In this episode of 'Do I Sound Like I Care?' podcast, host Louise welcomes Andy Burnham, the Mayor of Greater Manchester, to discuss the multifaceted challenges of being a carer. The conversation explores Burnham’s personal experiences with caring for his father, who has Alzheimer’s, and the impacts of the 15-minute domiciliary care visit culture.

Burnham reflects on his professional insights gained as the former Health Secretary and his advocacy for a national care service. The discussion delves into the emotional and logistical complexities of caring for a family member, the importance of respite for carers, and the inadequacies of the current social care system. Burnham calls for political courage and systemic reform to better support carers in the UK.

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In my generation of politicians, there's a complete

cowardice on these issues.

People like myself really should be embarrassed about it.

You sound pretty involved to me, considering you're the

Mayor of Greater Manchester.

When your mum rings you, does she expect you to pull some strings at work ever?

Welcome to Do I Sound Like I Care?

The podcast by, for and about unpaid family carers.

I'm your host Louise Lynch, an Emmy award winning filmmaker turned full

time carer for my 84 year old mum who has an Alzheimer's diagnosis.

All right mum?

Yes.

My guest in this episode is Andy Burnham, the Mayor of Greater

Manchester, and we chat about his personal experience caring for his dad

who has Alzheimer's, the flaws in our social care system, and his thoughts

about how politicians are failing carers.

Plus, he shares his vision for a national care service.

So please don't forget to subscribe, like, share and follow us @CarerPodcast.

Hope you enjoy.

Right.

Are we good to go, David?

Yeah.

Here goes.

I'm a bit nervous and I don't know why.

Don't need to be.

Well, thank you for the reassurance.

So, Andy Burnham, welcome to Do I Sound Like I Care, the podcast.

It looks a little bit different from our normal podcast.

For those people listening to the podcast and not watching it, we're actually in

one of the offices in your building.

You are.

Well, thank you, Louise, for having me on.

And welcome to the Greater Manchester Combined Authority,

because that's where you are.

Ah, thank you.

I wondered.

And yeah, this is a makeshift studio, isn't it?

Right above Oxford Street, just as it becomes Oxford Road.

Yeah, so there'll also be a few buses going up and down.

There might be, and I'll be checking whether they're on

time as I see them come past.

And checking whether they're one of the amazing yellow buses.

Yes, so one of the biggest changes that I've overseen since becoming mayor is

putting buses back under public control.

But hopefully for those in Greater Manchester who've experienced the

yellow buses, I think they're quite a step up when it comes to older

people, people living with dementia.

So transport close to your heart.

We're actually here to talk about caring, um, because this podcast is, is made by

carers for carers about being a carer.

And Is that a subject that's close to your heart?

Yes, it is.

Um, professionally, um, because when I was health secretary, uh, God, I'm

showing my age now, uh, 15 years ago.

I was persuaded of the need to do something radical in this space back then.

I've always been persuaded ever since.

So I've kept that professional interest, but I'm now of an age in

my 50s where I've, uh, seen, um, care services myself because of one of

my parents, um, uh, having dementia.

That reinforces, I think, many of my kind of, uh, professional instincts about

why this issue should have been given a much higher priority many years ago.

So can I ask a little bit about your family and how, um, who,

who is it who has dementia and what kind, how's it impacted on them?

Yeah, so my dad has got Alzheimer's and, um, you know, it's been a really

tough journey the last few years, my dad had some cancer treatment in the, uh,

in the sort of back end of the pandemic.

And it felt to me as though that accelerated things.

And I, I wonder whether that's something that we need more public information

about how, if you have physical treatment for something, it can have that.

impact on, uh, on your sort of mental wellbeing.

And it seemed as though it did, uh, to me.

Um, and in retrospect, as a family, I'm not sure we would have, you

know, we would have maybe made some different choices with my dad.

So there were no signs of dementia or anything like that prior to, because I

had a similar experience during lockdown.

Mum fell and her undiagnosed dementia was on the radar because

she had to have a hip replacement.

I kind of already had a feeling that she, that she had memory problems

and there was lots of signs that she couldn't really cope and live on her own.

