Organ Donation (Deemed Consent) Bill — House of Commons, 2018-02-23
Topic: Health
Julie Elliott (Labour, Centre-left): I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on his success in the private Members’ Bills ballot, which is no mean achievement, and on choosing this most important topic. I have always supported an opt-out system, as opposed to an opt-in system. What I will talk about today has not resulted in my decision that an opt-out system is right, but it has amplified the importance of my decision I pay tribute to my hon. Friend the Member for Barnsley Central (Dan Jarvis), who has done so much good campaigning on this issue. I also pay tribute to the Daily Mirror, which has already been mentioned, for its campaign, and to the Prime Minister and the Government for their statement this week in support of the campaign—that is very important Today I will talk about my family’s story. I rarely talk about my family in public, because it is me, not them, who entered public life. There is nothing special or unusual about my family, and what has happened to us over the past 18 months could happen to anyone. Young or old, rich or poor, there is no differentiation when such things happen, and they highlight the reality of the need to change the law to deemed consent I have four grown-up children, all now either married or with long-term partners, and five wonderful grandchildren. We are a very close family, and I am lucky that we all live within two miles of each other in Sunderland—when I am not down here. My eldest daughter, Rebecca, is now 36. She is married and has a six-year-old daughter, and she was referred to the renal unit of the Freeman Hospital in Newcastle after routine blood tests showed a problem with her kidney function. That was in October 2016, so not that long ago After Rebecca spent a week or so in hospital, it became clear that she was quite ill with significantly reduced kidney function that could at some point lead to her needing a transplant. That was where we thought we were, which was a big enough shock in itself, but the medical team at the Freeman thought that they could stabilise her condition Rebecca had been reasonably okay until that point. She had had a few issues health-wise, but she was okay, so the diagnosis of chronic kidney disease came as a huge shock to her, to me and to our family and friends. To face the reality of the fragility of life is very hard at any time, but facing it for one of my children, although she is an adult, is one of the hardest things I have ever had to do My daughter had until recently been a healthy, happy young woman. She was quite a serious runner in her spare time, and she regularly ran half-marathons and, occasionally, marathons. In fact, in the weeks before she took ill in October 2016, she had gained a place at the 2017 London marathon—she did not run it, obviously. It is impossible to describe the shock of someone like that suddenly becoming so ill. I have to say that she did not get her fitness drive from her mother, who goes to watch her run but does not run herself Sadly, Rebecca’s condition deteriorated very quickly, and in June 2017 she had surgery to enable her to start dialysis. One of the few positive parts of the general election campaign for me was that I was at home for six weeks, so during the time when her health was deteriorating rapidly I was able to drop everything and get to the hospital quickly. It is a lot harder to do that when I am 300 miles away Rebecca started dialysis last July, and I want to talk a little about the daily reality of her life. In the two or three months leading up to her having surgery she became increasingly unwell, to a point where, daily during those last few weeks, she was just lying on the sofa after she got up and she was not eating particularly well, if at all. She had the odd slice of toast or bowl of cereal. One thing that happens when people have kidney failure is that they feel very sick and generally unwell, with no energy. She could not really walk to the end of the street and she certainly could not take part in all the things that her daughter did on a day-to-day basis When dialysis was first mentioned to us, it was a terrifying prospect, but its arrival has given Rebecca a quality of life again. She does PD—peritoneal dialysis. She has a machine at home and links on to it every night, and for eight hours her body dialyses on it. That means that she has got some quality of life back. She is back at work, but she does have restrictions. She has to have a restricted diet, which for her means no coffee, chocolate or cheese—three things she loves. She gets two of those from her mother, but I am a tea drinker, not a coffee drinker. She is here and she is alive. Whenever she has a bad day—she does have bad days emotionally, because this is a difficult thing to be dealing with—and she says, "I am sick of this dialysis", I say, "Just think: what’s the alternative, Rebecca?" That quickly focuses the mind and she picks herself up As a family, and with close friends, we have all rallied round to support Rebecca and each other through this challenging time.