Tuesday, 30 March 2010
Mark Murphy - Chief Executive of the Irish Kidney Association
Philip Beggs was 12 years old, 6 weeks away from his 13th birthday, when he was knocked down by a car when cycling home. His mother, Marian, had seen him two hours before when in the local garage. He was hanging out with his friends and she asked him if he wanted a lift. He said he might hang around for a while, and he had the bike, so he'd cycle home. He asked her what was for dinner, and when she told him he said he'd definitely be back in time because it sounded great.
Two hours later he got a call from a family friend who had been on the road at the time of the accident to come down to the scene. Philip was still alive at this stage and someone had called an ambulance, but she wasn't allowed near him and didn't even think it was too serious because she hadn't seen the damage done to his head. She said that they wouldn't let her in the ambulance because they needed to work on him.
Philip passed away the next day, but had been on life support for 24 hours. When Marian was in the hospital with her husband she saw the signs for the organ donation. She herself carried a card and she knew that this would be the next step. She didn't say anything about it to her husband, but when the doctors approached her the next day about donating organs, she had already made up her mind. They needed to know as soon as possible and the longer a body is on life support, the more likely the organs are to fail. The hardest part of the process was that she didn't want to let go, but knew it was the right thing to do.
Marian and her husband took only 15 minutes to decide that they would give up his organs. His liver went to a 4 year old girl in England, and his kidneys to two women, one aged 35 and a 30 year old. They didn't use his heart and lungs, and she didn't allow them take their eyes because she said he had beautiful eyes, and wanted to make sure that he could see.
Two years later Marian was diagnosed with kidney failure. She was put on dialysis and was told she needed a transplant. Although she was on a waiting list for 2 years, she was sure that Philip was looking over her, so she'd get a kidney. She had mainly a positive attitude, but there was a particular low point over the course of her illness when everything that could have gone wrong did go wrong, and got quite disheartened, but managed to pull herself back up.
When her transplant was completed almost 5 years to the day that her son had passed away, she said that as soon as she woke up from the operation she woke up with a whole new lease of life. She was so grateful and happy about her second chance, and even the nurses couldn't believe how quickly she was up and about, and was home within the week.
They still have fond memories of Philip and have dedicated a Facebook page to his 21st birthday. Marian is married to her husband Jim, and has three other children, Jennifer who is 36, Anita who is now 32 and Jason who is 35. Philip was the baby of the family.
Mark Murphy:- Irish Kidney Association
How many people in Ireland carry a donor card?
According to an European commission study Ireland had the third highest rate of donor card holding, with 30% of us carrying a card.
So Irish people are willing to donate?
Yes, in fact the EU did a separate study to showing that when people are approached after the death of a loved one, 90% of people will give consent to donate organs. We did our own study which is more around the 85% mark.
For every million in Ireland, we have 20 donors a year. In the UK this figure is 10, and in Spain, which has the highest rate in the world, with 35.
Will there be a move to make it compulsory?
Hopefully not. At the moment we are driving to establish a register for donors, which will make the process itself more efficient, although this is still very much so a work in progress. Britian have up to 16 million people on the register.
Why should it be not be compulsory?
Spain was one of the first countries to have compulsory donations in the 1970's (presumed consent). Ten years later it was realised to be unworkable, mainly because it was too difficult to inflict the law onto people who didn't give consent. However there were areas of the country and certain hospitals that performed better than others, so they continued with the process of developing organ donation regulators and donor coordinators so that the process is extremely efficient. In the end, people should always have a right to say no.
Is there an Act or proposal going through the legislation process at the moment?
The 'Human Tissue Act' is being brought through the Dail at the moment, to regulate the donation process, but I have a feeling that it's on the C List at the moment, and it probably won't be passes in the near future. However in April the EU will implement changes to improve the quality of safe organ transplants across borders, so although this won't change the practice in Ireland, there may be more recognition and funding.
What should I do if I make the decision to be an organ donor?
Carry an organ donor card. This is the best practice at the moment because it requires a signature from the next of kin. This means that the donor is forced to have the conversation with at least one member of their family, although ideally it should be with all members. This is why we have included the signature in the card, because the law at the moment is that the family have to give consent before an organs are taken.
What about ticking the box on your driving licence?
This is a practice from 20 years ago and we don't recommend it because there is no need for a signature from next of kin.
What if there is no next of kin or family member around at the time of death?
In this case we can't take the organs even if they carry a card, for fear of the relatives arriving as some point.
If someone doesn't carry a donor card, does that mean they can't donate organs in the case of an accident?
A donor coordinator is in hospitals to approach families whose loved one is officieally brian dead and being kept alive by life support alone. They cannot approach them before this point.
Do most people agree?
As before 85% agree, and 95% of these people actually approach the hospital before the coordinator approaches them.
What is the waiting time for people looking for a transplant?
It depends on the organs, but in the last ten years the waiting time for a kidney transplant has doubled.
How many people have been saved?
243 organ transplants occurred in Ireland in 2009. There were 154 deceased donor kidney transplants at Beaumont Hospital. 8 pancreases were transplanted simultaneously with a kidney and Beaumont conducted the first pancreas alone transplant since 2003.
22 extra kidney transplants were conducted via living donors making an overall total of 176 kidney transplants of which 172 took place at Beaumont Hospital and 4 in the UK. In 2009, there were overall 30 kidney transplants more than in each of the previous three years. There were 64 liver transplants conducted in St. Vincent's Hospital last year. 11 heart transplants and 5 lung transplants were performed at the Mater Hospital.
Do the family need to decide within a certain time?
Once the body is on life support they can say their goodbyes and make their decision in their own time. However once the organ is removed there is a short time span, in Ireland the organ can be used within 20 hours and in the UK it is 24 hours.
How to help:-
Throughout the Week, Irish Kidney Association volunteers will be out on the streets and in shopping centres throughout the country selling 'forget me not flower' emblems (the symbol of transplantation), brooches, magnetic car magnets and organ donor keyrings and newly introduced packs of forget-me-not flower seeds.
Proceeds will go to the Irish Kidney Association's support programme for patients on dialysis and those patients fortunate enough to have a kidney transplant. The support programme includes the running of a 10 bed renal support centre in Beaumont Hospital and patient holiday centres in Kerry and Tramore, as well as patient aid and counselling services, patient training and rehabilitative work placement, health promotion and the provision of kidney patient information and education.
The Irish Kidney Association is the organisation charged with the promotion and distribution of the organ donor card in Ireland on behalf of all patient groups with an interest in organ donation who form the Irish Donor Network*.
Information factfiles which accompany organ donor cards can be obtained (free of charge) from the Irish Kidney Association and are available nationwide from pharmacies, GP surgeries and Citizen Information Offices and Credit Unions.
Organ Donor Cards can also be obtained by phoning the Irish Kidney Association LoCall 1890 543639 or Freetext the word DONOR to 50050. Visit website www.ika.ie