Opportunities to get involved

We have an apology to begin the update with this week.

In last week's update we mentioned a hand in of the #braintumourpetition at Number 10 Downing Street and invited you to join us at Westminster, but in all the excitement we neglected to say on what date this is going to happen.

As Homer Simpson would say: "Doh!"

The hand in is on Wednesday 31st January with us meeting at 12:00 for photos outside Westminster before having tea and coffee inside One Parliament Street and then heading to Downing Street to be there for 14:00.

Many of you contacted us anyway, thank you for that, and we've been in touch with details and we are pretty much at capacity for those able to physically join us however if anyone else is really keen to be there please do email hugh@braintumourresearch.org and we shall see what is possible.

Don't worry if you can't make it – there will be more campaigning events this year and shortly we will be bringing you details of an opportunity to join us at Westminster again - either in person or virtually.

Another event that we have all the details for is one we are holding at the Scottish Parliament during Brain Tumour Awareness Month, on Thursday 14th March from 13:00 to 14.15.

This is a reception to raise awareness of brain tumours and the important research happening in Scotland and across the UK. The reception will provide a chance to hear speeches from Beatrice Wishart MSP, whose daughter is living with a brain tumour, Theo Burrell, BBC Antiques Roadshow expert and Brain Tumour Research Patron, and Professor Steve Pollard from the University of Edinburgh whose team is working to better understand brain stem cells and their potential role in 'glioblastoma' - a fast-growing brain cancer.

Please could you confirm your interest in attending the event by emailing thomas.brayford@braintumourresearch.org  This is not an official invitation. The invitation will be sent separately.

Last week Brain Tumour Research met with the Minister for Health and Social Services of Wales, Eluned Morgan, along with our partners at the Wales Cancer Alliance. In her opening statement, the Minister said she was pleased to see the Alliance growing and spoke about the importance of collaboration. The Minister said that she would be focusing on giving more visibility to good practice among cancer clinicians. She also said that cancer remained one of the Government’s health priorities, and that she was actively looking to see how to increase the number of geneticists in Wales. Another question being considered was how to increase the amount of work undertaken for Life Sciences in Wales.

We would welcome an increased focus on Life Sciences in Wales. At the most recent Cross-Party Group on Cancer, in Wales, Blood Cancer UK presented. On clinical trials, they said that Wales attracts less than half of its proportionate population share of funding from UK cancer funders. In 2013, only 29% of people with cancer in Wales said they’d had a discussion about taking part in cancer research, including clinical trials, since their diagnosis. In 2021, that dropped to 20%.

At the most recent Cancer52 meeting, an alliance of over 90 organisations, united in improving the future for everyone affected by rare and less common cancers, we heard more about CRUK’s manifesto – Longer, Better, Lives.

The manifesto sets out the measures and commitments the next government can make to help prevent 20,000 cancer deaths every year by 2040. CRUK presents the document as a plan to ensure more people can live their lives free from the fear of cancer. Matt Sample, Health Policy Manager at Cancer Research UK, said: “If there’s real leadership and political will, these problems are fixable.” You can read more about CRUK’s manifesto here: Longer, better lives: A manifesto for cancer research and care | Cancer Research UK. In this, a likely General election year, Brain Tumour Research is producing a new manifesto which will be launched soon and will be a fully refreshed update of our 2019 Manifesto - 'Find a Cure'

It is APPGBT invite time again. The photo above shows the last meeting of the group held on the 14^th November where we have a roomful of Parliamentarians keen to hear about why we campaign and what they can do to support and make change happen.  The next meeting is on Tuesday 20^th February and it is vital we get as many political stakeholders to attend as possible. They will hear from a Neuropathologist about tissue storage and also hear about a clinical trial into focused ultrasound that could deliver therapeutics across the blood brain barrier more effectively. We will update on the pre-Christmas meeting with Servier regarding Vorsadenib and we will look back on the campaigning year 12 months on from the launch of the APPGBT inquiry report 'Pathway to a Cure - breaking down the barriers.'

So there will be plenty to captivate and engage MPs but we need to get them into the room (and believe me MPs aren't short of meetings that people want them to attend!).

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 (hugh@braintumourresearch.org). 

