Human Tissue

Nigel Evans Excerpts

Tuesday 19th May 2020 Commons Chamber

[Mr Deputy Speaker]

I call the Minister to move the motion. She is asked to speak for no more than 20 minutes.

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[Mr Deputy Speaker]

Just before I call Alex Norris, I advise those waiting to take part in the debate that there is a 10-minute limit on contributions, so could they please have a timing device available?

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[Dan Jarvis (Barnsley Central) (Lab) [V]]

[Inaudible.]

[Mr Deputy Speaker (Mr Nigel Evans)]

We have no audio, so we will go to Jim Shannon while we check that out.

[Jim Shannon (Strangford) (DUP) [V]]

Thank you, Mr Deputy Speaker, for allowing me to raise a few thoughts. The House may not be aware that my nephew, Peter, had a kidney replacement when he was a child, and that is one of the main reasons I have avidly supported organ donation. My family would have been devastated had that organ not been donated to save Peter’s life. I also absolutely believe that there must be the ability for someone to opt out if they have their own reasons for doing so, whether those are religious or otherwise.

I commend the hon. Member for Barnsley Central (Dan Jarvis) for what he has done—we look forward to his contribution—and I commend the former Member, Geoffrey Robinson; I was very happy to support and sign his Bill and we will see some of that become law tomorrow. I thank the Minister for her contribution and for bringing this statutory instrument forward—we are really pleased to see it. I also thank the shadow Minister for his contribution, which was very ably put together.

I will focus on one aspect of this draft legislation for organ donation. Three million people in the UK have chronic kidney disease, including some 1,000 children, and 65,000 people are being treated for kidney failure by dialysis or transplant. In the UK, 6,044 people are on the transplant list, and 4,737 are awaiting kidneys. That was data from the end of 2019, as the transplant programme is currently part-suspended. At least one person a day will die because they have waited too long. Eight out of 10 people waiting are hoping for a kidney. NHS Blood and Transplant estimated that this change in the law has the potential to lead to 700 more transplants each year by 2030—700 lives that can be changed, and 700 lives that can be saved. This may have to be extended by a year because of the pandemic.

When kidneys fail, three things happen: dialysis, a transplant or death. Dialysis is distressing and demanding, with four to five-hour sessions three days a week and dietary and fluid restrictions. Many of my constituents have had to go through this, as my nephew did for a period of time. People are often unable to continue to work. Families and relationships are strained and depression is common. It has been reported that the levels of pain are equivalent to those of people with terminal cancer. Patients are exhausted, with aching bones, reduced mobility and constant itching. A transplant is transformational in restoring quality and quantity of life, and we recognise the selfless generosity of organ donors, both living and deceased. We commend NHS Blood and Transplant on its achievements; more than 50,000 people are alive with transplants in the UK.

Kidney transplantation is also economically beneficial. I know that it is not always a good thing to look at the economics and the financial aspect, but a transplant has a cost of £5,000 per annum, compared with a cost of £30,800 per annum for dialysis, so there is a financial factor that we need to bear in mind.

I am so pleased that this SI means that even during this crisis we are continuing and prioritising the ability to donate kidneys and other organs. I congratulate the Government, the Minister and the Opposition on pushing this issue. There were 28 transplants in Northern Ireland last month, so I pay tribute to the team there. This legislation is tremendous news and I hope that the Northern Ireland Assembly will follow the lead of this place on the opt-out issue. The figures for transplants in Northern Ireland were way above and beyond what they normally are, so again this shows the good that can happen as a result of where we are.

We are pleased to see this legislation, but is clear that there must not be an end to the duty of care. We must also be sure to invest in new technology. There are new machines which, I am told, have shown great promise in preserving or even reconditioning donated organs. That must be investigated by the Department. Will the Minister, in her summing up, give the House some indication of how that will work and an update on those new machines and any other innovations in medicines for the future?

