22/01/2018 Inside Out London


22/01/2018

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Hello, I'm Sean Fletcher,

and welcome to a special edition

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of Inside Out London ?

in which we investigate

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the shocking truth behind

the drug sodium valproate.

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This medication

is widely used as an effective

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treatment for epilepsy.

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But for pregnant women it can have

dangerous side effects ?

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and in the past many mothers have

taken it while unaware of the mental

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and physical damage it was doing

to their unborn children.

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In this programme, we'll be

revealing how the authorities

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were fully aware of the dangers

the drug presented,

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but deliberately chose not

to inform pregnant patients.

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And we present new evidence

that suggests that ? tragically -

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the drug's harmful effects can be

transmitted down through generations

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of the same family.

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Deformed, disabled, damaged.

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Thousands of babies around

the world, genetically harmed

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in the womb by one drug.

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She can't go

to the toilet, she can't walk.

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She can't talk.

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We bring to light the records that

show the Government knew

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the drug causes birth defects

yet chose to hide the truth

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from expectant mothers.

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My mum should

not have had to have the children

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that were affected,

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if she knew that we were going

to have these conditions.

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Now, new scientific research warns

sodium valproate's toxic

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legacy could be eternal,

harming generation after generation

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In

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It's because I took that medication,

grandkids have been affected by it.

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So many people's lives have been

affected and ruined.

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This is all her fit medicine.

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This one here, I have

to give her three times a day,

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this one twice a day,

and this one twice a day.

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Every morning, first thing,

Karen carefully measures out

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the exact amount of medicine needed

to keep her daughter alive,

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to save her from falling

into a fatal coma.

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Brigit got hiccups.

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You gonna swallow it?

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I know it's horrible.

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You gotta swallow it though.

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Brigit is 19.

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She still plays with some

of the toys she had as a baby.

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This is the photo album I done

for Bridgit when we came home.

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Pictures of her in her cot

with her toys around

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because she could only just

lay there still with her

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head to the side.

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Brigit was born with a catastrophic

array of medical ailments,

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including brain damage

and spina bifida.

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She is paralyzed from

the waist down, even her bowels

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are not fully formed.

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She can't go to toilet,

she can't walk, she can't talk.

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She can't think for herself.

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I do all Brigit's overall care.

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I, I think for Brigit, I talk

for Brigit, I walk for Brigit.

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I live for Brigit.

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When Karen was pregnant with Brigit,

she was prescribed a high dosage

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of the drug, sodium valproate.

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She has epilepsy and the pills

were meant to control the seizures.

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But the powerful chemicals that

protected her health

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damaged her daughters.

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I pop these tablets

into my system and what happens?

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Six months down the line,

I'm under ante-natal treatment

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and then they turn round

and look at me,

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look at the screen

and turn round and say to me

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"What do you want to do you?"

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"You want to have an abortion, you

are carrying a spina bifida baby?"

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Like Bridgit, around 20,000 children

in the UK and thousands of others

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around the world are believed

to have foetal valporate syndrome -

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after being exposed to the powerful

drug, valproic acid, in the womb.

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Some of the children are so severely

harmed they will never develop

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beyond the mental capabilities

of a toddler.

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Others may appear fine

but will struggle with cognitive

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and physical disabilities

throughout their lives.

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We know from our research that

children exposed to sodium valproate

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can be affected physically,

they can be affected mentally

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and they can be

affected psychologically.

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These children have an increased

risk of clefting, cleft pallet

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and these children are more prone

to spina bifida

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or neural tube defect.

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We also know that there's

an increased risk of congenital

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heart disease and occasionally

an increased risk of

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kidney abnormalities.

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Concentrate!

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At her school in Essex,

seven year-old Beau attends special

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PE classes to improve her motor

skills and her ability

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to interact with others.

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Try to keep your arm

straight ? good girl.

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That's enough, perfect.

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I've never worked with a childwith

foetal valproate syndrome before.

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Beau finds a lot of

things challenging.

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She has actually got

a diagnosis of ADHD.

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She also we feel has got problems

with her co-ordination so that's

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being looked into in terms

of possible dyspraxia.

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Can you try with your other

hand and other foot?

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At school, Beau needs special,

different treatment

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to the other kids.

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But at home she is just one of three

sisters all struggling

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with health problems,

caused by foetal valproate syndrome.

