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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 constituencies.

John said,

“We 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.”

“In 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.”

“The 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.”

Jane Lyons, CEO of Cancer52, said,

“We 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 cancers.” 

“Specifically 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. 


The 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.

Since 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.

Armed 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.

In 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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