Episode 10 The Big Questions

Today on The Big Questions:

Should the people have the final

say on the Brexit deal?

And, who should decide

whether a child's life-sustaining

treatment should be stopped?

Good morning, I'm Nicky Campbell,

welcome to The Big Questions.

Today we're live from

the Attenborough Centre

at the University of Sussex.

Welcome, everybody,

to The Big Questions.

Here we go...

The debate over who should

have the final say over the Brexit

deal continues to rumble on.

This week the campaign group Best

for Britain launched a legal

challenge to make the government

concede a second vote on Brexit.

This comes on top of the private

member's bill tabled by the Labour

MP Geraint Davies calling

for a second referendum on whatever

the Brexit deal turns out to be,

plus a call from Caroline Lucas,

co-leader of the Greens,

for a people's poll on the final

deal because of its possible effect

on Northern Ireland.

Last year, Gina Miller's private

action against the Government

secured the right of Parliament

to a final vote on the Brexit deal.

But given the ever-changing

demographics of the UK,

where those who were most likely

to have voted for Brexit are being

steadily replaced by young people,

who overwhelmingly favoured staying

in the EU,

we ask,

"Should the people have the final

say on the terms of Brexit?"

From Best for Britain, Chief

Executive, Eloise Todd, let's be

honest, that's arguable... (!)...

What is it about leave that you do

not understand, because the people

have voted.

The people voted in 2016

for an idea of what Brexit might be

by 2018 is looking really different,

it is only now that we are starting

to see what the invasion might be

for the country as a whole and for

families. We were told we would have

great opportunities of trading with

the US, looks more like steel

tariffs, trade wars, chlorinated

chicken. We were told we would have

a boost for the NHS, actually,

doctors and nurses are leaving, and

we do not have the financial input

we were expecting. We were also told

we would be able to take back

control but the deal being

negotiated by the government looks

an awful lot like staying in except

without the power to make those

decisions! We think because those

things are looking so different, the

people of this country needs to

finish this off and they need to

have a say on the new deal.

APPLAUSE

The vote was on whether we stay or

go, it was not on the precise deal.

Exactly, that is exactly why we need

to have a vote now, it is only now

that the terms are becoming clear,

how could people have voted with all

the information they needed at hand.

It remains to be seen... It is

interesting in the newspapers that

there is so much about the way in

which Cambridge analytical work with

the Trump election and there will be

some analysis in terms of weather

that had implications for the Brexit

vote but regardless of that, we need

to look at what is on the table

right now, the government is only

now just getting a position

together. -- Cambridge Analytica.

People have a right to know what the

invitations are and let's face it,

how money people in this country

would trade peace in Northern

Ireland for a Brexit vote, that is

not something that was on the table!

That is an important part of this,

and we will be addressing that

shortly. Chloe, former head of

social media at about leave, Chloe

Westley, it is now emerging exactly

what this may mean, we did not know

that before, the precise details of

the deal are going to have an effect

on generations to come. -- at Vote

Leave. Surely we need to have the

chance to say whether we want this

particular deal or not.

These calls

for a second referendum, it is a

plot to stop Brexit backs by the big

banks, Tony Blair, the political

elite, and...

The political elite?

Tony Blair, John Major, the Brussels

elite, Alistair Campbell, a lot of

the big businesses, what possible

motivation with the EU how to

negotiate a good deal with us if

they knew that they could give us a

terrible deal and then we would vote

to stay in the EU anyway, all this

talk about democracy, it is

nonsense, you just want to stop

Brexit, just be open about that.

I

like a silence! LAUGHTER

There is no answer, there is no

answer.

I think you will find there

probably is from some other people

who believe they have an answer, but

a lot of people would agree with

what you have said, why not put it

to a popular vote, because there is

nothing undemocratic about that.

I

thought that we did.

We did, in June

2016, and the general election.

In

2016, two years ago, we were told

this was the final say, politicians

could not make up their mind, they

had to the public to decide. They

were told... Many different things,

we were told that this would create

absolute economic havoc and people

still voted to leave, what was

promised... What was promised... We

were promised there would be a

punishment budget straight after the

referendum, unemployment would

increase by 800,000. It has gone

down. Interest rates would go up.

There would be an economic

catastrophe, it has not happened.

The doom mongers have egg on their

face, MEN Arena, you cannot keep

going with referendums until Mr

Mandelson is happy. -- Femi. .

Have

we got everything we wanted from the

negotiations in Brussels, how well

do you think they are going, does it

look like they are going well, Army

times have we ask for things and the

EU has said, no, sorry, that is part

of the single market, you wanted

out, you don't get that. If you ask

anybody on the street, nobody thinks

these negotiations are going well,

so did people in 2016 vote for a bad

deal? Did they vote for that? People

keep arguing, you cannot say what

people did not know what they voted

for, who in 2016 could have

predicted the outcome of two years

of negotiations in a process that no

one has ever done before! The people

vote for whatever future these

negotiations come out for?

They did

vote for specific things, it was

made quite clear that voting to

leave the European Union would be

coming out of the single market and

the customs union, that was in the

government funded booklet.

Sorry,

sorry am a listen...

