A UK-wide survey that asks people with pancreatic cancer questions about their experiences of care has launched today. Commissioned by Pancreatic Cancer UK (PCUK), the charity is collaborating with Oxford Brookes University and Picker to deliver the first UK-wide survey into the topic.
The survey aims to understand the impact the disease has had on people, both physically and psychologically. They will also be asked about their experiences of care and what they need from their care, to identify how this support could be improved in the future.
PCUK says the survey is vital because not enough is known about the specific care needs of people diagnosed, and as a result it has heard from people affected that their support needs are often not met by the services and information they receive. The survey will be the first UK-wide opportunity for patients to share the impact the disease has on their quality of life, and whether the care and information they receive helps them to manage this.
The survey also aims to highlight specific areas where there are gaps in care or information, and areas which need improving. PCUK hopes that support and information will then be developed and improved to better meet the needs of people with the disease.
Patients currently being treated are encouraged to ask their doctor or nurse for a copy of the survey, or they can take part in the survey online. They can also call 01865 208108 to take part in the survey on the telephone.
Anna Jewell, Director of Operations at Pancreatic Cancer UK, said:
“Sadly, we have heard many times from people diagnosed that they haven’t had the support they need to help them cope with the impact of the disease on their daily lives. But without hearing from patients across the UK, the full picture is hidden from us. That’s why this survey is so important – it will show us in detail for the first time what support and information people with pancreatic cancer need to help them manage the impact of the disease, and whether their needs are being met. Only then will we be able to see where and how changes in the supportive care provided must be made. We hope this will lead to improvements in these areas in the future. We also aim to better tailor our own services for people with pancreatic cancer following on from the survey.
Pancreatic Cancer UK has commissioned Oxford Brookes University and Picker to conduct the UK-wide survey. The questions cover all aspects of care and ask about people’s physical and emotional support needs and how well they are being addressed. Patients will be asked about how they received their diagnosis, the treatments they have received, management of symptoms and side effects, as well as their thoughts on the written information they have been given and the attitudes of the medical professionals who have treated them.