18th June 2024
bbc.co.uk/accessall
Access All – episode 110
Presented by Emma Tracey
EMMA- We
are back by popular demand with another of experts here to answer your
General Election questions. On with the show.
MUSIC- Theme
music.
EMMA- Hello,
and welcome to Access All, the BBC’s weekly podcast where we delve into stories
about disability and mental health. I’m Emma Tracey, and this time we are back
with another of experts to talk about the things you said you want to
know on the runup to the General Election. We had so many messages from you,
the listeners, that we haven’t even touched the sides with our first , so
we’re back again. But do keep your messages coming. You can email accessall@bbc.co.uk, and you can find us
on the socials @BBCAccessAll.
We’ve
chosen our topics for today based on the numbers of messages that we’ve had
about each one. So, today we’re going to talk about mental health, disabled
children and young people and their families, the COVID-19 pandemic and the
fallout from that, and also housing. I would like to introduce my esteemed
of experts, here to talk about each of those topics. We’ve got Fazilet
Hadi, you’re back again, you were here last time. But remind people who you are
and where you come from in of disability and these topics.
FAZILET- Thank
you Emma, and it’s very good to be back with you all. I’m head of policy at Disability
Rights UK, and we’ve been campaigning with other disability organisations for
something called the Disabled People’s Manifesto.
EMMA- Okay,
brilliant. Lovely to have you back. Sam Carlisle, you help the Disabled
Children’s Partnership. Which is?
SAM- The
Disabled Children’s Partnership is a policy campaign group of 120 charities and
children’s organisations that fights for change for disabled children.
EMMA- And
you’ve also got a disabled daughter yourself, and you’re a journalist.
SAM- Yes,
so I’ve got a daughter, Elvi, who’s now 22. So, we’ve lived every minute of
this.
EMMA- And
Nil Guzelgun – best name I think in the podcast for a very long time – you’re
the head of policy and campaigns for Mind mental health charity. What does that
mean? What’s your job?
NIL- We
work both with people with mental health problems and on behalf of them to
campaign on issues that affect people with mental health problems, and take a
really holistic approach to doing that, looking at both mental health services
and improving to access mental health services, but also welfare,
employment and also for young people and marginalised
communities.
EMMA- Okay.
We’re actually going to start with mental health. And someone on X, formerly
known as Twitter, said that there has been almost a complete halt to mental
health provision. Now, waiting times for mental health services have shot up
according to the Health Service Journal; 8% of people are waiting more than 49
weeks to see a specialist, so that’s nearly a year. And if that trend continues
that could be the longest wait for any specialist that people will have. That’s
pretty strong stuff. Nil, which services are most overstretched would you say
in of mental health?
NIL- I
think we see a pressure on mental health services across the board. And we know
that both adults and young people, but particularly young people, are
struggling to access . I mean, if I take the numbers for children and
young people we know that since 2017 where the numbers were one in nine young
people had a mental health problem, and now we have one in five young people
and children who have a mental health problem but can’t get . So, the
numbers have increased drastically since 2017 and throughout the pandemic as
well, and yet access has become more difficult for people for example.
EMMA- So,
it was one in nine and now it’s one in five?
NIL- That’s
correct, yes.
EMMA- Right.
And why are children’s mental health services particularly overstretched? Are
they more overstretched than most?
NIL- I
mean, it’s a mix of two factors: one is a lack of investment and funding in
mental health services, and particularly for young people, but also the numbers
of young people who have mental health problems has increased. So, I think the
demand has increased, more young people and children acknowledge, and there’s a
higher level of awareness, which is a beneficial or benign factor. But also
there is not just the level of provided and the level of investment
provided to address that level of demand.
EMMA- So,
more and more young people are experiencing mental health problems, but also
there’s more awareness as well. What are the parties saying in their manifestos
that they’re going to about this?
