brain donation should be the default option

Brain Donation: Opt-in or Opt-out?

In today’s Independent there was an article about a new report calling for increased levels of brain donation, and the ability to ignore the requests of family members if a deceased person has already asked to donate their brain.

My Personal Experience of Brain Donation

On 26th December 2012 my father died due to complications connected with Alzheimer’s Disease. Several months before his death he had asked me if there was anything that could be done with his brain. I explained that there were tissue donation programmes which could use his brain to learn more about Alzheimer’s disease which could help with diagnosis, treatment, and perhaps eventually a cure.

His response? “If they can find it, they’re welcome to it!”.

So, not long after his death the wheels were set in motion to have his brain and spinal cord removed, examined and stored for research.

My feelings about this? Pride.

I wasn’t sad, upset, angry or anything else. It just made me immensely proud that my father had made this decision.

Why do brain banks need brain donations?

The scientific and medial community don’t fully understand dementia – whether Alzheimer’s, Parkinsonian, or any other type. We know a lot more than we did 10 years ago, but not enough to truly understand the diseases and get to grips with them in order to find a treatment or cure.

By studying diseased AND normal brains (and comparing the two), researchers can begin to understand and identify the mechanisms which cause disease, why it happens in the first place, and how to stop (or perhaps prevent) it.

The more brains that are studied, the better the chance of finding a treatment or cure that works for everyone.

Emotions running high

I spoke with Petrie Hosken on LBC on 1st June about this, but rather than focusing on the importance of tissue donation – a lot of those who hit out at the suggestion that more brains should be donated tended to be saying “it’s my brain, I should have the right to decide what happens to it”, while in the same breath saying that the feelings of the deceased loved ones had to be taken into account, and must be valued above all others in the minutes, hours and days after a loved one’s death.

You can’t have it both ways.

In my view – there is no way that relatives should have any power to reverse a loved one’s decision about tissue donation – unless they were not of sound mind when they made the choice.

Although one’s gut reaction to taking a loved one’s brain out of their skull after death might be a little unpleasant, if you look past the gut reaction just a little, then surely it makes sense to always opt for brain donation?

By donating brain tissue the deceased is making a positive impact on the world long after they are gone. In fact – if research on that brain tissue ended up improving treatment for a disease like dementia – their donation could end up improving (and perhaps saving) the lives of hundreds of thousands of people – including the friends and relatives they leave behind.

If the brain isn’t donated? Then one of nature’s most incredible objects – one of the most complex and intricate in the known universe – ends up rotting in the ground or being incinerated.

Surely, it’s a no-brainer? (Pun intended).

Status quo bias

So why do we get so upset about this topic? I think it has a lot to do with our outdated “opt-in” tissue donation system.

We grow up in a culture where we can decide to add our names to a list which will allow doctors and scientists to make use of our organs.

We have an 11% consent rate.

If you were born in Austria you would grow up with a different mindset. There they have an “opt-out” system. By default your organs are made available to those in need of transplants etc. but you have the option to opt out of the scheme.

The Austrians have a 99.98% consent rate.

Is that because Austrians are kinder, more thoughtful, and altruistic by nature? Possibly. (It’s not this. Culturally Austria and Germany are similar, but Germany’s opt-in system yields a 12% consent rate!). But the most likely reason is that we humans are inherently lazy.  Most people accept the default option and never bother to take action to change it, unless they feel strongly about it.

The best option here would be implied consent with an option to opt-out. I’ve discussed this before in a post about Jennifer’s Choice.

Brain donation options

If you’d like to sign up for brain donation – then you can contact any one of the UK’s brain banks to find out more, and to sign up. You’ll need to do this until we change our system to an opt-out, rather than an opt-in one!

It doesn’t matter if you die with a healthy or a diseased brain – it will be of use in helping future generations – and potentially your loved ones and friends.

 

focus group

F**K FOCUS GROUPS!

“Oh, we’ve spent a lot of time using focus groups to fully develop this show.”, he said.

“We’ve really made sure that what we’re doing fully engages the target audience.”

I shifted uncomfortably in my seat.

“We asked the kids exactly what they wanted from a TV show, and so we carefully adapted the show to help meet their expectations.”

I tried to mask a huge sigh, but probably failed.

Believe it or not I recently heard all of these statements in a single meeting, and I felt nothing but sadness (and a little splash of anger and frustration too). It got me thinking… Why are we so obsessed with using focus groups? Can focus groups really be the solution to making the best entertainment possible?