Was it made

clear? It was made clear by Michael

Gove, Boris Johnson, David

Cameron...

George Osborne...

Allow

me to quote Daniel Hannan,

absolutely nobody is talking about

sacrificing our place in the single

market, that is what he said!

Let me

quote the electorate, who have been

blindsided by this, the number of

people who want a second referendum

or second vote, at the end of last

year, YouGov at it at 18%, talk

about the question of single market

membership, customs market

membership, one region in the UK

according to Ipsos Mori backs

staying in the customs union, that

is London, for obvious reasons. You

have to come clean about this, since

referendum, 20 odd months of this

very vocal, very elitist section of

the Remain campaign screaming about

"Brexit", the temerity of the people

devote leave, backing calls for MPs

to intervene, launching legal

challenges, the fact the very same

people are now saying you believe in

democracy so much that you want us

to have a second say... We don't buy

it, and...

Why don't you believe in

democracy, why don't you trust

democracy, Tom

democracy, why don't you trust

democracy, Tom, if you think the

deal is going to be so good and the

British people will understand how

good the deal is, and we are heading

towards the sunny uplands, why don't

you put it to them, because you must

trust the British people on this

one, or, do you not trust them?

I

voted leave because I am a Democrat

and the European Union limits

democracy. It is quite clear that

elites have always tried to use

avail of democracy to bury

anti-democratic means. Couple of

examples, whenever...

The Vale of

democracy for anti-democratic means.

We can all accept that in the same

way that you don't think you should

try the same person over and over

again in the hopes that you

prosecute them is more justice,

putting the same question over and

over again until you get the right

answer that is not democracy.

We

have a representative of the

political elites... (!)... LAUGHTER

The idea that

the idea that Nigel Farage is not

the political elite, that is

hilarious.

Caroline Lucas.

I think,

what happened in the referendum is

people voted for departure, they

were unable to vote on destination

because it was not made clear, it is

as if people were promised a

wonderful mansion and yet what they

have ended up with is a bit of a

shack with dodgy wiring and the

bombing doesn't work and it is fair

enough in that scenario. --

plumbing. Do you want to have a look

at the final deal, see what this

place will look like? If people like

it, fine, have it, if they don't,

people should have the right to stay

inside the European Union and not

move house. The consequences of

leaving are becoming clearer by the

moment, and I and so negative

because you have investment down,

inflation up, the NHS bleeding from

people leaving it, the number of

nurses coming into it down by over

90%...

APPLAUSE

That is some very big negatives.

That is before we get to Northern

Ireland. I really worry about

that...

Let's focus on that in a

moment, because it deserves a

section of the debate on its own, if

you don't mind, there is another

couple of issues. Who was it he

said, don't be so negative. Do you

think that Remainers are being far

too negative? Should we hold hands

and marched together?

Absolutely, we

should be unified, the country made

a decision, now we need... Now we

need to enact the decision.

37% of

the country made a decision.

Rather

than trying to fight the referendum

again...

INAUDIBLE

You are trying to stop Brexit, glad

to see you were honest, it is good

to see is honesty.

Can I ask you for

some honesty. I will be with you in

a moment, Femi, because you wanted

to talk about demographics and the

ageing population, the young

people's region has been stolen...

In the phrase you people use... But

if the phrase had been to stay in

the European Union, would you have

stopped campaigning to leave?

I

would always have campaigned as I

have done for nearly two decades.

Would you have campaigned for a

second referendum?

We would not be

given the time of day, we had this

despite Brexit, when things going

well, it would

would you have campaigned for a

second referendum?

We would not have

been able to have the airtime, this

debate... I would of course have

continued in what I'm doing because

I passionately believe the British

people...

If you had the chance of a

second referendum, you would have

really stepped up to the plate.

We

would not be given one, once someone

votes against the European Union,

they are made to vote again, to vote

the right way, and then not given a

say. That is how democracy works in

the European Union. You have to

support the European Union. What we

need to do, we have had a vote, we

need to move forward together and

find any future that the country

going towards.

A future for our

children, our grandchildren, the

future for you, Femi, what is shot

ageist point about old people voting

for this. -- what is your ageist

point.

Isn't it undemocratic that we

currently have a Tory government, we

voted for Labour in the 2000s, why

are we allowed to change our minds?

Isn't the basis of democracy that we

can change our minds, we know that

in the 18 to 24-year-old age group,

70%, remain. Under 55, possibly

under 65, voted remain. By anyone's

mats, in five years' time, we have a

population the majority of whom

voted to remain yet they will be

stuck with Brexit. We'll "Brexit" be

complete then? -- mathematics. Can

you negotiate trade deals with

hundreds of countries in five years?

Can you make all your own laws?

Religious Labour country, given that

one law going through Parliament

takes a year.

APPLAUSE

Brexit will not be complete, any

when you complete...

By the time we

have a population that voted against

it, and yet that is their future and

our future.

Five years, ten years

down the time... There will be a

population down the road that is

saddled with something they do not

want.

Yes. It has been put at 2020,

financial Times, 2021, within two

years, one year of the Brexit

leaving the EU, we have a population

that voted against it.

It may turn

out to be really good that the

country.

