Guest blog by Oli Lewington

Today on the LLTGL blog we're delighted to have Oli Lewington's guest post on the current 4Thought.tv series on compulsory organ donation. Thanks to Oli for his views, we'd love to hear what you think.

The 4Thought Question: Should Organ Donation Be Compulsory?

This week, Channel 4’s 4Thought.tv strand has be focusing on the question of whether or not organ donation should be compulsory.

We’ve heard from Professor John Harris, who believes not only should it, but also that live donors should be “incentivised” to provide their organs (for example, with cash payments); from Derek House, a Jehovah’s Witness who believes that organ donation is fundamentally wrong and shouldn’t be allowed at all; and Colin Prior, who advocates presumed consent (the system that would make people opt-out rather than opt-in to being an organ donor) after losing his 2-year-old son while he waited for a heart transplant.

Tonight, you will hear my views - or as much as can be edited into 90 seconds. For the record, here are the salient points I tried to put across (we’ll have to see how much of it came across in the end!).

GIFT OF LIFE

Firstly – and most forcefully from my perspective and that of many of the lucky recipients of transplant – is the emotional power of the knowledge that you’ve been given the gift of live, with the emphasis on ‘gift’.

I don’t know how it would feel my life wasn’t saved by a conscious choice, but rather the simple fact that my donor never opted out of the system.

FAMILY REFUSAL

Presumed consent removes the need for anyone who supports organ donation to talk to their families about their wishes. When faced with a coordinator asking you whether or not your loved ones organs can be used, how can you be sure of their wishes if you never spoke to them about it? What if you say yes, but they didn’t want that and just never got around to taking themselves of the register, to opting out?

No family in the world in that kind of pressure situation highlighted and exacerbated by grief, pain and loss will agree to donation if there is still doubt. Better to raise awareness as we are and encourage sign-up to the ODR than to risk losing organs because no one talks about it any more.

COLD, HARD FACTS

The Organ Donor Taskforce Report from November 2008 makes two key, fascinating and sobering, points:

Firstly, a switch of system would require an investment of £40million in a campaign to make sure everyone in the country new what was happening. And it does have to be everyone. No falling-through-the-cracks like the digital switchover or similar mass-market campaigns. We all have to know what will happen to our organs if we don’t opt-out.

Secondly, infrastructure: the NHS as it stands simply could not cope with the significant rise in the number of potential donors that a switch to presumed consent would bring. Sad, but true.

So surely the £40million would be better spent on awareness of the Organ Donor Register (ODR) and incremental improvement of the intensive care services, number of donor and transplant coordinators and numbers of surgical teams?

THE FINAL WORD FROM SPAIN

The Spanish organ donation and transplant system is held up - quite rightly - to be the best in the world. The numbers don’t lie.

But too many people draw incorrect conclusions from the fact that Spain has an opt-out system. Mathematicians will tell you there is a vast difference between correlation and causation.

Dr Raphael Matesanz, the pioneer held up as being chiefly responsible for the success of the Spanish system says himself:

"Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate".

That 3 people die every day waiting for an organ is unacceptable.

That I’ve been to the funerals of 5 friends under the age of 24 due to lack of organs is indescribably, unimaginably tragic.

That I was lucky enough to receive a transplant meaning that someone else waiting didn’t get theirs is hard to live with.

But there is more to this argument than simply increasing the size of the potential donor pool. We must see the bigger picture and continue to support the work of organisations like Live Life Then Give Life to sign as many people as possible to the organ donor register.

Oli Lewington is a friend and former founding Trustee of LLTGL. He is a writer, blogger, digital creative and social media specialist, working from his home base in a village near Northampton. In 2007 he received a life-saving double-lung transplant and never a day goes by that he doesn’t think about and thank his donor and their family for their courageous decision at the worst of times. Follow him on Twitter here.

Speakers project training session: 11th June

We have just booked a training session for our Speakers Project, which will take place in the morning of Saturday 11th June in Richmond, Surrey.

Over the years, we have discovered that one method of raising awareness triumphs above all others; telling a real life story. Facts and figures are definitely useful, but to really make people sit up and listen, we need your help.

