December 8, 2022 • 40 mins
This episode of the CARE MATTERS podcast is dedicated to Katie Mountcastle 1967-2022. A much loved and missed daughter, sister and friend.
The Invisibilities of Social Care: perspectives from unpaid carersTo coincide with the publication of the House of Lords report, To coincide with the House of Lords report published today- A “gloriously ordinary life’’: spotlight on adult social care- we are pleased to release a new podcast episode, looking at some of the invisibilities of social care from the perspective of unpaid carers.
The Centre for Care Impact Specialist, Dr Rachael Black, met with unpaid carers Liz Naylor and Chris Sterry to discuss the 'invisibilities' of Social Care. Drawing on their experiences, they explore the misunderstandings and stigma attached to Social Care and share their thoughts on how Social Care could be changed to improve wellbeing amongst those giving or receiving care.
About our guestsLiz Naylor is a full-time unpaid carer and sits on the equality objectives panel and the expert panel of Sheffield Carers Centre.
Chris Sterry is an unpaid carer and trustee of Sheffield Mencap and Gateway Chris also sits on the expert panel of Sheffield Carers Centre.
Learn more about our research on the Centre for Care website here: https://centreforcare.ac.uk/
The CARE MATTERS Podcast is produced by Dan Williamson at the Centre for Care.
---Intro/outro music: Music: https://www.purple-planet.com is licensed under CC BY-SA 3.0
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
This episode of the Care Matterspodcast is dedicated to Katie
Mountcastle 1967, 2002.
A much loved and missed daughter, sister
and friend.
The Care Matters
podcast is brought to youby the ESRC Centre for Care and CIRCLE,
(00:24):
the Centre for International Researchon Care, Labour
and Equalities.
In this series,
our researcherswelcome experts in the field
and those giving or receiving careto discuss crucial issues in social care.
As we collectively attemptto make a positive difference to how care
(00:46):
is experienced and provided.
Hi and welcome
to this episode of the Care Matterspodcast.
My name is Rachel Black and I am theimpact specialist at the Centre for Care.
And I'm joined today by Chris and LizWe're going to be talking about this
(01:10):
notion and idea that adult social care
is hidden or invisible as a sector.
And then within that the work andthe role of unpaid carers is also visible
and people are unaware of the workthat happens.
So as I say, I'm joined by Chris and Liz.
Chris is an unpaid carer.
(01:30):
He's also the trustee of Sheffield,Mencap and Gateway.
And Nomad opening doors and he sits on theexpert panel of Sheffield Carers Centre.
Liz is an unpaid carerand she sits on the Equality Objectives
Panel and the Carers Expert Panelat Sheffield carers centre.
Thank youboth so much for joining me today.
This idea that adultsocial care is invisible has been explored
(01:52):
in in lots of different ways and acrosslots of different kind of and means.
But some recent examplesare the House of Lords
adult social care committee enquirythat they entitled Lifting the Veil,
where they explored the impactof the invisibility of social care
on people in receipt of care and supportand the people who care for them.
(02:12):
And this year's Carers Weektheme was making caring,
invisible, valued and supported.
So again, exploringthis idea that the and the efforts
and the actions of unpaid carersare largely invisible and hidden.
So I'm going to turn to you now.
And my first question is in two parts,really, it's do you
(02:33):
do you agree this ideathat adult social care and that the work
and the efforts of unpaidcarers are invisible
and why you think that might be?
And if I could come to Chris firstand then Liz about it.
Chris Yeah, I. I certainly agree.
There are a number of reasons.
Social care doesn't have a good name
(02:54):
in the population like the NHS.
Everybody uses the NHS, but
only people really need social care.
Social care.
So a large proportion of the populationdon't use social care.
Some people can't even seewhy it's there in the first place.
The government doesn't recognisesocial care
(03:15):
because it's never been properly funded.
And still isn't.
And even with COVID,
social care wasn't looked at,
especially for people
with learning disability,because they weren't on the priority list
for vaccinationsand neither were unpaid carers
(03:35):
until they was brought to the Government'sattention.
But it should have beenwith the Government's attention
because they get all the healthand social care department does
through the Leader programmethat was run through Bristol University,
which is looking at the
low mortality of deathswith people with learning disability.
(03:56):
So the evidence is there.
It's just thatthey're not bothering to look at it.
Thank you again, Liz.
Yeah, I agree with Chris.
Recently, Sheffield City Council produce
a prototype of the carers delivery planwhich says that each carer
saves the economy 19,336 per annum.
(04:18):
I think that that's an underestimate because if you think about how much it would
cost a government or a local authority
if there weren't unpaid carers
I think were hiddenbecause like Chris says,
it would highlightthe broken elements in society.
(04:39):
We're not attractive,we don't make good looks,
good news stories and it's not a good lookfor any government.
Societies failingthose people that are vital
to shore up a systemthat can't fully deliver what is necessary
because it would require being proactiveinstead of reactive,
(05:00):
and that being proactive would again
highlight something that is brushedunder the carpet now.
And the increase in deliverywould be complicated to deliver
and very expensive to do properly.
So yeah, I think we all do.
(05:22):
And I think we might.
Yeah, we are ignored.
Yes, I would say so.
I think just a number of reasonswhy that might be in your absence.
And I'm going to go pick some of those outand go back to what
Chris said at the start,the idea of a bad press
(05:43):
so that people don't really want to thinkabout needing care and support.
So and I look at what I do
and the things with that is thatand you both used to invest in press
and good news storiesis that there's a sort of stigma
or a worry attached to it, because we hearwe hear some of the negatives.
(06:07):
And I just wondered what you thought about
could that be changedor do we need to keep telling
those kind of more negative storiesto try and enact change?
And it depends on the negativestories are put forward is put forward
in a way that is detrimentalto the person or social care.
Then no.
(06:27):
If it's put forwardas a way to improve social care, then yes.
But it all depends what makes a good story
and negativity makes a good storyrather than positivity.
Yeah. Yeah.
And there's a genuine concernthat people have about
letting social care into their livesin some ways, and that they will
(06:48):
then lose control of that situationand that they're part of a big machine.
Yeah,
something just flashed in my mindas you were talking about
being a carerand about news around being a carer.
You could, you could very easily produce
(07:08):
good little stories or interesting storiesabout being a carer.
I think there's a problemabout being a carer.
I know that SheffieldCarers Centre have great difficulty
getting peopleto identify themselves as carers,
so that might be part of the issueand that it's something that people shy
away from, people shy away from admitting
(07:30):
or actually accepting thatthat's what they're doing.
For me it's about.
I'm sure.
I'm sure with clever marketing
this could be made into.
Look at what's happening in our societyrather like during COVID.
(07:52):
The good neighbourlinessthat was identified.
It could very easilybe turned around to say, look at what
the people of the UK are doingunbeknown to us. Yes.
And actually so hailedas the kind of community and societal
sort of spirits of look, look whatwe have the capacity to do as well.
(08:13):
We're doing this
on top of other commitments, workingwith other children or grandchildren.
So yeah, is.
