Human Transplantation (Wales) Act 2013 (Consequential Provision) Order 2015

Baroness Randerson Excerpts

Wednesday 4th March 2015 Grand Committee

Moved by

[Baroness Randerson]

That the Grand Committee do consider the Human Transplantation (Wales) Act 2013 (Consequential Provision) Order 2015

Relevant documents: 21st Report from the Joint Committee on Statutory Instruments, 25th Report from the Secondary Legislation Scrutiny Committee

[The Parliamentary Under-Secretary of State, Wales Office (Baroness Randerson) (LD)]

My Lords, the order was laid before this House on 21 January 2015 and is made under Section 150 of the Government of Wales Act 2006, which allows for amendments to be made to primary and secondary legislation in consequence of provisions made by an Assembly Act. The order is made as a consequence of the Welsh Government’s Human Transplantation (Wales) Act 2013, which was passed by the National Assembly for Wales on 2 July 2013. I shall refer to this as the 2013 Act.

The 2013 Act changed the way in which consent for the purposes of transplantation is to be given for the donation of organs and tissue in Wales. From 1 December 2015, after death, a person’s consent will be deemed to have been given in most cases, unless they had expressed a wish for or against donation. The notion of “appropriate consent” from the Human Tissue Act 2004, which I shall refer to as the 2004 Act, is therefore replaced by two concepts in Wales: “express consent” and “deemed consent”.

The order makes provision to amend the 2004 Act to allow for organs and tissue donated in Wales under the deemed consent regime of the 2013 Act to be used in transplantation procedures undertaken in England and Northern Ireland. It will also ensure that a person appointed to act as a representative for the deceased, under either the 2013 Act or the 2004 Act, will be recognised whether the transplantation activity takes places in Wales, England or Northern Ireland. Finally, the order also amends the Quality and Safety of Organs Intended for Transplantation Regulations 2012, to make reference to the deemed and express forms of consent that will soon take place in Wales.

In preparing the order, the Wales Office has worked closely with the Department of Health as well as the Welsh Government. We are all agreed that the provisions in this order are necessary to ensure that the new Welsh organ donation regime interacts with the existing regime in other parts of the UK. The order is therefore important to the UK. Without the order, when the deemed consent system comes into force in Wales at the end of this year, it would not be possible to use organs, tissue and cells donated under deemed consent in Wales for the benefit of patients in England and Northern Ireland. The order does not extend to Scotland. The Scottish Government have confirmed that no amendments are required to Scottish legislation for organs, tissue and cells taken under the deemed consent regime of the 2013 Act to be transplanted in Scotland. Deemed consent is not being introduced in England or Northern Ireland as a result of this order.

The order demonstrates the UK Government’s continued commitment to work with the Welsh Government in order to make the devolution settlement work. I hope noble Lords will agree that the order is a sensible use of the powers in the Government of Wales Act 2006 and that the practical result is something to be welcomed. I commend the order to the Committee.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the Minister for the way that she succinctly introduced this important order.

I must declare an interest as president of the BMA. Since 1999, it has been BMA policy that we should move to what is often called an opt-out or deemed consent process. Indeed, I was also part of the move to create the opportunity for preferential donation to a relative in the event of there being a family member in need of an organ when there was a tragedy within that family. I understand from NHS Blood and Transplant that that is now being used approximately three or four times a year and actually working very well. My other interest is that I tried to introduce a Bill for a single kidney deemed consent, which did not get anywhere but did, I think, push the process further down the road.

The order is obviously important. We know that, every day in the UK, three people die waiting for a donated organ. The change under the 2013 Act should hopefully change the situation in Wales. But of course there is concern that Wales may become, if you like, a net donor of organs to the rest of the UK. My questions relate to that possibility.

First, what steps are the Government taking to increase the number of donors in England? Secondly, are the Government planning to review the Human Tissue Act 2004? Given that we now have these developments in the legislation in Wales, are the Government willing to facilitate an informed public debate about opt-out in England?

My other concern relates specifically to the cost, which will be borne by Wales. For the 2013 Act in Wales to work well, it will increase pressure on intensive care beds and it has been predicted that there will be a need to increase intensive care provision as a result of pushing up the number of donors and holding patients while the processes are gone through. That cost will be borne by NHS Wales. Is that increased cost going to be considered by NHS England and reimbursed in some way to NHS Wales? The cost-saving of somebody receiving an organ for transplant will be a cost-saving to NHS England, not NHS Wales. We know that there are significant cost-savings, quite apart from quality of life and life expectancy, if there is a successful transplant. I am grateful to the Minister for having met me and discussed this previously and understand that the cost of restructuring the donor register will be shared between England and Wales. But that is a one-off cost and will be quite small, whereas the relative cost to Wales for organs may be much higher and ongoing over many years, until such time as England and Northern Ireland follow suit.

Can the Minister also confirm that there will be no adverse effect on the use of organs donated in England, Northern Ireland or Scotland for patients in Wales if there is a very good match? Will the fact that we will have a different consent procedure, which will allow organs to go from Wales, also allow organs to come into Wales? That will become particularly important in paediatrics, where the size of the organ is important, as well as the tissue match of the organ.

Finally, last week I was privileged to host the signing of a memorandum of understanding between NHSBT and the MOHAN Foundation from India. The MOHAN Foundation has been working to push up the consent rate when families are approached and has done it very successfully. It has consent rates consistently over 60%, whereas in the black and minority ethnic community, particularly the Asian community—which has a very high demand for organs because of damage from diabetes; there are a lot of Asians on the transplant register awaiting transplant—the number of organs donated is remarkably low and at best hits 40% at times of agreement; in many areas it is much lower than that. Will the lessons that have been learnt over recruitment be supported and actively rolled out in a campaign aimed at those communities in England and Northern Ireland, but particularly in England, where the majority of those communities are, to make sure that the consent rate within those communities, where the genetic match would be much better, does go up, at least to equal the consent rate in the rest of England?

