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Together for change – a summary of your Change Ideas

At the Annual Summit 2018 we invited Change Ideas from health professionals, researchers, policy makers, supporters and people affected by pancreatic cancer. We had an excellent response. The ideas and contributions we received showed consensus that there are unacceptable variations in quality and consistency of care, that we need to do more to drive improvements in early diagnosis through research and education to primary care professionals, and that we need to increase opportunities to bring people with pancreatic cancer together.

Your Change Ideas gave us a lot of fantastic ideas for future work at Pancreatic Cancer UK and will inform our plans going forward. But they also provided reassurance that many of our current initiatives are tackling the key issues that matter to the pancreatic cancer community. Your support for these initiatives could further increase our impact. Below is an overview of some or our current activities that link to your change ideas and how you can get involved.

You said action was needed to reduce variations in treatment and care and implementation of the NICE Guidelines must be a priority

Implementation of the NICE guidelines will significantly help to improve care and reduce variation. It was clear that delegates felt we must all make implementation of the NICE guidelines a priority and each do what we can to make this happen. In particular there was strong support for the recommendations around managing key symptoms of the disease – nutritional symptoms, pain and psychological symptoms which should help improve quality of life and reduce the impact of the disease on daily lives.

A key focus for us at Pancreatic Cancer UK will be to ensure these guidelines are implemented through monitoring their implementation and campaigning if problems with implementation are identified.

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.

Please help us raise awareness by sharing the patient charter widely

At the summit we launched our new Promoting Innovative Practice initiative. The project and the specific showcases aim to inspire a culture of innovation and replication of best practice innovations to improve outcomes for patients. We would like to hear about new developments in care you have implemented or are planning so we can help to promote them. We can also provide small grants to enable you to bring health professionals in your area together to discuss how new innovations can be implemented.

Please get in touch if you believe that your practice is innovative and you would like to share it with others

You said it is 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 on Pancreatic Cancer. The APPG launched a new report last year, publishing the findings of their inquiry into early diagnosis. The Need for Speed 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.

Sign up to receive news and updates from the APPG, or find out how to encourage your MP to attend a meeting

You said pancreatic cancer care requires a focus on early diagnosis

Motivated by supporters and researchers committed to driving change in current diagnostics, we brought the pancreatic cancer research community together in November 2017 and asked them to collaborate to design and develop a brand new early diagnosis research project. Leading pancreatic cancer researchers spent an intensive day debating and discussing earlier diagnosis of pancreatic cancer and pancreatic neuroendocrine tumours. Topics such as biomarkers, supporting GPs, improving existing pathways and working with the NHS were all considered as areas of research to focus on.

The exciting result of bringing the community together will be an early diagnosis research project funded by Pancreatic Cancer UK, involving multiple stellar researchers, which is currently being reviewed by our Scientific Advisory Board to ensure the high quality of the research and the potential for impact for patients.

You said we need more research to find ways to better treat the disease

One of our contributions to tackling the issue of underfunding in pancreatic cancer research is our Research Innovation Fund. The fund aims to spur creative and cutting edge ideas and approaches in pancreatic cancer research, including those successful in other areas of cancer research that have justifiable promise for pancreatic cancer. Funding like this, which allows a researcher to investigate a new direction for research, may make the difference in finding new pieces of the puzzle, leading to a better understanding of pancreatic cancer.

If you are a researcher with cutting edge pilot work that fits the bill, you can apply to the fund in July 2018

You said we need to 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. Last summer, 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.

Please support us by sharing our Primary Care Top Ten Tips to your networks

You said we need to bring people with pancreatic cancer together for mutual support

Increasing the opportunities for people affected by pancreatic cancer to meet others is a priority for us. We run Living with Pancreatic Cancer Support Days across the UK providing an opportunity for those living with pancreatic cancer to share ideas and experiences, and receive face to face support to manage symptoms and live well.

We have also just launched a new service, Side by Side, for people with pancreatic cancer who have had, or are likely to have, surgery to remove their cancer. It gives people the chance to speak to a trained volunteer who has been in a similar situation.

Our national Support Line provides support all across the UK.

Please help us promote these services in your area so we can reach more people affected by pancreatic cancer and reduce isolation. If you are a Clinical Nurse Specialist or dietitian, talk to us about running a Living with Pancreatic Cancer Support Day in partnership in your area