The more I think about it (and I’ve thought about it a lot over the last year) the more I realise… Focus groups are used not to improve the quality of the series or film they are producing, but to cover the arses of the executives involved with them.

Now don’t get me wrong. I’m not suggesting for a minute that collaboration and creative input from multiple parties isn’t important feature of the creative process. Far from it in fact – I’d say it’s essential. If you’re a creative and you don’t have anyone around you to call you out on your bullshit, then you are in trouble. But there’s a huge difference between creative collaboration and the creatively sterilising effect of trying to please everyone who might see your creation.

Using a focus group to help plan a creative project is disastrous. And when it comes to using children’s focus groups to develop new television and film projects – I begin to get particularly angry and frustrated.

focus group kids

When you say to a kid: “Do you like this?” you are asking the child for their subjective experience of whether or not they enjoyed something. And that’s interesting and potentially useful. But as soon as you start to ask kids what they would like to see, and what their ideal show would be then you’re staying a dangerous descent down a slippery slope.

The answers you are likely to receive will likely revolve around another show they have already seen. You may not think that’s a problem, but I’m here to tell you that it is a major problem.

If all information derived from focus groups is based on recommendations from members of the public that allow producers to gradually close-in on an average crowd-sourced likeability then what is going to happen? Shows relying on focus groups begin an inevitable decline into mediocrity. With each successive cycle of focus-group-based development we see increasingly mediocre shows, and so on. What a depressing picture this paints.

Let’s step back for a minute and look at some creative masters in a wider context. How about we start with music?

Endless efforts have been made to scientifically study the music of Mozart and Beethoven to quantify and objectively measure what makes their symphonies and concertos such masterpieces. The hope of these exercises is to distill these masterpieces down to their most basic elements. That would allow composers (or even machines, perhaps) to compose new masterpieces using some sort of formula. So have these efforts worked? Of course not – it’s not possible to formulaically create a masterpiece!

The thing that made their masterworks so unique and timeless was the singular creative genius of these men.

Even if it were possible to formulate a way of writing music to challenge the mastery of these men, it would soon be home defunct as the things that truly make them special is the way their compositions stand out in the context of everything else. The colour black seems most black against a white background and vice versa. By making everything special you inadvertently make everything average.

So focus group use in creativity not only stifles creativity, even if it were to achieve its goal of improving a series towards this “best fit” that executives are aiming for, it would inadvertently make the show average. But this part of my argument is pointless… Focus groups don’t help make a winning product.

So what is the real purpose of these groups? In my view, whatever the executives say – the primary use is so that if the show bombs the exec can say- “but the focus groups said…”. It gives them a get out of jail free card. It’s seems as though these focus groups have become a sorry of equivalent to due diligence in finance. As long as you can cover your arse with a paper trail then everything will be fine, and maybe you won’t get fired. Maybe.

We have to wonder about how many shows never made it because of failings at the stage of development involving focus groups. Their lack of effectiveness is so easily hidden. If a show succeeds having had a positive review from focus groups – thank goodness for the focus group. Of it fails then the focus group get out of jail free card is used and the exec makes sure he uses them next time… After all, it gave him an excuse watertight enough that he was able to keep his job despite the failure of his project.

Doctor Who failed miserably at the focus group stage during its 2005 rebirth, and that could have spelled disaster for producer Russell T Davies if he hadn’t managed to conceal the result from BBC executives. I’m fairly sure that all the BBC bosses since then are glad that the focus group results were kept from them.

But there is a more serious reason why focus groups can only be damaging to a creative driven industry like film and television production.

It takes time for new products to be adopted by the public. It generally takes a small passionate group of “sneezers” (people who get excited about something new and start telling everyone they possibly can) to get behind a new product and make it a success. This is down to familiarity and status quo bias amongst the general public – we don’t tend to like “new” and “different” things when they first appear – but once people begin getting excited this initial resistance can soon be broken down. The problem is that a focus group will only enforce these biases. How can genuinely new and exciting products ever reach the market when faced with these hurdles?

And yet despite all the patently obvious failings of using focus groups in developing new film and television – it seems that every creative industry is still obsessed with using these focus groups to drive and steer development of their output.

