29/09/2014 Inside Out West

Tonight, a story of inspiration a child's fight for life

and genuine human kindness that will change lives for the bdtter.

Lilly's remarkable fight against cancer means more children

in Britain will have the ch`nce of life.

It is a great joy to see solebody disease free, enjoying life,

growing up like they ought to be doing, and that's our goal.

Why is Bristol still one of the country's most divided cities?

And we're behind the scenes of the Bristol Biennial Arts Fdstival.

I'm Alastair McKee and this is Inside Out West.

Imagine your child has cancdr and now imagine one

of the most promising treatlents is not available on the NHS.

This was a story that so inspired child cancer ch`rities

that they've brought that treatment from the US right here to

We've had our victories but some battles are yet to be won.

Each parent at this gathering knows thehr child

might die from neuroblastom`, a rare childhood cancer.

The way of thinking around the world, literally, is that once you

relapse with high risk neuroblastoma you have no chance of survival.

What do you do when respectdd foreign doctors tell you thdy

The figures in America give a 20`30% extra chance

We had to raise funds to get our child to America.

It must be terrible to be in a situation where you thhnk there

are no options available here but might be available somewhere.

But by the end of the year, this same doctor will be administering

one of America's most promising trials right here in Bristol.

This is a story of faith, hope and charity.

How ordinary people dug deep and reached for the clouds,

cutting through the bureaucracy the NHS and the drug companies, raising

enough for one of the most promising trials to come to Bristol.

We have gotten to the point where we say, if someone

To understand why these tri`ls bring such hope, you need to meet

You can see how veined her stomach was.

Over the years I've been filming her incredible journey.

In 2011, NHS doctors said they could do no more

She was completely covered in floating tumours.

It spread to her brain and her spine.

We were taken into an officd and told, take some pictures,

make the best of her becausd it will come back and be lethal.

I sat on my stairs and scre`med I'll research it on the Intdrnet

Granny's laptop discovered a prestigious American cancdr

hospital offering a promising trial treatment.

About 75% of our children seem to grow up

and move on and neuroblastola is not part of their issues anx more.

Before that, unfortunately we had no survivors.

Lilly's 8H9 treatment at Memorial Sloan Kettering cost ? .2

Up to now, they have all bedn NED ` No Evidence of Diseasd.

It's amazing two years on, being here and seeing Lilly.

She's really wilful and she just loves life.

And at one point the NHS told you there was no hope.

Yes, they did, and if we had listened to them we

And that's why charities like JACK and Neuroblastoma Alliance keep

Here, Met and Essex police officers run a half marathon in New Xork

Richard Brown lost his son Jack to the disease, yet is still rtnning

There was no more applicabld treatment in the UK.

They couldn't define the disease and he was sent home.

You have big burly cops who have been reduced to tears.

Parents shouldn't have to btry their children.

Other European governments like Greece, for example,

pay for their children to come to Sloan Kettering for treatment,

but not the NHS, which leavds child cancer charities in

the awful position of picking which child they can pay to send here

It was a very costly treatmdnt she had to go for but she wouldn't be

As much as we would like to say we could send them all

abroad, it's just too expensive and we couldn't sustainably fund it,

so we are trying to bring these innovative treatments into the UK.

With ?300,000 raised, they `sked a medical panel to pick the most

They chose a vaccine from Sloan Kettering that hopes to teach

Three years into the New York study, 12 of the 15 children remain

It's a great joy to see somebody with a

high risk disease, had a relapse and everyone rights them off, and here

they are, disease free, enjoying life and growing up like thdy ought

By the end of the year, this trial will expand to the Brhstol

Available free on the NHS, the vaccine paid for by charity

Bringing a trial over to thd UK which otherwise would operate

in North America, I think is transformational

Without their funding we wotld not be doing this study.

It'll come to us eventually, but it will come five to ten years

But that would be too late for these families.

Although promising, the doctor understands why the NHS left

How could you spend this amount of money on something that is tnproven?

We are going to treat 12 patients with this money.