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I don't know if it was like denial,

but I just I didn't

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when when you see your children

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every day you don't see them

as being different ? they're

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just your children and for someone

to say there's something

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wrong with your child,

you think, no, they're fine,

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they're they're perfect ?

but obviously there is issues

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and obviously they need

they need extra help.

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You know it's hard.

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Their eldest daughter,

16-year-old Devon needs to be

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constantly watched over.

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She suffers from reflex syncope,

a condition which can restrict

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blood supply to the brain.

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I think I am a bit slower

than other children.

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I am slower in, like,

writing than others.

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I get extra time when I do

exams because it takes me

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like a long time to understand

what the question means.

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Devon's younger sister,

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11-year-old Sienna is the sibling

most affected by the syndrome,

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leaving her with mental and physical

impairments.

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It affects me.

I get really stressed out.

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I either start just

making lots of noises,

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or I just start screaming, screaming

or crying because it is then

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just too much for me.

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She has accidents, it's not every

single night she has an accident

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but there is some kind

of leakage every day.

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She's got this condition

because of the medication

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I was taking whilst

I was pregnant with her.

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She's incontinent

and she soils as well.

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This is something

that will go on with her

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for the rest of her life.

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As a remedy for her epilepsy,

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Leanne has always been

prescribed sodium valproate.

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Yet both she and her husband say

they were never fully warned that

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taking the drug whilst pregnant

could damage their children.

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We wasn't told, no way,

shape or form that this

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would happen to us.

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There was no, there

was no guidelines.

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There was no information,

there was nothing.

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This is a drug that was

prescribed from a doctor

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and this is what happened.

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We are the ones living

with the consequences.

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Since the anti-epilepsy drug

was launched in the 1960s

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under various brand names,

it's estimated that

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tens of thousands of women

around the world have taken it

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during their pregnancies,

unaware of the dangers.

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Karen is one of them.

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I didn't think my child

was going to be

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like how she is today.

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If I had known when Bridgit

was inside me, if I had known now

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what I knew back then,

I wouldn't have had my child.

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Emma and Janet also took sodium

valproate during their pregnancies.

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They say there were not aware

of any warnings and were given no

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indication

of the danger by their doctors.

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He didn't even tell me to an effect

that I had epilepsy to start with.

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When I got my first prescription

there was no warning

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When I got my first prescription

there was no warning

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in the boxes at that point,

I mean we are talking '83, '84,

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in the boxes at that point,

I mean we are talking '83, '84,

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so there was nothing for me at all.

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My husband and I questioned

the midwives, questioned

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My husband and I questioned

the midwives, questioned

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neurologists and to just be told

take this medicine, it's the best

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neurologists and to just be told

take this medicine, it's the best

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to control your seizures ? that's

great to control the seizures

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but the baby.

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After their children

were born with disabilities,

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they set up a charity

to raise awareness.

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We started our national campaign

in 2013 and the main aim

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was to get warnings on to the boxes,

on the patient information leaflets.

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Partly as a result of their campaign

in 2016,

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The Medicines and Health

Care Products Regulatory Agency

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recommended that warning labels

should be featured on all

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valproate-containing medicines.

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GPs must only prescribe the drug

to women of child bearing age

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as a last option, after

explaining all the risks.

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But why has it taken 50 years

to get the warning out?

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In the UK, the Government

regulates what information

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is provided to patients and,

according to Emma and Janet,

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it knew about the dangers

of the drug as far back as 1973.

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They discovered the evidence,

deep in the National Archives.

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There you go...

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That a statement, that a statement

similar to that proposed by ICI

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could be included on all relevant

data sheets but not on packaging

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inserts, so there would be no

danger of the patients

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themselves seeing it.

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If they hadn't of

made this decision.

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you would have been warned.

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I'd have been warned and probably

the boys wouldn't have

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been harmed like they were.

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The 20,000 affected.

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There wouldn't be that today.

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It is an extraordinary scandal.

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Since the very start

of its licensing in this country,

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there was knowledge of risk

and yet a decision to hide that

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risk from young mothers,

a totally sort of paternalistic idea

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that mothers might worry about it.

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Well, of course,

mothers have the right to know.

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In a statement The Medicines

and Health Care products

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Regulatory Agency said

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"At the time, according

to clinical practice

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it was for the doctor to decide how

much information a patient was given

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about their medicine.

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Since then the need for patients

to be fully informed

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has been underpinned

by legislation."

