0:00:00 > 0:00:00- 888
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0:00:06 > 0:00:08- 888
0:00:12 > 0:00:14- 888
0:00:18 > 0:00:20- 888
0:00:25 > 0:00:29- We don't like talking about death - - it's a taboo subject.
0:00:29 > 0:00:33- Some people think talking - about death brings about death.
0:00:33 > 0:00:36- However, aren't we all - going to die in the end?
0:00:37 > 0:00:41- My debate is the case for presumed - consent for organ donation.
0:00:41 > 0:00:45- My intention today - is to open the debate in Wales.
0:00:45 > 0:00:49- The Kidney Wales Foundation - is campaigning to change the law.
0:00:49 > 0:00:55- Every day, one patient in the UK - dies while waiting for a transplant.
0:00:55 > 0:01:00- It could happen to your mother, - daughter, father or brother.
0:01:00 > 0:01:04- They gave me two years and - my two years are up in September.
0:01:04 > 0:01:08- I don't listen to a prognosis - or to statistics - I never have.
0:01:09 > 0:01:12- Up to 10,000 people in Wales - have kidney disease...
0:01:12 > 0:01:15- ..potentially leading - to kidney failure.
0:01:15 > 0:01:21- Something must be watching over me - - like a guardian angel.
0:01:24 > 0:01:28- I think it's important for me - to tell my story.
0:01:32 > 0:01:34- Allison John is 30 years old.
0:01:35 > 0:01:39- She's the only woman in Britain - to have had four transplants.
0:01:39 > 0:01:44- She has a new heart, new lungs, - a new kidney and a new liver.
0:01:44 > 0:01:47- As an ambassador for - the Kidney Wales Foundation...
0:01:48 > 0:01:50- ..she wants the law to recognize...
0:01:50 > 0:01:53- ..automatic organ donation - after death.
0:01:56 > 0:02:00- It's an issue about which - Allison feels very strongly.
0:02:04 > 0:02:08- I was born with Cystic Fibrosis.
0:02:09 > 0:02:14- It's an inherited condition, - more common in Caucasians.
0:02:15 > 0:02:20- Both Mam and Dad are carriers - and the lungs are the main problem.
0:02:20 > 0:02:26- A sticky mucus damages - the structure of the lungs...
0:02:26 > 0:02:29- ..and they deteriorate.
0:02:30 > 0:02:34- Many people didn't want me - to attend a normal school.
0:02:34 > 0:02:39- Some members of the family thought - it would be too much for me...
0:02:39 > 0:02:44- ..and that I'd catch colds - from other children.
0:02:44 > 0:02:46- Mam and Dad were determined...
0:02:46 > 0:02:50- ..that I should attend - the same school as my brother...
0:02:50 > 0:02:52- ..and lead a normal life.
0:02:54 > 0:02:58- Allison enjoyed a typical childhood - until the age of seven...
0:02:58 > 0:03:01- ..when her health - began to deteriorate.
0:03:01 > 0:03:04- I was very ill every morning.
0:03:04 > 0:03:08- I was nauseous and vomiting - and I didn't feel well.
0:03:08 > 0:03:14- I went back to the doctors and they - discovered a problem with my liver.
0:03:15 > 0:03:18- By the time - I was seven years old...
0:03:18 > 0:03:24- ..I'd lost about 70% - of the function of my liver.
0:03:24 > 0:03:27- They told me at that stage...
0:03:27 > 0:03:31- ..that I was one of the 10% - of Cystic Fibrosis sufferers...
0:03:32 > 0:03:34- ..who get liver disease.
0:03:35 > 0:03:40- Being a part of the 10% meant the - statistics were stacked against me.
0:03:41 > 0:03:44- Her liver was problematic - throughout her childhood.
0:03:44 > 0:03:50- By her teens, she had no choice - but to have her first transplant.
0:03:50 > 0:03:54- I had my liver transplant - in the nick of time.
0:03:55 > 0:04:00- They said I had between three days - and three weeks left to live.
0:04:05 > 0:04:09- Allison has faced death many times - during her short life.
0:04:10 > 0:04:16- It drives her to be an ambassador - for the Kidney Wales Foundation.
