Kidney Transplant Bill [HL]

My Lords, I, too, heartily congratulate the noble Baroness, Lady Finlay, on the Bill. As people live longer and technical advances are made in science and medicine, the Bill will become increasingly important as it will enable the public to be better informed. I shall concentrate on the black and south Asian communities. I have no expertise or other knowledge in the field of medicine, but I am concerned about the lack of progress in reaching out to black and south Asian communities. I shall speak on research done by others. My interest started from being closely involved with watching family members and friends, and from watching people wait, often with great desperation, while resigning themselves to the fact that no organ transplants would be available to them. People in the south Asian and Afro-Caribbean communities have a prevalence of type 2 diabetes four times higher than people in the white community. There are around 300,000 people from those communities with type 2 diabetes, and the number is growing. It has been reported that around 20 per cent of the south Asian community aged between 40 and 49 have type 2 diabetes—and that figure is growing—and by the age of 65 a third of that population has it. Professor Randhawa of Bedfordshire University has spent many years researching issues relating to kidney disease and diabetes among minority ethnic groups. His research has been pivotal in pushing forward the need to see how much more can be done to highlight issues relating to donor information, transplants and support for people in those groups. One in eight people who died in 2006 while waiting for a transplant were of Afro-Caribbean or south Asian origin. While people from the south Asian community make up just over 4 per cent of the population of the United Kingdom, 6.5 per cent of those needing liver transplants come from that community. Approximately 14 per cent of people waiting for a kidney transplant are from the south Asian community. The lack of donors coming from the Afro-Caribbean and south Asian communities will see the human and economic costs rise, and that needs addressing. I hope that the Bill will do that. Studies show that giving information on small lifestyle changes can significantly reduce the onset of type 2 diabetes. Poor physical activity, high fat and sugar diets and cultural needs are among the range of factors that need to be addressed. I was horrified to read while on a flight to India last year that in India they are expecting 30 million people to suffer from diabetes within the next 25 years, and that number is rising. That is a frightening figure. We must convince people to be part of a donor register or to be prepared to donate after death. Much research has been undertaken to question why there continues to be a lack of awareness of the need of donors among those two communities. Most people remain unaware of the specific need for organs from their communities, yet among the main south Asian religions of Hinduism, Islam and Sikhism the notion of gifting to assist society is highly valued. It is therefore important that a number of different channels be used to raise awareness among different generations from those communities. If we were to adopt the opt-out system, there would be willingness to broach the subject, which is difficult and emotionally charged as it currently stands. It would be discussed more easily in those minority communities. I have seen misery at first hand. I watched a close friend endure several years of dialysis while waiting for a donation that did not come. Other complications followed, and we watched a healthy, active member of society deteriorate into a person whose quality of life was measured by ““How do I feel?”” after a session of dialysis. Towards the end of his life, he wanted to die. I am sure we all have incredible stories of people we know or knew. The sad reality for me is to know that many from my community have poorer life chances because of lack of awareness about being donor card holders. At least under the presumed consent system, unless someone decides to opt out, the family and medical teams would not have to agonise so much over the difficult decisions they face today. I have been told stories of people who have gone to the Indian sub-continent to purchase organs, particularly kidneys. They have sought out poor families in desperate need of financial help. They are so desperate that they are willing to bypass the many crucial tests needed for matching. I had not really thought long and hard about kidney donation until the loss of my dear friend. I hope that the Bill will be much strengthened and that, if nothing else, the Government will take greater steps to ensure greater public awareness.