Call for evidence outcome

Results of the National Cancer Plan call for evidence

Updated 4 February 2026

Executive summary

In February 2025, the Department of Health and Social Care (DHSC) launched a call for evidence to inform the development of the National Cancer Plan.

We received 11,918 responses to the call for evidence:

• 10,624 were from individuals sharing their personal views
• 1,294 were from organisations and individuals sharing their professional views

The call for evidence was structured around a series of multiple-choice questions. Participants were asked to select 3 options for each multiple-choice question and explain their answer in the text boxes provided.

Questions covered the following topics:

• priorities for the National Cancer Plan
• prevention
• earlier diagnosis
• access to and quality of cancer treatment
• support for those living with and beyond cancer
• data, research and innovation
• inequalities in incidence and outcomes

Below is a summary of results from these questions, sorted by the percentage of respondents who picked each topic as a priority for the National Cancer Plan.

Early diagnosis and symptom awareness

In total, 70% of respondents selected earlier cancer diagnosis as a priority for the National Cancer Plan and 39% selected ‘raising awareness of cancer signs and symptoms’.

The top 3 actions chosen by respondents from a preset list to improve earlier diagnosis were:

• timely referrals from primary care (62%)
• increased symptom awareness (57%)
• improving cancer screening (55%)

Respondents shared a range of their own suggestions to improve early diagnosis. These included:

• increasing access to GP appointments and diagnostic tests to speed up referrals from primary care
• raising awareness of both common and less common cancer symptoms among the general public and primary care professionals
• expanding screening programmes to include a wider range of groups and cancer types

Access and quality of cancer treatment

61% of respondents selected ‘improving the access to and quality of cancer treatment, including meeting the cancer wait times’ as a priority for the National Cancer Plan.

The top 3 actions from a preset list chosen by respondents on treatment were:

• increased treatment capacity (69%)
• reviewing and updating treatment and management guidelines to improve pathways (51%)
• expanding genomic testing (42%)

Respondents also shared a range of their own suggestions. These included:

• increasing capacity through improvements to workforce recruitment, retention and training, and by investing in equipment
• reducing treatment variation across different cancer types and geographic regions
• ensuring consistent, compassionate care and communication for patients and carers

Prevention and reducing the risk of cancer

In total, 51% of respondents said ‘prevention and reducing the risk of cancer’ was the most important priority for the National Cancer Plan.

The risk factors from a preset list that respondents felt the government and NHS should focus on most were:

• obesity (62%)
• tobacco (55%)
• alcohol (43%)
• physical inactivity (42%)

Respondents shared a range of their own suggestions, including tackling consumption driven risk factors (for example, obesity, tobacco and alcohol) through increased awareness, regulation and targeted interventions such as risk labelling.

Common suggestions to tackle environmental risk factors (for example, air pollution and ultraviolet (UV) radiation) included raising awareness of the harms of UV and sunbeds, and interventions to improve air quality and ban harmful chemicals.

Patient experience and aftercare

In total, 37% of respondents picked ‘improving patient experience across cancer referral, diagnosis, treatment and beyond’ and 17% picked ‘aftercare’ as a priority for the National Cancer Plan to address.

The top 3 actions from a preset list chosen by respondents on living with and beyond cancer were:

• comprehensive, integrated and personalised support after diagnosis (66%)
• increasing the number and availability of support staff (59%)
• improving emotional, mental health and practical support (52%)

Common actions suggested by respondents included:

• better joining up of primary and secondary care
• providing patients with specific points of contact for support during and after treatment
• personalising support for patients’ individual needs, for example prehabilitation and rehabilitation, and mental health
• increasing the number of support staff

Reducing inequalities

In total, 17% of respondents said ‘reducing inequalities in cancer incidence, diagnosis and treatment’ was a priority.

The top 3 actions from a preset list chosen by respondents to address inequalities were:

• improving earlier diagnosis across all groups (63%)
• raising awareness of signs and symptoms and reducing barriers (56%)
• achieving a more consistent experience across referral, diagnosis, treatment and beyond (47%)

Common themes suggested by respondents included:

• reducing variation in access to diagnostic services, screening and primary care, and delays in referrals for children, women and deprived groups
• targeted awareness for underserved and minority communities, and children and young people (CYP)
• training for professionals to spot signs and symptoms in later diagnosed groups and cancers
• reducing geographic inequalities in access and quality of care

Research, innovation and data

Top priorities from a preset list chosen by respondents for research and innovation were:

• research into early diagnosis (71%)
• speed up the adoption of innovative diagnostics and technologies (61%)
• improve patient access to clinical trials (52%)

Common actions suggested by respondents included:

• reducing bureaucracy to adopt new treatments and streamlining the National Institute for Health and Care Excellence (NICE) process, and enforcing adoption of new treatments within clinical spaces to ensure consistency
• streamlining recruitment and decentralising trials to improve access regionally
• increasing research into new diagnostic tests, particularly for rarer and later diagnosed cancers

Introduction

In February 2025, DHSC launched a call for evidence to inform the development of the National Cancer Plan.

The call for evidence was open to members of the public wishing to share their views and experiences of cancer (individuals), and those responding in a professional capacity (professionals) or on behalf of an organisation (organisations). A further easy read version of the call for evidence was also available to individuals wishing to share their personal views.

