Stroud man in need of kidney calls for law change on organ donation
DAD Dion Dean knows all too well about the agonising wait for life-changing surgery.
The 33-year-old is in desperate need of a new kidney and is campaigning to change the law to increase the number of organs available for transplant.
The dad-of-two, from Stroud, wants the current organ donor system set up to be changed from an 'opt-in' to one with presumed consent.
"It would increase the chance of a transplant for people like me with rare blood or tissue types," he said.
"It would mean everything for me to have a new kidney and to my children and wife.
"I have no life really," he said.
Dion, who was diagnosed with a kidney disorder eight years ago, has been told only four per cent of the population have his blood group, which is B positive. And with a rare tissue group on top he does not know how long it will take to find a match.
He faces three sessions of dialysis every week until a transplant comes up and worries about the impact his condition has on his relationship with his children – Chloe, 11, and Cory, seven.
"I lose days. I'm laid down and tired and don't want to answer the phone. I would like to be able to play with them and interact more," he said.
Dion said he has not been offered a kidney by anyone he knows and does not want to ask.
"My hope is with the organ donor register. I would ask people to re-think about signing up - especially if they have a rare blood group," he added.
His wife Lisa, 31, said: "A transplant would change our lives.
"Dion is going through the illness but so are me and the kids. It would be the chance for us to have a normal family life and do what other families do."
Dion, who has been on and off the transplant list for six years, is backing The Citizen's Save a Life Campaign. But on March 5, Dion and his family will start a petition to change the NHS Organ Donor Register to an opt-out system.
They will be campaigning for support in Stroud ahead of World Kidney Day on March 10.
The petition has the backing of Stroud MP Neil Carmichael.
He said: "I have pledged to support Dion and his wife Lisa's campaign and will be the first to sign the petition to change the law. I will endeavour to raise the issue in my work."
To sign up to the NHS Organ Donor Register, fill in the form on this page or download the form on our website at www.thisisgloucestershire.co.uk/ donor campaign.
24 Comments
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by Az Mansell, Kidderminster
Friday, February 18 2011, 7:14AM
“I'm sorry ldn, but you've completely ignored everything I've said to make a point.
you've ignored the "presumed consent" part completely. I won't explain again.
I'm pushing this change in the law, I have the British heart foundation, British medical association, kidney Wales, the Welsh assembly and a huge petition of the general public and celebrity behind me.
this change will happen”
by Ldn, Gloucester
Thursday, February 17 2011, 10:06PM
“I think that presumed consent is quite a dangerous concept. Because I haven't explicitly told someone not to take my car, does that mean they can presume it's ok to take it? Because I'm presumably ok with it? It might sound a silly comparasion but have a think about it. We can't assume that the 67% of people who agree with the idea of donation but haven't signed up for it yet, agree for their organs to be taken. There's a difference to agreeing with something in theory and doing it in practice.
And yes I have experienced a friend needing a transplant. She died before she could get one. But do know what, she agreed that with me. She didn't want the organs of someone who didn't want her to have them.”
by Jayne, Stroud
Thursday, February 17 2011, 4:24PM
“Cleopatra,. I am sorry that that has happened but I personally think it is an unusual case.
I am in full support of opt out, I found out a few years ago that I was born with a heart conditition called Cardiomyopathy, I am coping at the moment with drugs and a fitted device,
However I know that in the future my only hope will be a Heart Transplant,
As a teenager I carried a transpnat card and still do, and when my husband died I asked if his organs could be used for transplant but sadly not possible,
I have lost numerous freinds whom I have met in Cardiac wards who have died waiting for a much needed Transplant.
I want to grow old and see my children and possibly grandchildren, but I know that without the kind donations of organs that might not be possible.
Please visit
http://donnasdream.co.uk/
I never met Donna but talked to her many times, we laughed and cryed together, She was one hell of a young lady,”
by Az Mansell, Kidderminster
Thursday, February 17 2011, 4:21PM
“From the British Heart Foundations website and endorsed by Donnas Dream:
Changing to an ¿opt out¿ system
We want to see a change in the law to an opt out system, meaning that everyone would automatically be an organ donor unless they chose not to be.
