This week Sarah Bell, Head of Services at Pancreatic Cancer UK spoke about patient involvement at the European Pancreas Club in Liverpool. Here’s a recap of her talk.
Pancreatic cancer needs a strong community of patients, carers, health professionals, researchers and influencers to take it on together. At Pancreatic Cancer UK we empower patients and their families to get the best treatment and care to live as well as they can.
Information and Support
“Understand that people need understanding, support and compassion. A medic may diagnose cancer every day but a patient is diagnosed once.”
Pancreatic cancer patients have a number of unmet needs and some research studies have demonstrated this. Anxiety, depression, coping with symptoms, including fatigue and digestive problems are more prevalent in pancreatic cancer. Also, we know that only 62% of pancreatic cancer patients in England reported being given written information about the type of cancer they had, compared to 72% of all cancer patients (Cancer Patient Experience Survey).
In order to address the unmet needs and gaps in information, we aim to ensure that everyone living with pancreatic cancer knows of our services within one month of diagnosis. And we will continue to provide support and information across the treatment spectrum. Including through our Living with Pancreatic Cancer Information Days, aiding Support Groups such as the Pancreatic Cancer Survivors Group UK and involving patients and carers in everything that we do, from obtaining feedback to asking them to review information.
Despite only 5% of people surviving pancreatic cancer for five years after diagnosis, 1.6% of cancer research funding in the UK is currently directed towards pancreatic cancer. Pancreatic cancer is tough to diagnose and tough to treat and we need to develop new strategies for both. We need to see further investment to build the critical mass of researchers undertaking work in the area and support them in their careers. That’s why we offer a number of funding opportunities.
We’ve also launched our Research Involvement Network, whereby people affected by pancreatic cancer are working in partnership with the research community to help shape their work, e.g. by sharing their experiences of diagnosis, treatment and care. This helps to ensure that research being conducted is relevant to the needs of patients.
“There is no easy way [to be given a diagnosis] but I was told by a junior doctor in a six bed ward – not good.”
We know that the standard of care often falls below that received by those with other cancer types. This can include late diagnosis which can have a direct correlation with length of survival, e.g. 12 month survival is 16% higher in those diagnosed through GP referral vs A&E and 3 year survival is 7% higher. Research data also consistently shows that patients have to go to their GP a large number of times before getting referred to hospital – delaying diagnosis and their health gets worse waiting for appointment.
We also know that too few patients see a dietitian and not all are offered pancreatic enzyme replacement therapy – the impact of this can be significant for someone's ability to be fit enough for treatment.
It is for all of these reasons that we launched our Patient Charter earlier this year.
The standards within the Charter are drawn from sources including the NHS Constitution and NHS service specifications for pancreatic cancer and cover everything from diagnosis to end of life care. Our Patient and Carer board were involved in the development of the charter, which is the first in a series of steps being taken by Pancreatic Cancer UK to raise care standards.
At Pancreatic Cancer UK the most important thing for us is to ensure that the voice of those affected by pancreatic cancer is not only heard, but can also make a difference, and that’s why patient and carer involvement is so vital in everything that we do.