It is also imperative to ensure that regular monitoring is carried out and that the impact of the new law is reported back to the House. Again I look to the Minister for those assurances, because we will doing this from tomorrow, and the House will need to know how it is progressing and whether we are achieving the figures and stats that we should be achieving. It is also essential that we have education for healthcare staff and the public. Increasing transplantation requires appropriately trained staff working with families, who will still need to allow a donation to take place. This will require comprehensive, consistent and continuous education for members of the public and healthcare staff, and these things need to happen as soon as is practicable. Previously agreed funding for NHS Blood and Transplant’s work should be made available for this work, and I ask the Minister for an update on where we are in relation to that.

Adequate system capacity is needed to permit transplant procedures, as well as a culture that sees organ donation as the norm. I would love to see that happening. Perhaps after tomorrow we will see some of that taking place. There were already concerns, prior to covid-19, about pressure on theatre space, equipment and staff to cope with an increase in organ availability, including specialist organ donation nurses to support bereaved families. Modelling for the estimated additional transplants has been done, and NHS trusts have been asked to plan accordingly. That will need to be revisited as trusts emerge from the current crisis, and I am sure that the Minister will be all over that. In order for organ donation to be able to continue in the covid-19 age, support and discussion with bereaved families must be facilitated more than ever. We welcome the strengthened role for families in the code of practice, and we thank the Minister for bringing that forward. Technology must be harnessed to aid those vital conversations.

I concur with the shadow Minister’s comments about BAME communities. Covid-19 has brought the need to address the health inequalities faced by BAME communities into sharp relief. There is too much inequality in transplant deaths. In 2018, 21% of the people who died waiting for a transplant were from black, Asian or minority ethnic groups. People from BAME communities wait six months for an organ despite being more at risk of kidney failure, because fewer organs are available from donors in those communities. There is a higher chance of a successful transplant if the organ comes from an individual from the same ethnic background, and it is important that those groups are the particular focus of awareness campaigns. Will the Minister give us her thoughts on that as well?

We welcome the revised codes of practice having a greater focus on faiths and beliefs. We believe that that will support better conversations and give greater assurances to families when a potential donor’s faith or belief is an important part of that decision making. It is important that we have that, and we thank the Government for putting it into the code of practice.

I was pleased by the outcome of the consultation on the organs—[Inaudible.]—that deemed consent should apply to so-called routine transplants only, and that any rare or novel transplants should be subject to explicit consent. The statutory instrument is therefore limited. What we are talking about are routine transplants for heart, lung, liver, kidney, intestinal organs, small bowel, stomach, abdominal wall, colon, spleen or cornea.

This SI is important. I absolutely agree with Kidney Care UK when it says that our NHS staff will be exhausted and that resources have been stretched by the pandemic and are likely to be for some time. However, we urge efforts to take forward implementation at the appropriate time to give renewed hope to patients waiting for a life-transforming transplant. We say thank you so much and well done to the Minister, her team and everyone concerned.

[Mr Deputy Speaker (Mr Nigel Evans)]

Thank you, Jim Shannon. We will now try again with Dan Jarvis—can we hear you?

[Dan Jarvis (Barnsley Central) (Lab)]

Thank you, Mr Deputy Speaker. It is a pleasure to be called in this debate—and hopefully to be heard.

From tomorrow, as we have heard, changes to the organ donation system following the implementation of the Organ Donation (Deemed Consent) Act 2019, more commonly known as Max and Keira’s law, come into effect. This means that every adult in England will be considered to be a donor unless they opt out or are excluded. This new law has the potential to save hundreds of lives every year. For all those desperately waiting for a transplant, the efficacy of these changes is literally a matter of life and death. We owe it to them to ensure that it is a success.

