PARLIAMENTARY DEBATE
Human Tissue - 19 May 2020 (Commons/Commons Chamber)
Debate Detail
Contributions from Helen Whately, are highlighted with a yellow border.
Mr Deputy Speaker
I call the Minister to move the motion. She is asked to speak for no more than 20 minutes.
00:03:28
Helen Whately
The Minister for Care
I beg to move,
That the draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020, which were laid before this House on 25 February, be approved.
Before I explain the draft regulations, I would like to say a few words about why we are changing the law on organ donation. Today more than 5,000 people in England are waiting for a transplant, but, sadly, by the time a suitable organ is found some people will have become too ill to receive one. Tragically, last year alone 777 patients were removed from the transplant list and 400 died waiting for a transplant. There is no option but to take decisive action to address the acute shortage of organs and save the lives of those waiting for a transplant. That is why we passed the Organ Donation (Deemed Consent) Act 2019, which amends the Human Tissue Act 2004 and sets up the new system of consent for organ and tissue donation in England, which is known as “deemed consent” or “opt-out”.
I wish to thank the hon. Member for Barnsley Central (Dan Jarvis), my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe), my right hon. Friends the Members for Maidenhead (Mrs May) and for South West Surrey (Jeremy Hunt), a previous Member of this House, Geoffrey Robinson, and Lord Hunt of Kings Heath for their work and support, which has got us to where we are today. They all started this journey for us showing immense leadership, and they continue to show their strong commitment to this cause.
Subject to approval of these regulations, we aim for deemed consent to become legal on 20 May. While not many transplants are taking place earlier, during the peak of covid-19, NHS Blood and Transplant has already started the recovery process to get transplant units up and running as much as possible. Guidance on how best to restart or extend the transplant service was sent by NHSBT to all transplant units on 26 April. A letter was then sent on 1 May to all trusts with transplant units, asking them to actively review the situation where transplant units have reduced their services.
To illustrate the progress that is being made to get the transplant system up and running again, on a normal day NHS Blood and Transplant would have received about 55 referrals of a potential donor and would aim for five actual donors, and it would carry out about 70 transplants a week. During the peak of the pandemic, there were days when there were no referrals, many days when there were no donors, and many days when there were no transplants. As of last week, there have been 167 referrals, 11 donors and 38 transplants. Continuing the tremendous effort to restore all transplant services will enable us to reap the benefits of the deemed consent legislation as soon as possible; by “benefits” I mean save the lives of people waiting for transplants.
I understand that some have disagreed with the timing of going ahead with this law, but we assessed the impact of going ahead with deemed consent very carefully. This horrific pandemic taught us a lot about how precious human life is, and we know that the fight against it will continue for some time, while thousands of people will still be waiting for a transplant. I therefore believe very strongly that we have a duty now, more than ever, to push ahead with measures that will reduce human suffering and help people to improve their quality of life. That is exactly what this law does.
We are of course fully aware that public confidence is important. The deemed consent legislation was first introduced to the House in July 2017, and became law in March 2019, so it has had a long process of parliamentary scrutiny, alongside three public consultations. The Government have been raising awareness of the law and the choices available for over a year, and the 20 May implementation date has been used actively in communications since late February. Putting this legislation on hold would increase the anxiety of thousands of people, who see this law as their only hope to get a new lease of life, and would confuse the communications that have already been in the public domain for some time.
From the outset, we have been clear that deemed consent would apply only for routine transplants, to increase the number of organs and tissues available and help those that are on a waiting list. Examples of routine transplants are heart, kidneys or lungs. Novel transplants will still require express consent. The organs and tissues specified in the regulations are included because they could be used for non-routine transplants, such as a face transplant. Such transplants are outside the scope of what we want to achieve. Demand for novel transplants is very low, and people would not normally identify organ donation with them.
During formal scrutiny of the regulations, the Joint Committee on Statutory Instruments cleared the regulations with no comments. Meanwhile, the Secondary Legislation Scrutiny Committee drew the regulations to the attention of the House, and this is testimony to how integral the regulations are for making the new system of consent work, and how important the law change will be when it is introduced.
Let me now discuss the detail of the regulations. The Organ Donation (Deemed Consent) Act 2019 sets out that deemed consent to transplant activities in England will apply only to permitted material. The Secretary of State has a delegated power to specify in regulations what relevant material—meaning, what organs, tissue and cells—will be excluded from the system of deemed consent. To clarify, the organs, tissues and specific cells that are listed in the draft statutory instrument are organs, tissues and cells that cannot be transplanted without express consent being in place, as that would be a novel transplant.
Regulation 2(2) sets out the detailed list of organs and tissues that will require express consent in order to be transplanted under all circumstances—such as the brain, spinal cord and face. As a result of our consultation, we expanded the list of reproductive organs and tissues in this regulation, to provide clarity and put it beyond doubt that removing any parts of a reproductive organ will require express consent in all cases. This is to ensure that if and when such transplants are carried out in future in the UK, they will be outside the scope of deemed consent.
