Organ donation in England and the UK: Statistics and law changes

On 12 December 2023, the House of Lords is due to consider the following question for short debate:

Lord Hunt of Kings Heath (Labour) to ask His Majesty’s Government what assessment they have made of the impact on organ donations of the Organ Donation (Deemed Consent) Act 2019.

Organ donation is a devolved matter in the UK. The main impact of the 2019 act related to England, by introducing an opt-out system for organ donation. Therefore, this briefing principally focuses on the provisions for organ donation and the impact of the opt-out change in England. However, it also includes some UK-wide statistics and information.

1. Background to organ donation

Organ donation is when an organ is given to someone else in need of a transplant to save or enhance that individual’s life. The most common transplants involve kidneys, hearts, livers and lungs.^[1]

Organ and tissue donation is largely from individuals who have died. However, people can come forward to donate certain organs, including kidneys and parts of a liver, as a living donor. According to the statistics for 2022/23 there were 1,429 deceased donors that year and 958 living donors, around a 60:40 split.^[2]

The NHS estimates that only around one in 100 people die in circumstances, such as in hospital emergency or intensive care units, that would make them a viable donor.^[3] However, multiple donations can be made from an individual donor. For example, in 2022/23 there were 4,533 transplants made from the 2,387 donors.

The NHS has stressed there is still need for more organ donations. In its latest report, covering 2022/23, it said that in the UK:

There were 6,959 patients waiting for a transplant with a further 3,822 temporarily suspended from transplant lists as of the end of March 2023. [In 2022/23] 439 patients died while on the active list waiting for their transplant compared with 429 in the previous year. A further 732 were removed from the transplant list, mostly as a result of deteriorating health and ineligibility for transplant.^[4]

The report highlighted the importance of people making their wishes clear on organ donation on the NHS organ donor register (ODR) and by telling their families what they want to happen when they die (the rules on consent for organ donation are explained in section 2 of this briefing). It also said that the NHS needed to “embrace technology and innovation to utilise as many of those donated organs as we can”.^[5]

The NHS has also highlighted challenges presented by low donation rates among Black, Asian and minority ethnic (BAME) groups and concerns in religious communities about how organ donation fits with their beliefs. NHS Blood and Transplant has published information on how it is trying to deal with these issues, which includes outreach programmes and targeted funding.^[6] It also regularly publishes statistics specifically on ethnicity differences in organ donation.^[7]

2. Legislation and rules on consent for organ donation in the UK

2.1 Current arrangements for organ donation consent

All regions of the UK now effectively have an ‘opt-out’ system for organ donation consent; this means it is generally presumed you are content to be an organ donor upon death unless you signal otherwise on the ODR.^[8]

The ODR is used to record an individual’s organ donation preferences and is checked by a specialist upon their death where they may be a viable donor. The deceased’s preferences are then discussed with their family and others holding close relationships with them.^[9] If they object to donation then the NHS stresses that donation will not proceed. The NHS therefore highlights the importance of individuals also talking to their family about their organ donation wishes.^[10]

2.2 Introduction of the opt-out system in England by the Organ Donation (Deemed Consent) Act 2019

In England, the opt-out system was introduced by the Organ Donation (Deemed Consent) Act 2019 and officially came into force on 20 May 2020.^[11] It is often referred to as ‘Max and Keira’s law’ as it followed a campaign fronted by Max Johnson, a 10-year-old who was saved by a heart transplant he received from the donor nine-year-old Keira Ball, who died in a car accident.^[12] Prior to the introduction of the 2019 act an ‘opt-in’ system operated in England, whereby individuals would need to signal their intent to donate on the ODR or by nominating someone to make the decision on their behalf.^[13] The act also provided exceptions to deemed consent (for example, where a person was vulnerable or had not been living in England for longer than 12 months), gave powers to make regulations excluding “novel transplants” from the provisions, and it required the Human Tissue Authority to provide guidance.

The legislation was introduced in Parliament as a private member’s bill in the House of Commons by Geoffrey Robinson (then Labour MP for Coventry North West) and was taken through the House of Lords by Lord Hunt of King’s Heath (Labour). It received cross-party support.

