We begin this week's update with dispatches from Brighton and the Liberal Democrat conference where Thomas joined events (he's pictured below with one of the new MP intake Manuela Perteghella - Stratford Upon Avon).
Thomas reported: "It was my first visit to Liberal Democrat conference - and it certainly made an impression on me. In the recent General Election, the party won 72 seats, their highest total ever. In doing so they returned to being the third largest party in the House of Commons for the first time since 2015.
"I also met with Willie Rennie MSP (above), former leader of the Scottish Liberal Democrats. We discussed the need for more research into brain tumours, in order to understand how they arise in children and adults. Mr Rennie called for allocated money to be used to identify new therapeutic opportunities, particularly in Scotland.
"I chatted to new MPs about brain tumours and the work Brain Tumour Research does. Angus MacDonald, MP for Inverness, Skye and West Ross-shire, was shocked to hear how brain tumours are the biggest cancer killer of children and adults under 40. I also spoke to parliamentary researchers and will be contacting them in due course.
"Daisy Cooper MP, former Liberal Democrat Spokesperson for Health and Social Care and long-time friend of the All-Party Parliamentary Group on Brain Tumours, said that the top priority for the Liberal Democrats is to champion local health and care services. She highlighted the current healthcare crisis, including difficulties in accessing GPs, long waits for cancer treatments, and surgeries. Cooper said that major reforms and increased funding for the NHS and social care services were necessary, arguing that these services are essential for individual freedom and a liberal society. Finally, she called on the Labour Party, and specifically the Health Secretary, to adopt bold reforms for the NHS."
Next up is the Labour Party conference and Thomas will bring you an update from Liverpool next week.
We have a new colleague! Evan Smyth has joined us as our Policy and Public Affairs Officer. He told us: "After studying Politics at University, I was shocked to hear about the lack of funding given to the research of brain tumours and became determined to get involved. I’ll be working with Hugh and Thomas across Westminster and the devolved bodies. I'm looking forward to pushing for greater research funding and broader governmental support for the research of brain tumours." Welcome aboard Evan.
On Wednesday, Thomas and Evan joined the Cancer 52 Coalition meeting. This coalition is a network of over 100 organisations that advocate for patients with rare and less common cancers. The meeting heard from Kate Blackstone, Charity Engagement Lead at the National Institute for Health and Care Research (NIHR). The meeting discussed the inequalities and disparities with access to, and participation in, clinical trials, as well as trial availability. The NIHR demonstrated an openness to collaboration. We welcome this and look forward to working together to further the interests of brain tumour patients.
Following on from the registering of the APPG on Brain Tumours our APPG webpage has been updated with the meeting minutes and below is a full list of our members. We can add to this number so please do try and engage your MP with the group to help amplify our voice.
Dame Siobhain McDonagh MP - Chair, Labour
Sarah Owen MP - Officer, Labour
Mims Davies MP - Officer, Conservative
The Lord Polak CBE - Officer, Conservative
The Rt Hon Sir Stephen Timms MP - Member, Labour
The Rt Hon John McDonnell MP - Member, Labour
Ben Lake MP - Member, Pliad Cymru
Monica Harding MP - Member, Liberal Democrat
Greg Smith MP - Member, Conservative
Nadia Whittome MP - Member, Labour
Rebecca Harris MP - Member, Conservative
Daisy Cooper MP - Member, Liberal Democrat
The Rt Hon Alistair Carmichael MP - Member, Liberal Democrat
Helen Hayes MP - Member, Labour
James Cartlidge MP - Member, Conservative
Mike Amesbury MP - Member, Labour
Lord Carlile of Berriew - Member
The Rt Hon Baroness Morgan of Cotes - Member
Tom Rutland MP - Member, Labour
Helena Dollimore MP - Member, Labour
Dierdre Costigan MP - Member, Labour
Bill Esterson MP - Member, Labour
As reported in last week's update the UK Government published a report into the state of the National Health Service (NHS) in England, carried out by Lord Darzi. The Darzi Report found that the NHS currently sits in a critical state, with urgent and comprehensive reform needed to ensure that the NHS is able to respond to the needs of the nation.
The report highlighted how cancer care in the UK has fallen behind our European neighbours, with only 65.8% of patients being treated on time. The report also stated that only 60% of genomic tests (genetic tests used to diagnose cancers) are being delivered to schedule, and that only 5% of eligible patients with brain cancer have access to whole genome sequencing, which is vital for treatment selection.
During Childhood Cancer Awareness Month, we welcome the emphasis that the report placed on improving care services for children. On average, over 420 children in the UK are diagnosed with a brain tumour every year, accounting for more than a quarter of all childhood cancers in Great Britain.
The report found that waiting list sizes and the duration of waits have grown more rapidly for children than for adults in recent years. Moreover, paediatric care must be a central theme in the upcoming 10-year plan on NHS reform.
Dr Karen Noble, Director of Research, Policy and Innovation at Brain Tumour Research states: “This report is a frank and honest assessment about the state of the NHS in England as it stands today. Only by placing cancer and paediatric care at the centre of the 10-year plan, will the Government be able to improve tangible outcomes for brain tumour patients and their families.
"This is a solid foundation for change but we need to see collaboration from the Government, to develop a roadmap for the full national deployment of the £40 million already committed to the research of brain tumours back in 2018.”
We are ready to work with the Government in order to ensure that the critical issues identified by Lord Darzi are addressed and tangible improvements for brain tumour patients are achieved.
Link to the full report can be found here.
At this week's Less Survivable Cancer Taskforce Wales meeting, Thomas presented on our work in Wales, including an overview of the situation, challenges and opportunities.
On Thursday evening at a launch event attended by Dr Noble and our CEO Dan Knowles, and held at Francis Crick Institute, London, LifeArc’s research strategy for childhood cancer was announced. LifeArc is a British life science medical research charity. It was established in 2000 as MRC Technology to translate the work of UK Medical Research Council research scientists. This new research strategy will focus on developing new treatments, improving clinical trials and supporting clinicians to make better decisions.
One initiative already launched and which we heard more about at the event, is C-Further, an international consortium of researchers, clinicians, scientists in drug discovery and development, partners and impact investors with a shared commitment to creating new cancer therapeutics for children and young people, founded jointly by LifeArc and Cancer Research Horizons. £28m has already been set aside to support this endeavour.
We look forward to learning more about other approaches that LifeArc will take to deliver on these objectives and exploring how we and the research community can help support.
A fortnight ago we reported on the welcome news that 23 companies will benefit from a share of £12 million from the Innovate UK Cancer Therapeutics programme. The really good news is that researchers studying paediatric brain tumours at our Centre of Excellence at The Institute of Cancer Research (ICR) have received a £500,000 boost from this funding.
Professor Chris Jones, who leads the team at the ICR, said: “This grant, which we are sharing with biotechnology company Revolver Therapeutics Ltd, will support identifying tiny proteins, known as peptides, that can enter cells to prevent specific cancer-causing proteins from binding to DNA within a child’s brain tumour. This phenomenon is strongly associated with high-grade childhood brain and spinal tumours and it is hoped that by interfering with these DNA-binding proteins, these cancers affecting children can be treated.”
A positive end story to a postive week
We will be back next Friday.
Wishing you all a peaceful time until then.
Hugh, Thomas & Evan