What can we learn from the Cancer Patient Experience Survey data?

The annual Cancer Patient Experience Survey (CPES) is a wide-ranging survey that provides valuable insight into the care experienced by people with cancer across England. National data for 2019 was released late last week. Capturing the experiences of more than 65,000 people with cancer – including those with blood cancer – the newly released survey data helps us monitor progress in cancer care.

The new data tells us that 25% of people with blood cancer had to visit their GP three or more times before receiving a diagnosis. Although this is a slight improvement over previous years (28% for both 2017 and 2018), blood cancer continues to compare poorly with other types of cancer such as breast and skin cancer (4% and 9% respectively). This is a persistent issue: if people are forced to make several visits to their GP before being diagnosed, they may not be able to start treatment as quickly as those diagnosed earlier, potentially leading to poorer outcomes.

The newly released data also provides insight into other aspects of treatment and care outside of diagnosis. For example, like in recent years, people with blood cancer were found to be much less likely to understand the explanation given to them of their condition.

Just 60% of blood cancer patients understood their provided explanation compared with 79% of colorectal cancer patients and 77% of breast cancer patients. It’s also concerning that many more people with blood cancer were not told the possible side-effects of their treatment in a way they could understand. Only 67% of people with blood cancer felt they understood the potential side-effects of their treatment, compared to 72% of breast cancer patients and 73% of colorectal cancer patients.

Blood cancer is complicated and improvements to treatment and care are often slow and challenging. As such, although the new CPES data shows small improvements in some areas, there’s still further to go to ensure people with blood cancer are diagnosed promptly and receive a clear and complete explanation of their diagnosis and treatment.

While any improvements are positive, the fact remains that in some areas, advances are painfully slow or non-existent. It is also important to recognise that while some improvements have been made, blood cancer often compares very poorly with other cancer types. More work will need to be done.

The current COVID-19 pandemic will likely have a huge impact on blood cancer treatment and care. We know from our ongoing COVID-19 patient survey for example that 54% of people affected by blood cancer have seen their appointments and treatment impacted by the pandemic. We also know from NHS England statistics that urgent cancer referrals have seen a 60 percent drop due to COVID-19 disruptions.

Additionally, recent research by Cancer Research UK estimated that at the start of June, 2 million people in the UK were awaiting cancer screening, tests, and treatment since the lockdown began. We also know from our recent survey of blood cancer specialists that over 70% of respondents have warned they’re seeing fewer new patients than before the pandemic began.

There were many challenges around blood cancer treatment and care prior to COVID-19 – the current pandemic will likely exacerbate these issues even further. Any drop in the number of people diagnosed and receiving treatment today will lead to increased demand on the NHS and potentially poorer outcomes for people with blood cancer in the near future.

All too often we hear stories from people affected by blood cancer of avoidable delays to diagnosis with consequences for their treatment and potential survival. Blood Cancer UK continues to raise awareness of blood cancer with the clinical community and decision makers within the Government and NHS.

Late last year we launched ‘End the Delays’ – a public campaign to ensure that everyone with blood cancer receives a prompt diagnosis. At the same time, we also published our research and findings on delayed diagnosis in a report entitled ‘Delays Expected’; received over 10,000 signatures to our e-petition demanding change; and published a symptoms guide to help people recognise the signs and symptoms of blood cancer.

If you’ve been affected by delays to diagnosis – particularly due to the COVID-19 pandemic – we would like to hear from you. Share your experience with us at [email protected] or participate in our short COVID-19 survey.