We are just starting to roll out this exciting new project, the aim of which is to train and support members of the transplant and organ donation community to give talks and presentations. Have you been touched by organ donation in some way? Perhaps you have watched a friend go through the struggles of waiting, maybe a family member became a donor. Are you yourself a transplant recipient? Whatever your link, you could share your story and open people's eyes as to the importance of organ donation.

Come along to our speakers training session, where you will get advice and training on how to maximise the potential of your story. We want to help and support people to share their experiences, and have received extremely positive feedback from those who have attended so far. By sharing your story, you could educate others and encourage people to sign up, and we can help you deliver your story effectively and with confidence.

If you are interested in attending on the 11th June in Richmond, Surrey, please email info[at]lltgl.org.uk. The sessions are completely free, but we have limited places, so please get in touch asap!

We look forward to seeing you there!

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Cystic Fibrosis - a mother's perspective.

This frank and emotive piece is written by Paula Elwood, who is mother to eight year-old Holly, who has CF. Above: Holly is on the left, and her little sister Ruby (who does not have CF) is on the right.

I was at a mother & toddler group when the realisation first struck me. Smiling as we watched our children play, my chatty fellow mums jokingly guessed what their sons and daughters would be when they grew up, who they would marry, what sort of men and women they would grow to be. I said nothing. Not once since my daughter had been born and diagnosed with cystic fibrosis had allowed myself these simple daydreams.

Eight years on and Holly is a smart, beautiful, courageous and sensitive girl, who takes everything in her stride. She loves her dancing, swimming, trampolining and getting up to mischief with her little sister and wide circle of friends. Apart from a couple of major bugs and dozens of minor ones, she’s stayed relatively healthy – and it’s easy to forget she’s not exactly like her friends. But still, I daren’t look into the crystal ball.

Physiotherapy, cocktails of tablets, nebulisers, hospital visits and stays are part of our normal routine and have been since Holly was born. Every year another few tablets are added, perhaps an inhaler, perhaps a few additional tests… As CF is a progressive condition and currently without a cure, it’s probably best not to dwell on the past and the gradual tweaks being made to her care.

Instead I live in the present. Balancing Holly’s routine and the day-to-day demands of life with a ‘pathological’ need to squeeze the most out of every day together, every weekend, every bedtime story – to give my family the most fun possible today, because who knows whether we’ll still be able to do the same tomorrow, next week, next month, next year?

Well-meaning friends have said they admire my lust for life and the non-stop adventures I seem to share with my girls, and some have even been misguided enough to call me ‘brave’. In fact the opposite is true.

We live as we do because of my fear. Fear that Holly won’t have the career, the wedding, or grow into the amazing woman I know she could be. Fear that one day CF will have ravaged her lungs to the point that a transplant is her only option. And fear that if we take that option, she will be one of the hundreds who die waiting every year because of the lack of organ donors.

Instead I hope only that Holly is happy, healthy and has the best possible quality of life for as long as possible, and trust that when the time comes, a heroic stranger will be there to give the greatest gift of all – the gift of life – and a chance to dream of the future.

What is cystic fibrosis?

The Facts:

o Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.

o Cystic Fibrosis affects over 9,000 people in the UK.

o Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.

o People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.

o During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.

o Only half of those living with Cystic Fibrosis are likely to live past their late 30s.

o There is no cure for Cystic Fibrosis.

Symptoms:

Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract. Symptoms of CF can include a troublesome cough, repeated chest infections and poor weight gain. A combination of physiotherapy and medication such as inhalers, nebulizers and antibiotics can help control lung infections and prevent lung damage.

Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, and so people with CF take enzymes to compensate for this problem.

To find out more about Cystic Fibrosis please visit : The CF Trust Website and please keep tuned to this blog to read some personal stories of people living with Cystic Fibrosis.

Cystic Fibrosis Week - 8th - 14th May

Today marks the start of Cystic Fibrosis (CF) Week. CF affects mainly the lungs and the progressive nature of the disease means that people in the end stages of the disease are often referred for transplant. Despite the considerable burden of treatment, people with CF are determined to live their lives to the full. Your support during Cystic Fibrosis Week will help people with CF to live longer and fuller lives.

