Jamie Coulson meets two boys who both got life-saving proton therapy treatment - only one of which was funded by the NHS. And does NHS treatment depend on where people live?
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Tonight, how long should we have to wait
to get the medical treatment we need?
Plus, how do you get a giant wind turbine
Tonight, we need the children who have to turn to charity
What upsets me is how many families have lost children
because they didn't have proton therapy.
Also tonight, are we getting
We speak to the people waiting months and years for treatment.
The fact that I've had to pay for my treatment, it's criminal.
And later in the programme, how do you fit a massive wind turbine blade
Now, we all know that the NHS faces a crisis, but how do they make
heartbreaking decisions as to which children to treat who have
Well, Jamie Colson met two teenage boys
who are only alive today because they received proton therapy
But only one of them was funded by the NHS.
You wouldn't know it but they've been treated for cancer.
Both went to hospitals in the USA for treatment
But one was paid for by the NHS and the other wasn't.
So who decides which ones are funded for life-saving therapy
and what of those whose parents can't find the money?
I wouldn't be here if I didn't have it.
The funding's vital for children everywhere.
Without it, they're left with nothing.
Many people will have first learned about proton therapy
through the case of five-year-old Ashya King.
His parents were refused funding for proton therapy
They fled the country with him rather than undergoing
His parents now say he is cancer free after having proton therapy
These amazing 360 degrees gantries deliver the proton therapy.
They're hugely complex, 100 tonne machines.
This NHS promotional film shows off the future of cancer
But that vision is at least 18 months away.
It will be 2018 at the earliest before this proton therapy centre
in Manchester is up and running giving hope of life-saving
And a year after that, this centre will open in London
making a ?250 million total investment in a treatment that's
Alex Barnes looks like a typical 13 year old.
Three doctors walked in the room looking very...
They were very quiet and I thought, "Oh, God, this isn't good."
But never in my wildest dreams would I have ever thought
that they would have said, "Your three year old's got
Doctors in the UK treated Alex for two years with
chemotherapy and surgery but the cancer was aggressive.
Alex started 14 months of chemotherapy.
And then as soon as he stopped the chemotherapy,
Ros was told Alex's only option now was surgery and radiotherapy
but using the internet she discovered proton
"Well, it's not tried and tested really.
"You know, it's very expensive
"so they're probably only after your money."
And I said, well, you know, they can have my money.
If it doesn't brain damage my little boy
and gives him a better chance, I don't care about the money.
Through public donations, Alex's parents raised ?130,000
for the proton therapy in a matter of days.
But then they were then told he would need costly and complex
Luckily, the hospital in Florida agreed to pay for Alex's operation.
They said that they would be willing to
treat Alex as a charity case from a third world country for free.
And he was the last patient of that year
After the successful surgery, Alex underwent months of proton therapy
which didn't stop him treating the life-saving trip as a holiday.
If I'd have listened to the doctors in this country,
I think I wouldn't have Alex here today because his
prognosis was so bad and he was so young.
He was too young to have radiotherapy so had he survived,
his life would have been over anyway.
With conventional radiotherapy, photons are fired at the tumour
causing damage to all the tissue they pass through,
whereas proton therapy directs a sudden burst of energy directly
into the cancer, causing far less harm to healthy areas of the body.
I feel really lucky because I could have been dead or if I wasn't dead,
I could have been blind, deaf or in a wheelchair
Alex had his treatment at a time when the NHS didn't routinely fund
NHS England makes the difficult decisions about
which patients can go abroad for treatment.
And since 2008, 950 have qualified at a cost of
Over in Bridlington, Bradley Marshall
He received funding for proton therapy to a rare tumour
We actually knew that he had a tumour
And it was operated on and then we thought that would be
the end of it, but we found out it had grown back and it was crawling
And then we realised how serious things were.
Because Bradley was over ten years old by three months,
he didn't automatically qualify for NHS-funded proton
A panel of experts reviewed the case to decide whether they would fund
They said it would take about four weeks to come to a decision
and I think it actually took a very long six weeks.
He leads a normal life which, you know,
is everything that you always hope for.
He is continuing to have scans at the moment,
He's be happy young man that he should be and living the
I don't feel that it affected me at all, the way I am.
