Stori Allison

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-We don't like talking about death -

-it's a taboo subject.

-Some people think talking

-about death brings about death.

-However, aren't we all

-going to die in the end?

-My debate is the case for presumed

-consent for organ donation.

-My intention today

-is to open the debate in Wales.

-The Kidney Wales Foundation

-is campaigning to change the law.

-Every day, one patient in the UK

-dies while waiting for a transplant.

-It could happen to your mother,

-daughter, father or brother.

-They gave me two years and

-my two years are up in September.

-I don't listen to a prognosis

-or to statistics - I never have.

-Up to 10,000 people in Wales

-have kidney disease...

-..potentially leading

-to kidney failure.

-Something must be watching over me

-- like a guardian angel.

-I think it's important for me

-to tell my story.

-Allison John is 30 years old.

-She's the only woman in Britain

-to have had four transplants.

-She has a new heart, new lungs,

-a new kidney and a new liver.

-As an ambassador for

-the Kidney Wales Foundation...

-..she wants the law to recognize...

-..automatic organ donation

-after death.

-It's an issue about which

-Allison feels very strongly.

-I was born with Cystic Fibrosis.

-It's an inherited condition,

-more common in Caucasians.

-Both Mam and Dad are carriers

-and the lungs are the main problem.

-A sticky mucus damages

-the structure of the lungs...

-..and they deteriorate.

-Many people didn't want me

-to attend a normal school.

-Some members of the family thought

-it would be too much for me...

-..and that I'd catch colds

-from other children.

-Mam and Dad were determined...

-..that I should attend

-the same school as my brother...

-..and lead a normal life.

-Allison enjoyed a typical childhood

-until the age of seven...

-..when her health

-began to deteriorate.

-I was very ill every morning.

-I was nauseous and vomiting

-and I didn't feel well.

-I went back to the doctors and they

-discovered a problem with my liver.

-By the time

-I was seven years old...

-..I'd lost about 70%

-of the function of my liver.

-They told me at that stage...

-..that I was one of the 10%

-of Cystic Fibrosis sufferers...

-..who get liver disease.

-Being a part of the 10% meant the

-statistics were stacked against me.

-Her liver was problematic

-throughout her childhood.

-By her teens, she had no choice

-but to have her first transplant.

-I had my liver transplant

-in the nick of time.

-They said I had between three days

-and three weeks left to live.

-Allison has faced death many times

-during her short life.

-It drives her to be an ambassador

-for the Kidney Wales Foundation.

-The Senedd is her second home.

-Transplants are a miraculous

-achievement in medicine.

-There is a serious shortage

-of organs in the UK.

-The gap between the number

-of organs donated...

-..and patients waiting

-is increasing.

-I'm considering presumed consent

-to increase organ donations.

-I recognize

-this is a sensitive issue.

-It must fully involve

-the public.

-It does operate in

-22 other countries around the globe.

-I've commissioned a consultation

-document about presumed consent.

-I'm also holding a Welsh publicity

-campaign in the new year...

-..to raise awareness

-of the need to register as a donor.

-Every party agrees

-that a public debate is needed...

-..on this very sensitive issue.

-"At last,

-support from the Assembly!

-"The next step -

-change the way people think...

-"..and show them that donating

-organs after death is natural."

-APPLAUSE

-Good afternoon to you all.

-We can all say that today

-has been very successful.

-When people learn that after death

-one person can save seven lives...

-..they tend to think

-it's an amazing thing to do.

-Once they know the facts,

-they change their views.

-It could happen to your mother,

-daughter, father or brother.

-Think hard about the subject

-- it's very important.

-At the moment,

-you cannot use a person's organs...

-..without their permission.

-Allison wants this to change so that

-every organ is available to use.

-Many disagree and believe this

-is a decision for the individual.

-Today was very successful.

-It's extremely important to increase

-the number of organs available.

-Allison's campaign was about

-to receive some unexpected support.

-A possible change in organ donation.

-Prime Minister Gordon Brown

-lends his support.

-"Woke up today...

-..to hear that the Prime Minister

-supports automatic organ donation.

-"Excellent -

-but totally unexpected."

-It's quite a turnaround.

-In 2004, he said he was not

-in favour of presumed consent.

-He believed it unethical - thinking

-presumed consent is no consent.

-Since that time, his family has

-experienced personal problems...

-..and he has a child

-with Cystic Fibrosis.

-There's a good chance

-that his son...

-..will need a transplant

-in the future.

-It can change his views.

-People can be very ignorant.

-Unless your family has experienced

-the illness, you tend to ignore it.

-Allison's family has supported her

-throughout her battle...

-..sharing in her happiness

-and sorrow.

-By her late teens,

-Allison was suffering again.

-She was educated at home

-in order to pass her 'A' levels.

-After a short time at university...

-..another transplant

-was on the horizon.

-The doctors prescribed oxygen

-24 hours a day.