It's a matter of priorities and what realistically can be brought into

But there are still 13 patidnts who are alive out of 15

and I'd rather be in that group than perhaps the trial that says three

In this case we have very, very few genes that are altdred

Britain's Institute of Cancer Research welcome

the charity paying for a vital trial because drug companies

often see no profit in testhng their best drugs on rare child cancers.

Certain cancer drugs which are active in adult c`ncers

are not required to be testdd in children and therefore are not

Less than 25% of those drugs have reached children.

That is frustrating for clinicians, it's frustrating for parents.

So, against all these odds, Lilly is well and back home, but

The American doctors that rdversed the NHS' terminal diagnosis asked

only that the UK then provide them with regular, simple MRI sc`ns.

We've come back thinking her follow up is just going to be MRI

and they were saying, "No", they didn't agree with that.

They don't do that for their children over herd.

The best you can do for that child is to carry out

a few tests every three to four months for a couple of years so that

if you find something it's ` better chance of getting it under control.

Charity had raised over a million to save Lilly but the NHS

Only when the MacGlashans' LP demanded it was

It was really difficult to trust the British doctors again,

but a plan has come up now so things are a lot better.

She has changed the protocol here as well and it's amazing th`t they

are starting to bring the treatment over here.

Not just one of the treatments, they are getting the latest,

Not all trails succeed but it's little miracles like Lilly

that now put so much hope on the one in Bristol.

To get the latest on what's happening on Inside Out West, find

You can see what's coming up on future programmes,

get a glimpse behind the scdnes and tell us what you think.

A recent newspaper poll ranked Bristol as the best place to live

But a quick stroll around the city reveals that depends

Sally Challoner grew up in poverty in the city and

investigates whether anything has really changed since her chhldhood.

Bristol is one of the UK's most desirable cities

in which to live and work, home to leading organisations in

But it's also a divided citx between the haves and have nots

where suburbs of multi`millhon pound houses sit shoulder to

shoulder with some of the most deprived areas in the country.

The statistics for Bristol are shocking.

Over 25% of all children in the city live in poverty `

And the contrast between neighbouring wards hs

One in three children in Sotthmead lives in poverty,

whilst a mile down the road in Henleaze it's one in a htndred.

In South Bristol, over half of children in Lawrence Hill live

in poverty, one of the highdst figures in the entire country.

Do you think ` growing up in poverty ` that there's

Because where they see poverty, it's like they try to keep poverty

I have a lot of friends who are from sort of St Paul's, Easton.

There is options that maybe you don't have coming from them areas,

because you get judged as a person, so you don't have

the same opportunities as maybe someone from Clifton.

Earlier this year, Mayor George Ferguson published

the recommendations of his Fairness Commission, designed to improve

But with no money in the Cotncil coffers, how does he intend to bring

This isn't just about what the city does, it's about what we do

in partnership with communities with businesses, with other

And it's imploring me to go and knock on the door of

Central Government to get a better deal, because I thhnk

an awful lot of the difficulties that people face come out of issues

Are you not punching your wdight at the national table would yot say?

No we're doing really well, but getting Whitehall to make the moves

is really difficult, becausd they cling on to their power, and I think

when one's dealing with isstes like poverty, obesity, health, the wealth

differences, then we do need to have much more space

for ourselves to be able to deal with those issues in our own way.

I grew up in Hartcliffe, ond of the city's most deprived areas.

Of course growing up in povdrty you don't really know any different

it's only when you go out into the wider world that you re`lise

that maybe your education w`sn't great, your family doesn't have any

business contacts to give you an idea of how to get

into the employment market, your parents can't help you with

a deposit to get you onto the housing ladder, things like that.

So you start out life at a disadvantage and spend years

It is, but it's not a clear two part city in terms of North/South

as the picture is sometimes painted, although there is ` greater

And if you're poor in a rich city, you're relatively poorer.

If you're poor in a city whdre house prices are higher,

So there are some real issuds that come out of success that me`n some

peoples lives are not as good as they should be.

And yet you're pouring millhons into the Cycling City,

We're not pouring millions into those things.

Those are really good investments, and we're being rewarded

Every pound that I put into the arts, which you are refdrring

to, brings four or five pounds to the city directly by other leans.

But does that get to the poorest in the city?

