We are really back in the swing of it for 2024 and full of resolve and optimism for the new year.
The first thing to tell you about this week is the hand in of our #braintumourpetition, which closed on Tuesday 31st October 2023 with more than 81,000 signatures.
We are going to deliver to Downing Street your message that the government must ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
We will meet on College Green (where the TV cameras are usually set up) at 12 noon for a photo call and then we will move to Portcullis House (opposite the House of Commons) to have some tea (no doubt to warm us up) and to chat with supportive MPs before heading off to Downing Street for 2pm.
We want you to join us!
Although we can't all walk up Downing Street, we can have a gathering of 25 on College Green and at Portcullis House so if you would like to be a part of the day please email me – hugh@braintumourresearch.org – it would be great to see you.
One thing that we already know about the day is that Rishi Sunak won't actually accept our petition in person so we will convey the sentiment of the petition and maybe some photos of the day to him via email and we would of course expect a reply to that email.
A long-standing supporter of Brain Tumour Research, Beatrice Wishart, MSP for Shetland Islands, Scottish Liberal Democrats (pictured above) has submitted three brain tumour questions for the Scottish Government this week:
1) To ask the Scottish Government what recent steps it has taken to improve care for people with a brain tumour diagnosis.
2) To ask the Scottish Government how it is working to improve access to treatments for brain tumour patients.
3) To ask the Scottish Government whether it plans to create specific funding schemes for brain tumour research.
As soon as Beatrice, whose daughter had a brain tumour diagnosis, has received answers we will publish them here.
If you are a Scottish based campaigner for Brain Tumour Research we will have news of an exciting campaigning opportunity in Edinburgh in next week's update.
Meanwhile in Cardiff two questions for the Minister for Health and Social Services were posed by Mark Isherwood MS (pictured above with Thomas):
1) Will the Minister provide details on the proportionate share of funding given to Wales for brain tumour research by both cancer charities and the UK Government?
2) Will the Minister outline the number of brain tumour patients that had discussions about taking part in brain tumour research, including clinical trials, since their diagnosis, in each of the past five years?
Once again, as soon as we have the answers, we will publish them in the update. Coincidentally Thomas had a meeting with the minister, Eluned Morgan, yesterday (Thursday) afternoon – again more on that in next week's update.
On Tuesday Thomas attended the Health Select Committee meeting on 'Future Cancer'. The meeting was chaired by Steve Brine MP and attended by Paul Bristow MP, Paul Blomfield MP, Paulette Hamilton MP, James Morris MP and Rachael Maskell MP. With input from experts in brain tumours, pancreatic cancer and lung cancer this fascinating meeting can be watched here and for attending MPs there were some personal reasons behind the professional interest with Paul Bristow's father having died from a brain tumour and Paul Blomfield having been a brain tumour patient
There were recurring themes, such as the need for sufficient and fair distribution of staffing, expertise and equipment. Dr David Chang said that patients with less survivable cancers needed to be treated much faster. Dr Paul Mulholland said that we needed to ensure more clinical trials were conducted, particularly for #BrainTumours. In 2018 the Government announced that £40 million was available for brain tumour research deployment via the DHSC and its funding body the National Institute for Health and Care Research (NIHR). Dr Mulholland said it remained very difficult to access this funding.
Dr David Chang spoke about the importance of making less survivable cancers more attractive to researchers, otherwise "they're going to leave". He also floated the idea of the Government committing to a minimum spend for less survivable cancers to improve cancer outcomes.
Dr Paul Mulholland, honorary associate professor at University College London and consultant in medical oncology at University College London Hospitals, said: “What we really need is to engage the pharmaceutical industry to conduct more clinical trials in brain tumours.”
This week Brain Tumour Research supported Less Survivable Cancers Awareness Day. Taking place every year on 11th January, this awareness day aims to increase support for national action to improve survival rates for the six less survivable cancers: brain, liver, lung, oesophageal, pancreatic and stomach. These six cancers are responsible for 40% of all cancer deaths and make up a quarter of cancer cases each year in the UK. Together, they have an average five-year survival rate of just 16%.
As a registered supporter of the Less Survivable Cancers Taskforce, Brain Tumour Research attended a Westminster event on Wednesday aimed at increasing awareness of the fact that the UK needs to do more for people diagnosed with a less survivable cancer – the UK ranks 22nd out of 29 comparable countries for survival of brain cancer.
Thomas who attended said “We take every opportunity to raise the case of brain tumour patients and their loved ones with politicians, and were proud to attend this meeting to call for ring-fenced research funding for the development of innovative measures for the less survivable cancers, including brain tumours.”
The day got some great coverage in the national media including this piece in The Guardian -"UK has some of worst cancer survival rates in developed world."
In case you missed the Vorasidenib update from the meeting with Servier and some members of the All-Party Parliamentary Group on Brain Tumours (APPGBT) just before Christmas you can read about it here.
Speaking of the APPGBT we haven't listed the officers and members of the group for a while so here they all are, and we thank each and everyone for their engagement and support:
• Derek Thomas MP - Chair
• The Lord Polak CBE - Officer
• Holly Mumby-Croft MP - Officer
• Sarah Owen MP - Officer
• The Rt Hon Sir Stephen Timms MP - Member
• The Rt Hon John McDonnell MP - Member
• The Rt Hon Lord Hunt of King’s Heath - Member
• Ben Lake MP - Member
• The Rt Hon Alistair Carmichael MP - Member
• Lord Carlile of Berriew - Member
• The Rt Hon Baroness Morgan of Cotes - Member
• Helen Hayes MP - Member
• Mike Amesbury MP - Member
• Virendra Sharma MP - Member
• Caroline Ansell MP - Member
• Mark Pawsey MP - Member
• Dame Siobhain McDonagh MP - Member
• Peter Aldous MP - Member
• Greg Smith MP - Member
• Daisy Cooper MP - Member
• Iain Stewart MP - Member
• Ben Everitt MP - Member
• Nadia Whittome MP - Member
That is it for this week's update see you next Friday - and hopefully see some of you at Westminster on the 31st.