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John Baron MP hosts and addresses ‘Cancer52’ Parliamentary reception. MP: NHS England’s announcement will improve earlier diagnosis. Susan Fitz-Gibbon of Chordoma UK presents a patients perspective.

Yesterday (Wednesday 10th December 2014)
the Chairman of the All-Party Parliamentary Group on Cancer (APPGC), John Baron
MP, hosted and addressed a Parliamentary reception organised by ‘Cancer52’, a
coalition of more than 80 charities representing rare and less common cancers.
The purpose of the reception was to raise the profile of these cancers which,
despite the name, taken together account for half of all UK cancer deaths – as
many as the ‘big four’ (breast, prostate, lung and bowel cancer). MPs were also
able to collect information about rare and less common cancers in their


have a big problem which, together, we need to address. Despite rare and less
common cancers accounting for around half of all cancers, patients suffer from
delayed diagnosis because symptoms are less well-known, from poor patient
experience, and from lower levels of investment in research resulting in fewer
advances in treatment.”

particular, the NHS must improve its performance on earlier diagnosis in this
area, as the earlier a cancer is detected, the more successfully it can be
treated – late diagnosis makes for poor survival rates.”

APPGC and the cancer community were very pleased with the response to our
campaign from the Chief Executive of NHS England at this week’s ‘Britain
Against Cancer’ conference that one-year cancer survival rates, broken down by
CCG, will be included in the top tier of NHS accountability from April 2015.
This new focus will put pressure on underperforming CCGs to raise their game
and improve earlier diagnosis – truly cancer’s ‘magic key’. This will benefit
rare and less common cancers.”

Lyons, CEO of Cancer52, said,

wholeheartedly welcome the addition of one-year survival rates to the CCG
reporting.  But with latest data in England showing that rare and less
common cancers accounted for 54% of all deaths from cancer in 2011[i] , more than the 'big four' together,
it is clear that more we need more focus and investment in these

the ‘Britain Against Cancer’ conference earlier this week saw both main
political parties and NHS England committing to refreshed cancer strategies and
we will be seeking pledges from all to a sizable presence for rare and less
common cancers at the table when the strategies are being developed.”


Photos shows (left to right) ChordomaUK  co-founder Gerald Fitz-Gibbon, Jane Lyons CEO Cancer52, Susan Fitz-Gibbon ChordomaUK co-founder, John Baron MP. 


All-Party Parliamentary Group on Cancer is the voice of the cancer community in
Parliament, raising cancer at every opportunity, including on the Floor of the
House and in meetings with Ministers and others.

its major report in 2009, the APPGC has focused on promoting earlier diagnosis
– cancer’s ‘magic key’ – since late diagnosis makes for poor survival rates.
The report highlighted that whilst the NHS is the equal of its international
peers at treating cancer, it performs badly at detecting it in the first place.
Figures show we could save 5,000 extra lives each year were we to match
international averages when it comes to one-year survival.

with this information, the APPGC and others successfully campaigned for the
inclusion of one- and five-year survival rate indicators in the NHS Outcomes
Framework and the Clinical Commissioning Group Outcomes Indicator Set. The
first raft of figures were released in December 2013, enabling for the first
time politicians, NHS England and the wider cancer community to hold
accountable underperforming CCGs, which will have to develop initiatives to
raise their game. These could include better uptake of screening, better
diagnostics at Primary Care, better GP training and referral programmes, and
better awareness campaigns.

order to compensate for the smaller population sizes of CCGs relative to the
PCTs they replaced, the APPGC also campaigned for the inclusion of two proxy
indicators – the stage of cancer at diagnosis, and the number of cancers
diagnosed as an emergency – to compliment the one- and five-year figures. These
were accepted for inclusion into the accountability frameworks, the staging
data is already available and figures for emergency diagnosis should be
available from January 2015.

[i] Source
Data Report from Cancer52 on National Cancer Intelligence Network data on rare
and less common cancers, published June 2014

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