NIPANC

We are excited to bring you more news about our recently announced partnership with Kingsbridge Healthcare Group Private Hospital which will see the creation of a co-funded, free-to-use, Pancreatic Cancer Support Nurse. It will be the first of its kind in NI and will provide support and signposting for patients and their families facing a diagnosis of this devastating illness. We are moving quickly to recruit the position to make that help available as soon as possible. More on this and the additional benefits of the new NIPANC, Kingsbridge alliance in this short video. What a positive way to bring our Pancreatic Cancer Awareness Month - #PCAM - Partners in #TimeMatters, Working Together, Changing the Future campaign almost to a close. Just a few more days to go. Please familiarise yourself with the symptoms of pancreatic cancer - nipanc.org/symptoms - and be persistent in seeking early diagnosis and treatment.

Lana Cook is the fourth and last of our NIPANC supported PhD research students we are partnering with in collaboration with Queen’s University Belfast. The title of Lana’s PhD is ‘Exploring the Lived Experiences of People Diagnosed with Pancreatic Cancer in Northern Ireland’. Over the next year, she will be speaking to people diagnosed with the disease; care partners, family and other people involved such as health care professionals, advocates, chaplains, or support workers. You can read more on Lana’s blog on our website by clicking the link here: https://lnkd.in/ehiex8eM

“I want to create a theory to explain their pancreatic cancer journeys, from pre-diagnosis to treatment and beyond to either survivorship or end-of-life. The research approach I’ve chosen is called ‘grounded theory’ which means I’ll learn directly from the people who participate in my research, not just about them. So, I’ll begin by listening to people’s experiences, and the theory will emerge from what they share with me.” Later this evening at 7pm, we will be introducing you to, Lana Cook (34) from Scotland (now resident in Belfast.) Lana is our fourth and final NIPANC supported PhD student we are showcasing as part of our Partners in #TimeMatters, Working Together, Changing the Future campaign for #PCAM. The title of her research is called Exploring the Lived Experiences of People Diagnosed with Pancreatic Cancer in Northern Ireland. Over the next year, she will be speaking to people diagnosed with the disease; care partners, family and other people involved such as health care professionals, advocates, chaplains, or support workers. This vital work helps us understand the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland; their shared experiences and insights helping to potentially improve the lives of others diagnosed with this devastating disease in NI and further afield. Thank you, Lana, for all you do to support our work at NIPANC.

We are incredibly proud of the work being undertaken by our Trustee, Lisa Strutt, MCIPD who lost her husband John to pancreatic cancer, four years ago in October 2020. The experience left her reeling, not only having to cope with her own grief but also the fears and profound loss of her three teenage children. Earlier, we featured a powerful video she created with the help of the Lyric Theatre, Belfast, Walking in My Shoes, which uses a metaphor of different kinds of footwear to bring to life what it feels like for families to navigate a terminal illness and the skills needed to have end-of-life conversations with children and young people losing a significant adult to cancer. Lisa has since teamed up with top researchers at the University of Ulster, Professor Cherith Semple and Dr Jeff Hanna to produce a suite of resources to support family centred cancer care conversations. Over 1000 health and social care professionals in NI and the UK have since received training. Her determination to support others continues. Alongside Cherith and Jeff, she has recently co-authored a chapter ‘Understanding the Grief and Loss Experiences of Carers’ in a publication that brings the carer’s journey of pre-and-post bereavement to the forefront of cancer research. This new textbook will be central to higher education curriculum programmes including psychology, nursing, sociology, and social work. It will inspire a profound shift in how we discuss death, grief, and the lasting impact of loss transforming both clinical practice and, more importantly, the lives of those who walk this path. Lisa was also recently given one of four ‘Nettle Awards’ for her collaborative work at a NICON conference attended by 750 delegates from across the HSC sector to transform the Health Service. It is awarded to someone literally ‘grasping a nettle’ around a healthcare issue and doing something about it.’ Partners in #TimeMatters. www.nipanc.org/symptoms

