April 2026
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Hello and welcome to this month's Loop+
Loop PLUS builds on everything you love about Loop, offering added depth and insight into the work we do and updates from our team.
Neuroendocrine Cancer Recognised in Parliament: A Step Forward for Awareness and Patient Voice
We are delighted to see Parliamentary Politics Magazine publish MP Scott Arthur’s article, “Neuroendocrine Cancer: A Growing Crisis,” following his recent adjournment debate. The piece highlights the urgent need for improved awareness, earlier diagnosis, and fairer access to specialist care for people affected by neuroendocrine cancer.
The article reflects the challenges many patients continue to face, including long diagnostic delays, frequent misdiagnosis, and unequal access to specialist services. It also makes a clear call for a coordinated national approach to strengthen diagnostic pathways, improve data collection, and increase research for rare cancers.
This recognition is an important step forward in raising the profile of neuroendocrine cancer at a political level and ensuring that patient experience helps shape future policy and service improvement.
We would like to extend our sincere thanks to Craig, Liz, and Carolyn for sharing their experiences with MP Scott Arthur and helping ensure the patient voice remains at the heart of this work.
Investing in Impact: Announcing Our First 2026 Research Grants
We are pleased to begin announcing the projects that will be funded through our 2026 research investment of £100,000. This funding has been carefully designed to support both shorter-term, practice-based improvements and longer-term innovation to enhance outcomes for people living with neuroendocrine cancer. We are really grateful for the generosity of our community in enabling us to fund this research.
This year, funding is split across two grant types. Our Practice-Changing Grants (up to £5,000) support practical projects that can deliver real-world impact within 18 months. Our Pump Priming Grants ( up to £30,000 each) fund pilot projects aimed at generating evidence to drive longer-term improvements in care and outcomes for neuroendocrine cancer.
Today, we are announcing one winner from each grant stream, with further recipients to be shared next week.
Pump-priming grant: AI-based prediction of SSTR2 expression from H&E whole-slide images in small intestinal neuroendocrine tumours (SI-NETs) with exploratory Ki-67 grade-band estimation, Dr Tu Vinh Luong, Royal Free Hospital NHS Trust, £30,000
Practice-changing grant: Should primary small intestinal neuroendocrine tumours and carcinoid heart disease surgery be performed in large or small centres? A national outcomes study using linked NCRAS–HES data to produce an implementable UK referral pathway and survival machine learning models. Mohamed Mortagy, Hampshire Hospitals Foundation Trust, £5,000
Neuroendocrine Cancer Included in New Gastrointestinal Nursing Publication
We’re pleased to share the recent publication of Gastrointestinal Nursing: Care and Management of Digestive Disorders, a new resource supporting high-quality, patient-centred care for people living with gastrointestinal conditions. Importantly, it includes dedicated content on neuroendocrine cancer within Chapter 5: Pancreas and Neuroendocrine Cancers.
The inclusion of neuroendocrine cancer in a nursing text marks an important step forward for neuroendocrine cancer, helping to raise awareness, strengthen understanding among healthcare professionals, and ultimately improve care and outcomes for patients.
The chapter, co-authored by Stacey Munnelly, Alex Hadall, Scott Oakes, and familiar members of our community, Lynne McCallum and Nikie Jervis, provides clear, practical guidance on a range of pancreatic conditions, including pancreatic neuroendocrine cancers.
Edited by Leigh Donnelly and Shellie Radford: (Book first published: March 2026 / Print ISBN:9781394292813 / Online ISBN:9781394292844)
Patient Story: Tick, Tick, Boom
By Julie
"After inheriting the rare genetic condition MEN1, I spent years undergoing routine monitoring, always aware of the potential for tumours to develop. In 2025, that reality became clear when I was diagnosed with a pancreatic neuroendocrine tumour following a specialist scan. Since then, my journey has involved treatment decisions, ongoing uncertainty, and learning how to live with a rare cancer, while finding strength through support, self-care, and a determination to live life fully..."
A Day in the Life of... A Medical Physicist Delivering PRRT
Steve Jeans is a clinical scientist and medical physicist working in Nuclear Medicine at The Christie NHS Foundation Trust.
With over four decades of experience, he plays a key role in delivering advanced treatments such as Peptide Receptor Radionuclide Therapy for patients with neuroendocrine tumours.
Amplifying the Patient Voice Through Conference Engagement
Over recent months, NCUK has continued to expand its presence across the clinical and advocacy landscape, ensuring the needs and voices of people affected by neuroendocrine cancer remain central.
Through key national and international events including the Society for Endocrinology BES Conference, European Neuroendocrine Tumour Society (ENETS) conference, the ESMO (European Society for Medical Oncology) Rare Cancers Congress, and the British Nuclear Medicine Society, Molecular Radiotherapy meeting, as well as parliamentary and patient education forums, we have raised awareness, strengthened collaboration, and shared the patient perspective across research, clinical practice, and policy discussions.
