Tue, 21 Nov 2017 21:30 Y Byd ar Bedwar

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-What's this? An injection.

-I don't like doing this.

-Two years ago,

-we filmed with a young woman...

-..who was waiting for a kidney.

-Once a week. Every Tuesday night.

-At the time,

-Wales was introducing a new law...

-..about organ donation -

-deemed consent.

-Tonight, Llio Dudley is back

-on Y Byd ar Bedwar.

-She's taking us on a journey to meet

-people waiting for a transplant.

-You go to very dark places.

-No-one wants to be ill forever.

-No-one wants to be in and out

-of hospital all the time.

-She asks how much difference

-has the new law made.

-Do you think it's made

-a difference...

-..to you as someone

-who's on the waiting list?

-Waiting list for a heart?

-Waiting list for a heart?

-

-Yes.

-Not at all. Not at all.

-With patients waiting in vain

-for organs every year...

-..Llio asks the health secretary

-about the value of the policy.

-Do you think the policy is failing?

-I don't you can put this down

-to the policy.

-I'm Llio Dudley.

-Two years ago, I had a kidney

-from my sister, Ffion.

-I'm on my way to the clinic

-in Ysbyty Gwynedd.

-It's a specialist kidney clinic.

-It's a journey I take

-every three months...

-..for a check-up

-and to make sure everything's OK.

-Hello, how are you?

-Hello, how are you?

-

-OK, thanks.

-Between April 2014 and 2015,

-Llio was one of 172 people...

-..to receive a transplant in Wales.

-She's fully recovered now...

-..but still remembers the strain

-during the darker times.

-I just felt like I hadn't done most

-things other young people had done.

-I was worried about the future -

-would I be able to have children...

-..would I be able to lead

-a normal life?

-So many things

-were racing through my mind.

-Llio Meleri Dudley?

-She still attends

-regular hospital appointments.

-She will take medication

-for the rest of her life.

-Hello, nice to meet you.

-And you as well. Are you OK?

-How are you?

-Llio was fortunate to receive

-a kidney from her sister.

-She didn't have to stay

-on a waiting list.

-After meeting several people

-who were still on a waiting list...

-..she contacted us to suggest

-a programme on deemed consent.

-Thank you very much.

-Bye now. Thank you.

-She welcomed the new law

-two years ago...

-..and tonight, she tries to discover

-if it's made a difference.

-I hope so. I can't tell you

-for certain if it has.

-That's why making this programme

-will help me find the answers.

-Today, Llio's journey begins...

-..with a visit to see someone

-who's waiting for a kidney.

-Well, it's 7.00am.

-We're on our way to Llandysul.

-We're meeting a man

-who's waiting for two transplants...

-..a kidney and a pancreas.

-I'm looking forward

-to hearing his story...

-..and finding out

-what he's been through...

-..and hearing his views

-on the new law.

-Carwyn Jones is 31 years old.

-He became ill 18 months ago.

-I was ill all the time.

-I kept on going back

-to see my doctor.

-I'd recover but had to go back

-to see the doctor again.

-They discovered that things weren't

-right. My heart was enlarged.

-I had an irregular heartbeat.

-From then on, we realised

-that my kidneys had failed.

-He was rushed to Morriston Hospital

-for treatment...

-..and he discovered

-he needed a kidney transplant.

-He also has diabetes.

-He was told he needed a double

-transplant - kidney and pancreas.

-I was quite depressed about it,

-as anyone would be.

-I worried about recovering.

-Would I be able to carry on?

-Everything goes through your mind.

-Millions of questions

-go through your mind.

-Ten people in Wales are waiting for

-a kidney and pancreas transplant.

-Carwyn isn't strong enough

-to be on the waiting list...

-..and he visits the gym once a week

-to strengthen his body.

-It's turned my life upside-down.

-I used to be physically active.

-Before I returned to the gym,

-I could hardly walk.

-Walking made me tired.

-Visiting the gym helps.

