Following time spent in London last week, this week has been slightly more prosaic for some of the Brain Tumour Research Campaigning team. On Monday, we met with some of our trustees for a Policy & Stakeholder Sub-Committee meeting. On Tuesday, we agreed dates and rooms for the next two meetings of the APPG on Brain Tumours with our Chair, Dame Siobhain McDonagh – more details to follow in future updates. On Wednesday, there was a meeting with other brain tumour charities looking at ways to expedite new treatments for brain tumour patients through the current regulatory system and into the UK market. On Thursday, the complete Research and Policy team – all six of us – had a planning away day. This was a chance for us not only to look at our plans for 2025, but also explore and understand each other's personality types and working styles so we are always communicating with maximum effectiveness.
A very illuminating day.
This week we met with Clive Jones MP (above, flanked by Thomas and Evan), who played a key role in securing the Government’s commitment to a national cancer strategy.
Our discussion focused on how to strengthen medical research capacity in the UK and explored how the Government could support NHS staff to undertake research.
We look forward to collaborating with Clive to drive meaningful change for the brain tumour community.
NICE are seeking the views and experiences of people who have used NHS Talking Therapies to inform NICE guidance.
If you’ve used NHS Talking Therapies, please complete their survey about your experience of pre-assessment (also known as triage): https://nice.welcomesyourfeedback.net/NHS_Talking_Therapies.
The survey will take about 15 minutes to complete and will close at 12 midday on Friday 7th February 2025.
All responses are anonymous and they won’t ask for any personal details like your name or where you live. Any potentially identifiable information that you provide will be removed before the data is analysed. If you have any questions, please contact erin.whittingham@nice.org.uk.
This week, Thomas joined colleagues from the AMRC at a Westminster reception to discuss how research improves lives and benefits patients across the UK.
It was a chance to meet with parliamentarians, colleagues and external stakeholders, as well as hear the Health Minister, Baroness Gillian Merron, the Chair of the All Party Parliamentary Group (APPG) on Science, George Freeman MP and the Chair of the Science, Innovation and Technology Committee, Chi Onwurah MP (above) talk about the importance of research.
The Minister said that it was a real pleasure to speak at the reception, stating that “the charities present today play such a key part in the UK’s world-leading research". She added that the Government’s commitment to medical research was shown in the Autumn Budget, and that it will continue to work closely with charities with the aim of being inclusive and “understanding how different illnesses affect different people".
A great friend of the brain tumour community, George Freeman said that we should spread the word about the importance of research to all the 400 newly-elected MPs. Chi Onwurah said: “Our health and the health of our loved ones is such a key part of our lives. It’s a way in which both science and research are visible to everyone.”
Nicola Perrin, CEO of the Association of Medical Research Charities (AMRC), delivered a number of key messages. She said that, in 2023, AMRC members invested £1.7 billion in UK research and that members funded over 25,000 researcher salaries - including more than 2,500 early career researchers. She continued: “Charities bring much more than money to the sector. Charities invest in areas of unmet need, such as neglected conditions and rare diseases. Charities accelerate impact by building partnerships and attracting funding for promising research that deliver benefits to patients as soon as possible.”
There is little doubt that the UK is currently facing a health crisis. However, we shouldn’t despair as research offers the optimism we all need. As Neil Armstrong said: “Research is creating new knowledge.” And this new knowledge provides us with the solutions.
Finally, at the end of last week, Brain Tumour Research attended the Less Survivable Cancer Awareness Week reception in the Scottish Parliament.
The event was hosted by the Less Survivable Cancer Taskforce and sponsored by a member of the Cross-Party Group on Brain Tumours, Jackie Baillie MSP.
Ms Baillie said that such events provide an opportunity to shine a light on six cancers: brain, lung, liver, oesophagus, pancreas and stomach. Currently, 61% of those diagnosed with a less survivable cancer in Scotland will die within a year. Ms Baillie added: “This is about people, individuals and families affected by these devastating diseases. Significant steps have been made. Things are happening, but we can do so much more.”
Health Minister, Jenni Minto (pictured above), who attended alongside Cabinet Secretary for Health and Social Care, Neil Gray, said it was a privilege to speak at the event and that the Scottish Government’s next budget will demonstrate its commitment to health.
Lorraine Dallas, Chair of the Less Survivable Cancer Taskforce in Scotland, said: “There isn’t an easy fix to cancer. Perhaps, in the future, it won’t be an illness we dread. But we’ve got a lot of work to do to get there.”
We badly need to close the gap with survival rates for less survivable cancers, such as brain tumours. By supporting research and the workforce, innovation will bring about better outcomes.
Actually, when reviewing this week's activities it hasn't been prosaic at all – it has been packed and we wouldn't have it any other way. As campaigners, we are always calling for quicker actions from others and so it is beholden on all of us to work as quickly and effectively as we can.
We know you expect that of us.
Brain tumour patients don't have the luxury of time – their sense of urgency will always inform the way we work.
There will be another update next week and it will have a decidedly Scottish feel.
Wishing you all a peaceful time until then.
Karen, Hugh, Thomas and Evan