Maria’s story: shaping The Big Picture

In May we launched our new online platform, called The Big Picture, to collect experiences of people affected by pancreatic cancer across the UK. We’ll be gathering insights on diagnosis, treatment and care, both from people who have had a diagnosis and those who have lost a loved one. 

The information we gather will enable us to show governments, health professionals and NHS leaders across the UK an accurate picture of pancreatic cancer, and what needs to be improved. To ensure that The Big Picture meaningfully reflected the needs and priorities of people affected by pancreatic cancer, we had the privilege of working closely with a group of people with lived experience to help shape the platform.  

Maria was involved in sharing her experience, from feeding in thoughts on what the aim of the platform should be, to identifying ways to make it as accessible and as inclusive as possible for people taking part.  

What inspired you to get involved with shaping The Big Picture? 

I lost my husband Phil to pancreatic cancer at Christmas 2024. It all happened so quickly and was devastating. Our retirement years together suddenly gone. Phil was a kind, loving and generous man always ready to lend a hand. I wanted to carry on his spirit of generosity by helping others where I could.   

On reflection, I realised you can spend a lot of time chasing around in a confusing system losing valuable time. Whether that’s in getting diagnosis or treatment or, at times, when it was really important just to be together. 

It took me a while to work out how I could help and be ready to. The Pancreatic Cancer UK nurses had been a lifeline. Helping us navigate the health system, providing practical and emotional support.   

I started with things I could do alone online using the excellent Pancreatic Cancer UK materials, such as; contributing to the consultation on the National Cancer Plan, and writing to my MP. It was going to a Pancreatic Cancer UK research event in Cambridge (the first time I met others and shared experiences), that led me to joining the project of building The Big Picture, harnessing the experience of individuals in their diagnosis, treatment and care to drive improvements for the quality of experience for all. 

What kind of activities did you get up to during this opportunity? 

Over six months I participated in online focus groups discussing: the purpose of the platform, how it might work, what would motivate people to take part, the barriers to involvement, and the best way to communicate what it is and why it is important.  

The project team did a great job in bringing options around messaging which sparked lively debate making you feel really involved. We also got to test an online draft version.

Regular and detailed feedback was given from which you could see how the platform was developing using the groups’ discussions. You could see the experiences of ourselves and our loved ones making a difference to the final platform. 

What were your highlights from this experience? 

As a first experience of group participation activity, it felt welcoming to be involved. I valued being with others who had similar experiences, and were able to talk about it however painful and use that experience and knowledge. All voices were heard and there was a real feeling of togetherness.  

Contributing to a project that will help improve the quality of life for families facing pancreatic cancer felt meaningful and cathartic. The Big Picture will be another important piece to the jigsaw of information and evidence needed to make a difference towards earlier diagnosis and driving the improvement for the best possible care and quality of life. A system that wraps around needs of families and not a hard maze to navigate. 

From this first volunteering experience, I will continue to channel Phil’s spirit of generosity to contribute to other projects. 

Coping with loss

We’re aware there’ll be many of you who can relate to Maria’s personal experience of losing a loved one to pancreatic cancer. We have information and advice about coping with loss, please do have a look or share with anyone who needs it.

Do you want to hear more stories of how people have brought their lived experience to participation opportunities? Have a look below!    

Mark’s story 

Our Services Reach Project story 

Our Gifts in Wills project story