I won't be as tall as I was, but I don't really want
But patients like Bradley might not have to fly abroad from next year.
will open its own proton centre next August.
This huge and complex project will result in a system that treats
So, the proton beam, which is the treatment beam,
will actually be directed down this line into each of
three separate treatment rooms where the patients will be treated.
A powerful particle accelerator called a cyclotron strips protons
from hydrogen atoms and beams them out at two thirds
In six months' time the cyclotron, which is the size of a family car
but weighs the same as a jumbo jet will be lowered in through the roof
And in some places, the walls are 18 feet thick to prevent
The technology has been around for decades.
Several European countries have proton centres
I think it's actually a very good time to be
getting involved with proton beam therapy
because I've seen, over the last ten years,
a real evolution in the technological capability
Where we have equipment delivered here in the summer,
it will be state-of-the-art technology.
It could be argued that the NHS has made a rather modest and
prudent investment in just two treatment facilities in the first
place, because this is the developing treatment,
so it needs to be evaluated by those two centres.
Is there a danger with this that it could be seen
as a magic bullet and everyone will want this treatment?
I think it's a real challenge to manage that expectation because
I think when you have a new technology, patients want the new
technology for their particular cancers.
Obviously, the NHS has a finite pot and
undoubtedly, I think we have to prioritise patients.
And those must be difficult decisions.
Those are difficult decisions because I think
in time it may well be that the indication for proton
We may not initially have sufficient capacity to meet that demand.
So until England has its own proton beam therapy services,
difficult decisions about who qualifies and who doesn't will
I was told that in 2013-14, our new proton centres
would be open in this country and I was absolutely thrilled,
What upsets me is how many families have lost
children because they didn't have proton therapy.
And if you've got any comments about tonight's programme
or you've got a story you think we might like to cover,
you can get in touch on Twitter or on Facebook.
We'll be telling you the story about how this huge turbine
blade was installed into the middle of Hull.
Now, there are many stories of people waiting months to get a
So are you getting the same access to care as
Well, Chris Jackson's been travelling the country to find out.
The NHS is facing the most significant financial
There are fears the service we have grown up with
Absolutely, there is a postcode lottery.
So, is the NHS in danger of ceasing to be a sational service were
everyone is entitled to the same care?
It is treating more patients, but is it becoming a postcode
lottery where access can depend on where you live?
It feels like my bones are actually screaming at me at times.
33-year-old Ben Franklin has Hepatitis C.
The virus can cause life-threatening liver damage.
I haven't been at work since April,
And I could possibly lose the flat over my head.
There are new drugs that could potentially cure Ben's Hepatitis.
Basically because my liver wasn't bad enough.
And that made me want to go out and just get
absolutely wasted and ruin my liver just so that they would treat me.
I wouldn't do that, but I wouldn't be
The money is there for just over 10,000 treatments.
It's claimed that means there are no queues in parts
of the North and long waits in places like London.
Two people with exactly the same state of liver damage could present
themselves in different parts of the country and in one they'll be
able to walk in and get hepatitis C treatment immediately, get cured.
In another part of the country, they may go there and be told,
"Sorry, you're going to have to wait."
NHS England told us it was regularly reallocating unused Hepatitis C
treatments to places with waiting lists.
The number of patients treated will increase by 25% next year.
Ben is taking the risk, of treating himself with cheaper
Yeah, ?1300 that I don't really have.
The fact that I've had to pay for my treatment...
Ben is hoping the generic drugs will cure him
within a matter of weeks, and he's not alone.
The Hepatitis C Trust estimates that around a thousand people in Britain
If you go outside, there's halos around the lights.
Lights and shadows, it's often hard to see things.
Gloria McShane has cataracts in both eyes.
Go up or down stairs with any kind of confidence.
Cataracts are supposed to be treated within four
Gloria, who lives in the North East, says she's been waiting seven.
It's too long, because there is such potential for accidents.
And there is such a change in a person's mood.
If Gloria had lived in Luton her wait could have been
Absolutely, there is a postcode lottery.
It's not about clinical need, it's about some places in England
having poor systems, having budgetary pressures and
That doesn't feel too national to me.
Gloria expects to get her operation later this month.
It really makes me angry because I think that it's
almost like the survival of the fittest.