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But charities say

the system of warning patients

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is proving ineffective.

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Over the last year hundreds

of babies around the world have been

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born with sodium valproate syndrome.

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Many pharmacists and health centres

are still issuing the drug

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in generic-packaging

with no warnings.

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We are now here in 2018

and the scenario is,

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that woman are still given

white boxes in which there

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are no warnings ?

there is absolutely nothing on them.

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The fact that women are

still not being made fully aware

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of the risks associated

with the drug is particularly

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alarming because amongst affected

families there is growing fear

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that foetal valproate syndrome

is actually being passed on,

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through the genes,

from one generation to the next.

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Three generations

of the same family.

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Here today are Grandma, two

grown-up daughters and their kids.

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Foetal valproate syndrome has

dominated their lives.

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It's because I took that medication

that's why my kids haven't got

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a normal life and they struggle

every single day of their life

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to fit in and do things.

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One of my kids have tried to...

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Couldn't cope and tried

to hang themselves.

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If I'd known with my first couple

of children that they'd have had

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this syndrome I could have then made

that decision whether to go

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on and have more children.

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Sue took the drug Epilim

throughout her pregnancies.

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She only discovered it had

harmed her children after a doctor

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visited her at home.

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I had

pictures up on the wall of the kids

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when they were little and as soon

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as she walked into the room

and she seen the pictures then

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she said are these the children

and I said yeah and she said yes

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they've definitely got the syndrome.

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It was they had the facial features

the high forehead the upturned nose

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and then an appointment was arranged

for all the children myself to go

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down to Exeter to have genetic

testing done and all other kinds

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of test done and that

and it was confirmed.

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Despite their difficulties,

Sue's daughters now have

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children of their own.

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In the past, Natalie

was prescribed sodium valproate

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to control her epilepsy.

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But she says she stopped taking

the pills when she was pregnant.

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Tanya has never taken the drug yet

both sisters believe their children

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are displaying the symptoms

of foetal valproate syndrome.

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There's certain things

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that they are doing,

like their behavioural ways,

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the way they speaking.

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It's just certain things.

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I'm like, I remember doing things

like that when I was a kid.

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My little boy is nine.

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He's got dyspraxia,

learning difficulties,

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a bowel condition, sensory

issues, memory problems.

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I've got two children,

both have got dyslexia.

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My daughter's got

dyslexia and dyscalculia.

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She's in special needs school.

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Whilst researching this film,

we spoke to several families

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who suspect that sodium

valproate is somehow just not

0:15:040:15:08

harming their children

but their grandchildren too.

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Until now, those suspicions have not

been deemed credible but we've

0:15:130:15:16

obtained the results of a major

scientific project in South Korea

0:15:160:15:20

which actually supports

the idea that the drug can

0:15:200:15:22

harm successive generations.

0:15:230:15:30

Chan Young Shin,

a Professor of Pharmacology -

0:15:300:15:35

is leading the research

that uses pregnant mice,

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injected with the compound.

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What does your research

actually prove?

0:15:380:15:42

What does your research

actually prove?

0:15:420:15:43

They are giving

the indication or one

0:15:430:15:44

They are giving

the indication or one

0:15:440:15:45

of the evidence that this compound

could cause autism spectrum

0:15:450:15:46

of the evidence that this compound

could cause autism spectrum

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disorder, trans-generationally,

through the generations.

0:15:480:15:51

It can give us some kind

of clue the same thing

0:15:520:15:54

is happening to humans.

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So it's kind of warning signal.

0:15:570:16:01

The experiment indicates

that sodium valproate can travel

0:16:010:16:04

through DNA and afflict

successive generations

0:16:040:16:09

with mental health problems.

0:16:090:16:11

In the UK, the findings

are being carefully considered

0:16:110:16:14

by the Government and have already

triggered concern amongst experts

0:16:140:16:16

on foetal valproate syndrome.

0:16:170:16:19

Dr Rebecca Bromley is a leading

neuroscientist and she believes

0:16:190:16:23

the need for more research

in this area is urgent.

0:16:230:16:29

That was the first bit

of evidence that had in any species

0:16:290:16:32

that potentially might be carried

on to the next generation.

0:16:320:16:35

Before this paper came out

we just didn't know.

0:16:350:16:38

We had no evidence that it was

going to be an issue

0:16:380:16:41

and we were still learning

about the longer term effects

0:16:410:16:44

on the individual who had been

exposed directly to the drug.

