NHS Organ Donor Register Reaches 25-Year Milestone

NHS Organ Donor Register is 25 years old

Organ donation and PSCMore than 20,000 lives have potentially been saved in the last quarter of a century thanks to the introduction of the NHS Organ Donor Register 25 years ago, this month 1. This landmark anniversary comes in the same year that the government has granted Royal Assent to new organ donation laws in both England and Scotland, which will see both countries introduce an opt-out system of consent in 2020.

Now, the family who campaigned for the register are sharing their initial views on opt-out.

In 1989, Peter Cox tragically died of a brain tumour, aged 24. He went on to become a donor but in the process his father John, mum Rosemary and sister Christine were shocked to learn that there was no central donor register. If it were not for Peter carrying a donor card – and for them having had the conversation as a family – they may not have known that he wanted to donate.

Following Peter’s death, and in his memory, the Cox family spent five years leading the public campaign for the NHS Organ Donor Register. Through its creation they have gone on to help save thousands of lives – with 7,600 people who were on the register having become donors after their death 1. Fittingly, there are now 25 million people on the Organ Donor Register2.

On the 25th anniversary of the register, Peter’s sister Christine explains how the family have spent all these years hoping for an eventual move to an opt out system:

“My brother Peter achieved an unimaginable amount of good by expressing his support for organ donation, and making his decision known to us as a family. My hope now is that society will embrace organ donation with open arms and start a new chapter of a story that started 25 years ago. For us it’s always been about saving as many lives as possible through organ donation.”

Deemed consent

From spring 2020 in England and Autumn 2020 in Scotland, everyone will be considered as having agreed to donate their own organs when they die (deemed consent) unless they record a decision not to donate or are in one of the excluded groups. This system was introduced in Wales in December 2015 and in Jersey in July this year.

Talk and share organ donation decisions

Families will still always be involved in organ donation, so it is vital that they know what your choice is. 4 in 10 families still refuse to allow a donation. In the lead up to the change in law, NHS Blood and Transplant is urging families across England to talk and share their decision.

If the time comes, families find the organ donation conversation much easier if they already know what their relative wanted. The NHS Organ Donor Register will continue to play an important role in this – any decision recorded will be made available to families before organ or tissue donation goes ahead, to help them support what their relative wanted. Donation will only go ahead with the family’s consent.

A film crew from the BBC health team recently attended a training simulation exercise, at Salford Royal NHS Foundation Trust in Manchester. They produced a report to give viewers a greater insight into the organ donation process and also demonstrated the sensitivity with which the clinical teams and specialist nurses, treat the grieving families who find themselves in this situation. The report, which aired on Monday 21st October 2019, saw a significant increase in visits to our website and prompted 3,339 people to register as organ donors in the evening after the programme.

Soft opt-out system

This soft opt-out system of consent to organ donation was introduced in Wales in 2015 and earlier this year it reported the highest consent rate of all the UK nations3 at 77%, up from 58% at the time of its rule change. It is hoped the law change in England and Scotland will see similar increases in consent rates, so more lives can be saved or transformed.

Anthony Clarkson, Director of Organ Donation and Transplantation for NHS Blood and Transplant, says: “Although the law is changing it will still be the generosity of donors and their families to give the precious gift of organ donation. Regardless of your donation decision, the most important thing is to make your family are aware.

“By increasing awareness and understanding of organ donation, we hope to inspire more individuals and their families to donate, so more transplants can happen, and more lives are saved.”

 

To find out more about organ donation or to register your decision, visit: organdonation.nhs.uk or call the dedicated advice line on 0300 303 2094.

For more information about PSC and organ donation, see PSC Support's organ donation pages.

  1. NHS Blood and Transplant statistics show that as of 30 September 2019, there have been 7,644 deceased organ donors who were on the NHS Organ Donor Register, and that these donors enabled 20,562 transplants. This is since the register was launched on October 6, 1994.
  2. NHS Blood and Transplant statistics show that as of 30 September 2019 25,570,729 people have opted-in to the NHS Organ Donor Register
  3. https://gov.wales/wales-leading-way-organ-donation

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