0:04:16 > 0:04:18- The Senedd is her second home.
0:04:18 > 0:04:22- Transplants are a miraculous - achievement in medicine.
0:04:22 > 0:04:25- There is a serious shortage - of organs in the UK.
0:04:25 > 0:04:28- The gap between the number - of organs donated...
0:04:29 > 0:04:31- ..and patients waiting - is increasing.
0:04:32 > 0:04:36- I'm considering presumed consent - to increase organ donations.
0:04:36 > 0:04:39- I recognize - this is a sensitive issue.
0:04:39 > 0:04:43- It must fully involve - the public.
0:04:43 > 0:04:49- It does operate in - 22 other countries around the globe.
0:04:49 > 0:04:54- I've commissioned a consultation - document about presumed consent.
0:04:54 > 0:04:58- I'm also holding a Welsh publicity - campaign in the new year...
0:04:58 > 0:05:02- ..to raise awareness - of the need to register as a donor.
0:05:03 > 0:05:06- Every party agrees - that a public debate is needed...
0:05:07 > 0:05:10- ..on this very sensitive issue.
0:05:12 > 0:05:15- "At last, - support from the Assembly!
0:05:15 > 0:05:18- "The next step - - change the way people think...
0:05:18 > 0:05:24- "..and show them that donating - organs after death is natural."
0:05:28 > 0:05:30- APPLAUSE
0:05:32 > 0:05:33- Good afternoon to you all.
0:05:34 > 0:05:37- We can all say that today - has been very successful.
0:05:37 > 0:05:43- When people learn that after death - one person can save seven lives...
0:05:44 > 0:05:48- ..they tend to think - it's an amazing thing to do.
0:05:48 > 0:05:53- Once they know the facts, - they change their views.
0:05:53 > 0:05:57- It could happen to your mother, - daughter, father or brother.
0:05:57 > 0:06:00- Think hard about the subject - - it's very important.
0:06:00 > 0:06:04- At the moment, - you cannot use a person's organs...
0:06:04 > 0:06:07- ..without their permission.
0:06:07 > 0:06:12- Allison wants this to change so that - every organ is available to use.
0:06:12 > 0:06:17- Many disagree and believe this - is a decision for the individual.
0:06:18 > 0:06:20- Today was very successful.
0:06:20 > 0:06:24- It's extremely important to increase - the number of organs available.
0:06:24 > 0:06:29- Allison's campaign was about - to receive some unexpected support.
0:06:30 > 0:06:33- A possible change in organ donation.
0:06:33 > 0:06:36- Prime Minister Gordon Brown - lends his support.
0:06:38 > 0:06:39- "Woke up today...
0:06:39 > 0:06:43- ..to hear that the Prime Minister - supports automatic organ donation.
0:06:44 > 0:06:48- "Excellent - - but totally unexpected."
0:06:50 > 0:06:52- It's quite a turnaround.
0:06:53 > 0:06:58- In 2004, he said he was not - in favour of presumed consent.
0:06:59 > 0:07:03- He believed it unethical - thinking - presumed consent is no consent.
0:07:04 > 0:07:08- Since that time, his family has - experienced personal problems...
0:07:09 > 0:07:12- ..and he has a child - with Cystic Fibrosis.
0:07:12 > 0:07:15- There's a good chance - that his son...
0:07:16 > 0:07:19- ..will need a transplant - in the future.
0:07:19 > 0:07:23- It can change his views.
0:07:25 > 0:07:28- People can be very ignorant.
0:07:28 > 0:07:33- Unless your family has experienced - the illness, you tend to ignore it.
0:07:34 > 0:07:38- Allison's family has supported her - throughout her battle...
0:07:38 > 0:07:42- ..sharing in her happiness - and sorrow.
0:07:43 > 0:07:46- By her late teens, - Allison was suffering again.
0:07:46 > 0:07:50- She was educated at home - in order to pass her 'A' levels.
0:07:51 > 0:07:54- After a short time at university...
0:07:54 > 0:07:57- ..another transplant - was on the horizon.
0:07:58 > 0:08:02- The doctors prescribed oxygen - 24 hours a day.