Another area that could be looked at
is the importance of socialcare to the NHS. Yes.
Because lack of social care.
Brings more questions
to the NHS because if it's not lookedat as a proactive
(08:37):
situation, thenit gets into a more serious situation.
The NHS picks up the tab.
Absolutely. Absolutely
And know and also.
Bed blocking (08:48):
if there's no social care, You've got the ambulances waiting outside.
You can't get inbecause there's no beds for them to go to.
And that could well bebecause the patients that are ready
for dischargecan't be discharged to their own devices.
They need help with social careand it's not there to be available for.
(09:09):
Yes. So it's catch 22 Yes.
Yes, it is.
So we sometimes think of these thingsas two different systems actually.
So intertwined aren't they. That.
So they need to be
funding and supporting each other really
Integration of
the both servicesshould be a major priority.
(09:29):
Yeah, absolutely. Thank you for that.
And this sort of idea of peoplenot recognising themselves as carers
or not wanting to,
because that sort of setsthe wheels in motion
that they may not feelthat they want to do.
There's been a lot of discussionsabout whose role is it to support people,
(09:49):
to recognise that they are a careris there and increasingly it's GP's.
Well people would saythat they would get to speak to a GP.
So do you have any thoughts about
where the support might be to enable
somebody to recognise that they are careror I suppose to reassure somebody
who thinks they are but doesn'twant to take that next step really.
(10:12):
I mean, they know they're caring butyou're caring most likely for a relative.
Well, it's
saying that.
Parents look after children
and from the birth to the grave.
And that's what a family does.
It's not that it'slooked at as something separate.
(10:33):
Yeah.
I mean, it is interesting, isn't it?
Because there are times when I'm talkingto people about my caring role.
And some people get it and say,You've got this forever.
Whereas, you know, most people,by the time they're children are late
teens, early twenties, are thinking,a lot of my duties are now over.
(10:54):
A lot of my full timeduties are definitely over,
even if I have to start lookingafter grandchildren.
But going backto the identification of carers,
I've noticed in my own
GP surgery, which is an excellent surgery,
the notice about being a carer is very
(11:15):
vague and the poster itself is very small.
Recently went up to another green surgerywith Gabrielle for some physiotherapy
and the carers notice that is the onefrom the Sheffield Carers Centre
and is the first thing you seeas you walk in the door.
So it's interestinghow some practise will take it
far more seriously than others
(11:38):
and both of them are in an area where
I'm sure there will be many carers,
especially of older people.
Yes, I mean that's the other thingI think where people get muddled by care
or don't quite understand what it isbecause when you think of single,
you maybe think of care homesor you think of older people
(12:01):
and your experienceis that you've cared for
somebodythroughout their whole adult life.
So and if you have
your social care feels very visiblebecause you've been in it for a long time.
Be about
because there are people who willnever have complexity until they're caring
for an elderly relativemaybe or somebody in later life.
So I think there's also this
maybe awareness of where sociel carecomes into in somebody's life
(12:24):
that may make something elsethink about until it happens.
Yeah. Yeah.
I mean, with GP practises,this is part of health that virtually
everybody comes into contactwith at least once in their life.
But there again,they're having a lot of pressure
again on the funded really.
(12:47):
Does the GP have the time to do that work?
And most people possiblysee a receptionist more than a GP
or speakto a receptionist more than the GP.
And there is some work in Sheffield
which is a follow on projectfor some work that was done in Sunderland,
(13:07):
I think, wherebysome forms have been produced
to make it clear to a receptionistwhat we need to be looking out for.
Okay.
And some point iswhen they do find a carer, what to do,
where to signpost, etc.
There's a lot of in the out of StLuke's on the project to.
(13:28):
Write about ID carers.
But I think you right.
I think probably the health sort of
space of GP surgeries where I see somebody
maybe for a few weeks will spot the signs
and think, gosh, this person's progressin several point was not well, they
are a carer
and therefore can reserve signpostsome support
(13:50):
won't be that clear and
this is quite a lot around
signposting.
Isn't that pointing peoplein the right direction?
But some of the difficulties,that's the way it falls
to the unpaid character card.
Making all those different contactsas well is that it is not always
or there's rarely, if ever
I can take,would make someone who's going to say
(14:11):
just what I was going to sayand what is he talking?
Just said this so very well
having the GP or the GP's receptionistbeing able to identify it.
Many of those surgeries are overworkedas is the NHS is overworked.
What really needs to be, isn't there?
Is that a sort of middle personwho's an advocate
or a brokerwho simply helps that person is
(14:37):
who has been identifiedto know where to access.
So it's all very wellhaving the signposting on the website,
but you have to know how to usewhether that that
signposting exists in the first instance.
So it's, it's a role which would actually,
as Chris said earlier,about being proactive,
rather than reactive is a role that mightactually save money in the long run
(15:00):
because you're not going through the hoopsthat you would normally go through
because you've got somebodywho's not exactly fast tracking you
but is certainly pointing youin the right direction
and in much more efficient manner.
Absolutely. Yeah.
I think the idea of being proactiveand reactive was really interesting.
(15:23):
And I think you're right, it'snot it's not a system with
maybe some pockets of good practiseoverall is not people's experiences.
Is that suppose to them that they are
the person to navigatewhat is a really complicated.
System, which is really complicatedbecause we're looking at the invisibility,
we looking at generally the invisibilityof adult carers, but we shouldn't forget
(15:48):
that there's a fair proportionof young carers under the age of 16.
They need to be concentratingon their education
so that they can bea productive adult in later life.
But in the family,they could be looking after
vulnerable parents or vulnerable siblings.
(16:12):
So therefore, it's not just GPs.
It's the Education Department of Teachersthat need to be on the lookout
where a child doesn'tseem to be doing as well as they expected.
Is it that they doing careresponsibilities?
Because the first thingthe family will look at
is if we make this public, our childrenare going to be took away from us.
(16:35):
And so there's that there's a lot of fear
bringing social careinto any aspect of family life.
Yes, I think that's a really importantpoint, is this
is that fear is at this point now
lost control of this controlgoing to somebody else's hands.
(16:55):
And what could that mean for meand my family and the people I love?
Because it's placed on many occasions,it's been done by parents thinking
that the best thing to bring social careand the next thing the children of God,
awful, that's a thing of the past.
But you can never be sure.
That it's a definite fear in people'sminds isnt it?
(17:17):
Thank youthat's that's been a really interesting
it's it's it's not there's not justthe one reasons there's not as much goes
individual because of X it's multilayeredand there's lots of different reasons
why opt for people's own reluctanceto engage to then
you know all the services themselvesmaking making people aware
(17:40):
what they're entitled towhat they're able to access, only
making it easier straight for peoplein the same that a lot of time.
No it's not you know are people are able
to to navigate all those different thingsto get where they need.
And and this idea of a kind of advocate.
And I think there are
you know, we talked about SheffieldCarers Centre and there are other
(18:00):
charities or community organisationsthat do that don't they
but I think often that very overwhelmed
or not getting the fundingthey need to be able to make this.