NIL- Overall
the main political parties do commit to bringing in parity of esteem between
mental health and physical health for example. In of the detail I think
the key thing that we have been seeing is a across schools for example
so that there would be more mental health provided across schools to
give that early access when problems arise. And similarly we’ve also seen a
commitment to fund early hubs for young people. So, early hubs
provide access to mental health in a setting which is outside of a kind
of NHS service or a formal setting. And there are also other things like
employment or a youth club and it’s much more accessible for a lot of
young people.
EMMA- Let’s
not forget, you’re talking about mental health across the board, we’re focusing
on children and families, but older people are struggling too.
NIL- Absolutely.
We know that adults are struggling to access mental health services too, and
there is a commitment across the main political parties’ manifestos to reduce
waiting times and to increase investment and address some of that gap.
EMMA- Fazilet,
you’ve noticed an interesting policy from the Liberal Democrats in of
mental health and schools, haven’t you?
FAZILET- They’re
wanting to put a mental health professional in every school. It was interesting
to see all the parties, as Nil was saying, pick up mental health. Having said
that, my sort of general view is that disabled people and people with mental
health aren’t really seen by the two main political parties, Labour and the
Conservatives; the promises are quite vague. Interestingly the two, Lib Dems
and the Greens, have much more progressive policies in general that would help
all disabled people, including those with mental health issues. I think when I
was on your podcast last time I was saying I felt disabled people, the 16 million
of us are quite invisible; so we’re not invisible anymore. We are part of the
political discourse, particularly in the Green party and the Lib Dem manifesto,
nothing’s perfect obviously, Emma, but I really did feel they’d got to grips
with something. So, when the Greens say they’re going to invest 20 billion in
social care I thought yeah, that’s serious, they understand the scale of the
issue. When the Lib Dems say they’re going to bring in free personal care, end
institutionalisation, improve rights and incomes for carers, both paid carers
and unpaid carers, you know, these are real hard-edged commitments. I know
neither of those two parties are going to be the next government, but it still
means that those issues are on the table and we should still carry on fighting
for them as disabled people. But I think the main parties, Labour and
Conservative, are still quite lightweight in of what they’re promising.
EMMA- Because
of course the last conversation we had was before the manifestos came out. And
I’d like to think that some of our chat about the General Election and about
disabled people might have got into their heads a little bit, Fazilet.
FAZILET- That
would be a lovely thought!
EMMA- It
would. Now, Nil mentioned earlier the Mental Health Bill. As far as I can tell
the mental health charities and people around mental health are kind of baffled
that that hasn’t been enacted yet. Have you been looking at that as well in
Disability Rights UK, Fazilet? Do you think the next government will enact it
quickly?
FAZILET- It
looks like it. Most of the parties are saying they will enact it. Disability
Rights UK and disabled people’s organisations aren’t as committed to it
probably as Nil is. I think that’s because we still feel it doesn’t go far
enough in, if you like, pushing on community provision and almost making
sectioning, forced detention the exception.
EMMA- Nil,
what do you think, does it go far enough? I mean, it’s supposed to tackle some
of the racial disparities, which are quite prominent really, they’re quite
obvious, aren’t they?
NIL- I
totally agree with Fazilet that there are aspects that can definitely be
improved. But I think our position at Mind is that we would rather see the
current proposed bill being ed, and then through secondary legislation or
additional measures it can then be improved.
EMMA- But
why do you want it enacted quickly? What would you hope that it would
immediately help with?
NIL- Once
some of the issues that were raised around detention and people having better rights
I think it would make a huge impact in that sense. We know that for black
people it could have an impact because currently the racial disparity means
that they are disproportionately affected and detained.
EMMA- Now,
let’s talk about SEND, special educational needs and disabilities, which has
been in the news a lot lately. We’ve just seen a news story on the BBC where
there’s a one billion shortfall of funding for SEND in England at the moment.
And we’ve had two BBC investigations recently about individual special schools:
one in the Wirral, an undercover investigation where children were physically
very badly treated, and another one in East London, where there was a lot of
problems around seclusion in padded rooms etc. But we’ve also had a lot of chat
about it when we asked people what they wanted us to talk about in the runup to
the General Election. Here’s a voice note:
GRAHAM- Hello,
my name’s Graham and I’m a primary school teacher from Southend-on-Sea. And
what I’d like to know is what the parties propose to do to increase the
available to children who have got special educational needs and also their
families as well, because at the moment the system isn’t working for anyone.