This is the most ugly

argument I have heard, you are

suggesting young people should have

two votes, rather than everybody

else, this is the front to -- you

can play demographic games just for

the sake of Brexit not happening.

This is an affront to democracy.

Once in a generation opportunity to

settle this question, we were told.

And secondly, the point that you

really have directed nice, if we

have a second referendum, why would

people take it seriously? The elite

has already said, we know that you

have had your say, try again. I

would not blame anyone who would not

intervene. I know that that is

essentially what you are counting

on.

Does he represent the elite?

I

am saying, elitist.

This notion

that... That a vote on the terms of

Brexit would thwart the word of the

people, that it would be a big

establishment coup... The will of

the people cannot be faulted by a

vote of the people! -- cannot be

thwarted!

APPLAUSE

an you are saying that people can

been manipulated into voting another

way, why would a vote on the terms

of Brexit be any different?

A second

referendum...

It is almost a given

that we will know the outcome of the

negotiations.

We did not know that

then. Nothing democratic about

holding a second referendum.

If there were a second referendum,

what would the result to be?

Who

knows at that point? I would fight

that referendum tooth and nail.

That

would indicate the will of the

people. Would you be confident that

the Brexit side would win that?

About this is the problem. At the

same time a lot of the polls suggest

people are not changing their minds

about Brexit...

This is what

happened when they voted against the

Lisbon Treaty in Ireland, they voted

against the Lisbon Treaty and they

browbeat them. They are effectively

told the people that their voice

does not matter.

This is very

different.

In a second I want to see

what the audience thing. I am sorry

I did not have the chance to speak

to you earlier.

Go on?

My opinion is that if there

were to be a second referendum, I

very much hope that the result would

go the same way. Then maybe MPs,

celebrities, members of the public

that can't, won't, don't want to

access the result of the first

referendum will then have to. And

then let's move on and get on with

it.

Do you think there is an

argument for put up or shut up? Go

for it, let's have the votes, it

will go our way yet again and then

you can just get on with it and go

with it? You will never have another

chance, Mr Mandelson?

I would not

advocate having another referendum.

As this gentleman said, we have had

it, it was once-in-a-lifetime,

that's it. Let's get over it. If

people do not like the results, use

what power you have. If you are an

MP, for example, make sure we get

the best possible deal that we can

when we leave. Channel your energies

into that, not just fighting each

other and not letting it drop.

Which

is what Robert said.

Any more?

I think the issue to

consider it is a lot of people voted

for Leave on the principles of the

NHS. Where is the £350 million a

week going to the NHS that we were

so blatantly promised by multiple

members of the electorate when the

British public voted Leave? I was 16

at the time of the votes, I was not

given an opportunity to share my

opinion. The only way I could

contribute was to campaign, share my

opinions with older people. Why is

my future...? I was an informed

16-year-old, more informed than lots

of the population.

You would have

had a God in Scotland.

I might have

been a lot more informed that 16

then a lot of adults in the country

and was denied the opportunity...

More informed than the adults who

had been inside the European Union,

who voted to remain into it in 1975,

it has evolved into something we do

not like and have change their minds

and want to come out, want a future

outside the European Union. Most of

the global growth in the world will

happen outside the EU. Why do you

think you know better than people

who have experienced the EU? What

happened to young people that you

are willing to side with the

political interests of organisations

like Goldman Sachs who cooked the

books on the Euro? Young people are,

in your case, slavishly following

what the European Union says and

signing up to what they say, rather

than challenging the elites and

questioning the power?

I think it is

very easy to dismiss young people

because we have not had as much

experience as Older People.

You just

said you knew more than older

people.

That is a misconstruing of

what I said, I said I might have

been more informed than some of the

adults, not all of them, but some,

who voted on Brexit. With my

knowledge of what the Brexited

Tameka Brexit negotiations could

have meant then, it was unfortunate

I was denied the opportunity to

vote. As a young person who will

have to deal with the consequences

of Brexit, whichever way they go, I

think it is only fair that I have a

chance to share my boys. I think it

is very important that the British

people know what they decide on when

we leave the EU. -- I think it is

only fair that I have a chance to

share my voice.

If I give you a

contribution with no partiality, I

am completely impartial, it was a

brilliant contribution and thank you

for making a -- I thank you for your

contribution with no partiality. You

had stood your ground against Robert

Olds, a doughty and experienced

campaigner. You are a member of The

Bruges Group, named after a speech

by Margaret Thatcher who invented

the single market? She would have

been a Remainer?

Margaret Thatcher

was leaving the EU. She campaigned

in 1975 to remain but later changed

her mind. In her book, she was quite

clear. I knew Margaret Thatcher, I

know she was for Leave because she

wanted this country to decide its

own future.

You knew Margaret

Thatcher and we are apparently the

elite?! This is hilarious. It is now

the political elites delivering

Brexit. Both major parties right now

are pro-Brexit, there is not a big

voice for staying in beyond the two

big parties.

The two major parties

have manifestos to get on and leave.

The people of this party,

consistently since the election last

year where Theresa May clearly lost

a mandate for the extreme Brexit she

has been peddling but pushing

anyway, the people are nudging in

favour of staying in.

That is not

true.