-Carwyn lives in Pontsian

-near Llandysul.

-Llio has called to see him.

-Hello, Carwyn.

-How are you? I'm Llio.

-Nice to meet you. Come in.

-Well, the first thing we should do

-is take our tablets together!

-It's a daily routine.

-Before becoming ill, Carwyn

-used to play rugby at scrum-half...

-..and he ran

-a tyre-changing business in Crymych.

-Llio wants to see how his life

-has changed over the past two years.

-I'll take my coat off

-and then we'll have a chat.

-How has it affected your life?

-You're not working now, are you?

-I tried to carry on, carry on living

-as I was. I wanted to carry on.

-The more time went on, you could

-feel it affecting you even more.

-What seemed to be easy to do before,

-it wasn't easy anymore.

-Walking.

-Out of breath because of the fluids

-building up in the body.

-I can only drink

-a litre of fluid a day.

-A litre?

-That includes everything -

-water, tea, coffee.

-Jelly and ice cream.

-A day?

-Do you find that difficult?

-Do you find that difficult?

-

-It's difficult, it really is.

-You find that friends drift away.

-You hear less from them.

-They can't deal with the facts.

-You can't up and go.

-You can't go out.

-They're still there but they don't

-want to do as much with you...

-..as you used to do.

-It affects everyone.

-Everyone.

-Steve Griffith from Cardiff

-is also waiting for a transplant.

-He's 53 years old

-and a father to two children.

-He's under the care of cardiologists

-in Cardiff and Birmingham.

-I'm on my way to the Heath Hospital

-in Cardiff.

-I'm off to see the doctor.

-I'll see how it goes with him.

-Five years ago,

-he started feeling ill and tired.

-After visiting the doctor,

-he realised he'd had a heart attack.

-I was out of breath. I couldn't

-put my shoes and socks on.

-I went back to see the boy

-in the hospital...

-..and he said,

-"Something's wrong here."

-He said,

-"You're in end stage heart failure."

-I thought, "That sounds great.

-What's end stage?"

-"What it says on the tin.

-End stage is end stage."

-The left side of his heart

-has stopped working.

-An LVAD electrical device...

-..is keeping the blood

-flowing through his body.

-But it doesn't solve the problem.

-I'd like to walk and talk

-at the same time.

-That's difficult.

-This is only going at one pace.

-I can only do certain things.

-It is... It does hinder me slightly.

-I'd rather have it and still be

-alive than not have it.

-The consequences

-of not having it were pretty dire.

-In the past year,

-12 Welsh people received new hearts.

-Steve says he's been waiting

-for years for a transplant.

-If a heart became available now,

-would you accept it?

-Of course I would. Absolutely.

-How do you think

-it would change your life?

-I'd just be relying on not being

-attached to 12 inches of cable...

-..and plugging into the mains

-at night.

-It'll free me up. I could have

-a proper shower and bath.

-I can't do that with this machine.

-It's silly little things,

-silly little things.

-I'm still here

-and that's the main thing.

-After the break,

-Llio meets a nurse...

-..who breaks bad news to relatives

-when loved ones pass away.

-I can look at the register to see

-if someone's made a decision...

-..to opt in or out

-but we have to speak to the family.

-We speak of donating as an option.

-She also asks how effective

-the policy really is.

-The number on the transplant

-waiting list...

-..has increased

-in the last two years.

-Has that got anything to do

-with the policy?

-It's hard to say if it's got

-anything to do with the policy.

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-Glangwili Hospital, Carmarthen.

-Three times a week...

-..Carwyn Jones comes here

-for six hours of dialysis.

-He needs a new kidney

-and pancreas...

-..and the treatment

-manages his condition.

-Another one done.

-Another one done.

-

-Six hours!

-Yes, six hours. I'm tired now.

-I feel weak.

-It has to be done. It's what

-keeps me and lots of people alive.

-Two years ago, Llio Dudley

-had a new kidney from her sister.

