Support for Donation : Transplantation : Conversation

"Organ donation is very special to the families of organ donors. To those receiving donations through transplantation, it is astonishing. This book allows us to see, in a special way, the reality of what donation means to those affected and their families. Donation and Transplantation is a branch of medicine where the numbers, the statistics, the plans and the bits of paper are all very important but behind every single statistic or number there are people. Their stories are extraordinary and unique. To have these accounts and photographs together in this collection - to hear and to see the stories of people who have been through these journeys - is significant. It's important to me because these are the stories of the people whom I may never meet, yet they are the reason I am doing my job. When I read what they've been through, what they've faced to get where they are today, I am reminded that they are very special people - all of them."

               Chris Rudge, National Clinical Director for Transplantation

"This book is excellent for organisations, such as the Transplant Trust, whose aim is to raise awareness about transplant issues. Kim has collected honest accounts about how it feels to be someone in need of an organ to survive and this book will help people to understand this situation better; they will be more likely to join the Organ Donor Register after reading these experiences. We desperately need more donors - which means that what Kim has done will help save people's lives."

               Cim Bartlett, Kidney Recipient

"Donation:Transplantation:Conversation is very interesting because all the literature that we currently have in the unit and hospital is created internally, by the NHS and it comes from a medical perspective. Although there's been patient involvement in terms of developing our new literature, it's still written and commissioned by us. Kim's book is something different, which will help patients, recipients and their families by offering an alternative to the publications we currently provide."

               Magnus Roseke, Live Donor Co-ordinator

"A much-needed and honest account."

                The Transplant Trust

 

Comments Made in the Scottish Parliament Debating Chamber - 1 November 2012

  

Kenneth Gibson (Cunninghame North) (SNP):I thank the 43 members, many of whom will speak this afternoon, who signed the motion that has brought the debate to the chamber. I also thank the British Medical Association for its comprehensive briefing;Kim Karam for her well-researched book, “Donation: Transplantation: Conversation”; and The Sunday Timesand theEvening Timesfor their on-going campaigns. I look forward to a constructive debate and I hope that we will make progress today to save lives and reduce suffering for hundreds of Scots each year.

Every year, about 600 to 700 people in Scotland require an organ transplant. Last year, 550 patients received a transplant, and 197 had their sight restored by a cornea transplant. People are encouraged to sign up as organ donors but, although 90 per cent of Scots support organ donation, only 30 per cent are registered donors.

Further, as has been pointed out through the on-going respect my dying wish campaign, the potential for 15 per cent of organs to be donated is lost because some families—usually while they are, understandably, very distressed—do not uphold the wishes of deceased relatives who were registered organ donors. Many families subsequently regret that, often only a day or two later.

 

Liam McArthur (Orkney Islands) (LD):It is not often that it can be said, particularly at this time on a Thursday, that Parliament is showing itself at its best, but that has very much been the case in this debate. I join other members in congratulating Kenny Gibson on a compelling speech, and on pursuing the motion with great tenacity, as he does all his motions. I congratulate him on securing the debate.

The motion notes with regret

“the tragic death of 43 people in Scotland last year while awaiting an organ transplant”.

It is probably worth putting on record the gratitude of everybody in this chamber for the work done by medical professionals and others, most important those who make the difficult and selfless decision to donate organs and, indeed, their families. That has resulted in 266 organs being retrieved from 81 deceased donors in Scotland in the past year, and 59 living donors donating one of their kidneys.

I thank the BMA and the other organisations for a detailed and cogent briefing for the debate. Like Kenny Gibson, I thank Kim Karam, who not only is an authority on the issue but acts as a research assistant to my colleague Tavish Scott. I commend her book, “Donation: Transplantation: Conversation”, to all members, not least because its purchase secures a £5 donation to my Movember campaign in aid of prostate cancer*, but also because it is one of the most comprehensive and authoritative books on the issue.

Kim Karam refers to an emotionally complex journey. In this instance, she is talking about the journey that is made by somebody who is going through the process of deciding whether to offer their organs for transplant and those who are in receipt of those organs. However, I think that the phrase also alludes to the challenge that faces legislators. The issue is not just about a legal change. Many members have made that point and Jackson Carlaw made an interesting and persuasive counter-argument in that regard. This is not just about a change in the law; there is a great deal that we need to do around that, not least to stimulate the public debate that, hopefully, this debate forms a part of, but also to raise public awareness and ensure that people debate these difficult, complex and sensitive issues far more thoroughly.

In that sense, I agree with Malcolm Chisholm that the NHS Greater Glasgow and Clyde campaign addresses one aspect that is a shortcoming in the law as it currently stands, which involves peoples wishes not appearing to be respected as often as they should be. The use of social media recognises the need to stimulate the debate as widely as possible. Likewise, theEvening Newsis to be commended for its opt for life campaign.

However, aside from the petitions and articles that the campaigns have involved, the important element is the stimulation of the debate. Every member has referred to the widespread public support for organ donation in Scotland and the disconnect between that and the lesser number of people who sign up to the organ donor register. Roderick Campbell rightly pointed out that, in a UK context, Scotland is performing relatively well but, in an international context, we have a great deal to learn.