Speaking about the need for the legislation, Geoffrey Robinson said that there tended to be positive public support for organ donation in England, but that many did not get around to signing the register to opt in. He hoped the legislation would address the low organ donation consent rate in England and also lead to more open family discussions about people’s wishes:

In England, for example, the situation is disappointing. We have some of the lowest rates of consent for organ donation in western Europe. Low family rates of consent have been one of the major barriers to the donor rate increasing. In effect, that prevents one third of available organs from being used. They go straight to the grave or to the crematorium. None of us likes to think about the worst happening, and it is challenging to have conversations with family and loved ones about one’s wishes after death. However, one of the bill’s principal aims must be to encourage open discussions among families, so that an individual’s real wishes are known to their nearest and dearest. I think it reasonable to say that in the majority of cases, given the outcome of the consultation and what we know from the polls, people would wish to donate their organs after their death.^[14]

However, he acknowledged that a number of individuals would not be in favour of organ donation and stressed that opting out would be straightforward.

The bill was explicitly backed by Theresa May’s government, who had already outlined its intent to change the organ donation consent rules and had launched a consultation on moving to an opt-out system at the end of 2017.^[15]

Speaking during the bill’s second reading, then health minister, Jackie Doyle-Price, reiterated this support and hoped the change would lead to an increase in donations. She estimated it could lead to higher consent rates and could save an extra 200 lives a year:

[…] 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.^[16]

The change was supported by the majority of health bodies and charities.^[17] For example, the British Medical Association and the British Heart Foundation both saw it as an opportunity to try to address the shortage of organs. However, the Nuffield Council on Bioethics queried the evidence base for the change. As a result, it feared the change could have “serious consequences for rates of organ donation”. Others, including Professor Chris Rudge, the former national clinical director for transplantation at the Department for Health, and Bishop John Sherrington, a consultor on moral issues at the Catholic Bishops’ Conference of England and Wales, believed organ donation should be based on the individual’s stated choice and should not be presumed.

Further background to the legislation, including external commentary and research on the use of the opt-out system in other countries, can be found in the following briefings:

• House of Lords Library, ‘Organ Donation (Deemed Consent) Bill’, 15 November 2018
• House of Commons Library, ‘Organ Donation (Deemed Consent) Bill 2017–19’, 25 October 2018

3. Impact of the 2019 act and recent statistics

3.1 Statements on the opt-out change

In November 2023, former health minister Jackie Doyle-Price asked the government whether there were plans to review the impact of the Organ Donation (Deemed Consent) Act 2019 on family consent. Responding, the minister for health and secondary care, Andrew Stephenson, said that consent and donation levels had dropped over the pandemic and it may therefore not be possible to properly establish the impact of the legislation:

NHS Blood and Transplant’s evaluation of opt-out legislation in England observed a consent rate of 61% which was lower than the predicted post opt-out legislation consent rate of 78%. The study to evaluate the impact of opt-out legislation in England was designed before the Covid-19 pandemic and opt-out legislation in England was implemented on 20 May 2020 during the height of the first Covid-19 lockdown. Deceased donation numbers dropped 25% during the pandemic period and have yet to fully recover. It is acknowledged that, as the legislation coincided with Covid-19, it may never be possible to distinguish the true impact of opt-out legislation due to the impact of Covid-19 on organ donation.^[18]

However, the government did announce in February 2023 that it was taking forward recommendations from the Organ Utilisation Group (a taskforce set up to review organ donation) in an attempt to improve the system of transplants and better utilise any increased supply of organs flowing from the change to an opt-out system.^[19] It explained that the recommendations were focused on improving patient care, developing better systems so more organs are used, and sharing best practice across transplant centres. The government explained that “too often organs were not properly utilised and there were varying standards of performance and patient care”.

Writing about the opt-out change in 2021, a year after it took effect, John Forsythe, medical director of organ and tissue donation and transplantation at NHS Blood and Transplant, also stressed the impact of Covid-19 but said that public support for organ donation had still proved very high:

This past year since Max and Keira’s law came into effect in England has been completely unprecedented in the history of the NHS, as well as in wider society. All the careful plans we’d made for the introduction of the law had to be quickly reset.

In the early days of the pandemic, many of our specialist organ donation nurses volunteered to help care for patients with Covid-19 in intensive care. Training and other preparations for the new law had to be fitted around this.

