At Brain Tumour Research the start of a new year always includes a day when the whole team gets together to share their objectives, and aspirations for the forthcoming year. On Wednesday, my colleagues from the Fundraising, Marketing and Communications and Finance and Operations teams spoke of their commitment to getting to their targets so we can grow and fund even more research. Of course, our team – Research, Policy and Innovation - played our part and we gave a 30-minute presentation, the details of which I hope you’ll find interesting.
It is really important that we know how we fit into Brain Tumour Research’s mission which is “Focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK”
Research and campaigning are clearly at the core of what the charity does and it is the absolute core of what our team is dedicated too.
How, then do our endeavours fit in with the wider strategy as set out in our Find A Cure - Our Manifesto?
In the manifesto we describe how, as part of granting sustainable funds to UK research to create a network, we need to:
- Grow capacity
- Build Infrastructure
- Accelerate treatments
As campaigners we also want to influence significant growth in national investment and this is all about raising awareness because as you all know – ‘People can’t support a cause unless they know it exists”
Our Director of Research, Policy and Innovation Dr Karen Noble explained to the team on Wednesday her role in the designation of our new research centre (the location of which will be announced in March) and the processes around reviewing the centres that we are currently partnering with. She further shared about our exciting new partnerships with external stakeholders like brainstrust and the Tessa Jowell Brain Cancer Mission, namely PRIME and BTR-NTA . NTA is absolutely focused on accelerating new treatments. Dr Noble was very clear that her objective is, and remains, supporting the translation of our funded discovery research, and the work of others, into clinical trials.
Nicola Gale, our Research Communications Officer, shared with colleagues how her data analysis gives us the evidential underpinning for our campaigning messages. Our statistics are so powerful and really help to engage political stakeholders who have no previous personal knowledge of our disease area and why we campaign. Nicola’s aim is to give us, as campaigners, our ammunition.
She also ‘shares the science’ by writing plain language summaries of the complex scientific papers that our centres proudly produce. These can then be shared with a wider audience of supporters, stakeholders, the media and sector wide to demonstrate the impact of the research we are funding. Demonstrating impact is a way to generate future funding for new research and is the way we can work to generate the funding momentum that our disease area has missed out on and why we look to what has happened in areas like breast cancer and leukaemia, where greater research funding has delivered improved statistics, and say it is now time for brain tumour research to catch up.
My colleague Thomas Brayford, our Policy and Public Affairs Officer, shared his plans to influence at Westminster and in the devolved nations. Politically it is an interesting time with a General Election in the offing and Thomas is determined that, whatever the future holds politically, the cause of brain tumour patients is never far from the minds of key policy shapers. Thomas is also the face of Brain Tumour Research on collaborative groups such as One Cancer Voice and the Neurological Alliance as well as feeding in from a brain tumour research perspective to various Government consultations, policy steering groups and public affairs collectives.
When it was my turn to explain how the first half of 2023 is shaping up for me then, of course, the All-Party Parliamentary Group on Brain Tumours and the report for the APPGBT inquiry ‘Pathway to a Cure – breaking down the barriers’ took centre stage. The report is a big but vital piece of work and I’m really looking forward to sharing the report recommendations with you and with the people who we will be asking to support the report and the recommendations. The report will be a milestone to become the beginning point of future conversations because it will be a record of where we are now and what we need to be doing to reach where are all so desperate to get to which is our vision; to find a cure for all types of brain tumours .
Targets, objectives, KPI’s are all really important as we strive to be the very best we can be but our culture is equally vital and something I am truly proud of. If you like to find out more about the culture that runs through Brain Tumour Research please have a look at this blog I wrote in 2021: The culture at Brain Tumour Research.
Last week, we submitted our response to the Cross-Party Inquiry on Cancer and Inequalities.
In November 2022, The Cross-Party Group on Cancer in Wales launched an inquiry to:
- Understand the impact that inequalities, and particularly deprivation, have on patient experience, access to cancer services, cancer incidence and cancer outcomes in Wales.
- Provide recommendations to the Welsh Government, NHS Wales, and other public bodies to tackle inequalities across the cancer pathway, and in particular the impact of poverty and deprivation on patient access and experience.