They find it difficult to identifyat GP level for example.
So you know you're not
I don't know,
I'm sure it could,I'm sure it could be improved
and I'm sure that the Carers Centrewould want to know.
(18:23):
But it's not very visible, it's not very,
it's not very easy,it still seems a very ad hoc system.
Yes. Yeah.
I mean you're either luckyor you're unlucky in accessing it.
Yeah, I think so.
I think, Chris, you're sayingthat about integration of us.
(18:44):
You know, it's not only integrating thoseto health and social care, but
social care itself is an integration. It's
lots of little bits of services.
It's also better integrationwithin one organisation.
Yes, yes.
This departmentsdon't speak to each other.
When we were collating evidencefor that House of Lords inquiry
(19:06):
we talked to other carersand theres this notion of being lucky,
did you manage to speak tothe right person and and also
the supportwould be temporary as well is that
things can be in placeand working for now. Yes.
Well, could a change of government,could a change of system, could it
not be civil again?
(19:26):
And actually what you mean isworking is changes.
And so I think this idea of thingsbeing based on good luck rather than a
and a widely accessible,equally available system,
is it as well when.
There's a situation occurs where
the police are brought in or safeguarding,brought in, it's
(19:51):
normally a breakdown of social care
and everybody saying, well,why didn't people recognise this?
Why didn't they speak to each other?
And they have these multi-agency reviewsso they all get together and discuss it.
Then you get the dreaded phraseat the end, lessons will be learnt.
Well,
(20:12):
it looks as though
these lessons are being learnt.
Is it because nobody wants to learn?
Is there no money to learn?
If they don't start learning,then it's going to continue.
Absolutely.
And the gap between those,there's a feeling that the lessons
have been learnt, so they've been learntoften the hard way, but they've not been.
(20:33):
But the learning from thesehas not been put into practice.
And I think that sense of frustration isit feels like these conversations
that we're havingaren't new conversations,
but we're not seeing the changes that.
We're coming up with much more regularitythese days
for a number of reasons,and if social care was more prominent,
then possibly wouldn't be the case
(20:55):
or that it was just more. Yes.
So in terms of impact,I think we've touched on this in some ways
in that there's the sort of rolethat you have of trying to pull together
lots and lots of services.
Which is an effort in itself.
Isn't everything being spent?
A lot of people in emailand and the kind of lack of responsiveness
(21:20):
so that if you are going to approachservice because somethings changing or a
situation has arisen.
Are you going to get the help you need oris this going to be a very long process?
So just think about kind of
what the impact on youas far as unpaid carers
Is there anything that we've not coveredthat you would say is kind of
(21:42):
it comes out of this invisibilityor this lack of.
Just the general health of itan unpaid carer.
Yeah.
Because it is stressful.
It's stressful that
you're looking after somebody
for years on end.
You really want to do it.
(22:03):
And by doing so, your health suffers.
And really
that's even a bigger aspect to theto the NHS as well. Yes.
If social care was is thereand it wasn't as invisible
as it is, people's health will improve.
(22:24):
I have a phrase that I usefor my mood at times,
and I don't knowwhether I would still have this
syndrome that I
get if I hadn't if I wasn't a carer.
And it's called a siteof suffering at the moment,
some of the low level despair.
And what it means is that it's therewaiting
(22:47):
all the time that I might get frustrated.
I am getting increasingly wearyabout my role,
and that is because I am getting older.
And but it always feels
that there's somethingsitting on your shoulder
waiting to happen or happeningor that you're dealing with.
(23:10):
And that's what I feel about,I suppose, the invisibility of a carer.
I could be in a supermarket by myself
and no one would knowthat I was an unpaid carer.
But I know it.
Yes. Yes.
So, yeah, yeah.
I'd have to go back to 1976
(23:32):
and not have my child and then work out
whether I was still the sort of personwho would suffer from low level despair.
Yes, butI think you could be in the supermarket
when no one knows your care.
But you know that you've got that phonecall to a particular service to make or
you wait for an email from or you've gota review coming up in a couple of days.
(23:52):
I think that's the thoughtthat comes to constantly,
always delivering your gradeand this idea of being in a meeting.
I mean, I go to Zumba class on a Wednesday
and I have to explain I it didn't more,but I had to explain in the beginning
that my phone would be left oneverybody else.
It might not topeverybody else. I've got their phone on.
I don't know that that carers,but my phone is on in case
(24:16):
wherever Gabriel is somebody telephonesto say
she's just had a fit or she's had a fallor something like that, can you fetch her?
Okay. Yeah. It's not going away either.
It's generally being recognisedfor quite a number of years now.
In Sheffield there are around 60,000
unpaid carers every year.
(24:37):
About 20,000 disappear,another 20,000 come on.
And since COVID is viewed
that 60,000 is now increased to 90,000.
And also, I think the amount of caringthat people are doing,
it's become much more intensewhere it may be a few hours in a week.
(24:59):
It's now kind of more regular daily. Yes.
Because other thingshaven't opened back up again.
Some of the supportthat the groups that people have relied on
a lotstill not happening because of COVID.
Well, there's now Long COVIDbut people are living longer as well.
So that means more complexhealth issues are come forward.
(25:22):
People with learning disabilities,even though they are
generally viewedas their early deaths of 20% below
normal deaths,they are actually living longer as well.
So the complexities with disabilitiesare going to be here much longer.
And because of the natureof the disabilities,
(25:43):
it means that the health and needs
more care than it waspreviously under a longer period of time.
Yet at the same time its their carers that
need some support Yeah. Yes.
So we've talked about whysocial care is invisible,
by the way, of the effortsin the what over years do is invisible.
(26:06):
We talk about what that means to you.
So what would weyou know, if we could wave a magic wand,
what would we liketo see and doing differently?
What do we think needs to to change?
And magic wand is the form.
That is what I put right at the end of my.
Yeah.
So where would that moneybe kind of going?
(26:29):
What would you like to see? Investment?
A It's a number of
there's a there's a lack of social workers
because of the burdens they've got,
because there's a lack there'smore pressure on the ones that's left
a lot of councils are having
to use agency social workerswhich are much more costly.
(26:53):
So that's the professional area.
Yeah.
But in social care, when a family carer
can't cope as long as it would like to.
They've got to pay carers and this isa real deficit of paid carers as well.
Yes, the money they get is
(27:16):
round about the National Living Wage orthey could be paid the real living wage.
But currently it's not much differencein national, £9.50
in the real living wage as £9.90
So there's only about a 40p difference,which wasn't generally the case.
It would be much, much lower what you get.
(27:37):
Yeah.
But even that doesn't compare towhat people could earn
or the lowgenerally low paid professions. Yes.
Perhaps much less responsibility.
Right. Is as well.
Well, what people are doingcompared to what they're being paid
just doesn't add up And I think
(27:58):
what's interesting about thisis, isn't it?
It's just those figures that you've quoted
and the fact that it is
a low paid occupationand therefore it's a low
status occupation,when in fact it ought to be
a highly valued occupation
(28:19):
and the recompense should equal that.
But it won't.