-I was in a wheelchair

-and couldn't walk.

-I was assessed

-for a heart and lung transplant.

-The heart was alright

-but ten years ago...

-..it was easier to do a

-heart and lung transplant together.

-The doctors said the waiting list

-for heart and lungs was a year...

-..but I didn't have

-a year to live...

-..and they were

-quite frank about it.

-I knew something would turn up

-and that I'd get this chance.

-Within six months,

-Allison's dreams came true.

-Aged 19, she had

-a heart and lung transplant.

-It was like

-a new lease of life for me.

-Normality returned to her life

-and a bright future lay ahead.

-Allison's spirit had carried her

-through another crisis.

-It's this spirit that lies behind

-the avid ambassador we have today.

-"It's going well.

-"I think people want a change

-in the law.

-"Fingers crossed."

-When a person is ill...

-..they don't have the strength

-or energy to fight back.

-My role is to be a voice

-for the sick.

-You did really, really well.

-You did really, really well.

-

-Thank you.

-The Wales Assembly Government

-has started online voting...

-..to see how many people

-want presumed consent as law.

-The first statement is...

-"When I die, I would like my organs

-to be taken automatically...

-"..to save

-or improve someone's life."

-Some 73% replied, "yes".

-It's a very positive outcome...

-..that 73% of people

-want presumed consent.

-Hello, nice to meet you.

-And you. Where are you from?

-And you. Where are you from?

-

-Fishguard.

-Allison's had a heart, lung,

-liver and kidney transplant.

-You've had...?

-You've had...?

-

-Yes, in the last ten years.

-It will change

-but we need to introduce it slowly.

-The government

-is gathering evidence...

-..to see the views for and against.

-Public consultations

-will follow.

-I think it will come.

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-"Allison John's Story"

-Allison John is the only woman

-in Britain to have four transplants.

-She spends a lot of her time

-in the media spotlight.

-To two, on one - cue.

-Welcome back.

-It's National Transplant Week.

-I became an ambassador

-for the Kidney Wales Foundation...

-..as I felt my role was to provide

-a voice for everyone in Wales.

-I had the liver first.

-Only 10% of Cystic Fibrosis

-sufferers have liver problems.

-I've been there

-so they trust me...

-..and know I'm passionate

-about the issue.

-It was brilliant that I could help

-someone after someone helped me.

-This is how I started and continued

-as people encouraged me to do so.

-People try to make you stumble

-over your words.

-I've appeared

-on various radio stations...

-..and they try to invoke you

-into saying something controversial.

-George Best has done a lot of damage

-to people who donate livers.

-The man was very irresponsible

-in his behaviour.

-I've been trained to speak

-positively about my beliefs...

-..in order to convey my message.

-I'm joined by Allison John, who's

-had four major organ transplants.

-She's an ambassador

-for the Kidney Wales Foundation.

-The aim of the campaign is to tell

-everyone to join the register.

-Secondly, to tell their loved ones

-of their wishes.

-The advert is being launched

-on Friday.

-Many Welsh celebrities

-are supporting the campaign.

-Let's have a look at the advert.

-Four in every ten families refuse

-to donate the organs of loved ones.

-In the kitchen, I think,

-whilst cooking with my wife.

-"Still waiting for the findings

-of the Health Committee...

-"..about the change in law

-for organ donation.

-"Getting worried."

-Some people have their own ideas

-and it's hard to change their minds.

-When I do this, it's often

-like hitting a brick wall.

-This was featured in Patient Concern

-- a case against presumed consent.

-"We have presumed consent

-for uploading health records.

-"Now, they push presumed consent

-for organ donation."

-Bodysnatcher says "Presumed consent,

-what does that mean exactly?

-"There is NO consent, the views

-of the deceased are unknown.

-"It's another step down the ID card,

-big brother road."

-Another says "When a state assumes

-powers not directly given it...

-"..by the informed consent of the

-governed it's a totalitarian state."

-There will always be people

-opposed to your viewpoint.

-It can be difficult

-to comprehend their views.

-I went on a hen weekend to Bath.

-I was out with friends...

-..when I realized

-that something was wrong.

-We went straight to hospital and

-they told me I had renal failure.

-It was a massive shock.

-I really didn't expect it.

-Why me again?

-I've been through so much.

-Why this again?

-Will the rest of my life be spent

-on dialysis every other day?

-My thoughts at the time were...

-..that I couldn't face it

-on a daily basis.

-I should just give up now, maybe.

-Some doctors thought

-I'd had my share of chances.

-I'd already had a liver,

-heart and lungs.

-Maybe I shouldn't have another,

-that I'd had all of my chances.

-They said a kidney transplant

-was too high a risk...

-..as my lungs couldn't cope

-with general anaesthetic.

-As soon as they said

-it was a problem with the kidney...

-..Dad said,

-"I want to give you my kidney.

-"I know that I'm fit and healthy.

-Test me now."