0:08:02 > 0:08:05- I was in a wheelchair - and couldn't walk.
0:08:05 > 0:08:09- I was assessed - for a heart and lung transplant.
0:08:09 > 0:08:13- The heart was alright - but ten years ago...
0:08:13 > 0:08:18- ..it was easier to do a - heart and lung transplant together.
0:08:18 > 0:08:24- The doctors said the waiting list - for heart and lungs was a year...
0:08:24 > 0:08:28- ..but I didn't have - a year to live...
0:08:28 > 0:08:32- ..and they were - quite frank about it.
0:08:32 > 0:08:38- I knew something would turn up - and that I'd get this chance.
0:08:39 > 0:08:43- Within six months, - Allison's dreams came true.
0:08:43 > 0:08:48- Aged 19, she had - a heart and lung transplant.
0:08:49 > 0:08:51- It was like - a new lease of life for me.
0:08:52 > 0:08:57- Normality returned to her life - and a bright future lay ahead.
0:08:57 > 0:09:01- Allison's spirit had carried her - through another crisis.
0:09:01 > 0:09:06- It's this spirit that lies behind - the avid ambassador we have today.
0:09:10 > 0:09:12- "It's going well.
0:09:13 > 0:09:17- "I think people want a change - in the law.
0:09:17 > 0:09:19- "Fingers crossed."
0:09:22 > 0:09:24- When a person is ill...
0:09:24 > 0:09:28- ..they don't have the strength - or energy to fight back.
0:09:28 > 0:09:31- My role is to be a voice - for the sick.
0:09:31 > 0:09:33- You did really, really well.
0:09:33 > 0:09:35- You did really, really well.- - Thank you.
0:09:37 > 0:09:41- The Wales Assembly Government - has started online voting...
0:09:41 > 0:09:46- ..to see how many people - want presumed consent as law.
0:09:46 > 0:09:48- The first statement is...
0:09:48 > 0:09:52- "When I die, I would like my organs - to be taken automatically...
0:09:52 > 0:09:55- "..to save - or improve someone's life."
0:09:55 > 0:09:59- Some 73% replied, "yes".
0:09:59 > 0:10:01- It's a very positive outcome...
0:10:01 > 0:10:07- ..that 73% of people - want presumed consent.
0:10:12 > 0:10:14- Hello, nice to meet you.
0:10:14 > 0:10:16- And you. Where are you from?
0:10:16 > 0:10:19- And you. Where are you from?- - Fishguard.
0:10:20 > 0:10:23- Allison's had a heart, lung, - liver and kidney transplant.
0:10:23 > 0:10:25- You've had...?
0:10:25 > 0:10:28- You've had...?- - Yes, in the last ten years.
0:10:29 > 0:10:35- It will change - but we need to introduce it slowly.
0:10:36 > 0:10:39- The government - is gathering evidence...
0:10:39 > 0:10:42- ..to see the views for and against.
0:10:42 > 0:10:45- Public consultations - will follow.
0:10:46 > 0:10:47- I think it will come.
0:10:52 > 0:10:52- .
0:10:55 > 0:10:55- 888
0:10:55 > 0:10:57- 888- - 888
0:10:57 > 0:11:00- "Allison John's Story"
0:11:02 > 0:11:07- Allison John is the only woman - in Britain to have four transplants.
0:11:07 > 0:11:11- She spends a lot of her time - in the media spotlight.
0:11:11 > 0:11:13- To two, on one - cue.
0:11:13 > 0:11:16- Welcome back. - It's National Transplant Week.
0:11:16 > 0:11:21- I became an ambassador - for the Kidney Wales Foundation...
0:11:21 > 0:11:25- ..as I felt my role was to provide - a voice for everyone in Wales.
0:11:26 > 0:11:28- I had the liver first.
0:11:28 > 0:11:33- Only 10% of Cystic Fibrosis - sufferers have liver problems.
0:11:33 > 0:11:37- I've been there - so they trust me...
0:11:37 > 0:11:40- ..and know I'm passionate - about the issue.
0:11:40 > 0:11:46- It was brilliant that I could help - someone after someone helped me.
