Friday 23rd February 2018
(6 years, 9 months ago)
Commons ChamberOrgan Donation (Deemed Consent) Act 2019 Read Hansard Text
This text is a record of ministerial contributions to a debate held as part of the Organ Donation (Deemed Consent) Act 2019 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
Mr Virendra Sharma (Ealing, Southall) (Lab)
Thank you, Madam Deputy Speaker, for giving me the opportunity to speak in this very important debate. I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on bringing this Bill forward in the Chamber and on raising our awareness of the issue. I also thank and congratulate my colleague, my hon. Friend the Member for Sunderland Central (Julie Elliott), on her very emotional, personal and courageous contribution to the debate. I am quite confident that the public and Members will have taken note of it.
Others have spoken at length about the importance of raising donation rates. I have my own personal reasons for supporting the move: my younger brother has been waiting for more than five years for somebody, somewhere, to donate a kidney. He has dialysis four times a week. Another very close personal friend is also going through the same difficult times. Therefore, I have those reasons for supporting the Bill, as well as my own personal views, and a moral commitment to the cause.
As many colleagues have said, more than 6,000 people are still actively waiting for a transplant in the UK. Three people die every day because they cannot get the transplant that they need, ruining family lives across the country. Over the past 10 years, the number of donors has increased by 75%, which is fantastic and has saved countless lives, but there is still a great shortage both in the UK and—as we are a global community—internationally as well. If we go to any country, we are asked, “What are you doing in this field?” I am glad that, once again, Britain is leading in this field, so that the rest of the world can learn and pick up its ideas from here.
Only a third of eventual donors are registered to donate at the time of their death, and this number is even lower among the black, Asian and minority ethnic communities. BAME patients fare far worse than other patients. They will, on average, wait six months longer for a transplant than a white patient. I do apologise if my language is not politically correct, but for convenience, I will use black and white in this case. BAME people face the struggle of comparatively rare blood and tissue types and compatible organs. Although the overall number of donors has increased by 75%, BAME donations have only increased by less than 7%—a fraction of the rate for white people—and that has translated directly into deaths.
There is still a problem with public education and awareness. The families of minority populations are also less likely to consent to organ donation when asked after death: 64% of BAME families refuse permission for donation compared with only 43% for the rest of the population. An opt-out system rather than an opt-in system will increase the likelihood that donors of the same blood and tissue types are available to members of the BAME community. Increasing the number of compatible organs on the transplant list could save thousands of lives each year.
The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)
I thank the hon. Gentleman for giving way. He is making some extremely important points in his speech, and they are ones that I am particularly conscious of and really want to tackle. Let me amplify some of his points: of the 6,400 people on the waiting list, more than a 1,000 are from Asian backgrounds and 800 are black. I just wish to endorse his point that, in terms of racial fairness, we really need to increase donation from those parts of the community.
Mr Sharma
I am glad and thankful for the Minister’s very positive intervention and for the information that she has provided to Members in the Chamber. Activist groups and campaigners, such as the National BAME Transplant Alliance, support the move to an opt-out system, because it will ultimately save more lives across our diverse country.
The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)
I thank the hon. Member for Coventry North West (Mr Robinson) for bringing this Bill to the House; he has secured his fortunate position in the ballot and used it constructively. I am therefore grateful to him and confirm that the Government will give his Bill our wholehearted support. It has been an absolute pleasure to work with him and the hon. Member for Barnsley Central (Dan Jarvis) and to get to the place we are in now, having a Bill we can all support. The reason why we are here, in a relatively painless way given our discussions, is that we were all focused on the shared objective of saving lives and securing the availability of more organs for donation. I am extremely grateful to him, and I wish the Bill Godspeed and hope that it gets on to the statute book as soon as possible.
We have heard some moving stories today, and I want to make particular reference to my hon. Friend the Member for North Devon (Peter Heaton-Jones), who talked about the bravery of Keira Ball, who has saved four lives. I shall say a little more about that later. I also want to thank the hon. Member for Sunderland Central (Julie Elliott), who spoke movingly about her daughter. The real thing about this subject is that once we hear the human stories about people who have given organs, consented to their relatives doing so when they have been bereaved, witnessed family members needing an organ or indeed been a live donor, we cannot fail to be touched by their experiences. It is certainly with considerable commitment that I will do my bit to ensure that more organs become available for donation.
Mark Tami
I have spoken briefly about my own experience with my son, who was able to get a stem cell donor. We were in hospital for quite some time, and I saw many parents who did not find a donor. That was very difficult, and, to be frank, I felt a degree of guilt because we were fortunate and I knew that I was looking at someone whose child was going to die. That is a heartbreaking situation, and we need to do whatever we can to ensure that more people get on to the register and donate organs.
