Seminar to raise awareness of rare and uncommon cancers following motion

NET Cancer Motion

A seminar to raise awareness and support training for rare and uncommon cancers took place recently for GPs in Hackney.

The seminar at the West Reservoir Centre in Green Lanes, was organised by the Council and City and Hackney Clinical Commissioning Group (CCG), following the Council’s motion last October to raise awareness of rare and uncommon cancers.

The motion, thought to be the first of its kind in the country, aims to raise awareness of different forms of rare and uncommon cancers and to work with local partners to improve diagnosis and support for patients.

The ‘rare and uncommon cancer’ seminar focused on resources for GPs, diagnosis, treatment pathways and the advances in treating some rare and uncommon cancers. GPs from practices across the borough, Hackney’s Public Health team and the CCG attended the event supported by the NET Patient Foundation, a national charity, providing support and information to patients and their families.

There are more than 200 different types of cancer. A cancer is considered rare if fewer than six in 100,000 people are diagnosed with it each year. However, there are many types of rare and uncommon cancers, and 46% of diagnoses are in this category. Fifty five percent of deaths from cancer in 2016 were from those forms of cancers, and people living with a rare or less common cancer often report difficulties in diagnosis, treatment and care.

On average 22 people in Hackney are diagnosed with Neuroendocrine Tumours (NETs) each year and more than 100 people in Hackney are currently living with this uncommon cancer. More than half of NET cancers are diagnosed at an advanced stage, often because of the similarity of symptoms to other conditions.

49% of those diagnosed with cancer have a rare or uncommon cancer. The seminar shows the commitment of Hackney Council and its partners in this initiative, to carry out the actions of the motion passed last autumn. We had a great attendance - and I would like to thank all who attended. We have already started discussions about further events to be held over the next 12 months and look forward to continuing this incredible, pioneering collaboration.
Nikie Jervis, NET Patient Foundation

The motion commits the Council to:

  • Join the international NET community on 10 November each year, raising awareness of NET cancers among decision makers, health professionals and the general public;

  • Launch a campaign with Hackney GPs and the NHS Trust to work toward improving an understanding of this disease among medical professionals, contributing to reduce delays in diagnosis

  • Work toward ensuring that the inclusion of rare and less commons cancers in the Cancer Strategy for England is reflected in Hackney’s public health strategy

  • Work alongside councils across London to explore the mechanisms for a London-wide strategy to increase awareness of NETs and other less common cancers

  • Recognise living with cancer is a long term condition and work with our partners to ensure that no one has to face cancer alone

Cllr Feryal Demirci, Deputy Mayor and Cabinet Member for Health, Social Care, Transport and Parks

Cancer will sadly have affected many people’s lives in one way or another.  Whilst there have been huge advances in treatment and research overall, it is not the same for some forms of cancer. At least 55% of cancer deaths are from rare and less common cancers.  

I am really proud of the work by my colleague Cllr Carole Williams and Hackney for leading the way in this area - working with our healthcare partners to ensure more people are aware of Neuroendocrine cancers (NETs).  This seminar follows on from the motion in a programme of work where we are working towards improving diagnosis for rare and uncommon cancers, treatment and outcomes for people in Hackney.
Cllr Feryal Demirci, Deputy Mayor and Cabinet Member for Health, Social Care, Transport and Parks