The questions from the call for evidence are set out in the original call for evidence document ‘Shaping the national cancer plan’, which is available alongside this outcome document.

The approach used to analyse the results is set out in the methodology section of this report and is followed by a summary of the types of individuals and organisations who responded.

We then explore the results under the following headings, each one corresponding to one of the questions in the call for evidence:

• priorities for the National Cancer Plan
• preventing cancer
• diagnosing cancer at an earlier stage
• access and quality of cancer treatment
• supporting those living with and beyond cancer
• maximising the impact of data, research and innovation
• reducing inequalities in incidence and outcomes

Methodology

Format

Responses to the call for evidence were collected through a survey on GOV.UK. The call for evidence was open for 12 weeks, closing on 29 April 2025. Two versions of the survey were available on GOV.UK:

• a standard survey, open to individuals, professionals and organisations, which received 11,894 responses
• an easy read survey, which was open to individuals only, and received 24 responses

Analysis

The surveys included 7 ‘closed’, tick-box-style questions, from which respondents could pick up to 3 preset options. Each question was followed by a text box where respondents could write other suggestions and explain their answers.

The percentage of respondents who selected each multiple-choice option was calculated from the survey results for each question and broken down by respondent type (individual, professional or organisation) and demographics (for example, sex, age and ethnicity) to identify common priorities among groups of respondents. All responses were given equal weighting when calculating the overall percentages for each multiple-choice question.

Comments from individuals were analysed using a topic modelling and tagging system. This identified common word clusters across responses for each question, which were reviewed alongside a sample of representative quotes, to determine an appropriate label and theme. A sample of responses was then read by analysts to quality assure the results of the modelling.

Comments from professionals and organisations were analysed separately from those of individuals sharing personal experiences. As the volume of comments from professionals and organisations was too small to topic model, analysts manually reviewed each response and logged the findings in a standardised template to identify themes across responses.

As the analysis relies on qualitative data, which may be subject to individual interpretation and bias, at least 2 independent reviewers analysed responses, and no quantitative values were assigned to the themes generated from open-ended questions. Instead, a summary of the main themes for each question has been provided in the sections below.

Quotes from respondents

This report includes anonymised quotes that represent the main themes from our analysis. For shortened comments, the omitted text is represented by an ellipsis in square brackets “[…]”. Some spelling and grammar errors have been corrected for ease of reading, with missing words indicated by square brackets where the intended word or words in question were obvious. No other changes have been made, and care was taken to preserve the original meaning and tone.

Respondent characteristics

This section provides information on the characteristics of individuals and professionals who responded to our call for evidence.

Age

Table 1: age of individuals sharing their personal views

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (England)
16 to 24	75	1%	10.6%
25 to 34	285	3%	13.6%
35 to 44	833	8%	13.1%
45 to 54	2,058	19%	13.3%
55 to 64	3,145	30%	12.5%
65 to 74	2,843	27%	9.8%
75 or above	1,316	12%	8.6%
Prefer not to say	69	1%	Not applicable

Source of population data: Office for National Statistics (ONS), Census 2021 - age by single year.

Ethnicity

Table 2: ethnicity of individuals sharing personal views

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (England)
White	10,115	95%	81.0%
Asian	163	2%	9.6%
Black	74	1%	4.2%
Mixed or multiple ethnic groups	126	1%	3.0%
Other ethnic group	33	0.3%	2.2%
Prefer not to say or did not answer	113	1%	Not applicable

Source of population data: ONS, Census 2021 - ethnic group.

Sex and gender identity

Table 3: sex of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (England)
Female	8,542	80%	51%
Male	2,044	19%	49%
Prefer not to say	38	0.4%	Not applicable

Source of population data: ONS, Census 2021 - sex.

Table 4: gender identity of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents
Gender identity the same as sex registered at birth	10,523	99%
Gender identity different to sex registered at birth	33	0.3%
Prefer not to say	68	0.6%

Experience of cancer treatment

Table 5: responses to the question ‘Do you have personal experience of cancer or cancer services?’

Group	Number of individual respondents	Percentage of individual respondents
Yes, as a patient	6,989	66%
Yes, as a carer	2,081	20%
No	817	8%
Yes, as an NHS staff member	532	5%
Yes, as a researcher	65	1%
Other	1,328	12%
Prefer not to say	137	1%

Approximately 85% of respondents had direct experience of cancer as either a patient or a carer of someone with cancer. Most respondents who chose the ‘other’ option were friends with or family of someone who had experienced cancer, or worked in another area of cancer, for example in the charity or volunteer sector.

Table 6: treatment date of individuals who have experience as a cancer patient

Group	Number of individual respondents	Percentage of individual respondents
I received treatment in the last 5 years	2,267	32%
I’m currently receiving treatment	1,939	28%
I received treatment more than 5 years ago	1,807	26%
I received treatment in the last year	1,326	19%
No, I have not received cancer treatment	208	3.0%
I’m waiting to start treatment	163	2.3%
Prefer not to say	22	0.3%

Location

Table 7: region of England where individual respondents currently live

Group	Number of individual respondents	Percentage of individual respondents	Estimated percentage of population with this characteristic
East Midlands	843	8%	9%
East of England	897	8%	11%
London	874	8%	16%
North East	525	5%	5%
North West	1,267	12%	13%
South East	2,423	23%	16%
South West	1,400	13%	10%
West Midlands	986	9%	11%
Yorkshire and the Humber	893	8%	10%
Outside of England	496	5%	Not applicable
Prefer not to say	20	0.2%	Not applicable

Source of population data: ONS, Mid-year population estimates, June 2024, Estimates of the population for the UK, England, Wales, Scotland, and Northern Ireland.