“The lived experience is the loudest voice.”   This week, as we bring our Partners in #TimeMatters, Working Together, Changing the Future campaign to a close, we’ll be focusing on the powerful, personal stories of Lisa Strutt, MCIPD and Michelle Bradely. Both women lost their husbands to pancreatic cancer before the age of 50.   Stories like these are our why; the reason we do what we do. They are our motivation, to do more, to do better, to continue to seek out new alliances and collaborations that help us constantly improve our services. Because no-one should have to face a pancreatic cancer journey alone.   Today, we hear from NIPANC Trustee, Lisa Strutt who lost her childhood sweetheart, John to pancreatic cancer in 2020. As well as having to cope with her own grief, Lisa helped her three teenage children navigate theirs.   The experience led to learning, turning the pain of her family’s ‘life-quake’ into purpose and Lisa into a passionate advocate for family centred cancer care.   In Walking in My Shoes, Lisa brings to life what it feels like for families to navigate a terminal illness by crafting a powerful metaphor, using different kinds of footwear. The film, produced with the Lyric Theatre, opened our Partners in #TimeMatters #PCAM conference at QUB and you could have heard a pin drop.   Lisa has since teamed up with Ulster University’s Professor Cherith Semple and Dr Jeff Hanna. They are leading international researchers in family-centred cancer care and together, they have developed a suite of resources to help families, and the professionals who support them, navigate end-of-life cancer conversations.    This collaboration has already seen over 1000 people across NI and further afield receive training. With one in 18 children experiencing the death of a parent or significant adult before the age of 18, many caregivers worry about how to navigate conversations about end of life. These resources are helping health and social care professionals become better equipped to have those conversations. https://lnkd.in/eA3-vMv4

“From the moment we take our first breath, one thing is certain, each one of us will meet with death. We just don’t know the route we will take to get there.” Powerful words from NIPANC Trustee Lisa Strutt, MCIPD. Across today, we are featuring her partnership work with academics from Ulster University to develop learning resources around Family Centred Cancer Care Conversations. Her contribution stems from her lived experience of coping with grief and that of her three teenage children when four years ago their dad was dying of pancreatic cancer. It’s no coincidence Lisa is pictured here (right) with our Trustee, Susan McLaughlin, under the QUB foyer clock. The image was taken at the very start of our Partners in #TimeMatters, Working Together, Changing the Future conference to launch our contribution to #WPCAM. These strong and courageous women both lost their husband’s John (in 2020) and Colin (in 2013) respectively to this devastating illness and are united in their determination to change pancreatic cancer outcomes for the better. For NIPANC, the clock is a potent symbol. We use it to warn that time really does matter when it comes to diagnosing and treating pancreatic cancer. It also reminds us that time is not a given but a highly valuable, precious commodity. We did not know then that today we would be saying our final goodbyes to Susan’s second husband, David, Robert (Roy) McLaughlin who died suddenly following a hospital procedure last Monday. Married for five-years, he had joined his wife on her mission to improve the experiences and lives of those facing a diagnosis of this devastating cancer in NI. That takes a very special type of person. Roy met with death, just shortly after helping Susan organise our NIPANC conference at Queen’s. He was always at our events, by Susan’s side, quietly in the background, camera at the ready to capture special moments. He made sure everything was as it should be. Rest in peace, David Robert, Roy McLaughlin. We could not have hoped for a better, more loyal, supporter and friend.

Today, as we near the end of Pancreatic Cancer Awareness Month #PCAM, we’ve been reflecting on how far we’ve come since registering as a charity only five years’ ago. This is our fourth major #TimeMatters campaign. The first focused on our Board members stories pictured beside some of NI’s most iconic clocks. The images reinforced our key message, that time really does matter when it comes to surviving pancreatic cancer. Our second looked at how young people who have lost a parent are impacted by the disease, the third told survivor stories. It showcased best practice in early referral, diagnosis, and treatment and was a message of hope that people can and do survive if symptoms are recognised and early preventative action is taken. nipanc.org/symptoms For 2024 in our Partners in #TimeMatters, Working Together, Changing the Future campaign, we continue the theme of positivity. Throughout November, we’ve been showcasing how we make a difference to patient experience and pancreatic cancer outcomes in NI by aligning ourselves with other like-minded organisations who help to make our work possible. In just five years, we have established a counselling partnership with Cancer Focus Northern Ireland offer a Making Memories grant to allow families create positive end-of-life experiences together and a photography service to capture precious family moments. Later this week, we’ll provide more detail of another exciting new development. That is the co-funding of a free-to-use Pancreatic Cancer Support Nurse in partnership with Kingsbridge Private Hospital. The role is currently being recruited and will support and signpost patients and their families when help is critically needed. This and other benefits the Kingsbridge Private Hospital collaboration brings is a game changer for NIPANC’s service provision. None of this, of course, would be possible, without your help and support. Thank you for all that you do.