ALL TALK AT ONCE

ALL TALK AT ONCE

Over 80% of the

voters voted for parties pledging to

take Britain out of the EU and the

single market.

Because we have a two party system.

Those were the manifestos.

You say

you speak for all young people, only

9% of people under 25 voted for the

Lib Dems. The rest of us voted for

the main parties promising to

deliver Brexit. People have voted

twice to come out of the EU, why

won't you listen?

ALL TALK AT ONCE

A tactical vote

last year against the Conservative

Party.

It is this conflict between what

they think and what their

constituents think and what their

manifesto has said, it is difficult?

There are plenty of people in the

Labour Party who want to remain, and

plenty of people who voted Labour

thinking Labour wanted to remain.

Jeremy Corbyn has been taking this

rather dodgy line between trying not

to offend too many people either

side. To suggest the general

election result was a mandate for

the extreme Brexit that Theresa May

is still pursuing is a fantasy.

What

is an extreme Brexit?

Out of the

single market, out of the customs

union, voting to break up the

Northern Ireland peace agreement.

That is extreme. If we had a Prime

Minister who wanted to bring the

country together, she could have

pursued the so-called no Wayne

Mardle when you are still inside the

single market. There was no mandate

for the extreme Brexit she is

pursuing. I have heard Dan Hannan,

the MEP from the Conservative Party,

regularly saying, as Femi said,

there is no reason to lead the

single market. -- to leave the

single market. The leaders of the

Leave campaign never set out,

deliberately, what Leave would look

like. It is very different from the

Scottish referendum. The people who

wanted independence set out a big

manifesto of what it would look like

so you knew the details. This was

deliberately not done in this vote

so that people could play at how

they want. Rather than calling it a

second referendum, we need a vote on

the final deal. It is voting on the

detail...

There were lots of imponderables

about the Scottish referendum. The

pound, the future of oil, the future

with the EU.

The idea there is no

mandate for hard Brexit or, as I

like to call, Brexit, is just for

the birds. 17.4 million people voted

to leave the EU, the most people who

have ever voted for everything ever

in this country.

Not all of those

voted to leave the market.

ALL TALK AT ONCE

The slogan for the

Leave campaign was to take back

control, which you cannot if you are

in the single market and Customs

union.

Their idea of a mandate for the

second referendum or pulling is out

of the European Union is ridiculous.

It is not a second referendum.

According to YouGov, about 18% want

a second referendum under 16% want

stop it entirely. This is not

Leavers versus Remainers macro, this

is Democrats against anti-democrat.

The thing about Brexit, this

energised a section of the

electorate who had not made their

voices heard for a very long time,

who felt completely passed by

politics. They recognise this as an

opportunity...

Do you support

proportional representation, a feral

goat?

UK bringing in another point

to finish.

Is Brexit does not

happen, if there is a stitch up, a

waiter is avoided, you will destroy

the idea of democracy in this

country for a generation. -- a

stitch up, a way it is avoided.

If

this poll is somehow

anti-democratic, will he supports

proportional representation, there

voting? That is how you get to hear

people the whole year round. The

reason so many people took part in

the Brexit votes is that they knew

it would count for once, it has not

in successive... I would love to

know if you would like people's vote

to camp the whole time around?

What

is the difference between a

referendum and the People's poll?

I

am using the words People's poll

because I want to get away from the

idea that we are rerunning the same

question from June 20 16. The

question on the ballot paper will be

on the detail...

It is another

referendum asking a different

question.

That is why do not like

the word second referendum, it

sounds like rerunning the first

referendum.

It has the option to

keep this in the EU, despite people

voting...

Before we start signing

proper trade deals with President,

what is his name, president at our

day, the mass murdering president of

the Philippines, Liam Fox says we

share common values. Before we

signed deals with human rights

abuses and murder across the world,

shouldn't we take stock?

We should

take stock of what the British

people voted for when it was clearly

explained that voting to leave the

EU would mean coming out of the

single market and the customs union.

The British people want free trade,

they always have. They have always

been open-minded to the rest of the

world and the global future. Talking

about trade deals with other

countries is instinctive to Britain.

Going back over 100 years there were

free trade Hall set up around the

country in Manchester... People want

to be open to the rest of the world,

that is where the future lies, not

the EU.

Wasn't it is likeable,

located by Matt? Eloise?

Does the

future lie with people like Trump,

trading with them, who will put up

trade tariffs when it suits them,

really hurting industries in this

country? We have been sold a pup

when it comes to the opportunities

beyond the EU for trade. You had to

listen to the Japanese ambassador in

Downing Street who

said companies will leave this

country if it is no longer

profitable to trade. The car

industry is under threat, so many

other manufacturing industries are

under threat if we are threatening

to come out of the single market.

Manufacturing has increased since

the referendum, exports have

increased.

It is not Project Fear,

people were not told the realities

about the opportunities for us. We

could be in the EE you as one of the

most impactful, influential leaders

there, writing legislation for other

countries and ourselves in issues

that we care about... We could be in

the EU as.

If we went back in, the

bitterness and resentment among

those people who sincerely believe

we should not be in their because of

the whole project, can you imagine?

The sense of betrayal...