0:16:440:16:48

This is something now that

needs to be looked at it

0:16:480:16:50

as quickly as possible to give

the families some reassurance.

0:16:500:16:54

The consequences are incalculable.

0:16:540:16:57

How extraordinarily distressing this

must be for the families affected.

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The knowledge that this is now

in within the DNA of that family

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and potentially transferable

from generation to generation.

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At home in Liverpool,

Tanya and Natasha

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want to get their children formally

diagnosed but like many families

0:17:130:17:16

they are struggling to find a doctor

who even knows the syndrome exists.

0:17:160:17:22

I went to the doctors

the other day and I asked my doctor

0:17:220:17:25

a question and I said can

you tell me is there a possibility

0:17:250:17:28

this could be a part of my FACS?

0:17:280:17:31

My GP turned round and said,

"Sorry, what is FACS?"

0:17:310:17:34

I was like, "I have to keep

repeating myself"

0:17:340:17:36

and I should not have to do that.

0:17:360:17:39

I said, "I should not

have to be your teacher"

0:17:390:17:41

and I walked out of the room.

0:17:410:17:43

I thought, that is not my place

to explain to you what FACS is.

0:17:430:17:47

Read my notes.

0:17:470:17:48

Couples that have come to see me

in the South West of England,

0:17:480:17:51

some have really struggled

to get their GP to refer them,

0:17:510:17:54

I know that for a fact.

0:17:540:17:57

Just stand down next

to mum and we will try

0:17:570:17:59

and measure your head.

0:17:590:18:01

It partly depends on really

the first hurdle if you

0:18:010:18:04

like, whether family

0:18:040:18:07

doctor or GP has some

knowledge or awareness

0:18:070:18:09

of the condition at all.

0:18:090:18:11

Back in London, Bridgit

is becoming weaker -

0:18:110:18:13

the drugs are no longer working.

0:18:130:18:17

Her brain is brain damaged

so she has only one

0:18:170:18:20

part of her brain that works

and the doctor have turned

0:18:200:18:22

round and said now, a neurologist

doctor has turned around and said

0:18:220:18:25

they can't give her any

more medication no more.

0:18:250:18:29

She has different kinds

of seizures ?

0:18:290:18:33

and now she could die any day.

0:18:330:18:36

I love you!

0:18:360:18:43

Karen says

Bridgit isn't expected to survive

0:18:430:18:48

beyond a few more months and insists

that when that fatal moment comes,

0:18:480:18:50

she must be allowed to die in peace.

0:18:500:18:54

If she was to stop breathing,

0:18:540:18:57

she is not to be resuscitated;

she is to be rest in peace.

0:18:570:19:03

No-one will bring her back

alive ?

0:19:030:19:07

that's what these

letters say on this door.

0:19:070:19:12

It will be more of a relief for me

as a mother to let my little girl

0:19:120:19:18

rest in peace knowing that every day

I see my little girl having

0:19:180:19:24

a seizure in so much pain as I do.

0:19:240:19:30

That's more painful to watch

than seeing my little girl probably

0:19:300:19:35

go from me and be at peace.

0:19:350:19:44

Today, Tanya and Natasha

are heading to Liverpool's

0:19:440:19:46

Walton health centre -

0:19:460:19:49

they want to get their

children assessed

0:19:490:19:52

for foetal valproate syndrome.

0:19:520:19:54

I am a little bit anxious to know

0:19:540:19:56

what is going to happen,

what he's going to say.

0:19:560:19:58

I just think we need to know

whether these have got the syndrome,

0:19:580:20:02

because if these have got it

and we haven't took the medication,

0:20:020:20:05

if these have got it,

is it going to get passed

0:20:050:20:07

on to their children?

0:20:070:20:10

Is it going to stay

in the family for

0:20:100:20:12

as long as the family carries on?

0:20:120:20:14

I'd like to try this next one

for me, please.

0:20:140:20:17

Neuropsychologist,

Professor Gus Baker is the lead

0:20:170:20:18

author of the most comprehensive

research programme ever

0:20:180:20:21

conducted into children born

to mothers with epilepsy.

0:20:210:20:25

We've

actually looked at the children

0:20:250:20:28

from birth and followed them up

0:20:280:20:30

over a six-year period,

assessing their development,

0:20:300:20:34

their neuro development,

in terms of how well their brains

0:20:340:20:37

are working, their development

of their language, their memory

0:20:370:20:40

and their intellect.