Thank you.
EMMA- And
Janice said that extra funding would reduce costly suspensions and exclusions.
And she’s also looking for more funding for training for teachers who want to
work in specialist provision.
Sam
Carlisle, unpack that [laughs]. There’s a lot going on there, isn’t there?
SAM- Where
do we start? Disabled children, neurodivergent children are not prioritised.
There’s not enough money in the system. The system is completely broken. The
SEND review that the government did themselves itted that. You’ve got areas
of education, health and social care that are all failing young people. And all
of that feeds into a picture of just letting children down. It’s just been
shocking. It’s the government’s duty to provide an education to children and to
make them feel safe, and at the moment we’re just not doing that.
EMMA- And
are there any policies that you’ve seen in the manifestos? What parties are
going to do something about this?
SAM- So,
the policy that obviously hits home with families is the Lib Dem policy – and
this isn’t my personal view – talking about establishing a national body for special
educational needs and disabilities, to provide for children with high
needs, increasing funding to local authorities for SEND, because that’s what it
all comes down to. I was really disappointed with the main parties; I just
thought we’d got to a point where everyone was talking about SEND, there have
been so many stories about SEND, and we just thought okay, now this is the
chance to lay out your proposals. And the two main parties have been a bit, as
Fazilet said, vague. There’s nothing really powerful there. The Conservatives
have sort of said things that they’ve already committed to, so we will
transform education for children with special educational needs by ending the
postcode lottery of , by delivering 60,000 more school places. That’s
pretty much what their SEND improvement plan said, and they haven’t done it
yet, they’re behind on that. They could be much more radical I think in their
offer.
EMMA- And
Fazilet, what do you think about that?
FAZILET- Well,
I think certainly they’re not tackling the 3 billion shortfall in the special
educational needs budget, never mind special school places, which is the focus.
There is obviously a very live debate about special schools and whether
disabled children should be segregated. Whatever you believe the mainstream
sector has to be more inclusive because that is where the majority of disabled
children are. And I agree with Sam that the political parties, the main ones
are very weak on this. There are slightly more warmer words in Labour about
doing more with local government and trying to improve the SEND system etc,
etc. But because the Labour party is so unwilling to talk about pound notes that’s
all just very kind of motherhood and apple pie at the moment. They’re not
saying they’ll invest 3 billion per year in SEND to make sure that disabled
children across whatever schools they choose to go to get the best education.
EMMA- Nil,
what about mental health provision for children outside of school? We’ve talked
a lot about school provision there, but what about the young people who end up
in wards that are for adults and the repercussions of that?
NIL- Yeah,
we know that it is really difficult for children and young people who end up in
a mental health crisis and therefore in a mental health hospital. And what we
know is that they are sometimes actually sent into a mental health hospital
which is not where they live, very far from where they live, which obviously
isn’t ideal at all and isn’t acceptable actually at all. And they are then also
in a ward with adults, and we know that a lot of young people find this
experience traumatising. And oftentimes actually when they leave hospital they
are then being promised to get a certain level of and type of
which doesn’t materialise.
EMMA- Anything
in the manifestos about dealing with this issue?
NIL- The
only promise that we did find is that there would be, in a very vague sense as
Fazilet and Sam have also highlighted in their responses, that there would be a
commitment to bring forward the Mental Health Act. But the detail obviously we
need to look at that and see what that actually means for adults and children.
EMMA- Before
we finish on this topic around disabled children and young people, I do want to
play you a message by Hugh Malyon who is an artist. And it’s about the
Conservative’s promise to bring in national service:
HUGH- I’ve
not seen anything about young carers not being listened to, being forced to do
national service.
