What did people tell us about cancer services during the pandemic?

Healthwatch England reports on its recent insight on cancer care.

In 2019, Healthwatch engaged over 40,000 people across England to find out what people wanted from the next ten years of the NHS. We heard from over 5000 people with cancer, who shared largely positive experiences of care. 

61% of people with cancer who shared their experiences with us in 2019 described their experience of support positively. Reasons for this include timeliness of diagnosis and treatment, access to rehabilitation and support courses, complementary therapies that support general wellbeing, rehab nurses, annual check-ups, good information and good communication from professionals. However, people shared experiences of long waits for referrals and appointments to specialist services. 

Before the pandemic, the majority of feedback we heard about cancer services was positive. However, in 2021 and 2022, feedback was largely negative. Between April 2021 and March 2022, Healthwatch England heard directly from 684 people about their experiences of cancer services. Just over half (53%) of these experiences were broadly negative, 26% were broadly positive, and 6% were mixed. We heard about delayed and cancelled screening and treatment, experiences of misdiagnosis, limited information and support during and after treatment, and limited support during end of life. We also heard about health inequalities for people accessing cancer screening and treatment, including people with language barriers and people with learning disabilities.

In 2019, feedback on cancer services was largely positive and feedback on other services was largely negative; 43% of feedback on cancer in April 2019 – March 2020 was positive, compared to 9% of the feedback across all services. However, in the same period in 2021/22, positive sentiment around cancer services had fallen by nearly 50%. Only one in four people told us they had a positive experience of cancer services in 2021/22.

• Long waiting times to speak to GPs during the pandemic meant longer waits for referrals to cancer diagnostic and treatment services.
• A concerning number of the people who contacted us shared that their cancer had been initially misdiagnosed by their GP because their GP didn’t take their concerns seriously.
• Routine screening and tests were cancelled during the pandemic, and there were long waiting times to hear the results.
• People experienced long waits for treatment for their cancer.
• Once discharged, people aren’t offered adequate information or follow-up support.
• We heard from people with language barriers, people with learning disabilities and women about specific issues these groups have when accessing cancer services.