0:11:46 > 0:11:51- This is how I started and continued - as people encouraged me to do so.
0:11:53 > 0:11:56- People try to make you stumble - over your words.
0:11:57 > 0:12:00- I've appeared - on various radio stations...
0:12:00 > 0:12:06- ..and they try to invoke you - into saying something controversial.
0:12:06 > 0:12:12- George Best has done a lot of damage - to people who donate livers.
0:12:12 > 0:12:15- The man was very irresponsible - in his behaviour.
0:12:15 > 0:12:20- I've been trained to speak - positively about my beliefs...
0:12:21 > 0:12:24- ..in order to convey my message.
0:12:24 > 0:12:28- I'm joined by Allison John, who's - had four major organ transplants.
0:12:28 > 0:12:32- She's an ambassador - for the Kidney Wales Foundation.
0:12:32 > 0:12:36- The aim of the campaign is to tell - everyone to join the register.
0:12:36 > 0:12:40- Secondly, to tell their loved ones - of their wishes.
0:12:40 > 0:12:43- The advert is being launched - on Friday.
0:12:44 > 0:12:50- Many Welsh celebrities - are supporting the campaign.
0:12:50 > 0:12:53- Let's have a look at the advert.
0:12:54 > 0:12:59- Four in every ten families refuse - to donate the organs of loved ones.
0:13:00 > 0:13:03- In the kitchen, I think, - whilst cooking with my wife.
0:13:08 > 0:13:12- "Still waiting for the findings - of the Health Committee...
0:13:12 > 0:13:16- "..about the change in law - for organ donation.
0:13:16 > 0:13:18- "Getting worried."
0:13:21 > 0:13:25- Some people have their own ideas - and it's hard to change their minds.
0:13:25 > 0:13:30- When I do this, it's often - like hitting a brick wall.
0:13:30 > 0:13:35- This was featured in Patient Concern - - a case against presumed consent.
0:13:35 > 0:13:38- "We have presumed consent - for uploading health records.
0:13:39 > 0:13:42- "Now, they push presumed consent - for organ donation."
0:13:42 > 0:13:48- Bodysnatcher says "Presumed consent, - what does that mean exactly?
0:13:48 > 0:13:51- "There is NO consent, the views - of the deceased are unknown.
0:13:52 > 0:13:56- "It's another step down the ID card, - big brother road."
0:13:56 > 0:14:01- Another says "When a state assumes - powers not directly given it...
0:14:02 > 0:14:07- "..by the informed consent of the - governed it's a totalitarian state."
0:14:07 > 0:14:12- There will always be people - opposed to your viewpoint.
0:14:12 > 0:14:17- It can be difficult - to comprehend their views.
0:14:22 > 0:14:25- I went on a hen weekend to Bath.
0:14:26 > 0:14:28- I was out with friends...
0:14:29 > 0:14:32- ..when I realized - that something was wrong.
0:14:34 > 0:14:39- We went straight to hospital and - they told me I had renal failure.
0:14:42 > 0:14:47- It was a massive shock. - I really didn't expect it.
0:14:47 > 0:14:48- Why me again?
0:14:49 > 0:14:51- I've been through so much. - Why this again?
0:14:52 > 0:14:58- Will the rest of my life be spent - on dialysis every other day?
0:14:59 > 0:15:01- My thoughts at the time were...
0:15:01 > 0:15:04- ..that I couldn't face it - on a daily basis.
0:15:04 > 0:15:06- I should just give up now, maybe.
0:15:08 > 0:15:14- Some doctors thought - I'd had my share of chances.
0:15:15 > 0:15:19- I'd already had a liver, - heart and lungs.
0:15:19 > 0:15:24- Maybe I shouldn't have another, - that I'd had all of my chances.
0:15:24 > 0:15:28- They said a kidney transplant - was too high a risk...
0:15:28 > 0:15:33- ..as my lungs couldn't cope - with general anaesthetic.
0:15:33 > 0:15:37- As soon as they said - it was a problem with the kidney...
0:15:37 > 0:15:40- ..Dad said, - "I want to give you my kidney.
0:15:40 > 0:15:46- "I know that I'm fit and healthy. - Test me now."
