22/01/2018 Inside Out North West

Hello, and welcome to Inside Out.

I am Dianne Ochs Perry. Tonight, the

shocking truth behind the

anti-epileptic drug used by pregnant

women in our region who were not

warned about the damage it could do

to their babies.

Because I wasn't

told about this medication, this is

where my children do not have a

normal life.

The failure to provide special

toilets for disabled people in the

North West, as Zack Kerr and his

family take their campaign to

Downing street.

To be degraded because you have got

a disability and you cannot access

facilities everybody else has, it is

not something -- anything fancy you

are asking for, is just basic.

And as part of the BBC's Supermovers

campaign, Mike Sweeney revisits the

world-famous Lads Club.

We didn't

really call it exercise then, it was

really playing out with your mates.

The drug sodium valproate is widely

used as an effective for epilepsy,

but for pregnant women it can cause

serious side effects. It passed,

many mothers took it completely

unaware of the serious mental and

physical damage it was doing to

their unborn children. In this

investigation, Emma Baum reveals how

the authorities were completely

aware of the danger this drug

presented, but deliberately chose

not to inform pregnant patients. --

Emma Baum.

Janet and her son spend a lot of

time walking next to the estuary at

home in Preston. The sound of the

birds calms down Philip's anxiety

disorder.

I was diagnosed with

epilepsy, and it is hard for me, it

is hard to... Yes, it is hard for me

to describe the symptoms, but it is

really, really difficult.

When Janet was pregnant with Philip,

she was described sodium valproate.

She has epilepsy, and the pills were

meant to control the seizures. But

the powerful chemicals which

protected her health damaged her

son's. Both of Janet's sons have

struggled with neurological problems

and disabilities since birth. They

are completely dependent on ma'am.

I

am 25 now, and the symptoms are, I

cannot concentrate... When I go

outside, my social interaction is

zero. And I am very apprehensive

with going anywhere, really.

Like Philip, around 20,000 children

in the UK and thousands more around

the world are believed to have fatal

valproate syndrome.

We know from our research that

people -- children who are exposed

to sodium valproate, they can be

affected physically, they can be

affected mentally, and

psychologically.

Since sodium valproate was launched

under various brand names in the

1960s, it is estimated that tens of

thousands of pregnant women around

the world have taken it. Many, like

Janet and her friend Emma, said they

were not made aware of the risks.

Nothing by my doctor. He didn't even

tell me really to an effect that I

had epilepsy to start with. When I

got my first prescription, there

were no warnings in the boxes at

that point. We are talking 1983, 19

84. So there was nothing for me at

all.

My husband and I questioned the

midwives, neurologists, and to just

be told, take this medicine, it is

the best to control your seizures.

That is great to control the

seizures.

But the baby... After

their children were born with

disabilities, Janet and Emma set up

a charity in 2013 that aims to

ensure warnings are prominently

displayed on the packaging of all

sodium valproate drugs. Partly as a

result of their campaign in 2016,

the medicines and health care

products regulatory agency

recommended that warning labels be

featured on all valproate containing

medicines. GPs must only prescribed

the drug to women of child-bearing

age as a last option, after

explaining all the risks. But why

has it taken 50 years to get the

warning out? In the UK, the

Government regulates what

information is provided to patients.

And according to Emma and Janet, the

Government knew about the dangers of

the drug as far back as 1973. They

discovered the evidence deep in the

National Archives.

A statement

similar to that proposed by ICI

could be included on all relevant

data sheets but not on packaging

inserts... So there would be -- so

there would be no danger of the

patients seeing it.

You would have

been warned. 20,000 affected. There

would not be that today.

Since the very start of its

licensing in this country, there was

a knowledge of risk. And yet, the

decision taken to hide that risk

from mothers, a totally sort of

paternalistic approach that mothers

might worry about it, well, of

course mothers have a right to know.

In a statement, the medicines and

health care products regulatory

agency said...

Over the last year, almost 200

babies in the UK have been born with

sodium valproate syndrome. Despite

efforts to raise awareness, many

pharmacists are still issuing the

drug in generic packaging with no

warnings. The fact that women are

still not being made fully aware of

the risk is particularly alarming.

Because among the affected families,

there is growing fear that fatal

valproate syndrome is actually being

passed on through the genes, from

one generation to the next. -- fetal

valproate syndrome.

Three generations of the same

family, here in Kirby. Fetal

valproate syndrome has dominated the

lights.

It is because I took that

medication, that is because -- that

is why my kids do not have a normal

life, and this struggle every day of

their lives to fit in and do things.

One of my kids couldn't cope, and

try to hang themselves.

Sue took the drug -- a drug

throughout their pregnancies, and

later found out it had left all of

her children with mental

disabilities. Now her daughters are

worried that their children have

inherited the syndrome too.

She is

in special needs school. My little

boy's nine, he has got dyspraxia,

learning difficulties, a bowel

condition, sensory issues, money --

memory problems.

Until now, those suspicions have not

been deemed credible. But we have

obtained the results of a major

scientific project in South Korea

which actually supports the idea

that the drug can harm successive

generations. The experiment, carried

out on mice, indicates that sodium

valproate afflicts several

generations with mental health

problems. Findings are being

carefully considered by the

Government and have already

triggered concern among experts on

fetal valproate syndrome.