Professionals

Table 8: sector that individuals sharing their professional views work in

Group	Number of professional respondents	Percentage of professional respondents
Public sector	826	83%
Private sector	68	7%
Not for profit, for example charity	67	7%
Retired	25	3%
Other	7	1%

Organisations

Table 9: type of organisation

Group	Number of organisations	Percentage of organisations
Not for profit	184	61%
Business	47	15%
Public sector body	35	12%
Professional body	20	7%
Academic institution	12	4%
Other	6	2%

Priorities for the National Cancer Plan

Summary

The top 3 priorities for the National Cancer Plan selected by respondents were:

• earlier diagnosis (70%)
• improving access to and the quality of cancer treatment (61%)
• prevention and reducing the risk of cancer (51%)

Table 10: responses to the question ‘What are the most important priorities that the National Cancer Plan should address?’

Response	Individuals	Professionals	Organisations	All respondents
Earlier diagnosis of cancer	71%	57%	56%	70%
Improving the access to and quality of cancer treatment, including meeting the cancer waiting time standards	61%	60%	52%	61%
Prevention and reducing the risk of cancer	51%	56%	39%	51%
Raising awareness of the signs and symptoms of cancer	40%	32%	27%	39%
Improving patient experience across cancer referral, diagnosis, treatment and beyond	37%	39%	41%	37%
Improving the aftercare support for cancer patients	17%	15%	13%	17%
Reducing inequalities in cancer incidence, diagnosis and treatment	15%	33%	40%	17%
Other	1%	2%	14%	1%

Priorities chosen from the preset list varied by respondent type:

• early diagnosis was the top priority for individuals (71%) and organisations (56%), while professionals were most likely to prioritise access to treatment (60%)
• male respondents were more likely to prioritise earlier diagnosis, prevention and awareness of signs and symptoms, while female respondents were comparatively more likely to pick treatment, patient experience, aftercare and inequalities
• respondents aged 25 to 54 were generally more likely to pick inequalities, patient experience and aftercare, while those aged 16 to 24 and 65 and over were more likely to choose early diagnosis and signs and symptoms
• respondents from ethnic minority groups were more likely to choose inequalities and patient experience

Collectively the most common priorities suggested by respondents were:

• enhancing early detection and diagnosis of cancers, including expanding and improving screening programmes, as well as increasing awareness of risk factors, signs and symptoms among both the public and medical professionals
• reducing disparities in access to treatment and services, particularly addressing geographical inequalities and ensuring faster referrals, diagnosis and treatment to avoid delays and the associated mental health impact
• improving patient experience and support, especially aftercare, by providing more personalised, compassionate and continuous support throughout the cancer care pathway, and ensuring better mental health and holistic services for patients and carers

Individuals sharing their personal views

The analysis of text-based responses identified the following priority themes:

• prevention
• early detection (primary care and screening)
• waiting times and access
• patient experience and support
• research

Prevention

Primary prevention measures, which aim to prevent cancer cases before they happen, were widely suggested by respondents. Suggestions included reducing risk exposure through awareness of risk factors and their link to cancer, targeting interventions at higher risk groups and encouraging healthy lifestyle choices.

For example, one respondent said:

Quite simply, you have to start at the start and that means doing all that can be done to prevent the causes of cancer […]

Secondary prevention measures, which aim to detect cancer at the earliest possible stage, were also suggested. Priorities here focused on increasing awareness of the signs and symptoms of cancer, alongside the causes.

As one respondent put it:

Prevention is better than cure! If you can prevent cancers by raising awareness on how people can reduce their risk, but ensure people know early signs and symptoms and can access appointments quickly […] you have better patient outcome and it also leads to less treatment needed and less complex and extended treatment needed.

Early detection (primary care and screening)

Some respondents shared difficulties in accessing GP appointments due to a lack of capacity or availability of in person appointments.

For example:

Referrals from GPs to specialists are within the 2-week window but getting to see the GP in the first place is fraught with difficulties now. […]

Some said that GPs and other healthcare staff should be provided with further information about the signs and symptoms of cancer to prevent delays or symptoms being dismissed, particularly for less common cancers where symptoms are less well recognised.

One respondent said:

GPs should be thinking worst case not least case which is why so many cancers are diagnosed late. Our GP actually said to me, ‘Well I see all sorts of lumps and bumps not my fault I [didn’t] pick it up.’

Another respondent said:

The symptoms for leukaemia can often be mistaken for other less serious conditions and people sent away without a simple blood test. Better awareness among GPs and consistency of approach is needed so leukaemia and other blood cancers are identified swiftly […].

Others shared the personal impact of delays and dismissals, for example:

[…] My mum was going back and forth to her GP and A and E with very specific symptoms during the 6 months before she died - no one listened to her or took her concerns seriously.