Jackie Doyle-Price
The hon. Gentleman puts that as well as it could possibly be expressed. That is entirely the motivation behind the Bill. We are losing too many people each year because they need organs, and it would be a poor Health Minister who did not do their best to remedy that. He is absolutely right to describe the very real impact when we see people in that situation. I have been on my own journey with my constituent, who has already been mentioned by the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). My constituent painfully lost her daughter, who was waiting for a transplant, and she has used that experience to campaign for this important cause. She has also taken the step of becoming an altruistic donor herself. Who could fail to be inspired by such a story? I am pleased to be able to deliver on the promise that I made to Patricia, when she came to see me for the first time, that I would do everything I could to secure more organ donations. And here we are today, delivering that.
Last October, the Prime Minister pledged her personal support to change the law on organ donation and, in doing so, to help more people across the country to achieve an organ transplant. We should also remember the contribution of Max Johnson, whose struggle was embraced by the nation and who has done so much to highlight this important cause. As a consequence, we in the Government will be referring to this legislation as Max’s law, and we will do everything we can to ensure its passage. In that regard, I am grateful for the Opposition’s support, which will ensure that it has a speedy passage. With such cross-party commitment, we should not fail. As Max, his family and families all over the country who have experienced life on the transplant waiting list know, organ donation is a precious gift, and the family of Keira Ball deserve our special tribute. The fact that she has saved four lives is incredibly inspirational.
I want to echo the tributes that have been paid to the Daily Mirror. We do not often talk about national newspapers in a complimentary way in this House, but the Daily Mirror has done a fantastic job of highlighting this cause. This illustrates what the press can achieve when it puts its mind to something positive. I echo the tribute paid to “Coronation Street” by the hon. Member for Washington and Sunderland West (Mrs Hodgson). Like her, I am pretty addicted to the soaps, and we should not leave out “EastEnders”, which highlighted live liver transplantation last year. She was right to say that the soap operas have also been good at highlighting mental health, but it is particularly apposite that we have seen the organ donation story this week. I commend “Coronation Street” for tweeting a link to the Government consultation in the immediate wake of that programme, which I think is a first. It would be helpful if soap operas highlighted future Government consultations, but I do not think it will be common.
I will be fairly brief in addressing some of the points that have been raised. A number of Members expressed concern about moving from an opt-in system to an opt-out system, and I reassure them that the concept of organ donation being a gift voluntarily given by the donor remains central to the Bill’s principles. There can be no question of the state taking control of organs, which is why the ability to opt out is central to the Bill. Opting out will have to be made extremely easy, and people will have to be able to continually revisit their decision if they wish to change their mind.
It is also central to the Bill that family consent is respected. The circumstance in which someone is able to donate their organs is clearly traumatic and difficult. In considering the whole period at the end of life and the struggle that surgeons are undertaking to save lives, it is important that we are sensitive about that time. We need to be sure that, once someone has lost the capacity to give consent, their family, as next of kin, have their rights protected. I have no doubt that we will explore some of those issues in Committee.
I put on record the representations I have had from the medical establishment, which would feel uncomfortable if consent were not sought from the family. In developing a regime that secures more organs but is also sensitive to everybody’s views, we are able to strike the right balance in the Bill.
Tom Pursglove (Corby) (Con)
I entirely support the Bill. Has the Department given any early thought to public engagement, so that people are aware of any changes coming into force and of what those changes mean?
Jackie Doyle-Price
My hon. Friend will be aware that we are consulting on the principles enshrined in this Bill. That consultation will end on 6 March, and we will reflect on those representations. As we have already heard, we are seeing an unprecedented response to the consultation, and there is a substantial degree of support. The consultation will inform our communications.
We have also heard a lot about the high incidence of people from Asian and black backgrounds on the waiting list, and again that is a priority for the Government. The hon. Member for Ealing, Southall (Mr Sharma) said MPs should show leadership. We are leaders, and it is certainly something that I want to do. I have a large black African community in my constituency that I am engaging with on this issue. With that in mind, I have tasked NHS Blood and Transplant to develop MP toolkits that we can all use to go out into the community to sell the concept of organ donation. As and when those toolkits are available, I hope to have support from many Members in rolling out that communication.
Mr Pat McFadden (Wolverhampton South East) (Lab)
Will the Minister give way?
Jackie Doyle-Price
I would like to make progress, so I will take no more interventions.
As I have made clear, we support the Bill and are determined to secure more organs for transplant, because we are concerned that we are losing lives unnecessarily. People have referred to the experience in Wales and whether the learning from that will achieve a material difference. At this stage, it is too early to draw any conclusions about the number of organs that the change in Wales has secured, but we have seen an increase in consent and opting on to the register. Our best estimates are that the change will secure an additional 100 donors a year, which could lead to the saving of 200 extra lives.
Jackie Doyle-Price
I will take no more interventions.
On the basis that we could save 200 lives, we wholeheartedly support the Bill. I look forward to working with all Members to secure Royal Assent.