Clinical Commissioning Groups, or CCGs, control health budgets.
It's claimed some are delaying treatments like cataract surgery,
Others are requiring patients to lose weight before getting
Postponing an operation in these circumstances
can save money in the short term, and whilst
the CCGs say this can be clinically justified,
the Royal College of Surgeons say it can't.
There is very good evidence that people are now
not getting elective operations which they desperately sometimes
require simply because of financial restrictions.
It is up to the clinicians to decide who should have
what treatments and therefore a bureaucratic
system which produces a blanket ban
It's also claimed new systems for vetting appointments
with specialists are another form of rationing.
Why are they treating their patients with such contempt?
Last month, MPs complained about a private company
being paid ?10 for every GP referral they stopped.
This is rationing by the back door and has
The same private company oversees referrals in North Tyneside.
We've spoken to doctors who say the system is
The GPs - who fear speaking out - have told us that cancer diagnoses
I try to get a patient referred to a dermatologist.
it was a skin lesion and rejected it.
It was a nasty, invasive skin cancer.
They're putting up barriers, they're using delaying tactics.
It's getting between the doctor and the specialist.
In a statement, North Tyneside CCG said
there was no evidence the system caused additional risk or delay.
Cancel referrals do not go through the system and are made
The number of referrals knocked back to GPs in England has risen
You can see the details of our research online.
Shortage and regional difference have always been part of the NHS.
Today, the differences could get much worse.
The NHS is under an unprecedented level of pressure at the moment.
If it doesn't get more funding, waiting times are going to
get longer and the quality of patient care is going to suffer,
so we will see different decisions taken in different parts of the
country and different services being available to patients.
So, is the NHS still a national service?
One of our most prominent medics is clear.
I think it matters because it leads to inequality in health care.
So some people will get health care for free
In a statement, the Department of Health
told us far from rationing, more people than ever
3,261 more cancer patients are being seen every day and
We asked the Health Secretary and NHS
The people actually paying for NHS services, the clinical
It's a national service with local variation based
Demographically, populations vary quite significantly
from town to rural, from county to county.
It's really important that we commission and respond to the
needs of that population on a local basis.
We have limited resources, so it's really important that we spend
them most effectively to get the best value for our population.
For those forced to take their own action rationing
Well, in case you hadn't already noticed, Hull is the UK's city of
culture and the celebrations began with a huge bang if you weeks ago
Just a few days ago, this huge turbine blade was installed
here in Queen Victoria Square, but how did it get here?
75 metres long but only weighing 28 tonnes.
You'd normally find it on top of a wind turbine in the North Sea.
But for ten weeks, this monumental structure, hand built
at the Siemens factory in Hull, is the biggest work of art
But not only that, its move has been one of Hull's biggest secrets
which is why its journey began under the cover of darkness
Transporting such an enormous structure is a logistical headache.
It's so big, no normal lorry can carry it, so a specialist haulage
team is using remote controlled vehicles.
It's quarter to two and the blade has just started its journey
from the Siemens factory into Hull city centre.
Crawling along at a walking pace, it's going
to take around six hours to get there.
It's going to be slow, but it's going to be spectacular.
The idea is that the installation of the blade will be a surprise
The blade needs to be in place before the city wakes up.
But just feet from the gate, there's a snag.
The communications cable connecting the two trailers carrying the blade
Without a replacement, the blade isn't going anywhere.
With the clock ticking, it's a delay nobody wanted.
Moving the blade is a massive undertaking and making it
The Siemens turbine factory is one of Hull's biggest employers.
It only opened last September, making the world's largest handmade
It takes weeks and hundreds of workers
to make each blade, with dozens of individual processes.
We have numbered sheets that we bring along,
keeping them as clean and uncontaminated as possible.
But the transformation from an engineering work
to artwork is so secret, most of Siemens' own staff
Vicky Arnold is among only a handful who know the full story.
And knowing you we're part of that with your team-mates,
When I'm driving in the car and I'm going down to the
seaside and you see the offshore and you see the onshore ones,
my kids look for them and, yeah, they all
say to me, "You built that, didn't you, Mum?"
And how does it feel to be an artist now?