Regulation 2(3) sets out that some relevant material—for example, skin or bone—will require express consent if used for a novel transplant, but not if used for a routine transplant. This is to ensure that current practices for tissue donation, under which tissue from a leg, for example, is removed routinely, are not disrupted by deemed consent. So, although a leg transplant would require express consent, if only the skin from a leg is taken, deemed consent may apply; however, if tissue is required from reproductive organs, this will always require express consent. That addresses the feedback from our consultation.
Regulation 2(4) allows for the trachea to be removed under deemed consent when it is attached to the lungs. This is to allow routine heart and lung transplants, which also require the trachea to be removed with the heart and lungs, to continue under deemed consent. However, the trachea is also listed in regulation 2(2), as trachea transplants by themselves are novel and therefore excluded from deemed consent.
Regulation 2(5) excludes the removal of certain cells if they are to be used for advanced therapy medicinal products—also known as ATMPs—which are therapies made from tissue cells or genes after manipulation in a laboratory. They are used for treatment of a disease or injury, and often use human tissues and cells as starting materials. For example, an ATMP can treat knee damage by taking cartilage cells from a living patient, growing and modifying them in a lab, and re-injecting them into the patient’s knee.
ATMPs are an exciting technology, and new therapies are being developed all the time. Current ATMPs are being developed using tissue and cells taken from living donors, but it is also possible to use material from deceased donors to develop novel ATMPs. As such ATMPs are novel, we want to make sure that the donation of such cells cannot happen without express consent being in place. Our consultation raised questions about the public’s understanding of such novel technologies, so we want to ensure that express consent is required.
Now that I have set out the detail of the regulations, I must highlight that before deciding whether a change to the regulations would be needed in future, the Government would need to consider evidence, public acceptability and clinical need, guided by recommendations from NHSBT’s advisory group research and innovation in transplants. Any changes would need to be approved by Parliament, following the same procedure as we are now, so Parliament would have full oversight. The regulations restrict deemed consent to routine transplants, so they continue current practice, under which express consent needs to be in place for non-routine transplants. There is no additional cost to the health system, so no impact assessment has been prepared.
In conclusion, I am glad that I am able to present these regulations to the House today. They are an important part of the implementation of the 2019 Act, as they prevent deemed consent from applying to novel transplants. The new system of consent will help to save and improve the lives of many people waiting for a transplant. Donating organs is one of the greatest gifts a person can give. I urge everybody to talk to their families and their loved ones about their wishes. I am proud that all of us present are playing a part in making something positive happen in these very challenging times. I commend the draft regulations to the House.
That the draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020, which were laid before this House on 25 February, be approved.
Before I explain the draft regulations, I would like to say a few words about why we are changing the law on organ donation. Today more than 5,000 people in England are waiting for a transplant, but, sadly, by the time a suitable organ is found some people will have become too ill to receive one. Tragically, last year alone 777 patients were removed from the transplant list and 400 died waiting for a transplant. There is no option but to take decisive action to address the acute shortage of organs and save the lives of those waiting for a transplant. That is why we passed the Organ Donation (Deemed Consent) Act 2019, which amends the Human Tissue Act 2004 and sets up the new system of consent for organ and tissue donation in England, which is known as “deemed consent” or “opt-out”.
I wish to thank the hon. Member for Barnsley Central (Dan Jarvis), my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe), my right hon. Friends the Members for Maidenhead (Mrs May) and for South West Surrey (Jeremy Hunt), a previous Member of this House, Geoffrey Robinson, and Lord Hunt of Kings Heath for their work and support, which has got us to where we are today. They all started this journey for us showing immense leadership, and they continue to show their strong commitment to this cause.
Subject to approval of these regulations, we aim for deemed consent to become legal on 20 May. While not many transplants are taking place earlier, during the peak of covid-19, NHS Blood and Transplant has already started the recovery process to get transplant units up and running as much as possible. Guidance on how best to restart or extend the transplant service was sent by NHSBT to all transplant units on 26 April. A letter was then sent on 1 May to all trusts with transplant units, asking them to actively review the situation where transplant units have reduced their services.
To illustrate the progress that is being made to get the transplant system up and running again, on a normal day NHS Blood and Transplant would have received about 55 referrals of a potential donor and would aim for five actual donors, and it would carry out about 70 transplants a week. During the peak of the pandemic, there were days when there were no referrals, many days when there were no donors, and many days when there were no transplants. As of last week, there have been 167 referrals, 11 donors and 38 transplants. Continuing the tremendous effort to restore all transplant services will enable us to reap the benefits of the deemed consent legislation as soon as possible; by “benefits” I mean save the lives of people waiting for transplants.