On a personal note – can you imagine what would have happened if my late father’s ideas had been presented to focus groups? He would have forever been making Andy Pandy and Muffin the Mule type productions. The focus groups would have shown that kids “enjoyed” and “wanted” more of the same – because that’s what they had been exposed to. If focus groups had existed in the late 50s and early 60s then we wouldn’t have shows like Thunderbirds to enjoy now. To produce something truly extraordinary and successful we need someone who is willing to take a risk and produce because they passionately believe in their idea.

Throughout history the best partnerships between creativity and business had been where a person with money gets behind a passionate creative. Dad was very lucky as he had Lew Grade as his patron for many years. But think of composers, artists, and producers who, throughout history, have been able to excel in their fields with the funding they need, given to them by wealthy patrons. Artists as diverse and important as Chrétien de Troyes, Leonardo da Vinci and Michelangelo, William Shakespeare, and Ben Jonson all sought and enjoyed the support of noble or ecclesiastical patrons.

These systems have produced some of the greatest music, art, theatre, television and film in human history. And none of these artists were told by their patrons: “Hang on, before you start your next work – I think we should ask a group of people what they’d like to see from you”.

Can you imagine if their patrons had said:

“Sorry Leo, she’s just not smiling enough. The focus group want to see a big grin on her face.”

or

“Really, Bill? ‘Romeo and Juliet’? The focus group said they didn’t like the name Romeo. They thought ‘Conan’ sounded more heroic.”

The Mona Lisa if developed using a focus group

The Mona Lisa if developed using a focus group

But as long as the corporate obsession with using focus groups to give creativity continues, those corporations will drive themselves creatively and financially bankrupt, and real genuine examples of genius-driven creativity will be harder and harder to find.

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My Favourite Gerry Anderson Pilot Film

Space Police – Star Laws

Over the years Dad came up with lots of project ideas… many of which became incredibly popular. Others didn’t quite make it. Some were just discarded before getting to a scripting stage. Others made it to scripting and storyboarding but were then chucked out. A few made it to pilot film stage and most notably these include the Investigator, The Day After Tomorrow, and Space Police.

I spent many happy hours watching (and re-watching (and re-re-watching)) the pilot for Space Police – which would eventually be transformed and made as Space Precinct almost a decade later.

It felt quite grown-up when I was watching it as a 6, 7 and 8 year old, but it also felt really accessible. The baddies were varied, funny, and only sometimes scary. Shane Rimmer’s voice was strangely reassuring (although I hadn’t yet consciously connected his name or voice with his best-known roll – that of Scott Tracy in Thunderbirds). I found the story really exciting – and despite watching it monthly for 3 years, I never grew tired of it.

So, when going through Dad’s archive after the funeral – I was disappointed not to find any copies of the script. Luckily Ralph Titterton was able to loan me a copy of the script (thanks, Ralph!) and I was finally able to see Dad and Tony Barwick’s intentions for the story. I found the process so fascinating, and enjoyed reading the script so much that I felt I had to share the screenplay with Gerry Anderson fans who might enjoy it.

So – we’ve spent the last couple of months putting the screenplay into a paperback, and also formatting it as an ebook. It was an interesting process, and the fact that I’ve been able to re-read the script several times has been a bonus!

We’re very lucky that Shane Rimmer (who played lead character Chuck Brogan) agreed to write a lovely foreword, and you’ve also got a tiny intro from me jabbering on about how much I loved the pilot film!

Anyway… now, it’s ready for you to enjoy!

Space Police screenplay

You can get it for your Kindle, or for a couple of quid more pick up a copy of the beautifully designed paperback. You can buy the Space Police screenplay from Amazon.

Thanks to Shane & Sheila Rimmer, Peter Jones of Soundhaven, Dave Low of IDO Design and Animation, Donna Bridges, Ralph Titterton, Chris Thompson and everyone else who has helped bring this little project together!

 

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Dementia Friends

Alzheimer’s Society Launches Dementia Friends

Today sees the launch of the Alzheimer’s Society’sDementia Friends” scheme. Dementia Friends is Alzheimer’s Society’s groundbreaking new initiative which will give more people an understanding of dementia and the small things that could make a difference to people living in their community. From today anyone in England can go online and register to become a Dementia Friend.

dementia-friends-helping-hand

Since my involvement with Alzheimer’s Society started, and throughout the time working with Dad to promote awareness and raise money, I’ve noticed something rather startling. Very few people have any significant knowledge about dementia or about how to deal with people with dementia. Bearing in mind 1 in 3 people over 65 and 1 in 2 people over 80 will die with dementia – it’s something that is going to affect us all eventually – whether we get the disease ourselves, or have a grandparent, parent, spouse or partner that is affected.