And I don't think it ever will.
So what you've got to do is
remarket it, if you like,keep using this idea of marketing.
But my whole thing is when you said,What could we change?
I think
the first thing that has to be doneis that we have to have a media campaign.
(28:41):
There are lots of programmes out there
about people with disabilities.
I tend not to watch thembecause I find them
deeply disturbing,
but there's very little madein those programmes
about the peoplewho support the people with disabilities.
They are hidden people going back to
(29:04):
the ethos of this of this podcast
and it's what we value
and what's out there and promoted
as a service is not valued.
The social workers are.
Bombarded by people like us
(29:26):
saying this is not good enoughand they know it's not good enough.
So it's it's a broken system.
It needs money,but it also needs awareness.
It needs a media campaignwith an explanation
of what being a carermeans to many different types of carers.
And why aren't we identified,why aren't we recognised?
(29:50):
Why aren't we supported?
And I think that's almost a philosophical
question. But.
Practically it is about money.
And I don't know how this government
or any subsequent governmentis going to find the will.
(30:12):
To support us financially? Yes.
Support the Support services financially.
Yeah.
I don't have great optimism
because we go back to the original things.
It's not very interesting.
It's not very exciting.
It's not like,giving you £400 off your energy bill.
(30:33):
Yeah. It's not a quick win, is it?
A lot of it needs to be unpicked and fixedand it's not going to be done.
we don't have
the magicwand, the way to do it overnight.
And it's not just a media campaignfor the population.
It should be a media campaignfor government because
sometime this year, one
(30:54):
governmentminister said that to help social care,
families should do more.
Quite frankly, that person is not livingin the real world
now because families are doingall they can and much more.
Yes. Yes.
At the last count.
In the U.K.
unpaid carerssaving the UK 139 billion a year.
(31:19):
And when you have a needs assessmentfor a person
unpaid care is not costed.
I believe it's not costedbecause It would actually show that
it is a much larger figure
than social care can provide.
I was also wonderingwhether there could be
some link to the Equality Act,the Equality Act
(31:43):
that is now an umbrella term for all sorts
of different inequalities.
But this isn't an equality. Yes.
And to make to put somesort of legality onto it.
Yes, I think it's something that carers UKhave discussed.
I don't know.
(32:04):
They do maybe a little bit hereprotected characteristics.
And that means that you would beand you would have the right to certain
protections through your employerthrough your health care things.
But yeah, I think you're right.
I think it's a notionthat be sort of explore and again
would increase that visibility
because it would it would give peoplesome legal protections
(32:24):
that would recognise the role and the waysin which that impacts on people.
And that will mean people have more health
inequalities, less access to employmentbecause people have to leave work.
So yeah,I think there is discussions around that
and it is one such way of,of raising the profile of protection.
That is to.
Some extentthis was done with the Care Act 2014
(32:50):
that within the act it was put down
not as a must but as a recommendation.
Yeah.
The first thing the government did
when COVID came was to dilute
the Care Actso that the responsibilities of councils,
(33:10):
if they so wished,they could apply for some of
the responsibilitiesto be temporary alongside.
Not many councils did.
Sheffield certainly didn't. The.
My guess was that it was the first thingthe government did.
We really the first thing the government
(33:32):
should have been doingis provide more money.
Yes. Yeah.
And I think the Care Act does cover someof the things we've been talking about,
as with the lessons learnt,we've not really seen interaction that way
and I think that's the frustration.
To get councils to do
to abide by the Care Act,you've got to take legal action.
Another aspect is that legalaid is being drastically
(33:55):
reduced in, you know, whether that was in.
Implicitly to
safeguard people, not to be legal.
Action on the government is as I guess
it's a costly process, it'sa lengthy process.
And really, unless a carerget another organisation to fund them,
(34:17):
they're not going to tell peoplewhat to do.
So it's as thougheverybody is against an unpaid carer
and people with care needs
So I think I mean,I think what we're saying is
that there is a long way to go,but there's a lot to be done.
And funding would be certainly vital
(34:40):
in that process in terms of funding.
People in various
poses, social workers, care workers,and also not just
funding more co-workers,but that that being your valued
occupation, that is reflectedin the salary that people get,
but also the sort of public esteemwe saw the clap for the NHS during COVID
(35:02):
and it felt like carers was bought in
at the last minute but actually wasn'tfully part of that discussion as well.
So this invisibility impacts on
not only the kind of support we get,
but how as a as a sector, its values.
And I think that.
What I'm talking about to finance also
(35:25):
the carer's allowance is mentioned
that the people really knowwhat the carers allowances
the it's not anit is not an allowance for caring
it's an allowanceto supplement people's income
by not being able to work as much so.
And the minute you get the statepension, it's taken away.
(35:48):
Again.
You still have to make a declarationthat you have it,
but in reality, you're won'tbecause technically on a state pension.
You lose an income.
Yeah, but you're still caring Haven't.
It's not a payment for caringNo, it's a payment for loss of income.
I'm just realising sitting here andit is an aside and it's very subjective.
(36:10):
I worked here atthis university for 28 years
and to protect
my health and sanity,I took retirement at the age of 58
and worked it outand there was an offer at the time.
But that's seven years of pension
contributions by me and the universitythat I lost out on, isn't it?
(36:34):
Yes. In order to
be be a full time carer.
Yeah.
Because I could no longerhold down a very responsible
job and juggle all the balls
and that perhaps Just like
when you retire through ill healthand you get your full pension.
That's the sort of areathat should be protected by law. Yes.
(36:56):
Because you're leavingfor a specific Purpose
to do a specific task.
Absolutely.
And the impact of needingto leave work on pensions
and then how well people's financial self
stability in older age than it isI think is a huge factor as well.
That means that people are makingdecisions during their working age.
(37:20):
That has implicationsfor their whole lives as well.
And so,yes, that's I think something that and
again probably isn't seen,you make that decision in the moment.
Do you don't then think 20 years from nowthat's Less pension than I paid into.
Yes. Yeah, yeah.
And if you're lucky to be able to
get carer's allowanceand do some work as well,
(37:44):
it's not a non-taxable benefit.
That's
great.
I'm not sure what the amount is,
but I think it's less than 70.
Yeah, it'ssomething like £68, something like
that. Not that I've had it for years.
It's welcome if you can get it.
(38:04):
But it's a certainlyIn the current climate,
it doesn't really help that much. Yes.
And also, like you says, it may not be
maybe the awarenessthat they were talking through.
If peope aren't identifying as a careror aren;t seeking support still
and then they would be missing outon a benefit.
They even if it's not, it's notthe way we'd like to see it.
(38:27):
It could be helpful.
They may not know.
I worked what the hourly rate was at onepoint was about five or six years ago
and it worked out to be 1.92 an hour
based on the minimum hoursof 35 a week right.
Now going to draw it to a close,I think because there's just
so much that I think abouthas been so fascinating still through.
(38:49):
But our discussionsas we already kind of suspected
that this is a huge,a multifaceted range of issues
that that ultimately impact on carersand on the people that they care for.
