Supporting the

Neuroendocrine Cancer Community

Hackney Council’s unanimous support for rare and uncommon cancers

Nov 1, 2018

NET Patient Foundation’s key purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst simulating NET research, increasing national awareness and influencing improvements in outcomes. 

Since NET Patient Foundation was founded in 2006, we have worked to address the unmet needs voiced by our patient population. We have advocated and lobbied alongside fellow cancer charities for political support and commitment to improve the lives, care and experiences of those affected by rare and uncommon cancers. 

Last night Hackney Council in an extraordinary step unanimously voted in favour of a motion that sets out the actions it could take to address the issues affecting anyone with a rare or uncommon cancer. 

[npfButton size=“small” text=”Read the full motion here” href=”” background-colour=”#37b8c0″ text-colour=”#ffffff”]

“The motion presented to the Hackney Council meeting last night is very proudly and whole-heartedly supported by NPF. It provides a unique opportunity to not only improve the lives and experiences of many people affected by cancer but also shows entires communities, specifically rare and uncommon cancer groups, that their voices are heard and their lives matter too.

NET Patient Foundation was co-founded in 2006 by CEO and fellow NET Nurse, Catherine Bouvier, I joined the charity three years ago. As NET Nurses, both Cathy and myself, have over the last 20 years seen how Neuroendocrine Cancer (NET) impacts on all aspects of everyday life, from the shock and unfamiliarity of diagnosis to how isolating that NET diagnosis can make people feel, from how symptoms have been misdiagnosed or mislabelled to how difficult it can be to access reliable, accurate information, expert clinical care and personal/family support. 

These issues and experiences are not exclusive to NET, they resonate across many rare and uncommon cancer groups. Groups often underrepresented or overlooked by decision and policy makers, despite the fact that rare and uncommon cancers currently account for 55% of all cancer deaths (a figure that is rising). 

By approving this motion and implementing the recommendations, Hackney Council in a pioneering step will help to not only improve but also save lives.” Nikie Jervis, NPF Patient Support Manager.