Patient Survey 10-Year Review

Kidney Cancer UK is delighted to present our 10-Year Review of the Kidney Cancer UK Patient Survey results from 2013 to 2023 with over 3,200 patient responses.

Click to read report

For the last decade, Kidney Cancer UK has carried out an annual survey of kidney cancer patients, focusing on their experience of services throughout the UK.  This has allowed us to produce a report each year that is the focus of Kidney Cancer Awareness Week each February.  Having collected ten years of data, we have now looked back over the entire period to see how far services for kidney cancer patients have come.

Identifying patients

Identifying patients remains a challenge with little improvement shown throughout the decade.

Symptoms are hard for GPs to interpret.  There is no easy, cheap test for kidney cancer.  Consequently, one in four patients who have kidney cancer are initially diagnosed with a different condition.  There has been no improvement for the last four years.

Over the last nine years, almost half of patients have been diagnosed incidentally whilst having a scan for an unrelated condition.  This has shown no improvement.

Specialist diagnosis

Specialist diagnosis is carried out effectively. However, the results of the Kidney Cancer UK Annual Patient Survey consistently show that for the last six years, around 45% of kidney cancer patients have reached stage 3 or 4 by the time they are diagnosed, making effective treatment difficult. This may be due to late referral for specialist diagnosis.

Treatment options

Treatment options, and their potential to treat kidney cancer effectively, have improved considerably over the last decade, but access has increased more slowly. This may be due to:

• variable- or under-utilisation in many areas, causing unwarranted variations
• limitations in diagnosis leading to a high proportion of patients who are not identified until they have reached stage 3 or 4.

Patient support and information

Patient support and information have suffered as a result of the constant pressure on the NHS and on NHS staff, and have shown little improvement in the last decade.

The survey consistently shows that patient information is variable. Some aspects of treatment, e.g. SACT and its side effects, are well-supported by information.  However, information needs to be improved and made more accessible overall.  The risk is that whilst most patients say their views are taken into consideration when considering treatment, they may not have all the information they need to make fully informed decisions.

Of particular concern is that the survey shows that one in four patients are still not given the name of a Clinical Nurse Specialist.  This is despite some improvement up to 2017, after which

the proportion has plateaued. Also, relatively few patients are offered psychological support when they need it, including counselling.

Overall, the annual Kidney Cancer UK Patient Survey suggests:

• there have been substantial improvements in treatment potential, but this is not being fully realised due to difficulties in patient identification and slow uptake;
• ten years of survey responses show that in general the NHS is not providing adequate information and support to patients, and needs to improve sign-posting to other reputable sources, such as national patient organisations.

Thank you to the 1000’s of patients who took the time to complete the survey. You made a difference.

Read the full report here