Cancer52 Annual Briefing

AMMF is an active member of Cancer52,  an alliance of those organisations representing the rarer and less common cancers, working together to address the inequalities that exist in policy, services and research, and to improve outcomes for patients with these highly challenging diseases.

Formed at the request of the then National Cancer Director, Professor Sir Mike Richards, to input into the Cancer Reform Strategy, Cancer52 has steadily grown in influence and size – membership is now 68 and rising …

For the individual small charity or organisation, Cancer52 provides unparalleled access to the ‘movers and shakers’ amongst today’s policy makers, service providers and researchers.

Why the name Cancer52? Because 52% of cancer deaths in the UK are from the less common cancers (i.e. excluding the ‘big four’: bowel, breast, lung and prostate), although in 2010 this proportion increased to 53% …

Cancer52’s Third Annual Briefing took place at the House of Lords on 8 October, hosted and chaired by Baroness Delyth Morgan of Drefelin, who is Honorary President.

Speakers were: Allyson Kaye, newly appointed Chair of Cancer52, Lord Maurice Saatchi, and Sean Duffy, National Clinical Director for Cancer.

Allyson Kaye – the new Chair of Cancer52

This was the first opportunity for the membership to meet Allyson Kaye, newly appointed Chair of Cancer52. Allyson’s predecessor, Simon Davies, had been Chair since the organisation’s inception, and worked tirelessly to establish Cancer52 as the collective and influential voice of the rarer cancers community, with doors now open in so many areas previously inaccessible to the individual rarer cancer representatives.

Allyson congratulated the organisation on having built its presence and voice under Simon’s leadership, and described Cancer52’s future as that of a pioneering organisation able to bring all parts of the less common cancer community to the table to identify priority challenges and opportunities.

Lord Maurice Saatchi – The Saatchi Bill

Since losing his wife, Josephine, two years ago to a rare type of ovarian cancer, Lord Saatchi has sought a way to bring about change and innovation to what he sees as medieval treatments for these diseases, and to the limitations on doctors caused by the present system. Hence the new Medical Innovation Bill (the Saatchi Bill), which is currently awaiting its second reading in the House of Commons.

Lord Saatchi made an impassioned and well supported speech explaining his new bill to the members, finishing with the quote, “I must face that deadly killer, or lie a craven coward in my grave.”

Cancer52’s stand on the bill is to welcome both its introduction and the wider impact that Lord Saatchi’s involvement in the debate has had in drawing attention to the rarer cancer community.

For more information on the Saatchi Bill, see the dedicated website:

and for AMMF’s reports and comments, click here

Sean Duffy – National Clinical Director for Cancer

The theme of Sean Duffy’s talk was ‘what is happening for the rarer cancers in today’s NHS’. He explained, firstly, that his role differs from that of his precedessor, Professor Sir Mike Richards, in that he is a clinician and he works alone in his new position, he doesn’t head a team. Mr Duffy listed amongst his priorities for the rarer cancers, early diagnosis, screening, reduction in emergency presentations, and survivorship. He also spoke about how he intends working towards improving GP’s access to investigations, and towards encouraging quicker referrals.

Question and Answer Session

Following the talks, Baroness Delyth Morgan then chaired a lively question and answer session.

Comments to Lord Saatchi included queries on how extra and more unusual treatments might be funded, the need for innovation within surgery as well as drug treatment,  the potential impact of the Saatchi Bill outside the UK, and finally an endorsement of his brave actions as an individual at a time of considerable personal challenge.

Questions to Sean Duffy included one from AMMF,  “People do need to go for tests promptly to achieve faster, clearer diagnoses, but this won’t happen for the rarer cancers unless awareness is raised amongst GPs. What, if anything, is being done to raise awareness at this level?”, which sparked a fair amount of debate amongst the speakers and members alike – but with little in the way of conclusion …
We intend to follow this up with Mr Duffy.


14 October 2013