So this is and unfortunately,there's not one, one feature that we can
of see that there are a couple of keythings that could happen in this
(39:09):
funding act and an awareness and a see
when the profile of adult social careisn't it but thank you so much Chris
and there's still it goesit's been fascinating to hear
your thoughts and experiencesand certainly
it was a lot to think aboutand maybe maybe
we didn't I maybe not much hopeate the minute But if we were also saying
(39:31):
similar things are pushing this forward,hopefully we'll start to see some changes.
But thank you so much for your time.
The good thing is that actions like thishave taken place.
Yes. Which is often beneficial.
Yes. Hopefully in the end it was the samesimilar things to to make change.
But thank you.Thank you for your time. Thank you.
This episode of the Care Matterspodcast is dedicated to Katie
Mountcastle 1967, 2002.
A much loved and missed daughter, sister
and friend.
The Care Matters
podcast is brought to youby the ESRC Centre for Care and CIRCLE,
(00:24):
the Centre for International Researchon Care, Labour
and Equalities.
In this series,
our researcherswelcome experts in the field
and those giving or receiving careto discuss crucial issues in social care.
As we collectively attemptto make a positive difference to how care
(00:46):
is experienced and provided.
Hi and welcome
to this episode of the Care Matterspodcast.
My name is Rachel Black and I am theimpact specialist at the Centre for Care.
And I'm joined today by Chris and LizWe're going to be talking about this
(01:10):
notion and idea that adult social care
is hidden or invisible as a sector.
And then within that the work andthe role of unpaid carers is also visible
and people are unaware of the workthat happens.
So as I say, I'm joined by Chris and Liz.
Chris is an unpaid carer.
(01:30):
He's also the trustee of Sheffield,Mencap and Gateway.
And Nomad opening doors and he sits on theexpert panel of Sheffield Carers Centre.
Liz is an unpaid carerand she sits on the Equality Objectives
Panel and the Carers Expert Panelat Sheffield carers centre.
Thank youboth so much for joining me today.
This idea that adultsocial care is invisible has been explored
(01:52):
in in lots of different ways and acrosslots of different kind of and means.
But some recent examplesare the House of Lords
adult social care committee enquirythat they entitled Lifting the Veil,
where they explored the impactof the invisibility of social care
on people in receipt of care and supportand the people who care for them.
(02:12):
And this year's Carers Weektheme was making caring,
invisible, valued and supported.
So again, exploringthis idea that the and the efforts
and the actions of unpaid carersare largely invisible and hidden.
So I'm going to turn to you now.
And my first question is in two parts,really, it's do you
(02:33):
do you agree this ideathat adult social care and that the work
and the efforts of unpaidcarers are invisible
and why you think that might be?
And if I could come to Chris firstand then Liz about it.
Chris Yeah, I. I certainly agree.
There are a number of reasons.
Social care doesn't have a good name
(02:54):
in the population like the NHS.
Everybody uses the NHS, but
only people really need social care.
Social care.
So a large proportion of the populationdon't use social care.
Some people can't even seewhy it's there in the first place.
The government doesn't recognisesocial care
(03:15):
because it's never been properly funded.
And still isn't.
And even with COVID,
social care wasn't looked at,
especially for people
with learning disability,because they weren't on the priority list
for vaccinationsand neither were unpaid carers
(03:35):
until they was brought to the Government'sattention.
But it should have beenwith the Government's attention
because they get all the healthand social care department does
through the Leader programmethat was run through Bristol University,
which is looking at the
low mortality of deathswith people with learning disability.
(03:56):
So the evidence is there.
It's just thatthey're not bothering to look at it.
Thank you again, Liz.
Yeah, I agree with Chris.
Recently, Sheffield City Council produce
a prototype of the carers delivery planwhich says that each carer
saves the economy 19,336 per annum.
(04:18):
I think that that's an underestimate because if you think about how much it would
cost a government or a local authority
if there weren't unpaid carers
I think were hiddenbecause like Chris says,
it would highlightthe broken elements in society.
(04:39):
We're not attractive,we don't make good looks,
good news stories and it's not a good lookfor any government.
Societies failingthose people that are vital
to shore up a systemthat can't fully deliver what is necessary
because it would require being proactiveinstead of reactive,
(05:00):
and that being proactive would again
highlight something that is brushedunder the carpet now.
And the increase in deliverywould be complicated to deliver
and very expensive to do properly.
So yeah, I think we all do.
(05:22):
And I think we might.
Yeah, we are ignored.
Yes, I would say so.
I think just a number of reasonswhy that might be in your absence.
And I'm going to go pick some of those outand go back to what
Chris said at the start,the idea of a bad press
(05:43):
so that people don't really want to thinkabout needing care and support.
So and I look at what I do
and the things with that is thatand you both used to invest in press
and good news storiesis that there's a sort of stigma
or a worry attached to it, because we hearwe hear some of the negatives.
(06:07):
And I just wondered what you thought about
could that be changedor do we need to keep telling
those kind of more negative storiesto try and enact change?
And it depends on the negativestories are put forward is put forward
in a way that is detrimentalto the person or social care.
Then no.
(06:27):
If it's put forwardas a way to improve social care, then yes.
But it all depends what makes a good story
and negativity makes a good storyrather than positivity.
Yeah. Yeah.
And there's a genuine concernthat people have about
letting social care into their livesin some ways, and that they will
(06:48):
then lose control of that situationand that they're part of a big machine.
Yeah,
something just flashed in my mindas you were talking about
being a carerand about news around being a carer.
You could, you could very easily produce
(07:08):
good little stories or interesting storiesabout being a carer.
I think there's a problemabout being a carer.
I know that SheffieldCarers Centre have great difficulty
getting peopleto identify themselves as carers,
so that might be part of the issueand that it's something that people shy
away from, people shy away from admitting
(07:30):
or actually accepting thatthat's what they're doing.
For me it's about.
I'm sure.
I'm sure with clever marketing
this could be made into.
Look at what's happening in our societyrather like during COVID.
(07:52):
The good neighbourlinessthat was identified.
It could very easilybe turned around to say, look at what
the people of the UK are doingunbeknown to us. Yes.
And actually so hailedas the kind of community and societal
sort of spirits of look, look whatwe have the capacity to do as well.
(08:13):
We're doing this
on top of other commitments, workingwith other children or grandchildren.
So yeah, is.
Another area that could be looked at
is the importance of socialcare to the NHS. Yes.
Because lack of social care.
Brings more questions
to the NHS because if it's not lookedat as a proactive
(08:37):
situation, thenit gets into a more serious situation.
The NHS picks up the tab.
Absolutely. Absolutely
And know and also.
Bed blocking (08:48):
if there's no social care, You've got the ambulances waiting outside.
You can't get inbecause there's no beds for them to go to.
And that could well bebecause the patients that are ready
for dischargecan't be discharged to their own devices.
They need help with social careand it's not there to be available for.
(09:09):
Yes. So it's catch 22 Yes.
Yes, it is.
So we sometimes think of these thingsas two different systems actually.
So intertwined aren't they. That.