What about

if in ten years' time we are rooted

to the bottom of the economic

strata, like we are now. What if it

gets worse and what if there is the

joblessness and the NHS...

The

joblessness that young people have

in southern Europe because of the

European Union, young people are out

of work in some countries as much

as...

It is because they are in the

euro.

We should show solidarity to

young people on the continent who

have suffered.

Another country said

they were in with a load of opt

outs, now they are out they want a

lot of opt ins.

This is the whole

question about the negotiation. I do

not think the negotiations are going

well, I do not think they can go

well insofar as the EU is not

interested in making a good deal of

us. It is interested in humiliating

us for the sake of making sure no

other member states bowled for the

door. This fantastic study before

Christmas, led by the very venerated

pollster John Curtice, found that

although people are very pessimistic

about the short-term economic

outcomes of Brexit, they wanted to

happen because they are Democrats.

Democracy is at stake, you are

trying to subvert it.

I am so sorry,

we have to leave it there, with a

rosy vision of the future. Will we

be a wealthier country in ten years'

time as a result of this?

We will be

free to decide alone future, that is

the most important.

Wealthier?

Hopefully.

Thank you all very much

indeed.

If you have something

to say about that debate,

log on to bbc.co.uk/thebigquestions,

then follow the link

to where you can join

in the discussion online.

Or contribute on Twitter.

Next, here at Sussex University's

Attenborough Centre,

we'll be debating whether doctors

or parents should decide

when to withdraw life-sustaining

treatment for children.

But before that, make a note

of this email address -

audiencetbq@mentorn.tv -

if you'd like to apply

to be in the audience

at a future programme.

We're in Glasgow next Sunday then,

after a break for Easter,

we're in York on April eighth

for two shows, the usual live

edition in the morning

and a pre-recorded special

on the National Health

Service in the afternoon.

It's a similar pattern on April 29th

from Salford, where the special

will probe masculinity.

And on May 13th from Birmingham,

it's two shows again,

with a special on robotics

and artificial intelligence.

Everyone applauds the advances

in medicine that have enabled many

more children to survive premature

births, congenital abnormalities

and serious illnesses.

There are many children alive today

enjoying full and healthy lives

who would have died just

a decade ago.

This is undoubtedly a good thing,

but it has raised the expectation

that doctors not only can do

something but should do something

to prolong the life of a sick child.

Some of these tragic cases are now

ending up in the courts

when the parents want the doctors

to do more for their child than

the doctors feel is right for them.

Last year, Charlie Gard's parents

lost their case against

Great Ormond Street Children's

Hospital.

It caused a storm on Twitter

and even garnered support

from President Trump and Pope

Francis.

Last week, one-year-old

Isaiah Haastrup died

when the European Court

of Human Rights refused his parents'

appeal to keep him on life support.

And this week the case

of 22-month-old brain-damaged

Alfie Evans has been referred

to the Supreme Court for a decision

as to whether his life

support can be turned off.

On Thursday night,

Channel 4 showed the first of two

documentaries

filmed at Southampton

Children's Hospital

Intensive Care Unit,

where these difficult decisions have

to be faced by parents,

doctors and nurses every day.

In this clip we meet Tallulah,

who survived a very premature birth,

and her dad, James.

As a result of a premature birth,

she cannot breathe for herself, she

is kept alive on a life-support

machine which breeds for her, it is

uncertain if she will ever manage on

her own or how her brain will

develop.

She was born at one lb,

five years ago she would have been

dead. She would not have had the

machines to keep her alive. We don't

know what ten years is going to

hold, we don't know what tomorrow is

going to hold. We just take every

day as it comes.

Well, hello, I was

privileged to see a photograph of

your daughter this morning, the most

beautiful smile on her face,

beautiful little girl, what has she

been through?

It has been ups and

downs from the word go, we have been

in hospital 26 months, we have only

been home since November but we have

been told she won't make it, she

will make it, it is working, it is

not working, in and out of comas...

I could not have expected this at

the start, I did not know anything

like this could happen to children

so young, until I was in the

situation. And then we are coping

with it each day now.

What is she

like?

She has her own personality,

she loves television, she claps and

sings along. She dances along,

sorry, two songs, she plays with her

little sister. She interacts with me

and Rhianna very well, she has a

good quality of life. She is

enjoying her time at home.

Was it

right that yesterday, she was making

noises along to the Teletubbies?

Yes, she cannot quite speak, she

kind of croaks, almost squeaks, but

she does try to sing along to it.

And she has a track your to me, for

her life support?

Yes, straight into

her throat, and 24-hour care, so we

have had two nights of cancelled

carers, so we have been up to

nights, pretty much, and then work,

and then here today.

Thank you so

much for coming. On the programme,

some tough bits, apart from seeing

these beautiful children, and

focusing on the moral and ethical

issues, one particular one of those,

which was raised, was by some of the

doctors about resources. And the

amount of money that it costs to

keep some of these children live.

Given the fact that there is a

finite amount of money and other

children are not getting the support

they might get, who might have a

better chance of survival. Such a

difficult subject to broach, doctors

were tiptoeing towards it, when you

hear that debate, do you find it

callous, in a way?