To see such a positive and heart-warming response from the public, especially those families facing the very worst news, in some of the hardest circumstances, is such an incredible testament to the strength of those families. Many have told us how organ donation offered comfort in an otherwise tragic situation. We have been really encouraged by the levels of support shown for organ donation over the past year, and the phenomenal efforts from organ donation and transplantation colleagues—as well as wider clinical community—to keep organ donation and transplants happening in the most challenging circumstances.^[20]

3.2 Recent statistics and trends

Statistics for organ donation across the UK in 2022/23 showed that there was a small increase in the number of organ donors that year (by about 2%), but an even larger increase in the number of people registered as needing a transplant (by about 47%).^[21]

The report noted that there had been an increase in the number of people opting in on the ODR, from 27.7 to 28.6 million at the end of March 2023.^[22] It also said there were just under 2.5 million opt-out registrants.

However, it reported a decrease in the overall consent/authorisation rate for organ donation from 66% to 62%. On this, it noted that:

• The consent/authorisation rate was 89% when a patient had expressed an opt-in decision, but 137 families overruled their loved one’s decision to be an organ donor.
• A significant difference is still apparent in the consent/authorisation rates for white patients and patients from ethnic minority groups (65% and 35% respectively).
• There were 1,036 cases where deemed consent/authorisation applied and in 446 cases the family did not support deemed consent/authorisation.^[23]

The statistics also showed that the consent/authorisation rates were lowest in England and Wales (both at 61%) and highest in Scotland (68%).^[24] The rate in Northern Ireland was 65%. Across England, London and the Midlands had the lowest rates (51% and 55% respectively) and the South West had the highest rate (72%).

The three main reasons for families not supporting organ donation, in order, were:

• patient had previously expressed a wish not to donate (26%)
• family felt the length of time for the donation process was too long (13%)
• family were not sure whether the patient would have agreed to donation (12%)^[25]

Religious and cultural beliefs were given as a reason for withholding consent in 6% of cases.

In terms of BAME groups, NHS Blood and Transplant continued to report under-representation and lower consent for organ donation. For example, it said that:

One major concern is the drop in family consent or authorisation rates across all ethnicities. Agreement from families for organ donation to go ahead has fallen over the last few years and it is still much lower for potential donors of an ethnic minority. Overall consent rates were 39% for Black, Asian and other minority ethnic donors last year, compared to 70% for white potential donors, (compared to 71% and 40% respectively last year) and families saying no remains one of the main reasons for organ donation not going ahead. The impact of the pandemic on organ donation activity among ethnic minority communities has been significant and we are gradually recovering from it.

The main reasons families from ethnic minority backgrounds gave for declining consent/authorisation for organ donation were that they felt it was against their religious or cultural beliefs or they were unsure whether the patient would have agreed to donation. Survey results of ethnic minority groups show that not knowing enough about organ donation is also a major barrier to organ donation.^[26]

However, it did say there had been an increase in the proportion of opt-in registrations from ethnic minority groups on the ODR over the past five years and highlighted the work to engage grassroots communities. Overall, the NHS reported that in 2022/23:

People of Asian heritage represented 4% of deceased donors but 15% of deceased donor transplants and 19% of the transplant waiting list; while those of Black heritage represented 2% of deceased donors but 9% of deceased donor transplants and 11% of the waiting list, similar to figures from the previous year. There was also an increase of 6% of living donors.^[27]

The following table shows summary organ donation statistics for the last four and a half years for England only.^[28] This covers organ donation figures before and after the opt-out change came into force on 20 May 2020. However, please note that, as stated above, these figures will have been affected by the Covid-19 pandemic. In addition, the final column only contains half a year’s worth of data rather than a full year.

According to research from the International Registry in Organ Donation and Transplantation, which reports organ donation data across a number of countries, the UK ranked 13th in 2021 for the number of deceased organ donors per million people (pmp), standing at 19.8 pmp.^[29] The US and Spain topped the list, with 41.6 pmp and 40.8 pmp respectively.

The UK ranked even lower for living donors, at 20th, with 11 pmp. Turkey and South Korea had the highest living donor rates, of 52.6 pmp and 51 pmp respectively.

4. Read more

• Alberto Molina-Pérez et al, ‘Differential impact of opt-in, opt-out policies on deceased organ donation rates: A mixed conceptual and empirical study’, British Medical Journal Open, 2022, vol 12, issue 9
• Lancet Gastroenterology and Hepatology, ‘Increasing organ donation rates: Is legislation enough?’, 2017, vol 2, issue 4, p 235

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Cover image by Robina Weermeijer on Unsplash.