So they need to be
funding and supporting each other really
Integration of
the both servicesshould be a major priority.
(09:29):
Yeah, absolutely. Thank you for that.
And this sort of idea of peoplenot recognising themselves as carers
or not wanting to,
because that sort of setsthe wheels in motion
that they may not feelthat they want to do.
There's been a lot of discussionsabout whose role is it to support people,
(09:49):
to recognise that they are a careris there and increasingly it's GP's.
Well people would saythat they would get to speak to a GP.
So do you have any thoughts about
where the support might be to enable
somebody to recognise that they are careror I suppose to reassure somebody
who thinks they are but doesn'twant to take that next step really.
(10:12):
I mean, they know they're caring butyou're caring most likely for a relative.
Well, it's
saying that.
Parents look after children
and from the birth to the grave.
And that's what a family does.
It's not that it'slooked at as something separate.
(10:33):
Yeah.
I mean, it is interesting, isn't it?
Because there are times when I'm talkingto people about my caring role.
And some people get it and say,You've got this forever.
Whereas, you know, most people,by the time they're children are late
teens, early twenties, are thinking,a lot of my duties are now over.
(10:54):
A lot of my full timeduties are definitely over,
even if I have to start lookingafter grandchildren.
But going backto the identification of carers,
I've noticed in my own
GP surgery, which is an excellent surgery,
the notice about being a carer is very
(11:15):
vague and the poster itself is very small.
Recently went up to another green surgerywith Gabrielle for some physiotherapy
and the carers notice that is the onefrom the Sheffield Carers Centre
and is the first thing you seeas you walk in the door.
So it's interestinghow some practise will take it
far more seriously than others
(11:38):
and both of them are in an area where
I'm sure there will be many carers,
especially of older people.
Yes, I mean that's the other thingI think where people get muddled by care
or don't quite understand what it isbecause when you think of single,
you maybe think of care homesor you think of older people
(12:01):
and your experienceis that you've cared for
somebodythroughout their whole adult life.
So and if you have
your social care feels very visiblebecause you've been in it for a long time.
Be about
because there are people who willnever have complexity until they're caring
for an elderly relativemaybe or somebody in later life.
So I think there's also this
maybe awareness of where sociel carecomes into in somebody's life
(12:24):
that may make something elsethink about until it happens.
Yeah. Yeah.
I mean, with GP practises,this is part of health that virtually
everybody comes into contactwith at least once in their life.
But there again,they're having a lot of pressure
again on the funded really.
(12:47):
Does the GP have the time to do that work?
And most people possiblysee a receptionist more than a GP
or speakto a receptionist more than the GP.
And there is some work in Sheffield
which is a follow on projectfor some work that was done in Sunderland,
(13:07):
I think, wherebysome forms have been produced
to make it clear to a receptionistwhat we need to be looking out for.
Okay.
And some point iswhen they do find a carer, what to do,
where to signpost, etc.
There's a lot of in the out of StLuke's on the project to.
(13:28):
Write about ID carers.
But I think you right.
I think probably the health sort of
space of GP surgeries where I see somebody
maybe for a few weeks will spot the signs
and think, gosh, this person's progressin several point was not well, they
are a carer
and therefore can reserve signpostsome support
(13:50):
won't be that clear and
this is quite a lot around
signposting.
Isn't that pointing peoplein the right direction?
But some of the difficulties,that's the way it falls
to the unpaid character card.
Making all those different contactsas well is that it is not always
or there's rarely, if ever
I can take,would make someone who's going to say
(14:11):
just what I was going to sayand what is he talking?
Just said this so very well
having the GP or the GP's receptionistbeing able to identify it.
Many of those surgeries are overworkedas is the NHS is overworked.
What really needs to be, isn't there?
Is that a sort of middle personwho's an advocate
or a brokerwho simply helps that person is
(14:37):
who has been identifiedto know where to access.
So it's all very wellhaving the signposting on the website,
but you have to know how to usewhether that that
signposting exists in the first instance.
So it's, it's a role which would actually,
as Chris said earlier,about being proactive,
rather than reactive is a role that mightactually save money in the long run
(15:00):
because you're not going through the hoopsthat you would normally go through
because you've got somebodywho's not exactly fast tracking you
but is certainly pointing youin the right direction
and in much more efficient manner.
Absolutely. Yeah.
I think the idea of being proactiveand reactive was really interesting.
(15:23):
And I think you're right, it'snot it's not a system with
maybe some pockets of good practiseoverall is not people's experiences.
Is that suppose to them that they are
the person to navigatewhat is a really complicated.
System, which is really complicatedbecause we're looking at the invisibility,
we looking at generally the invisibilityof adult carers, but we shouldn't forget
(15:48):
that there's a fair proportionof young carers under the age of 16.
They need to be concentratingon their education
so that they can bea productive adult in later life.
But in the family,they could be looking after
vulnerable parents or vulnerable siblings.
(16:12):
So therefore, it's not just GPs.
It's the Education Department of Teachersthat need to be on the lookout
where a child doesn'tseem to be doing as well as they expected.
Is it that they doing careresponsibilities?
Because the first thingthe family will look at
is if we make this public, our childrenare going to be took away from us.
(16:35):
And so there's that there's a lot of fear
bringing social careinto any aspect of family life.
Yes, I think that's a really importantpoint, is this
is that fear is at this point now
lost control of this controlgoing to somebody else's hands.
(16:55):
And what could that mean for meand my family and the people I love?
Because it's placed on many occasions,it's been done by parents thinking
that the best thing to bring social careand the next thing the children of God,
awful, that's a thing of the past.
But you can never be sure.
That it's a definite fear in people'sminds isnt it?
(17:17):
Thank youthat's that's been a really interesting
it's it's it's not there's not justthe one reasons there's not as much goes
individual because of X it's multilayeredand there's lots of different reasons
why opt for people's own reluctanceto engage to then
you know all the services themselvesmaking making people aware
(17:40):
what they're entitled towhat they're able to access, only
making it easier straight for peoplein the same that a lot of time.
No it's not you know are people are able
to to navigate all those different thingsto get where they need.
And and this idea of a kind of advocate.
And I think there are
you know, we talked about SheffieldCarers Centre and there are other
(18:00):
charities or community organisationsthat do that don't they
but I think often that very overwhelmed
or not getting the fundingthey need to be able to make this.
They find it difficult to identifyat GP level for example.
So you know you're not
I don't know,
I'm sure it could,I'm sure it could be improved
and I'm sure that the Carers Centrewould want to know.
(18:23):
But it's not very visible, it's not very,
it's not very easy,it still seems a very ad hoc system.
Yes. Yeah.
I mean you're either luckyor you're unlucky in accessing it.
Yeah, I think so.
I think, Chris, you're sayingthat about integration of us.
(18:44):
You know, it's not only integrating thoseto health and social care, but
social care itself is an integration. It's
lots of little bits of services.
It's also better integrationwithin one organisation.
Yes, yes.
This departmentsdon't speak to each other.