That was

the first evidence we had in any

species. Before this paper came out,

we had no evidence that it was going

to be something that was an issue,

and we were still learning about the

longer term effects on the

individual who had been exposed

directly to the drug. This is

something now that it's to be looked

at as quickly as possible to give

families reassurance.

How

extraordinarily distressing this

must be for the families affected,

the knowledge that this is now

within the DNA of that family,

potentially transferable from

generation to generation.

The transgenerational legacy of

fetal valproate syndrome could

potentially remain with families for

centuries, leading for calls for the

Government to fund a care package to

help those affected.

The care package is more important

because of the transgenerational

link now, the fact that our

grandchildren could be affected,

with neurodevelopment disorders,

possible heart malformations. They

need care and support.

My grandkids have been affected by

it. I have had my worry with my kids

growing up, I have got my worry

again with my grandkids. It is

nothing -- it is so wrong. So many

people's lives have been affected

and ruined.

If you are currently taking sodium

valproate, please do consult with

your doctor before making any

changes to your prescription.

Around a quarter of a million people

in the UK need a special kind of

accessible toilet. But there are not

any end UK service stations. A

22-year-old campaigner has taken

this petition to Downing Street to

dry to get accessible toilets

installed in all service stations.

Zack likes nothing better than going

out to nature reserves. But he is no

ordinary 22-year-old. He has a form

of cerebral palsy which affects his

speech and limbs, he uses a computer

to communicate, and relies on his

electric wheelchair. He is a

passionate Manchester United

supporter. He loves shopping. He is

in constant and cannot use a normal

toilet as he requires a clear to

help. To use the bathroom safely and

comfortably Zack needs special

equipment such as a hoist. Tollitts

with these special facilities are

cold changing places.

Many disabled

people cannot self transferrin from

the wheelchair onto a toilet.

Zack

has been campaigning for more

changing places toilets on service

stations.

If I am unable to be

changed I can get sore and this can

lead to other health problems.

This

can mean that Zack and other people

at this ability is our forced to

change on a toilet floor.

It is not

right. It is heartbreaking. On the

drive home, everyone is quiet, and

he is sorry. Nobody wants to talk

about it. It is humiliating for him.

Sometimes when we are out we cannot

go for long because of Zack leads

the toilet and we have to go back.

It can be frustrating. That is a

private issue. He has been

incredibly brave to raise that. This

is something many people would not

want to talk about it.

Absolutely.

Zack to go when he was younger. I

wrote in my diary, what will happen?

-- Zack was Bill when he was younger

-- was Zack when he was younger.

Zack is working to take his campaign

to Downing Street. It is a long

journey. He will film the services.

The findings are shocking. There is

not enough space to change on the

toilet floor in the disabled toilet

or the baby changing room. 26 miles

south at another service station

there still is not enough space to

change Zack. The family also find

litter on the floor and the

emergency cord has been hung out of

reach.

By the time we arrived at the

third service station it was

becoming too much to cope with. It

was distressing. It is not fair.

We

are at Stafford services. Zack is

quite upset now and fed up. We have

not found any fear suitable to get

him changed. He is upset about the

thought of going on the floor yet

again.

There were three large bins

in one of the toilets and these had

to be taken out of the room before

the matter could be rolled out. I

did not want to get out of the

wheelchair and lie on the floor

because that was so dirty.

We

thought of turning back at one

point. We knew we had another couple

of hours.

At this service station Zack is

finally getting changed nearly seven

hours after they set off.

But was a

better experience. How do you feel

about that?

53 miles later at

Warwick services, despite being

listed online is having a changing

place toilet the facility was

nowhere to be found. The last stop.

They have a changing faces facility

that Zack is able to use.

The family finally reach London

after a long journey from

Accrington. Only two service

stations had the appropriate

changing facility that Zack needed.

The law is confusing. It is not

compulsory to install these toilets

but the 2010 equality act says

businesses have a duty to make

reasonable adjustments so that those

with the civilities can access

toilets but the definition of what

is reasonable has been messed up to

campaigners like Zack to dry and

enforce change. -- what is

reasonable has been left up to

campaigners. The blue spot show the

areas where there are fewer than

ten. Even here, the hoist was not

working.

This has to be about human

dignity. Some of the stories I have

heard from Zack today have been

truly shocking.

The Government is

looking into whether current

regulations meet the needs of

disabled people with a report to

come out later this year.

We want to

make sure so that they recognise why

this is important, they should treat

all their customers equally.

Today is the big day for Zack, his

family, and their supporters.

That

is surreal being here, handing in

the petition.

I am hopeful that my

petition will be taken seriously.

The provision and the north of the

country where we live is not good.

For thousands of people in the UK

the situation at motorway service

stations is degrading. Something

needs to be done. Congratulations to

Zack for leading the national

campaign.

We put Zack's findings to

the three largest motorway service

providers. Any statements they said.

We currently have six facilities and

we expect to have facilities at

three other sites. Today it costs

between £50,000 and £200,000 each to

install. Welcome break has seven

facilities and they hope to have a

facility within the next six months.

