All language subtitles for disclosure.s01e09.can.cannabis.save.my.child.720p.webrip.x264-underbelly[eztv]

Hi, it's Lisa. It's Karen.
BOTH: We're in the Hague!

We're here for a few days.

Yes, and hopefully they'll be able
to prescribe some

medicinal cannabis oils with
THC for Murray and Cole.

So, today, the second doctor
we went to,

he has given us an emergency
appointment for tomorrow.

So, fingers crossed,
we're going to get this medicine.

Good morning, everyone. Morning.

We're checking out of this hotel
now.

And we are heading
up to see the doctor.

We've just left the doctor.

We've got... We've got it!
We've got the prescription!

Honestly, like, unbelievable.

We're so emotional right now.
I'm going to cry.

I can't believe it.

We've got it! We've got it!

This is going to help our kids,
hopefully.

Our next hurdle is getting back to
Edinburgh. Customs.

That's us just checked the bag in.

And we are standing
in the queue for security.

We're meant to board
the flight home.

Hi, guys.
So, that's us back in Edinburgh.

We got through no problems so we're
going to start our boys on this

medicine tonight.

First doors, as soon as we get in,

two hours before their other meds.

Let's get them better. Yep.

HE BREATHES WITH DIFFICULTY

This is Murray.

He's six years old.

He has Doose Syndrome,

a rare and difficult-to-treat
form of epilepsy.

He lies in a hospital bed,
he can't move.

He can be awake but he's probably
not aware that anyone's there.

He can't swallow, he can't eat,
he can't talk, he can't move,

he can't do anything. So he just
lies in a vegetative state.

Can't do anything at all.

You just have to sit and watch this?
Yeah, just have to sit and watch it.

And if he has a seizure, we just
have to comfort him as best we can.

What you're about to see,
you may find distressing.

It's OK.

It's OK.

HE BREATHES RAGGEDLY
It's OK.

Has it got to the point where you've
just thought,

"I'm going to have to
say goodbye to my child here"?

Yeah. In January, I honestly thought
that was going to happen.

I honestly thought
"That's it, he's going to die.

"How can anybody survive this?"

Mum...

Right, tell me - say, I...

I...

..love...

..love...

..you.

..you.

SHE LAUGHS

This is Cole. He's also six.

He has focal epilepsy.

Like Murray's, it's hard to treat.

Both boys suffer seizures,
which can cause brain damage.

When he takes these seizures,
how long do they last?

How many does he get?

How damaging are they?

Cole was taking up to about
16 a day. At his worst.

And he takes most of them
through the night.

Lisa documented
some of Cole's seizures.

You may find what follows upsetting.

HE BREATHES WITH DIFFICULTY

He'll convulse,
he'll click in his mouth,

his eyes will roll back, he'll
drop to the floor with no notice.

And his body will go rigid,
and these can last

up to two-and-a-half minutes,
is usually the longest.

What's that like for you,
as his mum,

watching your child go through that?

Awful.

It's the most heartbreaking
thing to watch.

And two-and-a-half minutes
has never felt so long

when you're watching your child
take a seizure.

And you're timing it, and you're
thinking, if it goes on longer

than five minutes, "I need to phone
an ambulance." It's just terrifying.

Watching his wee body shake...

Cole had never had a dream because

he didn't get to sleep long enough
or deep enough to ever have a dream.

Part of the heartbreak for
both mums is that,

for much of the boys' lives,
they were active and alert.

Although they were developing
more slowly than other children,

they were happy.

Did you like the fireworks? Yes!

But moments like these
have become less

and less common
as their conditions worsen.

Both mums know that doctors have
tried everything possible -

drugs, even brain surgery -

to try and lessen
the impact of the epilepsy.

But they say nothing is working.

It's like one minute you have a
healthy little boy, and the next...

..they're lying in a hospital bed,
close to death.

And you've tried drug after drug?

Drug after drug - nothing helps.

Nothing has helped.

Did you think you were going
to lose him? Yes.

Yes. I've...

I've never felt that for six years
but in these last

couple of months, I've never been
so scared that that was it for Cole.

Professor Helen Cross is a leading
paediatric neurologist.

She works every day with some
of the country's sickest children,

whose epilepsy doesn't respond
to existing treatments.

VOICE-OVER: Epilepsy is a condition
where individuals are prone to

recurrent epileptic seizures.

This means an involuntary
change in movement or behaviour,

the direct result of a change
of electrical activity of the brain.

It is a symptom. There are many,
many different causes of epilepsy.

And, therefore,
it's a group of diseases.

60% of individuals with epilepsy
may be controlled with regard

to their seizures with standard
anti-epileptic medication.

30-40% continue to have
ongoing seizures

despite our standard treatment.

One mother said to me,

"I just feel like I've been watching
my child disappear from the world."

I think it can be
very difficult for families.

They see their children
having recurrent seizures.

And if they have very frequent
seizures, there's no doubt

they may appear switched off
for many periods of time.

And when they're not making
the progress you may expect

a normal four or five or six
or even older child to make,

then that can be particularly
difficult, particularly

when you see other children of
a similar age making good progress.

Getting your new medicine. Me.

This is Murray last summer,
taking a cannabis-based medicine

called Epidiolex.

He was given it by
his NHS consultant

because other medicines had failed
to control his seizures.

