Cancer52 and Rarer Cancers – Raising the profile

AMMF was represented by Helen Morement at Cancer52‘s event on 03 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 Dawn Green a pseudomyxoma survivor who bravely spoke of her experiences of living with pseudomyxoma peritonei1, a very rare type of cancer.

Daniel Ratchford spoke about the results of the recent national cancer patient experience survey2, 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.

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.

Whilst welcoming recognition of the need for early diagnosis and symptom recognition for rarer cancers, on behalf of all CC patients Helen asked Sean Duffy what was being done to ensure access to specialists and specialist centres for all those with the rarer cancers.  Was there the possibility of a UK wide database/network of known specialists and specialist centres to ensure there was a more level playing field across the UK? This is certainly something desperately needed for CC patients – and no doubt for all rarer cancer patients.

This request was certainly taken on board – but time will tell …

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.   AMMF is a member of Cancer52.

04 March 2015