-Mam and Dad were farmers...

-..and Mam was my main carer

-in the family.

-She looked after me

-as Dad was out on the farm.

-It was important for Dad

-to help me get off the dialysis.

-The family agreed to this step...

-..but the experts in Cambridge

-were unwilling to go ahead.

-In their view,

-the risk was too high.

-Allison could die under anaesthetic,

-thus wasting a valuable organ.

-We tried for a second opinion

-at Cambridge...

-..but they'd made up their minds.

-They had given up on me.

-All they could do was send me back

-to Cardiff to start dialysis.

-There's no freedom for someone stuck

-on a machine three times a week.

-They can't go on holiday - they

-must stay home and it's tiring.

-I didn't want

-to face that sort of life.

-I wanted to return to New Zealand

-to see my partner's family...

-..but the treatment out there

-was so expensive...

-..that it made the trip impossible.

-My partner didn't see his family for

-5 years - he wouldn't go without me.

-A trip to New Zealand was impossible

-but there was another option.

-I wanted to go to Lapland.

-There were day trips available.

-We flew from Bristol

-and by midday, I was exhausted.

-I told my partner, "I can't go on,

-I'll have to stay on the bus."

-He told me, "Jump on my back!

-"We haven't come to Lapland

-for you to stay on a bus!"

-He carried me around and we met

-Father Christmas but it was tough.

-It was very difficult

-for Nathan too.

-He hadn't experienced

-my illness before...

-..whereas Mam and Dad

-had a lifetime of it.

-I think he was very brave

-through it all...

-..and was a huge support.

-Without him...

-..I think I'd wonder

-if there was any point in fighting.

-I read about treatment

-given under spinal anaesthetic.

-It would mean that I was awake

-but numb from the chest down.

-I didn't see a problem in that.

-I'm a very strong person...

-..but some doctors thought it

-unethical to put another person...

-..such as Dad...

-..through an unnecessary operation

-in order to save my life.

-I viewed it as a decision

-that we had taken as a family.

-Allison and the experts

-argued for six months.

-Her stubbornness and perseverance

-led to a very important day.

-12th December, 2006...

-..was the date

-that Dad gave me his kidney.

-I went down,

-received the spinal anaesthetic...

-..and was listening to my iPod

-as they inserted Dad's kidney.

-The transplant was a success.

-Some family members...

-..were unhappy about Dad...

-..having an operation

-in order to save my life.

-They thought a life on dialysis

-was alright for me.

-I looked OK.

-I tried to look healthy

-and wore make-up...

-..and was positive all the time.

-Underneath it all,

-I wasn't alright - I was crumbling.

-I just wanted the sort of life

-that my friends enjoyed.

-People weren't able

-to understand that always.

-It is difficult...

-..but it makes one realize

-where true support lies.

-It's important to fight

-for something...

-..in which

-you believe passionately.

-I wouldn't be here today

-if I wasn't a fighter.

-"Massive disappointment.

-"The Assembly's Health Committee

-has refused to change the law...

-"..to donate organs automatically."

-An Assembly committee says

-a system...

-..which assumes everyone wants to

-donate organs after their death...

-..should not be introduced.

-The current scheme involves

-signing a register to do so.

-"Hope again!

-"Edwina Hart,

-Health Minister for WAG...

-"..disagrees with the committee

-and supports us.

-"The battle continues."

-I think Edwina Hart

-has been very courageous.

-Courage is needed in every situation

-to move forward in life.

-Allison is not looking back

-but looking forward.

-Yet, she's aware of something

-that life can never give her.

-The medication I take to stop my

-body rejecting the donor organs...

-..prevents me from having children.

-I've known this for over ten years

-and I accept it.

-My brother has two great sons

-and they come on holiday with me.

-I'm just enjoying life

-at the moment.

-I'm the first person in Britain

-to study medicine...

-..having had a transplant.

-It was quite a fight

-but I got there in the end.

-Doctors were my heroes,

-if that makes sense.

-I would go in feeling ill

-and leave feeling better.

-From a young age,

-I knew that I wanted to be a doctor.

-Sometimes,

-there's a need for people...

-..to look outside the box

-and I think that's important.

-I hope I can use that mindset

-when I'm a doctor.

-I've had three chances at life.

-I can't keep asking

-for more and more.

-I'm happy now that I've had,

-actually, that I have a good life.

-I've got so much energy and

-strength that I want to do things.

-Nathan and I went quad biking -

-I could never do that on dialysis.

-I'm just really enjoying life.

-I'm doing the things I want to do

-and living a normal life.

-That's all I'm asking for -

-I'm not asking for much.

-All I want is everything

-that other people have.

-I've got that now

-and I'm very lucky.

-"Thursday, 19th February, 2009.

-"My studies in medicine

-are going well.

-"I'm feeling fine...

-"..and I'm very optimistic

-about the future."

-S4C subtitles by Tinopolis

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