Human Organs Wanted Week In Week Out

I want to know that there are hearts in the bank, so there's one

for me. This teenager needs a new heart. Without it, he will die. The

Welsh Government says it has a plan to help, but will it work?

something's working, and it is in Wales, why break it? I don't think

it's unrealist toik expect we will get more organs available with this

system. Tonight we hear the despair of those who have no option but to

wait. The worst thing is what you're praying for is someone to

have an accident, which is probably a bad thing to do as well. You're

paying for someone's misery. those who've given. They said that

he hadn't really got a chance. So the consultant then said "Will you

donate? Would you like to donate his organs?" And those would doubt

a new law will save more lives. It's ill considered and it's not

going to consider the additional organs which the patients are

48-year-old Mark Schofield from Porthcawl has had two kidney

transplants. Week In Week Out first met the former surf champion five

years ago. His first transplant had failed and he was waiting for

another. I'm not prepared to sit down, lie down and play dead. I've

got to take the gamble. At the time, Mark was having to undergo hours of

dialysis every day. It was a routine that dominated his life.

Time, he thought, was running out. I've not finished my life. I want

to do more. Now I've got to look to the best place I can get the

kidneys from. Mark decided to make a stkrastic decision. He travelled

to the Philippines to buy a kidney instead. Don't worry now. We'll be

fine. Today he finds the programme and those memories hard to watch.

It makes me think how desperate I must have been, for sure. That was

pretty scary being on that machine over there. Funny enough, now I

look at it and I'm quite scared for him. I'm quite, you know I'd be

worried now about that because of where it is and stuff. Yet at the

time it didn't worry me at all. Because I didn't think I could have

it here, so there was the best thing. In his case, there simply

weren't enough kidneys available through voluntary donations. He

believes the current system is loaded against content. If you have

a question you're not sure about, just say no, it will be fine.

That's what we do. That's our nature. If in doubt, don't do it.

The current system of opting in means that those who want to donate

their organs after death make an individual decision to sign up for

the Organ Donor Register. More than 30% of people in Wales are on that

list. But those who aren't registered can still have their

organs donate today their families agree. Seeking approval for that

consent is the job of the organ donor team. The first part is

actually explained to them that your loved one has died or there's

no hope of recovery. They need to accept that there is no hope of

recovery before broching that subject. Perhaps that's where some

clinicians go wrong because they haven't accepted death. Once the

family have accepted their loved one isn't going to get better or

they have died, it's only then we broach those issues. You would

frame it in terms of - did they ever express a wish regarding organ

donation? We can check the Organ Donor Register which may help to

inform that decision. Being on the register is valid, legal consent.

Butt family are a very important safe guard in all of this.

present, the family of the potential donor has the right of

veto, which means that organs can't be taken without their consent. 35-

year-old Becky Kelly from Prestatyn has been faced with just such a

decision. Her 18-year-old son Antony died in March this year.

had gone to a nightclub with his friends. He was coming back in a

taxi. He had an argument with his friend in the taxi. He thought,

right, I'm going, you know, the taxi was going 30mph and he decided

to jump up, open the door and jump out of the taxi. I sat in A&E and a

consultant told me that he had a serious head injury. They'd

contacted Walton, which is a specialist hospital, and they had

said he hasn't really got a chance. So the consultant then said - will

you donate? Would you like to donate his organs? Well, it was

shock. I was so shocked when they told me about this accident and you

know, I couldn't even think straight. Except the fact that my

son had said he wanted to donate his organs. The memory of that

conversation with Antony made Becki's decision easier. He joined

the Army when he was 17. He always wanted to be a hero. He loved the

Army. Four weeks before he passed out, he decided to leave and come

home. There was a job lined up for him. It was the Army that actually

pushed him to want to donate, but then, yeah after he had come out of

the Army, he still wanted to donate. For Becki, the current system

worked. But latest figures show that 45% of families in the UK, who

are asked to donate their relative's organs, declined.

There's a degree of questioning around can I ask why you've said

no? It might be because it's built on myth - I don't want my son cut

into pieces, I don't want there to be a delay in funeral arrangements.

That's why I'm there, to provide the correct answers to any

questions that may come up. If the answer is still no, then that

family have to live with that decision. If somebody is carrying a

donor card an the family say no, what's the dilemma that leaves wu?

