Written evidence submitted by Pancreatic Cancer UK (DEL0058)
- Before the COVID-19 pandemic, pancreatic cancer was already the deadliest of all common cancers with 1 in in 4 people dying within a month. Measures must be put into place to ensure the situation for those diagnosed with pancreatic cancer does not deteriorate either during the pandemic or as the UK enters the recovery phase.
- Cancer hubs are an essential solution to ensuring cancer care and treatment during the COVID-19 pandemic. Surgery remains the mainstay of treatment for those whose pancreatic cancer is ‘resectable’ or ‘borderline resectable’, and is the only potential cure. Therefore, surgery should be undertaken whenever possible and safe to do so. Clinicians and NHS Trusts need to consider if patients are at greater risk by reducing treatment, including surgery.
- Pancreatic cancer is characterised by late stage at diagnosis and multiple GP appointments before diagnosis. If the public are delaying presentation to primary care due to COVID-19 then we can expect more people with cancer to present at a later stage. This is of significant concern for pancreatic cancer patients, where late stage diagnosis is associated with limited treatment options and very poor prognosis.
- Significant energy and resource is needed to support diagnostic efforts, especially for those cancers that are harder to detect and have vague and non-specific symptoms. As we move into the recovery phase, the work that has begun on Rapid Diagnostic Centres (RDCs) in Cancer Alliances should be seen as a complement to the cancer hubs and RDC models of care should be accelerated, wherever possible to meet the subsequent diagnostic demand.
- Crucially, we must never return to the days where pancreatic cancer was seen as a lost cause and suffered from a legacy of neglect as a consequence. The COVID-19 pandemic must not enable this.
Pancreatic cancer: background and context
- Pancreatic cancer affects 10,000 people a year in the UK and is the deadliest common cancer. One in four people die within a month and 93% of people with pancreatic cancer die within five years of diagnosis.  This makes pancreatic cancer eight times more deadly than other common cancers.
- While other cancers have benefited from targeted government awareness initiatives, optimal diagnostic and treatment pathways, audits, and directed research strategies, survival from pancreatic cancer has stagnated while the survival gap between pancreatic cancer and other common cancers has doubled over the last 50 years.
- By 2026, more people will die from pancreatic cancer than breast cancer.
- Surgery is the only potentially curative treatment; however, only 1 in 10 people will receive surgery. Surgery with adjuvant chemotherapy offers the best chance of long-term survival, however, currently, only 50% of those who receive surgery undergo adjuvant chemotherapy. 
- Pancreatic cancer is the quickest killing cancer. 1 in 4 people with pancreatic cancer die within a month of diagnosis, rapidly progressing to 3 in 4 dying within a year.
- Faster treatment is essential for people with pancreatic cancer. Even modest delays between diagnosis and surgery, increase the risk the cancer will grow and metastasise, reducing the chance to have surgery and significantly impacting survival.
- Prior to the COVID-19 pandemic, pancreatic cancer was already a cancer emergency.
NHS treatment and care in the COVID-19 era:
- We recognise the unprecedented impact COVID-19 pandemic has had on the NHS. We welcome the response from all frontline healthcare professionals as well as coordination from NHSE and DHSC to mitigate the impact on the NHS and protect vulnerable people who may need additional care and treatment during this time.
- However, the overwhelming and unparalleled pressures on all areas of the NHS due to COVID-19 has meant that the situation may become even more desperate for pancreatic cancer patients as resources have been, and continue to be, diverted to tackle the devastating effects of this virus. Despite NHSE and other nations responses, published guidance and correspondence that cancer treatment should continue unaffected, there is variation across the country and we remain deeply concerned to hear of treatments being delayed or cancelled due to increased risks or the reduced capacity of the health service.
- It is imperative that the COVID-19 pandemic does not halt pancreatic cancer progress and push developments back further. Blanket suspension of cancer treatment and care, including for pancreatic cancer, is inappropriate, contravenes guidance, and will very likely result in poorer clinical outcomes for people with pancreatic cancer, given their already poor outcomes pre COVID-19.
