10-Year Cancer Plan for England

Government recently published a call for evidence to inform the development of its new 10-year Cancer Plan for England to last from 2022-2032. 

The 10-Year Cancer Plan for England is expected to build on the the NHS Long Term Plan that was announced in January 2019 by incorporating learnings from the COVID-19 pandemic and applying them to improve cancer services over the next decade.

As part of the development of the new plan, Government is asking for people to share their views and experiences of cancer care by completing a short survey before 11:45pm on 1 April 2022.

We’ve put together the following advice to can help you respond and make sure the experiences of those affected by brain tumours are central to the 10-Year Cancer Plan.

Take the survey

Guide to responding

It may be a good idea to open the survey in a new tab or window, while keeping this webpage open. That way you can switch between the survey and the guide and use it to help answer the question you’re on.

While you don’t have to respond to all of the questions, it will be helpful if you are able to.

When you are finished, it should show you a page with all your answers to the questions. If you would like, you can copy this and send it over to us at policy@thebraintumourcharity.org.

About You

The first question you will be asked is ‘In what capacity are you responding to this survey?’ please indicate the most appropriate answer, likely to be ‘An individual sharing my personal views and experiences’. We will be responding on behalf of an organisation as The Brain Tumour Charity.

You will then be asked if you are interested in being contacted about your response, and whether you would like to receive information about other consultations, please answer these as you would like to.

You may be asked to provide your email address, which is entirely your choice. More information about the data protection of responses to this consultation can be found here.

There is a section of questions about your personal characteristics, again it is entirely up to you whether you would like to provide this information or not. Any answers to these questions will be grouped with responses from people who share the same characteristics, so you will not be personally identifiable in the analysis.

Sections 1-3: Signs and symptoms, Access to information and Cancer treatment

To what extent do you agree with the statement: I have enough information to identify the signs and symptoms of the different types of cancer?

Which of the following sources would you go to for information on the signs and symptoms of cancer? (Select up to 5)

Have you received cancer treatment? If yes, please let us know if your treatment was completed before the pandemic.

The first three questions are about your personal experience, please answer as you feel is correct based on your own experiences and what you feel comfortable sharing.

You can answer these questions whether you have had cancer treatment yourself or not – or you can also leave it blank.

If you answer yes to the third question you will then be asked a supplementary question:

Thinking of your most recent cancer treatment, what could have been done to improve your overall experience? Please enter up to 3 suggestions.

Again, please answer as you feel is correct based on your own experiences and what you feel comfortable sharing.

You may wish to consider:

• the support you were provided with, or signposted to, during your treatment
• whether anyone discussed research options and participation with you
• the timeliness of your treatments and the options available to you
• whether you were provided with written information about your treatment, including any side effects you may experience
• any impact of the COVID-19 pandemic on your treatment.

Section 4: Priorities for the Cancer Plan

In your opinion, which of these areas would you like to see prioritised over the next decade? (You can select more than one option)

These are all incredibly important areas and we would like to see them all addressed in the new 10-year Cancer Plan. As you are welcome to select more than one option, you can choose as many of the areas listed as you would like.

Section 5: Delivering these priorities

The word limit for this section is 500 words per question. We have included some useful information and points to consider below to help you answer these questions. If you have time, we recommend you respond in your own words. Please share as much or as little about your own personal experience in your answers as you feel comfortable with.

Do you have any suggestions for how to raise awareness of the causes of cancer and how it can be prevented?

According to Cancer Research UK, it is thought that 3% of brain tumours in the UK are preventable, meaning the vast majority of brain tumours are not. There are a number of factors that cause a small increase in risk, such as being overweight, ionising radiation and certain genetic conditions. More information about this can be found on our website.

So while there are ways everyone can reduce their risk of cancer in general, including by keeping to a healthy weight, we still don’t yet know enough about how brain tumours develop to implement specific strategies to try to prevent a large proportion of cases.

We believe it is important to highlight:

• how important it is that funding is invested into research to develop our understanding of how brain tumours develop, grow and behave. This will be instrumental in helping us find better ways of preventing, detecting, treating and ultimately curing brain tumours.

Do you have any suggestions for how to raise awareness of the signs and symptoms of cancer?

There are over 130 types of brain tumours, with incredibly varied and often vague or non-specific symptoms such as headaches, fatigue, balance problems, seizures, vision problems and others. Some of these symptoms, may be more commonly attributable to other conditions, such as migraines, anxiety or dementia, making diagnosis very challenging.

Raising awareness of the signs and symptoms of brain tumours alongside investing in research into potential diagnostic and triage tools, could help ensure people receive the diagnosis, treatment and support they need at the earliest opportunity.

Over ten years ago, The Brain Tumour Charity established HeadSmart, a campaign aimed at raising awareness of the common signs and symptoms of brain tumours in children and young people. The HeadSmart campaign, developed in partnership with the University of Nottingham’s Children’s Brain Tumour Research Centre and the Royal College of Paediatric and Child Health was highly successful in helping reduce average childhood time to diagnosis from over 13 weeks to 6.5 weeks. Public facing awareness campaigns are particularly vital for reaching audiences unfamiliar with the signs and symptoms of brain tumours.

We believe it is important to highlight:

• how diagnosing brain tumours is challenging, but that’s why greater awareness of the signs and symptoms amongst the public could help more people seek support when they need it.
• that successful public health and awareness campaigns require sustained investment and resourcing including from Government to enable public awareness and behaviour change to be maintained.
• how providing dedicated training on brain tumour symptoms for healthcare professionals, including GPs and opticians, could help ensure that patients are referred for appropriate tests as promptly as possible.

Do you have any suggestions for how to get more people diagnosed quicker?