There are complexities and sensitivities around the issue, as others have said. Any system of presumed consent has to continue to involve the families. It is a leap too far to try to exclude them at this stage. Dennis Robertson, in yet another emotional and powerful speech, set out some of the reasons why that is the case. Children and vulnerable adults fall into the category that we are concerned about. However, we will still have an active decision that must be made.

As Kim Karam has pointed out, discussions about opt-out and opt-in systems should not distract us from discussing the complex issues of organ donation as a whole. The Spanish system works better not because it is an opt-out system but for a range of reasons, including media support, better education, public acceptance of donation as the normal expectation after brainstem death, better infrastructure and having co-ordinators spend longer with families to talk through the process and expectations.

*(Note: When Mr McArthur offered to pay for my book I asked him to put the money towards his charity work instead)

 

 

Comments Resulting from the Exhibition and Book Launch

 

....Can I congratulate you on your achievement of completing you piece for exhibition. I have heard reports that it is 'fantastic'. 

Also, can I take this opportunity to thank you for choosing the subject of Organ Donation. Highlighting the importance of Organ Donation through media and images accessible to the general population really has a massive impact and saves lives. Since last year the number of people now on the Organ Donor Register has increased by 1 million. This is greatly due to media exposure just like your book.

Well done again,

Brian Tierney 

(Transplant Co-ordinator)

 

 

(In Comments Book) Kim,

The whole transplant community will thank you for this exceptional book that goes a long way in filling the gap in literature aimed at unravelling the mystery o donation and transplantation for the lay individual and many health professionals. Your dedication and clearly inspired approach is only too clear and you should be, and are, congratulated on this outstanding contribution. I hope this is just the beginning of a long and remarkable career and I wish you all the very best for your continued success in your chosen field of photojournalism.

(and via Email) Dear Kim,

I was so glad I was able to come along and meet with you again and see your exhibition, plus be witness to the wonderful work you have done with the book. I have shared it with colleagues and from their perspectives it is ideal for undergraduate students, school children and lay public. They really liked the magazine style layout, which they thought most useful for these groups and those that may wish to 'dip in'. So, I would encourage you to complete the project, as there will, as you know, be a real call for material like this to help support the ideals and educational drive of the Taskforce recommendations. I will send you my comments re my interview but I don't think there is a lot I would like to change. Should you need help in locating any of the rest of people to interview i.e. ethicist etc if you wish I may be able to help to identify someone. Thank you again for giving me the opportunity to be part of such an ambitious project, which certainly is way and above the expectations of any Masters programme final project that I am familiar with!! 

So, very well done and many. many congratulations.         

Dr. Magi Sue
(Senior Lecturer,
University of Southampton)

Hi Kim

Great to see you this evening; very well done with the book and all the hard work you have completed, not an easy task that showed dedication and a truthful account of people within the subject matter.

I have seen many books about transplants and donors, but what makes yours great is that the content portrays very many different perspectives and engages the reader in a modern and up to date way.

It would be fabulous if many people who needed a transplant or are thinking about signing the donor registry could read it.

I am very proud to be in your book and proud to know you, me and Zeena thoroughly enjoyed the show.

Best wishes

Namik (Heart Transplant Patient), Zeena, Shireen and Leyla

 

Dear Kim

I wanted to write to let you know just how much I thought of the book. It is simply fantastic. Great information for everyone and manages to stay touching throughout.

I hope to work with you to ensure that all patients entering the waiting list get given a copy of your work.

Once again thank you for all of your work on the subject.

Kind regards,

Alexander Hole (Kidney Recipient) 

 

Absolutely fabulous. Everyone on the waiting list should have one!

Professor John Wallwork, Heart Surgeon

 

Remarkable, just what the transplant community has been waiting for - amazing photography

Anna Perkins, Transplant Trust

 

Other Comments:

Well done - very pleased to see it in print.

We were very impressed by the quality of your book and exhibition.

This is fantastic! You make us so proud.

What an impressive piece of work! I hope it will make a very significant impact on the way people think about donation and transplant. It certainly should!

Such an inspirational piece of work. Congratulations. Every potential live donor should read this book to help them understand the gift they have to give. I hope to see it widely circulated soon!

Absolutely fantastic! You did bring tears to my eyes reading your book. Keep up the good work and look forward to seeing more of your books in Waterstones.

As a transplant recipient I think the book is marvellous. A must for every person who is diagnosed as requiring a transplant. The book must be available as a minimum in every transplant unit. Kim's work in producing the book must be applauded as an outstanding piece of work that can only improve transplantation and the positive issues surrounding it. 

Your photos are so full of emotion - they are extremely moving.

An inspiring exhibition. Thank you

What a fantastically inspirational collection of work!

I really appreciated your work, it combines perfectly art and social engagement... I wish you good luck for your next projects!

What you've done is amazing! Your commitment, strength, sensibility... keep following your instinct.

Truly inspirational work - you should be exceptionally proud of yourself.

Your commitment and determination really shows in this work. Someone will publish it... they would be crazy not to!

I still get emotional when I see your project. It's wonderful.