That brings greater prosperhty to the city, more jobs,

But what is vitally important is that we more than balance that,

and we do more than balance that by putting the money

The sentiments of the Fairness Commission are laudable,

but at a time when there is no money available

charitably funded organisathons such as Kids Company are left to fill

We bring ?2 million worth of Children's Services to the city that

they don't have to pay for, and I think they're very conscious of it.

Kids Company was set up in 0996 to offer intensive support to what

they describe as "exception`lly vulnerable" young people in London,

and they chose Bristol as their first location outside the capital `

reinforcing the suggestion that the city faces serious soci`l

Even I wasn't aware of the stark differences between

And you don't really know it until you get into the housds.

Some of the areas where there's real deprivation ` council estatds `

have got a lot of grass verges, it looks quite nice,

but you get inside the door then you realise the poverty there is.

And what we do with Kids Colpany, the little ones who are refdrred to

us through the local authorhty, we go inside the houses.

And then what you find it's heartbreaking.

You know, somebody hasn't got a bed to sleep in, or no bedding.

You know, I couldn't go home at night,

and say right tuck in, you know my down duvet, knowing that there's

a child somewhere who actually hasn't got a bed to sleep on.

I did grow up with a mum and dad who both had addicthon,

Then my dad left, well left, he went prison for quite a while.

So my mum was just like trying to run everything.

She got her act together, h`d enough of London, moved here when H was 12.

My mum kicked me out when I was about 15 `

I was like not listening to a thing she was saying, not going to

school, and yeah I was just homeless so, Chantal from Safe Place/Kids

Company got me into college, I done a plastering NVQ Levdl 2

Ever since I've always poppdd my head in and said hello.

Some social commentators talk of their fear of

a lost generation of young people in Bristol, but has anything actually

Tessa Coombes is a policy specialist and forler

Well when I first became a counchllor,

twenty years ago in Knowle, the issues were exactly the same.

The same wards were the biggest problem, had

the biggest indices of deprhvation, and the low educational att`inment,

It's disheartening to look `t that and see that because you're thinking

20 years of initiatives and projects and programs,

And I think there are sever`l generations of people

in the areas of greatest poverty in South Bristol and elsewhere, where

They don't have the same aspiration level because they don't have

So a generation it's too late for some?

I don't think it's ever too late, but I think we may have missed some

But is the Fairness Commisshon the best approach to tackling these

Or does it just highlight the problems that everyone knows exist,

Bristol City Council, I must say, are in dialogue with us all

the time, and I think they're really really wanting to make things

I genuinely believe that because the conversations that we h`ve with

I think they are listening but there's a long long way to go,

To get a bunch of experts to give up their time

To look at a serious range of difficult issues, and my advice

to George, or comment to George would be try and prioritise because

there's an awful lot of things in there that if you try to do all of

it, you just won't succeed because that's where we always go wrong

We can't simply spend whatever we choose to spend, because we would go

bust, but we will try and t`rget the money where it's most needed, and I

take all the recommendations of the Commission extremely seriously but

we'll have to weight them to see what we can deal with

So we'll come back to you in a year maybe, and see what's been done

Well since my childhood, growing up in Hartcliffe,

it seems to me that nothing much has changed, so I'm not sure how much

Finally tonight we're behind the scenes of the 2004

With the recent cuts to arts funding, can the festival bd put

on with a minimal budget and boundless energy?

Today is moving day for a l`rge red neon sign.

It's spent the last four months living high up

Where it moves to has been decided by a public vote.

The whole event is part of ` 10`day festival of contemporary art:

It encompasses so many things ` not just drawing, painting, performance,

music, not just anything, it's loads of things and it can be

The driving force behind the biennial is

The team are really good and we're not doing it 'cos we want

to get paid ` that would be nice ` but we're doing it 'cos we really

And that belief in what thex're doing must overcome the perdnnial

Hannah is the full`time ` unpaid ` artistic director.

So with money for the arts in short supply, can the flddgling

Bristol biennial flourish in these hard financial timds?

One of the 50 or so artists commissioned by the biennial

It's a participatory poem so that means the audience will be `sked `

not to do too much, but to play a game of cards with me, maybd speak

some lines of the poem and they ll be asked to move throughout the

grounds of Goldney Hall and into the grotto itself to explore with me.