Early diagnosis is a unique challenge for brain tumours, due to their varied and often non-specific symptoms, as well as their location in the body.

Brain tumours are diagnosed through a range of routes, including via GPs, opticians and through emergency presentation in A&E, with many experiencing a prolonged journey to diagnosis and multiple visits to a healthcare professional.

It is essential that all brain tumours are diagnosed at the earliest possible opportunity, with people being supported to recognise the signs and seek help if they are concerned about a potential symptom, and healthcare professionals being supported to identify when patients need to be referred for appropriate tests.

With brain tumours not being ‘staged’ in the same way as other cancers, the existing overall ambition in the NHS Long Term Plan for ‘75% of cancers to be diagnosed at stage 1 or 2 by 2030’ unfortunately cannot help drive or track progress in brain tumours.

We believe it is important to highlight:

• how greater investment in research to better understand how brain tumours develop and grow, and the barriers to early detection will be critical to developing new and effective interventions and tools to help get more people diagnosed quicker.
• that the NHS Long Term Plan aim for early diagnosis is not fit-for-purpose for brain tumours, and we need to make sure that there are clear ambitions to help diagnose brain tumours earlier.
• that greater research funding is needed to develop diagnostic and triage tools for brain tumours as a priority, including as the exciting multi-cancer early detection blood test being piloted by NHS England unfortunately does not detect brain cancer.

Do you have any suggestions for how to improve access to and experiences of cancer treatment?

We believe that all brain tumour patients should have access to the best and most appropriate care for them, including receiving holistic support for their needs before, during and after treatment.

For many brain cancer patients, treatment options remain limited – and survival rates overall are still worryingly low with just 12% of adults diagnosed with brain cancer surviving five years or more. That’s why we believe greater investment in research is essential and must be prioritised to help better understand the disease and develop more effective treatments, as well as helping meet the needs of those affected to improve their quality of life.

We also know that not everyone with a brain tumour is currently informed about any opportunities to participate in research, and we need to improve this to ensure as many patients as possible are able to take part in research.

Initial results from our Improving Brain Tumour Care surveys have also shown that many patients have not be given a named healthcare professional to co-ordinate their health and social care support, as is recommended in clinical guidance.

We believe it is important to highlight:

• that it must be a priority to invest significantly in the cancer workforce to ensure every brain tumour patient (including those diagnosed with a low-grade or high-grade tumour) has access to a Clinical Nurse Specialist (CNS) or key worker to co-ordinate their care and help answer any ongoing questions or concerns. Having access to a CNS can also have a positive impact on patient wellbeing.
• how providing all brain tumour patients with access to a Clinical Nurse Specialist (CNS) would help to answer questions and provide support to patients, and they may also highlight any potential research participation opportunities.
• how increasing the number or proportion of brain tumour patients who are given the opportunity to participate in research could not only help benefit those currently undergoing treatment, but could accelerate progress into prevention, diagnosis and treatment.

Do you have any suggestions for how to improve after-care and support services for cancer patients and their families?

We know that so many people affected by brain tumours have significant unmet needs during and after their treatment, and this needs to be addressed. One important way of doing this is through Holistic Needs Assessments (HNA), which enable a personalised care plan to be developed that is tailored to an individual’s specific needs.

HNAs can be extremely important for ensuring patients’ needs are met and identifying areas where extra support is required. This activity is often carried out by a nurse specialist, highlighting the importance of access to a CNS for all brain tumour patients.

We know that at present not every person diagnosed with a brain tumour is being offered a HNA, and where they have been, there is not always an effective care plan put in place. Action to ensure HNAs are being routinely offered and care plan is essential to ensure that all patients are supported in all aspects of treatment and care, and in particular can be signposted or referred to other available support or services.

We believe it is important to highlight:

• that all brain tumour patients should be offered a Holistic Needs Assessment (HNA) to help identify areas of support required and ensure a full, written care plan can be put in place. These can include interventions wider than treatment and medical support such as access to counselling, financial support and signposting to other charities for support.

Section 6: Improving data and translating research into practice

Do you have any suggestions for how can we maximise the impact of research and data regarding cancer and cancer services in England, including how we can translate research and data into practice sooner?

Patient data is crucial in providing insights to advance medical research and holds significant potential to deliver benefit to patients, as well as measuring progress.

Tools like the Brain tumouR Information and Analysis Network (BRIAN) could have a major role to play in harnessing the power of medical and clinical data and patient-reported quality of life information, and making these datasets available in a safe, ethical and responsible manner to researchers, clinicians and patients to help drive improvements in quality of life and accelerate progress towards cures. However, accessing good data can be costly and time consuming, and there are often mistakes and errors in the datasets which cause inconsistencies and make trends harder to understand.

We believe it is important to highlight:

• how providing researchers with safe to access comprehensive and consistent data could provide crucial insights to move towards the government’s goals to improve cancer survivability.
• how increasing research funding into brain tumours will increase the knowledge and understanding of brain tumours, accelerate new treatments, and enhance quality of life through evidence-based supportive care. 

Experience of the survey

You will then be asked some questions about your experience of the survey, which are optional. Please answer them as you would like to.

Finally, remember to click ‘Submit’ so your results are saved.

You’ve made it! 

Thank you so much for taking the time to submit a response to the 10-year Cancer Plan consultation, we really appreciate you taking action and we hope that together we can have a big impact as the Government will see these important issues multiple times in their analysis.

Please encourage your friends and family to fill in the survey as well. We will update on the next steps of the development of this 10-Year Cancer Plan as and when it is announced.

If you have any questions or would like any further information, please contact the Policy & Campaigns team at policy@thebraintumourcharity.org

Use your experience

Use your personal experiences with brain tumours to help shape the work being done by The Brain Tumour Charity.

Find out more