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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.
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,
"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
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.
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.
for a second referendum, it is a
plot to stop Brexit backs by the big
banks, Tony Blair, the political
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.
like a silence! LAUGHTER
There is no answer, there is no
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.
thought that we did.
We did, in June
2016, and the general election.
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. .
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?
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 am a listen...
Was it made
clear? It was made clear by Michael
Gove, Boris Johnson, David
me to quote Daniel Hannan,
absolutely nobody is talking about
sacrificing our place in the single
market, that is what he said!
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
Why don't you believe in
democracy, why don't you trust
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?
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
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.
have a representative of the
political elites... (!)... LAUGHTER
The idea that
the idea that Nigel Farage is not
the political elite, that is
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
That is some very big negatives.
That is before we get to Northern
Ireland. I really worry about
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?
should be unified, the country made
a decision, now we need... Now we
need to enact the decision.
the country made a decision.
than trying to fight the referendum
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?
would always have campaigned as I
have done for nearly two decades.
Would you have campaigned for a
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
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
If you had the chance of a
second referendum, you would have
really stepped up to the plate.
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
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
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.
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
Five years, ten years
down the time... There will be a
population down the road that is
saddled with something they do not
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
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
Does he represent the elite?
am saying, elitist.
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
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?
It is almost a given
that we will know the outcome of the
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?
knows at that point? I would fight
that referendum tooth and nail.
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
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
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.
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
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.
is what Robert said.
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.
said you knew more than older
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?
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
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
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
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
Because we have a two party system.
Those were the manifestos.
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
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.
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
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
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
Do you support
proportional representation, a feral
UK bringing in another point
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.
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?
is the difference between a
referendum and the People's poll?
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
That is why do not like
the word second referendum, it
sounds like rerunning the first
It has the option to
keep this in the EU, despite people
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?
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
Wasn't it is likeable,
located by Matt? Eloise?
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
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...
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...
joblessness that young people have
in southern Europe because of the
European Union, young people are out
of work in some countries as much
It is because they are in the
We should show solidarity to
young people on the continent who
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.
Thank you all very much
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
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 -
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
It caused a storm on Twitter
and even garnered support
from President Trump and Pope
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
filmed at Southampton
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
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
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
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.
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?
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.
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.
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.
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?
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
Three quarters of a
million, that is the cost.
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.
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
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
doctors decide, all parents?
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
Lubna, location or son had his
life-support removed, did you feel
that it was a collaborative
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
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.
Do you think
because of that, the decision should
be with you?
I think so, yes.
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.
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
Who should have the
decision? Let me start at that
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
Who can do that?
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.
must have been awful?
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
But we can so much
understand Lubna 's situation, which
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.
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.
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
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.
Gard, some of the medics there, the
medical practitioners, had death
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
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
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
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
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
If I were in that situation,
it would take some convincing.
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?
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
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
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.
think the social media campaigns
with false distrust of doctors, and
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.
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.