

54:44
That is how human endeavour succeeds, and I think that we can forget that when we just see.

54:51
Oh, the Preston model.

54:52
Yeah, well, they've done it right?

54:53
No, that was just someone who people thought was a bit crazy at first doing something.

54:59
, so, you know, we really need to be looking at that.

55:02
I think local.

55:03
I think we do need to keep communicating the lack of funding.

55:06
I think you know, we shouldn't be afraid of shying away from that, you know?

55:09
Actually, I know we want to be positive and think about the things that can happen now.

55:14
, but, actually, you know, we need to hold those people.

55:17
We've voted into power to account.

55:19
, and local authorities are a vital voice for continuing to make sure the statistics are out there.

55:26
You know, I use statistics from the association of directors of, , adult social services.

55:31
, plenty.

55:33
You know, like that's that's help.

55:34
That is helpful.

55:35
You know, for the people that are out there who've just done all the conferences, you know, that are touting for a better future.

55:41
, and I think for me, you know, I used to work with Westminster politics a lot right, So I I'm done with that.

55:51
I can't.

55:51
I don't have the energy for it.

55:53
So for me, the thing that's truly exciting and that I think can be done and, , catalysed by local authorities is about this collective care approach, which is not a nebulous, fluffy thing.

56:05
It's a concrete thing.

56:07
So that's things like, yes, cotton circle.

56:10
There's also an idea I talk about in the book of carers cafes.

56:14
, so this is, , quite an underdeveloped idea.

56:18
I'd say Which doesn't which makes it exciting, right?

56:21
Because you can like we we can shape it.

56:23
We can evaluate it.

56:25
We can produce things that say, this is what worked.

56:27
This is what didn't let's keep going, et cetera.

56:29
But this is about having a bricks and mortar space right where carers can come in and can get various forms of support that they might need and that they can spend time with the person who's receiving care there.

56:42
But they can also do other things.

56:44
They can connect, right?

56:45
So, having that actual space to connect, we have a dearth of free public spaces.

56:51
OK, so ensuring that kind of thing.

56:54
And what about taking a role in in instigating these community approaches these mutual aid networks?

57:04
, somewhat bizarrely, my sister set up a mutual aid network during Covid in her area.

57:09
It's a place called Elton in south southeast London.

57:12
, and, , just one of the covid ones, you know.

57:16
And then there was a little grant after the lockdown to continue it, which she applied for, and she got those kinds of things are actually really important.

57:26
But they need a bit of additional nurturing in relation to how they intersect with the kind of care we're talking about because people often can't imagine that because of the extremity of something like Parkinson's or cancer or whatever, Right?

57:38
So I think we need to do a bit of work joining the dots between those working out what it would look like to actually skill local people up.

57:45
What resourcing does it need?

57:47
It doesn't need loads.

57:48
, but it probably needs a little bit, et cetera, et cetera.

57:52
So I think that there's immense potential there that is being really untapped or under tapped, and that Yeah, I, I hope.

58:01
I hope we're talking in a different way in five years Cos there's all these examples in all these places, and it's almost weird if your local authority is not instigating those lovely let Emily that's it feels like there's hope.

58:14
It feels like things can be done differently, and we can think much more positively about this as well.

58:19
There's a real sense of excitement in what you're sharing there, and it doesn't let people off the hook.

58:23
It needs investment.

58:24
It needs money, and local authorities can can get involved.

58:28
And that that can be really exciting to see what starts locally.

58:31
, and and you know, then what?

58:33
What ripples on from that?

58:35
So thank you so much for the examples you've shared for

58:37
The passion you've shared is absolutely fantastic.

58:40
, really appreciate that.

58:41
And I know those listening.

58:42
I can imagine people taking notes and they're off to Google various things.

58:46
So we will share some links alongside it as well.

58:48
But I know carers listening to this as well will also have a sense of hope of being seen and a sense that, actually, they might have some agency over what happens next.