I understand that some have disagreed with the timing of going ahead with this law, but we assessed the impact of going ahead with deemed consent very carefully. This horrific pandemic taught us a lot about how precious human life is, and we know that the fight against it will continue for some time, while thousands of people will still be waiting for a transplant. I therefore believe very strongly that we have a duty now, more than ever, to push ahead with measures that will reduce human suffering and help people to improve their quality of life. That is exactly what this law does.
We are of course fully aware that public confidence is important. The deemed consent legislation was first introduced to the House in July 2017, and became law in March 2019, so it has had a long process of parliamentary scrutiny, alongside three public consultations. The Government have been raising awareness of the law and the choices available for over a year, and the 20 May implementation date has been used actively in communications since late February. Putting this legislation on hold would increase the anxiety of thousands of people, who see this law as their only hope to get a new lease of life, and would confuse the communications that have already been in the public domain for some time.
From the outset, we have been clear that deemed consent would apply only for routine transplants, to increase the number of organs and tissues available and help those that are on a waiting list. Examples of routine transplants are heart, kidneys or lungs. Novel transplants will still require express consent. The organs and tissues specified in the regulations are included because they could be used for non-routine transplants, such as a face transplant. Such transplants are outside the scope of what we want to achieve. Demand for novel transplants is very low, and people would not normally identify organ donation with them.
During formal scrutiny of the regulations, the Joint Committee on Statutory Instruments cleared the regulations with no comments. Meanwhile, the Secondary Legislation Scrutiny Committee drew the regulations to the attention of the House, and this is testimony to how integral the regulations are for making the new system of consent work, and how important the law change will be when it is introduced.
Let me now discuss the detail of the regulations. The Organ Donation (Deemed Consent) Act 2019 sets out that deemed consent to transplant activities in England will apply only to permitted material. The Secretary of State has a delegated power to specify in regulations what relevant material—meaning, what organs, tissue and cells—will be excluded from the system of deemed consent. To clarify, the organs, tissues and specific cells that are listed in the draft statutory instrument are organs, tissues and cells that cannot be transplanted without express consent being in place, as that would be a novel transplant.
Regulation 2(2) sets out the detailed list of organs and tissues that will require express consent in order to be transplanted under all circumstances—such as the brain, spinal cord and face. As a result of our consultation, we expanded the list of reproductive organs and tissues in this regulation, to provide clarity and put it beyond doubt that removing any parts of a reproductive organ will require express consent in all cases. This is to ensure that if and when such transplants are carried out in future in the UK, they will be outside the scope of deemed consent.
Regulation 2(3) sets out that some relevant material—for example, skin or bone—will require express consent if used for a novel transplant, but not if used for a routine transplant. This is to ensure that current practices for tissue donation, under which tissue from a leg, for example, is removed routinely, are not disrupted by deemed consent. So, although a leg transplant would require express consent, if only the skin from a leg is taken, deemed consent may apply; however, if tissue is required from reproductive organs, this will always require express consent. That addresses the feedback from our consultation.
Regulation 2(4) allows for the trachea to be removed under deemed consent when it is attached to the lungs. This is to allow routine heart and lung transplants, which also require the trachea to be removed with the heart and lungs, to continue under deemed consent. However, the trachea is also listed in regulation 2(2), as trachea transplants by themselves are novel and therefore excluded from deemed consent.
Regulation 2(5) excludes the removal of certain cells if they are to be used for advanced therapy medicinal products—also known as ATMPs—which are therapies made from tissue cells or genes after manipulation in a laboratory. They are used for treatment of a disease or injury, and often use human tissues and cells as starting materials. For example, an ATMP can treat knee damage by taking cartilage cells from a living patient, growing and modifying them in a lab, and re-injecting them into the patient’s knee.
ATMPs are an exciting technology, and new therapies are being developed all the time. Current ATMPs are being developed using tissue and cells taken from living donors, but it is also possible to use material from deceased donors to develop novel ATMPs. As such ATMPs are novel, we want to make sure that the donation of such cells cannot happen without express consent being in place. Our consultation raised questions about the public’s understanding of such novel technologies, so we want to ensure that express consent is required.
Now that I have set out the detail of the regulations, I must highlight that before deciding whether a change to the regulations would be needed in future, the Government would need to consider evidence, public acceptability and clinical need, guided by recommendations from NHSBT’s advisory group research and innovation in transplants. Any changes would need to be approved by Parliament, following the same procedure as we are now, so Parliament would have full oversight. The regulations restrict deemed consent to routine transplants, so they continue current practice, under which express consent needs to be in place for non-routine transplants. There is no additional cost to the health system, so no impact assessment has been prepared.