Is it nice?

For a short time,
Murray had fewer seizures,

but soon his mum said his condition
was as bad as it had ever been.

Epidiolex was the only thing
that worked up to that point.

Yeah, it was absolutely brilliant

but after three months it just
stopped working, for some reason.

Professor Cross led the clinical
research

into Epidiolex in the UK.

She prescribes the medicine
to some of her patients

but knows it's not a wonder drug.

For some, it is a treatment
and a way forward.

But it's very difficult to predict
who that's going to be

and who that's not going to be.

But I have also seen, equally,
a number of disappointments

because families see that
this is going to be the miracle

and it makes no difference
to their child's epilepsy.

Really? Yes.

It doesn't work for everybody.

There are two main parts
of a cannabis plant that could be

involved in treating epilepsy.

There's THC and CBD.

Epidiolex is made from CBD.

THC is the part of the plant
that gets you high.

Until recently, medicines containing
THC weren't legally available.

The case of another boy with severe
epilepsy, Alfie Dingley,

helped bring about a change
in the law last year.

It looked like desperate families
would finally be able to get

medicines containing THC
prescribed on the NHS.

For the first time,
doctors can legally prescribe some

patients with medicinal
cannabis in the UK,

though restrictions remain tight.

It's now March,

five months since the law change,

and Murray's doctors still won't
prescribe THC.

Karen believes this drug is the best
chance to save her son

and is determined to get it for him.

This is the next step. And I can't
step back and watch my son

being this ill knowing there's other
kids out there taking this

medication and it's helping them,
and it's stopping their seizures.

I've got to try this.
I've not got a choice.

I've literally not got a choice.

My worst fear is that he just
stays in hospital.

That's how it's going to go on -
in hospital,

every 24 hours getting sedated,
then lying shaking when he's awake,

then getting sedated, sleeping,
then waking up and shaking.

That's no life for anybody.

You'd put your dog down
if your dog was like this,

and they're allowing this
for my son to be like this,

and they won't let him
try this medicine.

No, it's not going to happen.
I've not got a choice.

I have to help him.

The cannabis medicine Karen
and Lisa want for their boys

is legally available in Holland.

In March, they travelled there
to get it on prescription.

We've got it! This is going to
help our kids, hopefully.

Our cameras caught up with Lisa

the night she came back
with the drug.

Cole is home from hospital.

This is Bedrolite,
the medicine containing THC.

This is Cole taking his first dose
of medicine.

Head back, tongue up.

Tongue up. That's it.

VOICE-OVER: I've been desperately
wanting this medicine

for so long that,
when the doctor finally

said he was going to give
us a prescription,

I literally jumped across the table
and hugged him, and cried.

Now we're home and he's just had it.

And I just... I'm just desperate for
the results, to make him better.

I just want my boy back.

What's so funny?

Hm?

Nothing?

Without a specialist doctor here
willing to prescribe

the medicine to Cole,
former police officer Lisa feels

she has no other option but to take
the law into her own hands.

She's smuggling
the drug from Holland illegally.

I can't believe I'm now that person.

I was a police officer for ten
years.

A police officer for ten years,
and I've then just walked through

the airport and seen police officers
I used to work with, knowing

I'm about to pick up my baggage
that's got an illegal drug in it.

Which is just,
like, so far beyond...

..my imagination, I can't tell you.

How can it be that some parents
are willing to break the law

to get their hands on this medicine,

while the doctors who treat their
children are squarely against it?

I've come to Northern Ireland
to meet a family

who might help explain that.

Hi! Danielle? Sam from the BBC,
how are you? Nice to meet you.

Danielle's daughter, Sophia, also
has a rare form of drug-resistant

epilepsy, called Dravet Syndrome,
and, like Cole and Murray,

suffers from severe seizures.

There's been a couple of
very, very bad ones.

If the seizure lasts more than 20
minutes, she's in a status seizure.

Which means what?

A status seizure is a seizure
lasting more than 20 minutes,

and they are the ones that we can
potentially lose Sophia in.

So, the emergency meds we administer
at home, they don't stop it.

Whenever she arrives at the
hospital,

all the meds they give her...

And eventually they will
induce your child into a coma to try

and stop it. And, if they continue,

they could potentially pass away
from it.

You've been told that? Yes.

Danielle has given us
a video of Sophia having a seizure.

What you're about to see,
you may find distressing.

You're OK, my darling. Sophia.

Sophia!

Right, we'll transfer her
to that bed.

There was once she came out
of a seizure and she looked at me,

and she just said one word,
and honestly I did break down.

She said to me, "Mummy, enough."
And my heart just sank.

And I was, like, "I know, darling.
It's just not fair."

How do you explain to a special
needs child exactly what's going on?

And, for Sophia, it is like
a second... You know.

She understands, because she's had
it from a young age,

she gets excited to go
to hospital for an appointment...

..because she sees
the staff as, like, her friends.

And a child shouldn't
feel like that.

She doesn't really know much...

..much difference.

This is Sophia being rushed to
hospital last summer,

suffering a severe seizure.

She was put into an induced coma.

I'm on my way to meet Sophia.

But the girl who I see
walking out of school

is a far cry from the one
I've seen in the videos.

Hiya, Mummy. Hello, sweetheart.
Did you have a lovely day?

