Transplant care in the UK: a patient perspective

A new Kidney Care UK report gives a unique insight in transplant care in the UK in 2024 from the patient viewpoint.

It reflects a world where kidney transplantation is an extraordinary and successful treatment keeping 44,900 people alive and we celebrate that.

It reveals key areas for improvement, and we are calling on the government and policy makers to act on these so that more people can benefit from a transplant and live well with it.

Sadly, this report comes at a time when there are 6,250 people waiting for a kidney transplant and with 22 people a day facing kidney failure action is needed now as well as for the future.

We are calling on the new government to act on three key priorities to slow the growth of the kidney transplant waiting list:

Prevent

Government and NHS leaders must take advantage of the 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

Providing the best possible post-transplant care can reduce the number of people who lose their transplant and go back onto the waiting list.

Provide

Resourcing the whole organ donation pathway to maximise number of transplants 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.

The report shares the results of our survey of 670 people with kidney disease, either waiting for or having received a transplant, combined with national data (including UK Renal Registry, Getting it Right First Time and NHS Blood Transplant statistics). It identifies opportunities for change in transplant care so that everyone who may benefit from a kidney transplant is supported to do so, for as long as possible. These opportunities may be summarised into three key challenges.

Challenge 1 - Providing excellent care and support for all

• Our survey found unacceptable variation in the care people receive. Stark differences were apparent in access to support including mental health support and physiotherapy.
• National data highlights the variety between units in terms of how likely a person is to receive a living donation, or be waitlisted, before beginning dialysis.
• There is also variation in the assessments required as part of the workup and which patients are labelled as too high risk for transplant, meaning access to transplant is dependent in part on a postcode lottery. Notably, there is a strong case for updating current cardiac assessment processes.

Challenge 2 - Meeting people’s emotional and psychological health needs

Support with feelings and/or mental health was the lowest rated aspect of post-transplant support in our survey. Four in ten people rated it as poor or very poor. Patients also reported unmet need for support whilst on the waiting list. Nearly one in five people in our survey had been called for a transplant that did not go ahead. For some, this was particularly challenging to cope with and support for this was unavailable. Addressing mental wellbeing can help people to achieve better physical health outcomes and improve quality of life for people receiving a kidney transplant.

Challenge 3 - Financial challenges of kidney transplantation

Responses to our survey show that, at a time when people should focus on maintaining their health, they are worrying about finances. Specific challenges included:

• Cost of travel and parking for multiple appointments.
• Loss of income during the recovery from surgery, with Statutory Sick Pay (SSP) providing inadequate support. Immediate loss of non-means tested disability benefits following a transplant, despite an ongoing need for support to pay for the additional costs of disability.
• In England, meeting the cost of prescription charges for medicines essential for preserving the transplant.

The experience of Kidney Care UK’s Patient Support & Advocacy team highlights how people in the most economically deprived groups are at high risk of exclusion from transplantation. Insecure housing is a barrier and the stress of facing poverty means people do not have the capacity to engage with the often complicated transplantation process.

We would like to thank everyone affected by kidney disease who shared their views and experience with us, as well as the clinical experts who provided insight and guided our recommendations for action. This report shines a light on people’s experience of being assessed and joining the waiting list as well as support received after a transplant. It highlights the incredible care delivered by staff within the transplant service, but also addresses gaps in provision of support and the unmet needs of individuals. Our ultimate aim is for more successful kidney transplants and a better experience for people who face this life-changing experience.

Kidney Care UK is ready to work with government, national and local health bodies to bring about this change.