In conclusion, I am glad that I am able to present these regulations to the House today. They are an important part of the implementation of the 2019 Act, as they prevent deemed consent from applying to novel transplants. The new system of consent will help to save and improve the lives of many people waiting for a transplant. Donating organs is one of the greatest gifts a person can give. I urge everybody to talk to their families and their loved ones about their wishes. I am proud that all of us present are playing a part in making something positive happen in these very challenging times. I commend the draft regulations to the House.
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?
00:05:03
Alex Norris
Nottingham North
I have to say that I am used to clearing rooms when I start speaking, but this is quite impressive even by my own standards. Nevertheless, it is a privilege to make my debut at the Dispatch Box as shadow public health Minister on a topic as important as this one. Currently, everything we are addressing is a matter of life and death, but when we are talking about critical transplants, that could never be clearer.
I thank the Minister for everything she is doing during this crisis, not only on this particular issue but on everything related to protecting us from the coronavirus. She and her ministerial colleagues are working around the clock and have been doing so for weeks; we appreciate that.
This is my first opportunity to express publicly in this place my thanks to our NHS and social care staff for all the wonderful things that they are doing in my community and communities up and down the country to keep us as safe as possible. We clap with you on a Thursday, but we think about you always and we are really grateful for everything you are doing.
The transplant of organs and human tissue changes and saves lives. It brings hope, it can bring happiness and it is the ultimate altruistic act. The Organ Donation (Deemed Consent) Act 2019 promises a significant breakthrough in the ability to save and change lives. Those who campaigned for it spotted the public mood and understood the British people on this issue. However, a key part of understanding that fundamental desire of the British people to do well by each other is to understand that this change has to hold within reasonable limits. It is therefore right that we are completing the process today and setting out clearly the sort of tissue that goes beyond routine transplantation. That is a critical part of maintaining public confidence in the process.
The Opposition supported the Act during its progress and we support the regulations before us today. We have many people to thank for last year’s Act. I will start by thanking Geoffrey Robinson, the former MP for Coventry North West, for introducing the Bill. His legacy in this place is significant on a number of issues, and this legislation will certainly have long-lasting and far-reaching implications. I also thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for taking up the baton in 2019 and getting the legislation over the finishing line—he continues to be an excellent champion of the Act, and I think we will hear from him shortly—and, in the other place, the noble Lord Hunt for his stewardship of the legislation.
Of course, I also pay tribute to Max Johnson and Keira Ball, after whom the Bill was known. Keira tragically died in a road accident, but her heart saved Max’s life at age nine, after an eight-month wait. They are truly inspirational and a huge part of why we are here today, as indeed is everyone who supported the campaign, not least the Daily Mirror and its readers. Each and every supporter has helped to bring us here today to do this important job.
It is impossible to talk about anything, especially anything health related, without referencing the coronavirus outbreak and its effect on all aspects of our lives. However, it is particularly pertinent when we talk about transplants, so I will touch on it now before getting into the substance of the regulations. From 1 April to 10 May, 155 transplants took place in the UK from deceased donors. In the previous year, that figure was 404, a drop of more than 60%. There have been no transplants at all from living donors, which usually make up close to a fifth of the total, and current waiting list figures will not accurately reflect the need that may have been created for organ transplant due to the pandemic, which will only cause greater strain in future months.
I do not say these things to criticise the Government. Kidney transplants are the most common form of transplants, and in answer to a written question, the Minister for Care shared with me the fact that the early data show that both dialysis patients and those who are immunosuppressed through a transplant are more vulnerable to covid-19. The fact that transplants have been taking place at all therefore suggests that decisions are being made on the balance of need and on a case-by-case basis, an approach that I think we would all support. However, we know that, as the Minister said, patients were dying on the transplant waiting list even before the outbreak because the supply of donor organs failed to meet the demand. Fewer transplants quite simply means that the mortality rate will increase.
What assessment has the Minister made of the impact of covid-19 on the mortality of patients waiting for transplants, and what plans do the Government have to deal with the increasing backlog? I have raised this issue with her colleague, the Minister for primary care and public health, in relation to cancer and have not yet heard clear answers. We need to know what efforts the Government will be making to deal with the bubble challenges that will be coming through the system in future weeks and months. The Minister in the other place talked yesterday about a tremendous effort to restore transplant services. Will this Minister take the opportunity today to outline what the recovery plan is likely to look like and what the timeframes will be?
At the beginning of the coronavirus crisis we all talked of it as a great leveller and said that the virus would not recognise our differences, but we have seen in the weeks and months since just how much that is not the case. The coronavirus has exposed what many Opposition Members have said for many years. Britain is an unequal country, across regions, across gender and across protected characteristics. These inequalities are terrible for our nation’s health, and tackling them must be a post-covid priority.