0:20:400:20:42

So talk us through the assessment,

0:20:420:20:44

what are you going

to do today, exactly?

0:20:440:20:48

What I want to be

looking at is how this young boy

0:20:480:20:51

is developing.

0:20:510:20:54

The first one is really

straightforward.

0:20:540:20:57

Can you write your name for me?

0:20:570:21:01

I'll be

trying to get an overall picture

0:21:010:21:03

of how he is developing

0:21:030:21:08

in relation to, for example,

how his peers are developing.

0:21:080:21:12

Can you draw me a house?

0:21:120:21:16

How many bedrooms

has it got upstairs?

0:21:160:21:19

Two bedrooms.

0:21:190:21:22

And I drew

some flowers, some leaves,

0:21:220:21:24

a gate and a path.

0:21:240:21:27

So, I know you cannot give us

a definitive diagnosis,

0:21:270:21:29

but what are your thoughts

after that assessment?

0:21:290:21:32

Well, obviously,

it is going to take me a little

0:21:320:21:36

while to score up the test

results but when I have done that,

0:21:360:21:39

I'll be looking at his strengths

and weaknesses and I'll be

0:21:390:21:42

identifying them and trying to map

them on to what we understand

0:21:420:21:45

about sodium valproate and how it

affects children and then I'll

0:21:450:21:51

probably be in a good position

to provide a formulation

0:21:510:21:56

of what I think has happened to him

and what we might be able to do

0:21:560:22:00

to ameliorate those difficulties

that he is clearly having .

0:22:000:22:06

Even though it

could be years before the full

0:22:060:22:08

extent to which her grandchildren

0:22:080:22:09

extent to which her grandchildren

0:22:090:22:10

are affected is known, Sue believes,

the drug she first took nearly four

0:22:100:22:14

decades ago has caused infinite

damage to her families lineage.

0:22:140:22:19

I do think my grandchildren

have been affected by it.

0:22:190:22:22

I have had my worries

my kids growing up.

0:22:220:22:25

I've got the worry

again with my grandkids.

0:22:250:22:28

How long is it going to go on for?

0:22:280:22:29

It's not fair, not fair at all.

0:22:290:22:31

It's so wrong.

0:22:310:22:33

So many people's lives have been

affected and ruined.

0:22:330:22:38

The trans-generational impact

of foetal valproate syndrome

0:22:380:22:43

could potentially remain

with families for centuries

0:22:430:22:46

and as the first generation

of children to be born

0:22:460:22:49

with the condition mature

into adults, there is growing demand

0:22:490:22:51

that the Government should pay

for their care and support.

0:22:510:22:57

In France a charity-led campaign

for compensation is being

0:22:570:23:00

supported by the Government.

0:23:000:23:05

The Government decided

to create a special fund

0:23:050:23:08

to help victims.

0:23:080:23:11

There is a fund that is organising

all the expertise, to appoint

0:23:110:23:14

the doctors and pay the doctors

and who are going to say

0:23:140:23:20

who will have to pay.

0:23:200:23:22

Until now

a campaign in the UK

0:23:220:23:25

for compensation to help affected

children has failed to receive

0:23:250:23:27

any Government backing.

0:23:280:23:30

But recently the

Department of Health has initiated

0:23:300:23:33

a conversation with charities

and key MPs who have been fighting

0:23:330:23:36

for a public inquiry.

0:23:360:23:38

We are in a good dialogue,

0:23:380:23:42

The Minister, Lord O'Shaughnessy

appears to have taken this

0:23:420:23:44

very seriously,

is willing to engage with us.

0:23:440:23:49

He appears to be completely

conscious of the need to stop this

0:23:490:23:52

scandal continuing

and the need to recognise

0:23:520:23:55

what is happening in France.

0:23:550:23:59

Something similar has to happen

here and without delay.

0:23:590:24:04

Unbelievable that the English

democracy does not work properly

0:24:040:24:07

and does not help the people.

0:24:080:24:11

The people must put pressure

on their Government for that.

0:24:110:24:19

and in

0:24:190:24:19

It's a rallying call that charities

in the UK are championing.

0:24:190:24:22

Emma and Janet are

at the forefront of the campaign.

