Supporting the

Neuroendocrine Cancer Community

ABOUT

NEUROENDOCRINE CANCER UK

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.

THE HISTORY OF NCUK

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.

OUR VISION

Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.

OUR MISSION

Our purpose is 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.

OUR VALUES

  • Equality of care for all Neuroendocrine Cancer patients in the UK
  • Excellence in support, care, treatment and research
  • Fair allocation of national resources and inclusion in national
    policies and strategies for all cancer types
  • Collaborative working and building an accessible, approachable fraternity
  • Honesty, transparency and integrity to promote confidence and trust in the charity.

Meet The Team

Catherine Bouvier

Catherine Bouvier

NCUK Co-Founder & CEO

I am the CEO and co-founder of NCUK, and my overarching role is to remain the driving force behind the organisation that I extremely passionate about, and to ensure all staff, collaborators, and contractors focus on the purpose of the NCUK as part of everything they do.

Charities have a huge responsibility to utilise donations in the right way, in a way that benefits the community that they serve. One of my other key roles is to keep a focused approach to our work, remembering daily our vision, our mission, and our values.

Nikie Jervis

Nikie Jervis

Patient Engagement, Education & Policy Lead

My role involves; working with members of the Neuroendocrine Cancer community, to provide information, education and support. To which end I am responsible for the provision, maintenance and sustainability of our support services: Helpline, Natters, Online forums and Patient Resources content.

I also am responsible for leading the organisation’s education and policy work, including; HCP educational resources and working with regulatory, health service and other agencies, including NICE and NHS bodies, representing, and supporting representatives of, the Neuroendocrine Cancer community.

Leanne Talbot

Leanne Talbot

Operations Manager & Digital Lead

I am the key support for the CEO and manage the smooth running of all the organisation’s operations. I co-ordinate all of our face to face and virtual events and have the pleasure of being the main contact for all of our wonderful fundraisers. This includes co-ordinating our yearly fundraising activities.

I am responsible for managing and updating our website and designing all of the organisation’s patient information and literature. I also am responsible for leading the organisation’s social media campaigns.

Clare Gerrard

Clare Gerrard

Marketing & Communications Officer

I am responsible for creating and sharing regular e-bulletins and a monthly newsletter. I share regular messaging across social media and assist in engaging in wider community initiatives via social media and online.

Kate Quirk

Kate Quirk

Neuroendocrine Cancer Support Coordinator & Med-Twitter Linkedin SM

I coordinate and support our Natter Patient Support meetings across the UK. I also manage our Twitter, LinkedIn accounts and monitor our Facebook support groups.

I’m also a Research Advocate for INCA (International Neuroendocrine Cancer Alliance).

 

Lisa Walker

Lisa Walker

Campaigns Officer

My role entails working on specific campaigns to bring about tangible and positive change to the lives of people with Neuroendocrine Cancer (NC), their family and friends. Some of the campaigns include FIND the Gap (finding the current unmet needs in NC), Bridging the Gap (creating solutions to fill the gap in NC care), and MIND the gap (supporting those with NC cope with the psychological burden of the disease).

Famida Bishop

Famida Bishop

Administration Assistant

I deal with all data input, including new subscribers, support contact forms, financials, shop orders and free resources for patients and health care professionals.

Jackie Clews

Jackie Clews

Administration Assistant

I am responsible for dispatching patient information to the community and to hospitals. Processing all of the organisation’s donations and managing our online shop. I also monitor our Facebook groups and liaise with our wonderful Facebook fundraisers.

Professor Martyn Caplin

Professor Martyn Caplin

Patron

Prof. 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

Our Co-Founders

Our thanks to Peter Gwilliam, Liddy Oldroyd, Andy Geach and Cathy Kalamis for all of their inspiration and hard work in helping to set up Neuroendocrine Cancer UK.

Trustees

  • Peter Gwilliam (Chairman)
  • Irene Wotherspoon
  • John Kent
  • Dr Rajaventhan Srirajaskanthan
  • Ros Littlejohn
  • Tom Jackson

AMBASSADORS

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.

COUNSELLING TEAM

NCUK have teamed up with Rareminds, a not-for-profit Community Interest Company (CIC), who have been providing online counselling and wellbeing services for rare disease charities since 2014.

The Rareminds counsellors offer support during particularly difficult times or in making sense of present difficulties that may stem from past experiences. In so doing, it can often be possible to find ways of understanding and managing difficult feelings or situations differently. They can also help you with strategies and techniques for managing particular issues such as panic attacks, fatigue, anxiety around scans/treatments.

ABOUT RAREMINDS

We are a not-for-profit Community Interest Company (CIC) and have been providing online counselling and wellbeing services for rare disease charities since 2014.

Our mission is to provide affordable, timely access to highly specialised counselling and wellbeing resources, and raise awareness about the emotional impact of living with rare conditions.We support professionals and patient leaders in making mental health integral to rare disease patient care.

WHO ELSE WE WORK WITH

As the saying goes No Man Is an Island. We recognise that in order to best serve our community and function well as an organisation, we need to work collaboratively with others. We are proud to work in partnership with INCA, ENETs, UKINETs, Maggie’s, AMEND, ACCSupportUK, The Ann Edgar Charitable Trust & Cancer52, amongst others.

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NCUK' S ANNUAL ACCOUNTS