A Patient Charter, aimed at ensuring consistent support and care for anyone diagnosed with the disease, has been created by Pancreatic Cancer UK.
Despite the fact that more than 9,400 new cases of pancreatic cancer are now diagnosed throughout the UK every year, patients and families routinely report wide variations in care.
Kicking off a major two-year drive, the Charter is the first step in the charity’s ‘Gold Standards’ Campaign. Setting out the expectations all pancreatic cancer patients should have, the booklet aims to ensure patients are equipped to gain the support they need at a difficult and confusing time.
Many patients and families say they feel let down and didn’t get the information and help they needed at the outset, particularly when their diagnosis has been typically late, as symptoms have been difficult to spot. Unusually, 45 % of pancreatic cancer patients are diagnosed via A and E, more than twice the number for other forms of cancer and a clear support pathway is often missing. Many report having had little time to take in what is happening and not knowing what to expect following their discharge from hospital. A shocking 53% say they or their family member were not offered any support when told of their diagnosis.
Pancreatic cancer survivor Lynne Walker said:
“I owe my life to my hospital and those who treated me. The shock, fear and lack of information after my diagnosis was however, overwhelming. If someone had put this guide in my hand when I was feeling so vulnerable it would have felt like gold dust. This guide may look modest but it gives patients and loved ones a confidence that is essential at an incredibly stressful and awful time.
“Patients have every right to be able to ask questions and every right to expect reasonable care. I want to see every patient and family given a copy.”
The Charter sets out key principles that every patient should be able to expect:
- That their case is assessed by relevant health professionals
- Diagnosis and treatment options are clearly explained
- Treatment is tailored to their personal situation
- They are treated with compassion, dignity and respect
- Their family is offered information and support
- They have access to high quality, coordinated palliative care if needed.
Sophie Noble, a Hepatobiliary Nurse Specialist at Leicester General Hospital commented:
“From a nurse’s point of view, this Charter is most welcome. It lays out clearly for everyone involved in patient care, what the patient and their family should be able to expect from their healthcare provider, wherever they are in the UK.”
The small booklet can be downloaded by healthcare professionals or ordered here. The charity’s aim is that every patient will eventually be given a copy automatically on diagnosis.
Alex Ford, Chief Executive of Pancreatic Cancer UK said:
“Our Patient Charter is the first step of our Gold Standards campaign, aimed at driving better care for all. We believe that with great commitment on so many fronts, we can see change and a better future for all pancreatic cancer patients.”