EMMA- Hugh
goes on to say there about what about family who are young carers and
who might be gone for a weekend, a month, when the resilience of the family is
quite low and when they don’t already have enough because of cuts to
budgets around social work and other areas that might have helped the family. I
mean, Sam, what do you think about that?
SAM- Yeah,
we know the pressure on young carers, it’s a huge issue. I mean, you don’t want
to be relying on brothers and sisters helping out, and they should be able to
go on school trips and they should be able to live their lives without feeling
that they have to their brothers and sisters or parents if they’re
disabled. So, it will be another area, if this were ever to come true, it would
be another area where thought hasn’t been put into what that means for
families. But I think actually it’s unlikely to happen. It feels like it’s
written on the back of a cigarette packet that one.
EMMA- Fazilet,
I was so pleased to receive that message from Hugh. I really love our
listeners, because that’s a disabled person worrying about this stuff. What did
you think of that?
FAZILET- Good
for Hugh for raising it. I doubt the government, when Rishi Sunak announced it,
I don’t think they had a disabled person in mind, someone experiencing mental
health challenges, a young carer. I don’t know who their kind of image of a
young person is but it wasn’t any of those people. And so it was very much
without thought and it wasn’t an inclusive proposal. It wasn’t based on what
young people were telling them they wanted. It was just like a rabbit picked
out of a hat kind of thing. So, yeah, I
too hope that gets consigned to the dustbin of history.
EMMA- And
for disabled people as well, what about disabled people and national service?
FAZILET- Yeah.
EMMA- Will
you have an assessment to see if you can do a national services? I mean, that’s
me being a bit facetious, but.
FAZILET- Well,
exactly. They just didn’t think that through.
EMMA- Now,
one of the topics that we got more messages about than any other really was the
COVID-19 pandemic. Many disabled people say that it’s a pandemic that’s ongoing
for them but they’ve been forgotten. Here’s a voice message from Steph
Anderson:
STEPH- Many
thousands of people who are clinically vulnerable and/or immunocompromised are
in their fifth year of lockdown. This is most definitely a disability access
issue that needs to be pursued during the election campaign.
EMMA- Fazilet,
that’s interesting, isn’t it? I mean, there are still people wearing masks. I
interviewed Liz Carr recently, the actor, and she said that this very room that
we’re in right now is the first situation she’d been in in a long time without
a mask. But how many people are shielding still and minding themselves against COVID?
FAZILET- There
was a report in parliament last year, about November, that put the figure at
800,000, which is quite a lot of people.
EMMA- That’s
a lot, yeah.
FAZILET- And
800,000 people are really still very worried. It was called Forgotten Lives,
which echoes what the woman says really. Many of those people didn’t have the
vaccinations because their bodies wouldn’t allow the vaccination. I think also
now many of them are worried that if they do get COVID they can’t get easy,
quick access to the antiviral treatments. So, I think the woman is right that
the health service, if you like, isn’t in a position anymore, it seems to me,
to react quickly. And that builds the fear because then you think oh my
goodness, if I do get exposed I’m on my own and it could end in death.
I
think the other thing about COVID is that the last figure I saw was that 1.9
million people were living with some after effects of long-COVID. Some of that
figure, like 300,000 or 400,000 very, very serious long-COVID, almost like
chronic fatigue syndrome. And so those people, if you like, have been added to
the disabled community now, but actually find themselves in a position like a
lot of disabled people without easy access to health services, without good
access to social care, without reasonable adjustments in employment. I don’t
think anyone’s mentioned COVID in this election. The COVID inquiry, public inquiry
is still going on, and it will actually look at health services this autumn,
and so that may be another opportunity to put some of the issues being
mentioned on the political agenda of the new government.
EMMA- Nil,
what are the lasting impacts, from your perspective, on mental health of the
pandemic?
NIL- We
know that there has been a drastic increase of people who are trying to access
mental health . As I mentioned earlier, there are more children and
young people who have mental health problems, similarly with adults the waiting
times have reached nearly 2 million to access any mental health .
EMMA- And
do you think that’s lot down to COVID? Well, obviously the waiting lists got
longer when services weren’t available during, but also the pandemic and the
effect on people’s mental health.
