Kidney Cancer Patients Feeling Abandoned

Press Release issued in support of Kidney Cancer Awareness Week February 3, 2025: Kidney Cancer Patients Feeling Abandoned

New report reveals critical gaps in NHS support for kidney cancer patients, with the majority not receiving GP follow-ups or recommended Cancer Care Reviews.

• Two-fifths of kidney cancer patients were told about their diagnosis in a way that was not ‘appropriate’.
• Over half of UK kidney cancer patients reported no follow-up contact from their GP or practice nurse after initial diagnosis.
• Nearly two-thirds did not receive a GP Cancer Care Review 12 months post-diagnosis – going against standards set out by NHS England.
• This concerning lack of communication at crucial stages throughout the pathway means kidney cancer patients are unable to make informed decisions about their ongoing care – heightening feelings of fear and anxiety during an already distressing time.

Sunday 2^nd February 2025: A new report[i] released today by Kidney Cancer UK – the UK’s leading kidney cancer charity – has uncovered significant challenges facing kidney cancer patients in the UK –highlighting worrying gaps in NHS support following the shock of diagnosis and throughout their cancer journey. These findings come as kidney cancer becomes the sixth most common cancer – up from seventh in 2024 – in men and women in the UK.

The report reveals that over half (55%) of kidney cancer patients receive no GP or practice nurse follow-up after diagnosis, leaving them without crucial opportunities to address concerns, understand treatment options, or gain reassurance.

Information and support care is particularly important for those being diagnosed at a later stage – which is the case for more than a quarter (26%) who were diagnosed at stage 3. A lack of awareness around kidney cancer, and its nature of presenting more subtle symptoms, means that more than half (53%) of patients discovered they had kidney cancer during medical scans or tests unrelated to kidney cancer, with two fifths (39%) reporting no symptoms prior to diagnosis.

Whether a patient had symptoms or did not, news of a diagnosis should always be delivered sensitively, however, two-fifths (39%) of kidney cancer patients were told about their diagnosis in a way that was not ‘appropriate’.

This significant information and support gap between healthcare providers and patients continues upon starting treatment, with almost two-fifths (38%) of patients remaining unaware of their cancer’s grade. This could influence treatment options, further reiterating the need for information.

This lack of support extends well into the patient’s journey, with many kidney cancer patients reporting a clear lack of guidance once they had undergone treatment. Nearly two-thirds (62%) did not receive a Cancer Care Review with their GP 12 months after receiving acute treatment – according to standards set out by NHS England- which are essential in giving patients the space to discuss their treatments and emotional and practical challenges. The absence of these reviews can severely impact a patient’s ability to return to ‘normality’.

These discussions between the person and their healthcare professional cover a wide range of issues, including the experience of living with cancer, any concerns or fears, and the help available – such as online support groups and charity-run counselling sessions. They also provide essential information on how to begin supported self-management of their cancer, navigating the financial implications of cancer, and returning to work.

This absence of adequate support takes a toll on patients’ emotional wellbeing, with 28% experiencing low mood or anxiety during recovery and 29% living in fear of cancer recurrence. As kidney cancer cases in the UK are expected to increase by 15% by 2040, providing robust NHS support from the point of diagnosis through to recovery is essential to reducing the impact of the disease on patients’ quality of life.

Professor Grant Stewart, (left) Professor of Surgical Oncology at University of Cambridge and Consultant Urologist at Addenbrooke’s Hospital, Cambridge says: “It’s saddening to hear that many patients aren’t feeling supported following a kidney cancer diagnosis. Follow up care after cancer treatment ends is essential to helping the patient to get back to a normal way of life – so it’s imperative that support is provided.

As medical professionals, we have an important role to offer counsel to patients at every stage of their cancer journey and direct them to charities like Kidney Cancer UK who can provide additional support if and when they require it.”

Malcolm Packer, (right)Chief Executive Officer at Kidney Cancer UK, says: “A cancer diagnosis often leaves patients in shock, requiring timely information and support beyond generic pamphlets to help them process and make informed decisions.

This is imperative in helping the individual with cancer come to terms with their diagnosis and feel confident they are taking the necessary steps to live with it.

“The results from our latest survey underscore the urgent need for more proactive, patient-centred approaches in kidney cancer support – especially with the incidence of kidney cancer rising and predicted to continue to rise, in the coming years.

“Kidney Cancer UK is a lifeline for many individuals living with and affected by kidney cancer, so it is imperative that healthcare professionals signpost patients to our services such as our Support Line and counselling programme to provide them with the vital support they need during an incredibly challenging period of their lives.”

[i] This is the eleventh and only UK-focused, annual survey of kidney cancer patients. It ran online from September 14^th to October 24^th and received 765 responses, 592 of those were completed surveys from kidney cancer patients in the UK.

To find out more about Kidney Cancer Awareness Week 2025 and read more blogs go here.