Wednesday 12th September 2018
(6 years, 2 months ago)
Public Bill CommitteesOrgan Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
This text is a record of ministerial contributions to a debate held as part of the Organ Donation (Deemed Consent) Act 2019 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
Dame Cheryl Gillan (Chesham and Amersham) (Con)
Mr Wilson, it is a pleasure to serve under your chairmanship. I rise to support the amendments in the names of the hon. Member for Coventry North West and the Minister.
I rise only briefly to say that I am a convert. Originally, when I was Secretary of State for Wales, I was not convinced that an opt-out system would be beneficial. I have changed my mind; when the facts change, one should, as a politician, change one’s mind. One of the things that has changed my mind is personal contact with a family where an organ will be needed to save a young man’s life. There is nothing more powerful than having that presented to one as a politician. That means that all of us must have an open mind about so many things.
The way the trend has been going, particularly in Europe, is interesting. I think now more than 24 countries in Europe have some form of opt-out system. Although we have not yet really seen the benefits in Wales of the legislation that came in in December 2015, I frankly think that we need to improve the mathematical odds. We will do so only by creating a culture in which organ donation is spoken about, not in hushed tones or with accompanying difficulty, so that it becomes part of the common parlance.
The testimonies given by other Members in Committee show that the fact that a loved one may go, but parts of that loved one can contribute to saving or enhancing the lives of others, has to be a good thing. I support the amendments and hope the Bill gets a very fair wind so that it becomes law.
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
It is a pleasure to serve under your chairmanship, Mr Wilson, and with colleagues across the Committee. Without exception, everyone in the room has been a passionate advocate for organ donation. I am grateful for all the efforts made to promote this important procedure and movement.
With your indulgence, Mr Wilson, I would like to reflect on some of the comments made by members of the Committee before I address the amendments in detail. The Government fully support the Bill and are grateful to the hon. Member for Coventry North West for promoting it. The amendments are a tidying-up exercise and I put my name to them.
Mr Khalid Mahmood (Birmingham, Perry Barr) (Lab)
I thank the Minister for making that point. Under the current system, when people have a donation card, it is still the responsibility of the next of kin to make the decision to donate. In most instances, that decision is not made. Therefore, the value of that card is not upheld.
Jackie Doyle-Price
The hon. Gentleman makes a good point. One of the difficulties in making legislation such as this, where things are put very clearly on the statute book, is that we must have regard to what really happens at the bedside. It is one thing for something to be written in law, but how do relatives losing a loved one in the most atrocious circumstances deal with this? It comes back to a cultural change. The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes. Let us put ourselves in the position of being at the bedside of a loved one who is losing their life. We can put all the support in place—specialist nurses to talk them through the process and so on—but unless families really understand their loved one’s wishes and have had that conversation, naturally the next of kin will be reticent to give consent. One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense.
The hon. Member for Strangford also shared his experience, for which I am grateful, and reiterated that no one would be compelled. Finally, my right hon. Friend the Member for Chesham and Amersham was, as always, wise in her observation that, when the facts change, people should change their minds. It is not a weakness if politicians do so from time to time. I am grateful to all Committee members for their support.
The amendments constitute a tidying-up exercise that essentially make it clear that we are talking about organ transplantation. Their effect would be to remove novel transplants—such as hand and uterine transplants—from the scope of the Bill. The medical advances that allow such transplants are amazing, but in order that the law keeps pace with those developments, we need to make those exemptions and state that we really are only talking about organs. Amendment 7 amends the long title of the Bill to better describe what the Bill will do.
Most points around the Bill have already been made, but I will touch on some of the procedural issues that will flow from it. We expect a rise in the number of organ transplants as a consequence of this legislation, because more organs will be available. We could estimate that, and it could be anything from one to 700, but even one extra life is enough for me. However, I am confident that it will be much more than that. We will also have to put in place the register and the mechanics around it and publicise the changes. Following the Bill’s passage to becoming an Act—touch wood—we are looking at an implementation period of a year before everything is completely nailed down, enshrined and operational.
There has been lots of talk about the role of families. Ultimately, families will clearly wish to have a role in the welfare of a person who lacks the capacity to make a decision after deciding to be a donor. We need a system that takes families with us on this. We are sensitive to people’s faiths and beliefs, and that will all be considered as part of the wraparound care that we will put in place. We will obviously undertake further discussions with the Welsh Government to see how far we can learn from their experiences. By the time the Bill’s passage is complete, we will essentially have the same legal structure across Wales, England and Scotland.
I have talked about novel transplants, and clearly we will have the power to alter the regulations if other kinds of transplantation become possible over time. This legal framework should therefore be future-proof and able to react to changes in medical practice.
