A diagnosis of cancer is one of the greatest challenges anyone can face. Being diagnosed with a rare or uncommon cancer can have additional consequences, not least in terms of awareness, early diagnosis and access to expertise. Feelings of isolation, fear, uncertainty and anxiety are not uncommon.
Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.
In 2020, Neuroendocrine Cancer UK (formerly known as NET Patient Foundation) rebranded. We changed our name to better reflect our community, building on the foundation we have laid down over the last 17 years (2002 – Living with carcinoid, 2006 – NET Patient Foundation, 2020 – Neuroendocrine Cancer UK). We want to reduce confusion, and increase awareness of this cancer type and by giving us a more focused and explanatory name, we can better serve our community.
The ethos and mission of the charity remains the same – to support all affected by Neuroendocrine Cancer: to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.
Meet The Team
I am Catherine Bouvier, CEO of Neuroendocrine Cancer UK ( NCUK), formerly NET Patient Foundation. I co-founded the NET Patient Foundation alongside our current chair Peter Gwilliam and 2 NET patients, Andy Geach and Kathy Kalamis in 2006. I started working full time in the organisation in 2007.
My ultimate role is to remain the driving force behind an organisation that I truly believe in, and ensure that all staff, collaborators, and contractors focus on the purpose of the NCUK as part of everything they do.
I have dedicated the past twenty years of my career with an aim to improve the care and outcomes for neuroendocrine cancer patients. As the first dedicated Neuroendocrine CNS in the UK, and setting up the first UK wide charity, I have experienced extensive challenges, alongside a significant sense of achievement. My passion is to see eight strategic priorities in the Neuroendocrine Cancer field achieved: the protection of our world-class service, improving impact and outcomes for patients who follow a less common pathway, establishing patient experience as being on a par with clinical effectiveness and safety, promoting the necessary investment to deliver a modern and high-quality service for patients, both in the acute and community setting, the provision of standardised useful and accurate patient information, a significant increase in the research, education, and awareness in Neuroendocrine Cancers, ensuring commissioning processes are fit for purpose and that our community has the attention that is the right of all cancer patients.
information and Support Nurse Specialist
I am Nikie, the Information and Support Nurse Specialist here at NCUK. I joined the charity in November 2015 after more than 25 years within the NHS, primarily working as a Clinical Nurse Specialist (CNS) for Neuroendocrine Cancer.
My role is my ambition – and that is to ensure that everyone affected by Neuroendocrine Cancer, newly diagnosed to living with, knows that they have someone and somewhere where they can turn to for honest, reliable and fact-checked information, advice, and support. I
have seen how Neuroendocrine Cancer impacts on everyone affected and all aspects of their everyday life – from the shock of diagnosis to the uncertainty of the future, from managing symptoms to dealing with long term follow up – from feeling alone to becoming part of a community. Providing reliable, evidence-based information is an essential part of providing this support and providing safe spaces to talk – through our helpline, Natter groups and online forums – is essential to delivering this support.
I also have an educational role and have been privileged to work with members of the Neuroendocrine Cancer community, including our ambassadors, to develop information resources and ensure the “patient voice” and experiences are heard at both national and international educational events, and by both decision and policymakers across the UK.
Operations & Communications Manager
Leanne joined the team in January 2016 and is responsible for supporting the CEO and the general running of the office. Leanne organises all of our patient education events, including the NCUK Summit and Retreat.
Leanne manages our website and social media pages (Facebook & Instagram), so please get in touch with her and let her know if you’re planning an awareness event, or if you have any NC news that we should share.
Leanne has previously worked within the educational charity sector, where was responsible for organising professional events.
Kate joined the team in February 2021 and will be coordinating and supporting our Natter support meetings across the UK. Kate also manages our Twitter and LinkedIn accounts.
“Small charities can make big things happen, and I’m delighted to be officially joining the team at Neuroendocrine Cancer UK to help grow the patient-led support groups. These groups facilitate a place where the newly diagnosed (and those who have been on this journey for a while) can always find a warm welcome, sometimes some humour and always some compassion.
The sharing of stories and the support patients can offer each other can be incredibly uplifting, and I’m really looking forward to being a productive part of it.”
Beth joined the team in April 2021 and provides administrative support to the team.
Beth is responsible for dispatching any patient information and shop orders and supports all of our fundraisers with their events and challenges.
Beth loves hearing about all the incredible things our supporters do to raise awareness and funds for NCUK, so please get in touch.
You will be able to contact Beth on 01926 883 487 or by email.
Marketing & Communications Officer - ON MATERNITY LEAVE
Clare joined the team in November 2019 and is responsible for all of the marketing and communications here at the NCUK, including our social media and awareness raising campaigns.
Prior to joining NCUK, Clare worked as a PR Executive within the educational charity sector.
Administration Assistant - ON MATERNITY LEAVE
Famida joined the team in November 2019 and is responsible for providing administration support to our Operations Manager, Leanne. Famida is responsible for distributing all of the shop orders, fundraiser merchandise and all of the patient information to both patients and hospitals.
Famida has previously worked in administration roles.
Dr Martyn Caplin is a consultant in gastroenterology and hepatobiliary medicine at the Royal Free Hospital in London. In addition to his general practice in gastroenterology he is lead physician for the Neuroendocrine Tumour Unit at the Royal Free, leading a multidisciplinary clinical team as well as heading a research programme in neuroendocrine tumours. His research interests include gastrointestinal peptides, new targets for neuroendocrine tumour therapy, assessing the efficacy of targeted isotope therapy for neuroendocrine tumours and other interventional protocols.
“It is a great pleasure and honor to continue being a patron of the Neuroendocrine Cancer UK. I recall when we first set up ‘Living with Carcinoid’ in 2000 at the Royal Free Hospital and the team have done an amazing job in developing and establishing the Neuroendocrine Cancer UK as not only the premier NCUK support group but also an internationally respected and high profile group.
Neuroendocrine Cancer UK is not just about support and information which is so important especially for rare cancers but also ‘patient empowerment’ so that NCUK patients can have what is rightfully due to them. Thus the importance of Neuroendocrine Cancer UK in campaigning for PRRT, liaising with NICE etc and being a political voice to raise the profile of NETs and pressure the NHS for appropriate recognition for NCUK patients.
The Neuroendocrine Cancer UK does fantastic work in collaborating with NCUK specialists and UKI NETs as well as having a strong voice in Europe within ENETS and European Reference Network for Rare Cancers. Another true success has been the research programme and funding inspired by Neuroendocrine Cancer UK and the research grants it has developed.
I hope to continue to promote and help the Neuroendocrine Cancer UK both nationally and internationally so that the voice of the NCUK patient is heard loudly and clearly.” – Prof. Martyn Caplin
- Peter Gwilliam (Chairman)
- David Jones
- Irene Wotherspoon
- Marion Phillips
- Dr Rajaventhan Srirajaskanthan
- Ros Littlejohn
- Tom Jackson
The NCUK was co-founded by patients for patients, and we are delighted to welcome into the team our NCUK Ambassadors. They will work with us on a variety of projects maintaining the patient-centric ethos that underpins everything we do.