New government urged to act on kidney transplant waiting list

A new Kidney Care UK report has highlighted the government must take urgent action to prevent progress on increasing rates of transplantation, achieved before the pandemic, from being lost.

The call comes as new data shows there are currently 6,250 people waiting for a kidney transplant in the UK, the highest the number has been in a decade.

In the UK, someone is diagnosed with kidney failure every 65 minutes, and this is only set to rise further over the next decade because of an increase in risk factors such as diabetes, high blood pressure, and an ageing population.

We are calling on the government to take bold action in three key areas to slow the growth of the kidney transplant waiting list:

  • Prevent - Government and NHS leaders must reduce the number of people developing kidney disease by focusing on measures to reduce avoidable ill health, as well as increasing the early identification and treatment of chronic kidney disease (CKD).
  • Protect - The NHS needs to provide the best possible care before and after transplant (for physical and mental health), reducing the number of people who lose their transplant and have to go back on to the waiting list.
  • Provide - We need an effort to improve awareness around the need for organ donation, NHS staff education, investment in transplant technology and access to heater space for operations to take place.
We’re extremely concerned and saddened that the waiting list for kidney transplants is at the longest it has been in a decade. There were 30% fewer transplants carried out in 2020-21, in the midst of the pandemic, compared to the previous year. In London alone, 1,753 people are on the kidney waiting list. The change in law to an opt-out system for organ donation is just one part of the story when it comes to the transformation required in bringing down the waiting list. As the situation continues to worsen and the waiting list continues to rise this cannot be ignored; we need urgent action now.
Fiona Loud, Policy Director at Kidney Care UK

Challenges for people on the waiting list and those who have received transplants

There are a range of challenges facing people waiting for a kidney transplants, including serious equalities for people in certain groups.

The average wait for a kidney transplant is around 500 days, and for people from Black and South Asian communities it can be even longer. The longer someone waits for a transplant, the further their remaining kidney function declines and the more unwell they become.

We found unacceptable variation in the tests necessary to be considered for the transplant waiting list and inconsistencies in who is labelled in high risk. People who are high risk require more testing before being considered for listing, and one in three people reported that waiting times for tests made it more difficult to get on the waiting list or have a transplant. This has resulted in a postcode lottery when it comes to accessing a transplant.

Four in ten people rated the support they received with their mental health after their transplant as poor or very poor. Waiting for a transplant can also present challenges to mental wellbeing. Nearly one in five people we asked had been called for a transplant that did not go ahead, a difficult experience to cope with for some.

Finally the financial impact of transplantation needs to be understood and addressed by the NHS and the government. At a time when people should be focusing on their health they are often worrying about their finances. Challenges include cost of travel to appointments, loss of income while recovering from surgery, and the loss of non-means tested disability benefits following a transplant. In England, people must also pay prescription charges for medicines that are essential to preserving their transplant.

Kidney Care UK calls for action on kidney transplantation

There are more than 44,900 people living their lives in the UK right now thanks to a kidney transplant. But while a transplant can be a life-changing treatment for kidney failure, it is not a cure.

Transplant recipients need the right support so that they can get the most benefit from their treatment for as long as possible.

We need the government to prevent more people developing kidney disease, the NHS to provide the best possible care, and improvements in theatre spaces, technology, education and awareness, or we risk more people dying before they get the chance to receive that life-changing call.

Read Kidney Care UK's Transplant report 2024