The hon. Gentleman ably spoke to the amendments. I do not have much more to say, other than that this is an extremely valuable piece of legislation. As a Health Minister, I have been given a wonderful tool to help us to save lives. It has been an absolute pleasure to work with all Committee members and to achieve this change one way or another. I look forward to seeing the Bill on the statute book. Everybody here, who has fought so much for these measures, can be extremely proud.
Mr Robinson
So many generous words have been extended in my direction that I feel that some redressing of the balance is necessary. I was lucky, and I hope I chose my Bill well. Judging by the support we have had through all its stages, it seems as though there is a groundswell of approval, opinion and acclamation for it, but one thing must not be overlooked, and that is that the Bill would have been very difficult if not impossible but for the support of the Government, including the Prime Minister in person. Throughout this, she has stuck to what she said in Liverpool.
I must also say that there have been tight moments, awkward moments, but the presence of the Minister with responsibility for the Bill, who is with us today, has throughout been one of charm—a smoother who, with her grace, has been able to get us through those moments too. She said it had been a pleasure to work with the Health Committee and it has indeed, and it has been a great pleasure to work with the Minister.
We keep saying these things, but perhaps we should cut down on further compliments to each other until we get the Bill through the Lords. On that basis, we are all in this together and still working hard, because we are not there yet, and who knows what the Lords will throw at us—
Organ Donation (Deemed Consent) Bill (Money)
(Limited Text - Ministerial Extracts only)
Read Full debateTuesday 11th September 2018
(6 years, 2 months ago)
Commons ChamberOrgan Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
This text is a record of ministerial contributions to a debate held as part of the Organ Donation (Deemed Consent) Act 2019 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
I beg to move,
That, for the purposes of any Act resulting from the Organ Donation (Deemed Consent) Bill, it is expedient to authorise the payment out of money provided by Parliament of any increase attributable to the Act in the sums payable under any other Act out of money so provided.
I am pleased to say that the Government fully support this Bill, which has been ably promoted by the hon. Member for Coventry North West (Mr Robinson), who I congratulate on his fantastic efforts to build cross-party support for this significant piece of legislation, as evidenced by the attendance this evening, well past home time.
Friday 26th October 2018
(6 years ago)
Commons ChamberOrgan Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
This text is a record of ministerial contributions to a debate held as part of the Organ Donation (Deemed Consent) Act 2019 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
It really is a pleasure to confirm the Government’s support for this important measure from the Dispatch Box today. I join other Members in sending my good wishes to the hon. Member for Coventry North West (Mr Robinson), who has been the driving force behind the Bill, and I am grateful to him for choosing this as the subject of his private Member’s Bill, because it will save lives. I also want to thank the hon. Member for Barnsley Central (Dan Jarvis), who actually began this journey for me with his Westminster Hall debate on the subject, which took place before we launched the campaign to take this Bill ahead. This has been quite a journey for us, and it has been a pleasure to work with him and the hon. Member for Coventry North West. They have made it very easy for me to work with them; we were all very focused on the outcome that we were trying to achieve, which was to save more lives, and we have approached the matter practically and pragmatically. I wish the Bill Godspeed to the other place, from where I hope it will emerge unscathed to take its place on the statute book very soon. I shall certainly be saying my prayers to ensure that it does so.
Lots of colleagues mentioned the debt that we owe to Trinity Mirror for a campaign that captured the public’s imagination, and we are grateful to Max and his family for their role in it. However, we cannot thank the family of Keira Ball enough, and my hon. Friend the Member for North Devon (Peter Heaton-Jones) has been fantastic at telling their story. One of the joys of doing this job—I always feel inadequate and utterly humbled—is meeting donor families. It is great to have the hon. Member for Birmingham, Perry Barr (Mr Mahmood) here, because we should not forget live donors and their altruism. It is incredible that people will make such donations voluntarily and, it must be said, at great personal risk. Giving the gift of life is something that donors and their families should be proud of, and I never fail to be inspired by those stories. We think today not only of those who benefit from organ transplants and those on the waiting list—we hope to be able to save more of them—but of donors and their families, without whom we would not be having this debate. I thank them all.
The real objective of this Bill is to ensure that we improve the chances of the thousands of people who are desperately waiting for a transplant. Again, I totally associate myself with the comments of the hon. Member for Barnsley Central when he introduced the Bill, because it will not achieve the degree of change that we want on its own, but one of the happy advantages of this Bill and of the Daily Mirror’s campaign is that we have raised awareness of organ donation. Such things were rare 40 years ago, but donation has almost become so commonplace that people may think, “That is somebody else’s problem. I don’t need to worry about registering my preference. Somebody else will do it. There isn’t the need.” Well, there is a huge need. We also need to remind people that dialysis is a life-saving process, but it is not nice. We have become desensitised to just how challenging such illnesses are.
