Original subtitles

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.