Money raised during Cystic Fibrosis Week will help the UK charity the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of CF. It will also help them improve the care of people with CF, and will help provide direct support for people with CF and their families.

The Cystic Fibrosis Trust is one of the leading investors in CF research in the world. They fund work to control the symptoms and treat the cause of Cystic Fibrosis. They also fund research into gene therapy to add a healthy copy of the gene to the lungs of those with Cystic Fibrosis. A major clinical trial is hoped to begin later this year involving up to 100 young people with Cystic Fibrosis. This is the first time in the world CF gene therapy has been studied this way.

Find out how you can get more involved in CF week by visiting the website here: http://www.cftrust.org.uk/

Celebrating three years as a registered charity.

Three years ago today, LLTGL became an official registered charity. We have come so far in those three years and in some ways it seems a long time ago, in others, it seems only yesterday. Back in 2008 - our first year as a charity - some of our most memorable moments include our wonderful Jess spreading the word across the country by appearing on Noel's HQ, Nelly, our London advocate at the time, organising her own segment of the world's biggest walk, which Oli and Emily joined her and her family in completing (you can see the video here). That year we also had our very first advocate and trustee away day, and Holly's Battlefront project commenced; a project that would conclude in 2009 with a personal message of congratulations from the PM on the Downing St website! The biggest highlight that year was of course being named "Campaigning Team of the Year" at the Charity Times Awards - we were stunned but extremely proud!

2009 was another very busy year, with Holly's Donor Day capturing the hearts and minds of people all over the country. Team Jac braved gail force winds and icey rain to do the coastal walk and raise over £20,000 for LLTGL in May of that year, and the ever-inspiring Team Ethan joined the fight to raise funds and awareness, which they continue to do to this day, despite their gorgeous little boy loosing his fight just one month after his transplant. When the film My Sister's Keeper came out, Advocate Andrea Evans encouraged people to write to their local cinemas asking them to display donor leaflets in the foyer during the peroid that the film was shown. Andrea also managed to star in the Vodaphone "who would you donate your time to?" advert, getting Organ Donation a wonderful plug on TV! Emily featured in a short awareness film as well that year, entitled "I'd Give You One" after the cheeky LLTGL slogan T-shirt.

Our wonderful Jess was by then extremely ill and in September 2009, a twitter campaign entitled "Save Jess" was launched, which quickly gained attention of news channels and celebrities from across the UK. Following this, Save Jess-tival was swiftly created and took place in October, with the beautiful Natalie Imbruglia spearheading the event, and Jess taking her place as the inspirational and very special guest.

2010 started very sadly, when we lost our lovely Jess on January 12th. All at LLTGL were shaken by this hugely sad loss, but we knew we had to motivate ourselves to continue the fight that Jess had dedicated so much of her time and energy on. That year LLTGL Trustees attended several key talks and conferences, including the BTS conference, and the ETCO conference, where Emily addressed over 500 delegates from all over the globe. Yet more wonderful fundraising events took place, including Ts in the Park who selected LLTGL as the charity to benefit from their event that year. That Christmas, our Tor's Xmas Wish twitter campaign got attention from a variety of celebrities including Philip Schofield, Sarah Brown, and Peter Jones.

As well as these key events, LLTGL continues to regularly run media campaigns, support transplant patients, run educational talks and presentations, give talks as guest speakers at a variety of events, distribute Robyn's Rainbows, and many other things on a day to day basis.

None of the work we have done over the last 3 years would have been possible without the help and support of so many people. From past Trustees who have helped us achieve so much, to volunteers who give up their time and energy to support us in what we do - our charity is strong because of you.

We are excited and optimistic about the next three years, and hoping that they will be even bigger, even brighter, and even more successful.

With love and thanks to all our wonderful supporters,

The LLTGL Trustees

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Welcoming Kirstie as our newest ambassador!

We are delighted to welcome the lovely Kirstie Mills as a new addition to our LLTGL Ambassadorial team.

Kirstie is 21 years old and has just been told she has been accepted onto the waiting list for a double lung transplant.

Kirstie has already started campaigning fiercely and is showing the world that she's a force to be reckoned with! She's doing a fantastic job and we're honoured to have her as part of the LLTGL team.