The Bill provides us with a fantastic opportunity to raise awareness of the whole organ donation issue, which I have been pushing NHSBT to take full advantage of, and I am pleased to say that it has. We will obviously have to build on that progress as the Bill moves forward. My hon. Friend the Member for North Devon pressed me on that, and if the hon. Member for Coventry North West was here, he would have done the same. I can tell the House that we will be investing £18 million over the next three years to raise awareness of the new scheme and to encourage people to register their wishes and have conversations with their families, which is by far the most important thing. There will be £18 million over the first three years, but ongoing communication to raise awareness will very much be part of how we take things forward.
If Members and anyone watching today have not had that conversation with loved ones about their wishes in the event of their death, please have it. The last thing we want is for loved ones, in the unhappy event of a loss of a life, to be put into a position where they have to make a judgment not knowing the true wishes. We have heard how people have approached that and doing so is immensely brave. I sometimes hear from donor families that the decision was easy because they had had that conversation, and I cannot repeat that message often enough.
I associate myself with the comments of the hon. Member for Barnsley Central when he said that the Bill is not about the state taking control of people’s organs. Organ donation is a gift, and that is a fundamental principle of the Bill. We are altering the basis on which people’s wishes can be expressed, which will have the effect of altering the conversation at the bedside when it most needs to take place. However, we will continue to invest in the specialist nurses who are trained to have those conversations in the most sensitive way. It is important that they are specialists, because the surgeons and medical staff who are emotionally invested in trying hard to save a life should not be the ones who then must have that conversation with the family—that clearly would not work.
I totally endorse the argument that, in addition to the new system, the accompanying measures relating to all support staff and communication will contribute to an increase in the number of organs available for transplant. It is only by taking those measures together, rather than in isolation, that the scheme will be successful.
In the time remaining, I want to address some issues that have arisen. There is a lot of nervousness. People are inhibited from signing up to organ donation mostly by a sense of mistrust—of institutions of the state and of medical professionals—and because they do not really know what happens. I want to put some points on the record to calm the situation and provide reassurance.
We have talked extensively about the need for more donors from black and Asian communities because they are more likely to suffer from conditions that require a transplant. Obviously, the most successful transplants are those with a strong genetic match, so we need more of those donors.
We know that the issue is taboo in some communities. Some people believe that there are reasons of faith for not supporting transplantation. We have been working with various faith leaders to develop messages and materials to reassure people that the practice is consistent with their beliefs. I am grateful to my hon. Friend the Member for Torbay (Kevin Foster) for mentioning that the Board of Deputies of British Jews supports the Bill. We have had similar conversations with representatives of the Hindu faith, the Sikh faith and the Muslim faith, as well as with Christian Churches.
That dialogue needs to continue. It is clear that people will respond to messages from people whom they trust and respect, so it is very important that we continue to engage with faith communities. It cannot all be done at once; we need to keep chipping away and sending messages. I hope Members will use the toolkits I have circulated today. They are designed to equip Members of Parliament, who are trusted in their communities and are good advocates for the proposal, with the material to engage directly with communities.
Much reference has been made to the role of families at the bedside. There is concern that families often overrule the wishes of people who want to donate, but we need to protect the family’s ability to have that final consent. It is very easy for us to imagine situations in which we would want our wishes to be respected, but we do not know the circumstances when it comes to matters of life and death. It is very important that families have that final consent, and I emphasise that that will remain the case. I cannot emphasise enough that if people have that conversation with loved ones, their wishes are less likely to be overruled.
I remind the House that guidance on the current system of consent is detailed in a series of codes owned by the Human Tissue Authority. We will update those codes and people will have the opportunity to make representations. The idea is to have a complete, up-to-date document providing information on the approach taken in England. The guidance will cover how consent can be expressed; how people can register their wish to opt out; the role of the organ donor; and how specialist nurses will interact with families. It will also give people the opportunity to record that their faith is important, if they wish that to be an issue of consideration.
It is also worth noting that as we develop technological solutions to addressing things in the NHS, people will be able to amend their views on donation regularly by direct interface with an app. They will be able to change their mind. One day they might decide that they are happy to give their corneas and then on another decide that they are not. People will be able to make that selection and make anything that they would wish to be considered clear.
On timing, we hope that the Bill will receive Royal Assent by March, in which case the HTA is all set to go to produce a first draft of the code by May. That will be followed by a 12-week consultation on the draft guidance with stakeholders, including faith groups, so there will be another opportunity for us to address any concerns properly at that time. We expect to lay that guidance before Parliament next September. I can therefore assure the House that we intend to make use of this Bill speedily once it has received Royal Assent.
I wish to make a point about children. Obviously, children below the age of 18 will be exempt from the Bill, as they are not at the age of majority in order to make their choices known. As before, the family will be fully consulted. The safeguard will be as it is now, and children are always dealt with extremely sensitively.
