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Partnering to Improve Pancreatic Cancer Care Pathways

By Ivan McMinn, NIPANC Trustee

NIPANC is excited to be partnering with Pancreatic Cancer UK and the Department of Health to bring about the change needed to transform outcomes for those diagnosed with this devastating illness.

I have no doubt, through a determined focus, the benefits of our partnership will be felt in NI, across the rest of the UK and well beyond these islands.

This work is exciting and truly pioneering.

Deep gratitude also to Andy Smith for the courage to share his story. It captures the powerlessness and frustration felt by many local families who have lost a loved one to this ‘Silent Killer.’

It signals a need for change. It also shows, if ever there was a time to address the atrocious statistics and marginal gains made in the treatment of pancreatic cancer over the last 40 years, it is now.

280 people are diagnosed with pancreatic cancer in NI each year. Last May, we and our research partners at the Northern Ireland Cancer Registry at Queens released the results of the first audit in over 10 years into pancreatic cancer in NI.

It showed an 86% increase in confirmed cases rising from 152 in 2001 to 283 in 2020. The findings prompted us to call for a strengthening of local pancreatic cancer services.

This new collaboration with the Department of Health and Pancreatic Cancer UK is a major step forward in bringing about much-needed consistency and reform to patient pathways.

Throughout the year and particularly during the month of November, NIPANC campaigns hard, leaving no stone unturned, to persuade members of the public and medical profession to learn about the symptoms of the disease and seek early diagnosis and treatment.

There are amazing new technologies and treatments on the horizon, as we have heard today from our colleagues at SonoTarg. This is exciting work. Yet still the best way of surviving and improving a pancreatic cancer prognosis is to follow our campaign advice.

Like Andy, NIPANC is no stranger to powerful storytelling. By giving voice to lived experience leaves pancreatic cancer one less place to hide.

For 2023, our public awareness campaign highlights the experiences of five pancreatic cancer survivors of which I am one. I have survived a diagnosis twice and am now in my 13th year. That means I am among only 1% of people to survive this disease past ten years.

The five of us are a rare breed indeed.

By telling our stories in the public domain, we wanted to show there is hope and optimism.

That with early diagnosis, rapid referral and excellence in patient pathways, people can and do survive this disease.

Each of us share a few things in common. We are all examples of medical best practice. We were fortunate enough to have GPs who were vigilant to the complex signs and symptoms of pancreatic cancer. We were diagnosed on time, red flagged and expedited through the system from primary to secondary care. Typically, our patient pathways were between three to six weeks from diagnosis to surgery.

We know we are the lucky ones because most patients don’t survive beyond five years. Our good fortune however is probably more by accident rather than design.

As living examples of people who have survived this illness and as campaigners, we say it is not good enough to leave things to chance. Serendipity does not save lives.

At NIPANC, we are determined to do more and do better for others who are yet to walk a terrifying mile in our shoes.

We will play our role along with the Department of Health and Pancreatic Cancer UK to share our experiences, encourage best practice and add value to excellence in the work that has gone before.

We come with local knowledge, the latest research, significant medical expertise, and strong pancreatic cancer connections, ready to make a difference.

This announcement on the last day of our #TimeMatters public awareness raising campaign during Pancreatic Cancer Awareness Month is very welcome news.

Please familiarise yourself about the symptoms of pancreatic cancer here


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