I never expected to see you
walking out of there...

..after everything you've
been telling me.

God love her, some days she comes
out, her coat's

hanging off the shoulders and she's
had a really, really busy day

where she's had PE, outdoor play,
soft play and other therapies.

So...

Is this a different girl than...?
It definitely is. Yeah.

As well as her usual drugs,

Sophia has been using medicine
containing THC for just over a year,

and Danielle believes it's the THC
that's made a huge difference.

So, without medical cannabis, she...
she would be where?

God forgive me, probably
in the hospital right now,

and that's...that's just
the be-all and end-all of it -

or she'd be lying in that bed.

Really? Yeah.

She would either be wiped
out from the anticonvulsive drugs

that she was getting prescribed
on the NHS before... Yeah.

..that were making her
lie in a corner.

As I told one of the consultants,

my daughter is not going to be
sedated and left to lie in a corner

just so it's an easier job for you.

As cheeky as that might sound,
that's how I felt as a mother.

Well done! Two baby sharks.

You want cuddle-wuddles?!

Aw. Two baby sharks!

Good woman.

THEY LAUGH
She's proud of herself!

She's so proud of herself!

It's three weeks
since their first trip,

and Lisa and Karen
are back in Holland.

They're here to restock.

This time, they've allowed us
to follow their journey...

..and it's about to become clear

that it's not just being smugglers
that's putting pressure on them.

Buying the medicine
is costing them a fortune.

1,780 euros.

We're not in a hurry, so...

That's more than £1,500.

The mums have fundraised
to pay for the medicine -

but the money has nearly run out.

Thanks very much, see you again.
Bye. Thank you.

We're going to need to start
looking at three grand

between us every month.

1,500 each. We're going to have to
start fundraising seriously.

Yeah. So, we'll give up...

I mean, we will give up holidays

to get that medicine
for our kids, anyway.

I'd sell my house. Aye. I would.

I can't let him get sicker.

I need to get him better, and...
Mm-hm.

..there's nothing else for it.
We just need to keep going.

We just need to find the
money from somewhere...

..and help them. Yeah.

A week earlier, Lisa and Karen
joined a protest in London.

Families are angry that, despite the
law changing five months earlier,

doctors still won't prescribe
the medicines

Lisa and Karen
are smuggling into the UK.

Alfie Dingley's mum, who helped
secure that change in the law,

is leading today's protest.

There's not been one new
prescription issued

since the 1st of November,
when the law was changed.

Many people are suffering,
many children are very, very sick,

and their doctors are denying
them prescriptions

because they're telling us

that they cannot and are not allowed
to prescribe this medicine

to their patients.

The Health Secretary for England,
Matt Hancock, arrives.

He's quickly cornered
by angry parents...

Excuse me, Matt Hancock. Yeah.
My son is on Epidiolex.

MAN: Hold on...

..and it seems they are getting
their message through.

I've heard enough to know that
something's got to change. OK?

So, please, you can...

I want to hear the stories,

and I want to hear directly
from you, OK?

But let's try to work
together on this. Thank you.

I understand the frustration and
the pain and how difficult it is,

and I can't imagine how - especially
when it's there within your grasp

and when we all thought this problem
was solved in the autumn...

What I do have is the ability

to make sure the right questions
are asked

and the right evidence
is brought to bear,

and that's what I'm going to do -
and now I really do have to go.

Thank you, Matt.
Thank you very much. OK.

Despite the law change,

across the UK only three families
have had an NHS prescription

for medicines containing THC.

None in Scotland.

The families know that they are
allowed these drugs by law.

The doctors know that they could be
writing these prescriptions

if they wanted to - but they're not.

The families want to know why.

I'd like to know why.

I've come to London to find out more

about doctors' reluctance
to prescribe THC.

They say they can't,

because there isn't enough evidence
that it works -

or is even safe.

To get it free on the NHS,

the NHS have to agree to pay for
these products.

They're only going to pay
for products

where there's evidence of efficacy
and safety,

and there wasn't evidence
of efficacy and safety,

so even if you prescribe
the product,

the NHS isn't going to pay for it,
so that's problem number one.

Problem number two
is that clinicians

are only going to feel confident
about prescribing medicines

which they know to be efficacious
and safe for their patients,

and that evidence wasn't there.

And so there's going to be
a reluctance

on behalf of the clinicians,
I think,

to routinely prescribe
these products

because there isn't that evidence
of efficacy and safety.

The problem for doctors

is the medicine that Lisa and Karen
are giving to their sons

has not yet been studied in properly
controlled clinical trials.

There is some evidence
that it can help with epilepsy

and reduce seizures,

but there's also evidence
it can cause seizures.

You know, if we look at data
of individuals taking full cannabis,

and particularly with the THC,

there are concerns about the
cognitive effects of THC.

In a group of children
with complex epilepsy

where they've already got a degree
of learning and behaviour problems,

to add a component that we don't
know whether we need, for a start,

or indeed its safety, is something
we feel is not the way forward.

Mike Barnes is a retired neurologist

and the doctor who wrote
a prescription

for medicine containing THC
for Hannah Deacon's son, Alfie.

He's convinced the doctors
refusing to prescribe the medicine

have got it wrong.

So when these experts in
paediatric medicine... Yeah.