-She's on a journey to discover more

-about the deemed consent law.

-She's meeting a specialist nurse

-who discusses organ donation...

-..with bereaved families.

-This opt-in, opt-out business.

-What's your role with that?

-Does it make it easier?

-The doctor speaks to us. He asks us

-to speak with the bereaved families.

-We check the list before we meet.

-We check the register to see

-if someone's made a decision...

-..to opt in or opt out.

-It's a conversation

-with the families.

-We sit down and make sure

-they understand what's happening.

-We give them plenty of time

-to come to terms with the news.

-It's really difficult for them

-to take everything in.

-We speak to them

-about the option of donation.

-I've made a decision

-about organ donation.

-To encourage conversation

-about organ donation...

-..the government released

-this advert.

-Dad, no!

-Last year, the families

-of 21 people in Wales...

-..refused to donate the organs

-of their loved ones...

-..to people on waiting lists.

-None had opted out

-and many had opted in.

-Talk about organ donation.

-Or maybe someone else

-will speak on your behalf.

-As a nurse working in this field,

-Lucy emphasises the importance...

-..of families

-speaking about organ donation.

-It's really important

-to speak to your families...

-..about what you want.

-If they see something on TV...

-..that helps them decide

-to donate organs...

-..it's easier for the family

-to know what they want.

-A very interesting chat

-with Lucy there.

-I must say that I'm still

-not sure what's going on...

-..in terms of...

-Lucy said that she

-and the other specialist nurses...

-..still talk to parents

-and families...

-..even when their loved one

-has opted in or opted out.

-If that person has opted in, why

-are they having the conversation?

-That person has already made

-the decision.

-As she said,

-that conversation is critical...

-..the conversation between

-the family and the potential donor.

-242 people are waiting

-for organ donations in Wales.

-Llio is on her way to the home of

-one of the ten waiting for a heart.

-This afternoon,

-I'm meeting Steven Griffith.

-I'm hoping to discover his attitude

-towards the new policy...

-..and find out if it's made

-any difference to him...

-..since he's on a waiting list

-for a heart transplant.

-Steve has been waiting for

-a transplant for over four years.

-Hello, Steve, how are you?

-Hello, come in.

-He has doubts

-about the value of the new law.

-Has it made a difference to someone

-like you who's on a waiting list?

-For a new heart?

-Yes.

-Yes.

-

-Not at all. Not at all.

-Why not?

-I asked! I asked in Birmingham

-and they said not at all.

-With a heart,

-as I mentioned earlier...

-..someone has to die.

-There's a lot of stigma

-with hearts.

-They told me up in Birmingham that

-when it comes to a transplant...

-..people sometimes

-change their minds.

-"You can have everything else

-but don't take the heart."

-The man's dead and that heart

-can save someone's life.

-Do you think that asking someone's

-wife, husband or parents...

-..do you think it's right

-that nurses and doctors ask them?

-If they've opted in, no.

-They might have lost someone

-that's dear to them.

-It's the wrong time

-to ask a family...

-After losing someone.

-That's what I say, don't do it.

-Respect their wishes.

-True enough.

-That's how I would feel.

-I've just visited Steven. Wow.

-He's a very positive man.

-I admire him greatly.

-As he was saying,

-both of us feel it's so important...

-..that families discuss the subject

-of organ donation after death.

-For someone like Steven

-who's waiting for a heart...

-..it's crucial

-that the family are aware...

-..of the wishes

-of the individual after they die...

-..and whether he or she wants

-to donate their organs.

-39% of people in Wales

-have opted in...

-..and 6% have opted out

-of organ donation.

-Over half the population

-haven't made a decision.

-Health service figures show that the

-waiting list for receiving organs...

-..has increased

-since the new law was introduced.

-At the end of March 2015, 220 people

-were waiting for a transplant.

-Today, 242 are on the waiting list.

-That's an increase of 10%.

-The number of people

-on the transplant waiting list...