But you're saying your dad, wasn't showing any signs.

Not to me and my brothers.

Maybe my mum was sort of picking up the first signs, but not, not to us.

And the treatment he had was for prostate cancer.

And it's a very intensive, you know, short burst of treatment every day.

So it kind of takes a physical toll.

Um, and it, it just seems to me that those two things were connected and we hadn't

thought through that there may be other implications beyond the, the treatment.

I think that is a real problem with, uh, kind of the system that we've got.

I love the health service.

I will defend it to my dying day, but it is a, uh, uh, you know, an overly

medical, overly treatment based service.

And it, it looks at physical health more than it looks at mental health.

And I, and I do think those are sort of quite 20th century notions.

And I think in the 21st century, as we look at the, uh, full complexity

of an aging society, we have to rethink and recalibrate, I think,

how you look after the whole person.

I mean, that's really interesting because as a carer and

particularly a carer for dementia.

A lot of the services overlap and sometimes it can be a complete mystery.

In fact, I've been doing it for three years and I'll be honest,

I don't really know how it works.

It sort of works, but I just don't know how all the different

pieces of the jigsaw fit together.

And some aspects of caring for my mum with her dementia are handled

by the NHS and some by social care and some in the community.

I think it's just so complex the way it all fits together.

It's so complex.

Yeah, I think what I would say is it, it sometimes can just about

work for people, but that very much depends on people's circumstances and

their family situation, doesn't it?

But there are many people for whom it really does not work.

In my dad's case, um, something came through, uh, towards the point where

he was moving towards residential care that, you know, I think needs a,

needs a political response and it's the whole question of a domiciliary

care service that really is just not set up to, to, to do what it should

do and actually be preventative in terms of the support that it provides.

And it's this kind of 15 minute visit culture, isn't it?

And the rush you, you,

Yeah.

My dad was in a position where with a little time and a bit of patience,

he could have been kind of moved from where he was to a position where he

was comfortable for the rest of the day and then that would have been something

that, you know, my mum could have managed and, and it would have been acceptable.

But it's not like that, is it?

It was a rush and it was, and if my dad wasn't being

cooperative, as we experienced.

What happened repeatedly was a kind of, uh, kind of rush from

some of the carers who came in to say, well, we have to ring 999 now.

Wow.

Straight to 999.

Straight.

Um, you know, yeah.

And it, you know, I knew there was an element of this that goes on.

Yeah.

You know, it's particularly sort of these, some of these small

care companies who just don't want any liability for any of it.

They have the 50 minute visit structure.

That's how they're commissioned.

And anything that's a problem outside of that, well, We're not going to be

liable, therefore, you know, and it was a difficult for my mum who often had to talk

them out of ringing, she was ringing 999.

She was saying, well, no, it's not good for my husband, but it's going

to be terrible for the NHS as well.

And you know, every level to lose, lose for everybody.

Um, it was not a one off.

It happened, uh, on a number of occasions, you know, one or two

where I kind of got involved.

And, if you aggregate it up, I mean, that's just our family experience.

I think every day across England, there will be significant numbers of very,

um, very vulnerable people going into hospitals and ambulances who actually

don't need to be in that position.

If just a little more time was given to settling people in their environment,

given that the transition from waking up in the morning to a position where

they can be comfortable for the day is actually a complicated transition.

It's not a simple set of tasks.

It can be different one day from the next day.

And this is obviously a learning thing for us as a family.

Yeah, totally.

I had that experience of the 15 minute care culture.

So when mum was discharged from hospital, her social worker was

prepared to let me take over as full time carer, as long as there was some

professional personal care happening.

And I think that's because mum really resisted that and when she was being

looked after in hospital, and then later in a care home environment,

and I knew she would resist it from me because I'm her daughter.

I'm not supposed to be washing her.

It's meant to be the other way around.

And so she just didn't want to, you know, there was a battle and I was worried that

she, you know, would fall in the shower.

I wasn't qualified or trained for this.

I'm, you know, an unpaid family carer.

I'm not, I'm not, I'm not able to do this, but I didn't know

where to find a care company.

I didn't really know how it works.

And, you know, this is.

