Today marks the beginning of Brain Tumour Awareness Month

4 min read

This morning many of you joined our team for a minute of silence and reflection and this simple act of remembrance was mirrored at our Centres of Excellence - please log onto our social media platforms to read more about this and see poignant photographs taken this morning.

The minute's silence in the office set the tone for the month to come with many memories but also thoughts of moving forward and campaigning for change.

Central to our call for change this month will be our 2024 manifesto.

Our 2019 manifesto 'Find a Cure'

A fortnight ago we asked if you would like to join us at Westminster on Tuesday 19th March at an event to mark the publishing of the manifesto and many of you have got in touch about this.

We look forward to seeing you on the day.

Now is the time to ask your MPs to join us.

Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me ( 

Subject: Brain Tumour Research Manifesto Launch Tuesday 19th March 17:00 - 19:00 Thatcher Room PCH  

Dear <Your MP’s name> 

On Tuesday 19th March from 17:00 - 19:00 in the Thatcher Room of Portcullis House the charity Brain Tumour Research will be launching their manifesto for 2024. Printed copies of the manifesto will be available and as well as refreshments being served we will be joined by a number speakers including the Chair of the All Party Parliamentary Group on Brain Tumours Derek Thomas.

The event is sponsored by Guy Opperman.

As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and attend this manifesto launch for at least some of the evening's proceedings.. 

It would be hugely appreciated. 
<Your Name> 
<Your postal address and postcode> 

At 7:30pm this evening (Friday 1st March), please help #ShineALight for all those affected by brain tumours by lighting a candle and sharing a photo on social media to raise vital awareness.If you follow us on Facebook, X (Twitter), LinkedIn or Instagram keep an eye out as you'll see that by supporting #ShineALight you'll be in good company.

In the main chamber at Westminster on Wednesday Dame Siobhain McDonagh MP presented a 10 Minute Rule Bill, about brain tumours. She called for:

  • Targets to be set for the number of glioblastoma patients who take part in clinical trials each year
  • Required training for medical oncologists to include training related to brain cancers and to include medical oncologists on multidisciplinary teams
  • Provision of any drug that has been licensed for use on tumours to be trialled on people with brain tumours and for manufacturers of drugs licensed to treat tumours to be required to make those drugs available in specified circumstances for clinical trials relating to brain tumours.
  • Transparency around the processes for funding drugs intended for the treatment of glioblastoma
  • A review of the allocation of existing funding for brain tumour research by NIHR
  • Provision for the direct referral of patients by optometrists to A&E to diagnose brain tumours

The bill was signed by several friends of the APPGBT including Will Quince, George Freeman, Daisy Cooper Helen Hayes and Sarah Owen as well as Tracey Crouch, Steve Brine, Paul Blomfield, Dame Meg Hillier, and Wes Streeting.

Siobhain made several points around the responsibility of Government to encourage or legislate to ensure pharmaceutical companies are bought into the process of finding a cure for brain tumours. She made a particularly interesting point calling for the MHRA (Medicines and Healthcare products Regulatory Agency) to allow companies to submit data on trials on brain tumours separately to ensure that results do not adversely affect the application.

At Brain Tumour Research we have met with Siobhain and are appreciative of her support of the APPGBT and her wish to work collaboratively with it where possible.

Ten minute rule bills have little legislative power so it is rare for them to pass into legislation, however they are a worthwhile opportunity to give momentum to an issue and are a useful mechanism to enable MPs to generate debate on this. These bills test the opinion of the House on a subject and may be used by the Government when considering legislation, particularly if it has widespread interest across the House, which this bill does.
The process for the bill now is that it has been added to the register of parliamentary business and will be scheduled for debate along with the other private members bills, but at a lower priority. The second reading of the bill will take place on April 19th and will be an opportunity for MPs to debate the general principles and themes. Siobhain will open the second reading debate and the official Opposition spokesperson will respond. At the end of the debate the Commons will decide whether the bill should proceed to the next stage. This is usually where the Government opposes the bill - although this seems unlikely in this case
If it passes its second reading, the bill will then go to committee stage where each clause and any amendments to the bill are debated and it is at this point that barriers may be encountered.

