Our open letter to Jo Churchill, Cancer Minister for England
We've written to Jo Churchill, the minister with responsibility for cancer in England, sharing our concerns about how people with pancreatic cancer are being impacted by the pandemic.
11th February 2021
Pancreatic cancer treatment and care during COVID-19 and request to meet
I am writing to raise concerns about the impact of the COVID-19 pandemic on pancreatic cancer treatment and care, and to request a meeting to discuss how we can work together to alleviate it.
Pancreatic cancer is the least survivable and the quickest killing cancer. Only 1 in 4 people diagnosed with pancreatic cancer survive beyond a year and less than 7% of those affected in England will survive for 5 years or more. Timely and efficient treatment is absolutely essential. There is no time to wait.
Despite this, at the height of the first wave of the pandemic, surgery for pancreatic cancer was reduced to 20% of normal capacity, with 17-25% of units having no capacity at all. Diagnostic services were affected too, with endoscopic ultrasound capacity operating at 14-22% of normal levels. Referrals were down: 5,623 people saw a specialist for suspected upper GI cancer in April 2020, compared to 14,517 in March and 16,215 in February 2020. And heartbreakingly, palliative therapy for pancreatic cancer was reduced to 30% of normal capacity, while we received reports of patients receiving no support at all between diagnosis and death.
At that time and in response to a mounting body of evidence, Pancreatic Cancer UK launched its No Time to Wait campaign, supported by almost 62,000 people. We wrote to all Cancer Alliances in England to ascertain how they were planning to restore and maintain local pancreatic cancer services, urging them to focus on and prioritise pancreatic cancer due to the poor outcomes and the lack of time that many of these patients have. We learned of many examples of innovation and good practice introduced in response to the pandemic and during the more recent second wave, we collated and shared these findings with Cancer Alliances to aid them further in the planning and delivery of pancreatic cancer services. We have also been raising our concerns about the impact of the pandemic with colleagues at meetings of the Cancer Recovery Taskforce, at which we represent Less Survivable Cancers.
Recently, however, new data shows us that issues experienced during the first wave are beginning to occur again. As of the 11th February, we have received responses from clinicians working across 13 of the 21 Cancer Alliances in England: a mixture of surgeons, oncologists and gastroenterologists. 71% of respondents reported that the current wave of the COVID-19 pandemic is currently restricting the number of operations for pancreatic cancer and, shockingly, 1 in 3 reported that they currently have between 0 and 25% capacity for pancreatic cancer surgery. Only 1 in 6 clinicians (17%) reported that they have normal capacity for pancreatic cancer surgery.
During the pandemic, we have received reports of people with pancreatic cancer receiving no support at all between diagnosis and death.
Additionally, 29% of professionals told us that the pandemic is currently restricting the number of patients that normally have access to chemotherapy in their area and clinical trials for pancreatic cancer are also suffering. 40% of health professionals told us that less than 50% of clinical trials for pancreatic cancer in their area were open, and 1 in 3 reported that patient recruitment for pancreatic cancer trials was at 0-25% of pre-pandemic levels.
Despite the NHS’s best efforts to deal with the first wave of the pandemic and to manage the second, we remain very concerned. NHS modelling data shows that delays to treatment and care for pancreatic cancer patients have significant and negative outcomes: a 3-month delay to surgery for pancreatic cancer can have up to an 18% reduction in survival, and a delay of 6 months would lead to a 20-35% reduction in survival.
Before the pandemic, five-year survival of pancreatic cancer in the UK already lagged behind the rest of the world, with the UK ranking 29th out of 33 countries with comparable data. It is imperative that the pandemic does not have the lasting effect of halting pancreatic cancer progress, leaving us even further adrift.
We believe that support for and investment into three key areas of work outlined below would have a significant impact on current pancreatic cancer treatment and care. They would also have a positive impact on o one- and five-year survival:
- In response to the pandemic, we have repeatedly called for pancreatic cancer specific data from colleagues at NHSE and on the Cancer Recovery Taskforce. Currently this data is aggregated into one data set that includes too many cancers to be meaningful for us. Getting access to disaggregated pancreatic cancer data would enable us to understand the true impact of the pandemic on the disease and help to influence and support where resources are needed most.
- We welcome the roll–out and acceleration of Rapid Diagnostic Centres. These hold real promise for patients with vague and non-specific symptoms and will play a vital role in delivering earlier and faster diagnoses as well as a better experience of care. But we would like to go further and see the roll–out of, and investment into, RDC models specifically for pancreatic cancer. We know that models of this kind are currently in development such as in Peninsula and Lancashire and South Cumbria Cancer Alliances, and want to see widespread implementation taking place across the country.
- We would welcome your endorsement of, and support with, implementing an optimal care pathway for pancreatic cancer. Pathways such as these exist already for lung, bowel, prostate and oesophago-gastric cancer. Because pancreatic cancer is such an aggressive disease that progresses quickly, an efficient and timely pathway is needed from diagnosis to treatment to ensure treatment can be provided before the disease progresses further and treatment options are either reduced or no longer possible. Not only does pancreatic cancer have low survival rates and a poor quality of life, there is also significant variation in care and treatment (despite NICE guidance), and a lack of critical datasets. An optimal care pathway, created in partnership with the clinical community and patients, would help to reduce variation, level the playing field for all patients in England regardless of where they live, and improve care and treatment at every step.
I would welcome a further discussion with you about how we can work together on these issues and how we can do our very best, collectively, to secure long–lasting change and significant improvements in care, treatment, and ultimately survival for people with pancreatic cancer.
Please do contact Emily Waller, Public Affairs and Policy Manager on firstname.lastname@example.org, who will be more than happy to make the necessary arrangements.
Pancreatic Cancer UK