0:15:47 > 0:15:49- Mam and Dad were farmers...
0:15:49 > 0:15:54- ..and Mam was my main carer - in the family.
0:15:55 > 0:16:01- She looked after me - as Dad was out on the farm.
0:16:02 > 0:16:08- It was important for Dad - to help me get off the dialysis.
0:16:10 > 0:16:12- The family agreed to this step...
0:16:13 > 0:16:16- ..but the experts in Cambridge - were unwilling to go ahead.
0:16:16 > 0:16:19- In their view, - the risk was too high.
0:16:19 > 0:16:25- Allison could die under anaesthetic, - thus wasting a valuable organ.
0:16:27 > 0:16:30- We tried for a second opinion - at Cambridge...
0:16:30 > 0:16:33- ..but they'd made up their minds.
0:16:33 > 0:16:35- They had given up on me.
0:16:35 > 0:16:40- All they could do was send me back - to Cardiff to start dialysis.
0:16:42 > 0:16:47- There's no freedom for someone stuck - on a machine three times a week.
0:16:47 > 0:16:52- They can't go on holiday - they - must stay home and it's tiring.
0:16:52 > 0:16:56- I didn't want - to face that sort of life.
0:16:57 > 0:17:01- I wanted to return to New Zealand - to see my partner's family...
0:17:01 > 0:17:05- ..but the treatment out there - was so expensive...
0:17:06 > 0:17:08- ..that it made the trip impossible.
0:17:08 > 0:17:13- My partner didn't see his family for - 5 years - he wouldn't go without me.
0:17:14 > 0:17:19- A trip to New Zealand was impossible - but there was another option.
0:17:19 > 0:17:23- I wanted to go to Lapland. - There were day trips available.
0:17:24 > 0:17:29- We flew from Bristol - and by midday, I was exhausted.
0:17:29 > 0:17:33- I told my partner, "I can't go on, - I'll have to stay on the bus."
0:17:33 > 0:17:36- He told me, "Jump on my back!
0:17:36 > 0:17:40- "We haven't come to Lapland - for you to stay on a bus!"
0:17:41 > 0:17:47- He carried me around and we met - Father Christmas but it was tough.
0:17:48 > 0:17:51- It was very difficult - for Nathan too.
0:17:51 > 0:17:55- He hadn't experienced - my illness before...
0:17:55 > 0:17:59- ..whereas Mam and Dad - had a lifetime of it.
0:17:59 > 0:18:03- I think he was very brave - through it all...
0:18:03 > 0:18:05- ..and was a huge support.
0:18:06 > 0:18:08- Without him...
0:18:09 > 0:18:14- ..I think I'd wonder - if there was any point in fighting.
0:18:18 > 0:18:24- I read about treatment - given under spinal anaesthetic.
0:18:25 > 0:18:30- It would mean that I was awake - but numb from the chest down.
0:18:30 > 0:18:34- I didn't see a problem in that.
0:18:34 > 0:18:36- I'm a very strong person...
0:18:36 > 0:18:42- ..but some doctors thought it - unethical to put another person...
0:18:42 > 0:18:44- ..such as Dad...
0:18:44 > 0:18:49- ..through an unnecessary operation - in order to save my life.
0:18:49 > 0:18:55- I viewed it as a decision - that we had taken as a family.
0:18:57 > 0:19:01- Allison and the experts - argued for six months.
0:19:01 > 0:19:06- Her stubbornness and perseverance - led to a very important day.
0:19:06 > 0:19:09- 12th December, 2006...
0:19:10 > 0:19:15- ..was the date - that Dad gave me his kidney.
0:19:15 > 0:19:18- I went down, - received the spinal anaesthetic...
0:19:18 > 0:19:24- ..and was listening to my iPod - as they inserted Dad's kidney.
0:19:27 > 0:19:30- The transplant was a success.
0:19:32 > 0:19:33- Some family members...
0:19:34 > 0:19:36- ..were unhappy about Dad...
0:19:36 > 0:19:40- ..having an operation - in order to save my life.
0:19:40 > 0:19:45- They thought a life on dialysis - was alright for me.
0:19:46 > 0:19:48- I looked OK.