Everything does

cost, so all these machines do cost

a lot of money to run, but no one

can put a price on a family member

to live. At the end of the day, you

have little bits and bobs that she

will use every day that is quite

pricey, but it is all worth it. She

has a good quality of life. There is

no one that should live over someone

else. It doesn't work like that.

It

needs to be addressed, but then

there is other places, such as

resources going out to people having

gastric bands fitted, Friday and

Saturday night down pubs and clubs,

the Ambulance Service there.

All of

them that are self-inflicted. And

these children do not ask to be ill.

So, I don't know why we are

questioning the money going out to

the children. They don't ask for any

of this help or care, they are the

ones getting it.

APPLAUSE

Peter, you featured in the

programme, Dr Peta Coulson-Smith,

University of Southampton, clinical

ethics, James was so articulate with

that, and any of us would do

anything we possibly could to extend

the life of our child in that

situation, various different

situations, what about this debate

about resources, which comes up

again and again and again, people

like you, tiptoeing towards it, but

you also say it is important to

discuss it, why is it important?

I

think there are no easy answers in

any of this debate. As a doctor, as

a paediatrician, at the bedside,

resources do not come into the

equation, the NHS, the beauty of the

NHS is that it is free at the point

of delivery. Really, I think part of

the issue is the fact we cannot talk

about it in the hospitals. It is

something that has to happen at a

national and political level, and we

need to have strategies to develop

answers about this. The costs are

increasing...

Three quarters of a

million, that is the cost.

For

somebody with long-term ventilation

with a track your to me, as you

mentioned, around £500,000 a year.

And that is for basic care. If the

child then needed hospitalisation on

top of that, for a chest infection,

for instance, there would be another

cost as well. It is a really

difficult conversation. It is

something we as doctors

something we as doctors and as

ethicsists to not have answers, the

only way to do it is to have

discussions, that is why this

programme has been so great to

highlight this. -- ethicists.

One of

the things that people are saying is

that there are children not being

treated who may have a better

prognosis, and they are not being

treated because some are, is that a

fact?

It is difficult to answer that

in a sense, because there is no

direct consequence, when you are

delivering treatment for a child, on

an intensive care unit, there is no

direct consequence that you can see

as a doctor, but there is a

consequence, of course, that those

resources are being used for

something which is not going to

another area. And it feels quite

callous, speaking about it, in

financial terms, and I just think

that it is something that we all

need to discuss and think about,

where we want NHS resources to go,

because what we are talking about is

a subgroup of children, a very small

amount of children, that we are

talking about here. The numbers have

doubled, approximately, in the last

ten years, of children having

long-term ventilation.

Should

doctors decide, all parents?

Whether

to withdraw life-sustaining

treatment? Ultimately, I think

doctors to decide. But, the caveat

to that is that the parents views

are central to any decision that is

made. It is a collaborative

decision, it is something that

nobody wants to talk about, it is

something that is incredibly

difficult, and the child's best

interests are absolutely at the

forefront of every decision that is

made.

Lubna, location or son had his

life-support removed, did you feel

that it was a collaborative

decision?

My son was five months old

when he passed away, when he was two

weeks old he got really sick, ended

up having an operation, at that

point they said to me he will not

make it, but he came back and he was

OK. And I think, for them to say

that to a parent, that your child is

not going to make it, no one wants

to hear that, no parent wants to

hear that. But just before he got

sick, the night before, I did say to

them, he is not well. They did not

listen to me. So the next day, when

they did realise he was not well, it

was quite late. But he was fine

after his operation. He made it off

the ventilator, as well,

unfortunately, he went back on it.

And when they said to me, he's not

going to make it, and if he does,

maybe he will be disabled, I said,

well, that is my child. I don't

care. I want him, do what you can.

At that point I said, could I gather

opinion from another doctor. But

they refused, they said, you will

get the same answer from everybody,

which I thought was unfair. Because

now, it is like, what if, what if

someone said something different. It

will always be there. I ended up

losing my child, because they then

decided that they were going to

withdraw care. And we had to make a

decision of what time and when.

Which I don't think was fair,

really, but, the doctors were

brilliant, but sometimes they should

listen to parents. I was his mother.

As a mother, I know what my child is

going through...

And you understand,

you are going to look after your son

for the rest of his life am a you

understand the invitations and

consequences because you are going

home with him.

Yes.

Do you think

because of that, the decision should

be with you?

I think so, yes.

What

was the moment like, when there was

nothing you could do...

It is the

worst thing that can happen to a

parent, if they did give me an

option of getting another opinion,

and that opinion was the same as

what they said, it would have made

me feel better, does that make

sense? But I did not get that

option. So, for that, it is done

now, but I will never forget, he's

my baby. And I got five months with

him, that will never be enough for

any parent, it is the worst thing

that a mother can go through.

that a mother can go through. I

think a parent should get that

chance, they should decide what

happens with their child, basically.

Always?

Of course.

Steph Nimmo,

Daisy had her life-support removed,

seven years old.

She was 12 when she

had the life-support removed. Seven

years old when she was referred to

palliative care. She was born with a

really rare genetic disease, we did

not know prenatally that she would

have this.

Who should have the

decision? Let me start at that

question.