A quick shout out to our other fabulous ambassadors - Tor and Rachy - who despite lots of health complications and issues, continue to work incredibly hard helping us raise awareness and spread the word about organ donation.

We are extremely proud of our Ambassadors, of their tireless hard work and dedication to the cause, and are so grateful for everything they do for us and for all those waiting.

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Transplant 2013

In 2010, we were asked to participate in the formation of Transplant 2013, a group of patients (and patient organisations), Clinicians and Industry representatives with the following mission statement:

"To promote leadership of organ donation and transplantation in Parliament and other relevant institutions and facilitate communication and consensus within the transplant community in order to support the implementation of the Organ Donation Taskforce’s recommendations, ensure that the target to increase organ donation after death by 50% in 2013 is met, and significantly increase the number of organ transplants."

The inaugural AGM was held in May but the formal launch was on 23rd November in Portculis House, Westminster and trustees Mandy (our representative on this project), vice-chair Matt and Holly all attended.

Transplant 2013 has a wonderful champion in Chris Williamson MP (Shadow Minister for Communities and Local Government) who has been personally affected by organ donation as his wife Lolly sadly died waiting for a single lung transplant 7 years ago. He spoke candidly about his wife, and their struggles as she waited on the transplant waiting list. There were speeches from the President of the British Transplant Society (BTS) Keith Rigg (who is also Chair of Transplant 2013) and the National Clinical Director for Transplantation, the wonderful Chris Rudge.

Excitingly Chris Williamson launched the APPG (All Party Parliamentary Group) on Transplantation on December 15th, and so far has good interest from his fellow MP’s!
As well as LLTGL and a number of MP’s, other groups represented included the various groups participating in Transplant 2013, such as:

• Charities and Clinician Groups included: British Transplant Society; National Kidney Federation; British Liver Trust, Cystic Fibrosis Trust and the British Society for Immunology


• From Industry – Novatis; Astellas, Genzyme and Alexion
  

As well as others we may not have mentioned!

It was a great opportunity for us to talk with people who share our goals and want to see the numbers of transplants being undertaken increased and more people signing the Organ Donor Register. We met up with some old friends too including Lucy Pearson and her Mum.

So watch this space, we will keep you updated on our continuing work with Transplant 2013 and its progress.

Lovely Lou

Do you want the good news first or the bad news?

Well we'll start with the bad, our lovely Louise Lawrence is stepping down as an advocate for us, however the good news is she is taking a sabatical and will be returning in a years time!

The story behind her leaving is an amazing one. Lou works for Thomas Cook and she was flown out to their managers conference in Turkey as a last minute arrangement in December 2010. Unbeknown to her, her Mum and two very close friends and colleagues were flown out the next day in secret…her friend had been planning this for four years and had been waiting until Lou got better!

As Lou was sat enjoying the Gala Night on the final eve her very close friends went on stage and started talking about someone who was about to receive the Roger Flowers CEO Employee of the Year Award. It took her a long time to realize it was her!

Louise went on stage and there were several surprises for her: a VT from her friends, her Mum appearing on stage and she was then told she could have an all expenses paid holiday to anywhere she wants in the world! Amazing!

So Louise is starting a new adventure, we are all so pleased for her and her new role being the Thomas Cook Ambassador for the UK and Ireland

She will be attending many events as a guest of the CEO of Thomas Cook.

Louise says "I hope to achieve many things with my role including involvement with the Thomas Cook Childrens Charity and the Olympics 2012. Being an advocate was such a special role. Having a platform to directly address an issue so close to me and my family was a true honour. Working with a great team who share an ethos was incredible and I've learned so much along the way. I feel like a truly valued member of the LLTGL team and hope to return as an advocate in the future."

We at Live Life Then Give Life wish you lots of love and luck on your new venture and we can't wait to have you back in a years time!

Reflecting on 2010

What a year 2010 has been; full of ups and downs, triumphs and tears. We will be closed over the Christmas period from 24th December 2010 till Monday January 10th 2011. Before we go, we look back and reflect at some of the key moments over the last 12 months.


We started the year with a bit of a rollercoaster, where hearts were uplifted when our gorgeous Jess got her call for Transplant just after Christmas. Sadly, 4 and a half years of waiting meant Jess' body was just not strong enough, and our inspirational girl passed away on 12th January 2010. At this time of year, our thoughts are with the donor family who tried to save her life, and with her family, who will be feeling her absence very much this Christmas.

