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Progress on pancreatic cancer still lags behind other cancers

Posted by: Policy and campaigning 21 March 2013

Progress on tackling pancreatic cancer continues to lag woefully behind other cancers despite the disease being the 5th most common cause of cancer death in the UK.

A detailed analysis by Pancreatic Cancer UK of the Department of Health 2011/12 National Cancer Patient Experience Survey (NCPES)[1], published last year, shows that pancreatic cancer patients in England, on most fronts, still have a considerably poorer NHS experience than almost every other cancer patient group.

Pancreatic cancer patients report longer waits to get referred to hospital by GPs than any other cancer group and are almost twice as likely than any other cancer patient group to experience worsening health whilst waiting to be seen at hospital. Once in hospital, pancreatic cancer patients are less likely than any other cancer patient to feel that staff did everything they could  to control pain.

Drawing on the 2010 NCPES, Pancreatic Cancer UK undertook a comprehensive review of the pancreatic cancer landscape (Study for Survival report, 2011) and found serious shortcomings on almost every front, from poor survival through to poor NHS patient experience. Two years on and very little has changed. Pancreatic cancer still has the lowest survival rate of all of the 21 most common cancers at just under four percent. A figure that has hardly changed in 40 years.  

This is backed up by mortality data recently published[2] that confirms that pancreatic cancer mortality rates are one of the few that are not improving in Europe. This data also confirmed that  pancreatic cancer is the fourth leading cause of cancer death in Europe for both men and women having recently overtaken stomach cancer rates in both sexes and uterine cancer rates in women.

On a more encouraging note the 2011/12 NCPES survey found that 87 percent of pancreatic cancer patients were given the name of the Clinical Nurse Specialist (CNS) in charge of their care. In addition, over 80 percent of pancreatic cancer patients rated their care as excellent or very good, although this represents the second lowest rating of all cancer groups and 87 per cent of all cancer patients combined rated their experience as excellent or very good.

However, we know from our own investigations, published in our Study for Survival, that only about 40 percent of pancreatic cancer patients are referred to a specialist centre for treatment and that those patients cared for at local level do not regularly have access to a CNS.  Therefore, it is likely that many of the respondents to the 2011/12 NCPES were  treated at specialist pancreatic cancer centres versus their local NHS hospital.

The All-Party Parliamentary Group on pancreatic cancer, a powerful parliamentary lobby established to help shape government policy on tackling this disease, will meet on Thursday 21st  March 2013 to discuss the analysis of the 2011/12 NCPES results. The Group will take evidence from Pancreatic Cancer UK as well as hear directly from pancreatic cancer patients.

Pancreatic Cancer UK is working hard to bring about change for pancreatic cancer patients with its Campaign for Hope, which has two ambitious goals: To double five-year survival rates within five years and to move the NHS experience of pancreatic cancer patients from being one of the worst to one of the best. The Charity has also launched its Three-Year Strategy for Hope 2013-2016 this week, which sets out what needs to be done to help achieve these goals over the next three years.

Alex Ford, Chief Executive of Pancreatic Cancer UK, comments, "It is disappointing to see yet again that patient experience is not improving for pancreatic cancer patients on so many fronts. For instance, having to see a GP more often than other cancer patients before being referred to hospital, not getting access to the information they need and not receiving proper pain management when undergoing treatment.

"Our Strategy for Hope addresses the urgent measures required to tackle this lethal disease, including improving patient experience and a government commitment to making pancreatic cancer a priority across the UK."

References:

[1] Department of Health 2011/12 National Cancer Patient Experience Surveyhttp://bit.ly/YBVnrQ

[2] Annals of Oncology, European cancer mortality predictions for the year 2013http://bit.ly/146CGEP

Below is an overview of an analysis of the pancreatic cancer patient responses (660) from the NCPES 2011/12. The results show that pancreatic cancer patients:

  • still visit their GP more often than other cancer patients before being referred to hospital with over 40% reporting 3 or more visits to their GP before being seen at hospital.The average of all cancer patients combined shows that nearly 75% of patients are referred to hospital after only 1 or 2 visits to their GP
  • are more than twice as likely than other cancer patients to experience worsening health whilst waiting to be seen at hospital. 50% of pancreatic cancer patients reported that their health worsened while waiting compared to only 20% of all cancer patient groups combined
  • are more likely than any other cancer patient to feel that they have been given conflicting information. One third of pancreatic cancer patients said that they were given conflicting information compared to 28% of all cancer patients combined 
  • are less likely than any other cancer patient to feel that their views were taken into account by doctors and nurses when discussing treatment.36% of pancreatic cancer patients felt that their views were not taken into account compared to 30% of all cancer patient combined 
  • are less likely than any other cancer patient to feel that hospital staff are doing everything they can to control pain at all times.Nearly a quarter of pancreatic cancer said they didn't feel that everything was being done to control pain at all times compared to 15% of all cancer patients combined
  • are less likely than any other cancer patient to feel that their family was given the information needed to provide care at home. Nearly  half of pancreatic cancer patients said their family was not given the information they needed to provide care at home compared to around 40% of all cancer patients combined that said that families were not given the information they needed 

In addition pancreatic cancer patients:

  • are less likely than most other cancer patients to be given written information about their type of cancer.With 45% of pancreatic cancer patients saying they were not given information compared to less than 30% of all cancer patients combined
  • find it more difficult than almost every other cancer patient to contact their CNS. Around 30% said  they didn't find it easy compared to 25% of all cancer patients combined 
  • didn't get answers to important questions all/most of the time.13% of pancreatic cancer patients said that they didn't get answers compared to 9% of all cancer patients combined
  • didn't have their operation explained to them in an understandable way. 30% of pancreatic cancer said they didn't have their operation explained to them in an understandable way compared to 25% of all cancer patients combined

On a more encouraging note:

  • the survey found that 87% of pancreatic cancer patients were given the name of the CNS in charge of their care
  • over 80% of pancreatic cancer patients rated their care as excellent or very good - although this represents the second lowest rating of all cancer groups
  • 87% of all cancer patients combined rated their experience as excellent or very good.