Combine this startling lack of knowledge with the stigma currently attached to dementia and we have a very naive population that are not ready for the massive increase in numbers of people suffering from the disease – there are already an estimated 800,000 in the UK, rising to around 1.7 million by 2050.

Over the last few months, I’ve had many friends, colleagues, acquaintances and even strangers contact me to ask for advice. Now, I’m not a doctor, or a dementia specialist… and I think this is the key point. I’m just someone with experience of living with and caring for someone with dementia, and how to cope with it. This suggests to me that people prefer talking to someone on a non-professional basis – and this can open the way to getting a diagnosis, help and treatment for the person they are worried about.

But there’s much more to Dementia Friends than this. Knowing how and when to help someone with dementia can be tough – but having dementia friends within the community will mean that there’s always someone around who can help… whether it’s helping someone find the right bus, or making sure local businesses are dementia-aware. Dementia Friends know how to act more sympathetically towards people with dementia in their communities and workplaces, and will undertake to turn that understanding into action to help people with dementia feel included in their communities.

I’m really looking forward to helping promote the initiative and to becoming a Dementia Friends champion myself in due course.

For more information see the Dementia Friends website.

Jamie Anderson carrying Gerry Anderson's cffin

My Eulogy for Gerry Anderson, My Dad

If anyone wanted to read or re-read the my eulogy for Gerry Anderson, my Dad at his funeral – I’ve transcribed it here:

Jamie Anderson carrying Gerry Anderson's cffin“I’d like to start by reading you a reference that was written by Dad’s first ever employer – “Lewis’ Photos of Regent Street”. It was written in December 1944 when Dad was just 15.

“Mr G A Anderson was in the employ of this Company for about six months.

During that time he has shown himself to be honest and reliable, persevering, and always anxious to oblige.

He is leaving the company to better his position, and carries with him the good wishes of all”.

I think you’ll all agree that he went on to better his position – making a huge impact on the lives of millions, and leaving a phenomenal legacy behind him.

His RAF Certificate of Service and Release from 1949 stated:

“Corporal Anderson has been employed as a Radio Telephone Operator during his service in the Royal Air Force. He has proved to be a very capable NCO and RTO, and can be recommended to any employer as industrious and trustworthy”.

I think these documents go to show that: as you age, you don’t change. You just become more so.

Dad always told me that something wonderful happens when you die: You suddenly become a brilliant, amazing person, and nobody says a bad word about you. But he would be the first to admit that he made a lot of mistakes in his life.

So, I’m not going to talk to you about Dad’s television and film achievements, or go through a list of qualities he had. Instead, rather than talking to you about Gerry Anderson the TV producer; I’d like to share with you a few things about my dad.

My dad was not a great one for public recognition, but did enjoy the occasions on which he was recognised by fans of his work. In the early 1990s he was in London at some serviced apartments for a meeting. The caretaker who let him in instantly recognised him and said “Oh! Could I possibly have your autograph please” handing him a pad. Dad gleefully signed his name, and handed back the pad. Confused, and tiliting the pad from side to side, the caretaker said: “What’s this supposed to say? It doesn’t look anything like Donald Pleasance!”. Dejected, Dad proceeded to his meeting.

He loved keeping up with the latest gadgets. He was one of the first people in the UK to buy a VCR from Japan – the Philips N1500 in 1975. The guys at the sorting office had never seen one before, and so it never made it to Dad’s home. Being only a few years after the Post Office tower bombing: It was destroyed in a controlled explosion by the bomb squad! He was just too avant garde for some people.

My dad was amazing at creating drama. Not just in his productions, but in real life too. My brother, sisters and I all remember being told of the dangers of: riding bicycles, playing rugby, driving… even eating and drinking. He would tell us gruesome (but mostly made up) stories illustrating graphically how we might end up injured or worse if we took part in these activities. Terrifying images that stayed with us throughout our lives. But at the heart of it was a deep-seated anxiety to keep us safe and well.

He was once almost arrested at Edinburgh airport as he emerged from the ladies toilets to the sound of several startled women screaming. We all had to hide for a couple of hours afterwards to avoid detection.