Challenges of managing pancreatic cancer treatment and care during the pandemic
- In addition to the issues facing cancer patients and cancer services generally (e.g. increased risk of COVID-19 due to being immunosuppressed and/or co-morbidities; increase in service pressures through reduction in front line healthcare workers due to illness, isolation or secondment) there are a number of specific challenges for managing pancreatic cancer treatment and care during the COVID-19 pandemic, including:
- Pancreatic cancer surgery is an intensive and invasive surgery that has a high requirement for ICU beds and intensive care after surgery. A lack of ventilators and HDU/ICU beds (a knock-on effect from COVID-19) resulting in a potential reduction in surgical capacity.
- 25% people with pancreatic cancer die within a month and 50% of people with pancreatic die within 3 months of diagnosis, therefore, any delay or cancellation of treatment or supportive care will have a significant impact on the quality of life in the final months of life for people with pancreatic cancer.
- Any delay to surgery will increase the risk the cancer will grow and metastasise, preventing the patient from being eligible to have surgery. This will mean some patients will progress from curative to non-curative disease, which will significantly impact long term survival.
- NHS modelling data shows that even modest delays to surgery for aggressive cancers such as pancreatic cancer significantly impact survival. There was a 30% reduction in survival with a 6-month delay to surgery and over 17% reduction in survival for three-month delay for patients with stage 2 or 3 cancers of the bladder, lung, oesophagus, ovary, liver, pancreas and stomach. For less aggressive cancers with better prognosis, a 3-month delay was found to have minimal impact on survival. 
- Delayed diagnosis, as well as delays and cancellation of both surgery and chemotherapy due to COVID-19 will likely lead to a significant drop in the one-year survival for pancreatic cancer in 2020.
- To avoid downstream avoidable pancreatic cancer deaths, there must be sufficient resource to ensure cancer diagnostic and surgery pathways can be maintained at normal throughput.
- NHSE prioritisation criteria for systemic anti-cancer therapy (SACT) is based on the survival gain for treatment. For pancreatic cancer, the survival gains for chemotherapy are in the order of months and not years, therefore, it is likely any treatment and blanket resource prioritisation and rationalisation will impact pancreatic cancer disproportionally.
- There is significant regional variation in the impact of COVID-19 on pancreatic treatment and care across the UK with services in London and Birmingham hit the hardest by COVID-19. At one stage, surgery and other treatment was halted in Birmingham HPB MDT due to the impact of COVID-19.
- Nurses on Pancreatic Cancer UK’s Support Line have received a wide range of queries, with a larger proportion than normal from palliative patients who may not be able to have any treatment.
General principles for pancreatic cancer treatment and surgery during COVID-19 pandemic
- When assessing patients for treatment, while patient age, co-morbidities with relation to COVID-19 and the standard risk:benefit from treatment must be considered, clinicians must also consider whether they are putting patients at greater risk by reducing or delaying treatment.
- We welcome the introduction of 'COVID Free' cancer hubs where surgery (and in some cases chemotherapy/radiotherapy) could continue to take place, including a central triage point within a local cancer system and consolidation of cancer surgery on ‘clean’ sites . It is critical that the cancer hubs enable pancreatic cancer surgery to continue: surgery remains the only potentially curative treatment for those whose pancreatic cancer is ‘resectable’ or ‘borderline resectable’, therefore, surgery should be undertaken whenever possible and safe to do so. However, we know that in some places, surgery units have been closed or there has been internal resistance to clinicians undertaking surgery (for fear that resources are being used that should be held back in case of COVID-19 surges). In other areas, pancreatic cancer surgery availability has been severely limited, particularly where it has not been possible to use private capacity.
- We are currently working closely with the clinical community to monitor the impact of COVID-19 on surgical capacity and management, including the COVIDSurg and RCSEng Pancreatic Cancer COVID Survey.
- Hospital visits should be minimised via remote assessments and consideration of abbreviated treatment regimens.