I was lucky, I had a lot

longer with my daughter, and she

took us to the edge, many times, but

because we were referred to

palliative care very early on, there

was, as Peta said, there was

collaborative conversations, because

much of it is so difficult, you have

to take the emotion out of it. I was

Daisy's mother.

Who can do that?

It

is impossible, you have to bring

down a barrier because you

desperately want to do the right

thing for your child and some time,

doing the right thing for your tile

is actually being incredibly

selfless and letting them go. And

how can a parent make that decision

on their own? And didn't fact, I was

on my own at the end, my husband had

died before Daisy died, so during

all this journey, I was living with

this child that I knew was going to

die, then my husband died. And I was

aware that I was going to come to

this... If I had not been surrounded

by an incredible team of

professionals, and we could talk

through in the cold light of day

what would happen, what would it be

like? Daisy was on a form of

life-support called total parental

nutrition, she received all her

nutrition intravenously, through a

line into her bloodstream, 24/7, and

she was very aware of what was going

on, although she had a learning

disability, she had an incredible

quality of life, she had opinions on

things, she lived a very joyful

life, but I had always said to her

palliative consultant, when those

moments get compressed, when the

moments of joy gets compressed, I

know that we are coming to the end,

and... But we just did not know when

the end would be. As it was, it

happened quite quickly. For me, she

had a cardiac arrest, the doctors

said, we can keep resuscitating pots

are on dialysis... I said, no, we

have two let her go. -- keep

resuscitating, put her on dialysis.

I feel in many ways I was fortunate

because I had a lot longer with her,

but I also had many opportunities to

have very difficult conversations

with the palliative team, the team

who cared for her and grew to know

as both, at the end I felt it was

very much a collaborative decision,

it was just the right thing to do

for my child in the end.

That they

must have been awful?

It was

horrific. I was on my own, three

other children who had

other children who had already gone

through a huge loss of their dad.

But in a way I feel that I gave my

daughter a good death. We had

prepared for it, we had planned for

it. She was in pain and we let her

go. People ask if I would have her

back, no, because she would still be

in pain, still deteriorating, she

would no longer have the

quality-of-life that she had. She

had an amazing 12 years and gave as

an amazing 12 years, and thanks to

the NHS who kept her alive. When she

was first born we were told she

would probably not see a year, she

gave as 12 incredible years and

taught us so much about ourselves. I

felt it was her time, but, as I say,

the support of excellent palliative

care team allowed us... Allowed me

to be at peace with that decision at

the end, which was incredibly

important.

But we can so much

understand Lubna 's situation, which

is different.

There is no right or

wrong. I think it is really

important that we have these

conversations and we reflect that

actually sometimes children do not

make it out of the neonatal unit.

Medical prop -- medical science, I

think the doctor says in the

programme we can keep them alive but

not cure them.

What about the

situation we brought up earlier and

Peter acknowledged, such a delicate

area and we want to tread so

carefully, quite properly and

rightly, because that whole issue of

NHS resources... As I say it now it

is a difficult thing to say. What

are your thoughts? I only say it

because the doctors in the programme

wants people to discuss it.

And I

absolutely empathise with those

doctors, I thought the programme was

brilliant because the doctors don't

get the opportunity to show their

point of view, with all the social

media and the publicity around these

big cases of the doctors are not

allowed to comment. I think it is

really interesting for us to see the

dilemmas the doctors have, because

they absolutely car. But their hands

are tied, they have pressures. We

all know there is

all know there is huge pressure on

intensive care beds. Time and time

again, Daisy would be scheduled the

surgery, she always needed intensive

care after surgery, that there would

be no bed available and so the

surgery would be cancelled because

it is such a specialised area.

There

was a great quote from one of the

doctors which summed it up

amazingly, he said very quietly and

very thoughtfully and there was a

lot of sadness when he said our

capacity to support life now exceeds

our ability to treat the underlying

disease.

That is exactly it. Well we

are making incredible advances in

medical science, what we are not

catching up with is what we do want

these children leave.

And it raises

the expectations of parents. Peter,

I do not know if you have a view,

the new phenomenon in this, the

social media campaigns, very often

the involvement of religious groups,

social media campaigns. -- Peta, I

do not know if you have a view.

President Trump got involved. Does

it cloud the issue?

It makes it so

difficult for the parents. I put a

lot of trust and faith in the

medical team that surrounded me. It

is like when you're pregnant,

everybody wants to give you an

opinion on what you should and

should not do. You open up to the

world stage and the poor parents

stuck in the middle, you lose sight

of what is the right thing to do,

the emotion takes over.

Charlie

Gard, some of the medics there, the

medical practitioners, had death

threats?

The false hope that comes

through from the social media

campaigns is unbelievable. As you

know, it is a long process and you

know absolutely everything that is

going on. People in social media do

not know the ins and outs. The

doctors... I could not ask for

better care, I could not asked to be

informed more. But this false hope,

people putting in their two Panis,

it is giving a dream that is not

even bear in the first place, that

is why it is such a disgusting

treatment of the Paris -- everybody

is putting in their 2p worth. I do

not think it should be done.