When caring comes upon you just like that, you don't know.

So the social worker in the hospital said they would make some inquiries

and find, find a care company.

And so they appointed a company that would do normal kind of council

contracts, which is the 15 minute culture.

That was really difficult because, you know, not only is it, are the

carers under a lot of pressure.

I think they call it a run.

They go from, they go from job to job to job to job.

But.

As recipients of the care that it's also changeable.

You, you know, you, you've got a window when they're supposed to come.

Yeah.

You can't,

and they don't.

Make it a production line like that can you?

And it's no criticism of those carers, by the way.

I I, you know, some of them are just unbelievable that people, aren't they?

And yeah, the fact that they still do it given the treatment they get, the pay,

the lack of respect for what they do.

And it's a really skilled thing that they It is.

That they do.

It is.

And society just doesn't.

sort of recognise that properly, but I think, you know, the issue is in what

you said about the company that was appointed, you know, I just take the

view that this whole area does not sit well with a sort of very formulaic,

you know, production line, private sector, drive out the inefficiency type.

It just doesn't, you know, it's, it's, it's classic territory for the public

sector for me, because you can't commoditise care like that, you know,

there's a 15 minute visit and that's it.

It just doesn't work.

And because the thing is, you know, it doesn't provide what the NHS needs.

The NHS needs people who can be supported in their homes to stay in their homes.

And that's best, that's better for everybody.

And also, staff who are trained properly.

paid properly with the right terms of secure employment and able to do that

capable first line of defense, if you like, in terms of supporting people.

And instead it's the opposite, isn't it?

You know, zero hours contracts, poverty pay, to be honest, that's what it is.

And it's amazing that it does kind of hold together for some people just,

and the reason it does is because of the goodwill of some of those

people who will sort of make it work.

How did your mum find it?

Tell me, tell me how she coped with that caring role.

At it's best.

Primary carer, she was the main carer for you.

Yes, absolutely.

And at it's best, it really worked.

And, you know, she got to know some fantastic people, um, who supported

my dad and I'm sure she would forever be grateful she'd say that.

And the issue came as things got more difficult.

That's where

the

issue came.

And there was no reflection again on the people who were coming

in to try and help, help him.

None at all.

You know, they're quite the opposite.

In fact, it became an issue of the system in which they are asked to work.

I.

e., if there's a problem.

and there was a problem some days around my dad cooperating and, you

know, doing what was asked of him.

If there was a problem immediately, it just wasn't supportive to her

because then it became stressful.

And that was then she would ring me or my brother or, you know, my other brother.

And It was adding to a burden on her, not taking one away.

And that was when it became completely counterproductive.

So I think there's a level at which a very basic 15 minute model with very

mild needs can work, but it quickly doesn't work in a situation where the

needs are moderate or more severe.

To be honest, I'm amazed that my mum managed it all for as long as she did.

And it was a.

a wonderful moment.

My dad's in a great care home.

Um, the organization who run it is called Nugent Care.

And they're, uh, I think their origins are as a Catholic, uh, care charity.

And, you know, that is very right for my mum and by extension, my dad, who's not

particularly religious, but my mom is, and, but it just works, it works for her.

I, um, remember one of the early visits that we did.

And one of the.

Uh, carers who work in the home said, God, how did you manage all of this so long?

'cause my mom had, I think, a feeling of guilt.

Oh, when that change had happened.

I'll bet.

And I saw the change in her face when the carers said that to her.

You know, it is, it's really hard, isn't it?

And the feel, you know, I, you know, when, when you say, do I do

I, uh, look, sound like I care?

Well.

You know, for people who are carers like my mum, the mix of emotions that

are going round all the time, the lack of sleep, um, the kind of everything

in terms of how you hold it together is, is almost beyond belief, isn't it?

And I've seen that, uh, in my own experience.

And, You know, the fact that people do hold it together, but the failure of

the system is putting undue pressure and feelings of guilt and you name it

on, on people who actually are, are, are working beyond wonders, aren't they?

In terms of what they are managing to do.

It sounds like your mum also had support from you and your brothers.

You talk about us, we, you're very, you seem very hands

on, very involved in, in it.