- At all times, and especially now, discussions with patients are essential; they need to be informed as to their options and choices, and the risks and benefits of each and agree with the clinical decisions taken. Any deviation from the normal standard of care and the implications of this deviation must also be discussed and agreed with the patient.
Meeting pancreatic cancer treatment and care needs during the recovery phase
- Urgent cancer referrals from primary care have dropped 75% during the COVID-19 crisis, equating to 2,300 missed cancer diagnosis every week. The recent drop in cancer referrals may mean that in the near future we have a large cohort of pancreatic cancer patients coming through primary care and emergency presentation at a more symptomatic/advanced stage.
- Prompt presentation to primary care for evaluation and investigation of new symptoms remains essential in order to offer the best opportunity for curative surgery for pancreatic cancer. Any delays to presentation and diagnosis will significantly affect the opportunity to have treatment and long-term survival.
- The NHS must ensure it retains the capacity to manage a potential ‘peak’ in cancer diagnosis without long delays developing in either diagnosis or treatment. This is especially important for pancreatic cancer patients as this type of cancer is already characterised by late stage at diagnosis and multiple GP appointments before diagnosis. If the patient interval has been delayed by public avoidance of primary care or reluctance to refer GPs due to COVID-19, then we can expect more people with cancer to present at a later stage. This is of significant concern for pancreatic cancer patients: late stage diagnosis is associated with limited treatment options and very poor prognosis.
- With the potential peak in people attending primary care and possibly at a later stage due to delayed presentation, it is important that there is fast diagnosis through primary care and, accordingly, faster treatment. Rapid Diagnostic Centres (RDCs) represent a model that can ensure faster cancer diagnosis. The RDCs are geared towards diagnosing hard to detect cancers such as pancreatic cancer, which is the second most diagnosed cancer in the RDC setting. They therefore have a crucial role in acting as a complement to newly established cancer hubs during the pandemic. This important work must continue across Cancer Alliances, as we manage the crisis and enter into the recovery phase in order to reduce the potentially large cohort of patients that have built up during the worst of the pandemic.
- There also needs to be resource to ensure timely treatment for pancreatic cancer, as even modest delays to surgery for aggressive cancers such as pancreatic cancer reduce the chance to have surgery and significantly impact survival.
- A return to the normal standard of care may take months. While acute pressures may ease as we see a ‘flattening of the curve’, we have seen in Japan and parts of China that once the lockdown is relaxed, there will likely be an increase in COVID-19 cases. However, it is crucial that the NHS across all four nations successfully reinforces the message that it is indeed open for business as usual and that cancer treatment and care will continue. While we understand cancer will be included in messaging that the NHS is open to care for all patients, and not just COVID-19 patients, two additional factors need to be considered in this overall campaign:
There needs to be safety netting for all patients, but also prioritisation of cancers where fast treatment is crucial because there is usually a small window for providing treatment before the cancer progresses and active treatment is no longer possible. As we move out of the pandemic, opportunities such as the Royal College of Surgeons England Pancreatic Cancer COVID-19 Survey and other coordinated clinical initiatives, must be used as a basis for further collection and sharing of data to help mitigate the impact of COVID 19 and standardise care for pancreatic cancer.
- That people with vague and non-specific symptoms, such as weight loss, fatigue and back pain for pancreatic cancer, present to primary care.
- And not to delay presenting to primary care with any of these symptoms, despite how non-serious people may think they are when compared to the coronavirus threat.
Intelligence gathered during the pandemic on the impact of COVID-19 on pancreatic cancer patients, treatment and care
Pancreatic Cancer UK COVID-19 Patient Survey:
Pancreatic Cancer UK surveyed pancreatic cancer patients and families/carers to understand the impact of COVID-19 on pancreatic cancer treatment and care.
- 70% of survey respondents stated that their pancreatic cancer treatment or care had been impacted by coronavirus or they were worried it might be impacted. (46% reported that it had been impacted and 24% were worried it might be impacted)
- 65% of people that were worried about the impact of coronavirus, expressed concern about the impact of coronavirus on the cancellation of chemotherapy or other treatment (Chemoradiotherapy, Radiotherapy, IRE).