When you saw through the media of the jobs coming
through, you don't expect to have a description as an artist.
it appears this work of art is going nowhere.
The blade is stranded metres from the Siemens factory gates.
A communication cable between the two trailers has snapped.
But after half an hour, it's repaired and the blade
can continue its two mile journey into Hull.
It's a major traffic hazard so the A63 into the city is closed.
And while the people of Hull sleep, the engineers do their best
At almost 4am, the blade passes The Deep, but there's
cutting down an extra lamppost on top of the 50 pieces of street
But the biggest challenge is just around the corner.
What's about to happen now will make the journey so far
All 75 metres of the blade have got to squeeze round this tight bend.
They've already taken out the streetlights,
but they still only have a few meters to spare
between the court building and King Billy up there.
With a collective sucking in of air,
the blade avoids knocking King Billy off his horse and trundles
Really pleased, it's really going well.
We've gone through some of the tightest
So, we're of the A63, which is the important
thing, so clear of the major highway an hour into Hull, so the
But this unusual cargo still has some way to go before
And while there's tension outside the factory,
inside Siemens, there's excitement amongst those waiting
I'm going to take my daughter, who is eight years old,
and let her have a look at it because we're in the unique
position where we can see this blade up close and personal
As it did the first time I saw one in this factory.
It's like being in a cave in here, isn't it?
I come from an art background and so when
I saw them in a sculpture-istic way, if you will.
So, for me, it's brilliant to see one of these
it's now well past four in the morning and the blade is now
And there's a tricky a three-point turn.
and Not easy when you're manouevering
the equivalent of eight buses end to end.
The haulage team now have one last sharp turn to negotiate, before
How does moving a 75 metre along a wind turbine blades
compare to the other jobs you've done?
It's a little bit tricky bringing it into the town, but it's...
Nothing out of the ordinary really for us.
What's been the most tricky part of this morning?
Probably bringing it down this last little
With the blade almost at the end of its journey,
the workers from Siemens can celebrate.
But in the square, the hard work continues,
building the supports to hold the first in a series of art
commissions for Hull's city of culture year.
Cyan, yellow and then go back to the white.
The artist behind it, Nayan Kulkarni, is best known
for lighting buildings, but for this project, he's trying
He's been visiting the factory for months, seeing how the blades
are manufactured and deciding how he'll display this one,
You won't be able to get this close to the
tip, but the root, you will be able to get right up to it.
But when it's not even made by the artist himself,
What were asking, by declaring it to be an art object is to challenge and
make people think about not only the values that it represents, but what
it means to place this kind of production and the Reed in the heart
of the city. It's after 8am, and as dawn breaks,
it seems Hull's biggest secret But there's still hours
of work left including the delicate process of lifting
the blade onto its two plinths It's now eight hours since the blade
left the factory. The stand is now built and the blade is making its
final manoeuvre into the square. Carefully hoisted and lowered,
it's almost there. But the tip just wont fit,
so after some fine tuning, it takes another six hours before
it drops into place. When you first had this idea, over a
year ago, did you think you'd ever be standing here and at least yet
happen? I was surprised at how easily people said yes and committed
risky. Very proud to be part of the risky. Very proud to be part of the
city of culture and part of Siemens having a hand in what's happening
here. I'll be bringing my wife and two boys down this afternoon to show
them what daddy does. It's quite daunting, seeing it sat out here
when you're used to seeing it in Selby factory. Bringing it out into
the daylight, it's even more impressive. As a local girl, I'm
quite thrilled. For me, this monument is quite iconic, but I'm
part of the next part of Hull's iconic structures, so I'm proud of
anything. Well, that's all from the UK's city of culture for now. There
will be plenty more to come from Hull in the coming weeks. In the
meantime, make sure you join us next week. When we will be meeting the
generation of black and Asian children who were bussed to schools
across Bradford and we call betrayal of red kites in the skies above
Leeds. -- we go on the Trail of red kites.
Inside Out Yorkshire and Lincolnshire presented by Paul Hudson. Jamie Coulson meets two boys who both got life-saving proton therapy treatment for cancer - one funded by the NHS and one not. We also look at whether the NHS treatment you get depends on where you live. And Anne Marie Tasker goes behind the scenes following the installation of a secret artwork for the UK's City of Culture.