What was your particular journey through, through the caring experience then?

How have you found it?

It's been, uh, I've been a hard journey.

I mean, and I, if I'm honest, I mean, I've, I've played my part, but my

other brothers, both of them are in very senior positions in education.

I mean, one of my eldest brother has probably been more done more than I

have, but I tried to, you know, be part of the team and I have been.

But, you know, perhaps, you know, not having the same capacity as, as, as

the others to, to help, like, it's just been, uh, you know, kind of a

really difficult journey, you know, where you kind of see the change and

that first time you see that change.

I can remember now the first time I, my dad said something to me and I remember.

the shock of it, you know, realising that something was really

changing within, you know, in him.

And it was, yeah, that is a bit of a trauma, isn't it?

That you then have to deal with and just then all of it really,

you know, the kind of progression.

What did he say?

What was, what was the thing that shocked you?

Cause it's surprising.

That he could see something outside and he kept saying to me, could I see it?

And I kept saying, you know, and I, I, um, yeah.

Yeah.

Those kind of hallucinations, the delirium, that's the kind of thing.

That was a really hard thing.

And then there's the whole thing.

I mean, this is slightly, it's like my dad's a lifelong Evertonian and

he inflicted this, uh, uh, sort of burden on, uh, on me and Nick and John.

And, you know, in those stages.

We were still taking him with us, uh, to, to, uh, watch Everton.

But Everton being in a, a relegation battle, as they have been for the last

few years, it was all like a, I don't know, we all kind of started to feel the

sort of the weight of it all, you know, kind of everything around us was these

institutions and things were changing and not necessarily for the better.

And it all became, but, you know, eventually then he, we had to,

stop taking him and that was a bit of a, bit of a thing as well.

Yeah, landmark moment really.

Yeah, I think.

What I've discovered is your fifties are quite hard, aren't they?

Ooph they really are!

For those, if you have parents and kids, not everybody does.

No, and firstly, I should say, not everybody is blessed to be

in that situation, are they?

And, you know, that's, and I keep saying all the time that we're blessed in so

many, so many ways and we are, and, and, you know, I always will acknowledge that.

However, there does come a point in life, isn't it?

Where you have.

Yeah.

Kids in their late teenage, early twenties years, and all of that involves and

mm-Hmm.

you know,

supporting your, your mom and dad as well.

It's a, it's a, it's a tougher decade.

It is, it is.

Than I count counting on it being,

I know they talk about that.

Technically that's known as a sandwich carer.

So you've got, you've got your two lots of care and you are in the

middle,

as I say, and I'm, I'm getting off lightly if you like, but it's

not a great phrase to use, but you know what I mean when I say that.

You sound pretty involved to me, considering you're the

Mayor of Greater Manchester.

I would have thought you wouldn't have two minutes to do anything.

No, we're a close family and we never wouldn't be any other way.

And I do what I, you know, I try and offer to Nick and John what I can, I know I can

do, and we've all done things together.

And I've, you know, taken my mum to the things that, you know, I know would be

beneficial to, to her as part of it.

Cause that's a really important part of it as well, isn't it?

The sort of respite of, well, just events, you know, that, that, that.

you know, I know she would enjoy.

So,

yeah, you

know, that's, uh,

Respite is really, really important.

And, um, you know, sometimes it's just time to do something for yourself as a

carer or just to feel like your old self.

So if it was something that you used to enjoy and you just

can't get out of the house to do

Massively so.

And it can be just such a boost that gets you through the next

Circumstances, you know, Yeah.

Yeah.

Different.

Yeah.

Sort of scene.

Yeah.

So we've, we've, yeah, we've all, we've all, um, we've all

cared in one way or another.

Because a lot of carers will ring their children, you know, a lot

of carers and parents will ring their children in, in their fifties when

they, they need help with the caring and they'll say, Oh, can you help me?

You know, I need, I need some help with this.

When your mum rings you, does she expect you to pull some strings at work ever?

No, no, no, no, not, not, not like that.

Oh, that's a shame.

Well, she did ring me once.