Individual family should be kept in

the circle they are in. Be informed

as much as they ran and can't -- as

much as they are and come to a

decision and a way forward, just

them.

Yeah.

APPLAUSE

Dr MacKenzie Graham, I want to

discuss with you this issue about

what is a quality of life?

Where do we set the bar? Because if

a little child has a tactile world

of cuddles and smiles but can't

communicate and has tubes, that is a

quality of life for a human being?

In a certain respect we might think

that some of these young children...

Maybe their capacity for well-being

is diminished compared to what a

perfectly healthy Child could

experience, but you are right.

Unless it is a life of complete

suffering there is certainly some

value. Just being held by the

parents, they can feel tactile

pleasure. Things like that. Back

contributes to value. I wanted to

remark on something like Peta said,

the best interests of the child are

foremost. That is a values question,

to me, and I think that discussion

needs to happen between physicians

and parents, because physicians will

be the authority on clinical facts,

here's what you can expect with

respect to what your child's life

will be like. But I think it is up

to the parents to determine what

they feel, according to their own

values, what is necessary for their

child's quality of life, because we

will each judge that differently.

Because the parents have to support

the children, you guys are under a

tremendous burden. I get the sense

that maybe you were not quite

sure...

It is not a burden, it is

our daughter, I don't like that

word. No, but there is so much

stress. It is so hard on a daily

basis. I have to... I have two

daughters, one of which is disabled.

My other half is the carer in the

daytime. I have to work a lot,

support them all, plus we had to go

with the other factors in this

thing. It is such a hard thing to do

on a daily basis, so I can see some

people that might not be able to

cope. They had to think of the

bigger picture and how they will be

in two years when you go home. Like

I said, our carers cancelled on is

the last two nights. No one but me

and Rhianna will have to stay awake

to look after her. Once you are out

of hospital you are very much on

your own, that is where Rick gets

hard.

If I can, when we are talking

about what is the best interests of

a child, that is an extremely high

standard, doing the best possible

for a child. You have your other

children to consider so there will

be trade-offs between interests.

Providing the child is not suffering

an unacceptable level of harm, if we

think of it in terms...

What if the

child is suffering and the doctors

say this is terrible, but the

parents want the child to stay

alive?

I think that is where the

threshold is. I am not a parent but

based on what I am hearing I can

imagine that parents feel like this

is my child, I need to do everything

I can for this child because that is

my responsibility, I love this

child.

If I were in that situation,

it would take some convincing.

It

can make it very difficult to remain

as objective as you can in

emotionally fraught situations like

this. Provided there is not this

level of suffering, it is up to the

parents. But sometimes it needs to

be taken out of the hands of the

parents if the child is suffering.

As a leading politician, Caroline,

does the debate about NHS resources

and how much we put into the NHS and

how much we prioritise that

politically come into that?

I think

it has to somewhere. It is an

incredibly difficult conversation,

even more difficult when you are

talking about specific cases rather

than more of an academic discussion,

but it has to come into it

somewhere. I think in terms of the

process, what Steph was describing

of the collaboration between

hospital staff and parents, that

needs to be strived for. But if

parents are disagreeing with the

medical profession over the future

of the Child and if we are to put

the well-being of the child and the

rights of the child at the heart,

then sometimes I can see the role of

the courts. I know this seems to be

very callous, but it is enormously

difficult. Sometimes it is the right

time to say goodbye and it is kinder

to let go. For a parent to make that

choice on the road is immensely

difficult. We are not in a world of

black-and-white, these are

judgments, shades of grey, they are

difficult, it is not just good guys

and bad guys, as you would hear on

social media. Everybody is trying to

do their best for your child. If

there was a disagreement between the

parents and the medical staff than I

think we should take it to the

courts.

I think one of the doctors

said I would of course fight tooth

and nail to keep my child alive, but

I would want the doctors to make the

decision.

I was just going to say

that I feel really sad to hear that

your experience was not this

collaborative approach and that you

feel like that decision... You were

not really part of that decision. I

would say that on the whole we get

it right, and I would say that on

the whole people are involved and

that was your experience.

Do you

think the social media campaigns

with false distrust of doctors, and

suspicion?

I really do. I think the

medical profession has been very

much demonised over the last few

years and that is why we embarked on

this programme with great

trepidation. We did not want to

compound that in any way. But I

think what it shows is a very

balanced view of children and

agreeing procedures, tracking

changes and some of the changes that

the parents, nursing staff and

doctors experience with these

children. I have seen lots of

campaign where there are headlines

such as Give The Child A Chance.

What you do not see is what the

level of suffering is. We do not see

the individual case. James said

really nicely earlier about we need

to see each child individually,

their own circumstances, situations,

family setup, everything.

As

Caroline said, not the black and

white. Thank you all so much for

coming in and speaking so honestly,

it is such an important debate. I...

I will never forget that picture you

showed me a trailer this morning

with the snow behind her and such a

big, beaming, beautiful smile. She

is such a beautiful little girl.

Thank you very much indeed, James.

As always, the debates will continue

online and on Twitter.

Next week we're in Glasgow,

so do join us then.

But for now, it's goodbye

and have a great Sunday.

Thank you so much for watching. That

was your Big Questions.