Screening was frequently mentioned, and some respondents suggested expanding screening programmes to include younger age groups and rarer cancers. Quality and uptake were also mentioned, with some respondents recommending adopting less invasive methods and using alternative scans and tests for cancers less likely to be spotted by existing screening tools.

For example:

A lot of good work has been done already with screening […] Bowel cancer screening should be brought further forward to target persons of 40 plus as this seems (from personal experience) to be affecting people of a younger age. Further work should be done in making these screening programmes more publicised and accessible, including increasing their simplicity and making the process as ‘non-invasive’ as possible.

Waiting times and access

Waiting times for treatment, diagnosis and referrals were widely regarded as unacceptable and inconsistent by some respondents. They highlighted geographic variation in waiting times and the types of treatment on offer, with some labelling it as a ‘postcode lottery’.

For example:

The wait for tests is ridiculous, 2 to 4 weeks for a scan can be the difference between life and death. The cancer waiting times for treatment need to be quicker, and within guidelines! The whole experience is terrifying […].

Another respondent said:

I think that the postcode lottery for treatment should be seriously looked into as it is appalling to be at a disadvantage in the treatment on offer simply because of where you live.[…]

Some also spoke of the mental toll that waiting can take on those with cancer, and the potential impact on patient survival from delays to diagnosis and treatment.

For example:

First GP refused to refer me to specialist; then I had to wait for over 3 weeks to [be] seen after the referral instead of the NHS 2 weeks guideline; then I had to wait over 3 months to have an operation instead of 2 months NHS guideline. The whole process has been delayed in every step of the way. During this long wait, I suffered severe mental health issues like very high level of anxiety and depression due to the helplessness and hopelessness of the endless waiting that [was] beyond my control.

Patient experience and support

Some respondents felt let down by a lack of support and care during and after their cancer treatment. Aftercare was a particular area of concern, with many sharing their experience of a ‘cliff edge’ of care following the end of treatment.

For example, one respondent said:

My patient experience has been a total lack of support, empathy, no person-centred care, no care in care, and that A and E was horrendous. I feel I have had to battle health care professionals all the way in finding out information and getting involved in my own care. It is simply not good enough and feels like a 3rd world service.

Another respondent said:

When treatment is finished you fall off a cliff edge. This is the time when support is crucial. I’m a proactive individual who sought out support, challenged the treatments I was offered and quoted the excellent research out there back to whoever would listen but I still felt incredibly let down.

Research

Some respondents advocated for more research into the development of new treatments, including tests and treatments for rarer cancers such as pancreatic, brain or childhood cancers.

For example:

[…] The most important priority for me as a brain tumour patient is for the government to invest in research into rarer cancers to ensure we develop kinder, more effective treatments to give patients equality of hope for more time with a higher quality of life.

Another respondent said:

More research is required to discover methods of early detection, especially in elusive cancers with poor outcomes like pancreatic cancer. […] More clinical trials looking at early detection and diagnostics, especially with pancreatic cancer, are required.

Others emphasised the importance of adopting new treatments quickly and consistently to maximise impact.

For example:

Getting better treatments and researching them [as soon as possible] […]. If there is a medication or treatment available and proven to work then the government need to find ways to make sure all patients can access them.

Professionals and organisations

The analysis of text-based responses identified the following priority themes:

• prevention
• early diagnosis and symptom awareness
• treatment
• workforce
• patient experience and aftercare
• inequalities
• innovation
• governance

Prevention

Professionals and organisations recommended expanded education and awareness campaigns to increase understanding of individual cancer risk and the factors behind it. Targeting this at high-risk groups was highlighted as a way to reduce inequalities in incidence and outcomes.

Many respondents also recommended strengthening existing prevention programmes and the overall government prevention strategy. Suggested interventions included an expansion of cessation services and screening, along with new interventions to manage specific risk factors, such as a ban on sunbeds.

A smaller number of respondents emphasised the need for more research on the causes of cancer, particularly for cancers where there may be no known risk factor.

Early diagnosis and symptom awareness

In addition to awareness campaigns around risk factors, organisations and professionals suggested several campaigns to raise awareness of the signs and symptoms of cancer. These included improved training for GPs and pharmacists to help them better spot cancer symptoms.

Improvements to referrals from primary care, for example through increased capacity in diagnostics and streamlined referral forms and processes, were also widely recommended, reflecting similar comments from individuals.

Many professionals and organisations wanted to see an expansion in existing screening programmes, increased screening frequency and new screening programmes for other cancers. Some also advocated for targeted testing and surveillance for groups with known genetic risk, or a history of late presentation, rare or less survivable cancers.

Developing and adopting new, innovative technologies such as artificial intelligence (AI), robotic diagnostics and genetic testing (genomics) was widely cited as a priority by many. Some respondents expressed optimism in the potential of these innovations in addressing challenges in capacity, referrals and late diagnosis.

Treatment

Many responses emphasised the need to cut treatment waiting times to maximise the benefits of an early diagnosis. Some suggested the possibility of increasing treatment capacity through further investment in equipment and staff, and by optimising pathways, for example by using digital appointment booking and reminders.

Some respondents called for more consistent access to innovative treatments, noting current regional variation. They emphasised the need to update equipment, like radiotherapy machines, to keep pace with advances, and advocated for higher quality, tumour-specific treatments that minimise patient side effects.

