Guidance: respond to the Cancer Plan consultation

Which cancer risk factors should the government and the NHS focus on to improve prevention? (Select the 3 most important risk factors)

Our suggested priorities:

1. Tobacco
2. Obesity
3. Physical inactivity

Things you might want to consider putting in your response:

• Early diagnosis of pancreatic cancer presents the biggest opportunity to help people stay healthy and independent for longer.
• There are also a range of risk factors the government should be focusing on to improve prevention.
• Pancreatic cancer risk factors include family history of pancreatic cancer, type 2 diabetes and pancreatitis, smoking, obesity, diet, and heavy alcohol use.

We’re asking the Government to:

• Increase investment in campaigns and initiatives that raise awareness of pancreatic cancer risk factors and encourage the public to reduce their exposure to risk factors.
• Invest in the development of surveillance for people with risk factors for pancreatic cancer and work with the NHS to improve early detection

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• Do you think more needs to be done to raise awareness of the risk factors of pancreatic cancer?
• If you or a loved one was affected by pancreatic cancer, would you have benefited from a surveillance programme for people at more risk?

What actions should the Government and the NHS take to help diagnose cancer at an earlier stage? (Select the 3 actions that would have the most impact)

Our suggested actions:

1. Support timely and effective referrals from primary care (for example, by GPs)
2. Develop and expand interventions targeted at people most at risk of developing certain cancers
3. Increase support for research and innovation

Things you might want to consider putting in your response:

• Most people with pancreatic cancer visit to their GP multiple times before being referred on for the right investigations. They often experience long delays before they are diagnosed.
• 80% of people with pancreatic cancer are diagnosed at a late stage – too late to survive. More than half of people with pancreatic cancer die within three months of diagnosis.
• There are currently no national screening programmes available for pancreatic cancer.
• Pancreatic cancer receives just 3% of the UK cancer research budget.
• GPs currently have no simple test that can allow them to detect pancreatic cancer early.

We’re asking the Government to:

• Review the cancer diagnostic workforce and processes for diagnosing pancreatic cancer earlier, including through community diagnostic hubs.
• Urge the National Institute for Clinical Excellent (NICE) to review the guidelines for suspected cancer recognition and referral (NG12) to make sure more people with pancreatic cancer symptoms are spotted and referred earlier.
• Invest in and roll-out surveillance programmes for people with family history of pancreatic cancer and hereditary pancreatitis.
• Invest in and roll out targeted interventions among people with new-onset diabetes. Around half of people diagnosed with pancreatic cancer have new onset diabetes, making this a high-risk group for pancreatic cancer.
• Invest in the roll-out and implementation of new blood, urine or breath biomarker tests within suspected cancer pathways, such as the Imperial VAPOR breath test
• Increase UK research investment to at least £35 million every year for the next 20 years

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• If you or a loved one was affected by pancreatic cancer, what were the challenges you faced in diagnosis?
• Why do you think there needs to be more research into pancreatic cancer?
• What would you like to have been achieved by pancreatic cancer research in the future?

What actions should the government and the NHS take to improve access to cancer services and the quality of cancer treatment that patients receive? (Select the 3 actions that would have the most impact) 

 Our suggested actions: 

1. Increase treatment capacity (including workforce) 

1. Review and update treatment and management guidelines to improve pathways (processes of care) and efficiency 

1. Increase the availability of physical and mental health interventions before and during cancer treatment 

Things you might want to consider putting in your response: 

• 7 in 10 people with pancreatic cancer never receive treatment – not even chemotherapy.  

• People with pancreatic cancer are experiencing long waits for treatment. Only 35% of people get treatment within the 62 day-NHS operational treatment target. 

• People with pancreatic cancer are missing out on the support of vital members of the cancer workforce such as specialist nurses, dietitians, palliative care professionals and cancer care coordinators. 

 We’re asking the Government to: 

• Implement a faster, fairer and funded pathway for the diagnosis, treatment and care of everyone facing pancreatic cancer, based on the recommendations of Pancreatic Cancer UK’s Optimal Care Pathway initiative. 

• Introduce a dedicated faster treatment waiting time standard for cancers with fast progression 

• Review the treatment and care workforce for pancreatic cancer to ensure that everyone with pancreatic cancer gets the advice, care and support they need from dedicated expert professionals from the point of diagnosis. 

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer: 

• What challenges did you or a loved one face in getting the right treatment and care? 

• Did you feel that you were well supported after you or your loved one was diagnosed? 