Patient Voices at the Forefront: Nikie Jervis Highlights the Impact of Engagement in Advancing Radioligand Therapy and Cancer Care
Our Director of Support Services, Nikie Jervis, was recently invited to take part in and present at an SPCC* webinar on radioligand therapy. The session explored how advances in nuclear medicine are changing the way cancer is diagnosed and treated, alongside challenges such as HTA decision-making and workforce capacity. Nikie shared patients’ experiences and expectations of care, highlighting the growing role of patients in shaping care pathways and clinical trial design. She also emphasised the importance of sustaining and promoting this involvement, as evidence to date shows that meaningful patient engagement benefits patients and researchers alike, while helping to advance disease understanding and improve care.
Sharing Progress in Cancer Care (SPCC)* is an independent, non-profit organisation dedicated to sharing and integrating knowledge on scientific progress, innovation, and best practice across the cancer care continuum — from prevention and early diagnosis through to treatment and support after treatment.
Patient Empowerment and Self Advocacy
Our Snr Patient Support Coordinator, Kate Quirk, also sits on the INCA Research Committee and recently took part in an educational video which supports Patient Empowerment and Self-Advocacy.
Kate says: "Informed patients have better health outcomes and higher satisfaction with their care. It's up to us to be part of better communications with the teams who care for us and take part in shared decision-making."
You can watch the full session here:
https://incalliance.org/advocacy-skills/
Also available on YouTube with direct timestamps:
INCA Features BTOG Podcast
We are delighted to be INCA's podcast feature this month. As many of you will know, we are members of the International Neuroendocrine Cancer Alliance, the global voice in support of patients with neuroendocrine tumours (NETs) and genetic syndromes (GenNETs).
INCA is an umbrella organization representing 36 patient advocacy and research groups from around the world.
Click on the button to listen to 2 of the UK's Lung experts as they are interviewed for BTOG's (British Thoracic Oncology Group) educational series.
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.
All agreed and scheduled groups are listed on our Events Calendar : which is currently being populated with all agreed 2026 dates.
Join our next monthly webinar for compassionate, practical guidance on supporting dignity, comfort, and choice at the end of life. Designed for those affected by neuroendocrine cancer, this reassuring session will explore planning ahead, having honest conversations, and managing symptoms with care. We’ll also highlight the emotional and practical support available for patients and families.
Featuring expert insights and a welcoming space to ask questions, this webinar offers clear, gentle guidance during one of life’s most challenging times.
Date: 13 May 2026
Time: 6:00–7:30pm
Location: Online (Zoom)
Speaker: TBC
Contact: nikie@nc-uk.org
Register to receive your joining link. We look forward to welcoming you.
How we can support you
Living with neuroendocrine cancer can be incredibly challenging — not only physically, but also emotionally and mentally. A diagnosis can bring uncertainty and anxiety, affecting not just the person living with cancer, but also family members, friends, and carers. Acknowledging these feelings and seeking support is an important part of looking after your overall wellbeing.
Many people find reassurance and comfort through our Helpline or by attending one of our Patient Support Groups.
For others, a more actively therapeutic level of support can be helpful.
At Neuroendocrine Cancer UK, we are committed to offering comprehensive mental health support to help you — and those who care for you — navigate these challenging times. Through our partnership with Rareminds, we provide access to a dedicated counselling and psychotherapy team with experience and understanding of the specific emotional and psychological challenges of living with a rare and complex condition like neuroendocrine cancer.
We are pleased to confirm that self‑referral for our free-to-access counselling service reopened on Monday 13 April, following a short temporary pause. Due to very high demand, the service had reached capacity, and referrals were briefly suspended to ensure everyone accessing support could do so safely.
For more information about our Counselling & Psychotherapy Services, please visit our Counselling & Mental Health page HERE.
Neuroendocrine Cancer UK Ambassador Series
By Maria
My name is Maria, and I became an Ambassador for Neuroendocrine Cancer UK in 2021 after my diagnosis followed seven years of unexplained symptoms and misdiagnosis. Receiving this news during the COVID-19 lockdown made an already difficult experience even more isolating. Since then, I’ve been committed to raising awareness, supporting earlier diagnosis, and amplifying the patient voice to improve understanding and outcomes for those affected by neuroendocrine cancer.
One NCUK: A Defining Moment for the Community
Connecting what we do. Learning from each other. Amplifying our impact.
For the first time, NCUK brought together ambassadors, support group facilitators, trustees and staff in one room, marking an important moment for the organisation and the community it serves.