When we were collating evidencefor that House of Lords inquiry
(19:06):
we talked to other carersand theres this notion of being lucky,
did you manage to speak tothe right person and and also
the supportwould be temporary as well is that
things can be in placeand working for now. Yes.
Well, could a change of government,could a change of system, could it
not be civil again?
(19:26):
And actually what you mean isworking is changes.
And so I think this idea of thingsbeing based on good luck rather than a
and a widely accessible,equally available system,
is it as well when.
There's a situation occurs where
the police are brought in or safeguarding,brought in, it's
(19:51):
normally a breakdown of social care
and everybody saying, well,why didn't people recognise this?
Why didn't they speak to each other?
And they have these multi-agency reviewsso they all get together and discuss it.
Then you get the dreaded phraseat the end, lessons will be learnt.
Well,
(20:12):
it looks as though
these lessons are being learnt.
Is it because nobody wants to learn?
Is there no money to learn?
If they don't start learning,then it's going to continue.
Absolutely.
And the gap between those,there's a feeling that the lessons
have been learnt, so they've been learntoften the hard way, but they've not been.
(20:33):
But the learning from thesehas not been put into practice.
And I think that sense of frustration isit feels like these conversations
that we're havingaren't new conversations,
but we're not seeing the changes that.
We're coming up with much more regularitythese days
for a number of reasons,and if social care was more prominent,
then possibly wouldn't be the case
(20:55):
or that it was just more. Yes.
So in terms of impact,I think we've touched on this in some ways
in that there's the sort of rolethat you have of trying to pull together
lots and lots of services.
Which is an effort in itself.
Isn't everything being spent?
A lot of people in emailand and the kind of lack of responsiveness
(21:20):
so that if you are going to approachservice because somethings changing or a
situation has arisen.
Are you going to get the help you need oris this going to be a very long process?
So just think about kind of
what the impact on youas far as unpaid carers
Is there anything that we've not coveredthat you would say is kind of
(21:42):
it comes out of this invisibilityor this lack of.
Just the general health of itan unpaid carer.
Yeah.
Because it is stressful.
It's stressful that
you're looking after somebody
for years on end.
You really want to do it.
(22:03):
And by doing so, your health suffers.
And really
that's even a bigger aspect to theto the NHS as well. Yes.
If social care was is thereand it wasn't as invisible
as it is, people's health will improve.
(22:24):
I have a phrase that I usefor my mood at times,
and I don't knowwhether I would still have this
syndrome that I
get if I hadn't if I wasn't a carer.
And it's called a siteof suffering at the moment,
some of the low level despair.
And what it means is that it's therewaiting
(22:47):
all the time that I might get frustrated.
I am getting increasingly wearyabout my role,
and that is because I am getting older.
And but it always feels
that there's somethingsitting on your shoulder
waiting to happen or happeningor that you're dealing with.
(23:10):
And that's what I feel about,I suppose, the invisibility of a carer.
I could be in a supermarket by myself
and no one would knowthat I was an unpaid carer.
But I know it.
Yes. Yes.
So, yeah, yeah.
I'd have to go back to 1976
(23:32):
and not have my child and then work out
whether I was still the sort of personwho would suffer from low level despair.
Yes, butI think you could be in the supermarket
when no one knows your care.
But you know that you've got that phonecall to a particular service to make or
you wait for an email from or you've gota review coming up in a couple of days.
(23:52):
I think that's the thoughtthat comes to constantly,
always delivering your gradeand this idea of being in a meeting.
I mean, I go to Zumba class on a Wednesday
and I have to explain I it didn't more,but I had to explain in the beginning
that my phone would be left oneverybody else.
It might not topeverybody else. I've got their phone on.
I don't know that that carers,but my phone is on in case
(24:16):
wherever Gabriel is somebody telephonesto say
she's just had a fit or she's had a fallor something like that, can you fetch her?
Okay. Yeah. It's not going away either.
It's generally being recognisedfor quite a number of years now.
In Sheffield there are around 60,000
unpaid carers every year.
(24:37):
About 20,000 disappear,another 20,000 come on.
And since COVID is viewed
that 60,000 is now increased to 90,000.
And also, I think the amount of caringthat people are doing,
it's become much more intensewhere it may be a few hours in a week.
(24:59):
It's now kind of more regular daily. Yes.
Because other thingshaven't opened back up again.
Some of the supportthat the groups that people have relied on
a lotstill not happening because of COVID.
Well, there's now Long COVIDbut people are living longer as well.
So that means more complexhealth issues are come forward.
(25:22):
People with learning disabilities,even though they are
generally viewedas their early deaths of 20% below
normal deaths,they are actually living longer as well.
So the complexities with disabilitiesare going to be here much longer.
And because of the natureof the disabilities,
(25:43):
it means that the health and needs
more care than it waspreviously under a longer period of time.
Yet at the same time its their carers that
need some support Yeah. Yes.
So we've talked about whysocial care is invisible,
by the way, of the effortsin the what over years do is invisible.
(26:06):
We talk about what that means to you.
So what would weyou know, if we could wave a magic wand,
what would we liketo see and doing differently?
What do we think needs to to change?
And magic wand is the form.
That is what I put right at the end of my.
Yeah.
So where would that moneybe kind of going?
(26:29):
What would you like to see? Investment?
A It's a number of
there's a there's a lack of social workers
because of the burdens they've got,
because there's a lack there'smore pressure on the ones that's left
a lot of councils are having
to use agency social workerswhich are much more costly.
(26:53):
So that's the professional area.
Yeah.
But in social care, when a family carer
can't cope as long as it would like to.
They've got to pay carers and this isa real deficit of paid carers as well.
Yes, the money they get is
(27:16):
round about the National Living Wage orthey could be paid the real living wage.
But currently it's not much differencein national, £9.50
in the real living wage as £9.90
So there's only about a 40p difference,which wasn't generally the case.
It would be much, much lower what you get.
(27:37):
Yeah.
But even that doesn't compare towhat people could earn
or the lowgenerally low paid professions. Yes.
Perhaps much less responsibility.
Right. Is as well.
Well, what people are doingcompared to what they're being paid
just doesn't add up And I think
(27:58):
what's interesting about thisis, isn't it?
It's just those figures that you've quoted
and the fact that it is
a low paid occupationand therefore it's a low
status occupation,when in fact it ought to be
a highly valued occupation
(28:19):
and the recompense should equal that.
But it won't.
And I don't think it ever will.
So what you've got to do is
remarket it, if you like,keep using this idea of marketing.
But my whole thing is when you said,What could we change?
I think
the first thing that has to be doneis that we have to have a media campaign.
(28:41):
There are lots of programmes out there
about people with disabilities.
I tend not to watch thembecause I find them
deeply disturbing,
but there's very little madein those programmes
about the peoplewho support the people with disabilities.
They are hidden people going back to
(29:04):
the ethos of this of this podcast
and it's what we value
and what's out there and promoted
as a service is not valued.
The social workers are.
Bombarded by people like us
(29:26):
saying this is not good enoughand they know it's not good enough.
So it's it's a broken system.