How does an artist like Holly make a living?

Through commissions like thhs ` through funding from the arts

There's a little bit of money that comes through that way

but I also teach to supplemdnt my income so it's not entirdly

The biennial needs funding from the Arts Council if it's to succeed

With just eight weeks to go before the launch, there's still

A big team meeting tonight ` just had news from our funding which was

unsuccessful but we've been working towards putting another application

in for a smaller grant, but we won't hear back for another four weeks so

our team meeting tonight is about our change of plans

and how we're going to be cttting back on our programme but m`king

sure it's really clear ` making it work for us on a lower budgdt.

We're looking at 22`23 projdcts so nine or ten fewer than wd were

This struggle for finance is a familiar story ` since 2012 the arts

council has lost 30% of its funding and has to make tough decishons

We ask applicants to demonstrate the quality of the art or the qtality

of the activity the level of public engagement 'cos clearly there's not

a lot of point in great art if everyone can't be there ` we ask

them to demonstrate the fin`ncial viability of the project

and we ask them to demonstr`te how they're going to manage the project

The cultural landscape in Bristol is fantastically vibrant

and fantastically diverse and that breeds an appetite

for putting on work and I think the biennial is an example of that

in that the work is quirky `nd there is a public appetite for th`t.

The festival's already capttred the public interest ` over 800 people

But the move across the citx centre was only possible th`nks to

Everybody that contributed or sponsored or is a partner

of the project is Bristol`b`sed ` so everyone is working for `

non`commercial rate, or nathonwide platforms say we'll give yot the

equipment at a reduced rate and badger electrical ` no one's

The biennial has over 40 supporters and sponsors including Bristol's

established centre for contdmporary art ` the Arnolfini.

We share a lot of ideas about contemporary art in gdneral `

wanting to bring contemporary art closer to people and have them

understand and appreciate what's going on and enjoy themselvds so

We work in slightly different areas which is great 'cos we work

in the same city and followhng different routes to a simil`r aim.

With just a month to go, they're waiting for news about their

second bid for arts council funding ` this time for a crucial ?05,0 0.

We found out we just got th`t ` that means we can print.

That's a really important thing for being visible

and our designers have been working incredibly hard and so it mdans we

can go to print and it means we can pay everyone a little bit of money `

It's not very much but it's a nice gesture.

In terms of hard cash from grants, sponsorship and ticket sales,

the festival is costing around ?30,000 ` but that fhgure

doesn't include people's frdely donated time and resources `

So it's full steam ahead towards the launch:

A biennial brunch is laid on to keep everyone in the loop and the

I was thinking originally about 30 but it does depend

on people ` how much time they've actually got it might mean ht's

He is performing under the suspension bridge

and we're going be leading over packs of people with binoculars to

come and view the work ` like a tour ` he's going to be below

with a couple of other creatures, sportswear / mythical creattre!

Sonic reverber ` you can play in this room.

With everything now in placd ` it's time for the launch party.

Obviously we all struggle whth other jobs to pay the bills but this has

been such an amazing experidnce and especially when artists tell you

we feel at home here ` thanks for the accommodation, thanks for that,

thank for this other, thanks for the lift, you did

It's really difficult not bding paid 'cos it causes a lot of strdss

The team are really good and we're not doing it 'cos we want

to get paid ` that would be nice ` but we're doing it 'cos we really

We have to be really clever to make sure everything happens

Welcome to the launch of BB 201 ` crossing the line all over the city!

Well that's just about it for this week but if you'd like to

keep in touch with what we're up to then you can find us on Twitter

But from me thanks for watching and goodnight.

Next week, why this developlent isn't living up to expectathons

Defies belief. Hello, I'm Sophie Long with

your 90 second update. A freeze on working-age benefits

for two years. That's among the Chancellor's plans

to cut welfare and the nation's debt if the Tories

win next year's general election. Pensions,

disability and maternity pay wouldn't be affected but Jobseekers

Allowance and child benefit would. Ann Maguire was stabbed to death

at a Leeds school in April. Today thousands attended

a memorial service for the teacher. Her family say they've been

comforted by the community.