In October 2024, as part of wider reforms which aim to improve healthcare in England the government announced that it would be developing a National Cancer Plan.
It was shared that the aim of the plan would be to reduce lives lost to cancer, and to deliver improved care and patient experience to those affected. Some of the key focus areas of the National Cancer Plan include:
- Early Diagnosis
- Improving patient pathways
- Improving treatment and research
- Improving overall patient outcomes.
Each of these areas could potentially improve the way that brain tumour care is delivered in England. But we’re still calling for a National Brain Tumour Strategy. This remains the only comprehensive way to address the unmet needs of people affected by brain tumours across diagnosis, care, treatment and research.
Following the initial announcement, on World Cancer Day 2025 (February 4) it was confirmed that a consultation would be launched for the public and organisations to provide feedback to help shape the development of the National Cancer Plan. In this blog post we’ll break down the main themes of our submission but you can read our full response here.
What did we include in our submission to the National Cancer Plan consultation?
Brain tumours are the biggest cancer killer of people under 40. Treatment options for those affected remain limited and too often it can take a long time for someone to be diagnosed. This has resulted in outcomes not improving significantly in decades – as acknowledged by the government in the debate following its World Cancer Day statement.
This National Cancer Plan must acknowledge the unique nature of brain tumours and ensure that progress is made in delivering better care for everybody affected.
A faster, better diagnosis
For many people affected by a brain tumour, it simply takes too long to be diagnosed. Recent data suggests that cancer diagnostic pathways such as the urgent suspected cancer and non-specific symptoms pathways are not currently effective in diagnosing brain tumours. To help support Primary Care professionals with diagnosing brain tumours, we included that it’s vital that referral pathways are improved. Likewise, it’s important that funding into innovation which may lead to a faster diagnosis continues to take place. There must also be clear, established pathways that enable promising innovation to reach NHS frontlines effectively.
Additionally, we highlighted that current initiatives aimed at promoting early cancer diagnosis, such as the Faster Diagnosis Standard or Framework, don’t accurately capture brain tumour referrals. This is primarily because brain tumours are graded rather than staged. As a result, there’s a need to develop a suitable proxy measure to better assess the timeliness of brain tumour diagnoses.
Essential care and support
People often tell us that receiving their diagnosis and having their treatment options explained can be a confusing and overwhelming experience. That’s why it’s so important not only to improve how care is delivered, but also to make sure everyone has access to clear advice and compassionate, holistic support both throughout their treatment and during palliative care where needed.
Although past government plans have promised better coordination of care and support, we know that many families still struggle to access a dedicated Clinical Nurse Specialist (CNS). For people living with a brain tumour, whether high or low grade, personalised care, isn’t a luxury, it’s essential to make sure all their physical, emotional and practical needs are properly met.
New and better treatments
NHS standard treatment for adults with brain tumours hasn’t changed significantly in decades. While recent improvements to paediatric treatment for specific tumour types have begun to break through, innovations in treatment options for people diagnosed with brain tumours are lagging behind those available for many other forms of cancer.
In our submission, we shared information on how access to Whole Genome Sequencing (WGS) can be beneficial for those affected by brain tumours including by influencing treatment choices. However, we evidenced how timely access to WGS to sequence the patient’s entire tumour genome remains challenging and is impacting its benefits. We shared a solution for how this could be solved through the adoption of new technologies.
Pioneering research
Research into brain tumours is chronically underfunded and under resourced. We know that just 3.2% (£22.4m) of the over £700 million invested in UK cancer research funding in 2019/20 was spent on brain tumours, this must increase.
However, the challenges for research into brain tumours is greater than just matters of funding. There are systemic barriers that must be addressed. For example, there remain large gaps in translational research that turns laboratory discoveries into new, effective treatments for patients that have the potential to increase survival and improve quality of life.
An additional challenge is patient access to research. According to previous data shared by the Institute of Cancer Research, brain tumour clinical trials have the lowest recruitment levels compared to other cancer types. This is just one of the reasons why the Rare Cancer’s Bill proposed by Dr Scott Arthur MP, which aims to incentivise research and investment into treatments for rarer cancers, is so important. In our response, we shared that proposals within the Rare Cancer’s Bill, which include improving patient recruitment into clinical trials, should be included within this Cancer Plan.
Inclusion of low grade tumours
Throughout our submission to the Cancer Plan we sought to stress that low grade brain tumours must be included in any programmes of work that follow the detail of the Cancer Plan.
As a result of low grade tumours generally not being classified as cancerous, they aren’t consistently included in cancer programmes and initiatives. For example, low grade tumour experiences aren’t included in the National Cancer Patient Experience Survey but are in others such as the Cancer Quality of Life Survey. However, we know that diagnosis, treatment and care for people living with low grade tumours is very similar to those with cancerous tumours and the effects can be life-altering. Low grade brain tumours must be recognised within this cancer plan.
Next steps in influencing the National Cancer Plan
The Cancer Plan represents an opportunity for the government and the Department of Health and Social Care (DHSC) to address the unmet needs of the brain tumour community. Many previous NHS England and government plans have failed to include the needs of the community and this can’t happen again.
Here at The Brain Tumour Charity, we look forward to continuing to engage with the government, DHSC and MPs to ensure that the voice of the brain tumour community is heard. But we’ll also be continuing to call for the creation of a National Brain Tumour Strategy. A National Brain Tumour Strategy is the only way the unique challenges the entire brain tumour community face can be comprehensively addressed.