I have mentioned that we will continue to engage with faith groups. I wish to emphasise that NHSBT is updating and extending its faith training, so that as we can expect more conversations to be taking place on the part of specialist nurses following this change, people will be kept fully up to date with any religious and cultural issues that might need to be considered.
Finally, I wish to say something about an issue that Members may have been lobbied about: novel transplants. We have all talked a lot today about kidney, liver, heart and lung transplants, and these are the organs we are all used to talking about. Clearly, medical advances being what they are, other things will materialise; I have heard evidence of hand, face and uterine transplants. They will not be covered by the Bill. They will be exempted by our introducing regulations that exempt certain organs from the deemed consent procedure. We have done it that way because this Bill needs to be able to have a life and to respond to medical advances, so it is better to have regulations that enable us to exclude rather than to have a list of organs that are covered. In that way, it is easier to keep this law in date.
Andrew Bowie (West Aberdeenshire and Kincardine) (Con)
Does my hon. Friend know whether the proposals she has set out on protecting parts of the body such as hands and the other things she mentioned will be marrying up with legislation going through the devolved legislatures now? Will we therefore have a similar code of practice across the entire UK?
Jackie Doyle-Price
Just as this Bill has progressed with good will from those in all parts of this House, so it has progressed with good will from all nations. We have all been sharing our experience to make sure that we get this right. So I am sure that that will be taking place in a consistent way.
In conclusion, as I said at the beginning, I am so proud that I have been able to play my part in taking this Bill forward. I am so grateful for the good will from both sides of the House in taking this forward. It has been a fantastic piece of cross-party working. It has made the process quick and speedy, and we have all been focused on what we are trying to achieve, which is to save more lives. I am very confident that Max’s and Keira’s law will have a very positive impact on how we treat people with organ failure and that it will also kick-start a cultural change in how we address these issues. In fact, it already has: people are talking about organ donation much more and joining the organ donor register at increased rates. I hope that the House will give the Bill its wholehearted endorsement.
Friday 23rd November 2018
(5 years, 12 months ago)
Lords ChamberOrgan Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
This text is a record of ministerial contributions to a debate held as part of the Organ Donation (Deemed Consent) Act 2019 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)
My Lords, I join the noble Baroness, Lady Thornton, and the noble Lord, Lord Carlile of Berriew, in congratulating noble Lords on a superlative debate on a vital and highly sensitive issue. It is a credit to this House. I thank the noble Lord, Lord Hunt, for bringing the Bill to the House and presenting it in such an authoritative way. I also thank MPs in the other place, Geoffrey Robinson and Dan Jarvis, both for bringing the Bill forward and for their collaborative work with the Government on it. I thank them and everybody else who has worked so hard to get the Bill this far for their ongoing dedication.
As has been remarked, the passing of the Bill would mark a significant step towards transforming and saving the lives of hundreds, if not thousands, of people in the UK waiting for a life-saving transplant. As my noble friend Lord McColl said, what is at stake could hardly be more important. While we have made great strides in recent years, we can and must do better, as we were reminded by the moving story of the noble Lord, Lord Elder.
The Government are committed to the Bill. In October 2017, the Prime Minister committed to changing the current system of consent to shift the balance of presumption in favour of organ and tissue donation in England. Her position gained support from leaders of all parties and Members in both Houses, for which I am truly grateful. As I said, the Government welcome the Bill and support it wholeheartedly as an additional and necessary measure to address the tragic death rates due to the lack of organs and tissues available for donation. As the noble Lord, Lord Oates, reminded us, public support for higher donation rates is already there, as it is among critical organisations in the healthcare family. Our job as legislators is to put in place a system that responds to public demand, but in an ethical, practical and effective way. I think that the Bill succeeds in this regard.
As has been said, the passing of this legislation is neither a silver bullet nor a magic wand, but I believe that it will play a significant role in changing the culture towards organ and tissue donation in England. Like the noble Lord, Lord Hunt, I pay tribute to Max Johnson and the family of Keira Ball. Max, whose plight captured the hearts and minds of the public and whose bravery has been remarked upon, was fortunate enough to receive the gift of life from nine year-old Keira Ball, whose family took the extraordinary and generous decision to transform and save the lives of others by making her organs and tissues available to those in need. We should never forget the importance of such gifts. I want to be absolutely clear that under the new approach set out in the Bill, organ donation will be a most precious and joy-giving gift, to use the phrase of the noble Baroness, Lady Crawley.
NHS Blood and Transplant does tremendous work in recognising the generosity of donor families in various ways, including by awarding them the Order of St John. I reassure all noble Lords that celebrating donation will continue; it is an important aspect of making organ donation part of our culture. Enough gratitude cannot be given to families who, at a time of such grief, take the big-hearted decision to transform or save the lives of others. I assure the right reverend Prelate the Bishop of Carlisle that, as I said, organ donation will always be a gift; that will remain the case. The decision of donation will remain: everyone will continue to be able to opt in or opt out of donation. To save more lives, we will still need more people to take the positive step of registering their decision to donate, so that if they die in circumstances where donation is a possibility, their organs and tissues can be made available to help those so desperately in need and the family can support that positive decision.