0:24:220:24:25

The care package is more

important because of

0:24:250:24:27

the trans-generational link now.

0:24:270:24:29

The fact that our grandchildren

could be affected, you know

0:24:290:24:33

with neuro-development disorders,

possible heart malformations,

0:24:330:24:36

they need care and support.

0:24:360:24:39

For us it is a Government issue,

The Government has to take

0:24:390:24:42

responsibility on that matter

and make sure these children

0:24:420:24:45

are fully looked after.

0:24:450:24:48

As a parent in particular

my two are a lot older now

0:24:480:24:51

they are in their 20s and it's

a worrying factor for me,

0:24:510:24:54

I'm not always going to be

here to take care of the kids

0:24:540:24:57

and to live an independent life

is going to be really,

0:24:570:25:00

really difficult for them.

0:25:000:25:04

Janet's two grown-up sons,

both of whom suffer

0:25:040:25:07

with the syndrome, are completely

dependent and still live at home.

0:25:070:25:11

Philip is more seriously affected.

0:25:110:25:16

I am 25 now and symptoms are

I can't concentrate for long,

0:25:160:25:22

When I go outside my social

interaction is zero

0:25:220:25:32

and I am very apprehensive

with going anywhere, really.

0:25:320:25:40

Both of Janet's sons have suffered

with neurological problems

0:25:400:25:44

since birth and two years ago

doctors discovered that Philip,

0:25:440:25:48

like many maturing sufferers

of foetal valproate syndrome,

0:25:480:25:54

had developed yet another condition.

0:25:540:25:57

After I have finished

my college course that

0:25:570:26:00

I had been on for eight years;

I was diagnosed with epilepsy,

0:26:000:26:03

stress-related epilepsy.

0:26:030:26:06

It is really hard for me,

it's really hard for me...

0:26:060:26:13

It's hard

for me to describe the symptoms

0:26:130:26:22

but I know it's really

difficult to live with.

0:26:220:26:28

I think it is disgusting

the way the Government are acting.

0:26:280:26:31

I think they should pay compensation

to all these babies that have

0:26:310:26:37

grown up now into young adults

that are struggling.

0:26:370:26:43

Any kind of apology and compensation

might come too late

0:26:430:26:46

to help children like Bridgit.

0:26:460:26:53

It breaks my heart.

0:26:530:26:54

I picked this plot because it

is a lovely cemetery.

0:26:540:27:04

I didn't want to choose a cemetery

yet but because of how my daughter

0:27:060:27:13

is deteriorating so rapidly,

I needed to do it because I won't

0:27:130:27:17

be able to do it once

she does pass away.

0:27:170:27:19

Mother's shouldn't have

to bury their daughter no

0:27:190:27:23

mother should do that.

0:27:240:27:27

My family are mourning

now and will be the day

0:27:270:27:33

I lose my little girl.

0:27:330:27:43

If you are concerned

about any of the information

0:27:440:27:47

you have seen in this film,

please contact your GP urgently.

0:27:470:27:50

Do not stop taking any medication

prescribed by your doctor

0:27:500:27:52

without speaking to them first.

0:27:520:27:55

And that's about all

for tonight's Inside Out.

0:27:550:27:58

Before we go though,

let's have a quick look at what's

0:27:580:28:00

coming up on next week's show.

0:28:000:28:05

London is getting noisier.

Good

living in the capital put you're

0:28:050:28:09

hearing at risk. This

0:28:090:28:12

living in the capital put you're

hearing at risk. This is the big

0:28:120:28:13

storyline at the stock well. It's

absolutely deafening.

0:28:130:28:17

Could living in the capital be

putting your hearing at risk?

0:28:170:28:19

Is London too noisy?

0:28:190:28:24

The fight to get fit -

we set one family the challenge

0:28:240:28:27

of being more active.

0:28:270:28:28

And ? how Brixton became home

to London's last working windmill.

0:28:280:28:32

It's really special to be in a

building that is much as it was a

0:28:320:28:38

hundred years ago. It's amazing to

see what we achieved over 200 years

0:28:380:28:43

ago.

0:28:430:28:45

Tonight's programme will be

available on the iPlayer -

0:28:450:28:48

just head to our website -

bbc.co.uk/InsideOut ?

0:28:480:28:53

just click on London.

0:28:530:28:55

Thanks very much for watching

? I'll see you again next week.

0:28:550:29:01

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