NIL- Absolutely.
And we can’t bring it all back to the COVID-19 pandemic because some increases
we had seen before the pandemic, particularly amongst young people in of
the mental health prevalence. But certainly the pandemic has just catapulted
the numbers and increased the numbers drastically and made it a bit more
difficult for people who were maybe coping, and then obviously it tipped them
off to maybe struggle a bit more. And the cost of living crisis etc made it
even worse.
EMMA- Sam,
what lasting effect has the pandemic had on disabled children and families?
SAM- The
things that were taken away, so things like respite centres closed during COVID,
and a number of those didn’t come back. So, care workers left the system during
COVID, a number of those didn’t come back. So, families felt isolated,
was withdrawn, hospitals were struggling to catch up. We’ve seen the numbers of
teachers have reduced since COVID I think because of the pressure at the time
and increasing pressure. We’ve talked about mental health services. So, nothing
has returned to what was a pretty low base rate before COVID.
EMMA- Okay.
NIL- If
I may just add on that, because I think what we saw during the pandemic, and
this is what is so frustrating being in this situation where we are in a
General Election and looking forward to what the next government should be
doing, I think during the pandemic actually a lot of things that a lot of
charities had been campaigning on for a long time had been slowly implemented
such as, for example, better sick pay provision to enable people who might have
COVID so that they can stay at home for example and do not need to go to work,
they were given a better sick pay provision. But similarly with the increase,
the uplift of benefits, which we know are inadequate for a lot of people who
receive benefits. And that really focused attention on our healthcare system,
not just mental health care system, but the wider healthcare system. And all of
that was then, after 2021, 2022 slowly eroded and we have come back to a state
of healthcare, all public services, as if there was never a pandemic.
SAM- What’s
terrifying is if that happens again I can’t see, you know, if we have another
pandemic what would they do differently and what is in place? And I know that’s
what the COVID inquiry is for, but there’s nothing in the manifestos about
that.
EMMA- Another
thing that the manifestos haven’t covered massively but something that we've
had a lot of messages about is housing and the shortage of adapted housing for
wheelchair s and other disabled people. Fazilet, Disability Rights UK have
been doing some work around rentals, and one in three disabled people are
living in unsuitable rental accommodation. Is that right?
FAZILET- The
figures are pretty shocking on housing. I think it’s something like only 7% of
the UK housing stock is accessible and there’s no actual way to find where that
7% is of them.
EMMA- Yes,
exactly. So, the housing doesn’t actually match up with the people, so there
could be lots of people in accessible houses that don’t need it and vice versa.
FAZILET- And
then you raise the affordability issue, we’ve seen rents spiral. Housing I
think is becoming more and more of an issue to everyone in the community, but
disabled people will have additional challenges. So, we see the big parties
saying “we’re going to build, you know, 300,000 homes a year” or they’re going
to build even more than that. Actually that target has not been met during the
course of this government, but anyway it’s in the manifesto that Labour will
build 1.5 million homes over the course of the next parliament, and the Conservatives
1.6. I think Labour they’re giving us the warm words about “we’ll work with
local government and make sure that a proportion of housing is affordable
social housing,” but they don’t commit to figures. I think the Lib Dems do
commit to a figure; they say that out of 380,000 homes per year they’d like
150,000 to be social housing. There’s also some proposals on upgrading the
energy efficiency of homes that you’d expect from the Greens. And I think the
Lib Dems also has that, but also a social tariff for energy, which we’ve not
seen this government introduce although it did promise it.
EMMA- So,
there’s plenty about housing, Fazilet, but not much about specifically adapted
homes?
FAZILET- No.
There’s nothing about 10% of new homes should be wheelchair accessible or 100%
should be accessible; that was something the Conservatives promised in July
2022 but they’ve just not implemented. Nothing about personal emergency
evacuation plans for disabled people, although we’re seven years now from the
Grenfell Tower fire, we do have a building safety regulator so there is some
hope for maybe people in high rise buildings. It is worth them ing the
regulator if they’re worried about not having a personal emergency plan.