What stood out immediately was the energy. This wasn’t just an event, but a chance to step back, connect, and reflect on both how far NCUK has come and where it is heading next. At the centre of the day was a clear idea: One NCUK.
Goodbye & Good Luck, Olivia
It is with mixed emotions that we share the news that Olivia has now left NCUK. While we’re thrilled that her NHS role has opened up new and exciting opportunities, we’re also very sad to see her move on from the team.
Over the past three years, Olivia has been a hugely valued member of NCUK, making an incredible contribution to the Support Team and the charity as a whole. Many of you will know her from the Helpline or from our online and face‑to‑face Support Groups, where her warmth, compassion and understanding have made a real difference to so many people.
Although we’ll miss her greatly, we’re delighted to see her role at the Beatson continue to grow and develop — and the good news is, this isn’t a full goodbye.
Olivia will remain a valued part of our national nursing group, our wider healthcare professional community, and our webinar presenter alumni.
Please join us in thanking Olivia for her dedication, positivity, professionalism and friendship over the past three years. We wish her every success and happiness in the next chapter of her career.
This isn’t really goodbye — more of a “see you later,” as we look forward to continuing to work together in a slightly different way.
With warmest wishes,
Your NCUK family and friends
Welcome to Our New Health & Wellbeing Nurses
We’re delighted to welcome Holly and Erica to the team as our new Health & Wellbeing Nurses. They bring valuable experience and a shared commitment to supporting people affected by neuroendocrine cancer. Holly and Erica will play a key role in providing practical advice, emotional support, and guidance to patients and families, helping to strengthen the care and wellbeing support we offer across our community.
In case you missed it...
We’re excited to share the launch of The Invisible Cancer Podcast.
In the first episode, we hear directly from Kerie and Gordon, who contributed to the Invisible Cancer Report, as they share their lived experience of neuroendocrine cancer. They reflect on the reality of delayed diagnosis and highlight why raising awareness and improving visibility is so important for others affected by the condition. Listen here
Share Your Diagnostic Journey
We are pleased to be collaborating with OpalMedica on a new patient-led platform designed to help reduce delays in diagnosing rare diseases. The KLEOS™ ‘My Rare Journey’ platform enables people to share their diagnostic experiences to help identify patterns, support healthcare professionals, and ultimately improve and speed up diagnosis for others. By contributing your story, you can help strengthen understanding of neuroendocrine cancer and make a real difference to future patients.
Click here for more info & to take part
Do you have a pNET (pancreatic neuroendocrine tumour) diagnosis?
Help shape a new quality of life questionnaire for people with pancreatic neuroendocrine tumours. Your input will support better understanding and measurement of patient experience.
Click here to learn more and take part.
Fundraise for Us and Support the Neuroendocrine Cancer Community
We’re incredibly grateful for our amazing and supportive community. 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!
A monthly donation helps us to help others
Please click on the video above to watch
One of the most effective ways to support our work is through a monthly donation. Regular giving allows us to plan ahead, expand our services, and provide ongoing support to people when they need it the most. Even a small monthly contribution can make a real difference to the lives of people affected by neuroendocrine cancer.
Did you know? We receive no government funding, no funding from larger cancer charities, and no money from the NHS. We rely entirely on the generosity of people like you, our community, to keep going.
You can make a difference by making a monthly donation
A monthly donation is one of the best ways to ensure that we can continue to provide support to people affected by neuroendocrine cancer. Regular donations also allow us to plan for the future and to expand our services.
£10 a month will fund monthly webinars and resources to help patients better understand their disease.
£15 a month will help us to invest in our helpline, providing much needed support to rising numbers of patients and families coping with diagnosis, treatment or emotional distress.
£25 a month will allow us to expand our counselling services, so that we can continue to provide support and care for patients and their loved ones at a time when they need us the most.
£50 a month will enable us to invest in research projects that are designed to improve outcomes in neuroendocrine cancer.
Thank you for your support.
Looking Ahead: Support with Writing Your Will
Neuroendocrine Cancer UK provides support to all those affected by neuroendocrine cancer as well as education, resources and information for healthcare professionals. From providing a helpline and counselling services for patients, to raising awareness about this cancer that is often missed, misdiagnosed and misunderstood, we put patients, families and carers at the heart of everything that we do.
Maybe you or someone that you love has been supported by our charity? We are fortunate that much of our support comes from people, or the loved ones of people, who have received support from us.
By choosing to leave a gift to us in your Will, you will leave a lasting legacy that will change the lives of others.
We have teamed up with Farewill, an award-winning Will writing provider, to offer our supporters the opportunity to write their Will for free.
Although there’s no obligation to leave a gift to Neuroendocrine Cancer UK if you use the free Will writing service, anything that you may decide to leave to us will be gratefully received. If you are interested in writing your Will for free please click on the button below.
