Fiona Loud, Policy Director at Kidney Care UK shares why everyone who needs a life-saving transplant should have the best chance of receiving one.
Kidney disease affects millions worldwide, with the LSE predicting a 34% rise in cases in England by 2040 – making prevention and early treatment a pressing priority.
Kidney transplantation stands as the most effective treatment option for many facing end-stage renal disease. There is no cure for kidney failure, and a transplant will last - on average - for 20 years.
The transplant waiting list is not a normal list. It is not a case of first come, first served, but rather finding the best match. Children under 18 receive top priority so their wait can be shorter. You become a higher priority the longer you wait.
The saving to the NHS budget achieved through a kidney transplant are clear. On average, dialysis costs £30,800 per patient per year. Kidney transplant surgery costs around £17,000 and the immuno-suppression medications required by a patient with a transplant costs around £5,000 per patient per year.
This is before you take into account the life-transforming effects on the recipient which include for many the potential to return to work, engage in activities they love, and spend more time with their families.
What is happening
The facts:
- 6,250 people are currently waiting to receive a kidney transplant in England, Wales, Scotland, Northern Ireland
- Over 900 people donate a kidney while they are still alive, every year across the UK
- 43,100 recipients across the UK are living improved lives thanks to a functioning kidney transplant.
As part of our ongoing work to increase organ donation and organ transplantation, Kidney Care UK has been at the forefront of changing organ donation laws to an opt-out system across the four nations of the UK.
However, with numbers on the transplant waiting list currently at a ten-year high, much more needs to be done to improve the opportunities for people to be able to receive a transplant.
It’s disappointing that family (or next of kin) consent/authorisation rates for organ donation fell again last year from 66% to 62%. This is despite the fact that 30 million people have registered their decision on the NHS Organ Donor Register, and with the new opt-out systems in place, the starting position for those adults who haven’t as yet registered a decision is that donation should go ahead. With family consent required for donation to proceed, in all circumstances, its crucial people know the wishes of their loved ones – it’s no exaggeration to say that these are conversations which have the power to save and transform lives.
Inequality of access
According to NHS Blood and Transplant, a third of people waiting for a kidney transplant in the UK are from Black, Asian and other minority ethnic groups. The average waiting time for a kidney transplant is around two years, but people in these groups can wait even longer to find a suitable match.
In 2019/20 18% of living donor kidney transplant recipients were from Black, Asian and minority ethnic group backgrounds despite this group making up 36% of the kidney transplant waiting list.
There are multiple factors which impact on inequality of access to kidney transplants faced by people from Black, Asian and other minority ethnic groups – these include Blood and Tissue Compatibility, Lower Organ Donation Rates, Cultural and Religious Beliefs, Socioeconomic Barriers and more – at Kidney Care UK we work every day to remove and reduce the impact of these barriers on people living with kidney disease.
How Kidney Care UK is ensuring no one faces kidney disease alone
Through our dedicated Patient Support and Advocacy Service, we help people right across the country to live improved lives with kidney disease. Our dedicated services, which include welfare benefits, financial support and housing support are helping people to overcome deprivation and inequality, helping people to remain on the active transplant waiting list – overcoming barriers which are often making it harder to receive a transplant.
What needs to happen
We are calling on the new government to act on three key priorities to slow the
worrying growth of the kidney transplant waiting list:
Prevent – government and NHS leaders must take advantage of all opportunities to prevent people developing kidney disease in the first place, along with reducing the risk of progression in people diagnosed with chronic kidney disease (CKD).
Protect – people must be supported to keep their precious kidney transplants. The best possible post-transplant care can reduce the number of people who lose their transplant and go back onto the waiting list.
Provide - the whole organ donation pathway must be adequately resourced to maximise the number of transplants. This means ongoing support for raising public awareness of the need for organ donation and encouraging conversations on the subject, as well as staff education, theatre space and new technology.
By implementing these approaches in a coordinated manner we can increase organ donation rates and ultimately save more lives through transplantation:
- Fully fund all-encompassing organ donation public awareness and education campaigns in all four nations
- Fully implement the recommendations of the Government’s Organ Utilisation Group - ‘Honouring the gift of donation – utilising organs for transplant’ – across all UK regions
- Integrate organ donation education into school curricula to instil awareness and understanding from a young age
- Collaborate with community leaders, faith-based organizations, and cultural groups in a hyper-local approach to address specific concerns and promote organ donation within diverse communities
- Increase funding for education and technology to improve the quality of donated organs
- Foster a positive and diverse organ donation culture by offering support services for donor families, including counselling, financial assistance, and recognition programs
- Increase investment in transplant infrastructure and resources, including new technology and resource sharing, to ensure adequate NHS capacity to deliver on increased organ donation rates.
Alongside the very clear ethical, emotional and practical patient impacts, increasing the number of transplants will also alleviate some of the financial tensions on the NHS enabling funds to be rebalanced from dialysis towards services to help people to live healthier and longer with their kidney transplants – services which have for too long been underfunded and underprioritised. Increasing the number of transplants will also deliver positive environmental impacts through lower water and energy usage as well as generating less non-recyclable waste.
How you can help
We would appreciate your help and support to keep this issue on the health policy agenda on behalf of your constituents. Were you to consider asking a parliamentary question, writing to a Minister or requesting a debate in Parliament we would be happy to work together to influence change, whether it’s helping draft questions or letters, providing debate briefings or assisting with applications for backbench debates. We want you to join us in ensuring that no one faces kidney disease alone.
Conclusion
We urge you to consider these points and support initiatives aimed at increasing the number of kidney transplants performed. By doing so, we can improve outcomes for patients with kidney disease, reduce healthcare costs, and demonstrate our commitment to compassionate and effective healthcare delivery.
We must take action to address the continued disparity between the availability of organs for transplantation and the increasing demand for kidney transplants. This must also involve working to address the downward trend in organ donation consent/authorisation rates across the UK.