The black, Asian or minority ethnic community suffers particularly when it comes to transplants. In 2018, 21% of those who died waiting for transplants were from a black, Asian or minority ethnic group. There is a higher chance of a successful transplant if the organ comes from an individual of the same ethnic background, but that means that those from black or Asian backgrounds currently wait six to 11 months longer for an organ match. This inequality will not do, and there have to be practical things to change it, starting immediately. The culture change that the Minister talked about is at the heart of that—us all having those conversations with our loved ones—but we know that we have to be doing something specifically different to reach those communities experiencing the most unequal outcomes. For that reason, I would like to press the Minister on something her colleague in the other place said yesterday. He said that the Government would be following up with an awareness campaign aimed at BAME audiences. Can the Minister give a firm commitment today that this will take place, tell us when it might happen and critically—I had this conversation frequently during my time in local government—confirm that it will be developed by BAME communities, rather than on their behalf? If it is to be effective, it will have to be different from how it has been in the past.
A key aim of the 2019 Act, which the regulations will, I hope, supplement today, was to reach an 80% consent rate in England. This will take time but certainly seems possible. In Wales, where the opt-out mechanism was implemented by the Welsh Labour Government in 2015, the consent rate has risen from 58% to 77%. In England, we start from a base line of 67%, so we are better placed, and if we reach the target, we are talking about as many as 700 more transplants a year—700 lives that can be extended, transformed or saved. The Minister has been challenged on the timing of the regulations—I have reflected on that question myself—but that number seems a strong reason to push on. As she says, the recent weeks and months have shown us how precious human life is and that we should not waste moments if we can improve lives.
Yesterday, the noble Lord Bethell told the other place that the restoration of all transplant services would include training nurses on the new law as soon as possible after they return. I would be keen to know a bit more about that. It was not something we had heard of before, and we would want a sense of the scale of that and the precise timeline the Government are expecting.
As I said, the Opposition are happy with the regulations as laid, but I seek to make three points. First and foremost, we agree that deemed consent should only apply to routine transplants. This is a matter of ensuring that public policy going forward matches the public’s expectation. I share the Government’s view that this would not reflect rare or novel procedures, including to create advanced therapy medicinal products, taking place without explicit consent. I will reflect on those ATMPs in a couple of seconds.
Secondly, I welcome the Government’s response to the consultation on the statutory instrument. Following the responses received, they have rightly revised the regulations with additional clarifications on tissues from sexual and reproductive organs, which will not be subject to deemed consent. That is particularly welcome. It is nice—I dare say even novel—to see a Government consultation leading to such concrete changes. It is a good thing and long may it continue.
Thirdly, the Government indicated in their response to the consultation that they do not expect the list of accepted tissue to need regular updates, and I agree with that in principle. The Minister mentioned how a process might happen if things were to be revised later, but I would like to understand a bit more about what would have to change for her to start such a process.
On those rare and novel transplants, it is important that public policy matches what people expect from the legislation, but we should be proud that the UK leads the world on such transplants. It is a good sign of the health of our country in this regard. They are not currently included under deemed consent, but developing these new technologies and techniques enables us to save more lives. We lead the way in both development and implementation. We have pioneered the OCS—organ care service—heart system, a portable device that can preserve a donor heart in a near-normothermic beating state until it is transplanted, which is currently being used in three heart transplant centres in the NHS and is being introduced in a fourth. We have also shown that abdominal organs can be assessed and their function improved using normothermic regional perfusion technology. As is the aim with this legislation, these developments can save lives, and we should be proud of that, but we should not rest on our laurels, so could the Minister reaffirm the Government’s commitment to continuing the UK as a leader in this regard and to providing the necessary funding to transplant units to ensure they can take advantage?
I turn now to resources, because what we are agreeing today, though very important, will have resource implications for us to pick up. An increase in the number of transplants will necessitate increased support for families who lose loved-ones. It is a difficult and emotional experience for them, and they will require high-skilled care and support, so what extra support will be available for them as these numbers increase?
Similarly, we will need specialist nurses for donation, not just for the direct care but for the implementation, providing advice and support to families and playing the vital role of determining what the deceased’s last known decision was, so that no procedures take place without the appropriate consent. As I say, the Minister in the other place yesterday mentioned specialist training. Could the Minister here today expand further on that?
I welcome the Government’s commitment to ensure that there are enough staff to do this. Will the Minister also commit to providing the additional funding required to ensure that the required increase in specialist nurses continues in line with the increase in transplants, so that they are not having to be begged or borrowed from other parts of the service?
We support these regulations. This is the next staging point in a really important journey. It will make a difference to hundreds and hundreds of lives—lives of people who are completely unaware that these discussions are even taking place today, not knowing that they will need this. This is the right thing to do and the right time to do it, and we support the regulations.
I thank the Minister for everything she is doing during this crisis, not only on this particular issue but on everything related to protecting us from the coronavirus. She and her ministerial colleagues are working around the clock and have been doing so for weeks; we appreciate that.
This is my first opportunity to express publicly in this place my thanks to our NHS and social care staff for all the wonderful things that they are doing in my community and communities up and down the country to keep us as safe as possible. We clap with you on a Thursday, but we think about you always and we are really grateful for everything you are doing.