..paediatric neurologists,
say it is not safe,

there is no evidence of efficacy,
they're wrong?

They are completely wrong.

They may be expert at paediatric
neurology,

and I don't doubt that
for one moment,

and I'm not a paediatric
neurologist... Well, you see, so...

..but they're not expert at cannabis
medicine. But what you're saying

is that, yes, they may be experts
in paediatric medicine

and paediatric neurology, but
they're not experts in cannabis.

That's quite right. You have
become the expert in cannabis,

but, with respect, you are not
an expert in paediatric neurology.

I'm an expert at cannabis medicine,
and that's a very specialist field -

and I think a lot of other doctors
need to get that specialism

and then perhaps they'd understand
more about the drug

and the fact that there
is some evidence - not enough yet,

but there is evidence of efficacy.

So if they say there's no evidence
of efficacy, they're wrong. OK.

It is safe, generally speaking,

particularly the
high CBD products.

Not the high THC products
you get on the street -

the high CBD products which
counteracts the effect of the THC.

It is remarkably safe.

Edinburgh.

Murray's been in hospital
for 11 weeks.

After being seriously unwell,
he is starting to be more alert.

No!

No.

That could be because doctors
gave him powerful drugs

to bring him round -

but could there be another reason?

Karen's been giving Murray
the smuggled medicine

containing THC
for the last four weeks.

She's on her way to the hospital
to give him another dose.

She says she hasn't told
the doctors.

The hospital can't...

..can't...you know,
can't help me do it, basically,

because they've got to,
obviously, protect themselves

and protect the nurses.

Um...yeah.

I don't want to get anyone
into trouble, basically,

so I don't really want to
say any more.

Apart from, yeah,
it's me that's doing it,

so I've got to do something
to help him.

You were giving it to him
while he was in hospital,

kind of drawing the hospital curtain
around his bed and giving it to him.

Some people will watch this

and, I think, believe that what
you're doing is irresponsible,

and you are effectively
conducting...

..experiments on your child.

Well, yeah, it's like... Yeah,
like using my child as a trial.

As a guinea pig.
Yeah - the only thing about that

is I could argue
that there's other children

that are using this oil,
and it's helping.

I know families are desperate.

I understand families
are desperate.

But do you know families
are doing this?

Has this come as a shock to
you, or...?

No, it doesn't come as a shock
to me. You're aware of this?

Well, I don't know individual
families,

but I am not surprised,

knowing that there are families
going abroad to obtain.

And I try, where possible,

that if any family is sat in front
of me saying they want to do this,

to dissuade them from doing that,
and... Why?

Because I don't feel
we should be doing it

without careful medical monitoring
and intervention.

You know, we need to monitor
these children,

we need to assess these children,

we need to know
what other drugs they are on

to make sure that what
they're taking is appropriate,

and the drug interactions.

You know, the safety of the child
is what's first and foremost,

and giving them something
that we don't understand,

or we don't know
what they're having,

and we don't know...
I mean, in the short term,

they may not be seeing any problems,

but we don't know what's going to
happen in the longer term.

The Gibsons also
had to face the decision

whether or not to
lie to Sophia's doctors.

They moved the family
to Holland last spring

to try medicine containing THC.

When they thought
it was helping her,

they wanted to bring both Sophia
and the drug back.

They spent months getting a licence
to import the medicine

which meant they could legally
give it to their daughter

when they got back home.

I mean, you have deliberately done
everything -

or you took the conscious decision
that this was going to be done

playing by the rules - above
board, at every step? Yeah. Yeah.

The reason being,
we had spoke to a solicitor

and he said, "Look, if you try and
come back from Holland with this,

"you know, it essentially then
becomes a social services issue."

So, yes, we were desperate.

Do we want not just Sophia taken off
us, but also our other child, Mason?

Was that...? Was that a real fear?

I mean, was that... It was,
because... ..a real, genuine fear?

Yeah. You think
they would have done that,

taken that level of interest?

Mummy, look!
We honestly didn't know.

Look... Well done!

It was a case of yes, they knew...
High five!

High five, good woman.

They knew about us, and we were
always very open and honest.

We told them the dates
we were going,

where we were going to,
sent them the scripts back home,

everybody that was involved -

you know, Department of Health
and everything - at every...

..each and every single step
we were always open and honest.

But it was still in the
back of our heads

they could make an example of us.

But you weren't, you were not
smuggling it back into the country?

No, no.

Because some of the families
that we've spoken to and met,

that's...that's what they are doing.
Yeah.

Can you understand why they feel
they have to do that?

Because they're desperate
and they're frustrated

and they're watching their kids
slip away every day.

I can understand that frustration...
Yeah.

..and why it would drive
a mother or a father

to want to go and get
that for their child.

I mean, one of the most important
things for this family

has been the relationship

that they've managed
to build and maintain

with the doctors treating Sophia -

and it hasn't been easy, it's been
battle after battle, she says -

but they got there.

Dun Laoghaire,
on the outskirts of Dublin.

I've come here to meet
Blathnaid McCoy,

an Irish doctor who works in Canada.

There, doctors can - and do -
prescribe THC to epileptic children,

and that means she can keep an open
relationship with her patients.

If I'm taking care of someone's
epilepsy,

then I should be managing
all of their medicines, you know,

not 80% of them.