I was in, um, I've been on, I think I'm trying to remember when exactly this

was, I've been on the Laura Kuenssberg programme, uh, on a Sunday and I'd, I'd

ended up staying in London cause I had some things happening on the Monday.

And I remember that Monday morning, you know, was it like half seven,

mum calling, I was like, Oh my God.

And the, my dad was having a situation, but Nick and John were just not available.

Right.

And I think that was the moment that.

It was the first moment that that had happened when none of us were available.

Yeah, and up to that point, fortuitously, someone had always been around.

Okay, I'll pop, I'll come over.

What help was she asking for?

It was because, well, my dad was just uncooperative,

and the carers had arrived, and they were saying, we can't deal with this.

And I think it was one of those 999 type things.

But then we just, yeah.

And we'd always been the kind of family that said, you know, we

wouldn't ever want to see any of us go into a care home and that

wouldn't be us and we would manage it.

I remember as health secretary saying things like, you know, some ways we don't.

We don't necessarily want residential care, we should be looking at a

future of care all in the home.

And I think that's possible, but only if you had a completely

different social care system.

It could be done, but you'd have to really massively increase

the resources available to it.

So the reality is it's not possible, is it, in the current,

uh, in the current world.

And, you know, I can now see the hugely important role that

residential care, care plays.

Yeah,

because also I see the improvement in my dad since he went in.

Oh, yeah.

Yeah.

Yeah.

There's quite a significant, you know, he's much more settled and he's and yeah,

and more capacity, more capacity has come back, which is, which is amazing.

Yeah.

That's great.

Yeah, it's a real positive.

And that's really comforting, I think, for carers to hear, because

they might want to just keep trying and trying and trying, especially with

dementia, and especially as well, I guess, with your, if it's your husband

or your wife or your lifelong partner, because we're caring for our parents,

which kind of feels, even though it's not the natural order, we've become the

parent, effectively, that kind of feels like a completely different relationship

in terms of the person that you've spent your life with and our parents got married

for life and took those vows seriously.

That's part of the hard bit of this, isn't it?

I was saying to you before about in your 50s it gets hard because you

have to then do things that you never imagined yourself having to do to look

after you, your dad, you know, you're in situations that you, you would have

kind of recoiled that wouldn't you, but

you, you know what I mean when I'm saying that.

So, but it has to be done, but that's another.

another adjustment, isn't it?

But, you know, I'm also conscious though that, you know, I'm describing a situation

here as though, you know, this is all uniquely difficult, but it's not, is it?

Because there are some people who are carers all of their lives, aren't they?

In terms of

Yes

um.

carers for parents with disabilities or kids with disabilities.

Yeah.

And I was just quite struck actually by something I was looking at yesterday,

is it kind of stood out a little in the kind of, frenetic exchanges of the

general election campaign, Ed Davey opening up about some of his caring life.

And I thought that was really great of him to do that actually,

I thought it was a really, uh, important thing that he'd, he'd done.

I mean, cause I, you think twice about talking personally about these things

as a politician, because you think, well, do people think I'm looking for

sympathy or votes or something from this?

And you're not, I mean, the politicians use this to.

to kind of raise these issues up the, up the agenda and give visibility to

the people who are often feeling hidden.

And I thought, you know, that, that's why I would talk about it.

But, and I kind of also saw that Ed Davey was doing something

really, really important.

I don't know if you saw the video that he's posted, but I thought it was,

it, it was really great, actually.

It was really touching, but it was really fantastic.

And we kind of need more of that in the political domain, not kind of doing it.

And therefore vote for me because it's much more about, okay, we,

we understand this reality, we see it, we, we appreciate it.

Yeah.

What can collectively we do about it?

Yeah.

Yeah.

It seemed to have a lot of empathy because he's he's experienced and

you know, there's no substitute for being care experienced

Well I didn't know that about him I'll be honest.

No, no, no, it was a revelation to me.

So I just didn't know and yeah, I think this is the sort of world we're

in now where politicians I think increasingly shut that stuff off

because of social media and a comment.

Yes we can we will you know deal with any of the most I don't know,

vicious comments about us that, you know, we're used to that.

You know, we, we, we've got an armour to deal with that.