There are so many awareness-raising opportunities we could talk about, including dozens of talks, stands and presentations. 2010 saw more fantastic work from our advocates and our Ambassadors Rachy and Tor , as well as Trustees attending events such as the BTS congress, British Transplant Games and the ETCO conference to name a few. Our media campaigns have continued to expose millions more people to the subject of organ donation, and we're hugely grateful to all those who helped by sharing their life stories with us this year.

Our fabulous fundraisers were also on top form in 2010! From organising cake bakes to running marathons, from a charity single to an entire music festival - thousands of you across the UK did your bit to help us continue raising awareness and saving lives.

Thanks to organ donors like George and their families, hundreds of people like Rich are getting ready to celebrate their first Christmas with a new lease of life and hope for the future. However due to the shortage of donors in the UK, there are around 1000 families like the Barr family who are now preparing for their first Christmas with someone missing; someone whose life could have been saved by a transplant, but who ran out of time.

We are looking forward to 2011 as it brings with it new opportunities to booster organ donation awareness and raise the profile of transplantation and its ability to transform lives. With your support and hard work from all of us, we can get even more people signed up to the organ donor register, increase the number of transplants that take place, and save even more lives.

Wishing all our supporters a wonderful Christmas, and a happy and healthy 2011.

Love from us all,

The LLTGL Team

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Justgiving Awards 2011

Last year, Emily and Matt were lucky enough to attend the first ever Justgiving awards which were held at the RIBA building in London. They had a wonderful time and met and heard about many inspiring individuals who achieve so much through hard work and determination.

Nominations for the 2011 Awards are now open, and you can take a look here! Justgiving say "They're our way of recognising the outstanding individuals, teams and charities who together have helped to raise over £175m for worthy causes this year."

Do you feel we're doing a good job? Maybe you want to nominate LLTGL for one of the categories! And there aren't just awards to recognise the work of charities, individuals who have made outstanding contributions will be featured too.

There are a variety of categories such as youngest fundraiser and the lifetime achievement award that you could nominate someone you know who you think deserves recognition. Why not take a look at all the categories here: http://www.justgivingawards.com/

LLTGL Away Weekend

On 16th and 17th October, LLTGL held their 2010 away weekend for Trustees and Advocates in Croydon. The rather lovely ASP Events gave us use of their offices for the weekend completely free of charge, which was a huge help!

Representing our Advocate team were Lou, Kirsty, Tori and Jac, the latter three travelling down all the way from Scotland to be there.

The weekend was a huge success and extremely busy, as we tried to cram in as much information, training and brainstorming as possible! It was a wonderful opportunity for the team to get together, to share ideas, facts and information, and just to get to talk face to face - a rare opportunity due to our distribution around the country!

To everyone's delight, our brand new I'd Give You One T-shirts arrived in time for the weekend, and we are thrilled to announce that they are now on sale! You can find out more and order your T-shirt by clicking here. There will also be a Live Life Then Give Life design available shortly.

Kirsty and Matt modelling our new Ts - get yours now!
www.lltgl.org.uk/t-shirts

The week that was...National Transplant Week

It was a while ago we know, but we’ve been so busy we haven’t actually had time to blog about what LLTGL got up to!

As always, our biggest contribution to NTW was our PR campaign. Some of you kindly shared your stories with us, so we could, in turn, get them out to regional and national media outlets to raise awareness about Organ Donation and the wonders a Transplant can bring

We had 10 PR volunteers this year, and with the help of PR consultant Sarah Milne, between them they managed to get their story out to over 8.5 million people. Hits included Victoria Tremlett and Jen Grannell in the Mirror, Victoria Glen and Gerard Falsey in the Glasgow Evening Times, Lucy Spaull in the Richmond and Twickenham Times, and our very own Chairman Emily in Boots Health and Beauty Magazine.

We are hugely grateful to everyone who has shared their story with us at any point in time; statistics are helpful, but hearing a real story, a real example of just how important Organ Donation is, can be so much more powerful. If you would like to help us by sharing your story, please get in touch via the contact page on our website.