My dad once made Thai fish soup with a very special ingredient: anti-fungal skin scrub that was intended for the dog. He insisted on eating a portion of the disgusting concoction before realising his mistake and phoning the vet for advice on how much damage it would do him. This led to our very kind vet adding a message to all future bottles of the shampoo: “Not to be used as an ingredient for soup”.

Finally he decided he would forgo the social stigma and embarrassment of people knowing he had Alzheimer’s disease, and became an ambassador for the Alzheimer’s Society – helping them raise over £1 million in the process. And it’s this that I’m most proud of him for; beyond all of his amazing television and film achievements.

Dad was very lucky to have some very special people in his life to help him along the journey. To those he worked with – what great teams you made, and what fantastic creations you shaped. To those who stuck by him as his Alzheimer’s progressed, and helped him make the most of his last months – thank you; you’ll never know quite how grateful he was. And to Mum – kinder and more caring than I thought humanly possible, Dad could barely express to me his gratitude for everything you did for him, and how lucky he felt to have you in his life.

Thank you everyone for coming to say goodbye to my dad.”

 

Please feel free to re-use sections of this, but please credit me, and this website.

Estimating my Azheimer’s Disease Risk

estimating alzheimers disease risk genetic testing

Estimating Alzheimers disease risk: Testing my genes

Sadly, as many of you will know; my father passed away from complications relating to Alzheimer’s Disease and vascular dementia (mixed dementia) just a few days ago. He had been campaigning to raise awareness and funding for the Alzheimer’s Society for around a year, and was very keen that I should continue his work.

Dad made no bones about the fact that suffering from Alzheimer’s Disease was one of the worst times of his life. He lost his driving license, his independence, his creativity, his memory, his identity and eventually his life to the disease. I think you’ll agree that’s a pretty terrible way to go. And that doesn’t even cover the half of it. Hallucinations, paranoia, emotional, and angry outbursts are some additional things you might experience, or observe, but of course as the sufferer – you can’t always see that it’s the disease that’s causing these changes. In fact, to you, you feel like the only sane one; like the World is caving in around you and nobody else can see it. But you’re normal, you’re sane… you haven’t lost your mind. At least that’s your experience as the person suffering from the disease.

Alzheimer’s disease is 60-80% heritable, or so geneticists estimate. That means that your chance of developing Alzheimer’s disease is around 60-80% down to your inherited genetics. So, as my father has recently died from the disease it’s at the forefront of my mind that I may well be carrying the genes that predispose me to, or may even cause, development of Alzheimer’s disease in my later years. Perhaps this is a selfish way to look at it. But, I’m a scientist at heart so it’s certainly of great interest to me. The personal connection just makes it more real.

So, I’m getting genotyped. By this, I mean I’m sending off a saliva sample to 23andme in order for them to characterise my genes. Part of this process will involve the geneticists looking at a range of my genes that may (or may not) predispose me to getting Alzheimer’s disease (as well as a range of other diseases including cancers and diabetes). In 2-3 weeks I’ll have my results which will tell me if I have any genes that specifically raise my chance of getting Alzheimer’s.

So what if my results come back positive; that is that I have a genetic makeup that gives me a very high (or at least an above average chance) of developing the disease. Well, this will have been the case whether I know it or not, but then I will be armed with the knowledge. And is knowledge power in these cases? I really do believe it is, and that it will become more powerful as science progresses. I certainly am not a believer in the “what you don’t know can’t hurt you” doctrine. Quite the opposite in fact.

New data about using diet, supplements, exercise, pharmaceuticals etc. to reduce the risk of developing AD is being published all the time, and knowing what I will know, I can make the informed decisions as to whether I will incorporate these decisions into my day-to-day life. If my risk is increased, then I can increase monitoring efforts, inform my GP that I am at higher risk, and be more ready if cognitive changes do start to occur.

I’ll update you in a few weeks when I get my results back. Then I will know. And knowing is half the battle.

Gerry Anderson

A thank you

Gerry Anderson

Gerry Anderson

I just wanted to write a quick note to thank everyone who has been kind enough to get in touch with us over the last 24 hours. We’ve received hundreds of e-mails, read through thousands of tweets, and receives many dozens of phone calls. Dad would have been utterly astonished by the response of the public and the media.

