Raising awareness of rare and uncommon cancers in Hackney, following Council motion

Following a motion passed by Hackney Council over a year ago, to increase awareness and action on rare and less common cancers, work has been ongoing to increase understanding and action from health professionals to improve outcomes for patients in Hackney. 

The Council passed a motion in October last year, thought to be the first of its kind in the country, to raise awareness to help improve diagnosis and support for patients. The Council has worked closely with health partners, including City and Hackney Clinical Commissioning Group, (CCG), and charities such as the NET Patient Foundation to provide training for health professionals and engage with residents living with rare and uncommon cancers. 

Earlier this year, City and Hackney CCG organised a GP training event in March, supported by Hackney Council’s Public Health team. The GP seminar focused on resources, diagnosis, treatment pathways and the advances in treating some rare and uncommon cancers. 

This month following a meeting with patients living with rare and less common cancers a video has been recorded that highlights their experiences of living with uncommon cancers, including neuroendocrine cancers, (NETs). The video which will be will be used as a resource to increase general awareness about the reality of living with a rare or uncommon cancer and as an information tool for families and friends of patients to help increase their understanding and support. 

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.

Dr Nicole Klynman, Consultant in Public Health, Hackney, said: “We have been working very closely with City and Hackney CCG and other partners over the last 12 months to raise awareness amongst health professionals and partner organisations of such cancers including neuroendocrine cancers, (NETs). Sadly, 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. We hope through this ongoing work and engagement we can ultimately improve outcomes for all patients and increase understanding and awareness.”

The video highlighting patients' experiences will be published online later this month to help increase awareness and understanding of what it is like for people living with rare and less common cancers.