All work and no play at the 49th Annual Scientific Meeting of the Pancreatic Society of Great Britain and Ireland would make NIPANC a very dull team. Sometimes the best collaboration and the most craic comes when the nine Trustees get together. Pictured top, left and right are Partners in #CrimeMatters, Professor Mark A Taylor, a leading NI Hepatobilliary Surgeon with NIPANC Chairperson and pancreatic cancer survivor, Ivan McMinn MBE. Bottom left, and the rose between the two cold water swimmers is cycling sister, now NIPANC Trustee, Cathy Booth. She’s the chief instigator pretending right to stock up on calories. A great team taking some time out to recharge their batteries before more conference activities today to end a fantastic week.

Week four begins and is the last in our Partners in #TimeMatters, Working Together, Changing the Future campaign for #PCAM. We are going light on content today because from Monday and throughout next week it is going to be a big build up and an emotional end to what has been a fantastic month. Thank you so much for your continued support, for all the likes, comments and shares that help us reach a much bigger audience with our key #TimeMatters message. Know the symptoms of pancreatic cancer and seek early diagnosis and treatment. Be persistent if you have too. The line up looks like this. There will be powerful story telling from NIPANC Trustee, Lisa Strutt and from our service user Michelle Bradely. Both women lost their partners to pancreatic cancer; Lisa, her husband John four years ago and Michelle more recently on September 4th. You could have heard a pin drop when both women courageously shared their devastating pancreatic cancer journeys at our event to open #PCAM at QUB in Belfast. As Professor Mark Taylor said: “The lived experience is the loudest voice.” Their words will show just how important it is we continue our work to raise awareness about the symptoms of pancreatic cancer, fund research and support individuals and families who have been told they have pancreatic cancer. They will prove the case, if ever it was needed, that more needs to be done to change the outcomes for patients and their families for the better. Next week also showcases the important work of our last PhD student Lana Cook and a film on our developing partnership with Kingsbridge Private Hospital that will see the first-of-its-kind, co-funded, free-to-use Pancreatic Cancer Support Nurse for NI as well as other benefits. Michelle’s story will feature in Sunday Life, raising even more awareness to close out the campaign. Have a great weekend.

‘The lived experience is the loudest voice.’   Professor Mark A Taylor addressing the 49th, Annual Scientific Meeting of the Pancreatic Cancer Society of Great Britain and Ireland and putting patients and their families at the heart of the conversation on this, World Pancreatic Cancer Awareness Day.   “We have everything to learn and even more to gain from listening to and understanding the journeys of individuals and families who have been faced with a diagnosis of this devastating cancer. We need to do better. Our NIPANC funded audit into pancreatic cancer in NI, with research carried out by the Northern Ireland Cancer Registry, clearly shows there are delays in the timeline between diagnosis and treatment. We can and must do better by speeding up those timelines.”   Professor Taylor was speaking on behalf of a unique partnership between NIPANC, national UK charity Pancreatic Cancer UK and the Department of Health for NI, as part of our Partners in #TimeMatters Working Together, Changing the Future, contribution to #PCAM.   He described how, since last year, we have been collaborating to significantly improve timescales for pancreatic cancer diagnosis and treatment.   That means minimising the barriers and optimising the conditions in which patients can be fast tracked through primary to secondary care, speeding up diagnosis treatment and improving survival outcomes.   “The ambition is to ensure there will be no more than 21 days to diagnosis and a total of 42 days to treatment. If we can get this, as a test case right for the pancreas, we will be able to roll the learnings out for not only pancreatic cancer but for other more common cancers, such as breast, bowel, and lung.”   Professor Taylor said: “Time matters between diagnosis and treatment. In between those times there is massive anxiety for patients and their families. That’s why it is important, we as clinicians work with those who have lived experience and with charities because, time really does matter.”   Lived experience will be our focus next week as our Partners in #TimeMatters campaign comes to a powerful close.