Investing in and adopting genomic testing, AI pathways, robot-assisted surgery and other new technologies was a priority for many organisations and professionals. The need for continued research into better treatments to reduce the impact on patients was named as another priority.

Workforce

Organisations and professionals felt that staff capacity was essential to improving treatment quality and access. Specialist staff such as cancer co-ordinators, clinical nurse specialists (CNSs), surgeons and staff delivering systemic anti-cancer therapy (SACT) and radiotherapy, were highlighted as important gaps in existing resource. Recommendations largely focused on investment in additional staff, equipment and training.

Some respondents also wanted to see greater join-up between staff across the cancer pathway and between different specialties. Some suggested this could be achieved through multidisciplinary collaboration teams and formal link-up with other health specialties, for example with prehabilitation and rehabilitation.

Communication with patients was an area many felt needed improvement, particularly with vulnerable patients such as children and those with learning disabilities. Many respondents suggested additional training for staff around communication, with a particular emphasis on children and young people and end-of-life care.

Patient experience and aftercare

Organisations and professionals advocated for personalised support for patients, through shared decision making and a wider array of holistic support. Continuous care across the pathway was emphasised, including prehabilitation and rehabilitation. They noted that this could be delivered through care co-ordinators with a focus on face-to-face appointments and personalised support and care plans.

Several areas of support were mentioned, with mental health support for patients, carers and family members a priority among respondents. They said patients and families should be referred to appropriate support services automatically, including financial support, and given better access to support which could be facilitated by moving care into the community. Better access to timely and compassionate palliative care was also mentioned by many.

Some respondents emphasised the importance of improving patient outcomes, both in quality of life and survival. Some suggested improvements to measuring patient outcomes through metrics such as the Cancer Patient Experience Survey (CPES), while others suggested comparing survival outcomes between cancers and against peer nations.

Inequalities

Organisations and professionals expressed concern about geographic inequalities in access to cancer treatments, particularly newer therapies, SACT prehabilitation, late effects services, palliative care and services for children and young people. These disparities were attributed largely to an uneven distribution of resources and treatment centres.

Some raised concerns about inequalities in the stage at which cancers are diagnosed. They advocated for targeted interventions to reduce inequalities between cancer types, including rare cancers, the ‘biggest killers’ (such as lung cancer) and late diagnosed cancers (such as pancreatic cancer).

Some respondents also recommended expanding data collection on cancer inequalities and introducing new performance measures to track progress on tackling inequalities. They highlighted several areas to focus on, including reducing inequalities in risk factors and incidence, which they said could be supported through further research into cancer inequalities.

Innovation

Many organisations and professionals felt commercial and operational barriers were slowing down the adoption of innovations. Recommendations focused on reducing bureaucratic processes, for example by improving the process for evaluation and implementation, which would unlock public-private partnerships to fund new innovations.

Others highlighted inequalities in accessing innovative treatments. They emphasised the importance of distributing funding equitably across all regions, with some recommending improving the approach to long-term funding and introducing measures for specific funding to support innovation and service development.

Some respondents called for increased research and innovation in the development of new cancer treatments. There was a particular emphasis on scaling up genetic testing to expand access, and improve early diagnosis and patient outcomes.

Concerns were raised regarding the need for additional funding and incentives to support clinical trials and research specifically targeting children and young people, specific tumour types (for example, brain and pancreatic) and personalised treatments.

Some respondents recommended enhancing digital infrastructure and expanding the use of AI to support cancer research and care. They advocated for greater use of existing data sets, such as imaging, and to improve data collection and sharing, particularly for clinical trials and research initiatives.

Governance

A small number of respondents also advocated for a centralised, cross-government approach to cancer governance, including the appointment of a national cancer director and the establishment of an expert committee.

Others requested public reporting of progress on cancer and the implementation of the National Cancer Plan. This included the introduction of survival targets and key performance indicators (KPIs), particularly for less survivable cancers and cancers affecting children and young people.

Preventing cancer

Summary

In total, 51% of individuals and 53% of professionals and organisations said ‘prevention and reducing the risk of cancer’ was the most important priority for the National Cancer Plan.

Respondents were more likely to select this as a priority if they were:

• male (61%, compared to 49% of females)
• Black (56%) or other ethnicity (57%), compared to those identifying as White (51%)

Table 11: responses to the question ‘Which cancer risk factors should the government and the NHS focus on to improve prevention?’

Response	Individuals	Professionals	Organisations	All respondents
Obesity	62%	71%	63%	62%
Tobacco	55%	59%	54%	55%
Alcohol	43%	49%	43%	43%
Physical inactivity	42%	49%	33%	42%
Air pollution	24%	22%	12%	24%
UV radiation	19%	22%	9%	19%
I don’t know	9%	2%	3%	9%
Other	12%	8%	37%	12%

The risk factors from a preset list respondents thought the government should focus on most were obesity (62%), tobacco (55%) and alcohol (43%). Obesity received the most responses from all 3 respondent types, with 62% of individuals, 71% of professionals and 63% of organisations selecting this option.