This change would encourage people to talk to their families about their wishes and increase public support for organ donation. An opt out system must:
- enable people to easily opt out of organ donation if they wish to
- contain safeguards to ensure that an individual¿s wish to opt out is respected and honoured
- provide close relatives with final say to refuse permission at the time of request.”
by Az, kidderminster
Thursday, February 17 2011, 4:18PM
“@Queen of sheeba
A soft opt out would take away some of the pain and burden for the donor family if they already knew about their loved ones wishes.
Please dont forget if we do change to an opt out there will be a massive amount of publicity through all types of media explaining how to opt out. It wont just be a case of "right your on the register..deal with it". The public will be given the option and right to opt out at various times in their life, such as applying for a drivers licence and any relevant websites. Im pretty sure the Donnas Dream website will include an opt out form as standard.
Please read the proposals for opt out from the British Heart Foundation and endorsed by Donnas Dream...
Changing to an ¿opt out¿ system
We want to see a change in the law to an opt out system, meaning that everyone would automatically be an organ donor unless they chose not to be.
This change would encourage people to talk to their families about their wishes and increase public support for organ donation. An opt out system must:
- enable people to easily opt out of organ donation if they wish to
- contain safeguards to ensure that an individual¿s wish to opt out is respected and honoured
- provide close relatives with final say to refuse permission at the time of request.
Az Mansell
Donnas Dream”
by Az Mansell | Donnas Dream, Kidderminster
Thursday, February 17 2011, 4:09PM
“Cleopatra,
Personal experiences aside i am fighting for this change as i think it is the best way forward.
90% of people out on the street say they agree with organ donation but only 27% have gotten around to signing on the register. Whats going on?
This occurrence you speak of should not have happened and is certainly not a part of our proposals for an opt out (by the way, our proposed system is called a "Soft Opt Out" and not "Presumed Consent" which spain has). I can only assume it was entangled in the NHS Database issue which has been in the press lately.
Its certainly not what we are fighting for.
We are fighting for more donor organs.
whether it be through a change to a soft opt out system, more transplant co-ordinators, better training, an increase in intensive care units or a combination of all of these things, we need, deperately to get more organs. 3 people a day are dying. that means the day my wife died 2 more people died, then 3 the next and 3 the next and so on.
Please take the time to read this http://donnasdream.co.uk/home/
Az Mansell
http://donnasdream.co.uk”
by Cleopatra, Cheltenham
Thursday, February 17 2011, 3:58PM
“Az Mansell | Donnas Dream, Kidderminster - I appreciate that your comments come from personal experience but CANNOT and DON'T are two different things and I know of a situation where organs were removed despite the family denying permission.”
by Az Mansell | Donnas Dream, Kidderminster
Thursday, February 17 2011, 3:32PM
“RIGHT, Can i stop a common mistake made by KeithS and countless others.
Regardless of which system we have, be it OPT IN (current system) or OPT OUT (proposed system) the Donor family will ALWAYS...ALWAYS have the final say and can veto the descision regardless of whether the donor wished to be a donor.
That is a FACT and will never change.
Therefore the state CANNOT use organs for whatever it wants without consent from the donor family.
Thankyou
Az Mansell
Donnas Dream
http://donnasdream.co.uk”
by Victor Meldrew, One Foot in the Grave
Thursday, February 17 2011, 3:15PM
“Given the civil servant's propensity for losing data, whatever the system, is to have tattoo on sole of foot.
But as they say in Dragon's Den;
'Im OUT!!”
by Queen of Sheba, Cheltenham
Thursday, February 17 2011, 2:43PM
“Sue ¿ If the ¿donation assessment team¿ are going to go through the process of obtaining consent from the next of kin even in a presumed consent context what is the point of changing the current system.?”