Join our campaigns community
Sign up to get regular updates on ways you can campaign for change for people with pancreatic cancer.
Responding to the Government's Call for Evidence for their 10 Year Cancer Plan
The Government has launched a ‘War on Cancer’ and is currently writing a new plan for how to improve cancer treatment and care. Through their Call for Evidence they are asking members of the public, health professionals, charities and others to share their ideas on what should be included.
We’ve submitted a response as Pancreatic Cancer UK.
How can you help?
This is a once in a decade opportunity to inform the Government’s new 10 Year Cancer Plan, and make sure pancreatic cancer is at its core.
You can help by completing their public survey and asking them to prioritise pancreatic cancer. The deadline has been extended to 11.45pm on Fri 8th April 2022.
If enough of us raise our voices, we’ll be impossible to ignore.
Please keep us in the loop!
It’s important for us to keep track of the number of people who’ve responded. Please let us know if you’ve submitted a response via campaigns@pancreaticcancer.org.uk.
If you can, please also share your response with us. Instructions for how to do this are here.
The survey questions
Below are the six key questions asked in the Call for Evidence. We’ve put some prompts, and suggestions of things you might want to include in your response, under each question.
Do you have any suggestions for how to raise awareness of the causes of cancer and how it can be prevented?
- In your experience, is there anything that might have helped you better understand the causes of cancer?
- A screening programme for people who have pancreatic cancer in their family could help make sure more cancers are picked up early.
- Pancreatic cancer doesn’t have clear causation in many respects – but there is a clear connection with, for example, new-onset diabetes in older people. How do you think greater awareness of this could be raised?
Do you have any suggestions for how to raise awareness of the signs and symptoms of cancer?
- Did you know the symptoms of pancreatic cancer before it impacted you or your family?
- What would have helped you to be more alert? Where would you have liked this information to come from?
- This is something that a national awareness campaign would help with – especially since the symptoms for pancreatic cancer are so vague.
Do you have any suggestions for how to get more people diagnosed quicker?
- What would have helped you or your loved one get an earlier diagnosis?
- Was there anything that didn’t go well in the diagnosis journey – and if so, what would have made this experience better and quicker?
- We need a simple test that GPs can do – so mentioning this would be helpful.
- We need consistency in how people presenting with vague symptoms are dealt with by their GP – a standard ‘pathway’.
Do you have any suggestions for how to improve access to and experiences of cancer treatment?
- What could have been better about your or your loved one’s experiences of treatment, if they got it?
- Was the treatment easily accessible, was its purpose explained, and was it timely?
- Did you / your loved one get access to Pancreatic Enzyme Replacement Therapy (PERT) – aka Creon? If so, how easy was it to get, and how did it help? If not, what impact did this have?
- Pancreatic Cancer UK are developing an Optimal Care Pathway which will map out what an individual should expect in terms of their care and treatment based on the best available evidence and clinical knowledge. So if you have space, please mention this in your response as a suggested solution that the NHS should adopt.
- We know that around 50% of people diagnosed with pancreatic cancer aren’t being prescribed PERT – the need to improve this percentage, so that everyone who needs it can get PERT, would be a good thing to mention. You can read more on the importance of PERT, and our campaign to improve prescription rates, here.
Do you have any suggestions for how to improve after-care and support services for cancer patients and their families?
- After and during treatment, how were you / your loved one supported by healthcare professionals?
- Was help and information given to help with things like nutritional and digestive symptoms?
- Was any psychological support given, e.g. access to mental health services to cope with the emotional challenges of the diagnosis and treatment? If not, what would have helped?
- Currently, too few people get psychological and nutritional support after their diagnosis. It would be helpful to mention how important it is that these things are offered to everyone diagnosed.
Do you have any suggestions for how can we maximise the impact of research and data regarding cancer and cancer services in England, including how we can translate research and data into practice sooner?
- Did you or your loved one take part in a clinical trial? If yes, what was that experience like, and what could have been better? If not, is this something you or your loved one would have liked to have the option of?
- Pancreatic cancer is a very under-researched disease. We need more, better and more innovative research to crack this cancer.
- One of the big problems around data is that we don’t have enough! This means we don’t fully understand the patient experience. If you have space, you could make the point that more data collection will help us understand people’s experiences and know what to change about the systems.
How to write your response
- Try to refer to pancreatic cancer throughout your response.
- Share your thoughts in as plain language as possible, focusing on solutions, rather than problems. What would have improved you or your loved one’s experience? What do you think needs to change?
- The Government is not expecting you to use any professional or scientific language – so don’t worry about trying to sound like an academic!
- Bring in personal examples wherever you feel comfortable doing so – how have you or your loved ones been affected? This will really help to communicate the urgency and seriousness of pancreatic cancer, and why it needs special attention.
- Start by reading through all the questions, choose which ones you want to respond to – don’t feel any pressure to write something for each question.
- Write out a few bullet points of what you want to include in each answer. You could go back to flesh out your answers a little more once you’ve decided what you want to put for each question. It might help to do this in a separate word document, and then copy and paste each answer into the online survey once you’re ready.
Influencing across the UK
This Call for Evidence will influence the next 10-year cancer strategy in England. In the meantime, we are doing lots of work behind the scenes to influence cancer policy across the UK. The Scottish Government is due to launch a consultation on its new cancer strategy in coming months, and we fed into the recently published 10 year cancer plan in Northern Ireland. Make sure that you sign up to our Campaigns Community for updates on how you can get involved.
Join our community now