The most overwhelming thing has been the fact that so many people have been so touched by Dad’s work. Not just in terms of entertainment during their childhoods, but into adulthood – altering career paths and generating new interests, that might not have otherwise existed. This depth of influence has been incredibly striking for us, and as a family we truly appreciate the time you have all taken to contact us and share your thoughts, memories, and experiences.

We intend to keep Dad’s memory and legacy going as much as possible, and I will be writing about a number of upcoming projects in the near future.

In the meantime, if you would like to honour his memory then please continue to give donations to the Alzheimer’s Society via our memorial Just Giving page at http://www.justgiving.com/RememberingGerryAnderson

Thank you again for your continuing support and kind messages – they really do mean a huge amount to us.

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Gerry Anderson has Died

Gerry and Jamie Anderson working with the Alzheimer's Society to launch Memory WalkI’m very sad to announce the death of my father, Thunderbirds creator, Gerry Anderson. He died peacefully in his sleep at midday today (26th December 2012), having suffered with mixed dementia for the past few years. He was 83.

Please make donations in his memory to the Alzheimer’s Society via this just giving linkhttp://www.justgiving.com/RememberingGerryAnderson

Below is an obituary kindly written by his fan club: Fanderson

Gerry Anderson has died

26th December 2012

Gerry Anderson, known the world over as the film and television producer of Thunderbirds, Captain Scarlet and Space:1999 amongst many others, has died at the age of 83.

On hearing the news the chairman of Fanderson Nick Williams paid tribute to him:
“To those who met him Gerry was a quiet, unassuming but determined man. His desire to make the best films he could drove him and his talented teams to innovate, take risks, and do everything necessary to produce quite inspirational works. Gerry’s legacy is that he inspired so many people and continues to bring so much joy to so many millions of people around the world.”

Anderson’s unique style of filmmaking influenced the imaginations and careers of countless creatives that succeeded him, and his productions continue to be shown around the world to new generations of fans.

Gerry was diagnosed with mixed dementia two years ago and his condition worsened quite dramatically over the past six months. Having already decided with his family on a care home for himself earlier this year, he moved in there in October.

Until very recently Anderson remained interested and involved in the film industry, keen to re-visit some of his earlier successes using the latest technology available. His last producer credit came in 2005 on New Captain Scarlet, a CGI-animated re-imagining of his 1967 Supermarionation series, which premiered on ITV in the UK. Most recently he worked as a consultant on a Hollywood remake of his 1969 series UFO, directed by Matthew Gratzner.

He also worked as a celebrity ambassador for The Alzheimer’s Society, helping to raise awareness of the disease and much-needed funds for the society.

Gerry leaves three children from former marriages, Joy, Linda and Gerry Junior, his son Jamie and widow Mary.

Fanderson will pay a full tribute to Gerry Anderson in FAB 74, due in March 2013.

Donations can be made to the Alzheimer’s Society in his memory.

Added at 7.14pm 26/12/12 – I just wanted to thank everyone for their incredibly kind messages of support, and for sharing their happy childhood memories – inspired by Dad’s work. I know Dad would have been blown away by the support, positivity, and kind words. I think the saddest thing would have been if he had passed without being noticed, but the response has been the total opposite. Thank you.

UPDATE: 27/03/2013 – A new website has been launched to celebrate Gerry Anderson’s legacy, and keep fans informed about new Gerry Anderson projects. Please visit the Gerry Anderson website.

alan watts

Alan Watts on Life and Music

Alan Watts Life and Music

Alan Watts was a fascinating 20th Century philosopher who brought Eastern philosophy to the West. He has recently enjoyed a resurgence through a few video clips on YouTube. I’ve recently come across a number of these with animations by Matt Stone and Trey Parker (of South Park fame), and have started uploading them so that more people can see them. I’ve also transcribed this video below in case you wanted to read the content separately.

In music one doesn’t make the end of a composition the point of the composition.  If that were so the best conductors would be those who played fastest, and there would be composers who wrote only finales. People would go to concerts just to hear one crashing chord; because that’s the end!

But we don’t see that as something brought by our education into our every day conduct. We’ve got a system of schooling that gives a completely different impression. It’s all graded. And what we do is we put the child into the corridor of this grade system with a kind of “come on kitty kitty kitty”, and now you go to kindergarten. And that’s a great thing because when you finish that you get into first grade, and then come on; first grade leads to second grade and so on, and then you get out of grade school. Now you’re going to go to high school, and it’s revving up – the thing is coming. Then you’ve got to go to college, and by Jove then you get into graduate school and when you’re through with graduate school you go out and join the World!