But I, I know nearly all the politicians I know when people do that about family,

then it's like, you know, different level and you really can't cope with that.

So opening up that side of things is a, you know, and, and I think

sometimes I've, truthfully politicians stray away from this territory

for those, for those reasons, they just don't want to even open up.

that sort of side of them to anything.

I think it's not just politicians either, because there is

a kind of stigma around being a carer.

I know that sounds crazy, but because it's, um, it's undervalued and because

you're a bit invisible, it's linked with a lot of poverty and financial problems.

And if you're doing it and you're trying to stay in work, you don't want it

to, it to be seen as a disadvantage.

Yeah, you don't want to necessarily, sort of come in and say,

oh, woe is me because of X, Y and Z.

Or be overlooked for some, an opportunity because you've got this big

caring burden or your, or your colleagues have to pick up the slack for you.

If I look at it and I hear what you say, and I know that

applies, what you've just said to millions of people in Britain.

So we're not, we're not talking small numbers, are we?

No, I mean, is it 5.

7 million carers, uh, 1.

5 million, more than 50 hours a week?

And beyond those numbers, there are people like me, I

wouldn't necessarily call myself a carer although I have, would I?

I don't know.

It's interesting that.

Interesting.

Maybe I am now.

I don't, you know, well, maybe was for a bit, but now my dad's

in residential care, maybe not.

So, you know, anyway, you, there's levels of caring, isn't there?

Let me put it that way.

Care experienced.

Yeah.

Yeah.

Beyond that 5 million, I think there'll probably, well,

there's more on the fringes of caring, if I can put it that way.

But also those young carers, you know, I always, I often think about,

you know, of all the caring jobs, I mean, you know, we can sort of say

how hard it is in your fifties, but my God, if you're a young carer looking

after parents in your teenage years, that is, well, that's just something

that is utterly heroic, is it not?

You know, for those and what, what they do and how hidden

they are from everyone's view.

And the thing that just makes me feel, and this great conversation

is bringing out this feeling again.

People like myself really should be embarrassed about it in terms of the

lack of visibility that all of this has in the political debate and the

lack of visibility that those millions of people have in political discourse.

What does that say to those people who are just out there and they never hear

themselves talked about, they never hear themselves sort of being prioritised in

the political discourse and this pattern, I'm afraid, just keeps on, on repeating.

Yeah, I accept my responsibility in that.

I mean I as I said before I did try and do something but have I done enough?

No, and I don't think any politician has I think there's a real and I'll call it

as it is I'm afraid in my generation of politicians there's a complete cowardice

on these issues, cowardice and it's a sort of kind of thing about yeah The

focus groups don't raise it, therefore never touch it, you don't need to.

It's, it only becomes an issue about tax and you don't want to get an issue.

And there's a sort of a, this sort of modern politics has just, has developed

a framing of the way it deals with things that just has this outside of it.

Wow.

And it's, yeah, it is a wow thing because it is that bad.

I mean, I've lived it.

I mean, bear in mind, I lived it trying to raise social care in Whitehall.

Yeah.

And it made me an outsider for even trying to do something.

So what was your plan that you were trying to raise,

just for those that don't know?

In fact, for me, because I don't think I fully know, were you trying to integrate?

Tell me, tell me exactly.

I was indeed.

I mean, I was, in very simple terms, I was making the argument for social

care to be provided on NHS terms.

What does that mean exactly?

So, um, free, at the point of use.

Wow.

That would be great.

Uh, a national care service, I called it at the time, but what

I was kind of make the argument for was whether you have it as a national

care service alongside a national health service or whether you have

a national health and care service.

What I was saying was you have a continuum of care on

NHS terms that goes from home to hospital and back again and is

about the whole, the whole person.

So you look at people's physical, mental and social needs as one and not as

the current system tries to do: deal with physical needs in one place and

mental in another, and then social in a completely different system altogether.

That's what I was, what I was saying.

And I made the argument that rather than be exposed to unlimited care costs,

well I say unlimited, you know, can be pretty much unlimited down to that

threshold of £23,000, whatever it is.

I was saying that nobody should pay any care charges while they're alive.

but what we should do in return.