Responses varied by respondent type:

• female respondents were comparatively more likely to choose alcohol and less likely to choose tobacco than male respondents
• younger respondents were more likely to choose environmental risk factors such as UV radiation and air pollution compared to older respondents. Concerns about tobacco were highest in the youngest (16 to 24) and oldest (65 to 74, and 75 and above) age groups
• Asian, Black and other ethnic groups were more likely to choose alcohol compared to White and Mixed respondents

Collectively the most common issues and actions suggested by individuals, professionals and organisations put forward were:

• interventions to tackle consumption-driven risk factors such as tobacco and alcohol awareness campaigns (for example, risk labelling, minimum pricing and stricter regulation)
• interventions to reduce exposure to environmental risk factors, such as air pollution, UV radiation and carcinogens, including awareness campaigns, removing Value Added Tax (VAT) on sunscreen, banning sunbeds, and policies to improve air quality
• education and awareness targeted towards school-aged children to promote life-long healthy choices and improve understanding of risks

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• consumption driven risk factors
• life circumstances and physical risk factors
• environmental factors
• other risk factors

Consumption driven risk factors

Many individuals highlighted the risk from consumption-driven risk factors such as unhealthy or processed foods, alcohol, tobacco and vaping. Respondents had varied assessments of the current level of awareness of the link between these risk factors and cancer.

For example:

I think the dangers of tobacco are well documented and smokers are fully aware of the risks to cancer. However, I think the general public still isn’t aware of the dangers of physical inactivity, alcohol and obesity in relation to cancer.

Another respondent said:

Most people already know that smoking carries a significant cancer risk - fewer people know about the link with alcohol and physical inactivity. Many people are unaware that processed food and chemicals in everyday products including cosmetics also potentially carry a risk.

Some respondents suggested interventions to limit the sale of ultra-processed foods and to discourage vaping, smoking and drinking.

For example:

[…] Alcohol is one of the biggest contributors to cancer and the consumption is increasing. Reduce this through taxation and enforcement of minimum unit pricing. Smoking and vaping remain a problem with increasing numbers of younger people starting vaping with no understanding of the long-term consequences. Removing shops selling vapes from the town centre and legislation around packaging would reduce this.

Early education was highlighted to support lifelong healthy choices, alongside wider education and awareness campaigns for the adult population.

For example:

Education is key and also measures to support and inform personnel about the risks associated with smoking, eating ultra processed food and alcohol. Stopping the start.

Another respondent said:

I feel we should all take more personal responsibility for our own health. This begins with education at a very early age around the importance of diet and exercise and maintaining a healthy weight. But I think this should continue throughout school.

Life circumstances and physical risk factors

Obesity and physical inactivity were highlighted as areas of increasing risk and low awareness of the link to cancer.

One respondent said:

People who use alcohol and tobacco in excess know the risks and continue to do so; risks are stated on the packaging and adverts. But with obesity and physical inactivity, the risks are not clear to all.

Another respondent said:

[Alcohol] and [tobacco] risks have been part of a public awareness [campaign] for a long time but obesity is the new threat, and sufferers are probably less aware of the risks to health. Physical inactivity is also an area where I [believe] people are unaware of the serious health risks.

Environmental factors

Responses covered a wide array of environmental risk factors including UV radiation, air pollution, exposure to chemicals, endocrine disruptors (chemicals that affect hormones) and microplastics. Many of these focused specifically on UV radiation, advocating for increasing awareness of the harms of UV radiation, tanning and sunbeds.

For example:

Tobacco is notorious for causing cancers. Skin cancers are also on the increase and not so well recognised as being caused by the sun.

Another respondent commented:

UV radiation harm must include the use of sunbeds not just sunbathing. Hopefully people should be informed of safe sunbathing and sun cream. However, sunbeds should in my opinion be banned in the UK as in Australia and New Zealand. No skin protection is used, and the harmful UV rays are emitted in very close proximity to the skin.

In Australia, there is a ban on commercial sunbed use, and in New Zealand sunbed use is restricted to those aged 18 and over.

Unlike UV radiation where individuals can take steps to protect themselves, some respondents highlighted the lack of individual control in reducing exposure to air pollution and the need, therefore, for government intervention.

For example:

Air pollution affects everyone, unlike the other risk factors which we have some personal control of. No one person can control the air that we breathe.

Another respondent said:

Air pollution is something beyond an individual person’s control and [affects] the whole of society, therefore the government needs to take equal responsibility in reducing cancer rates.

Other risk factors

A wide range of other risk factors were submitted by respondents, most commonly stress and genetics. Other respondents, highlighted cancers with no clear risk factors, advocating for equitable focus on these cancers alongside those considered ‘preventable’.

As one respondent commented:

40% of cancers are currently preventable which means 60% are not. Funding for prevention and awareness with regard to preventable risk factors should be balanced carefully with this in mind ensuring that the 60% of non-preventable cancers get equality of extra funding in terms of raising awareness of non-preventable risk factors […]

Professionals and organisations

The analysis of text-based responses identified the following themes:

• tobacco and alcohol
• obesity, physical inactivity and diet
• environmental factors

Tobacco and alcohol

Many professionals and organisations said that the risks of tobacco use were well known by the public, but that further work was needed to raise awareness of the risks of vaping, particularly among young people. Many also advocated for expanded cessation support services in local communities and incentives to stop smoking and reduce smoking rates.