Professor Kathreena Kurian is a consultant neuropathologist and Professor of Neuropathology and Head of the University of Bristol Brain Tumour Research Centre. She is also very supportive of the APPGBT and presented on Neuropathology and Whole Genome Sequencing at the APPGBT meeting on February 20th.

On  Wednesday 17th April 2024 at 6.15 PM (followed by drinks reception from 7:15pm) she is delivering a lecture entitled:

'Faith, hope and love: the pursuit of breakthroughs in brain tumour research'   
The location is Priory Road Lecture Theatre, Priory Road Complex, Priory Road, Bristol, BS8 1TU.

Professor Kurian says of the lecture:  

"The prospects for brain tumour sufferers have not improved over the past 20 years and we really need to do better for our patients. I will discuss a personal journey on how I have navigated through the challenges of researching in this area and also give my reflections on how to tackle lack of diversity in academia."

We admire Professor Kurian very much and highly recommend attending this lecture if you are able - booking details are to be found in the link below:

Katie MacLeod Peters is a trainee clinical psychologist at Midlands Partnership NHS Foundation Trust and Staffs University. 

Her Doctorate in Clinical Psychology thesis study is on living well with a primary malignant brain tumour (PMBT). 

 If you know, or if you are an adult living with a primary malignant brain tumour you can support Katie's work by completing this 15-minute survey which is about wellbeing whilst living with PMBT and hopes to inform how people with PMBT can be supported psychologically.

This week at Westminster Sir Charles Walker MP has asked the Secretary of State for Health and Social Care: "What assessment she has made of the adequacy of the level of NHS funding for brain tumour research compared to research into other cancers; and if she will provide the quantum of NHS research funding into brain tumours for each of the last five financial years". We will report back when an answer is received.

Baroness Randerson received an answer to her question asking: "His Majesty's Government what assessment they have made of the recommendations of the APPG Report Brain Tumours–Pathway to a Cure, and in particular recommendation 6 with reference to paediatric cancer diffuse intrinsic pontine glioma."

Health Minister Lord Markham informed her that: "The Department welcomed the All-Party Parliamentary Group report and will continue to work through its recommendations with the Department of Science, Innovation and Technology, UK Research and Innovation, the Medical Research Council, and the National Institute for Health and Care Research (NIHR).

"With regards to recommendation six, the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours and paediatric diffuse intrinsic pontine glioma. The usual practice of the NIHR is not to ring-fence funds for specific disease areas, as research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

"We rely on researchers to submit high-quality research proposals. Given the relatively small brain tumour clinical research community, we have been taking action to grow the field. The NIHR is working closely with the Tessa Jowell Brain Cancer Mission in hosting customised workshops for researchers, and training for clinicians, to grow capacity for brain cancer research, attract new researchers, develop the community, and support researchers to submit high-quality research funding proposals.

"The NIHR is committed to the involvement, engagement and participation of children and young people in research, supporting researchers and funders, as well as empowering children and young people to lead their own journey with research.

"The NIHR, together with the United Kingdom health departments, the Little Princess Trust and Cancer Research UK, jointly fund Experimental Cancer Medicine Centres (ECMCs) to support the most promising innovations into the cancer medicines of tomorrow. For 2023 to 2028, the NIHR is providing £21.6 million in funding for the ECMCs in England, the ECMC Paediatric Network, and the Network Programme Office. Additionally, the NIHR Clinical Research Network cancer portfolio has a dedicated children and young people’s cancer subspecialty, which has a subspecialty lead who promotes and supports research within their local National Health Service trusts.

"The Department has also now set up the Children and Young People Cancer Taskforce to progress our mission to deliver world-leading cancer services. This dedicated work focusing on cancers affecting children and young people will explore research and innovation, which may include targeting research funding, reviewing children’s access to clinical trials, gaining greater access to data, and informing future therapies and treatments."

That is it for this week - a special week where the update has coincided with the beginning of Brain Tumour Awareness Month.

As we always say people cannot support a cause unless they know it exists and so in our awareness month we will be making every effort possible to get as many people supporting Brain Tumour Research, our vison and our mission as we can.

Thank you all for your support in doing this.

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