To help maximise online awareness, we had an image designed which we hoped a few people would share on their facebook pages and twitter profiles. The concept was far more popular than we could have hoped, and literally hundreds of people had changed their profile pictures to the image (below) by the middle of the week.

Throughout NTW, we were tweeting key facts about organ donation and transplantation. Our fabulous Ambassador Victoria Tremlett worked extremely hard sending tweets to celebrities, and got a fantastic response. Thanks to Tor, the LLTGL tweet team, and other supporters, celebrities promoting NTW included Duncan Bannatyne, Jason Manford, Lorraine Kelly, Sarah Brown, India Knight, Bill Bailey and Sheridan Smith.

The celeb supporters’ combined followers (therefore people who can see their tweets) add up to over 1.8 million, so a fantastic result! Hundreds of you also retweeted our messages (our most popular one was retweeted 167 times), and we are hugely grateful to each and every one of you for helping us spread the word.

A massive thank you to every single person who helped us support National Transplant Week - it was a huge success and really pushed Organ Donation into the spotlight. We're already looking forward to next year!

Four quick and easy steps to support National Transplant Week.

1. Tell as many people as you can about it!
Mention in on Facebook, tweet about it, put it as your signature at the bottom of your emails just for this week....just a few ways of spreading the word.

2. Have a heart to heart with your loved ones.
How many of us have just never quite found the right time to chat to our families about our wishes? Now is the perfect opportunity; it's National Transplant Week so that's a great conversation starter in itself! Check out NHSBT's website for more info and a Heart to Heart meal pack!

3. Copy and repost this blogpost, or direct your friends this way.
You can help us spread the word and reach more people by doing this, so share away!

4. Make sure you have signed the Organ Donor Register!
Haven't got round to it yet? Click here to sign up right now; it only takes two minutes to pledge to leave behind the most important legacy of all; the Gift of Life.

National Transplant Week starts tomorrow!

Tomorrow marks the start of National Transplant Week, and a whole host of awareness-raising activities will be happening throughout the week.

This year's theme is Heart to Heart. NHSBT are encouraging people to "Take the time this week to have one of the most important Heart to Hearts you can have and help us raise awareness of the NHS Organ Donor Register."

You can find out more about NTW, what will be going on round the country, and how you can get involved by clicking here. There's even a pack to help you hold your very own Heart to Heart meal!

For a quick and simple way of showing your support for NTW, you can download LLTGL's specially designed image (at the top of this post) to use as your facebook profile/on your blog/on your twitter page/anywhere else you can think of! Click here to do so.

Are you doing something this week to raise awareness? If so, we'd love to hear about it, so get in touch! Watch this space for news and pictures demonstrating what we get up to. Let's work together to make this the best one yet!

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Some very positive news!

Rich taking his first stroll outside with his new lungs!

You may remember this blog, which was about Rich's lovely email he sent us after receiving a Robyn's Rainbow. Rich was waiting for a double lung transplant (needed due to Cystic Fibrosis) and had been struggling a great deal. He had been in hospital for two months, able to do very little at all, and reliant on a non-invasive ventilator to keep his exhausted lungs going.

You can imagine how delighted we were when we were told that Rich had been called for transplant. That was almost two weeks ago and we are very pleased to report that Rich is progressing incredibly well! He is now out of ICU and settled on the Transplant ward, and on Saturday, took his first walk outside the hospital to breathe in the fresh air with his new lungs!
We're incredibly pleased for Rich and very much hope that his recovery continues in a smooth and positive manner.

50% of people waiting for lungs like Rich die before suitable organs come through, so for every wonderful story like this, there is one with a much sadder ending. This is why we need to keep pushing, keep raising awareness, and keep encouraging people to think about it, talk about it, and do something about it.

Want to help us help more people like Rich? Why not email this blog link to a friend/colleague/family member? If you've been inspired to help save lives after you're gone, click here to sign the Organ Donor Register.

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LLTGL's stance on presumed consent.

Here at LLTGL, the question often arises as to why we are not actively pushing for an opt-out system for organ donation. This is a brief explanation of opt-out and where we stand on the issue.

