Have your say on the 10 Year Health Plan

• When you or a loved one were affected by pancreatic cancer, what, if any, were the positive parts of your diagnosis, treatment and care? For example, did you receive good support from a specialist nurse or dietician?
• Based on this experience, what are the positive things about the current NHS you’d like to see given more focus over the next 10 years?

Things you might want to consider in your response:

Early diagnosis of pancreatic cancer

• Pancreatic cancer is often diagnosed too late.
• More than half of people die within three months of diagnosis.
• The Government must guarantee that people with symptoms and risk factors for pancreatic cancer are referred – and fast.
• If you or a loved one was affected by pancreatic cancer, what were the challenges you faced in diagnosis?

Better treatment and care for pancreatic cancer

• 7 in 10 people with pancreatic cancer never receive treatment – not even chemotherapy.
• 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.
• What were the challenges you or a loved one faced in treatment and care?
• What needs to change over the next 10 years?

Research into pancreatic cancer

• Right now, there are no tests to help GPs diagnose pancreatic cancer at an early stage. And treatments are limited and highly toxic.
• 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.
• By 2035, we need to ensure that people are diagnosed early using simple tests, and are given treatments that have been created specifically for pancreatic cancer.
• 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 10 years’ time?

• This section refers to a recent report which identified challenges facing the NHS.
• Select all the challenges you experienced from the list, such as poor communication, waiting times, delays to treatment and poor quality of care.
• In the second part, select the three areas that you think are the most important.

This means delivering more tests, scans, treatments and therapies nearer to where people live. This question is in two parts.

In what ways, if any, do you think that delivering more care in the community could improve health and care?

Suggested content to include in your response:

• People with pancreatic cancer do not always get the support they need across hospital and community settings.
• Too many people with pancreatic cancer are discharged from hospital without a support plan to manage their symptoms.
• Earlier and faster treatment, including in the community, could improve outcomes and reduce the burden on hospitals.
• The Government must implement the recommendations by Pancreatic Cancer UK’s Optimal Care Pathway initiative and the National Pancreatic Cancer Audit (NPaCA).
• If you or a loved one were affected by pancreatic cancer, how was your experience of care? For example – were you/they able to get the support needed, and did you/they have to visit A&E at any point to get this?
• What might have improved your experience of support and care for pancreatic cancer?

What, if anything, concerns you about the idea of more care being delivered in the community in the future?

Things to consider:

• We need earlier diagnosis of pancreatic cancer.
• Before we move care into the community, we first need to deal with the problems in primary care.
• People are not being referred and diagnosed fast enough through their GP, and 50% of people are diagnosed in A&E.
• We need better referral tests to help get people diagnosed quickly.
• We need implementation of NHS England’s Best Practice Timed Pathway guidance.
• The NICE referral guidance for pancreatic cancer needs to be updated to support GPs to refer more people with pancreatic cancer for tests.
• Did you or a loved one struggle to get a referral for further tests from your GP?
• What changes are needed to make sure more people get referred?
• What do you think community care should look like in 10 years’ time?

This means improving how we use technology across health and care to improve services.

In what ways, if any, do you think that technology could be used to improve health and care?

Suggested content to include in your response:

• People with pancreatic cancer have no time to wait.  But slow processes and decision-making are making things worse.
• We need better joined-up patient health records and better tools and technology to help clinical decision making.
• Do you think that slow processes and decision-making affected you or your loved one’s experience and chance of survival?
• Did you or a loved one ever experience inconsistent care?
• How do you want to see technology used to improve care for pancreatic cancer in 10 years’ time?

What, if anything, concerns you about the idea of increased use of technology in the future?

Things to consider:

• We must make sure that people still have a specified healthcare professional who can consistently offer support throughout their diagnosis, treatment and care journey.
• Any advances in technology are welcome but must not be used as a substitute for providing warm and holistic care to people diagnosed with such distressing diseases as pancreatic cancer.
• When you or your loved one were diagnosed with pancreatic cancer, did you experience enough holistic support from healthcare professionals?
• Do you have any concerns around more technology being used in the future of the NHS?

This shift focuses on spotting illness earlier to take pressure off health and care services.

In what ways, if any, could an increased focus on prevention help people stay healthy and independent for longer?

Things to consider:

• Not all cancers are preventable. Early diagnosis of pancreatic cancer presents the biggest opportunity to help people stay healthy and independent for longer.
• 80% of people with pancreatic cancer are diagnosed too late to survive.
• We need more research into pancreatic cancer. We need better tools and tests to identify people presenting with vague symptoms.
• We need more targeted screening and surveillance programmes to identify people at higher risk of pancreatic cancer. 10% of pancreatic cancers are inherited and around half of people diagnosed with pancreatic cancer have new onset diabetes.
• Do you think you or your loved one’s experience would have been different if there were more tests for pancreatic cancer?
• Do you think the Government should invest more money in early diagnosis of pancreatic cancer?

What, if anything, concerns you about the idea of an increased focus on prevention in the future?

Things to consider:

• There has been progress in survival rates in many cancer types over the last few decades.
• But the survival rate for pancreatic cancer has stayed for decades – both in comparison to other cancers and internationally.
• Not all cancers are preventable. Thus a focus on early diagnosis, better treatment and more research investment for pancreatic cancer is the priority for bringing about the long-awaited change that is desperately needed.

• Refer to pancreatic cancer throughout your response.
• Where relevant to your answer, please try to include these phrases so pancreatic cancer stands out among the thousands of responses the Government will receive:
  • “Early diagnosis of pancreatic cancer”  
  • “Better treatment and care for pancreatic cancer”
  • “More research into pancreatic cancer”  
• Share your thoughts in plain language, focusing on the problems and solutions.
• The consultation asks about the next 10 years – so think about any big, long-term changes you want to see.
• Think about what would have improved you or your loved one’s experience, and what you think needs to change.
• Bring in personal examples wherever you feel comfortable doing so. This will help to communicate the urgency and seriousness of pancreatic cancer, and why it needs special attention.
• Start by reading through all the questions and choosing which ones you want to respond to – you don’t need to respond to them all.