The transplant of organs and human tissue changes and saves lives. It brings hope, it can bring happiness and it is the ultimate altruistic act. The Organ Donation (Deemed Consent) Act 2019 promises a significant breakthrough in the ability to save and change lives. Those who campaigned for it spotted the public mood and understood the British people on this issue. However, a key part of understanding that fundamental desire of the British people to do well by each other is to understand that this change has to hold within reasonable limits. It is therefore right that we are completing the process today and setting out clearly the sort of tissue that goes beyond routine transplantation. That is a critical part of maintaining public confidence in the process.
The Opposition supported the Act during its progress and we support the regulations before us today. We have many people to thank for last year’s Act. I will start by thanking Geoffrey Robinson, the former MP for Coventry North West, for introducing the Bill. His legacy in this place is significant on a number of issues, and this legislation will certainly have long-lasting and far-reaching implications. I also thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for taking up the baton in 2019 and getting the legislation over the finishing line—he continues to be an excellent champion of the Act, and I think we will hear from him shortly—and, in the other place, the noble Lord Hunt for his stewardship of the legislation.
Of course, I also pay tribute to Max Johnson and Keira Ball, after whom the Bill was known. Keira tragically died in a road accident, but her heart saved Max’s life at age nine, after an eight-month wait. They are truly inspirational and a huge part of why we are here today, as indeed is everyone who supported the campaign, not least the Daily Mirror and its readers. Each and every supporter has helped to bring us here today to do this important job.
It is impossible to talk about anything, especially anything health related, without referencing the coronavirus outbreak and its effect on all aspects of our lives. However, it is particularly pertinent when we talk about transplants, so I will touch on it now before getting into the substance of the regulations. From 1 April to 10 May, 155 transplants took place in the UK from deceased donors. In the previous year, that figure was 404, a drop of more than 60%. There have been no transplants at all from living donors, which usually make up close to a fifth of the total, and current waiting list figures will not accurately reflect the need that may have been created for organ transplant due to the pandemic, which will only cause greater strain in future months.
I do not say these things to criticise the Government. Kidney transplants are the most common form of transplants, and in answer to a written question, the Minister for Care shared with me the fact that the early data show that both dialysis patients and those who are immunosuppressed through a transplant are more vulnerable to covid-19. The fact that transplants have been taking place at all therefore suggests that decisions are being made on the balance of need and on a case-by-case basis, an approach that I think we would all support. However, we know that, as the Minister said, patients were dying on the transplant waiting list even before the outbreak because the supply of donor organs failed to meet the demand. Fewer transplants quite simply means that the mortality rate will increase.
What assessment has the Minister made of the impact of covid-19 on the mortality of patients waiting for transplants, and what plans do the Government have to deal with the increasing backlog? I have raised this issue with her colleague, the Minister for primary care and public health, in relation to cancer and have not yet heard clear answers. We need to know what efforts the Government will be making to deal with the bubble challenges that will be coming through the system in future weeks and months. The Minister in the other place talked yesterday about a tremendous effort to restore transplant services. Will this Minister take the opportunity today to outline what the recovery plan is likely to look like and what the timeframes will be?
At the beginning of the coronavirus crisis we all talked of it as a great leveller and said that the virus would not recognise our differences, but we have seen in the weeks and months since just how much that is not the case. The coronavirus has exposed what many Opposition Members have said for many years. Britain is an unequal country, across regions, across gender and across protected characteristics. These inequalities are terrible for our nation’s health, and tackling them must be a post-covid priority.
The black, Asian or minority ethnic community suffers particularly when it comes to transplants. In 2018, 21% of those who died waiting for transplants were from a black, Asian or minority ethnic group. There is a higher chance of a successful transplant if the organ comes from an individual of the same ethnic background, but that means that those from black or Asian backgrounds currently wait six to 11 months longer for an organ match. This inequality will not do, and there have to be practical things to change it, starting immediately. The culture change that the Minister talked about is at the heart of that—us all having those conversations with our loved ones—but we know that we have to be doing something specifically different to reach those communities experiencing the most unequal outcomes. For that reason, I would like to press the Minister on something her colleague in the other place said yesterday. He said that the Government would be following up with an awareness campaign aimed at BAME audiences. Can the Minister give a firm commitment today that this will take place, tell us when it might happen and critically—I had this conversation frequently during my time in local government—confirm that it will be developed by BAME communities, rather than on their behalf? If it is to be effective, it will have to be different from how it has been in the past.