0:19:48 > 0:19:52- I tried to look healthy - and wore make-up...
0:19:52 > 0:19:56- ..and was positive all the time.
0:19:57 > 0:20:02- Underneath it all, - I wasn't alright - I was crumbling.
0:20:03 > 0:20:07- I just wanted the sort of life - that my friends enjoyed.
0:20:07 > 0:20:10- People weren't able - to understand that always.
0:20:11 > 0:20:14- It is difficult...
0:20:14 > 0:20:19- ..but it makes one realize - where true support lies.
0:20:23 > 0:20:26- It's important to fight - for something...
0:20:26 > 0:20:28- ..in which - you believe passionately.
0:20:29 > 0:20:32- I wouldn't be here today - if I wasn't a fighter.
0:20:36 > 0:20:38- "Massive disappointment.
0:20:38 > 0:20:43- "The Assembly's Health Committee - has refused to change the law...
0:20:43 > 0:20:46- "..to donate organs automatically."
0:20:48 > 0:20:50- An Assembly committee says - a system...
0:20:51 > 0:20:55- ..which assumes everyone wants to - donate organs after their death...
0:20:56 > 0:20:57- ..should not be introduced.
0:20:58 > 0:21:01- The current scheme involves - signing a register to do so.
0:21:04 > 0:21:05- "Hope again!
0:21:06 > 0:21:07- "Edwina Hart, - Health Minister for WAG...
0:21:08 > 0:21:10- "..disagrees with the committee - and supports us.
0:21:11 > 0:21:12- "The battle continues."
0:21:15 > 0:21:18- I think Edwina Hart - has been very courageous.
0:21:19 > 0:21:24- Courage is needed in every situation - to move forward in life.
0:21:24 > 0:21:27- Allison is not looking back - but looking forward.
0:21:27 > 0:21:31- Yet, she's aware of something - that life can never give her.
0:21:31 > 0:21:36- The medication I take to stop my - body rejecting the donor organs...
0:21:36 > 0:21:39- ..prevents me from having children.
0:21:40 > 0:21:43- I've known this for over ten years - and I accept it.
0:21:43 > 0:21:48- My brother has two great sons - and they come on holiday with me.
0:21:48 > 0:21:52- I'm just enjoying life - at the moment.
0:21:54 > 0:21:59- I'm the first person in Britain - to study medicine...
0:21:59 > 0:22:01- ..having had a transplant.
0:22:01 > 0:22:05- It was quite a fight - but I got there in the end.
0:22:07 > 0:22:11- Doctors were my heroes, - if that makes sense.
0:22:11 > 0:22:15- I would go in feeling ill - and leave feeling better.
0:22:15 > 0:22:21- From a young age, - I knew that I wanted to be a doctor.
0:22:22 > 0:22:27- Sometimes, - there's a need for people...
0:22:28 > 0:22:31- ..to look outside the box - and I think that's important.
0:22:32 > 0:22:36- I hope I can use that mindset - when I'm a doctor.
0:22:36 > 0:22:40- I've had three chances at life.
0:22:41 > 0:22:44- I can't keep asking - for more and more.
0:22:44 > 0:22:49- I'm happy now that I've had, - actually, that I have a good life.
0:22:51 > 0:22:56- I've got so much energy and - strength that I want to do things.
0:22:56 > 0:23:02- Nathan and I went quad biking - - I could never do that on dialysis.
0:23:03 > 0:23:06- I'm just really enjoying life.
0:23:06 > 0:23:12- I'm doing the things I want to do - and living a normal life.
0:23:12 > 0:23:16- That's all I'm asking for - - I'm not asking for much.
0:23:16 > 0:23:20- All I want is everything - that other people have.
0:23:21 > 0:23:26- I've got that now - and I'm very lucky.
0:23:28 > 0:23:30- "Thursday, 19th February, 2009.
0:23:30 > 0:23:34- "My studies in medicine - are going well.
0:23:34 > 0:23:36- "I'm feeling fine...
0:23:36 > 0:23:40- "..and I'm very optimistic - about the future."
0:23:58 > 0:24:00- S4C subtitles by Tinopolis
0:24:01 > 0:24:01- .