Have your say on the future of NHS England cancer care
The government recently announced that it will be developing a National Cancer Plan for England to help it achieve its ambition of reducing the number of lives lost to cancer. To help shape this plan, Department of Health and Social Care is asking asked people to share their views and experiences of cancer care in England by completing a survey.
Unfortunately, brain tumours are often overlooked in NHS cancer programmes because they behave significantly differently to most other types of cancer.
It’s vital that brain tumours – both high grade and low grade – are recognised in the upcoming National Cancer Plan for England. This will help ensure everybody diagnosed with a brain tumour receives the best possible care, treatment and access to research.
If you’d like to raise your voice for change and make sure the experiences of the brain tumour community are representing in the National Cancer Plan for England, we’ve put together a guide to help you complete the survey.
The deadline for completing the survey is 29 April 2025 and you should be able to complete the survey in about half an hour.
Who can participate?
The survey is open for individuals who’ve been personally affected by cancer – whether you’ve been diagnosed yourself or a loved one has. It’s also open for professionals and organisations working in the field.
Although low grade brain tumours aren’t cancerous, it’s vital that people affected by a low grade brain tumour take part so that their experiences can help shape the National Cancer Plan for England. This is because people affected by a low grade brain tumour will often share many of the same experiences of somebody affected by a high grade tumour – for example, accessing some of the same cancer services and following a similar route to diagnosis.
While the plan is being developed for England, we know that people in Scotland, Wales and Northern Ireland might have to cross the border into England for care and treatment. If this is your experience, please do complete the survey.
Guide to completing the survey
First is a brief ‘about you’ section where basic demographic information (personal characteristics) is asked. This can help the government address potential healthcare inequalities and make sure their policy-making is representative.
If you don’t feel comfortable answering these, there’s a “prefer not to say” option.
The rest of the questions are optional and all have a multiple-choice section where you’ll be asked to select the top three options that you feel would have the most impact.
Each question also has textbox for you to add further information. We encourage you to share your personal experiences, but we’ve also included some points you might want to include to highlight the challenges faced by the brain tumour community.
-
Which cancer risk factors should the government and the NHS focus on to improve prevention?
It’s suggested that just 3% of brain tumours in the UK are related to external factors, meaning most of them aren’t preventable. This means most of the tick box options aren’t relevant to brain tumours.
We recommend selecting ‘other’ and adding in some of the following points.
- Only a small percentage (3%) of brain tumours are preventable. This means focusing on preventing illnesses is unlikely to benefit the brain tumour community.
- We need to make sure that the government plans recognise that not all cancers can be prevented. A continued sole focus on prevention risks diseases like brain tumours being left out of these plans, and progress falling further behind.
- Brain tumours should be treated as a priority so that funding is invested into research to develop our understanding of how brain tumours develop, grow and behave. This will be important in helping us find better ways of detecting, treating, and ultimately, curing brain tumours.
-
What actions should the government and the NHS take to help diagnose cancer at an earlier stage?
More than 12,000 people are diagnosed with a brain tumour in the UK every year. A faster diagnosis can open options for patients and their families to receive better care, support and treatment.
But we know that not everyone receives a fast and efficient diagnosis. Our Improving Brain Tumour Care surveys showed that 55% of respondents reported that their child’s brain tumour was originally diagnosed as something else first. We also know that 47% of patients were diagnosed with a cancerous brain tumour through emergency presentation in England.
There are some options in the tick-box list that would be relevant to improving the diagnosis of brain tumours, including:
- Improve symptom awareness, address barrier to seeking help and encourage a timely response to symptoms
- Support timely and effective referrals from primary care (for example, GPs)
- Increase diagnosis test access and capacity
- Increase support for research and innovation
If you wish to add further details, you could use the text box to highlight some of these points:
- Because brain tumours are not staged in the same way as other cancers, and do not spread around the body in the same way, current NHS programmes around diagnosing cancers earlier do not include brain tumours.
- The government must develop a new way to track the diagnosis of brain tumours so they are not left out of the current targets around staging.