Another doctor, who might not
even be a paediatrician

never mind paediatric neurologist
or have epilepsy knowledge,

is prescribing
their cannabis medicine.

It doesn't make any sense.

I think if we know that families
are...want to try this,

and their kids are appropriate
to try it

and we're managing all of
their other medicines,

and we're checking their blood work

and making sure everything else is
safe, and being as safe as we can,

then I think it behoves
us to manage that piece, as well.

Dr McCoy doesn't think THC
is right for every child,

but at least she knows families
can tell her the truth

about what they're doing.

Across the water,
can doctors be so sure?

We would advocate that any parent

tells the clinician who's
looking after their child

exactly what they're giving
to their child.

I think they're frightened to.
I think there is a bit of fear.

There's no reason to be frightened.

Well, I think there is a
bit of fear,

because parents have said to me,
"What if they call the police?

"What if they go
to social services?

"What if they say, 'I'm no longer
your child's clinician?'"

So, what... So, I just want to know
what the child is taking

so that I can actually factor that
in to what I'm doing for the child.

There are drugs that we may use,
legitimately,

which will interact with
cannabis-based medicinal products.

It's much safer if we know
what's going on

than actually if parents
don't tell us.

And it's not... We're not trying to

be critical of parents in that
sense,

it's just we need to know
what's happening

for the best interests
of that child.

Just how complicated that can be
is clear back in Scotland.

When Lisa first gave Cole
the medicine containing THC

on top of his existing drugs,

he had more seizures
and had to go into hospital.

He couldn't walk unaided
and was fitted for a wheelchair -

but gradually, over a few weeks,
the seizures reduced.

Cole returned home
and was able to stand.

Look at this! Can I get a thumbs up?

SHE LAUGHS

It's now a month since Cole
started taking the cannabis drug

which Lisa smuggled in
for him from Holland.

Today, Cole has a surprise
for his mum.

SHE LAUGHS

You are a wee wido. Careful.

I'm OK.

You showing off?

Are you? Let's go.

Don't do that, you're going to give
me a heart attack!

Sit nice and watch the TV.

What did you get?

You're giving me a heart attack!

Right, I'll see
if I can find Ben 10 -

that might keep you occupied,
will it?

You...are a show off.

I'm a show off?!

You're the one trying to walk!

Mr Man.

You're the one trying to walk.

There you go, your favourite.

Who do you think
is going to be in this one?

Charizard?

Is that even...?
Is that Pokemon, actually?

I think that's Pokemon.

OK. Who's your favourite Ben 10 guy?

No, sit nice, Cole. No, sit nice.

No.

Sit nice and watch Ben 10.

No, you're going to...

Right, come on.

Come on.

Your wee legs...

Here, whoa...

Right, careful. Come on.

HE LAUGHS
No, Cole.

THEY LAUGH

Right, stop it.

What was that like, when he walked?

Oh, it was just amazing -

but he continues to
surprise me every day.

The same way the deterioration
went daily,

him coming back seems to be daily.

Tiny bits, bit by bit.

The problem I've got with Cole
is, he's determined,

so he's never going to lie down
to this, ever.

He's not realising how much
he still can't do,

so he's pushing himself
to his absolute limits.

Which is great for me,

cos I know he's never
going to just kind of take it,

but, yeah, it's amazing to see him
starting to try and walk.

It's just unbelievable.

He's a fighter.

Oh, he's definitely a fighter.

Definitely a fighter.

He's stronger than me,

cos at one point I was breaking
and he's still going,

and he's the one
that's been so sick.

It's also a big day for Karen.

After almost five months in
hospital, Murray is finally home...

..and his mum says
he's a changed boy.

This isn't a coincidence,

and this isn't me going, "Oh, yes,
this medicine's going to work,

"and it's working,"
and it's all in my head.

This isn't all in my head!

In fact, one day last week,

my husband, my lovely husband,

forgot to give Murray
his afternoon dose of medicine

and Murray had a seizure
at seven o'clock that night,

out of the blue - so, as much
as I was very annoyed at him

for forgetting to give him
that dose,

it was actually a good thing,
because it did actually show us

that this medicine
is actually doing something.

It is actually stopping
these seizures.

Some of the parents,
they are reporting to me

that the seizures
have slowed down...

..and they are seeing
their children come back.

This is the problem
with trying a medication

without a randomised control trial,

or without a trial methodology.

But they would say to you,

"That doesn't matter -
my child's now talking.

"My child is taking steps."

And that's what they're telling me.

I'm not taking away any benefit
they may see,

but we know from other studies -
for example,

when the medicinal cannabis
story first broke,

particularly with
regard to complex epilepsy,

Colorado in the United States
was one of the only states

where it was freely available.

Some parents could obtain it,

others moved to Colorado
to obtain it.

When they did a study as to who
demonstrated the most benefit,

you were much more likely to get
a benefit that was reported

if you'd physically moved
to Colorado

than if you'd lived
in Colorado all along.

Now, that does suggest that there's
a degree of investment

for which you've got to justify.

So what you're saying is
that these parents want it so much

that perhaps they...

The difference is what
they are seeing,

and maybe there is no difference?

There may be a component of that.

I'm not saying... In some children,
there may be a difference seen,

but some of them - I have seen it
within the cannabidiol studies

where parents report,
"He's more alert." You know,

there's no change in the seizures,
but he's more alert.

