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Brain tumours kill more children and adults under the age of 40 than any other cancer

Early diagnosis, the Welsh Cancer Alliance and two videos

by Hugh Adams

As was mentioned in last week’s blog, Tuesday was the first Less Survivable Cancers Awareness Day, designed to raise the profile of the six less survivable cancers (brain, liver, lung, oesophageal, pancreatic and stomach) and to highlight the critical importance of early diagnosis in improving survival.

We are proud to be a supporter of the Less Survivable Cancers Taskforce (LSCT) and at Brain Tumour Research we agree that we need action to improve survival rates of the less survivable cancers. Our mission to do this is focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.

The theme of early diagnosis was a recurring one this week as was recognition of the need for symptom awareness.

As part of the Welsh Cancer Alliance we joined a meeting with Eluned Morgan, the Minister for Health and Social Services on Wednesday. She spoke of cancer being the number one health priority whilst at the same time mentioning the difficulty of a health system under unprecedented pressure. The paradox is, in the short term and in the eye of the current storm, wanting people to stay away from hospitals, if at all possible, to avoid them becoming swamped, whilst also wanting people to get checked out as soon as possible when experiencing the early onset of possible cancer symptoms. For patients not to do so could present greater problems in the future.

The NHS in England has consistently stated that they are ‘open’ during the pandemic and in meetings we have been at they have asked cancer charities such as Brain Tumour Research to share this messaging with their communities.

This sharing of messaging was a key theme of a Cancer52 meeting we joined this week. NHS England gave a presentation on ‘Collaborative Campaigns Partnerships’. The aim was to bring key stakeholders, such as those from the third sector, into the narrative of current and future NHS campaigns. The most obvious of these being the Help Us, Help You Campaign promoting patient symptom awareness and the importance of accessing NHS services as quickly as possible. What this means is charities being a portal for NHS messaging to our communities.

This makes sense, we are in a privileged position, we are a trusted source of information, a position we take very seriously. We support the NHS and are keen to stand with them and, as with the LSCT, we are happy to play a role in the dissemination of key messages.

However, this raises once again the question of the value of early diagnosis for brain tumour patients and once again we will restate the point that whilst early diagnosis can make a real difference for those with a brain tumour that is easily accessible to surgical intervention and is of a shape and type suitable for complete resection this isn’t always the case.  Any brain tumour diagnosis, at any stage must be supported by better, new clinical interventions, and choices of these, if we are to improve the woeful brain tumour survival statistics. This will only come through increased and sustainable funding of the discovery science of the type we fund at our research centres.

Without new discoveries, the outlook for patients with brain tumours is very bleak. Whilst high risk, where successful, discovery science can lead to significant progress, new ways of thinking and new treatment strategies. Discovery science is very much at the heart of Brain Tumour Research’s approach – supporting its centres for the long-term to think big and take risks. It is this investment in discovery science that can, in time, deliver huge improvements in patient survival.

When it comes to symptom recognition far too many brain tumour patients are being diagnosed at A & E having experienced the trauma of a seizure that has come completely out of the blue. What would be the warning signs though? As could be expected from such a complex disease the symptoms vary both in type and severity particularly prior to diagnosis.  The Help Us, Help You campaign, as vital as it is, focuses on cancers with a proven pathway from earliest symptoms, a persistent cough, unexpected blood loss and so on, to diagnosis and treatment. That just isn’t the case for brain tumours so currently they are not part of a symptom awareness campaign from the NHS.

Stories like Shay Emerton’s aren’t unusual. As Shay told us “The night before everything happened, I’d been to the pub with Nick (his best friend) and remember saying to him that I was in the best shape of my life, the healthiest I’d ever been.” 

Shay’s story is on our website – please read it, he is quite a guy!

That is why we are a research funding and campaigning charity because the change will come from research and that research needs Government funding, but we will continue to keep you informed of all matters of interest to our community.

As well as informing you, we want you to inform us too.

As part of the APPGBT inquiry Brain Tumour Research will be undertaking a patient survey to really understand what is happening, where it is happening, who to and most importantly what you think and how things can be improved.

The APPGBT inquiry will be using Parliamentary questions, from MPs to Ministers, as a means of gathering vital information to build a comprehensive picture of site-specific cancer research funding. If you would like to put forward a brain tumour research related question to your MP for them to ask at Westminster, please do email hugh@braintumourresearch.org and we will build a list of campaigners willing to take this proactive step.

Finally, this week links to two video clips. Both are highly emotional, poignant, and moving but feature very different stories and are of differing lengths and pace. The first is a news item about the tragically curtailed life of Albie Bayliss Watts, this laughing, lovely little boy was taken away as much by the cures administered to him as the cancer he had been diagnosed with. The second is a short student documentary about the extraordinary Amani Liaquat and is entitled Amani's Story: Fighting The Injustice of Brain Cancer. It has been my privilege to meet and appear on the media with Amani and members of her family. Amani is very active on social media where her followers are completely engaged and inspired by her. You can find her on Twitter at @_axmani

Both humbling pieces demonstrate that what is needed is kinder treatments, more effective treatments, more of them and they are needed now.

That is why, as much as we support others when they call for earlier diagnosis and better symptom awareness, our focus is, and will always be research – dedicated, well-funded, sustainable, UK based brain tumour research.

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