Um, is have a modest contribution from what they leave behind that is

a percentage contribution linked to what they, linked to what they have.

Um, and therefore nobody would, you wouldn't get the randomness of the

system where some people like, you know, like my dad or someone else

who's unlucky enough to get quite severe dementia and Alzheimer's.

Well, they get wiped out completely, don't they by the current system?

Savings wise, you mean?

Yeah.

Financially.

And then somebody just doesn't have that, isn't wiped out.

And I was saying, you know, that social care in England is as unfair

as US healthcare, because it just takes people out randomly, doesn't it?

Linked to how unfortunate they are.

And I was saying that's completely counter to the NHS principle.

Yeah.

And until we have a system in this country that supports people

with dementia, as well as it supports and treats people with cancer, then

we haven't got a we haven't got a fair system in the 21st century.

But when I put that forward, the idea of a, of a care levy,

okay

um, from what people leave behind, you know, never don't put people through

any of the indignity of selling homes and this and that and power of attorney or,

you know, just leave all that, let people not have to deal with that stuff while

they're caring because it's hard enough doing the caring never mind all of that.

It is.

And the paying and the dispiriting thing of just

paying your parents savings out.

Yeah

Yeah.

Leave all of that and then a modest contribution is taken from everybody

And anyway that quickly became now Gordon wants a death tax from you at

the 2010 election and it was a you know horrendously toxic, uh, political debate,

and it made me a kind of outsider in my own side, as though I'd, I'd opened up an

Achilles' heel, uh, at the election, and, uh, this is the sadness for me, you know,

and I, you know, does today's generation of politicians have to wherewithal to

advance big solutions to the things that are obviously wrong in our society.

And, you know, I hope I can be proved wrong at some point, but I'm still

worrying that today's political culture does not support that type of thinking.

It doesn't, and I think that's what it needs.

We talked about a carer feeling like there's all these different

services, they're not joined up.

Well, that would help with that problem that you have.

I myself have been in that situation that you're talking about, where

I ended up researching and finding a care company that actually will

come for the, almost the full hour.

Yeah.

And their staff seemed to have that more that time and the

patience and the, and what you were talking about that your mum needed.

But in order to pay for that.

Um, well, we have to pay for it because mum made the mistake of

saving for her old age, I suppose, is what you, which that generation did.

Um, and that's okay.

It should go on her care.

She made provision, but the cost of it is so extortionate that I don't

know how sustainable that will be.

And then what happens when she can't have it anymore?

So there's all that worry.

You get whittled down to that threshold, don't you?

And then, and then you get state support.

Then you go back onto the 15 minutes and then eventually,

you know, that's, that's just going to end up with her in care.

It doesn't work in any way, shape or form, does it?

It doesn't.

But even from that more economic point of view about, you

know, it almost, you could say will increasingly create the wrong incentive.

People say, well, I won't bother saving for my retirement

because I might lose it all.

Um, you know, I don't, I don't get, I don't get rewarded

for having, having done that.

So it's just not a sustainable situation, is it?

And there's no solution for the NHS without a solution for social care.

And the role of the unpaid family carer for sort of propping that up.

I think there's been a lot of, there's a lot more stress on us.

I mean, I've only been doing this for three years and there are people who've

been caring out there for so much longer, like some people for their whole lifetime,

as you say, or some people who've been certainly doing it longer than me and

have seen a lot of changes but our role is important, but the, the, the

pressure upon us then is, is made more so.

But if you had a much more capable, responsive National Health and Care

Service that would come in and provide heavy lifting type support in the home.

Then I think carers would and

would be supported to provide the extra bits of stuff that they then could do.

And you could see how this thing could, could work.

I'll never stop arguing for it.

Never.

I mean, I, uh, You know, I've only become stronger in my feeling that

it's got to be done at some point.

Well, I'd love that in my case, because I had to give up work,

which was not something I wanted to do.

But again, that sort of adds to burdens in other parts of the economy.

Correct, it's a drag on the economy, eventually isn't it?

With people, experienced people leaving the labour market.

Again, in your 50s, there's been a huge exodus.

Your experience, I think.

It's valid.