It needs money,but it also needs awareness.
It needs a media campaignwith an explanation
of what being a carermeans to many different types of carers.
And why aren't we identified,why aren't we recognised?
(29:50):
Why aren't we supported?
And I think that's almost a philosophical
question. But.
Practically it is about money.
And I don't know how this government
or any subsequent governmentis going to find the will.
(30:12):
To support us financially? Yes.
Support the Support services financially.
Yeah.
I don't have great optimism
because we go back to the original things.
It's not very interesting.
It's not very exciting.
It's not like,giving you £400 off your energy bill.
(30:33):
Yeah. It's not a quick win, is it?
A lot of it needs to be unpicked and fixedand it's not going to be done.
we don't have
the magicwand, the way to do it overnight.
And it's not just a media campaignfor the population.
It should be a media campaignfor government because
sometime this year, one
(30:54):
governmentminister said that to help social care,
families should do more.
Quite frankly, that person is not livingin the real world
now because families are doingall they can and much more.
Yes. Yes.
At the last count.
In the U.K.
unpaid carerssaving the UK 139 billion a year.
(31:19):
And when you have a needs assessmentfor a person
unpaid care is not costed.
I believe it's not costedbecause It would actually show that
it is a much larger figure
than social care can provide.
I was also wonderingwhether there could be
some link to the Equality Act,the Equality Act
(31:43):
that is now an umbrella term for all sorts
of different inequalities.
But this isn't an equality. Yes.
And to make to put somesort of legality onto it.
Yes, I think it's something that carers UKhave discussed.
I don't know.
(32:04):
They do maybe a little bit hereprotected characteristics.
And that means that you would beand you would have the right to certain
protections through your employerthrough your health care things.
But yeah, I think you're right.
I think it's a notionthat be sort of explore and again
would increase that visibility
because it would it would give peoplesome legal protections
(32:24):
that would recognise the role and the waysin which that impacts on people.
And that will mean people have more health
inequalities, less access to employmentbecause people have to leave work.
So yeah,I think there is discussions around that
and it is one such way of,of raising the profile of protection.
That is to.
Some extentthis was done with the Care Act 2014
(32:50):
that within the act it was put down
not as a must but as a recommendation.
Yeah.
The first thing the government did
when COVID came was to dilute
the Care Actso that the responsibilities of councils,
(33:10):
if they so wished,they could apply for some of
the responsibilitiesto be temporary alongside.
Not many councils did.
Sheffield certainly didn't. The.
My guess was that it was the first thingthe government did.
We really the first thing the government
(33:32):
should have been doingis provide more money.
Yes. Yeah.
And I think the Care Act does cover someof the things we've been talking about,
as with the lessons learnt,we've not really seen interaction that way
and I think that's the frustration.
To get councils to do
to abide by the Care Act,you've got to take legal action.
Another aspect is that legalaid is being drastically
(33:55):
reduced in, you know, whether that was in.
Implicitly to
safeguard people, not to be legal.
Action on the government is as I guess
it's a costly process, it'sa lengthy process.
And really, unless a carerget another organisation to fund them,
(34:17):
they're not going to tell peoplewhat to do.
So it's as thougheverybody is against an unpaid carer
and people with care needs
So I think I mean,I think what we're saying is
that there is a long way to go,but there's a lot to be done.
And funding would be certainly vital
(34:40):
in that process in terms of funding.
People in various
poses, social workers, care workers,and also not just
funding more co-workers,but that that being your valued
occupation, that is reflectedin the salary that people get,
but also the sort of public esteemwe saw the clap for the NHS during COVID
(35:02):
and it felt like carers was bought in
at the last minute but actually wasn'tfully part of that discussion as well.
So this invisibility impacts on
not only the kind of support we get,
but how as a as a sector, its values.
And I think that.
What I'm talking about to finance also
(35:25):
the carer's allowance is mentioned
that the people really knowwhat the carers allowances
the it's not anit is not an allowance for caring
it's an allowanceto supplement people's income
by not being able to work as much so.
And the minute you get the statepension, it's taken away.
(35:48):
Again.
You still have to make a declarationthat you have it,
but in reality, you're won'tbecause technically on a state pension.
You lose an income.
Yeah, but you're still caring Haven't.
It's not a payment for caringNo, it's a payment for loss of income.
I'm just realising sitting here andit is an aside and it's very subjective.
(36:10):
I worked here atthis university for 28 years
and to protect
my health and sanity,I took retirement at the age of 58
and worked it outand there was an offer at the time.
But that's seven years of pension
contributions by me and the universitythat I lost out on, isn't it?
(36:34):
Yes. In order to
be be a full time carer.
Yeah.
Because I could no longerhold down a very responsible
job and juggle all the balls
and that perhaps Just like
when you retire through ill healthand you get your full pension.
That's the sort of areathat should be protected by law. Yes.
(36:56):
Because you're leavingfor a specific Purpose
to do a specific task.
Absolutely.
And the impact of needingto leave work on pensions
and then how well people's financial self
stability in older age than it isI think is a huge factor as well.
That means that people are makingdecisions during their working age.
(37:20):
That has implicationsfor their whole lives as well.
And so,yes, that's I think something that and
again probably isn't seen,you make that decision in the moment.
Do you don't then think 20 years from nowthat's Less pension than I paid into.
Yes. Yeah, yeah.
And if you're lucky to be able to
get carer's allowanceand do some work as well,
(37:44):
it's not a non-taxable benefit.
That's
great.
I'm not sure what the amount is,
but I think it's less than 70.
Yeah, it'ssomething like £68, something like
that. Not that I've had it for years.
It's welcome if you can get it.
(38:04):
But it's a certainlyIn the current climate,
it doesn't really help that much. Yes.
And also, like you says, it may not be
maybe the awarenessthat they were talking through.
If peope aren't identifying as a careror aren;t seeking support still
and then they would be missing outon a benefit.
They even if it's not, it's notthe way we'd like to see it.
(38:27):
It could be helpful.
They may not know.
I worked what the hourly rate was at onepoint was about five or six years ago
and it worked out to be 1.92 an hour
based on the minimum hoursof 35 a week right.
Now going to draw it to a close,I think because there's just
so much that I think abouthas been so fascinating still through.
(38:49):
But our discussionsas we already kind of suspected
that this is a huge,a multifaceted range of issues
that that ultimately impact on carersand on the people that they care for.
So this is and unfortunately,there's not one, one feature that we can
of see that there are a couple of keythings that could happen in this
(39:09):
funding act and an awareness and a see
when the profile of adult social careisn't it but thank you so much Chris
and there's still it goesit's been fascinating to hear
your thoughts and experiencesand certainly
it was a lot to think aboutand maybe maybe
we didn't I maybe not much hopeate the minute But if we were also saying
(39:31):
similar things are pushing this forward,hopefully we'll start to see some changes.
But thank you so much for your time.
The good thing is that actions like thishave taken place.
Yes. Which is often beneficial.
Yes. Hopefully in the end it was the samesimilar things to to make change.
But thank you.Thank you for your time. Thank you.
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