Yeah, that's a difficult conversation because obviously that

patient has expressed their wish. They may have put themselves on the

register or carry a card. That presents us with a tough

conversation, but ultimately, that family have to live with their

decision. If they would find it easier to not go ahead with organ

donation and live with that rather than feel like they've gone ahead

with something that they're not comfortable with, it's a real shame,

but it's something that we'd have to live with. 41 people died in

Wales waiting for a transplant in the past year. The Welsh Government

wants to increase the number of donors by changing the system to a

soft opt-out. Under the new law from 2015, everyone in Wales will

be treated as a potential donor unless they opt out. If you're over

18, have lived in Wales for more than six months, your organs will

be automatically available for transplant after you die. Under the

new proposed system you can opt in and very similar to the sip waigs

that we're in now. Additionally you can opt out. Both those are what we

would term "expressed consent". There will be a group in the middle

who haven't expressed their view or choice either way. In that group of

patients they will have deemed to have consented and be willing to

donate their organs. It's claimed that 15 new donors would become

available under the new system, saving more lives through multiple

transplants. Wales will be the first country in the UK to

introduce this new approach. Around 300 people in Wales are on the

waiting list for a transplant at any one time. Mark was waiting for

four-and-a-half years. In the end, he felt he had no option but to try

and buy an organ. I didn't think it was going to happen. It was, sort

of, this is my last roll of the dice really. But the transplant he

wanted in the Philippines was called off at the last minute

because the organ wasn't a suitable match. Mark and his wife had to

give up and return to Wales, back to a life on the transplant waiting

list. I am going to get it. I will get it, even if I'm 75 years old

and I'm over here, I will have a transplant, I'm telling you. Seven

months later Mark did get the call he'd been waiting for, a kidney and

fresh hope had been found. The transplant was successful, despite

that Mark has been warn today will fail in future and he may have to

go back on the waiting list. always live, even when you've got

one, you always live with the fact that it's not going to last forever.

You can sometimes get so close to your situation that you think

everybody else's is not as hard or as tough as yours. There's people

in, I know there's people in worse positions. I'm not sitting there,

but... Sometimes you've got to feel sorry for yourself, sometimes.

believes the proposed opt-out system will give him a better

chance of an organ in future. If the law is changed, it could be

introduced in three years. Opt-out isn't a new idea, but why change

now? There is a chronic shortage of organs available for

transplantation, so we believe to introduce a soft opt-out system now

is the right way forward. What are the benefits of this approach?

benefits are that we hope that it will increase the amount of organs

available for transplant. In other countries that have introduced this

legislation there's been an increase in the amount of donors

receiving organs. This is the way that we think we should now go in

Wales. In 2008, a Welsh Assembly inquiry into organ donation came to

the conclusion that the system the Government now wants to introduce

wouldn't work. An all-party committee was chaired by former AM,

Jonathan Morgan. When we started the inquiry I was quite open to the

idea that a change in the law could make a significant difference, that

perhaps there were problems in the legislation that we could deal with

that would actually allow Wales to go its own way and do something

better and show the rest of the UK that something different could be

done. But my view changed quite slowly but surely offer the period

of the inquiry and in particular when we went to Spain and examined

the system there. What we found when we visited Madrid, although

the law changed in 1979, nothing really altered in the rate of organ

donation until 1989. This change came about not because the law was

changed but because ten years later, after seeing no improvement, the

Spanish government decided to invest in transplantation and

coordination in training and recruitment. That made the biggest

dirpbs. A UK Government taskforce said that the question of opt-out

should only be revisited if the number of deceased donation has not

increased to 50% by 2013. In Wales the current figure is 49%, almost

meeting the target. If donor rates are already increasing, is a change

in the system necessary? Anecdotally I would have said that

the overall view is that it won't make a huge difference. Consultant

John Saunders is the chair of organ donation in Abergavenny. There are

naysayers who think it will make it worse. There are enthusiasts that

believe it could deliver. Because we will have an opt-in register

continuing, this creates confusion in the public mind. Despite the

efforts to inform, it will invite confusion. This will lead to lower

donation rates. If there is a single example of somebody from

whom organs are taken, despite having opted out, a single case

like that could cause enormous damage to the whole programme.

Under the new law, doctors will have the legal right to take an

organ, but what if the families of donors disagree? Families, do they

have the right to say that no, you can't have any relative's organs?

Families don't have a legal veto. However, if... They don't have the

right to say no? They don't have a legal veto. As I've said,

clinicians have a duty of care. They don't have the right to say

no? They don't have a legal veto. Which is - they don't have the

absolute right to say no? They don't have a legal veto. Right.

That may mean you could leave yourself open to legal action in

future. Obviously there are lots of legal issues. Lots of lawyers are

working on this. We have the confidence to bring the bill

forward. What this means is that doctors will have the legal right

to take organs, but in reality, clinicians say they will abide by

the family's wishes. What is clear is that the proposals raise many

ethical and legal dilemmas. # Happy birthday to you #

The anticipation of life to come is always a big part of turning 18.