The website listing for Warwick

South services as a historical error

and has been removed and they

apologise for the experience of the

family. Good chef is currently

trialling their first changing place

toilet, this facility cost £38,000

to install. They say that usage to

date has been low and they are

looking for a more cost-effective

way to meet this need. They

apologise to the family for the

experience at Stafford and they will

ensure that more regular checks of

facilities are made.

Zack's family have found their own

way of coping when there are no

facilities.

We carry a mat. It is

not dignified.

Despite all this Zack

is determined to continue

campaigning.

The total number is

just over 117,000. My next focus

will be on hospitals because very

few have changing place facilities.

But first Zack is looking forward to

getting a place of his own.

He is

looking forward to that. He wants to

be out and about. But this is

restricting people from having a

complete life.

Nobody chooses to

have a disability. It can happen to

anyone of us at any time of our

life. To be degraded because you

have got a disability and you cannot

access facilities that everybody

else needs is just basic. It is not

anything fancy, it is just basic

facilities.

Most of us know that if we don't

move around enough chances are we

will put on weight and the bad news

is our seventh league lifestyles are

affecting the way we think and feel.

Very cute of us manage the one hour

per day of physical activity that

the Government recommends. Getting

active does not have too cost the

earth and it can change your life.

Mike Sweeney still plays football

twice a week at the age of 70. We

asked him to let us then on his

secrets for a healthy lifestyle.

Long before it was made famous by

the Smiths, Salford Lads Club was a

home for home for Albert Finney,

Graham Nash, and myself, DJ Mike

Sweeney.

This is where my love of exercise

started, here at Salford Lads Club.

We did not call it exercise. It was

just playing with your friends. The

club has been here since Edwardian

times and is still used by 150 young

people every week. It is not an

exaggeration to say that this place

changed my life.

Here I am, summer 1963, nearly 16

years of age, my Beatles haircut

just starting. I have such great

memories of this club trip. Out in

the Treasury, swimming, playing

football, messing about with my

friends. And the club still runs its

annual camp to this day. You have

seen the oxygen gymnasium. I spent

most of my time on this football

pitch. Basketball. Snigger. Table

tennis. All for £1 per session.

-- football. Snooker.

It is an ethos that is alive and

well. With luck they will let me

join in. The first thing you notice

is all these flags, over 20 of them,

they illustrate the nationalities of

the kids that use this race. What a

welcoming sight. The slogan of the

club is, somewhere to go, someone to

talk to, they are open every day

except bank holidays. That costs 50p

per session. They can come in at

four o'clock at night and stay until

ten o'clock at night if they are a

senior member, half past eight they

are a junior member. They can do as

much as little as what they want to

do.

We have seen the benefits.

What is

your observation? I agree. For young

people, taking part in sport authors

are collectively is important to

develop self-confidence, self

esteem, self worth, if they get into

that habit at an early age they are

set up for life in taking part in a

healthy lifestyle, taking part in

sport.

It is abroad and are young members

are safe at all times, we provide

pick-up services, click young

people, bring them back afterwards

the parents and carers are happy

that their children are being looked

after safely.

The club also provides

a hot nutritious meal for just £1.

It is a fantastic place, somewhere

really special for children to come.

You can come here after school. You

can release wards of energy here and

run around. In school you cannot do

as much exercising. You only get one

hour.

What benefits do you think you

get? My concentration has got better

in school. When I first went to

school I used to the gym a lot and

could not concentrate on doing stuff

and would always disturb the class

but know I can hear and I get to

release some energy so when I get

home I get a good night sleep and I

can concentrate on school better.

We

are doing different activities,

things that any child can do.

There

are so many different activities,

some I have never heard of.

What is going on here? We are taking

what we did in there with the

activities and dry to put it into

hand and eye coordination.

You have

been exercising for one hour.

That

is all about trying new things. They

can have fun. They can play. You

might not be the best. You might not

enjoy the competition site. You

might just want to come with your

friends and develop your social

skills. We have a lot of people who

suffer from social anxiety or are

under pressure at home and they come

here and are able to mix with a wide

group of people from all over the

world and just have fun. It gives

you increase knowledge about the

meet different people act stop a lot

of The Times, within school sport or

club sport, if you are not good

enough, you do not play. Here they

can take part in anything. They can

just play and have fun and that is

all that matters.

I have come in my

kit because I am itching to get

involved. If you can set something

up that would be brilliant.

We are

going to set up some admin ten.

Smashing. Badminton. I have not done

this for years. Brilliant. Go on.

Really enjoyed that. I really did

enjoy it. Wouldn't it be great if in

60 years these kids are still doing

stuff at 70 years of age? Like meet

the Genesis was Salford Lads Club

all those years ago and it could be

that this lovely place will be for

these kids what starts them off on a

lifetime of keeping fit.

And you can find lots of fun, free

and easy to use activities to get

your family moving. That is all for

this week. We are back next Monday.

Goodbye.

Next week, the amazing World War II

diary that is finally being

published after it had to be hidden

in a grave.

He took the diary

because it was getting too dangerous

and buried it in one of the graves.