Those behind the survey are now calling on the NHS and the government to introduce a holistic needs assessment to ensure that patients have access to personalised care, immediately after diagnosis.
“Time and time again we hear that there are significant gaps in supportive care”
In the first ever UK survey into the experiences of people with pancreatic cancer, it was found that half of all respondents had one or more unmet support need that were considered either high or moderate in severity.
The survey, conducted by Oxford Brookes University and The Picker Institute, on behalf of the Pancreatic Cancer UK charity, showed 87% of respondents reported one or more support needs, ranging from depression, fatigue, financial pressures and changes to appetite.
However, those who responded to the survey highlighted that psychological care needs were the most likely aspect of care to be left unattended to.
Almost a third of patients reported in the survey that they had fears about the future or fears about the cancer spreading, that were not being addressed in their care.
Pancreatic Cancer UK warned that this was “extremely concerning” especially considering pancreatic cancer had the second highest risk of suicide after diagnosis compared to other cancers.
At present, there were no established psychological interventions for people with pancreatic cancer, noted the charity. It also flagged that NICE guidelines on the disease cited this as a key area for improvement.
Therefore, following the survey, Pancreatic Cancer UK is now calling for investment in research for the development of psychological interventions for people living with and beyond pancreatic cancer.
It also wants to see the NHS and government introduce a holistic needs assessment to help improve access to personalised care.
Dianne Dobson, specialist nurse at Pancreatic Cancer UK, said: “Time and time again we hear from patients and families that there are significant gaps in supportive care.
“Pancreatic cancer is such an overwhelming diagnosis to come to terms with, so frequently diagnosed at advanced stages with minimal treatment options for many patients, but still the needs of patients go unmet,” Ms Dobson added.
“We understand the importance of the patient voice and addressing these areas of unmet needs, so they are not left to struggle with their symptoms and psychological health alone, at the most difficult time of their lives,” she said.
“The needs of pancreatic cancer patients have been neglected for far too long”
According to the charity, the extent of needs and variation in care experienced by people diagnosed with pancreatic cancer has previously gone unreported because they are not all captured by the National Cancer Patient Experience Survey.
It noted that the national survey is typically distributed within six to nine months of diagnosis, when many people with pancreatic cancer have already died or are too unwell to respond.
Anna Jewell, director of services at the charity, said: “For so many pancreatic cancer patients to tell us they have unmet support needs is heart-breaking – these are live needs which if left unaddressed, can have a huge detrimental impact on their quality of life.
“We want to see support needs assessed for all pancreatic cancer patients immediately after diagnosis so that they can be helped to maintain as good a quality of life as possible,” she said.
Ms Jewell highlighted that no one affected by this disease should be “left to struggle in isolation”, adding that specialist support was available via the charity’s support line.
“Our dedicated team of nurses are there to help patients and their families, but we need fellow health professionals to signpost them to us,” she said.
“The needs of pancreatic cancer patients have been neglected for far too long,” said Ms Jewell. “It’s imperative that these findings now prompt further research into the most effective interventions, particularly around mental health, so that people with pancreatic cancer receive the very best care and support.”