I would like briefly to pay tribute to the constructive spirit in which the Government approached the Bill from the outset, and to all those without whom the campaign to change the law would not have succeeded. First and foremost, my friend and former colleague Geoffrey Robinson, formerly of this parish, showed real leadership in promoting the Bill from the outset. The former Health Minister, the hon. Member for Thurrock (Jackie Doyle-Price), was brilliant throughout the passage of the Bill, as were the right hon. Members for Maidenhead (Mrs May) and for South West Surrey (Jeremy Hunt), my right hon. Friend the Member for Islington North (Jeremy Corbyn), the current Secretary of State, and Lord Hunt of Kings Heath. Alison Phillips, the editor of the Daily Mirror, and her fantastic team also championed this cause and very helpfully raised public awareness. Kidney Care UK provided outstanding support during the campaign and continues to provide outstanding support to ensure that Max and Keira’s law will be a success.

Most of all, though, I would like to thank Max Johnson, his mother Emma, and the family of Keira Ball. For those who may not be familiar with it, as stories go there are few more powerful than Max and Keira’s. Keira Ball was nine years old when, tragically, she died. Despite the unimaginable grief, Keira’s parents bravely and selflessly chose to donate her organs, including her heart, to a young boy, Max Johnson, who was in urgent need of a transplant. Max recovered from his operation and has been a tireless champion of the new opt-out system for organ donation. Tomorrow will be a very special day for many people, but for Max it will be especially poignant.

I am extremely proud to have worked with Geoffrey and with others to take Max and Keira’s law through Parliament. I would like briefly to reflect on the reasons I believe that it is so important. First and foremost, this law is about saving lives. We are all, I know, extremely grateful for the outstanding job that NHS Blood and Transplant does. In the year to this April, there were 3,763 organ transplants from deceased donors, in addition to 970 living donations. Yet despite the incredible efforts made, demand for organs heavily outweighs supply. Last year, as the Minister reflected on, more than 400 people died while waiting for a transplant and hundreds more were suspended from the waiting list after becoming too ill to undergo the operation they so desperately needed. There are currently about 5,000 people in the UK who, just like Max was, are living under a cloud of uncertainty, waiting and hoping for an operation that will save their life.

One of the many devastating knock-on consequences of the coronavirus crisis is the impact it has had on those in need of an organ transplant. Operations have been postponed and the number of people dying while waiting for a transplant has sharply risen. The coronavirus is putting huge extra strain on a system already under pressure.

As well as offering hope to families, I believe that Max and Keira’s law will also benefit society by helping to bring people together. The decision that Keira’s parents took was an act of compassion that represents the best of humanity—a lesson in solidarity from which we can all learn. We must be mindful, however, that the new organ donation system will not in itself be a silver- bullet solution. We all still need to play our part. We know that this law will improve the consent rate. The devolved Government in Wales introduced their opt-out system in December 2015. The result was stark: Wales now has the highest consent rate of any UK nation at 77%, up from 58% five years ago.

However, if we are going to make a success of the new system, NHS Blood and Transplant will require additional capacity to deal with an increase in donors. That means that the Government must ensure that our NHS trusts have the resources they need to perform the operations, to support the donors and their families, and to care for the patients after their transplants.

This also includes the medical staff, so they understand the new system and encourage bereaved families to talk, understand and support their loved one’s wishes. The Government must also maintain their support for the public awareness campaign, so that the changes are widely understood and everybody knows that the choice to donate is still yours to make. Donors should know that they will be treated with dignity and respect, and the family of the deceased will still be involved.

I am very aware of the Department of Health and Social Care’s work, including with the National Black, Asian and Minority Ethnic Transplant Alliance and the launch of the community investment scheme, but it is essential that we continue to direct our efforts into BAME communities, which are often most affected. Nearly a third of those on the active transplant list are from black, Asian or ethnic minority backgrounds, and it is members of that community who also wait longer for operations. Improving education and raising awareness is important so that everyone has an equal chance, regardless of their ethnicity, of having a life-saving transplant.

We also all have a responsibility to record our choice on the NHS’s organ donor register and, crucially, to tell our loved ones what our intentions are. The coronavirus has left thousands of families in mourning, shattered our economy and upended our entire way of life. Good news is in short supply, but the implementation of Max and Keira’s law affords us a rare glimmer of hope—the hope that more lives will be saved and the hope that we, too, can act with decency and empathy, even in the worst of times. Thank you to all those who made it happen.

