Responding to the Welsh Government's call for evidence for the Welsh Cancer Strategy

• What could have been better about you or your loved one’s experiences of diagnosis, treatment or care?
• To deliver the Wales National Optimal Pathway, we need funding for the specialist cancer and supportive care workforce – including a commitment to increase the number of pancreatic cancer specialists.

• What would have helped you or your loved one get an earlier diagnosis?
• Was there anything that didn’t go well in the diagnosis journey – and if so, what would have made this experience better and quicker?
• We need to drive earlier diagnosis for pancreatic cancer, through things like monitoring more people with a family history of pancreatic cancer. Around 10% of people with pancreatic cancer have an inherited risk of developing it.
• It’s common for people with pancreatic cancer to go to the GP more than once before they are referred, and for them to be diagnosed at a late stage, often via A&E.
• There needs to be a system that refers people with all pancreatic cancer symptoms, including ones that are vague, for faster diagnosis.

• What treatments were you or your loved one eligible for, or were you told there were no treatment options available?
• You could share whether you think there should be more treatment options for pancreatic cancer, and how that opportunity could have shaped your/your loved one’s experience.
• We know that around 70% of people with pancreatic cancer in Wales don’t get access to treatment and there needs to be better access to clinical trials.

• After and during treatment, how were you / your loved one supported by healthcare professionals?
• Was help and information given to help with things like nutritional and digestive symptoms?
• Was any psychological support given, e.g. access to mental health services? If not, what would have helped?
• Currently, too few people get psychological and nutritional support after their diagnosis. It would be helpful to mention how important it is that these things are offered to everyone diagnosed.
• There needs to be funding for supportive care for anyone with cancer, and a clear pathway for the NHS to refer patients to charities who can offer information and support to complement NHS services.

• Were you or your loved one offered a clinical trial? You could share whether you were offered one and what changes would have improved your experience.
• Over the last few decades, pancreatic cancer has struggled to get research funding. As a result, there haven’t been enough breakthroughs or new treatments created.
• A recent Pancreatic Cancer UK survey found that only 12% of people with pancreatic cancer were given the chance to take part in a clinical trial. There are too few clinical trials for pancreatic cancer and new clinical trials are not opened quickly enough or fairly across Wales and the rest of the UK.
• The Welsh Government needs to ensure there are more clinical trials within Wales and patient have early and fast access onto these trials

• Did you or your loved one have access to high-quality cancer care?
• Were there any delays to your treatment? Were you told why?
• The Government needs to deliver the Wales National Optimal Pathway for Pancreatic Cancer, so that there are more specialists for pancreatic cancer.

• Current systems used to collect data for pancreatic cancers treatment and care aren’t very accurate. This is partially because pancreatic cancer is grouped with other cancers when data is collected, making it difficult for health professionals and healthcare teams to access specific pancreatic cancer data.
• More data collection will help us understand people’s experiences better, and know what to change about systems in Wales.
• Data collection needs to be reviewed for all cancers, especially for cancers where national audit teams have identified it as a significant issue, such as pancreatic cancer.

• Were there any treatment or care options that you were offered but had to travel to get? If so, what options were they and how far would you have had to travel?
• Did you feel like you received any difference in care or treatment because of who you are or where you live?
• We need consistency in how people presenting with vague symptoms are dealt with by their GP – a standard ‘pathway’.

• Right now, there are not enough ambitious targets to improve the experiences and outcomes of people diagnosed with pancreatic cancer.
• The Welsh Government should set ambitious targets to increase pancreatic cancer survival rates one year on from diagnosis. This will help drive up survival rates for cancer in Wales. It should match the survival ambition of the National Cancer Plan for England which commits to increase the number of people living at least 5 years after a cancer diagnosis to 75% by the end of 2035.
• Currently, the experiences of people with pancreatic cancer aren’t being captured. The Welsh Government should restart the Wales Patient Experience Survey, and work with charities and clinicians to make sure the experiences of people with pancreatic cancer are represented.

Do you have any other thoughts on what the Welsh Government should do improve pancreatic cancer outcomes, or any other personal experiences you want to share? You can add these thoughts here.