Organ Donation (Deemed Consent) Bill

Julie Elliott Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Julie Elliott (Sunderland Central) (Lab)]

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.

[Andrea Jenkyns (Morley and Outwood) (Con)]

My heart goes out to the hon. Lady for what she has been going through, and I am sure everyone in the House today would say the same. She mentioned dialysis, and I am going to mention a constituent of mine, a very young girl. This Facebook post hits home:

“Today 1,608 days with total kidney failure. Today 19,296 Hours spent on Dialysis. Today waiting for the precious call, a match has been found.”

Does the hon. Lady agree that when we think of such children, and people like her daughter, it is very hard not to support the Bill today?

[Julie Elliott]

Absolutely. As I have said, this sort of illness strikes indiscriminately, and when we attend appointments—I attend just about every appointment with Rebecca—we see everyone from very young people through to older people; we see people from all walks of life. It is heartbreaking seeing people with this sort of illness. Every one of those people has a family, has a story and has loved ones, and it is very difficult.

I want to talk a little about the impact of this kind of illness on the wider family. As Rebecca’s health rapidly deteriorated, she had to be off work sick quite a lot. She has had some considerable time off sick. Even though she is now back at work, she still gets days when, as happened this week, she is not very well in the middle of the day and has to come home. Dialysis does not mean that someone is fit, well, healthy and leading an absolutely normal life. She has been very lucky, as her employers, True Solicitors of Newcastle, have been an amazing support to her. They have done everything they can to help her. They have done fundraisers for kidney charities—I am thinking particularly of her colleagues Kay and Lindsey. If I am trying to get to the hospital from wherever I am when Rebecca suddenly takes ill, they will take her to hospital from work and sit with her until one of the family can get there. I want to thank them publicly, because many people in this situation are not so lucky and face losing their jobs, with all the hardships and problems that creates. So it is important to say thank you to people who have been fantastic.

Next I want to mention the renal unit at the Freeman Hospital in Newcastle. Not only is that a world-class unit, but it has some of the most amazing and dedicated staff I have ever come across. From the time someone walks through the door at the out-patients unit, the receptionist, Ann, is always smiling, always welcoming and always looking after them, and the same is true of everyone right through to the most senior doctors. We have seen a lot of different doctors as this illness has progressed. The whole team are amazing, particularly the PD nurses who are looking after Rebecca’s dialysis. They look after Rebecca, but they also look after her family and they have got to know us all, because we have all been there with her at different stages. They are the essence of everything that is great about our health service. They are working under enormous pressures on their time and resources, but they always have time for us. I want to say a personal thank you to them.

I know that this is not a political debate as such, but I am a politician, so I hope Members will give me a moment’s licence. I am going to say that I think the health service staff need a pay rise and the NHS needs more investment, because they are such amazing people and they literally make the difference every day between people living and dying.

The impact on our family has been huge. You go through a period of shock, disbelief and anger as to, “Why Rebecca?” More than one doctor has said to us through that period that it should not be happening to her, as she has been a fit, healthy young woman who has done everything right in looking after her health. They cannot find the reason this has happened. The emotions and journey you go through are like a rollercoaster, because we have to deal not just with the direct impact of what is happening medically to Rebecca, but with the emotional impact of seeing that what is happening to her might mean that my daughter might not be there when I am still here. That is not something any parent ever wants to consider. Although all my children are grown up, they are having to deal with seeing their mother coping less than I normally do. I am a fairly strident, coping kind of woman normally. All of them are dealing with the idea that their sister might not be here. That is all very, very difficult. So we have rallied round and all supported each other, and we remain very positive. Rebecca is very lucky that she has a brother and sisters, my sister, her husband and a great mother-in-law, who have all played their role in supporting this journey we are on, and continue to do so.

It is very difficult being on call for a phone call. My phone is with me all the time. It is very difficult working 300 miles away when you are in this situation. As we all know, we sometimes travel out of this country in this job, so whenever I travel out of the country on business with Parliament, I have a plan of how I am going to get back. It is important to thank colleagues in this place, from all parts of the House, who have given me a huge amount of support. The Whips have been fantastic; they have basically said, “Just go. Text us and tell us you’ve gone.” There is a slight personal thing in that as well, because our Deputy Chief Whip, my right hon. Friend the Member for Tynemouth (Mr Campbell), has known Rebecca since she was a child. As many Members will know, I was his agent in 1997 when he got elected to this place, and Rebecca, being my daughter, ran one of the committee rooms. The support has been really lovely. A lot of the time in this place the differences that we have are highlighted, but at the end of the day we are all people trying to do the best for our constituents and we all care about people.

For me, as a mother, my natural instinct has always been to make things better for my children—that is what we all do. Rebecca is always going to be the baby I gave birth to 36 years ago; you love that child instantly and unconditionally, and that never changes. It is terrible to be in a situation where I cannot fix something that has gone terribly wrong. But what I can do, from the privileged position I have of being a Member of this place, is raise awareness and campaign for a change in the law, to that of deemed consent. The change in the law needs to come, and I want to touch on the investment that needs to happen on the back of that change—this has been alluded to in a number of contributions today.

This issue needs to be discussed in schools and among families, so that transplantation becomes a normal part of the conversation of life. We also need investment in the health service to support what I believe will be an increase in the number of available donor organs.

[Andrew Percy (Brigg and Goole) (Con)]

I wish the hon. Lady and Rebecca all the very best for the future. The Bill is really important, which is why I am here to support it, but will she also acknowledge, as I am sure she will, those live donors who give an organ? My friend Jane has recently given a kidney to her nephew-in-law. That is an incredible thing to have done—for many of us, it is difficult to imagine it—and it has turned around the life of her nephew-in-law, in the same way that, I hope, Rebecca’s life will be turned around eventually. Although the Bill does not cover such people, they also deserve the House’s praise. Hopefully, another good thing that will come out of this debate is raised awareness of that possibility.

[Julie Elliott]

Absolutely. Five members of my family, including me, put ourselves forward to be donors, but none of us matched. Matching is really difficult. One family member is now entering a pool situation, which is a bit like a swap shop of organs, in case somebody has an organ that fits Rebecca and my family member’s fits somebody else. That is a marvellous thing to do and the hon. Gentleman is absolutely right to draw attention to it.

As has been mentioned, presumed consent does mean that people have the right to opt out of giving their organs, and some people will. It is very important for that to be in the legislation. I absolutely respect people’s decision to opt out, because it is not the right thing for everybody. That is as important as changing the law.

My final words are for the families of donors: your selflessness in donating your loved ones’ organs at a time of such personal grief, to save the lives of people you do not know, is such a wonderful thing. Everybody should be grateful for that and thank those people. The grief of having lost a loved one carries on forever, but I am sure that there is some comfort in the fact that their family has helped and their loved one’s organs have gone to help someone else. It is important to say thank you. As a family member of, hopefully one day, a recipient, I want to say thank you from the bottom of my heart. They are very special people.

Let us send the Bill to Committee and change the law to save more lives, for the thousands who are waiting for transplants. Today, we see Parliament at its best, overcoming political differences for something that just needs to change. It is a day we should be proud of.