He may be less anxious.

You know, there are all sorts
of components,

which is why we have to look at it
in the appropriate way.

But is this transference from the
parent to the child? Could be.

The parent's more relaxed,

the parent wants to feel better...
Possibly.

Are you seeing the miracle stories
that we're hearing about,

that we're reading about?

Well, I mean...

In short, no.

Have I seen some families where...

..you know, the seizures have
gone away completely

and they've had significant
improvement with their development?

Yes.

Have I seen that with every other
drug that I prescribe for seizures?

Yes.

So, it's...it's another option.

It's good to have more options.

You know, we went from having two
drugs for epilepsy a few decades ago

to now having over 20,

and we're still pretty stuck
with a third of the kids

continue to have seizures
no matter what we give them.

We have diets, we have surgery,

we have implantable devices
and all kinds of things now,

but we still have
a good percentage of kids

that continue to have seizures -
so we need more therapies.

We need new drugs.

Is there a place for
medical cannabis... Yes.

..in these children? Yes.

Yeah, I believe so.

I think it's a very
complicated drug, though.

It isn't a single drug,
and we need more research

to better understand
exactly what should be in there.

Some desperate parents aren't
willing to wait for better studies.

They say their sick
children need help now.

I've spoken to one Scottish family

who've told me they're getting
cannabis oil with THC

not on prescription, but from
a dealer on the black market,

here in Spain.

Hi, it's Sam from the BBC -
how're you doing?

Listen, it's just to say that
we're outside the bar.

All right - thank you, bye.

Bye-bye, bye.

I've managed to make contact
with someone here in Spain

who I know is supplying
medical cannabis illegally

to families back in the UK,

and they agreed for me
to come out here

and they've said, they promised,

they are going to take me
to where they manufacture the oils.

So I'm just...

I think that's them, there,
at the cafe.

I meet her at a bar
in a town in southern Spain.

Hi, Sam.

Right, you're going to direct me.
OK.

So, we'll carry on up here.

She agrees to show me
her illegal operation

so long as she's not identified.

Through here? Yep.

First stop is the plants which she
uses to make cannabis oils.

Oh, goodness.

Right. So, Sam, this is the tent
with the plants in flower, in bud,

and as you can see by the sizes
of the buds,

they're all in various
stages at the moment.

This is the one
that's the most ready.

So this is what, how old?
Eight weeks old?

This is eight weeks-plus
into flower. Right, OK,

and these will be taken from here..
And, well, they will be dried here

and then they will be taken to
the lab to be processed into oil.

Years ago, I made a programme
about cannabis farms in the UK,

and that's exactly what this is -
a cannabis farm.

The people growing this may be doing
it with the best of intention,

but nevertheless it's illegal,
it's unregulated.

I can't even tell you
where it is in Spain,

because of the amount of trouble
they would get into.

They would tell you
that these plants are the answer.

Next stop is the lab
where the oils are made.

This is the bud, the branches,

and these are the buds
that come off of it -

and the medicine, the trichomes
that we are extracting

are on those tiny little hairs.

Can you see the tiny little
dots reflecting?

Those are called trichomes,

and that's where
the cannabinoids live.

That's the strongest smelling...
Is it?

The dried cannabis is broken up
into small pieces.

It's then mixed with a chemical to
draw out the active ingredients...

..before being filtered
so that only a liquid remains.

So, you are making, in this lab,
medical cannabis,

CBD Oils, THC... Yep.
..and a lot of it for the UK...

Yep. ..and you are shipping it back
to the UK somehow...

Yes, it's getting back to the UK

for the people who need it -

and sometimes it doesn't get back,

but we make our best efforts
to make sure it does.

Sometimes it doesn't get back
because it is...?

Seized at Border Force.

The end result
is a thick, sticky oil.

Marie charges up to 600 euros
per syringe.

She says she makes the oils because
she had used cannabis herself

for a medical condition and was sick
of buying from street dealers.

I wasn't trying to make money.

I was a poorly person

who was ripped off left, right
and centre for cannabis,

any cannabis products, whilst I was
trying to get myself well again,

which is why I taught myself
to grow,

which is why I taught myself
to make oil.

And then I'm like,
"Well, I want to help other people."

I don't want people suffering
in the way I did,

because there's nothing worse
than buying something

thinking it's going to help you
and it actually makes you worse.

You might have thought the change
in the law

would have reduced demand
for this black market cannabis.

Quite the opposite, she says.

Look, the law changed last year.
Yeah. What changed for you?

An increase in people
asking for THC meds.

Really? Yeah. Why?

Why? Because they're suddenly
understanding

that if the government are saying

that we are going to have
legal medical cannabis

then it can't be as bad
as they said it was.

But the problem that I then see...
Yeah.

..is that once it leaves here...

We've got no control
over what happens to it, no.

You've got no control... No.

..and it is being used
by desperate parents

with desperately sick children.
Mm-hm.

But we do the best that we can
to provide a quality product.

It would be sent as a
diluted product

with recommendations to be very
careful with your dosing protocols,

but we try not to take too much
part of what goes on from there,

because I don't want
that responsibility.

My bit is to help them,

but I would rather parents produce
their own plants

and made their own oil
under guidance

rather than me having
to be part of that process.

