World Cancer Day provides an opportunity to raise awareness of key issues faced by those that experience cancer, and in England, we’ve seen Covid-19 have a significant impact on the delivery of cancer care. NHS staff worked hard to clear much of the backlog created by an initial lockdown by autumn 2020, but a new national lockdown in 2021 means that longer waiting times are likely to persist. Inevitably, some cancer care is starting later, increasing the risk of potential harm from treatment being delayed.
Covid-19 will almost certainly create a lasting impact on the health system’s delivery requirements and the health of the population in England. And, the impact is likely to be different for different groups of people. Research tells us that there is variation in how people from different ethnic groups interact with and experience cancer services. Additionally, data tells us that BAME groups experience worse outcomes from Covid-19, with a recent report from Public Health England bringing attention to the contribution of socio-economic status and cultural and structural racism to ethnic disparities.
The impacts of Covid-19 are widening health inequalities. So how can we best understand the extent of the effect of Covid-19 on cancer care? We feel strongly that we must continue to listen to and learn directly from the experiences of people with cancer. World Cancer Day provides an opportunity to reflect on these experiences.
One important source of insight into people’s experience of living with cancer is the National Cancer Patient Experience Survey. Each year over 60,000 people in England respond to the patient survey, providing an understanding of the quality of cancer care. The survey explores people’s experiences from finding out they have cancer, to having treatment, and support afterwards.
The last iteration of the survey was published in June 2020, with results based on the experiences of cancer care in 2019 (pre-Covid-19). Results from the survey show that over a five-year period, white patients have responded more positively than patients from other ethnic groups with regard to communication with hospital staff. For example, when asked about receiving the results of their diagnostic tests, the proportion of white patients that said the results were explained in a completely understandable way was on average 80%. In contrast, the average was 69% for patients of black and/or mixed ethnicity. Similar findings were seen regarding treatment options being completely explained (83% average for white patients; 78% average for BAME patients) and getting understandable answers to important questions that patients had (89% average for white patients; 80% average for BAME patients).
Similarly, only 53% of white patients said they were definitely given enough support from health or social services during treatment, but this was even worse for Asian (45%) and black patients (42%).
Results indicate that before Covid-19, BAME patients generally reported more negative experiences than white patients did. This is particularly true regarding communication with healthcare professionals and involvement in care, both key components of person centred care.
As many people living with cancer are considered vulnerable, Covid-19 has meant an increase in virtual appointments. The move to more virtual interactions will undoubtedly have been positive for many people, but some will have struggled with this new way of communicating with health professionals, leading to disruption in their care. The uncertainty and difficulties with orientating a new approach to care, coupled with the wider impact of Covid-19 will inevitably have affected people’s mental health, and many will have sought support from charities. However, Covid-19 has placed a strain on funding, and with difficult decisions being made about what support services and research can continue on a reduced income, there are concerns that this will likely increase the disparity in care.
It is clear that as services evolve during and after this pandemic, we must continue to listen to people about their experiences and use the vital insights to understand how providers of cancer care adapt to this new challenging environment. This notably includes highlighting the experiences of people from different ethnic groups.
At Picker, we carry out the Cancer Patient Experience Survey and the U16 Cancer Patient Experience Survey (which runs for the first time in 2021) on behalf of NHS England and NHS Improvement. This puts us in the privileged position of gathering insights from people living with cancer from birth right through adulthood. We’ll use findings from these surveys to increase awareness of differences in experiences and to support providers to understand and tackle inequalities, driving lasting change that improves cancer care experiences for staff, service users and their families.
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