59:09
, but not on their own, You know, with some support.

59:11
That sounds a fantastic way forward.

59:13
Thank you very much.

59:14
It's been really fantastic to meet you.

59:16
Thank you.

59:19
Oh, what a great interview, Suzanne.

59:22
Really interesting themes coming out of that.

0:36
The O, the one that really struck me right out of the door.

0:38
There was this idea that caring is difficult, but it doesn't have to be that difficult.

0:44
I it really resonated.

0:45
, for me, I How did it land with you?

0:47
Oh, absolutely.

0:48
It kind of gave me a new, , renewed passion for actually how important caring is and how it can also be a wonderful part of our lives and that really chimes with, you know, mobilise and how we want carers to have the opportunity to thrive.

1:03
It really felt like that's possible.

1:07
There's, I thought it was really interesting how, whenever we were talking about kind of practical steps that we can take at a local level.

1:14
Emily was really keen to pull it back.

1:17
To, to say, Actually, there's a fundamental paradigm shift that needs to happen here.

1:22
And I I think there's a bit of a tension for anybody working in the sector.

1:26
We we things need to change, , at at a sort of day to day level.

1:32
So local authorities are under huge pressure around budget.

1:36
, carers are really, finding that E elements of what's available at the moment are not working for them, but it it can feel slightly indulgent to to be thinking Well, yeah, fundamentally, we need to change our economy and, , value and understand the the place of care in a different way when, actually, you know, there are some really practical steps that we would be that we need to be taking.

2:01
But I wonder, Did did Do you feel that tension or or am I making it up?

2:05
I think it's definitely there, and I think we maybe that's the key to it.

2:10
We've been trying to make practical changes, to learn from each other and to implement new things.

2:15
But without the paradigm shift, I don't think those things are working.

2:19
I don't think those are things having as much effect as they could have.

2:22
And I think that's the thing that's gonna supercharge it all.

2:25
It's something really interesting, actually.

2:27
When?

2:28
When I was, on AAA programme called Zinc, which helps, , build, you know, exciting, innovative organisations to do things for the public.

2:36
Good.

2:36
, we were taught to to zoom in and zoom out all the time, So so kind of exercising that that muscle of being able to say right what is right in front of me.

2:46
What do I need to do here and then zooming out?

2:49
How does that fit into a bigger picture of where we wanna go?

2:52
What's the point on the horizon that we need to be getting to And it I think Emily kind of really encapsulated that incredibly difficult to remember that in a busy day, , you know, with with all the pressures that local authority commissioners are under.

3:07
But there are some things that we can be doing, and and and I thought it was interesting that co production really came out as a theme there.

3:12
, do have have you seen people managing that successfully in in the work that you've been doing with with local authority clients?

3:19
I think people sometimes don't realise when they're doing it, and I think that's when the co production is really exciting.

3:25
Yes, it's good to plan things in and have the right people in the room and, , involve the right people in the project.

3:32
But it's where they're already drawing on that experience.

3:35
They're drawing on data that's already there.

3:38
They're drawing on narrative and stories that people have already shared and bringing that right into their piece of work.

3:43
That's really exciting, and also where they're just trying something out, like, let's not sit in and talk about it for ages.

3:50
Let's try it out and see what people think about it when it's outside of that lab environment when it's in the real world and we're using this new thing or we're trying this new thing What does that feel like?

4:01
And I think having that little bit more of daring, I think, is where CO production happens a lot quicker and a lot more, you know, as part of how work is, which is great.

4:12
Yeah, totally.

4:13
Now, , Emily referenced a couple of organisations and things that we'll include in the show notes.

4:18
, but for now, Suzanne, thanks for having the chat with her and a massive thanks to Emily for what was a fantastic interview.

4:25
Thanks for joining us with Carer

4:26
Catalysts brought to you by Mobilise. Do subscribe to this podcast wherever you normally get them from and look forward to the next episode.