What can the government and the NHS do to improve the support that people diagnosed with cancer, treated for cancer, and living with and beyond cancer receive? (Select the 3 actions that would have the most impact)

Our suggested actions:

1. Provide more comprehensive, integrated and personalised support after an individual receives a cancer diagnosis and (if applicable) after treatment
2. Increase the number and availability of cancer co-ordinators, clinical nurse specialists and other staff who support patients
3. Improve access to high-quality, supportive palliative and end-of-life care for patients with incurable cancer

Things you might want to consider putting in your response:

• People with pancreatic cancer are missing out on the vital support of key members of the cancer workforce such as specialist nurses, dietitians, palliative care professionals and cancer care coordinators.
• Everyone should get access to treatment within 21 days of diagnosis and everyone should get the best support and care from expert professionals, regardless of where they live, or their chance of survival

We’re asking the Government to:

• Invest in faster, fairer and funded treatment and care pathways for people with pancreatic cancer, based on the recommendations of Pancreatic Cancer UK’s Optimal Care Pathway initiative.
• Review the treatment and care workforce for pancreatic cancer.
• Make sure that everyone with pancreatic cancer gets the advice, care and support they need from dedicated expert professionals from the point of diagnosis.

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• Did you or your loved one receive the support you needed from health care professionals?
• If you lost someone to pancreatic cancer, what were your experiences of palliative or end-of-life care?

How can the government and the NHS maximise the impact of data, research and innovation regarding cancer and cancer services? (Select the 3 actions that would have the most impact)

Our suggested actions:

1. Improve patient access to clinical trials
2. Increase research into early diagnosis
3. Increase research on rarer and less common cancers

Things you might want to consider putting in your response:

• Pancreatic cancer receives just 3% of the UK cancer research budget.
• GPs currently have no simple test that can allow them to detect pancreatic cancer early.
• We know from other cancers that with the right ambition and funding we can do better. The UK Government needs to invest in pancreatic cancer research to speed up the breakthroughs we need.

We’re asking the Government to:

• Invest in the roll-out and implementation of new blood, urine or breath biomarker tests within suspected cancer pathways, such as the Imperial VAPOR breath test
• Increase UK research investment to at least £35 million every year for the next 20 years
• Carry out a review of the barriers to developing new treatments, clinical trials and genomic testing for pancreatic cancer.
• Support research into rarer, less common and less survivable cancers. Rare and less common cancers represent 47% of all UK cancer diagnoses and 55% of cancer-related deaths. Despite this, patients with these cancers have limited access to clinical trials and treatments, significantly reducing their chance at survival.

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• Have you or your loved one had opportunities to participate in clinical trials or research studies? If not, what barriers did you encounter?
• What needs to happen to improve early diagnosis of pancreatic cancer?

In which of these areas could the government have the most impact in reducing inequalities in incidence (cases of cancer diagnosed in a specific population) and outcomes of cancer across England?  Select the 3 actions that would have the most impact)

Our suggested actions:

1. Improving prevention and reducing the risk of cancer
2. Raising awareness of the signs and symptoms of cancer, reducing barriers and supporting timely response to symptoms
3. Reducing inequalities in cancer screening uptake

Things you might want to consider putting in your response:

• There has been impressive progress in survival rates for many cancer types over the last few decades while survival for pancreatic cancer has not changed in 50 years.
• The UK ranks 29th out of 33 countries with comparable data for pancreatic cancer survival.
• There are currently no national screening programmes for pancreatic cancer.

We’re asking the Government to:

• Improve prevention of pancreatic cancer by increasing investment in initiatives and campaigns that raise awareness of all known pancreatic cancer risk factors
• Invest in the development of surveillance for people with risk factors for pancreatic cancer
• Invest in the roll-out and implementation of new blood, urine or breath biomarker tests for pancreatic cancer
• Increase UK research investment for pancreatic cancer to at least £35 million every year for the next 20 years

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• Following years without progress, do you think pancreatic cancer should now be a priority in the government’s plans?

What are the most important priorities that the national cancer plan should address? (Select the 3 most important priorities)

Our suggested priorities

1. Earlier diagnosis of cancer
2. Improving the access to and quality of cancer treatment, including meeting the cancer waiting time standards
3. Improving patient experience across cancer referral, diagnosis, treatment and beyond

Things you might want to consider putting in your response:

• Government after government has failed to treat pancreatic cancer with the urgency it demands. This cancer plan presents an important opportunity to finally address this overlooked cancer.
• Pancreatic cancer is diagnosed too late, and more than half of people die within three months of diagnosis. There are no tests to help GPs detect pancreatic cancer at an early stage. People are left waiting too long for treatment, and current treatments are limited and highly toxic.
• We need earlier diagnosis, better treatment and more research breakthroughs to change the shocking statistics facing people diagnosed with pancreatic cancer today.

To strengthen your response, we’d suggest that you share your own views and experiences relating to pancreatic cancer:

• Thinking about your experiences, what are your own priorities for improving pancreatic cancer diagnosis, treatment and care?
• What would have improved your experience?