- The Brain Tumour Charity have an ongoing awareness campaign to support faster recognition of the signs and symptoms of brain tumours aimed at the public and healthcare professionals https://bettersafethantumour.com/
- The government can support the faster diagnosis of brain tumours by increasing the investment into GP and radiology departments, including the workforce, and by creating new diagnosis targets that do actually include brain tumours.
-
What actions should the government and the NHS take to improve access to cancer services and the quality of cancer treatment that patients receive?
Brain tumours are a complex disease to treat since they are not a singular disease. There are more than 130 different types of tumour, with different locations in the brain.
Currently the standard treatment for high-grade (cancerous) brain tumours is surgery (if possible), chemotherapy and radiotherapy. Low grade tumours, despite not being classed as cancerous will often follow the same treatment pathway. These treatments can be harsh and can impact a person’s quality of life.
But so far, we have not found a cure. Around 40% of adults diagnosed with a high-grade brain tumour survive for one year or more, and 13% will survive for five years or longer. This must improve.
There are some options in the tick-box list that would be relevant to improving the treatment of brain tumours, including:
- Increase treatment capacity (workforce)
- Improve communication with patients ensuring they have all the information they need
- Increase availability of physical and mental health interventions before and during cancer treatment
- Increase the use of genomic (genetic) testing and other ways of supporting personalised treatment.
If you wish to add further details, you could use the text box to highlight some of these points:
- The current treatment for brain tumours in adults in England has not changed significantly for more than 20 years, lagging significantly behind other cancer types.
- Treatments for both high grade and low grade tumours can have long-term, harmful impacts on the brain – 60% of children who survive brain cancer cannot live independently as a result of the side effects from harsh treatments.
- Taking part in clinical trials is vital to understanding brain tumours but also how to treat them. But brain tumour clinical trials have the lowest recruitment levels compared to other cancer types.
- We must see brain tumours embedded as a clinical priority alongside a strategic plan for adequately resourcing and funding for discovery, translational and clinical research.
-
What can the government and the NHS do to improve the support that people diagnosed with cancer, treated for cancer, and living with and beyond cancer receive?
Around 88,000 people are living with a brain tumour in the UK. We know there is wide variation in the quality of care that patients and their families receive.
There are some options in the tick-box list that would be relevant to improving the care and support for people with or affected by brain tumours, including:
- Provide more comprehensive, integrated and personalized support after an individual receives a cancer diagnosis and after treatment
- Improve the emotional, mental health and practical support for patients, as well as their partners, family members, children and carers
- Offer targeted support for specific groups, such as ethnic minority cancer patients, children and bereaved relatives
- Increase the number and availability of cancer coordinators, clinical nurse specialists and other staff who support patients
- Increase the support to hospice services and charities who provide care and support for patients
- Improve access to high quality, supportive palliative and end of life care for patients with incurable cancer
If you wish to add further details, you could use the text box to highlight some of these points:
- The Improving Brain Tumour Care survey found that 85% of respondents felt they had unmet needs, and 58% needed more support managing the symptoms and side effects of their brain tumour.
- Access to Clinical Nurse Specialists (CNSs) and Holistic Needs Assessments (HNAs) are crucial to address the complex physical, emotional, and social challenges that come with a brain tumour diagnosis, and enable wraparound care that is truly tailored to people’s needs.
- Guaranteeing access to support for all aspects of care including both for physical symptoms and side effects as well as their emotional, practical, and financial concerns to all patients and their families.
-
How can the government and the NHS maximise the impact of data, research and innovation regarding cancer and cancer services?
Research into brain tumours is chronically underfunded. Just 3.2% of the £700 million invested in cancer research funding in the UK was spent on brain tumours– this includes spending by charities like ours.
But we know that just increasing the funding amount is not enough to transform the landscape. There are large gaps in the translating of laboratory discoveries into clinical trials, and then medical regulatory approval. This means that patients today are missing out on potentially promising new treatments.
