Brain Tumour Awareness Month is in full swing.
You may have seen us promoting Wear A Hat Day on buses and trains, or seen our Patron Theo Burrell talking on BBC One's Morning Live this week plus there has been all of the activity on Facebook for #Shine a Light (Alfie Boe, Niles Rodgers, Suzi Quattro, Miriam Margolyes and many more) and we are gearing up for our event in Scotland next week and then at Westminster the week after.
Our iconic, bespoke top hat made for us to celebrate Wear A Hat Day by Lock Hatters - the world's oldest hat shop.
This is the final call for those of you who might wish to join us at Westminster for our manifesto launch.
This will take place at Portcullis House right in the heart of Westminster on Tuesday 19th March at 17:00 – 19:00.
There will be presentations, discussions but no refreshments actually at the event – the Thatcher Room is a committee room for business only – not for entertaining!
We would really like as many of you as possible to join us in person on the day.
Obviously we will need to manage numbers carefully so please if you are sure that you can join us, and you really would like to, please can you email me hugh@braintumourresearch.org to let me know.
We would like to invite all our political stakeholders so, if you haven't already 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: 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 we will be joined by a number of speakers including the Chair of the All-Party Parliamentary Group on Brain Tumours Derek Thomas MP and the Chief Executive of Brain Tumour Research, Dan Knowles
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>
Our 2019 manifesto 'Find a Cure'
Ahead of our event at Holyrood next week Brain Tumour Research Patron Theo Burrell and Thomas Brayford met with members of Labour’s Shadow Health team in Scotland recently.
The meeting with Paul Sweeney MSP and Carol Mochan MSP (pictured below with Thomas and Theo) focused on the impact of a brain tumour diagnosis for patients living in Scotland.
Mr Sweeney said he was “shocked by the figures” for brain tumour survival. Brain tumour survival remains low and has changed little in over a generation. Just 12.9% of those diagnosed with a brain tumour survive beyond five years compared with an average 54% across all cancers. Ms Mochan thought it important that government supports a more research active NHS, where professionals can develop imaginative solutions for devastating diseases such as brain tumours.
Theo shared her own brain tumour story. She told the MSPs about her struggles getting a diagnosis, the side-effects of the treatment and surgery, and the impact of the brain tumour diagnosis on her family. Theo also extended an invitation to this month’s Scottish Parliament Reception, taking place on Thursday 14th March 2024.
Last year, we welcomed the publication of the Scottish Government’s Cancer Strategy. In particular, the plan to focus on the cancer types that are the largest burden and have poorer survival – such as brain tumours. We also supported the vision of creating equitable access to clinical trials and ensuring that health professionals are allocated research time and are given adequate laboratory support. These commitments need actioning now.
Following the meeting Thomas said: “Today’s meeting was another step in the right direction for the brain tumour community in Scotland. It remains vital that Scottish policy makers recognise brain tumours as a clinical priority and advocate for more funding into brain tumour research. Research investment will lead to innovation and clinical trials, resulting in new knowledge, new techniques, new therapeutics and improved options for patients. We look forward to working with the Scottish Government to move the Cancer Strategy forward and improve outcomes for brain tumour patients.”
Following the recent petition hand in at Number 10, and our letter to the Prime Minister, Health Minister Andrew Stephenson has responded on his behalf. Here are some of the key points made in response to the petition that received 81,000 signatures:
"Research is crucial in the fight against cancer, and brain cancer specifically.
"As you are aware, in May 2018 the Government announced £40million for brain tumour research. Since the 2018 announcement, NIHR has committed £11.3million across 16 projects as part of its research programme spend. The Government is committed to funding high-quality brain tumour research, and we expect to spend more as new research progresses.
"There is still funding available from the original £40million announced in 2018, and if we can spend more on the best quality science we will do."
" ...the amount of NIHR funding depends on the volume and quality of scientific activity. We therefore rely on researchers to submit high-quality research proposals. The NIHR continues to welcome funding applications for research into any aspect of human health, including brain tumour research. It is worth mentioning that all applications that have been assessed as ‘fundable’ in open competition have been funded, and that this is continuing."
"With regards to your ask for ring-fenced funding, the usual practice of NIHR is not to ringfence funds for expenditure on particular topics.
"Despite this, the Government and the NIHR are taking steps to continue to increase research activity. The Government is invested in developing ways to boost research activity in this area. Brain tumours are a difficult research area with a relatively small research community.
"As examples of the progress we are making, last week the NIHR and the Medical Research Council (MRC) jointly funded a £1.5million clinical trial, APPROACH, which will trial a more targeted form of radiotherapy for patients with oligodendroglioma. Additionally, in July an NIHR-supported trial using idroxioleic acid (2-OHOA), a synthetic lipid derived from olive oil, to treat glioblastoma published promising early findings.
"We recognise that brain cancer is one of the difficult scientific challenges of our age. However, there has to be investment in research. We understand that this is not going to happen overnight, but we are determined and committed to finding a solution.
"Brain cancer research will continue to be a priority into the future, and we fully expect to be involved in this area of research for the long-term."
We thank the Health Minister for his response, for his clear interest and personal empathy for our cause and for having an open door policy (as you can see from the photograph below of the minister with Dan, our Chief Executive).
We are encouraged by his actions and ambition and look forward to continuing our conversations with him.
Brain Tumour Research this week attended an inaugural face to face meeting of the Northern Ireland Cancer Charities Coalition(see photo below).
Since power sharing was restored at Stormont, at the end of January, the province has seen a renewed sense of optimism, hope and purpose. As a cancer coalition, we want to discover our common voice and work together to achieve better outcomes for the cancer community in Northern Ireland.
Without a fully functioning Executive, the government was only able to offer short-term, temporary solutions. Now is the time to look at more durable policy and commitments, with the aim of improving outcomes for cancer patients including brain tumour patients.
Barbara Roulston, Policy and Public Affairs Manager at CRUK, spoke about the immediate aims of the Coalition which are:
- To ensure that the Northern Ireland Cancer Strategy, which was published 2 years ago, is fully implemented.
- To review the cancer workforce in Northern Ireland.
- That the role of cancer charities is understood and appreciated.
Dr Tomas Adell, Director of Elective Care and Cancer Policy - Department of Health Northern Ireland, said that cancer care needed to be transformed in Northern Ireland: “It is about identifying what we’re doing well, and do more of it. But it’s also about being honest and discovering our shortfalls.”
He added that the Department was in the late stages of producing a research strategy with publication expected next month.
After the meeting Thomas said: “The forming of the Northern Ireland Cancer Charities Coalition is the right move at this time for the cancer community in Northern Ireland and it remains vital that cancer patients are at the heart of all plans to drive policy forward.”
That is it for this week.
With us being away from the office for much of next week we won't be producing an update for next Friday however we will return on Friday 22nd with a bumper update from Westminster and Holyrood.
Wishing you all a peaceful time until then, and please do keep an eye on our social media platforms for all of our news.
Hugh and Thomas