A 10-year health plan for the next steps in care
In December 2024, we submitted our response to the 10-year Health Plan government consultation.
Following the publication of a review into the state of the NHS in September 2024, the government announced that a 10-year plan for health will be developed to address challenges and modernise the NHS.
The government gave the opportunity for both the public and organisations to submit a response to their consultation, with that feedback to shape the development of the 10-year Health Plan.
As well as encouraging the community to submit to this consultation, so your personal experiences could be recognised, we also submitted an organisational response.
It’s important that we submit to government consultations, like this, to highlight the experiences of the brain tumour community and ensure that we work together to improve outcomes and experiences, making sure the voice of the community is not left behind.
The government’s plan will be focused around implementing three ‘big shifts’ in health and care:
- Moving more care from hospitals to communities
- Making better use of technology in health and care
- Spotting illnesses earlier and tackling the causes of ill health
While improvements to these areas hold promise in the way that brain tumour care is delivered, we’re still calling for a National Brain Tumour Strategy. This is the only comprehensive way to address the unmet needs of people affected by brain tumours across diagnosis, care, treatment, and research.
Therefore, we’ve focused our response to the consultation for the 10-year plan around those key asks.
What are we calling for to be included in the 10-Year Health Plan?
Brain tumours remain the largest cancer killer of people under 40 years old. Around 40% of adults diagnosed with a high-grade brain tumour survive for just one year or more, and only 13% will survive for five years or longer.
Despite this, the 12,700 patients in the UK diagnosed with a brain tumour (both high and low grade) every year are falling through cracks in existing initiatives, resulting in outcomes not improving for decades. We must ensure new initiatives take the unique nature of brain tumours into consideration so the community’s care does not continue to fall further behind.
A faster, better diagnosis
Currently the only way to diagnose a brain tumour is through an MRI or CT scan, but we know there are challenges in getting a scan on time. We know through our Improving Brain Tumour Care Survey that many patients visit their GP multiple times before receiving a referral to diagnostic tests, and with many children initially receiving a misdiagnosis.
As well as our ‘Better Safe Than Tumour’ campaign to raise awareness of the signs and symptoms of brain tumours for both the public and healthcare professionals, we’re also calling for brain tumours to be included in national efforts to diagnose diseases faster.
Existing measures of achieving an early diagnosis for cancer, such as the Faster Diagnosis Standard or Framework, don’t capture brain tumour referrals accurately. This is because brain tumours aren’t staged, they’re graded. Therefore, we need a proxy measurement for the diagnosis of brain tumours to be developed.
Essential care and support
Patients and their families tell us that more can be done to provide better care and support in getting their diagnosis, to understand their treatment and care plans. It’s also important they are provided with advice and holistic support during their care, and throughout palliative care where needed.
Despite previous government plans committing to ensuring care and treatment are better coordinated and people are supported throughout, we know that not every family has good access to a dedicated Clinical Nurse Specialist (CNS) or a Holistic Needs Assessment (HNA). For our community, with both high and low grade tumours, personalised care is essential to ensure that all their care needs are met.
New and better treatments
NHS standard treatment for brain tumours hasn’t changed significantly in decades. While recent improvements to paediatric treatment for specific tumour types have begun to break through, treatment options for people diagnosed with brain tumours are lagging behind those available for many other forms of cancer.
There are emerging brain tumour treatments being explored internationally by academic and research industry teams. However, there are a number of systematic barriers that pose challenges when trying to bring these innovations in the UK.
The UK needs to ensure that it remains a global life sciences hub. This means a robust and fast assessment system that enables new treatments is available for people living with a brain tumour as quickly as is safe.
Pioneering research
We know that research into brain tumours is chronically underfunded and under resourced. In fact, just 3.2% (£22.4m) of the over £700 million invested in UK cancer research funding in 2019/20 was spent on brain tumours.
However, we also know that the challenges for research into brain tumours faced by researchers are larger than just matters of funding.
Innovative research is being conducted, but we need more to push forward faster. There are still gaps in the basic understanding of brain tumours, for example, the advancement from low grade to high grade tumours, and large gaps in translational research – translating laboratory discoveries into new, effective treatments for patients, extending survival and improving quality of life.
There are significant delays in translating laboratory research to clinical trials, and even further delays from clinical trials to medical regulatory approval. This means that brain tumour patients today are missing out on promising new treatments.
Next steps in influencing the 10-year health plan
Ultimately, the only way the challenges the brain tumour community face can be addressed is through a comprehensive plan that is tailored to the specific unmet needs of people living with a brain tumour. This is why we’re continuing to call for a National Brain Tumour Strategy.
However, while the government is looking to develop a 10 Year Health Plan, and subsequent National Cancer Plan, we’re doing everything we can to make sure brain tumours are not forgotten. We’ve seen years of previous NHS England and government plans fail to include the needs of our community – we won’t let it happen again.
You can still submit your response to the consultation for the 10-Year Health Plan to let the government know why brain tumours cannot continue to fall behind.