If you’d like to be sent the full insight deck then please contact Aimee.Perry@pancreaticcancer.org.uk
Insights from people newly diagnosed
We’ve been speaking to those affected by pancreatic cancer and listening to healthcare professionals’ insights to find out what matters most in the time following a diagnosis.
We welcome the commitment in the National Cancer Plan to establish direct referrals over the coming years, ensuring that people newly diagnosed with cancer are routinely connected to trusted charities.
This is a critical step in enabling patients and their families to access timely, tailored support and reliable information at a point when it is most needed. Support from charities can play a vital role in improving quality of life, helping patients and their loved ones manage the emotional impact, navigate complex information and feel less alone during an incredibly challenging time.
At Pancreatic Cancer UK, we recognise that delivering this effectively requires a clear understanding of needs at the point of diagnosis. Over recent months, we’ve listened to the experiences of people affected by pancreatic cancer, alongside the insights of health professionals, to help us build a clearer picture of what matters most at this early stage.
The three key themes that stood out were:
1. The moment of diagnosis is often defined by shock and overwhelm, limiting people’s ability to absorb information beyond the diagnosis itself. As one person told us:
‘You hear it all at once, then leave the appointment and forget it all.’ – Person affected by pancreatic cancer
This creates an immediate need for clear, honest explanations and repeated opportunities to revisit information with support.
2. The days and weeks that follow are frequently characterised by a distressing “limbo period” of waiting. As the initial shock begins to subside, people want clarity about what will happen next, timescales, and a clear sense of the pathway ahead.
‘We needed someone to talk it all through with, to be able to ask questions, understanding how long test results should take. We had very little info and no one giving us answers. I didn’t know you couldn’t start treatment until after biopsy – this took weeks in a limbo period. I was fighting for information.’ – Person affected by pancreatic cancer
Those who have personalised follow-up feel better supported and able to navigate the uncertainty, and this often shapes how they view their overall experience.
3. The profound impact on family and friends was mentioned consistently. Loved ones face significant overwhelm, whilst also being thrust into caring, coordinating, and advocacy roles, typically with little guidance. Many described feeling pressure to “catch up”, working out what support exists, what to prioritise, and how best to help.
‘They go from this fit and healthy person to having a huge amount of symptoms – the stress this puts on those supporting them is way too much. Someone recently said to me “this is the first time I’ve slept in 4 weeks”, when her husband was admitted as they’d been trying to care for him at home.’ – Health professional
We are now using these insights to further strengthen our services and shape referral pathways that ensure people feel supported, informed, and connected from the moment they are diagnosed.
Do you support people with pancreatic cancer? If so, please do tell them about the support we can provide. Our information is reviewed by clinical experts and covers everything about pancreatic cancer, so you can share it with confidence. Our specialist nurses are just a call or email away. They have time to answer questions your patients may feel are less urgent, building on the support you already provide. And we can help people affected by pancreatic cancer to connect and share their experience with others going through a similar situation. You can find out more about our services here.