Back in the UK,
I wonder whether specialists

are aware of the lengths
some parents are going to.

I think going to street dealers,

going into the black market,
is a bad idea,

because these products are not
pharmaceutical grade products.

We don't exactly know
what's in them.

We don't know what are their
constituents,

how much THC, how much cannabidiol.

There is a very real danger,
I think,

that these children would
be harmed if people do that.

The medicine Cole is getting
has been prescribed by a doctor -

albeit one in Holland.

It's costing Lisa a fortune,

and she's breaking the law
to get it.

She needs a long-term solution and,
for her, that means political help.

RECORDING: Dr Lisa Cameron.

Many thanks, Mr Speaker.

The Secretary of State
will be aware of the case

of Cole Thompson, age six,
in my constituency

who has battled repeated epileptic
seizures every night

and has had terrible periods
of deterioration.

I have to say that parents
don't have the energy

when they're looking after a sick
child to battle the system,

because it's a postcode lottery,
and it can't go on.

He's become a bit of a celebrity,
has our Cole.

I just wish it was for something
a wee bit nicer

than fighting to get him something
that he should already have.

I feel privileged that people are
listening to us,

and getting our story out there,

but at the same time, I wish I
didn't need to.

I would take away it all
just to have a healthy wee boy,

that I could do just normal things
with.

Karen and Murray are also
in the spotlight.

Today,
she's taking part in a discussion

at the Science Festival
in Edinburgh.

The government are saying,
clinicians can prescribe it

and clinicians are saying,
"No, we can't."

"Clinicians can prescribe it!"
"No, we can't."

There is just... This is all that's
happening. Thank you very much.

And then to our scientists, here.

What do you think
we need to do next?

She is sharing the stage
with Professor Mike Barnes,

clearly a passionate
advocate for medical cannabis.

Probably, the whole plant is more
effective than the isolated bits.

And that's what people,
children with epilepsy, for example,

are finding that the full extract,
as it's called,

is more... Better, works better,
than the individual bits.

Professor Barnes also has
a financial interest

in the drug.

He's involved with several
companies that stand to

benefit from a growth in the market
for medicinal cannabis.

Do you stand to gain financially

if the drugs become more
widely available?

I have, it's public knowledge that

I have worked with a company to get
an import licence into this country,

and if I get an import licence,

I would stand to profit from that,
yes.

I don't think... I don't see
an issue with that, to be honest,

because, again, what I've
done in the media, I like to think,

is promote the use of cannabis
for those that need it.

And if people
want to come into this country

and say we need to establish
a cannabis industry,

and if I can help not only promote

cannabis for those people
that need it,

but promote the industry
that has to be behind it,

and the infrastructure behind it,
I don't have a problem with that.

That industry is campaigning
hard for cannabis to be

used for all sorts of illnesses,
not just epilepsy in children.

OK, everyone, thank you so much.

Now what we need to do, we need
the photos up really high,

and if you can stay walking
until you...

The End Our Pain campaign

that Lisa and Karen joined is
a professional operation.

It was founded by lobbyists
who wanted to take

the cause of medical cannabis on.

They part-funded it themselves.

Some money also
came from a venture capital fund,

which sees a lucrative
future in cannabis.

End Our Pain approached
Alfie Dingley's mum

and helped her successfully campaign
to change the law last year.

Professor Cross is worried that
epilepsy has now become the focus of

a wider campaign to legalise
cannabis more generally.

I am concerned that the
plight of the families is being

used for perhaps other agendas.

I believe there is
a lot of commercial interest amongst

different individuals,
and I think that makes it even more

muddy for the families,
to be honest.

The most prominent of
those families was Alfie Dingley's.

Hello.
Hi, it's Sam from the BBC.

VOICE-OVER: His mum is paid

by a chain of private clinics that
want to prescribe THC.

A part-time role that she says has
no bearing

on her public campaigning.

Are you being manipulated?

Absolutely not. Erm,

everything I've ever
done for my child is about love.

And it's about a love
of a mother for a little boy

who has severe epilepsy.

And I want him to live -

I don't want to bury him,

I don't want to watch him suffer

and I don't want to
watch my family suffer.

And I'd find it quite
offensive to think that

I would be coerced
or even led by money.

There are arguably commercial
interests behind

Professor Cross, too.

Her department was paid by
the drug company GW Pharma

to trial Epidiolex,

the legal CBD drug
available in the UK.

I can honestly
say from my point of view, yes,

I have worked with GW Pharma,

which is a pharmaceutical company,

but I have worked as an investigator

and I have worked as an adviser,

but have never received any direct
payment from the company.

You have never been
paid by GW Pharma?

No, any monies that have
come from being an investigator have

gone to my department,
which is normal practice.

So is there a conflict of interest
there at all, then?

I think it's called a disclosure,
rather than a conflict of interest.

I have that sort of relationship
with many different drug companies,

in evaluating new treatments
for children with epilepsy

and I would do the same

if I was moving forward with
a CBD with THC product.

Ya-ay!

HE GIGGLES

It's now been more than three
months since Karen

and Lisa first travelled to Holland
to buy the cannabis oil

which they were convinced
would save their sons.

Can you tell me what age you're
going to be on your birthday? Seven.

Seven? Oh, that's good, you're going
to be a big boy.

What's mummy's name?

Karen!