But for Mitchell Powell, from Swansea, this is a particularly

poignant celebration. Born with a life-threatening heart condition,

he had open-heart surgery three times bit time he was 15. There

have been days when he didn't think he would live to see this one.

first two open-heart surgeries I was too young to think of the

conconstituencies or risks of the surgery. After my last surgery,

when I was told I needed one, I was 14. I remember planning my own

funeral, what song was going to be there. I'm going to be, if I was

going to be buried in a Swansea City kit. I honestly thought it was

going to be the end of it. Because of my heart condition, I've always

had something in my mind saying that I'm not going to make it to

this age. He's 14 and he shouldn't be talking about funerals. He

should be talking about football. Mitchell's mum has had to watch him

endure a lifetime of hospital appointments and operations. It's

been horrendous watching him go through all the pain and suffering

he has gone through. She and his family know he will need a heart

transplant, they just don't know when. They have to wait for his

condition to deteriorate. He's got to have less than a year to live

before he's offered an heart transplant. Then come as long that

a fitness test to make sure he's fit enough to have a transplant.

Plus because he's got a lot of complications he'd be screened as

high risk. I'm sure if the organs was available they wouldn't wait

for Mitchell to have less than a year to live. Why risk him being

too ill? He's been ill most of his life. Let's give him a chance and

give him a heart now. Unfortunately it doesn't come to that because

there aren't enough organs. Even before the Welsh Government's organ

donation inquiry in 2008, a Department of Health taskforce

concluded an opt-out system should not be introduced in the UK. A

former chair of the British transplant society, Professor John

Fabre gave evidence to the taskforce. He has concerns about

the plans for Wales. I see this as a piece of legislation that is ill

considered, has been pushed through in the face of strong evidence that

it's not going to do what it wants to achieve and that it's not going

to deliver the additional organs, which the patients are waiting for.

I think what it can create is a tension in the organ donation

process. Families will feel that the state has rights over their

loved one's body. Fundamentally, what the system desperately needs

is trust. It desperately needs trust. Anything that eroads that

trust is potentially harmful. March a BBC poll showed that 63%

backed the proposed system. But according it a Welsh Government

survey, published last month, support has dropped to 49%. One of

the main concerns was a lack of information about the changes.

Whichever system is used in future, public confidence will be crucial.

Wales has been very successful in increasing its organ donation rates.

It's also been very successful with its organ donation register. So

that we now have well over 30%, I think 35% of people in Wales on the

organ donation register. We had a marked increase in the number of

organs given in the last ten years. And Wales has consistently out

performed England. Is that a better way to proceed through voluntary

donation? It's the ideal and least controversial way to proceed. One

would like to have truly compelling evidence that there's going to be a

benefit in changing things. That evidence is not compelling. But the

Welsh Government has been convinced and it's determined to change the

system. Those Those people who are worried about what you're trying to

introduce are saying, it's unrealist to suppose you're going

to get many more donors. If something's working, and it is in

Wales, why break it? I don't think it's unrealistic to expect that we

will get more organs available for transplantation with this system.

We've consulted widely. The majority of people are in favour of

this system. This bill obliges Welsh ministers to have a very

wide-ranging and extensive communication and education

programme. I believe the time is absolutely right now to bring this

piece of legislation forward. average lifespan of a donated organ

is about ten years. What that means for Mark is that the clock is

tucking faster every day. -- ticking faster every day.

dialysis you are in limbo, hoping and praying for a phone call. The

worst thing is what you're praying for is for someone to have an

accident, which is probably a bad thing to do. You're praying for

someone's misery. While he tries to live life to the full, he's been

having health problems and has had to have tests on his transplanted

kidney. The waiting, all the time, is probably the hardest bit really.

I just try and think positive. It doesn't always work, sometimes when

you're on your own and lying awake at 4am, it gets to you. The Welsh

Government says it's spending �5 million setting up and promoting

the new system. Who will pick up the bill afterwards? There is no

indication that the Welsh Government is going to necessarily

offer an additional pot of money to fund these transplants. Professor

Ceri Phillips warns in the short- term Welsh health boards could

struggle to meet the extra costs of providing services needed to

transplant organs. The difficulty now in the current climate is that

obviously, health boards are suffering severe financial

restraint. There is very limited spare capacity in the system to be

able to engage in new technologies and undertake more and more

operations, without having savings to release resources and make

savings elsewhere. He's worried that this will put more pressure on

already stretched hospitals and without adequate resources, organs

could go to waste. We're already struggling in many hospitals in

Wales because of the pressure on critical care beds on intensive

care, which has a knock-on effect on theatre time. We could see that

there will be system where there are, it's impossible to actually

undertake the operation and in that sense, the potential organ may well

not actually materialise. Potentially a beneficiary will not

receive the benefits that the policy and the bill is seeking to

ensure will be the case. Spain has the highest rate of organ donations

in the world. It also has around three times as many intensive care

beds as Wales. The number of ITU beds here has fallen 5% year on

year, which is something John Saunders says places too much

strain on services. I see in my own hospital and ITU that functions

almost at capacity the whole time. Trying to squeeze more through it

would be difficult. I'm sure that must be true of other ITUs

throughout Wales. There may need to be additional investment in

intensive care and theatre facilities. Account Welsh NHS even

find the money and the skilled staff to make the new system work?

