This week we have been at our annual Researcher Workshop, a gathering of brain tumour researchers and clinicians supported by Brain Tumour Research where ideas and updates can be shared and collaborations forged. Although primarily focused on the science, there were opportunities to fundraise - the photo above was taken just before everyone walked a mile and took part in 99 Miles in November and, of course, opportunities to talk about campaigning.
The theme of the campaigning team's presentation was 'Access' and how we now have access to, and are able to talk with senior decision makers. We stressed that what is really important is that researchers talk to us so we can communicate to others the barriers they may be facing, the funding issues that may hinder progress, the regulatory obstacles that slow down patient access to new treatments and so on.
We all left the event with renewed vigour but the success of such events, and indeed the success of everything we do, can only truly be measured through the prism of patient benefit and what we have done to improve options and outcomes for brain tumour patients.
Certainly Dame Siobhain McDonagh, who we were proud to welcome as our pre-dinner speaker, was strident and challenging in her opinion on this. To paraphrase her opening - we haven't moved forward for a generation and this just isn't good enough.
For her to take six hours out of her incredibly busy schedule to join us was true testament of her resolve to drive the agenda forward. She spoke of her own loss and her journey to understand how poor progress has been, but she was clear that she supported the ambition of scientists and researchers and would do what she could to make sure they could work without impairment because they held the answers and it was for politicians to enable them to unlock the puzzle. Industry too has a part to play, she said, and the role of industry will no doubt be a part of the agenda for the next meeting of the APPG on Brain Tumours (26th November) a meeting that Dame Siobhain will chair.
On the subject of the APPG I did want to give a sincerest note of personal thanks to all of you who contacted your MPs directly requesting that they join us at the meeting on the 26th - you were as supportive as ever and it really makes a difference.
Once you have contacted your MP, they go onto our stakeholder map and we will now continue to contact them on matters pertaining to brain tumours and the APPG.
If you'd like to learn more about campaigning techniques such as this, may we suggest you join us, alongside former Health Minister Will Quince, for our campaigning webinar to be held a week after the APPG on 3rd December/? We will review the year and preview campaigning activities for 2025 - it would be great if you could join us from 18:30-19:30. Let us know via campaigning@braintumourresearch.org and we will send over a Zoom invite.
Brain Tumour Research was this week pleased to attend Cancer52’s annual Big Conversation. Cancer52 is an alliance of over 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 Cancer52’s recently appointed CEO Chris Walden ( pictured above). 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, Director of the National Healthcare Inequalities Improvement Programme at NHS England, 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 for tackling 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”.
We are grateful 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, ensuring that there’s a strong emphasis on research and clinical trials and that the brain tumour community is not left behind.
That's it for this week, but we will be back next Friday.
Wishing you all a peaceful week,
Hugh, Thomas and Evan
Published Friday 15th November 2024.