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How pancreatic cancer care needs to change

Posted by: Policy and campaigning 5 June 2018

Earlier this year we asked you to tell us how care and treatment for people affected by pancreatic cancer needs to change. The ideas you submitted via our Change Ideas Wall showed that there are unacceptable variations in quality and consistency of care across the UK, and that more needs to be done to drive improvements in early diagnosis.

These are some examples of what you told us:

“I would like to see improvement in early diagnosis, as this is key to patients having access to early treatment options and improving their outcomes.”

“We need a greater understanding of the pain pancreatic cancer brings to those suffering within its grasp.”

“We need to find more effective ways of treating pancreatic cancer - we need to see far more investment into research to help us find better ways of treating the disease.”

 “After diagnosis I feel a Specialist Nurse would be a good idea. More funding is also needed and higher awareness.”

“I would like to hear more people having consistent care after their pancreatic cancer diagnosis. Whether it is tests or surgery the patient deserves to be made aware of what is going on throughout their treatment.”

Your ideas, alongside the pledges made by health professionals in the pancreatic cancer field, will inform Pancreatic Cancer UK’s work – including our policy and campaigning, service provision and the research we fund - so thank you for taking the time to get in touch, it’s valuable feedback. Take a look below to find out what we are already doing and plan to do in the future:

Focus on early diagnosis

It’s vital that pancreatic cancer is diagnosed earlier so we can change the future for patients. We provide the secretariat to the All Party Parliamentary Group (APPG) on Pancreatic Cancer, a cross party group made up of parliamentarians and other interested and expert members. The APPG launched a new report last year - The Need for Speed, which highlights why early diagnosis is vital to saving lives and how it can help to give people the best possible chance of living better for longer. The report will now be used to urge policy makers in Westminster to implement its recommendations and help improve outcomes for pancreatic cancer patients across the UK.

In November 2017, we also brought together the pancreatic cancer research community to develop a new early diagnosis research project.  The result of this will be a research project funded by Pancreatic Cancer UK involving multiple stellar researchers. This early diagnosis project is currently being reviewed by our Scientific Advisory Board, and is expected to begin later this year.

Target primary care professionals to raise their awareness of pancreatic cancer

It is critical that we improve the diagnosis of pancreatic cancer and reduce the number of times people have to visit their GP before being referred for specialist investigation. In summer 2017 we launched our Primary Care Top Ten Tips for early diagnosis of pancreatic cancer, working in partnership with Macmillan Cancer Support. This resource is reaching GPs across the UK through the Macmillan GP community. We hope that these simple tips will help to increase GPs’ confidence in early diagnosis of pancreatic cancer and improve the experience of patients who are worried about this disease. We have also delivered presentations and short training sessions to GPs through our training programme.

Reduce variations in treatment and care

Implementation of the National Institute for Health and Care Excellence (NICE) guidelines (released in February 2018) on pancreatic cancer will significantly help to improve care and reduce variation. A key focus for us at Pancreatic Cancer UK will be to influence and ensure these guidelines are implemented.

It is also critical that those diagnosed and their families are aware of the best practice care they should be receiving as recommended in the guidelines. We will do this through producing a lay summary of the NICE recommendations and signposting to the guidelines through our information and Patient Charter

Patient Support

We run a free and confidential Support Line for anyone affected by pancreatic cancer in the UK. Our pancreatic cancer specialist nurses understand the issues you might be facing and can support you in coping with pancreatic cancer by providing specialist information about treatment options and managing symptoms and side effects.

There are many ways that you can help us take on pancreatic cancer. Visit our Get involved page for more information.