We’re part of Cancer52’s Big Conversation

3 min read

Brain Tumour Research was this week pleased to attend Cancer52’s annual Big Conversation. Cancer52 is an alliance of more than 100 organisations, united in improving the future for everyone affected by rare and less common cancers.

The theme of this year’s Big Conversation was how we can work together to reduce health inequalities, and there were several interesting panel discussions on this subject.

The opening words were given by Chris Walden (top left), who was recently appointed as CEO of Cancer52. Chris welcomed the recent announcement from the Government that there will be a new, dedicated cancer strategy, adding that “every person with a rare, less common cancer deserves a timely diagnosis and high-quality treatment”.

 

Professor Bola Owolabi (above) returned to deliver yet another powerful keynote speech. She thanked Cancer52, and the charities it represents, for shifting the dial – noting that there is a dedicated workstream in the NHS 10 Year Plan to tackle health inequalities. 

Addressing the charities in the room, she said: “Being fatigued is a luxury. It is beholden on us all to embrace our agency, and to use our influence to maximum effect.”

Professor Owolabi continued: “We need to be able to craft the narrative and use the data to influence those who hold the purse strings.” And to make the desired progress, the focus for rare and less common cancers must be on “the entire treatment pipeline”.

Jen Harrison, Health Inequalities Lead at Cancer52, gave an overview of Cancer52’s patient survey. Cancer52 surveyed 1,371 people who had been diagnosed with a rare and less common cancer, through stakeholder interviews, member feedback and desk-based research. The findings show that rare and less common cancers face systematic, unfair and avoidable differences compared to more common cancers. From the respondents:

  • 34% said they had visited their GP three or more times before being referred for a diagnosis
  • 63% who were diagnosed in an emergency setting had already visited their GP with symptoms
  • 75% said they had accessed the support of a clinical nurse specialist (CNS) during their treatment
  • 82% said they were not sufficiently informed about clinical trials

Jen said that the challenges are “often compounded by stigma and misconceptions” and that the “impact is felt beyond health, including work, study, financial circumstances and family life”.

Our Policy and Public Affairs Manager, Thomas Brayford, said: “Thanks to Cancer52 for organising such a successful event. Such events allow Brain Tumour Research, and other brain tumour charities, to come together with coalition partners to create a unified force for change to bridge gaps in health for all communities. We look forward to responding to the NHS 10 Year Plan consultation, assuring that there’s a strong emphasis on research and clinical trials, ensuring that the brain tumour community is not left behind.”

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Published Thursday 14th November 2024.

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