One of the things you're going to do is require local health boards

to take on the additional cost of providing beds and theatre time, at

a time when they're already stretched to breaking point to

introduce this new legislation. Is that sensible? We give health

boards huge budgets. They obviously will have to work within that

budget. I've already said we're not expecting hundreds of operations to

come out of this. But we do expect many lives to be saved. Becky

Kelly's son saved lives. His organs have given someone else a chance,

but making the decision wasn't easy. We had to turn the ventilator off.

He had to die within a certain amount of time. His heart had to

stop beating and he had to stop breathing in a certain amount of

time so that his organs were oxygenated. Then he did eventually

go in that small amount of time. After he'd gone, they asked me

whether or not I'd like his hand prints and locks of his hair. Of

course, I said yes. Then I had a letter about a week afterwards

saying he had saved a young man's life of 32, who is going to get

married and he's got three children. For Becki, her son and the life he

saved, the current system worked. Having Antony's organs given to

other people, you know, to save lives, makes me feel absolutely

amazing. I'm so proud of him. He's so proud of himself. I know it. I

feel it inside, how proud he would be of himself for saving these

people. If the law does change, it's not clear how many patients in

Wales will benefit. Over the last four years, 70% of organs retrieved

here were used in transplants outside Wales. The greatest confrom

this is that this idea of Welsh organs for Welsh patients and Wales

is part of the UK. Welsh organs get used in England and like-wise

English organs get used in Wales. But people in England and Scotland

and Northern Ireland will benefit from more Welsh organs if we do see

an increase in the rate of organ donation. I think we need to make

that clear to people that if there is any increase in the rate of

organ donation in the future, there's no guarantee that Mrs Jones

down the road will get the kidney she needs because for whatever

reason, that could be used in Bristol. The kidney Mark received

was from outside Wales. What matters, he believes, is that more

organs are available and if that means changing the law, he'll

support it. I hope, let's put awe hope on this, that if we do it in

Wales, then other parts of the UK will follow. Because yeah, I would

be quite I would be a little bit grieved if it's only in Wales and

not anywhere else. I want it to be Wales that says right, OK, we'll go

first, you guys follow. I think they will follow. Because I think

that people will. They just sometimes we need to be led to

water, don't we? We all need to be led sometimes. This is the time,

hopefully, we can lead. If the new policy is introduced other

countries will be watching what happens here. But some feel we're

heading in the wrong direction. pop Titians want to be seen to be

doing something that's good. They need a quick fix. Pre presumed

consent, we're told let's go the extra mile, do this, do that. It's

a quick fix. It's not going to work. But what leads the debate? Hard

facts or sentiment and emotion? It's almost as though the debate

has become one of good and evil. That somehow those people who

support a change in the law are good. They're doing their guardian

angel bit looking after those who need that organ transplantation.

And those of us who are somehow against presumed consent are taking

a rather evil, nasty approach because we're therefore getting in

the way of people who are dying in Wales because they can't get a

transplabt. I don't think Government has taken the right

decision based on the evidence available to it. You can't have

Government making decisions purely on emotion. That's dangerous.

Certainly I wouldn't say that, guardian angels and evil. That's

raising the emotion. I can see it's an emotive issue. It's an emotive

issue for a lot of people who are waiting for transplants. I just

think this is the right way forward. As a Government we believe it's the

right way forward. Certainly a lot of miff colleagues in the Assembly,

cross-party, think it's the right way forward. If it saves lives,

then absolutely it's the right way forward.

Assmebly Members are due to vote on the new Human Transplantation Bill

in January. But the final decision might not rest there. The Welsh

Government's authority to change the law could be challenged in the

Supreme Court. Some think there's a much simpler way forward. You don't

need to set up an expensive system, pass legislation. Tell everybody

that tonight you'll talk to your husband, wife, your mother, father

and say - yes, I do or no, I don't. Everyone agrees that more organs

are needed for transplantation. The issue is how that's done. Now he's

18, Mitchell just wants the chance at life. It's sad to think people

are dying and they could be donating their organs, but because

they're not, other people are dying too. I don't want that to happen to

me. I don't want eventually, you know, if it's six months, six years

down-the-line, I want to know there are hearts in the bank so there's

one for me. A brighter future is what Mark would like to believe in

too. But he's just been told by a doctor that a virus might be

attacking his transplanted kidney. I felt that this kidney being such

a good match was going to last me much longer. It was going to be

sort of, it might see me out. It doesn't look as if that's going to