A key aim of the 2019 Act, which the regulations will, I hope, supplement today, was to reach an 80% consent rate in England. This will take time but certainly seems possible. In Wales, where the opt-out mechanism was implemented by the Welsh Labour Government in 2015, the consent rate has risen from 58% to 77%. In England, we start from a base line of 67%, so we are better placed, and if we reach the target, we are talking about as many as 700 more transplants a year—700 lives that can be extended, transformed or saved. The Minister has been challenged on the timing of the regulations—I have reflected on that question myself—but that number seems a strong reason to push on. As she says, the recent weeks and months have shown us how precious human life is and that we should not waste moments if we can improve lives.
Yesterday, the noble Lord Bethell told the other place that the restoration of all transplant services would include training nurses on the new law as soon as possible after they return. I would be keen to know a bit more about that. It was not something we had heard of before, and we would want a sense of the scale of that and the precise timeline the Government are expecting.
As I said, the Opposition are happy with the regulations as laid, but I seek to make three points. First and foremost, we agree that deemed consent should only apply to routine transplants. This is a matter of ensuring that public policy going forward matches the public’s expectation. I share the Government’s view that this would not reflect rare or novel procedures, including to create advanced therapy medicinal products, taking place without explicit consent. I will reflect on those ATMPs in a couple of seconds.
Secondly, I welcome the Government’s response to the consultation on the statutory instrument. Following the responses received, they have rightly revised the regulations with additional clarifications on tissues from sexual and reproductive organs, which will not be subject to deemed consent. That is particularly welcome. It is nice—I dare say even novel—to see a Government consultation leading to such concrete changes. It is a good thing and long may it continue.
Thirdly, the Government indicated in their response to the consultation that they do not expect the list of accepted tissue to need regular updates, and I agree with that in principle. The Minister mentioned how a process might happen if things were to be revised later, but I would like to understand a bit more about what would have to change for her to start such a process.
On those rare and novel transplants, it is important that public policy matches what people expect from the legislation, but we should be proud that the UK leads the world on such transplants. It is a good sign of the health of our country in this regard. They are not currently included under deemed consent, but developing these new technologies and techniques enables us to save more lives. We lead the way in both development and implementation. We have pioneered the OCS—organ care service—heart system, a portable device that can preserve a donor heart in a near-normothermic beating state until it is transplanted, which is currently being used in three heart transplant centres in the NHS and is being introduced in a fourth. We have also shown that abdominal organs can be assessed and their function improved using normothermic regional perfusion technology. As is the aim with this legislation, these developments can save lives, and we should be proud of that, but we should not rest on our laurels, so could the Minister reaffirm the Government’s commitment to continuing the UK as a leader in this regard and to providing the necessary funding to transplant units to ensure they can take advantage?
I turn now to resources, because what we are agreeing today, though very important, will have resource implications for us to pick up. An increase in the number of transplants will necessitate increased support for families who lose loved-ones. It is a difficult and emotional experience for them, and they will require high-skilled care and support, so what extra support will be available for them as these numbers increase?
Similarly, we will need specialist nurses for donation, not just for the direct care but for the implementation, providing advice and support to families and playing the vital role of determining what the deceased’s last known decision was, so that no procedures take place without the appropriate consent. As I say, the Minister in the other place yesterday mentioned specialist training. Could the Minister here today expand further on that?
I welcome the Government’s commitment to ensure that there are enough staff to do this. Will the Minister also commit to providing the additional funding required to ensure that the required increase in specialist nurses continues in line with the increase in transplants, so that they are not having to be begged or borrowed from other parts of the service?
We support these regulations. This is the next staging point in a really important journey. It will make a difference to hundreds and hundreds of lives—lives of people who are completely unaware that these discussions are even taking place today, not knowing that they will need this. This is the right thing to do and the right time to do it, and we support the regulations.
Taiwo Owatemi
Coventry North West
I would first like to pay tribute to my predecessor, the former Member for Coventry North West, Geoffrey Robinson, whose life-saving private Member’s Bill will lead to significant changes in the way we approach organ donation. Geoffrey has said that it was one of his proudest achievements, and I am sure that Members across the House will join me in wishing him well in his retirement.
Through the hard work and determination of campaigners and Members from across the House and the support of the Government, the Organ Donation (Deemed Consent) Act is now law. I commend the Daily Mirror for its awareness campaign and for raising support for Max Johnson, a young boy who desperately needed a new heart, whose story touched so many of us. Keira and Max’s story showed the many human sides of the campaign to bring about the change in the law.
The NHS estimates that 3,544 people are awaiting a transplant in the UK today, and in the last month, 186 have received a transplant. Too many lives have been tragically cut short because donors were not available, or the transplant was not received in time. However, we are lucky that science has allowed organ transplantation to overcome technical limitations and become the life-saving success it is today.
From tomorrow, the new opt-out system in England will provide a lifeline for hundreds of people desperately in need of a transplant. Indeed, with this change, more people will receive a vital organ to reunite them with their loved ones and allow them, in most cases, to lead an ordinary life. Of course, there are legitimate concerns about the timing of this change, patient safety and whether we should allow an opt-out in the midst of an epidemic. It is fair to say that no one saw this coming, at least not to this extent. But for many patients who have been on the waiting lists for a kidney or another vital organ, the change could not come any sooner.