It's very relevant, isn't it?

In that, you know, those people who had those difficult caring situations

in the pandemic, some people decided, well, I won't be going back to work.

I'll just try and make my whatever I've got now to support me.

And yeah, I'll look at you.

So there's been a loss of people in the labor market, hasn't there?

And that has created an economic challenge.

So it doesn't add up.

Uh, you know.

It's all linked.

It is all linked.

And I just think.

The country needs a bit of a big sort of, you know, moment of, right, come at this

a completely different, different way.

What has it taught you?

What has going through this, this journey with your dad and with your

mum and being part of a family?

And I think it takes a family to do this.

Um, and, and, you know, your, your family sounds amazing.

Not every, not all siblings get on.

Not, you know, you might've had your moments.

I don't know.

I'm not going to pry, but...

no no you know it's absolutely taught me that my brothers and my

mum and my dad and we're, we're everything that we, we thought

we were, if you know what I mean.

So that's been, that's been, Uh, something obviously there's real

positives in, in all of this.

How is your mum doing now?

Thanks for asking.

Uh, I think the word would be recovering, I think.

Yeah, definitely.

Yeah.

But, you know, brilliant in, in so many ways and, um, yeah, um, I, we keep telling

her to be proud of what she managed to do.

And, you know, we, we are really proud of her and of my dad.

You know, he.

Um, thankfully, although, you know, we've lost some of my dad in terms of

he's, he's kept a sort of a sort of a, you know, a contentment about him, I

think is the way to, the way to put it.

Yeah.

And since he's gone into care, I think my mum and dad's

connection has improved a bit again.

Yeah.

Yeah.

So that's good.

I say we have lots to feel blessed about and you know, this isn't,

woe is us and you know, but I think.

you know, as a politician, you can't see these things with your own

eyes and say, okay, there's nothing else for me to talk about here.

There's a lot to talk about, isn't there?

And there's a lot to put in the public domain.

And, and I hope, you know, by speaking that there are some people who

listen to this podcast who just might feel a bit more seen and have a bit

more visibility in the, the public and political debate as a result.

And one last question, as a son, putting the politician

aside, how's it been for you?

Um, well, hard.

In that it's hard for anybody who has quite big professional demands but

then, you know, to me, I often find that, you know, my job, and this was

true when I was an MP and a minister as well, is doable when there's

quite minimal stuff going on in the personal space, uh, where it becomes

undoable is when you've got difficult stuff happening in the professional

space and, and I know that will be something that, you know, that everyone

A lot of people experience who are working.

Yeah, there's a point, you can feel the tipping point

close at times, can't you?

And some days you can feel it's right at your door, can't you?

Um, but not every day.

And caring can affect anyone at any time, at any level.

It can indeed.

And as I say, you know, I come back to it, credit to Ed Davey, but also Ed Balls, a

former colleague of mine who's spoken out about the care he provided for his mum.

You know, and I mean, we need more of that, more of that, definitely.

And we need an honest conversation about what 21st century care looks like.

We can do better than this.

Well, I'm so grateful to you for coming and talking about

your experience of care, Andy.

I think you're, um, a beacon and, um, a lot of people will relate to

it and, uh, I'm just so grateful for your honesty and for sharing.

Well, it's great to come on.

I don't know about a beacon, but I mean, I, what I absolutely

will be is a voice on it.

You know, I, I, I always have been.

That's why I was really pleased.

to come on.

I love what you do.

It sounds like, uh, you know, something that, you know, I would

recommend so strongly to everybody.

It's a podcast, I'm sure that gives a lot of, a lot of, um, encouragement to

people in some pretty difficult moments.

Cause I have learned that some days are really bleak are they not for people

who care and, uh, yeah, they need a lift and I'm sure you provide it.

Well, thank you, Andy.

You sound like you care.

I like to think I do.

I think you do.

Thank you so much.

You're welcome.

Appreciate that.

Thank you for listening and please like, subscribe, follow and join our

community of unpaid family carers on the Do I Sound Like I Care?

socials @CarerPodcast

Do I Sound Like I Care?

Is a Libra Studios production and was produced and edited by David Barnes.

See you next time.