Awareness brings support

5 min read

The more who know, the more we grow.

There is plenty to report on this week with petitions, manifestos, press and partnerships all part of our campaigning and awareness raising agenda.

You'll remember from last week how proud we are to have Theo Burrell as our patron. She shared her story with the Daily Mail this week and brought the work of Brain Tumour Research to the attention of thousands of potential new supporters, many of whom may have been affected by brain tumours themselves. As you know, we always say people can't support a cause unless they know it exists, and this Friday there are more people who know we exist than there were last Friday, and that is because of Theo.

Alongside Theo (pictured above speaking at the event) Brain Tumour Research attended this week’s Scottish Cancer Conference where the theme was 'Scotland’s New Cancer Strategy – ten years in the future, what does success look like?' 

Professor Michael Borre, from the Department of Clinical Medicine at Aarhus University, gave this year’s keynote speech. In 1999, Denmark had the highest cancer mortality rates in Europe – now, in 2023, it is Europe’s best performer. This was achieved through various measures, such as early detection programmes, advancements in treatments and comprehensive healthcare initiation. What was equally important though, was the building of a cross-party consensus on the policies and level of investment required. Professor Borre said that there was a “paradigm shift” 15 years ago, and that the cancer community got political buy-in, “ensuring that politicians treated cancer as an acute disease.”

There are echoes here of the call of the APPG on Brain Tumours inquiry report which is clear that "The Government should recognise brain tumour research as a critical priority."

Theo spoke at the conference about her own treatment and brain cancer journey. She said: “Having someone talk to you in a human way is so important. My oncologist was so straight to the point that we actually fell out in the first meeting. For me it’s so much about people being kind, understanding and listening to you.”

At Brain Tumour Research we are huge believers in the power of petitions. Please do keep on reading our updates as we are planning significant events early in 2024 to take the voices of the 81,000 of you who signed our recently closed #BrainTumourPetition to Westminster.

However this week we wanted to draw attention to a different petition. It isn't brain tumour specific but has been started by one of our loyal campaigners and addresses issues that have beset his family causing real despair. These issues won't be unique to them because they are systemic and so many of you reading this will have walked the same path and felt the same frustrations. Please read about it below, where we have reproduced the content of the petition verbatim, and then click on the green image above for your opportunity to sign and support. 

The petition calls for a review of the effectiveness of benefit assessments and experience of claimants.

Specifically the petitioners want a review on:

  • The ability of caseworkers to assess claims, including the need for assessors (who write reports for caseworkers) to have experience of the conditions they assess, and other resources available to the caseworker
  • The experience of claimants including the tone of letters. We believe that assessors need experience of the conditions they are assessing and that caseworkers should use additional resources such as a panel of experts to help understand conditions and/or medical terminology. A review must look at issues that arise from assessors not having relevant experience and the caseworkers not having sufficient time or resources to do adequate research into a condition beyond reading the assessors report. We also believe that the tone of award letters can be accusatory, interrogatory, and extremely upsetting, especially if the claimant is vulnerable

This week Cancer Research UK launched a manifesto for cancer research and care which addresses what it believes to be the priorities for this government and the next, ahead of a general election.

We asked our Director of Research, Policy and Innovation, Dr Karen Noble, for her response to the manifesto and she told us: “This is an important piece of work from Cancer Research UK which we welcome, not least for it putting cancer on the front pages and making it a talking point in the news studios. As ever there are a range of recommendations with early detection, prevention and building a national movement to beat cancer among them.

“We are pleased to see a focus on the need for research too and a recognition that the UK Government needs a new mechanism for joining up its activities on cancer research and care as the current system is ‘fragmented’.

“This was noted in the APPG on Brain Tumours inquiry report Pathway to a Cure’ as well.

"Another echo of our report is to be found in this new manifesto’s call for a ‘triple helix’ with UK Government working with industry, research funders and research charities to set out a plan for sustainable biomedical research funding, an effective clinical trials environment and incentives for industry to invest and develop new products in the UK.

"From our perspective, as welcome as this new manifesto is, Cancer Research UK works with a broad brush whereas at Brain Tumour Research we are able to focus down onto the site specific areas that need addressed on the pathway to a cure for all types of brain tumours.”

Recently Thomas has been busily placing Parliamentary questions with supportive Parliamentarians and we are pleased to report that in October and November 17 written brain tumour questions have been submitted to the Secretary of State for Health and Social Care.

We will bring the very latest news on the responses received in next week's update

On Tuesday, Thomas attended The Path to Power conference, presented by the New Statesman and Spotlight, exploring what Labour needs to do as it gears up for next year’s election.

Shadow Minister for Social Care Andrew Gwynne set out Labour’s health vision: “We need to shift health focus to our communities. We need to shift from analogue to digital, and to shift emphasis to life sciences - to benefit our society” he said.

Mr Gwynne (pictured above) continued saying that a key focus would be ensuring that there is parity of status between the NHS and social care, and that the life science sector would play an important role in transforming health and social care. He also noted that jobs in the life sciences industry are precisely the ones that the UK needs, and that they need Government support. Seyda Atadan Memis, Managing Director of Takeda UK and Ireland (Takeda is a Japanese multinational pharmaceutical company and is the largest pharmaceutical company in Asia), argued that clinical trials should be seen as a solid investment to address health inequalities.

There was a general sentiment at the event that there is no substitute for empowering frontline teams. At Brain Tumour Research, we believe that there is a need to better support those in the frontline who wish to continue with their research endeavours alongside their clinical responsibilities. That would potentially deliver a significant improvement in the future experience of patients and staff.

We are proud to launch a three-year fundraising partnership with a prestigious London Livery Company. 

Members of the Worshipful Company of Feltmakers have chosen to support Brain Tumour Research and hope to raise a significant sum to support our vital work.

Simon Wilkinson, who recently took up the prestigious role of Master Feltmaker, said: “I am delighted that we are able to support the vital work of this important charity which is the leading voice of the brain tumour community. 

“The Feltmakers Company is a thriving and relevant influencer of the modern trade and business of millinery across the UK and internationally so it is particularly fitting that we can support Brain Tumour Research, a charity which has become synonymous with the hat, and are very excited in particular to support 
Wear A Hat Day which takes place in March every year, at the end of Brain Tumour Awareness Month.” 

Our Chief Executive, Dan Knowles, who is pictured with Simon and our co-founder and now Trustee, Sue Farrington Smith MBE, at a reception at our head office to launch the partnership, said: “We are extremely honoured to be the Company’s charity of choice for the next three years and I’m excited to see what we can achieve together. Brain Tumour Research has a long and successful track record of working with milliners and having the support of the Feltmakers will be an amazing boost for the charity.” 

Since July 2022, Brain Tumour Research has partnered with sister Charity brainstrust to fund its Patient Research Involvement Movement (PRIME). We asked Adam Thomson, Patient Involvement Officer at brainstrust, to explain more about the movement and what they have been working on. We thought this piece would be of interest to many of you who read these updates so please click on the banner to read Adam's blog.

As we wrote earlier people cannot support us unless they know we exist, whether they are Daily Mail readers or felt makers, Parliamentarians being asked questions by colleagues or members of the brain tumour community signing petitions to make sure their voice is heard.

Thank you for all that you do to amplify that voice.

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