Pseudomyxoma Survivor was represented by myself and Kirsten at Cancer52‘s event on 3rd March 2015, the aim of which was to raise the profile of the rare and less common cancers at a key time in cancer strategy development …
Speakers included Daniel Ratchford, Chief Executive of Quality Health, Sean Duffy, National Clinical Director for Cancer and me. I presented about the challenges faced by rare cancer patients, especially those facing Pseudomyxoma Peritonei.
Chief Executive, Quality Health
Daniel Ratchford spoke about the results of the recent national cancer patient experience survey, highlighting that the rarer cancer patient’s experience is markedly worse in many categories than that of those patients with more common cancers, especially when it came to being allocated a named clinical support nurse (CNS), and in receiving written information.
National Clinical Director for Cancer for NHS England
with Cancer52 Chair, Clara Mackay
Sean Duffy spoke about future plans for cancer services for the rare and less common cancers, and highlighted areas where he felt the UK falls short compared to those countries with the ‘best’ outcomes – these include increased access to and use of tests, and easier access to specialist centres. He mentioned work was being carried out into working towards earlier diagnosis, and ensuring more recognition of the vague and non specific symptoms of many of the rarer cancers.
To read the results of Quality Health’s National Cancer Patient Experience survey, click here:
Cancer52 is an alliance of 80 organisations representing the rare and less common cancers and works to address the inequalities in representation and funding across all areas, including policy, services and research, and to improve outcomes for patients with these highly challenging diseases. Pseudomyxoma Survivor is a member of Cancer52.