- 40% of respondents were concerned they would not be able to access support or comfort from friends or family members due to social distancing or self-isolation/shielding measures.
- Of the respondents who stated that their pancreatic cancer treatment or care been impacted by coronavirus, 35% reported that the their treatment and care had been impacted by their own coronavirus diagnosis
Quotes from some respondents are included below:
- ‘My mum has just this week found out the awful news that she has terminal cancer. Due to the coronavirus she cannot have her endoscopy (yet, it is delayed) so will not be able to find out any further information i.e. if she can have chemo etc. to prolong or help with pain relief, or any other information about the cancer she has. She has been told she has to wait until the end of lock down!!’
- ‘Mum diagnosed and advised cancer already spread to lungs. Her only option to for pain relief/ maybe short prolongation of life is chemotherapy which requires EUS [endoscopic ultrasound]. Until that happens no option for treatment. Extremely worried that even once lockdown lifted there will be a few weeks late. So potentially waiting 6-8 weeks just to find an answer if there is anything they can do. Can't see my family during lockdown.’
- ‘My husband has locally advanced pancreatic cancer and he has been doing chemo for 8 months now, in the hope it will get him to surgery. We are extremely worried because of the coronavirus if treatment has worked he will not be able to get the lifesaving surgery. I find it so unfair that cancer patients are being sacrificed for corona patients. This has to stop!’
- ‘We are feeling extremely sad and a little angry. Whilst we realise the threat of Coronavirus. Its unfair to keep someone with terminal cancer waiting so long to find out what if any life they have left. We keep hearing on daily Coronavirus press briefings that NHS is open for normal business, this clearly isn't the case.’
Pancreatic Cancer UK Clinical Community Intelligence:
- Cambridge: There is no ‘COVID-free’ cancer hub available in Cambridge. There is currently a waiting list for surgery across multiple cancer sites, so there is limited capacity for pancreatic cancer surgery. Cambridge only has limited private healthcare capacity.
- Birmingham: At the start of April, every tertiary care provider at UHB have been instructed to no longer accept referrals to MDT’s and with immediate effect could not offer surgery/treatments to patients.
- Oxford: Even in areas such as Oxford, with the designated Churchill Cancer Centre and ICU as a "COVID negative" site, there remains limited capacity for pancreatic surgery, with clinicians having to select cases that will likely have a good cancer prognosis.
Key questions for the inquiry:
- We ask the Health and Care Select Committee to consider the following questions during the inquiry:
- As we enter the recovery phase, how do we ensure pancreatic cancer doesn’t return to a situation of nihilism where the disease is not prioritised or invested in?
- The recent drop in cancer referrals may mean that in the near future we have a cohort of patients coming through diagnosis at a more symptomatic/advanced stage. We know for pancreatic cancer that access to fast treatment is crucial for giving the best chance of survival. How do we ensure the NHS retains the capacity to manage a potential ‘peak’ in cancer diagnosis without long delays in treatment developing?
About Pancreatic Cancer UK
- Pancreatic Cancer UK is taking on pancreatic cancer through research, support and campaigning to transform the future for people affected:
- We provide expert, personalised support and information via our Support Line (Freephone 0808 801 0707) and through a range of publications.
- We fund innovative research to find the breakthroughs that will change how we understand, diagnose and treat pancreatic cancer.
- We campaign for change; for better care, treatment and research, and for pancreatic cancer to have the recognition it needs.
 NCRAS 2006–2015, http://www.ncin.org.uk/publications/routes_to_ diagnosis for the period 2010–2014, Accessed in August 2018
 Allemani et al., 2018, the Lancet https://www.thelancet.com/journals/ lancet/article/PIIS0140–6736(17)33326–3/fulltext;
 Data analysed and adapted from
 NCRAS, Treatment 2013–2015 , http://www.ncin.org.uk/ view?rid=3460. Accessed in august 2018
 Data from NHS England Charity Forum Meeting 22nd April 2020