EMMA- Sam,
I want to talk to you about housing for families with disabled children and
young people. But first here’s a message that we got about housing:
FEMALE- I’m
a 33 year-old wheelchair who was, up until recently, homeless for 18
months due to housing shortages. The provision for adapted housing is below the
bare minimum, with priority for ground floor accommodation, the majority is
reserved for over 55s. In my area there is a caveat to these age rated
properties of being disabled and over 45.
EMMA- Sam,
have you noticed a big issue for families? I mean, I have, I’ve seen loads of
stories. We had someone on last year where there were seven people living in a
one-bedroomed flat because they were waiting on a house to be ready.
SAM- Yeah,
I think , one of our member organisations, have a lot of calls about this.
And if you can’t make your home accessible or have then you don’t have
great expectations for outside of your home. There’s a big issue around – I
mean, certainly personally I’m going to talk about this – because looking for
where Elvi will go and live after college I’m so shocked, I shouldn’t be [laughs]
but I’m so shocked by the lack of provision for young people coming out of
college. Where are they going to live? Where is their wheelchair accessible
places that they can go to that’s got room for carers, where they can access
the things they want to access? I mean, I’m absolutely terrified of what’s
going to happen with Elvi when she leaves college. As I said, she doesn’t
sleep, so if she comes back to us that means me being awake 24 hours essentially.
It’s really depressing going out. Our local authority told me they didn’t have
any wheelchair accessible places or housing for her, they didn’t have any,
which I just couldn’t believe [laughs], it seemed extraordinary.
EMMA- Yeah.
We’ve run out of time big time. Now that the manifestos are out, all three of
you, what’s the most positive thing you’ve seen for disabled people in those?
Let’s start with you, Nil.
NIL- Goodness
me. I think it is positive that firstly all major political parties acknowledge
that mental health needs to be addressed, and they commit to creating parity of
esteem between mental health and physical health. It is also positive to see
that they are committing to introducing the Mental Health Act. But when you
look into the detail as to what level of they commit to it seems like
it’s nowhere near enough.
EMMA- Fazilet?
FAZILET- I
think the most positive things I’ve seen are in the party manifestos of the
parties that aren’t going to get into power [laughter], the Lib Dems and the
Greens. I do applaud them on being bold on personal care. And I do applaud the
Greens on saying that social care needs 20 billion extra per year. And I hope
that kind of more radical approach will seep into the next government.
EMMA- Thank
you. And Sam?
SAM- I
agree with Fazilet, the Lib Dems going to that place where they’re talking
about Ed Davy’s personal experience is really important. I think the Greens
also talking about transport for children to school was something that we
weren’t expecting but is something again that have campaigned on. But I
really want to see the two main parties take this really seriously, commit
funding. If the political will is there then there is no reason why they can’t commit
to funding on education, health, social care for young people.
EMMA- Fazilet,
Sam and Nil thank you for ing me. Thanks to my guests, Nil Guzelgun from
Mind mental health charity, Fazilet Hadi from Disability Rights UK, and Sam
Carlisle from the Disabled Children’s Partnership. Between now and the General
Election we are going to do our best to interview someone from all of the seven
main political parties about their disability policies. So, keep your questions
coming on email accessall@bbc.co.uk. You can send us a WhatsApp, a voice
message or text message to 0330 123 9480, put the word “Access” before your
message so that we can find it more easily. You can find us on the socials
@BBCAccessAll. And do look out for our special series of political interviews
starting next week. Thanks for listening. Bye bye.
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KIRSTY- Reliable
Sauce is all about the stories on social media right now that we love.
JONELLE- Stories
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FEMALE- Obviously
you are a Jenny. How do you feel about people referring to the General Election
as the Genny Lec?
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KIRSTY- I’m
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I’m Jonelle. We’re journalists in Europe’s biggest newsroom working on the BBC
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FEMALE- I
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JONELLE- Yes,
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KIRSTY- Wow,
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