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.
NPF 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.
I am Catherine Bouvier, CEO of the NET Patient Foundation. I co-founded the NPF along side 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 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 NPF as part of everything they do.
Previously a Neuroendocrine Tumour Nurse Specialist, I was based at the Royal Free Hospital in London for 7 years and was responsible for the support, education and coordination of the management of day to day patient care. My educational role also expanded to other health care professionals both locally, nationally and internationally. I have worked on the production of various patient and medical educational tools and have coordinated a number of research studies for patients with Neuroendocrine Tumours. I set up a frontline nursing service holding regular screening, follow-up and emergency clinics. I am a member of UKINETS and other specialist neuroendocrine groups.
Nurse Specialist – Patient Support, Information and Education Manager
Nikie joined the NPF in November 2015. Nikie is responsible for supporting NET patients and their families throughout the U.K., whether face to face, through NET Natter groups, online or our advice line.
Education and information is an essential part of providing this support : from patient resources to education events to providing healthcare professionals with information, support and advice.
Prior to joining the NPF, Nikie worked as the Lead Nurse Specialist for NET at Kings Healthcare Partners ENETs Centre of Excellence. She has been a NET nurse specialist for more than 20years, with a background in HPB (Liver, pancreas, bile duct and small bowel disease including cancer) and education.
You will be able to contact Nikie via our helpline 0800 434 6476 or by email Nikie
Patient Support Nurse
Lindsey joined the team as a Patient Support Nurse in May 2017.
Lindsey supports NET patients and their families in the community, through the NET Natter groups, on our advice line, or online. Lindsey joined the NPF after 8 years caring for NET patients and their families as the Sister in Nuclear Medicine at an ENETS Centre of Excellence and has 17 years experience as a registered nurse.
You will be able to contact Lindsey via our helpline 0800 434 6476 or by email Lindsey
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 NET Retreat.
Leanne has has worked within the educational charity sector, where she has been responsible for organising professional events.
Kulli joined the team in April 2017 as a maternity cover for Leanne, responsible for administrative duties within the office.
Kulli is now full time member of staff and is the first point of contact. Her main responsibilities are email and phone communications, managing the post, as well as supporting the team on the daily basis.
Kulli has a background in customer service, education and management. Prior to joining NPF Kulli worked for 7 years in the Estonian education sector, first as a classroom science teacher and then as part of a senior leadership team.
Fundraising & Communications Officer
Bal joined the team as a Communications and Fundraising Officer in September 2017.
Bal is here to support all of our fundraisers with their events, challenges and anything else they are up to. She loves hearing about all the incredible things our supporters do to raise awareness and funds for NPF. Get in touch with her and let her know what you’re doing and she’ll help you along the way.
Bal also looks after all of the communications here at NPF including our social media and awareness raising campaigns.
Bal has over five years of experience working in the charity sector. Prior to joining NPF, Bal worked as a Senior Fundraiser at a national children’s heart disease charity where she led a small fundraising team.
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 the NET Patient Foundation.
- Peter Gwilliam (Chairman)
- David Jones
- Ros Littlejohn
- Marion Phillips
- Dr Rajaventhan Srirajaskanthan
- Irene Wotherspoon
Who else we work with
Prof. Martyn Caplin
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 NET Patient Foundation. 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 NET Patient Foundation as not only the premier UK NET support group but also an internationally respected and high profile group.
NET Patient Foundation is not just about support and information which is so important especially for rare cancers but also ‘patient empowerment’ so that NET patients can have what is rightfully due to them. Thus the importance of NET Patient Foundation 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 NET patients.
The NET Patient Foundation does fantastic work in collaborating with NET 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 NET Patient Foundation and the research grants it has developed.
I hope to continue to promote and help the NET Patient Foundation both nationally and internationally so that the voice of the NET patient is heard loudly and clearly.
Professor Martyn Caplin
Royal Free Hospital
Sir Peter Stothard
Sir Peter Stothard is Editor of the Times Literary Supplement and was Editor of The Times from 1992 to 2002. His book On the Spartacus Roaddeals, in part, with some of the symptoms associated with a neuroendocrine tumour of the pancreas for which he was successfully treated in 2000. ‘I am happy to support the NET Patient Foundation and its campaign for increased awareness and earlier diagnosis of this slothful but determined killer’.