I should like to reflect on some important changes made to the Bill in the House of Commons where, as has been remarked, there was broad cross-party support. A set of amendments were made in the other place, including a power to remove novel forms of transplantation, such as faces and limbs, from the scope of the Bill. On this point, I want again to reassure noble Lords that the Bill will not change the list of organs and tissues currently considered standard donation. These are heart, lung, kidney, liver, pancreas, bowel, and tissues such as corneas, skin, bone and tendons. To ensure consistency with Wales and the proposal in Scotland, I confirm that for the rarer, more unusual types of transplants, known as novel transplants, as we will set out in regulations, there will continue to be a requirement for express consent to be given for donation to proceed.
If, following advice from medical experts and NHS Blood and Transplant, there is a need to update the list of novel transplants, we will consult on the relevant regulations, which will be laid under the affirmative procedure so that there will be full parliamentary scrutiny. On the point made by the noble Lord, Lord Hunt, I can go further today and confirm that the Government will lay a Written Ministerial Statement after any changes are passed by Parliament to give absolute clarity on how regulations have been updated and what they mean in practice for deemed consent.
We all know that this change in the law is important, but it is not the whole story. Making sure that the public are aware of the change and of the importance of organ donation is the critical change. The consent system needs to be accompanied by a comprehensive public awareness campaign to give the public time to understand the changes, have a discussion with their family and make an informed decision about whether they wish to donate their organs and tissues. The Government will develop easy-to-understand material, kept up to date with information about the options, what organs and tissues can be donated and other details.
I take seriously the points made by the noble Baroness, Lady Thornton, the noble Lord, Lord Patel, and my noble friend Lord Ribeiro about the importance of this campaign reaching the BAME community. A campaign on that front started in July but clearly, we need to do much more and have much greater opting in and awareness in these communities. We have had some success on this front with blood donation; we need the same kind of success in these communities with organs and tissues.
On the point made by the noble Baroness, Lady Randerson, I can confirm that, following Royal Assent, working with charitable and other groups—and learning very much from the Welsh example—we will launch a 12-month communication campaign to support donation. The new system will go live in 2020, after the initial transitional communication campaign has ended. However, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the NHS Act 2006. We know that changing the culture around organ donation requires continuous engagement with the public and is not a one-off exercise. I can reassure the noble Baroness, Lady Deech, that we are committed to follow-up campaigns in the years to come, and the noble Baronesses, Lady Finlay and Lady Randerson, whom I applaud for their extraordinary work in Wales, that we are keen to learn from the Welsh experience what works and what, if anything, we can improve on.
Another issue that noble Lords have raised is the importance of the family. As my honourable friend the Member for Thurrock highlighted several times during the Bill’s passage through another place, one of its important aims is to encourage everyone to think about what they want to do and talk to their friends and family about their wishes, so that they are left in no doubt about what their loved one would have wanted. As the noble Lord, Lord Elder, said, no consequence of the Bill could be more important.
Of course, some find such conversations difficult, but the benefit is that in the sad circumstances when a family is involved in discussions with the specialist nurse following a death, they do so in the knowledge that they are doing what their loved one would have wanted. Registering a decision on the Organ Donor Register is the best starting point for that conversation, and the most effective, as the noble Lord, Lord Oates, reminded us.
When families have not spoken to their loved one about organ donation, they are much more likely to reject donation. Some families come to regret that decision when they realise that they could have helped someone who was still alive. But let me leave you in no doubt that, as now, there will always be a discussion with the family on the best way forward. To reinforce the point made by my noble friend Lady Chisholm and in reply to questions from my noble friend Lord Leigh and the noble Baroness, Lady Deech: no family will be forced to agree with the donation if they are strongly opposed to it. My noble friend Lord Lansley spoke from great experience about the importance of good guidance for staff when implementing this regime. I will turn to how we will deal with that issue shortly.
As has already been mentioned by the noble Lord, Lord Hunt, and my noble friend Lady Brady, I confirm that children under the age of 18 will be exempt from deemed consent. That does not mean that they cannot donate but, as is current practice, children of any age will be able to register if they wish to donate or not donate their organs; the parents of the child will always be asked about the child’s decision to donate.
A third issue raised today, and an extremely significant one, is the importance of working with faith communities. I was pleased to hear the noble Baroness, Lady Deech, recognise that the Government have made concerted attempts to work with faith communities to build safeguards into the new system. We have announced various specific measures in the Government’s response to the consultation. For example, from next month, a new option on the organ donor register will allow those who register to ask that their family, or anyone else they wish, has a personal discussion with nurses and doctors about how donation can go ahead in accordance with their religious and cultural customs.