[Baroness Morgan of Ely (Lab)]

My Lords, I thank the Minister for outlining the order. The Welsh Government have for a long time rightly been concerned about the number of people who have been critically ill and died while waiting for a suitable organ to be donated.

The UK as a whole has not had a great record in the past in terms of organ donors, and despite a huge push by the Organ Donation Taskforce to increase significantly the number of donors, the UK continues to have one of the highest family refusal rates in Europe. After detailed research and investigation, the Welsh Government decided to change the law in Wales, as the Minister outlined, so that the public were deemed to have given their consent to use their organs unless they had opted out of the system. Obviously, there are exceptions to this and these are outlined in detail in the Human Transplantation (Wales) Act.

The rights and wrongs of whether it is a good idea to have this system of presumed consent are not under scrutiny today, although I agree with the noble Baroness, Lady Finlay, that it is worth looking at how successful this is going to be in Wales. Of course, this is a matter on which the Assembly has decided to legislate. My understanding is that the need for this SI is due to the fact that Wales is anxious—correctly, in our view—to ensure that there will continue to be a cross-border flow of organs and tissues across the UK. The change proposed means that organs from Wales will continue to be able to be used in England and Northern Ireland. It is worth noting, as the Minister pointed out, that the law does not need to be changed in relation to Scotland.

I would like to underline some of the points made by the noble Baroness, Lady Finlay. If Wales is introducing this, presumably we are proportionately going to be doing more heavy lifting in terms of organ donation than the rest of the country. That is good—we in Wales are helped out by the rest of the country very often—but as the noble Baroness, Lady Finlay, underlined, there is a cost to this and it would be useful to know whether there will be an additional contribution from the NHS in England. Has any negotiation been undertaken with NHS England in terms of additional help as a result of that cost? We know that Wales could do with the help in financing the NHS.

The Labour Party is in agreement with this order and we give it our support.

[Baroness Randerson]

My Lords, I thank the noble Baronesses, Lady Finlay and Lady Morgan, for their comments and for their support for this order. I will do my best to answer them in detail.

The noble Baroness, Lady Finlay, asked about preferential donation. As she knows, with her considerable expertise and experience, organs are donated unconditionally and allocated to sick patients on the basis of their clinical need. You cannot name an individual or individuals to whom you would like your organs donated when you join the NHS donor register, but a requested allocation could be possible at the time of your death if there was someone close to you who was waiting for an organ transplant. The noble Baroness made reference to a potential increase in the number of donors as a result of the deemed consent system. On the basis of statistical probability, approximately 15 extra donors a year are likely to become available. Donors tend to donate several organs, so it is estimated that this would help between 45 and 60 recipients.

There has been a considerable increase in the efficiency and co-ordination of organ donation and transplants in recent years, partly because of the efforts that the Government have made to increase the number of organs available. There is a commitment to ensure that organs continue to flow across the border; indeed, the whole purpose of this order is to ensure that that continues. I know that the Welsh Government are committed to that, as are the UK Government.

The noble Baroness, Lady Finlay, asked what England is doing to increase the number of donors. Since 2008 and up to April last year, there was a 60% increase in the number of organs donated in the UK and a 47% increase in transplant rates. That is significant progress, although the UK Government firmly acknowledge that there is more to be done. A new, seven-year UK-wide organ donation and transplantation strategy was jointly published by the four UK Health Ministers and NHS Blood and Transplant in July 2013. I hope that this reassures noble Lords that the Government are committed to working closely with the three devolved Governments and to increasing consent rates.

The UK continues to support work to increase donation and transplantation rates further, particularly promoting collaborative work among organisations to raise awareness of donation in the black, Asian and minor ethnic populations. The noble Baroness made reference to that. I was interested and pleased to see in the Commons Lobby yesterday a stall from Transplant 2020, with literature and an expert clinician available to encourage Members of this House and of the other place to sign up but basically to discuss the issues associated with organ transplantation. The literature given to me referred to the need for greatly improved rates of organ donation among BME communities.

The noble Baroness asked whether the UK Government would move in any way towards a similar scheme, or discuss that. I think we would all acknowledge that the debate in England is at a much earlier stage than the debate in Wales, which has gone on for a significant number of years and has been subject to very wide consultation, but I can commit to the fact that the UK Government will look closely at the impact on donor numbers of the work that Wales has been undertaking.

The noble Baronesses, Lady Finlay and Lady Morgan, referred to costs. The increase in the number of beds required will, I am told, be minimal, and the Act will not increase the need for critical care beds. The increase in the number of donors will pay for itself over 10 years because the organ donation system is efficient and reduces hugely the costs of care for people suffering from organ failure. It will take some years for that to work through, but it is important to bear in mind that organ donation reduces the costs not only of healthcare but of social care in many cases, as well as the impact on families and the individuals concerned.

The noble Baronesses asked what England will do to reimburse Wales for the increased costs of intensive care beds. Each UK hospital receives up to £1,000 for every donor or potential donor in order to help with intensive care costs. Discussions are already under way across the four countries on the best way in which to fund the increase in the number of donors and transplants.

I hope that with those comments I have satisfactorily addressed the concerns of both noble Baronesses, and I join them in the concerns that they have raised about the need to, by whatever method, ensure that we increase the number of donors and particularly concentrate on the two issues that they outlined—first, the high family refusal rates, which have proved to be extremely difficult to deal with, and, secondly, the low donation rates among BME communities. I commend the order to the Committee.

Motion agreed.