In 2018, Brain Tumour Research published a report - Exposing the financial impact- which looked at the true cost of a brain tumour diagnosis. We found that being diagnosed with a brain tumour, as one supporter said, “was not really the worst thing”. Brain tumours affect patients’ ability to work, to get around and to access drugs. Further costs are incurred due to extra home help and childcare. The situation has only worsened due to the impact of the current cost-of-living crisis.
The questions in the Inquiry focused on the challenges facing specific groups or communities in Wales with regards to risk factors for cancers, the barriers to accessing services and the impact of COVID-19. Moreover, it gave respondents the opportunity to share with the Group the changes they'd like to see. Many thanks to brainstrust, who helped recruit respondents.
The response we submitted summarised the experiences of those with lived experience of brain tumours in Wales. The recommendations made to the Cross-Party Group were a combination of previous asks e.g., urging an increase in the national investment for research into brain tumours to £30-35 million per year and from the responses we collected e.g., that there needs to be better specialist mental and emotional health services available to brain tumour patients in Wales. Moreover, it needs to be closer to home. You can read more about the Inquiry and our response here.
This week, we met with the Minister for Health and Social Services in the Welsh Government, Eluned Morgan, along with our colleagues at the Wales Cancer Alliance. The Minister said that last year had been a “particularly difficult” year for cancer services, with an increased volume of patients. Early this year, the Welsh Government will make major announcements on the workforce, facilities and services. Ms. Morgan emphasised the crucial role Rapid Diagnosis Clinics will play in helping to diagnose patients quicker, as part of nationwide work to cut cancer waiting times. Cancer care and treatment, she said, were top priorities within the Welsh Government’s Six Goals for Urgent and Emergency Care.
Today (Friday) Thomas attended the Quarterly Cancer Charity Forum. David Fitzgerald, Programme Director, NHS Cancer Programme, updated attendees on the latest cancer figures. He said that around 265,000 cancer referrals were seen in November, and that treatment levels were at their highest levels since records began. Also, there has been a conscious effort to address the 62-day waiting time backlog.
Professor Peter Johnson, National Clinical Director for Cancer, briefly talked about the deal the UK Government has recently signed with BioNTech to enrol up to 10,000 patients in clinical trials by the end of 2030 for personalised cancer therapies. The agreement means that both parties will utilise the UK's clinical trial network, genomics and health data assets, and the aim is to enrol the first cancer patient in the second half of 2023. Johnson said that this therapy will be useful for those that have had a cancer removed and there’s a chance of it returning. According to the National Clinical Director, “The UK was the preferred location for this because of its vast experience in sequencing.”
This week Brain Tumour Research marked Less Survivable Cancers Awareness Day.
The awareness day was launched in 2022 by the Less Survivable Cancers Taskforce (LSCT) to raise the profile of the six less survivable common cancers – brain, lung, pancreatic, oesophageal and stomach – to raise awareness of symptoms and to highlight the critical importance of early diagnosis in improving survival.
Brain Tumour Research joined eight other cancer charity and research organisation invitees, and signed up as registered supporters of the LSCT in July 2020.
Less survivable cancers are difficult to diagnose as they often have vague or non-specific symptoms. Data released by the LSCT in 2021 showed that awareness of the symptoms of the deadliest cancers is as low as 4% in the UK.
What’s more, people diagnosed with less survivable cancers have a shockingly low life expectancy. The chance of someone surviving for five years after being diagnosed with one of these cancers is only 16%.
The LSCT urges everyone to be aware of the symptoms of these deadly cancers and to seek medical help at the earliest opportunity if they recognise any of the signs. For more information about brain tumour symptoms, click here.
This week I had the great pleasure of meeting the CEO of Tree of Hope. Tree of Hope is a crowdfunding charity that helps children and young people with a disability or illness by supporting their families to raise the money they need to pay for specialist care that is not freely available through the UK healthcare system. Children with healthcare needs can often benefit from a range of therapies and treatments, not necessarily available via state provision. Tree of Hope supports families to fundraise towards these costs.
If being made aware of Tree of Hope is helpful to just one person, one parent, one child reading this blog then that would be a wonderful thing.
Finally, this week the countdown to my favourite fund and awareness raising day of the year is underway. Look super for science – Wear A Hat Day is back!