[Mr Deputy Speaker (Mr Nigel Evans)]

Thank you, Dan Jarvis. We were the better for hearing, as well as seeing you. Please send our very best wishes for a long and healthy future to Max.

[Helen Whately]

May I welcome the hon. Member for Nottingham North (Alex Norris) to his place on the Front Bench and say how very good it is to see him there? I thank him for his kind words at the beginning of his speech and for his constructive tone in this debate. I look forward to that in our future conversations. I also welcome all the helpful and constructive comments we have heard from those who have been able to contribute to the debate today remotely and the work of all of those who have been involved in getting this legislation on to the statute book.

As I said in opening the debate, thousands of people up and down the country are in desperate need of a transplant. While covid-19 has completely stopped transplant services in some countries, we have been able to continue with very urgent transplants, and that is testament to the great work of NHS Blood and Transplant and NHS England. We now want to go further, and we must increase the availability of organs for transplant, which this important legislation will allow us to do, especially at a time when covid-19 has taught us so much about how fragile life is.

I should say that patient safety and the involvement of the family in discussions about organ donation will remain absolutely a paramount consideration, and we will keep raising awareness of the importance of organ donation. The communication campaign from NHS Blood and Transplant has seen awareness as high as 62% of the population at the height of the campaign, and that must go further. We must continue tackling some of the myths about organ donation.

Coming to some specific questions and points made by other Members, the hon. Member for Nottingham North asked about the recovery plan following covid-19 and the unavoidable reduction in transplants that has happened during the pandemic. We are determined to see transplant units become fully operational as soon as possible. Most transplant units are working on their plans to reopen or to increase services if they have stayed open, and I expect to see a rapid ramping up of their activity.

The hon. Gentleman asked about specialist nurses, and I can confirm that specialist nurses have indeed been recruited and have training ongoing in, for instance, the principles of this legislation and in practical sessions on the conversations and approaches to families. I am happy to come back to him separately with some further detail about that work.

The hon. Gentleman and the hon. Members for Strangford (Jim Shannon) and for Coventry North West (Taiwo Owatemi) made very important points about BAME communities. It is clearly of great concern that there is reduced access to organs for transplant, with a shortage particularly of donor organs for some people in BAME communities. We really want this law to address some of those very concerning health inequalities. Specifically, black and Asian people wait on average about 11 months and six months longer, respectively, for an organ match than the rest of the population. That is absolutely something that this legislation should and must address.

The hon. Member for Nottingham North asked about communications to BAME communities, because that is crucial for the success of this change. I should say to him that there has been specific funding to BAME and faith groups to raise awareness within their communities, but I agree that more must be done to make sure that this is successful.

The hon. Member for Coventry North West asked about screening for covid-19. There are two sides to this. First, a registry has been set up to monitor covid cases among those waiting for a transplant, and, secondly, I have been assured that the organs of those who have covid would not be donated and used for transplant.

I was also asked about the resources to fund this, and I can say that of course we will make sure that the NHS has the resources it needs to be able to carry out these crucial transplants.

It is important that this legislation is approved to provide legal certainty that deemed consent will apply only to the routine transplants that so many people in this country need. I want to thank everyone who has spoken and contributed to the work on these regulations. The regulations are an integral part of making the new system of consent work, and I would urge all my fellow parliamentarians to approve them. We owe it to everyone waiting for a transplant to make sure that Max and Keira’s law comes into force and makes a difference to all those who are waiting for a transplant.

[Mr Deputy Speaker (Mr Nigel Evans)]

I announced to the House earlier this afternoon my provisional determination that a remote Division would not take place on the question now before the House. This is also my final determination.

Question put and agreed to.

Resolved,

That the draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020, which were laid before this House on 25 February, be approved.