And then you get into some racket where you’re selling insurance. And they’ve got that quota to make, and you’re gonna make that. And all the time that thing is coming. It’s coming, it’s coming! That great thing, the success you’re working for. Then when you wake up one day at about 40 years old you say “My God! I’ve arrived! I’m there”. And you don’t feel very different from what you always felt.

And there’s a slight let down because you feel there’s a hoax. And there was a hoax. A dreadful hoax. They made you miss everything. We thought of life by analogy with a journey, with a pilgrimage which had a serious purpose at the end and the thing was to get to that end. Success or whatever it is, or maybe heaven after you’re dead.

But we missed the point the whole way along. It was a musical thing and we were supposed to sing or to dance while the music was being played.

Jennifer’s Choice: Increasing Organ Donation Rates

organ donation promotionI was touched this evening to see a new fan page on Facebook – Jennifer’s Choice. I’ve posted details of Jennifer’s story below:

Jennifer was born on 12th June 1985 with Cystic Fibrosis. The symptoms of the disease meant she would have a life that would last no longer than her late teens. As a child Jennifer was happy, bright and optimistic. She became an exceptional student and went on to complete a University degree, along with an MA. She always had an unfaltering fighting spirit and with the advent of improved medication, her life expectancy was extended.
But as predicted, her condition deteriorated and in October 2009 she was registered on the lung transplant list. After an 18 month wait, she received a double lung transplant. With much relief it was a great success and Jennifer felt she had been gifted a second chance. In the autumn of 2011 she was able to enjoy a very special day, when she married David, her boyfriend of 4 years.

But less than a year after the operation, the newly married couple’s hopes were shattered when Jennifer was diagnosed with lung cancer. She was told at this time that her donor was a middle-aged person, who smoked 20 cigarettes a day. By the time of diagnosis, the cancer had already spread through her body.

Jennifer maintained her fighting spirit throughout but inevitably, at 9pm Friday 24th August 2012, at home with her family by her side, Jennifer sadly passed away, aged 27.

Jennifer’s fighting spirit lives on and it has inspired us to create a positive and significant change. There is a real shortage of organ donors, 90% of people have already expressed their support for organ donation, but only 29% have registered. Doctors are having to use organs which carry an even higher risk in order to give those in desperate need of a transplant a chance. In the three year period from 1 April 2009 to 31 March 2012, 39% of lung transplants were from donors with a past history of smoking.

 

Our aim is to ensure those waiting for a transplant are informed of all factors which present a higher risk to their health and to make people in good health aware of what a wonderful thing it is to help save someone’s life and give your organs a second life. Think how amazing it would be for your lungs to enable someone to breathe or your eyes to allow someone to see again. Think how incredible it would be to allow someone to live.

I did not know Jennifer, although she was a close friend of a close friend of mine, so I have no direct connection to the campaign. However, the story struck me as so terribly sad – that a young woman should survive so much, only to be brought down by something which was not her fault. This may well be the nature of life, but this sort of situation is preventable.

If more organs were donated in the UK, then this would have been far less likely to happen as Doctors would have the choice to reject lungs from smokers, or other organs potentially damaged by the donor’s lifestyle. However, in the UK right now we have an “opt in” system. That means that the default setting is NOT to donate organs. In my view, this is such a foolish system… we know from endless psychology and behavioural economics research that the vast majority of people are too lazy to change from the default – whatever that is. Hence why we end up with magazine subscriptions we don’t want for years and years, after signing up for “3 free issues”.

In countries where an “opt out” system is used for organ donation – compliance is often near 100%. For example: Germany has an opt-in system – 12% donate organs. Austria has an opt-out system – 98% donate organs. And that comparison is a useful one, I think – not like comparing apples and oranges. Germany and Austria are similar in many ways including socio-economically.

I hope that campaigns like Jennifer’s Choice will start to build momentum and put pressure on the government to implement an opt-out system, where the default is that it is assumed that every person will donate their organs should they meet with an untimely death. I mean, what use is it for your organs to be incinerated or in a ditch, rather than potentially sustaining life for another human being. What a beautiful gift to give – far more than any amount of money and possessions left in a will could ever be!

So, please head over and join the page on Facebook – follow the campaigns progress, and help bring about an opt-out system for organ donation in the UK!