PATIENTS with rare or less common cancers are often faced with restricted access to appropriate clinical expertise, treatments, as well as a lack of awareness and understanding of their rare cancer.

That is why Cllr Feryal Clark and Mayor Philip Glanville wrote to the Government ahead of #NETCancerDay on 10 November, calling on the Government to improve diagnoses of all cancers at an early stage and for greater focus of attention on research, high standards of medical care, and  support for patients #Letstalkabout NETs #NETCancerDay

In October 2018, Hackney Council unanimously passed a motion pledging to raise awareness of, and support training and research into, rare and uncommon cancers. It is thought to be the first motion of its kind in the country.

https://news.hackney.gov.uk/council-passes-motion-on-rare-…/

Support for NET Cancer Day from Cllr Ian Rathbone

This year, on NET Cancer Day, we are calling for:

Improve diagnoses of all cancers at an early stage

Urgently address the staffing crisis so that the current targets under the Long Term NHS Plan can deliver a better future for those living with rare and less common cancers

Ensure a greater focus of attention is placed on research and high standards of medical care and support for patients

Proportionally fund clinical studies of rare diseases and rare cancers – creating parity and improved equality

Ensure the exchange of experience, information, data, collaborative research, and best practices on rare cancers is guaranteed, following Britain’s exit from the European Union

Call on pharmaceutical companies to prioritise development of medicines for rare cancers

Improve education and on-going training for all healthcare professionals involved in the treatment and care of patients with rare cancers

Commit to provide holistic care that addresses physical, mental health and wellbeing, social and everyday needs of patients

Address the psychosocial burden of diagnosis – 1:4 people with rare disease/cancer presenting to healthcare were told their symptoms were anxiety or psychosomatic – this not only delays diagnosis but undermines individual sense of self, requiring great resilience to challenge this inaccurate labelling.

 

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