People living with kidney disease share their experiences with government

We were delighted to meet with patient representatives and over 40 MPs at the Houses of Parliament yesterday, to discuss organ donation ahead of Organ Donation Week 2023.

Every day 23 people, almost one every hour, develop kidney failure which is why we invited people living with kidney disease to join us at this reception.

Together we demonstrated the difference organ donation and transplantation makes and explained to policymakers that continued public education and communication is needed to increase the number of transplants. It was inspiring and encouraging to hear the insightful comments and a real interest from Parliamentarians.

Fiona Loud, Policy Director at Kidney Care UK, said: “Right now, more than 7,000 people are waiting for a transplant in the UK, the highest in nine years – we need to come together, increase public awareness of need and ensure this number is reduced. Please, we urge everyone to talk to your family about organ donation.”

Dan Jarvis MP, a strong supporter of organ donation, hosted the event. He told us: “Whilst progress has certainly been made on organ donation, more must be done. We must shorten waiting times; decreasing average waiting times would reduce the number of people who become too sick for a transplant, but increased consent rates and more successful transplants are also needed for this to happen. Focus on prevention is much needed; chronic kidney disease is common and harmful but in some cases prevention of deterioration is possible with attention to diabetes, blood pressure, lifestyle and new medications. Prevention is vital. Public education programmes on organ donation were reduced during Covid-19 but now need renewal and funding.”

We heard some very moving words from Jay Patel whose son Aari died aged three and who donated seven organs and saved the lives of two other children.

The National Medical Director of NHS England, Professor Sir Stephen Powis, and presenter DJ Ace, a kidney transplant recipient himself, were also in attendance with Naomi Thomas, Ace’s kidney donor.

Professor Powis mentioned how hard it had been for kidney patients during the pandemic and that he wanted to see a focus on prevention of the condition. As a former kidney doctor he had been pleased to chair the Organ Utilisation group and that he wanted to see more use of perfusion technology to improve the quality of transplanted organs.

In conversation with Fiona Loud in front of the audience, DJ Ace spoke about how difficult he had found it when his kidneys failed, and the challenges of his time on dialysis as well as working as a DJ and being with his family. Naomi told us how she saw on social media that there was a need for living donors in the Black community and came forward to donate; she wanted everyone to know that she was completely well now and she was happy to have been able to donate.

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, says: “This Organ Donation Week we’re urging everyone to confirm their support for organ donation on the NHS Organ Donor Register. Families will still always be consulted before organ donation goes ahead and we know that 9 out of 10 families will agree to support organ donation if their loved one has confirmed their decision to donate on the register. The more people who make their decision known on the NHS Organ Donor Register, the more families will support that decision and the more lives will be saved.”

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