-..has increased

-in the last two years.

-Has that got anything to do

-with the policy?

-It's hard to say if it's got

-anything to do with the policy.

-More people have positively

-registered in Wales.

-There's been a rise

-in registrations.

-Some people have registered

-to opt out as well.

-That has to be real

-because part of the concern was...

-..that the state would take over

-and decide for you what to happen.

-Despite a longer waiting list...

-..Vaughan Gething claims

-that changing the law...

-..makes people more aware

-of the importance of organ donation.

-The other thing that's changed

-is the culture around donation.

-That's part of what we want to see

-happen, that donation is expected.

-We have this mismatch between people

-who accept an organ as a donation...

-..and those who say they positively

-give if in a position to do so.

-There's then also the family...

-..and how the family

-support the choices people make.

-That's a barrier

-to donation taking place.

-A longer waiting list isn't

-the only surprising development.

-It appears

-that the deemed consent law...

-..has made little difference...

-..to the number of transplants

-Welsh people receive.

-During the 2013-14 financial year...

-..157 organs were donated

-from the bodies of the deceased.

-During the first year

-after passing the law...

-..this increased to 168.

-Last year, the number was 135,

-a drop of 20%.

-Do you think the policy is failing?

-I don't think you can put it down

-to the policy.

-The first two years were important

-in people understanding the changes.

-Do you think maybe next year or the

-year after, you'll see a difference?

-I hope we see an improvement in the

-number of donations taking place.

-The first two years

-were always going to be difficult.

-Next year, we're focusing

-on that family conversation.

-After five years,

-there'll be a more rounded place.

-Look over the five years

-to see where we are.

-Wales is the only country in the UK

-to introduce deemed consent...

-..but there's no guarantee...

-..that Welsh patients

-are the ones to benefit.

-According to recent figures...

-..76 patients have received organs

-under the new law.

-Only 11 came from Wales.

-After speaking with the minister...

-..Llio is surprised that the law

-hasn't made a greater impact.

-I must say, I'm disappointed

-from my perspective...

-..that two years

-will have passed by December...

-..and we haven't necessarily

-seen a difference up to now.

-We'll have to wait and see...

-..if there is a difference

-in the policy in the coming years.

-At his home in Pontsian,

-Carwyn Jones has received good news.

-Within a fortnight, he will undergo

-tests at Cardiff's Heath Hospital.

-He's hoping to join the ten...

-..on a waiting list

-for a double transplant.

-He has a message for anyone

-who questions the value...

-..of the deemed consent law.

-When it was introduced, I never

-thought I'd be in this position.

-It's a difficult time when you

-lose a family member or friend...

-..but you can save many lives

-and give someone a new life.

-People like me

-and hundreds of other people.

-I urge everyone to speak to

-their families, partners, friends.

-If they could see how much

-it helps people like me...

-..they could see the good it does...

-..when an organ donation is made

-by the deceased.

-Llio Dudley now works

-in Ysgol Eifionydd, Porthmadog.

-Before she received a new kidney

-from her sister in 2015...

-..she also relied on dialysis.

-I felt completely different

-after the transplant.

-I can't describe the difference.

-I can remember how ill I was.

-I live like to the full.

-I wake up in the morning and I

-don't complain because I'm not ill.

-Not everyone

-is as fortunate as Llio.

-On average, two people die

-each month in Wales...

-..while waiting for a transplant.

-By doing this programme...

-..seeing different statistics

-and meeting different people...

-..I've realised that this new law

-has made no difference at all.

-I'm disappointed.

-I expected to see

-an improvement after two years.

-Thank you. Ta-ra.

-At the end of her journey,

-Llio wants to see more done...

-..to ensure that people receive

-organ donations in the future.

-I really hope

-that a change will happen...

-..during the next year,

-over three years...

-..in five years...

-..for those who desperately need

-an organ here in Wales.

-S4C Subtitles by Adnod Cyf.

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