Some respondents said that greater awareness of the link between alcohol and cancer was needed. Suggestions included advertising, awareness campaigns and education on harms, alongside interventions to reduce consumption such as minimum pricing, risk labelling and other policies targeted at groups with high consumption.

Obesity, physical inactivity and diet

Organisations and professionals emphasised the need to address both diet and physical inactivity to reduce obesity. They said that campaigns and education should focus on the harms of obesity and the benefits of exercise. Some respondents said that more could be done in schools to tackle rising rates of obesity.

Some organisations and professionals advocated for support to help individuals make healthy choices, for example through local weight management services, prescriptions and programmes supporting people to get active, and by providing support towards the cost of healthy food. Regulating unhealthy foods such as ultra-processed foods and increasing the affordability of healthy foods was also suggested.

In addition to preventing cancer, some responses also discussed the role of exercise in improving cancer outcomes, reducing cancer recurrence and improving mental and physical health.

Environmental factors

On UV radiation responses suggested the government legislate to limit or ban the use of sunbeds. More generally, many felt more could be done to educate individuals on the risks of UV radiation and sunbeds. Interventions here focused on increasing affordability and access to sunscreen, for example by removing VAT and providing free sunscreen at large outdoor events.

Some respondents said that tackling air pollution was important for improving cancer prevention. They noted that this risk factor required government-led intervention, as individuals have limited autonomy in reducing their own exposure. Interventions should be targeted at urban populations, for example screening those living in urban areas with high levels of air pollution. More broadly, interventions to improve air quality should be expanded, for example encouraging the use of public transport to reduce exposure.

Diagnosing cancer at an earlier stage

Summary

In total, 71% of individuals and 57% of professionals and organisations said ‘earlier diagnosis of cancer’ was the most important priority for the National Cancer Plan.

Respondents were more likely to select this as a priority if they were:

• male (78%, compared to 68% female)
• aged 65 to 74 (74%) or 16 to 24 (73%), compared to an overall of 70%
• of other ethnicity (73%)
• living in the North East (72%) or East of England (72%)

Table 12: responses to the question ‘What actions should the government and the NHS take to help diagnose cancer at an earlier stage?’

Response	Individuals	Professionals	Organisations	All respondents
Support timely and effective referrals from primary care (for example, GPs)	63%	58%	56%	62%
Improve symptom awareness, address barriers to seeking help and encourage a timely response to symptoms	56%	64%	61%	57%
Make improvements to existing cancer screening programmes, including increasing uptake	57%	42%	41%	55%
Increase diagnostic test access and capacity	53%	57%	52%	53%
Increase support for research and innovation	34%	30%	29%	33%
Develop and expand interventions targeted at people most at risk of developing certain cancers	24%	37%	35%	25%
I don’t know	0%	0%	2%	0%
Other	2%	4%	9%	3%

Selections from the preset list varied by ethnicity and sex:

• female respondents were more likely to choose timely referrals, while males were comparatively more likely to choose improvements to screening
• White respondents were less likely to choose awareness of symptoms and addressing barriers to help-seeking (57%) than those who identified as Asian (61%) or Black (76%)

Collectively the most common issues and actions suggested by individuals, professionals and organisations were:

• expand diagnostic capacity, including primary care capacity, test capacity, and updated equipment and infrastructure
• speed up referrals by reducing barriers to and from primary care, including increased awareness of symptoms among the public and primary care
• make improvements to screening through increasing capacity, reducing barriers to uptake, and increased targeted screening

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• primary care capacity
• awareness of symptoms and seeking help
• improvements to screening
• research and innovation

Primary care capacity

Some respondents emphasised the need to address barriers to accessing GP appointments, particularly face-to-face appointments, to prevent delays to referrals.

For example:

I think delays in GP referrals is the main thing. It can take weeks to see a GP in the first place, then they send a letter of referral, then you wait for your appointment, then they go through all the details again, then you eventually have some diagnostic tests, then you wait for the results…

Another respondent said:

The length of time from a referral to diagnosis makes a big difference to patients. The waiting is very stressful, and this may increase the cancers growth speed. […] Increased diagnostic test capacity would have an impact on those stressful waiting times.

Some suggested giving GPs access to a wider range of tests, while others focused on increasing test capacity to speed up turnaround times and give patients quick answers.

For example:

GPs need to be better supported in how they can refer patients for diagnostic tests. For this to happen there needs to be greater capacity built into the NHS to enable patients to undergo timely diagnostic tests. Time is of the essence when it comes to cancer. It waits for nobody.

Awareness of symptoms and seeking help

Potential lack of awareness of cancer symptoms among GPs and the public was raised as a major barrier to early diagnosis. Some respondents suggested this could be tackled with a mix of general and targeted awareness campaigns, for example:

Regular messaging of symptoms would help educate the population on being more vigilant and responsible for their own health and risks. People known to be at high risk of developing certain cancers should have more targeted attention in terms of helping them to mitigate their risks and be able to access relevant and timely diagnostics and interventions.

Alongside education and awareness for patients, some respondents felt GPs should be supported with the right tools and training to help identify and refer patients.

For example:

I believe it is essential that we are all aware of symptoms but more importantly, I believe primary care, GPs, need to be far more aware of early symptoms for both primary and secondary cancers. More support needs to be given to allow GPs to refer patients within the shortest timescale and for these patients to receive the required referrals asap.