As the Minister said, and as my hon. Friend the Member for Nottingham North (Alex Norris) emphasised, patient safety must come first. Those with symptoms of coronavirus or any other life-threatening impediment will need to be sifted out. I seek further reassurances from the Minister that extra precautions are in place to reassure my constituents that any organ transplant conducted during this time will be appropriately screened. If confidence is lost in this new system, vital donors from a wide range of groups may be lost because they do not feel safe.
We must understand that some communities are apprehensive about the donation of their organs, which can be due to cultural and religious sensitivities around the displacement of organs from the body. There is also a low uptake among ethnic minorities with particular blood types. The NHS estimates that over 1,800 black, Asian and ethnic minorities are currently on the waiting list for a transplant. Last year, 900 ethnic minorities received a donation from a deceased donor, and only 114 ethnic minorities donated their organs after they had passed away. The sad truth is that ethnic minorities tend to wait significantly longer for a successful match than other patients. In the light of tomorrow’s change in the law, more awareness building needs to be done, to emphasise the importance of organ donation within ethnic minority communities. Although those numbers will naturally rise, it is important that the Government do more to encourage vital donors to stay on the list.
Tomorrow’s change in the law is a welcome and long- overdue step. It was a hard-fought campaign and an example of the House coming together, and I will continue to champion this issue, like my predecessor. Overall, this is for the hundreds of people awaiting transplants across England who will receive a life-changing and life-saving transplant that will allow them to live their lives.
Through the hard work and determination of campaigners and Members from across the House and the support of the Government, the Organ Donation (Deemed Consent) Act is now law. I commend the Daily Mirror for its awareness campaign and for raising support for Max Johnson, a young boy who desperately needed a new heart, whose story touched so many of us. Keira and Max’s story showed the many human sides of the campaign to bring about the change in the law.
The NHS estimates that 3,544 people are awaiting a transplant in the UK today, and in the last month, 186 have received a transplant. Too many lives have been tragically cut short because donors were not available, or the transplant was not received in time. However, we are lucky that science has allowed organ transplantation to overcome technical limitations and become the life-saving success it is today.
From tomorrow, the new opt-out system in England will provide a lifeline for hundreds of people desperately in need of a transplant. Indeed, with this change, more people will receive a vital organ to reunite them with their loved ones and allow them, in most cases, to lead an ordinary life. Of course, there are legitimate concerns about the timing of this change, patient safety and whether we should allow an opt-out in the midst of an epidemic. It is fair to say that no one saw this coming, at least not to this extent. But for many patients who have been on the waiting lists for a kidney or another vital organ, the change could not come any sooner.
As the Minister said, and as my hon. Friend the Member for Nottingham North (Alex Norris) emphasised, patient safety must come first. Those with symptoms of coronavirus or any other life-threatening impediment will need to be sifted out. I seek further reassurances from the Minister that extra precautions are in place to reassure my constituents that any organ transplant conducted during this time will be appropriately screened. If confidence is lost in this new system, vital donors from a wide range of groups may be lost because they do not feel safe.
We must understand that some communities are apprehensive about the donation of their organs, which can be due to cultural and religious sensitivities around the displacement of organs from the body. There is also a low uptake among ethnic minorities with particular blood types. The NHS estimates that over 1,800 black, Asian and ethnic minorities are currently on the waiting list for a transplant. Last year, 900 ethnic minorities received a donation from a deceased donor, and only 114 ethnic minorities donated their organs after they had passed away. The sad truth is that ethnic minorities tend to wait significantly longer for a successful match than other patients. In the light of tomorrow’s change in the law, more awareness building needs to be done, to emphasise the importance of organ donation within ethnic minority communities. Although those numbers will naturally rise, it is important that the Government do more to encourage vital donors to stay on the list.
Tomorrow’s change in the law is a welcome and long- overdue step. It was a hard-fought campaign and an example of the House coming together, and I will continue to champion this issue, like my predecessor. Overall, this is for the hundreds of people awaiting transplants across England who will receive a life-changing and life-saving transplant that will allow them to live their lives.
Dan Jarvis
Barnsley Central
[Inaudible.]
Mr Nigel Evans
Mr Deputy Speaker
We have no audio, so we will go to Jim Shannon while we check that out.
00:02:08
Jim Shannon
Strangford
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 it 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.
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 it 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 Nigel Evans
Mr Deputy Speaker
Thank you, Jim Shannon. We will now try again with Dan Jarvis—can we hear you?
00:07:11
Dan Jarvis
Barnsley Central
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.
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 Nigel Evans
Mr Deputy Speaker
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.
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 Nigel Evans
Mr Deputy Speaker
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.
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.
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