There are some options in the tick-box list that would be relevant to improving research and innovation into brain tumours, including:
- Improve the data available to conduct research
- Improve patient access to clinical trials
- Increase research into early diagnosis
- Increase research into innovative treatments
- Increase research into rarer and less common cancers
- Speed up the adoption of innovative diagnostics and treatments into the NHS
If you wish to add further details, you could use the text box to highlight some of these points:
- There are significant differences in access to research for brain tumour patients. The Tessa Jowell Brain Cancer Mission has found that fewer than 5% of eligible brain cancer patients were accessing testing through NHS services in 2023. Every eligible brain tumour patient must be offered whole genome sequencing as part of standard protocol.
- Brain tumours should be embedded as a clinical priority alongside a strategic plan for improving the landscape as well as making sure there is enough funding for discovery, translational and clinical research.
- The landscape for getting treatments and interventions for brain tumours from lab to bedside quicker needs to be improved.
-
In which of these areas could the government have the most impact in reducing inequalities in incidence (cases of cancer diagnosed in a specific population) and outcomes of cancer across England?
While there is some evidence to suggest that people in their older age are at greater risk of developing a brain tumour, because brain tumours do not have the same external risk factors as other cancers, we cannot focus on particular ‘at risk’ population groups.
However, we know that there are inequalities in people’s access to care and treatment across the UK.
The postcode of people diagnosed with a brain tumour should not influence survival or experience of care. More action from the government is urgently needed to tackle the inequality in access and experience of care for all patients affected by brain tumours across the UK.
There are some options in the tick-box list that would be relevant to addressing inequalities across brain tumours care and treatment, including:
- Raising awareness of the signs and symptoms of cancer, reducing barriers and supporting timely response to symptoms
- Improving earlier diagnosis of cancers across all groups
- Improving the access to and quality of cancer treatment
- Improving and achieving a more consistent experience access cancer referral, diagnosis, treatment and beyond
- Improving the aftercare support for cancer patients
If you wish to add further details, you could use the text box to highlight some of these points:
- Brain tumour patients can experience a postcode lottery in all stages of their pathway. Not only are brain tumours a less survivable cancer, with a one-year survival rate of just 41.2%, there is major variation across the country – across Cancer Alliances the survival rate ranges from 49.4% to 37.2%.
- The Tessa Jowell Brain Cancer Mission revealed shocking variation in brain tumour services across the UK, with big differences in the quality of treatment and people’s experiences of care.
-
What are the most important priorities that the national cancer plan should address?
We believe that the only way to address the unmet need of the brain tumour community is by developing a National Brain Tumour Strategy for everyone affected by brain tumours. This would cover a faster, more efficient diagnosis, essential care and support, new and better treatments, and pioneering research.
There is an opportunity within this consultation for a National Cancer Strategy to address some of the unmet need, particularly for those with a high grade brain tumour.
There are some options in the tick-box list that would be relevant to ensuring brain tumours are a priority in the National Cancer Plan, including:
- Raising awareness of the signs and symptoms of cancers
- Earlier diagnosis of cancer
- Improving the access to and quality of cancer treatment, including meeting the cancer waiting time standards (which we don’t really use)
- Improving patient experience across cancer referral, diagnosis, treatment and beyond
- Improving the aftercare support for cancer patients
- Reducing inequalities in cancer incidence, diagnosis and treatment
If you wish to add further details, you could use the text box to highlight the need for a National Brain Tumour Strategy:
Systemic change is urgently needed to meet the unmet needs of the brain tumour community. These can only be comprehensively tackled through a National Brain Tumour Strategy that covers the whole pathway and takes note of the unique challenges facing this disease area
We need to see:
- Faster, more efficient diagnosis: Developing a new optimal diagnostic pathway across all four devolved nations, ensuring everyone receives a fast and efficient diagnosis of a brain tumour.
- Essential care and support: Ensuring every brain tumour patient and their family has good access to wraparound support, meeting all of their collective needs.
- New and better treatments: Offering every eligible brain tumour patient the chance to participate in clinical trials.
- Pioneering research: Recognising research into brain tumours as a clinical priority alongside a strategic plan for adequately resourcing and funding for discovery, translational and clinical research.
Support and Information Services
Research & Clinical Trials Information
You can also join our active online community.
In this section
Join our voices for change
By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.