Subject; - APPG on Brain Tumours 20^th February 17:00 – 18:00 Committee Room 15  

Dear <Your MP’s name> 

The APPG on Brain Tumours will be taking place in Committee Room 15 on Tuesday 20^th February from 17:00 – 18:00 and will be chaired by Derek Thomas MP. An agenda and a briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d.

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 join that meeting. 

It would be hugely appreciated. 

….. 

<Your Name> 

<Your postal address and postcode> 

Some brain tumour questions have been asked and answered this week. Ian Byrne Labour MP for Liverpool, West Derby asked the Secretary of State for Health and Social Care, "What estimate she has made on the proportion of funding for clinical brain tumour research spent in each region of the UK in the latest period for which data is available?"

This was answered by Health Minister Andrew Stephenson whose response was that:

"The Department funds research through the National Institute for Health and Care Research (NIHR). NIHR programme spend on brain tumour research for the financial year 2022/23 was £2,028,646, distributed regionally to research organisations as set out in Table 1. It should be noted that NIHR programme funding is typically awarded to a lead researcher at a research organisation who then coordinates the delivery of the research study at a national level as required.

The NIHR also devotes significant resources to supporting patients, the public and health and care organisations across England to participate in high-quality research, thereby advancing knowledge and improving care. However, NIHR does not hold information by region on the delivery of individual research studies."

Table 1: Region of lead institution to which NIHR research programme awards were made

In more action from Liverpool this week Liverpool, Walton MP Dan Carden wrote: "To ask the Secretary of State for Health and Social Care, what steps she is taking to improve (a) diagnosis and (b) outcomes for people with glioblastomas." We will bring you the answer to that question when it is published.

Luton North MP and Officer of the APPGBT Sarah Owen ( pictured above supporting Wear A Hat Day 2023) asked the Secretary of State for Health and Social Care, how many and what proportion of clinical trials have been available for brain tumour patients each year since 2020; and whether he has made an estimate of the number of brain tumour patients that have been able  to undergo trials during this same period.

On Wednesday Andrew Stephenson ( who is clearly a fan of tables) answered that "The Department-funded National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN) supports patients, the public and health and care organisations across England to participate in high-quality research. The following table shows the number of brain tumour studies on the NIHR CRN Portfolio in each year since 2020 in England:

Source: NIHR

Note: this includes observational studies and interventional studies, including clinical trials

"We are not aware that brain tumour patients are routinely being excluded from other types of studies, however, we know that sometimes people are automatically excluded from taking part and this can be for good reasons. When designing research studies, researchers consider inclusion and exclusion criteria carefully to ensure they are not unnecessarily excluding specific groups who would benefit from the outcome of their study. However, we are aware that inclusion/exclusion criteria can disproportionally exclude individuals from specific groups for example older adults or pregnant women. The Health Research Authority (HRA) is developing guidance to improve practices in this area. The improved guidance produced by the HRA will help researchers to consider if these people and any other groups may be unnecessarily excluded and consider putting measures in place to address this."

The replies to Sarah Owen and to Ian Byrne require close examination and further questions to make sure that we are all clear on what the current situation is. That is definitely a task for Thomas and I next week.

The adult Cancer Patient Experience Survey is currently live and will close on 2nd February 2024.  The Cancer Patient Experience Survey (CPES) aims to understand people’s experiences of cancer care across England. Cancer services use the survey results to make improvements based on what really matters to people. 

Questionnaires for the survey have been sent out by post to people who are eligible to take part in the survey since November 2023. Obviously CPES want to encourage as many people as possible to complete and return the survey if they are invited to take part.  

Research carried out as part of the CPES has shown that certain demographic groups are consistently less likely to respond to the survey, including young people and some ethnic minority groups. This video is designed to encourage such groups to participate in the survey to help shape cancer services: https://youtu.be/JXH0NkptZDg 

Horizons in neuro-oncology (HIN) is a series of monthly, online talks, aimed at discussing clinically-relevant updates and new approaches in neuro-oncology.

All talks are free to attend, and are open to patients, staff, carers - everyone! However people are asked to pre-register for each meeting. Talks will be available on YouTube after each event.

HIN is hosted by labs at Imperial College.
All the information required can be found here: www.computationaloncology.net/horizons-neuro-oncology

That is it for this week.

There are quite a few requests and opportunities to engage in this week's update. We hope you find them useful and thought provoking. Your feedback and ideas are always welcome because without listening to you how can we be your voice?

Wishing you all a peaceful time until next Friday.