Written evidence submitted by Cancer52 (CBP0045)

About Cancer52

 

Cancer52 is a charity which represents nearly 100 charities working to support the 150,000 people diagnosed with rare and less common cancers every year. Cancer52 members represent over £220 million of charitable spend and range in size from tiny, volunteer run charities with incomes of only thousands, to large million-pound organisations, which invest heavily in research and support services.

 

Introduction

Rare and less common cancers are all cancers except the four most common cancers (breast, prostate, bowel and lung). Rare cancers have an incidence of less than 6 per 100,000 population and include cancers such as bone, liver, gallbladder and eye. Less common cancers have an incidence greater than 6 per 100,000 but do not include the four most common. Less common cancers include uterus, melanoma, pancreatic, ovarian and Non-Hodgkin lymphoma. There are hundreds of rare and less common cancers.

 

In 2017, there were 366,457 new cancer cases in the UK. Of these 53% were breast, prostate, lung and bowel cancers, and 47% were rare and less common cancers, as defined by Cancer52. Deaths from rare or less common cancers in England are more common than the four most common cancers combined.[1] The percentage of deaths from rare or less common cancers has risen from 53% in 2001 to 55% in 2017.[2]

 

Impact of the pandemic

The pandemic has had a negative impact on people with rare and less common cancers. Cancer52 ran two surveys of people living with rare and less common cancers over the pandemic, one in summer 2020 and another over the winter months of December 2020 and January 2021.

The surveys found that

        People diagnosed since the pandemic faced delays - either because they were concerned about contacting their GP or test and scans had been delayed.

        One in ten people who had received treatment since the pandemic began had not had the type of treatment they were expecting to receive.

        One in ten people had not been able to access their GP during the pandemic. 20% had been able to see their GP in person and 70% had been able to have a virtual or telephone appointment.

        People with rare and less common cancers need access to support, given the impact of the pandemic on all aspects of their lives. In particular, people need emotional or psychological support to manage the mental health impact issues like shielding and delays have caused.

We are also aware that there are a substantial number of people missing from the system who have not presented to the health service with symptoms of cancer. It is essential that these people are persuaded to come forward so that cancer can be ruled in or out.

Inquiry Questions

 

Below we have responded to the inquiry questions where we have insight to offer.

        What is the anticipated size of the backlog and pent-up demand from patients for different healthcare services including, for example, elective surgery; mental health services; cancer services; GP services; and more widely across the healthcare system?

We are aware that the Cancer Team within NHS England has carried out work to estimate the number of people missing from the system who may have cancer but have failed to come forward due to the pandemic. This number sits at around 30,000 people.

Cancer52 would like to see further work carried out to break this figure down beyond top level cancer types. Understanding what types of cancers may have been impacted by the pandemic will allow NHS services and their third sector partners (such as our members) to plan accordingly.  It also means communications and marketing activity aimed at encouraging people to come forward can be properly tailored. Data needs to be disaggregated beyond categories such as gynaecological cancers. These categories often include many different types of cancers with differing symptoms, treatment pathways and outcomes. They do not provide the detailed picture needed to help address the backlog.

        What positive lessons can be learnt from how healthcare services have been redesigned during the pandemic? How could this support the future work of the NHS and care services?

In the late Autumn of 2020, Cancer52 in partnership with Keeping Up With Cancer hosted a roundtable to discuss the positive changes in cancer care that have resulted from the pandemic. Stakeholders included those from cancer charities, the pharmaceutical industry, NHS England and health professionals. Several positive changes in care and support were identified and captured in a report. The report, which includes case study examples and short-term and long-term recommendations, can be found here:

https://mcusercontent.com/68b588bc5847cde662b4ac613/files/df4a4396-5156-b2b9-0a9c-4a51808bb5f3/The_impact_of_the_COVID_19_pandemic_on_people_with_rare_and_less_common_cancers_a_report_by_KUWC_and_Cancer52_FINAL.pdf

 

Sept 2021

 

 

 

 

 


[1]  Cancer52 (2020). Getting a Better Deal for Rare and Less Common Cancers. Available at: https://www.cancer52.org.uk/ single-post/2019/07/10/-getting-a-better-deal-for-people-with-rare-and-less-common-cancers-what-we-can-learn-fro. Accessed: May 2021

[2]  Cancer52 (2020). Getting a Better Deal for Rare and Less Common Cancers. Available at: https://www.cancer52.org.uk/ single-post/2019/07/10/-getting-a-better-deal-for-people-with-rare-and-less-common-cancers-what-we-can-learn-fro. Accessed: May 2021