Oh, that's nice.
Who does Mummy love?

Me! Oh, you!

HE SINGS

Lisa and Karen are adamant
they're doing the right thing.

But the potential consequences
of what they've done

are never far from their minds.

What are you frightened of,
about all of this?

Losing my kids.

Because when this programme
is broadcast,

you will be outed. There's no hiding
place for what you've done. Yeah.

I believe that I've kept every
document as evidence that this is

the right decision for Cole.

I am terrified that social work
get involved in my life,

because I've never had any
social work involvement, ever,

never had any police involvement.

And I hope that get the backing from
the medical professions that I need,

to show that,
OK, I made the right decision.

They could make examples of us,
but what would be the gain in that?

Do you know, all we are trying to do
is help our kids.

We are not silly, you know?
We are not irresponsible.

We've actually done it quite
responsibly,

we've went and got a pharmaceutical
grade product.

We approached
Greater Glasgow Health Board,

responsible for Cole's treatment,

but they said they couldn't
comment on his case.

Lothian Health Board said they
couldn't talk about Murray either

but they did agree to discuss
the dilemma

that doctors find themselves in.

These are really difficult
situations,

but the most important thing
is to remember

the child at the centre of this,
and really, to make sure that

everybody looking after that child
knows what's happening,

and has a chance to discuss it
openly and transparently,

what the best things to
do for that child are.

If you discovered that a parent was
dosing their child...

Mm-hm.
..what would the implications be?

The hospital has to take steps
to make sure that the child is

looked after as safely as possible,
and to discuss that with others

who have a relevant
interest in safeguarding children.

So you mean...

So that would depend on the
individual set of circumstances,

but there would be a child
protection issue

to be considered in that.

Can you turn a blind eye?
No.

It's the end of May, and Lisa
and Karen are back in Holland.

They think this might be their last
chance to buy the medicine

containing THC, here.

Once the authorities know what
they're doing,

they could be stopped
at the airport.

SHE COUNTS OUT NOTES

They've dug into their own savings

to buy as much as they can,
while they can.

My one was practically 3,000 euros,

just short of, 2,947.

Cole's was 1,067 euros.

And, but, it's keeping him healthy,
it's keeping him...

And I would sell my house.

He's away back at school for an hour
a day, you know,

so we're on a path to...
We are on the right path.

SHE LAUGHS

It's hard not to be swept
away by what seem to be

big changes in the boys.

But these families know
cannabis is not a cure.

Murray has a seizure
while we're filming.

It's OK, just lie down just now,
Mummy will help.

It's OK. Stay here.

I know.

Both boys have,
so far, been too young

and too ill to understand
what's happening to them.

That's changing.

Right, what is it you want to know?

Do you have epilepsy?

Yeah.

You'll always have epilepsy.

Well, you do have dreams, now.

But, but your epilepsy won't
go away, baby.

It will always be here,
but it means,

see because you've got
special medicine,

it means that you're going
to get better.

And even though you'll still
have epilepsy,

hopefully you won't have any
more seizures.

And we'll be able to control it
a lot better, so it'll be fine.

I'm not blinded. I know that Cole
will always have epilepsy.

He will always have the underlying
chance that he will have more

seizures. He...
This isn't a cure. I get that.

London, last week.

There's been a development.

Lisa's heard of a doctor here

willing to write private
prescriptions for medicine with THC.

She's arranged
an appointment for Cole.

Karen and Murray also have one.

They've come to this private
hospital because,

until there's enough evidence
the drug is safe and works,

the NHS won't prescribe to them.

As the medicine would have to be
specially imported,

each bottle would cost the mums
three times as much as in Holland.

After an assessment of both boys,

the doctor finally gives them
what they want -

a prescription.

For Lisa and Karen, these
pieces of paper represent a victory.

For the first time,

a medical professional who deals
with paediatric neurology

has agreed that what I'm
doing for Cole is the right thing,

and that, in itself, is huge.

I'm delighted, the same as Lisa,
that now we have a prescription,

what we are doing for our boys,
is now legal.

We are legally allowed to give them
this medicine

that they so much need,

that we have proved that they need.

Look at them. They are just doing
absolutely amazing.

It's a relief.
It's another step on a journey.

A long way to go, still, but...

Really happy.

Love you. Love you, Mum.

New guidelines on cannabis
medicines are due in the autumn.

There are hopes that
trials for medicines

containing THC could be
under way in the UK soon.

Both the UK and the Scottish
government have told us that,

as things stand,

it will remain
up to doctors to decide

whether or not to write
a prescription for medical cannabis.

There's no doubt that physicians
are a bit in the firing line.

All we can do is do
the best for our patients

and for that, we don't have
a solution overnight,

but, over the next 6-12 months,

we hope that we can move forward
with a solution.

We are expediting our efforts to try

and make sure we get an evidence
base out there as soon as possible.

So that if there is something
that's there

that is going to be
useful for families,

and safe, then we are able to say,
"Well, there's the evidence.

"Yes, it does work. Yes, we're
happy that it's safe.

"Yes, we will prescribe it."

I can't see him having all these
seizures and do nothing,

standing back and doing nothing,

not when I know there's something
out there that can help him.

How can I just sit back
and not do something?

I don't regret anything I've done.

I don't think that I made any bad
choices,

and Cole's living proof.