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July 2025 | Newsletter No.7 | #ncukintheloop
PATIENT STORY
From Diagnosis to Doing my own jab: my Lanreotide Learning curve
Neuroendocrine Cancer Site: Small Bowel
"Mr Jones, we think we can see something on your ultrasound. But it’s indistinct, so we would like you to go for a CT scan next week."
PATIENT BLOG
A LOVE THAT CARES, BY JAY THOMSON
When Neuroendocrine Cancer UK introduced the Hero Awards in 2024, they wanted to celebrate the quiet heroes. The caregivers, friends, and supporters who walk alongside patients every step of the way. Among those honoured was Jay, recipient of the Family, Friend & Supporter award, whose unwavering commitment to his partner Sarah moved not only the judging panel, but everyone who heard their story.
NEW PODCAST
Seeing it from Both Sides: A conversation with Kate and Craig
In a heartfelt new episode of Not Just NE Cancer, CEO Cathy Bouvier speaks with Kate Quirk and Craig Speirs—both dedicated NCUK staff and neuroendocrine cancer patients. They share unique dual perspectives on supporting others while living with cancer themselves. The conversation explores their personal journeys, professional roles, and the challenges of being both carer and patient.
LATEST NEWS
Rare Cancers Bill
We are delighted to announce that on 11 July 2025, Dr Scott Arthur’s Rare Cancers Bill passed its third reading in the House of Commons—a vital milestone for those affected by rare and less common cancers. A heartfelt thank you to everyone who contacted their MPs and to all supporters in Parliament. While the Bill now moves to the House of Lords, our work continues.
PATIENT EDUCATION EVENT 2025
We’re delighted to invite you to our in‑person Patient Event in Glasgow this November! Join us for an inspiring day of guest speaker presentations, meaningful conversations with doctors, and the chance to connect with fellow patients. Register via the button below.
Event Details:
- Date: Saturday 8th November 2025
- Time: 10:00am – 3:00pm (lunch included)
- Venue: Glasgow (Just a 10-minute walk from Glasgow Central Station
PATIENT SUPPORT GROUPS
Every week we offer a variety of support groups designed to meet the diverse needs of our community. With sessions led by caring staff or community facilitators, you’ll find a safe space to share stories, gain insights, and grow stronger together.
A great example was our recent Manchester Patient Support Group.
Despite the heat, July’s Manchester Support Group saw record attendance - the highest this year! Once just eight members post-COVID, we welcomed 22 attendees (including an Assistance Dog!).
"We talk openly, yet always honour confidentiality—what’s shared in the room, stays in the room"
Special thanks to CNS Natalie Barratt from The Christie for skilfully addressing questions about liver health and anxiety. We were thrilled to welcome attendees from York and Sheffield, including a visitor aiming to start a new group back home—showing real momentum in growing our community.
The next Manchester gathering will be on Thursday 10 September at 11 am, hosted at The Didsbury.
Click button below to view dates and locations for upcoming Patient Support Groups
FEATURED FUNDRAISERS
We’re incredibly grateful for our amazing and supportive community. In recent weeks, a remarkable group of runners took to the streets in support of Neuroendocrine Cancer UK — raising awareness, generating vital funds, and paying tribute to their loved ones.
Together, they’ve raised thousands and helped spark vital conversations about a cancer that is too often overlooked.
Thank you so much!
On 6 July, a determined team of fundraisers—including members of Coed y Mwstwr Golf Club and close friends—took on the scenic Brecon Carreg Porthcawl 10K to support their friend Caroline Griffiths. Battling the challenging coastal route, they’ve impressively raised £5,245.25, bringing valuable awareness alongside their efforts.
A HUGE THANKS
While we love to shine a spotlight on individual fundraising achievements, we want to extend our heartfelt thanks to everyone who supports Neuroendocrine Cancer UK. Your dedication, passion, and creativity make an incredible difference.
Did you know there are so many ways to get involved?
Visit our fundraising page below to explore the possibilities and start planning your next adventure today!
AUGUST'S WEBINAR: Focus on Small Bowel and CS
SPEAKERS: Mr Sam Ford, Consultant Sarcoma Surgeon, University Hospitals Birmingham
WHEN: Date: 6th August 2025 | Time: 6.00 - 7.30pm
GET DATA OUT
We are delighted to announce that we are working, alongside neuroendocrine cancer expert clinicians, with the National Disease Registration Service (NDRS) Get Data Out programme team, to add neuroendocrine cancers to the list of cancers the NDRS publishes data on.
RACE PLACES - SIGN UP NOW!
Neuroendocrine Cancer UK received no government or NHS funding, nor grants from larger cancer charities. We rely entirely on the generosity of our community to support this vital work, for which we are deeply grateful.
If you'd like to get involved and support us, take a look at the fundraising calendar below:
PLACES STILL AVAILABLE FOR VITALITY LONDON AND GREAT SOUTH RUN
Feedback please
Since this is a new format for our newsletter, we wanted to check in and see how we're doing. We’d appreciate it if you could take a moment to answer two quick feedback questions below.
Thank you
We don’t have NHS or government funding. We don’t have grants from the larger cancer charities.
We are solely reliant on the generosity of members of our community to fund our ongoing work, to whom we are so grateful.
We look forward to seeing you next month and keeping you in the loop!
Neuroendocrine Cancer UK