What is opt-out?
An opt-out, or presumed consent system, presumes that everyone wants to donate their organs unless they have stated otherwise. As it stands at the moment, it is presumed that you do not wish to donate your organs unless you state otherwise (i.e., sign up to the Organ Donor Register). If you have not signed the Organ Donor Register your next of kin would need to be consulted as to what your wishes may have been, should you ever be in a position to be an Organ Donor. Various transplant-related groups are pushing quite strongly for the UK to change its system to one of presumed consent.

What is LLTGL's stance on it?
LLTGL are not currently campaigning to change the UK system to one of presumed consent. This is for a variety of reasons.

At first glance, there is reason to assume that changing to an opt-out system would solve the organ shortage in the UK - though on closer inspection it is much more complex than this. The current Transplantation system in the UK is undergoing a huge overhaul, triggered by the release of the Organ Donor Taskforce report in January 2008. The report identified 14 key points within the system which need attention and reform, and started working on these immediately. One of the key points identified is infrastructure; we do not have the capacity to deal adequately with increased levels of organ donation. It is vital that this key point is one of the first to be rectified, and steps are already underway to improve things. You can read the full report here.

A major concern for us are the myths and misconceptions which surround Organ Donation. Until people are better educated we do not believe that radical changes to the law would be effective as people would still be making decisions based on erroneous information.

One of the leading countries in the world as regards Organ Donation rates (relative to population) is Spain. Spain does have an opt-out system, however Dr Rafael Matesanz, President of the Spanish National Transplant Organisation, states that the legislative shift to presumed consent is not what improved their donor rates:

"During the early 1990s we had a 30% refusal rate, at the moment it's about 15%," Dr Matesanz says. "Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate". (Read the full article here.)

If the UK changed to an opt-out system, it would be called a "soft" system, where despite the premise being that it is assumed the person wanted to donate their organs, the family would be asked whether they would like donation to go ahead. The family refusal rate in this country is currently 40%, and it could be the case that this would rise since the loved one would not have made an active move to join the Organ Donor Register, leaving the family less certain of their wishes.

For all the above reasons, we feel it is important to focus on improving the current system through attention to infrastructure, education, funding and staffing, before considering any radical changes in UK legislation.

Recording of incorrect data on the NHS Organ Donor Register

The stories and reports surrounding the recording of incorrect data on the Organ Donor Register are very confusing. The basic important facts are as follows:

- This error only affects people who registered through the DVLA. All those potentially affected have been identified, and are being contacted by NHSBT. Data from their files will not be used until they have been spoken to and details have been verified.

- The error is not that people have been incorrectly recorded as wanting to donate, rather their specific preferences as to which organs they do and do not want to donate have been incorrectly recorded.

- NHSBT says: “There are a small number of cases, 21 over the past six years, where the person has died and their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual’s preferences.”

We have issued the following statement in response to this story:

LLTGL are reassured that the issue of data being incorrectly recorded on the Organ Donor Register is being thoroughly investigated. This error means that within the 16 million willing registered donors, there are a number that registered through the DVLA, whose specific preferences have been incorrectly recorded. Those potentially affected have been identified and are being contacted, and any donations that have taken place involving affected parties have done so with the family’s explicit consent.

We hope that the public do not let this error, which is now being investigated and rectified, detract from the importance of giving the gift of life. When considering organ donation, it is vital to discuss your wishes with your next of kin, to ensure that they are aware of your exact preferences.

Click here to read the full statement from NHSBT. Click here to download and read the full statement from the Donor Family Network.

The greatest gift of all.

Today, desperately ill Rachael Wakefield got her call for new lungs.

We won't know anything more till tomorrow and the first few days are critical; please keep her in your thoughts.

Of course most importantly, please think about the wonderful family who said yes, and their loved one who signed the Organ Donor Register.

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Please....Live Life Then Give Life.

Do you have three minutes to spare? Listen to Rachael's story to hear just why Organ Donation is so important.

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

Despite being desperately ill and struggling for each breath, Rachael managed to record this piece for her local BBC News.

Please pass this link on, and if you've been inspired by Rachael's determination to keep fighting, click here to sign the Organ Donor Register.

Thank you.

Our thanks to BBC Northwest for allowing us to use this clip.