I can state categorically, to reinforce absolutely the point made by the noble Baroness, Lady Thornton, that the state will not take control of anyone’s body as a consequence of this Bill. We will update the current codes of practice on organ and tissue donation for healthcare professionals; in doing so, we will set out how religious and cultural considerations will form part of the discussions with the family and we will involve the different faiths in its development. NHS Blood and Transplant will supplement this with training for healthcare professionals. That work is progressing well and I reiterate the Government’s commitment to working with all faith groups to make sure it is successful.
I mentioned the importance of a new code of practice to implement the new system that we hope to move to; that will be developed by the regulator, the Human Tissue Authority. The existing codes will be updated to reflect the changes and, for ease, we will pull them together in a single code, on which there will be a 12-week consultation period. The noble Lord, Lord Carlile, pointed out that there will also be important implications for the professional regulators. I am sure that the noble Lord, Lord Hunt, will also want to take that on board in the new role we are all pleased to see him playing.
The issue of the NHS’s capacity was raised by my noble friend Lady Sater and others. The Government recognise that it is absolutely necessary for the NHS to manage the increase in donations and to carry out these life-changing operations. My officials have already started early work on planning with NHS England and NHS Blood and Transplant to make sure that the system is ready for the changes. Following these discussions, NHS England will consider the financial and service commissioning implications, so that we have the capacity and expertise to benefit from increased donations.
I will address a couple of issues raised by my noble friend Lord Leigh and reinforced by the noble Baroness, Lady Deech. They asked about the letter written by my honourable friend Jackie Doyle-Price explaining how the Bill would work. I emphasise that the letter is not a supplement to the legislation; it is an explanation of how the system of deemed consent will work in practice. The points that she set out on this hold absolutely. With their permission I would be delighted to share the letter with all noble Lords who are interested in the debate so that they can see the reassurances that we have provided. I believe it will provide some of the answers to questions raised in the debate.
My noble friend also asked whether the organ donor register should be given explicit legal consent. I do not think that is a necessity as the system has been working successfully for 30 years. The Secretary of State continues to have a duty under the NHS Act 2006 to make arrangements to facilitate tissue and organ donation. We believe the system is there; it is about using it to the maximum of its potential.
Before concluding, I will talk about the most important issue of all in getting this right, and that is staff. Specialist nurses for organ donation are highly trained professionals, usually from an intensive care or emergency medicine nursing background. When nurses join NHS Blood and Transplant, they initially receive extensive training over a six-month period. This covers all aspects of organ donation.
A key focus of the training is to enhance nurses’ skills in supporting acutely bereaved and grieving families, as this is an important, indeed essential, element of their role. When a patient has registered their decision to donate or when a family wishes to donate their loved one’s organs, the specialist nurse will skilfully and sensitively navigate the family through the detailed paperwork and mandatory medical history taking. When the family does not agree with the donor’s decision, the specialist nurse is trained to help the family come to terms with that decision. Experience from Wales tells us that this works and I can reassure noble Lords that we will make sure that there are enough highly trained staff to make the most of the changes resulting from this Bill. Our current estimate is that 27 more nurses would be required but, of course, if that number were to rise, we would make sure that they are fully trained and fully financed for the future.
The Government are confident that this piece of legislation will be pivotal in helping to transform and save hundreds of lives. Deemed consent in Wales is already showing promising results, with many more families now agreeing to organ donation when approached for this important discussion with specialist nurses. For those noble Lords concerned about the evidence base for change, we have seen in Wales, as the noble Baroness, Lady Randerson, pointed out, an increase in the number of deceased donors, from 60 in 2014-15 to 74 in 2017. Indeed, she talked about there being 44 in the first six months of this year. So there is evidence for its effectiveness, and our Chief Scientific Officer states in the impact assessment for the Bill that he can say with “moderate certainty”, that systems of opt-out, when introduced with a range of other support, such as logistical support, public awareness and so on, do increase donation rates.
I just pick up one point made by my noble friend Lord McColl on providing an opt-out in the Welsh system which in theory reduces the pool of potential donors. That means that, beforehand, there could have been donors who were having organs taken from them when they were not happy for that to happen. If anything, the Welsh system has provided greater individual autonomy while also increasing the number of donations. That seems to me to tick both the boxes that we would want for any system. The evidence for that is very powerful and gives us cause for hope and encouragement.
I conclude by reiterating the Government’s support for this Bill, congratulating the noble Lord, Lord Hunt, on bringing it forward and thanking all other noble Lords for their excellent contributions. If any noble Lords have continuing concerns about any part of the Bill, I would be more than happy to meet with them to discuss it. The Government are very keen to make progress with this. There is of course a risk that, as the time towards the end of the session gets short, we will not manage that, which would be highly regrettable.