Another respondent said:

If doctors are equipped with great tools such as blood tests to detect cancers, there would be less need for referrals to diagnostics, there would be more referrals for treatment, or more complex diagnostics. the diagnostics should be done routinely, if less or not invasive for all population.

Some respondents shared first-hand experiences of their concerns and symptoms not being taken seriously leading to late or misdiagnosis, particularly for younger people.

For example:

I attended my GP surgery 17 times, urgent care 6 times and A and E 3 times before being diagnosed. My symptoms did not change in this time. My age (25 to 34) was a major factor in being dismissed. […]

Improvements to screening

Some respondents felt access to screening should be widened in general, and for younger people in particular, with some discussing the risk for those who fall just outside of existing age ranges for screening.

For example:

The scope of screening programmes should be expanded where appropriate. In particular, women should be offered screening for breast cancer from a younger age for example, 40. I know so many women who have been diagnosed with breast cancer in their 40s - including myself - having never been offered screening.

Some respondents mentioned the importance of increasing uptake for existing screening programmes by tackling issues such as stigma and embarrassment that can act as barriers. Others called for screening for rare cancers or cancers that might be missed through existing screening methods, such as lobular breast cancer.

For example:

A big improvement to the breast cancer screening, would be to invite all women showing with dense breasts, to a further breast MRI, to check for lobular breast cancer, as it’s highly likely to be missed on normal mammogram screening. […]

Research and innovation

Responses here were wide ranging, often addressing specific cancers, particularly for rarer cancers which some respondents felt lagged behind in research, innovation and funding. The development of new and improved diagnostic tests was a common theme, particularly where these may aid screening.

For example:

We need to invest in research to find more and kinder diagnostic measures, and screening methods. No progress has been made on this front for so many cancers - my own cancer, mucinous ovarian cancer, could only be definitively diagnosed once my tumour was removed. […]

Another respondent commented:

I would ask that focus is given into researching and developing a screening programme for those at risk of pancreatic cancer. Too many people are receiving terminal cancer diagnosis (often via A and E) and then go on to die due to lack of screening for pancreatic cancer. Staggeringly 50% of people diagnosed will die within 3 months of receiving their diagnosis.

Professionals and organisations

The analysis of text-based responses identified the following themes:

• symptom awareness
• primary care
• screening
• tests
• research and innovation

Symptom awareness

Organisations and professionals mentioned the need for greater awareness of the signs and symptoms of cancer in the general population, particularly at-risk groups such as young people, those of minority ethnic background and marginalised groups, who they felt would benefit from targeted awareness. Others suggested focussing on specific cancers and their associated symptoms, most notably for cancer with lower survival rates or less recognisable symptoms.

Barriers to help-seeking were also frequently mentioned. These included emotional and social barriers, such as fear, embarrassment, stigma and concerns about outcomes, which some respondents felt should be tackled through targeted support for those less likely or less able to seek help.

Primary care

A lack of appointments due to capacity and workforce constraints was raised by many organisations and professionals as a fundamental barrier to early diagnosis of cancer in need of addressing. Once patients had secured an appointment, some respondents reported issues in gatekeeping by GPs which could result in patients’ symptoms being dismissed.

Suggestions to tackle these issues focused on providing training or tools, for example clinical decision-making tools and additional diagnostic tests, to GPs to help identify patients who should be referred onto a cancer pathway. Others suggested simplifying referrals by reviewing referral guidelines or improving information sharing between primary and secondary care to streamline the process.

Screening

Responses focused on 2 main issues:

• screening uptake
• the current scale and scope of screening programmes

Existing barriers to screening noted by respondents included practical barriers, such as working hours, travel and screening capacity, as well as social or emotional barriers, such as fear, embarrassment or stigma. Suggestions included expanding appointment availability, wider engagement with groups and communities to tackle social barriers, and developing newer, less invasive tests.

Others advocated for expanding eligibility for existing screening programmes, for example including younger age groups, at-risk groups, such as those with a genetic risk, and programme specific changes, such as extending lung screening checks to cover non-smokers.

Targeted population screening, surveillance and case finding was suggested for several at-risk groups, including those with inherited risk, occupational risk, lifestyle risk or from deprived areas. Some suggested that patients could be identified through community specific engagement or by using data and AI.

Tests

Organisations and professionals called for increased investment in diagnostic testing capacity to meeting growing demand and improve turnaround times. Some highlighted retention and recruitment to address specialist shortages and ensure workforce grows with capacity, while others suggested training pharmacists to undertake cancer testing, for example mole mapping.

Many organisations and professionals emphasised that investing in updated equipment and infrastructure could increase the quality, efficiency and availability of tests. Many suggested that adopting new innovations such as AI has the potential to improve productivity, and advanced testing and genomics could be expanded to advance treatments.

Improving service integration by improving patient pathways and collaboration between primary and secondary care was also suggested as a way to speed up testing and reduce issues and inconsistencies across the service.

Research and innovation

Research for new tests and early detection methods was mentioned by many organisations and professionals, particularly in relation to specific cancers such as pancreatic, bowel, skin and children and young people’s cancers. Other responses called for wider research into awareness of symptoms, barriers to seeking help and inequalities in early diagnosis.

Improvements to governance, for example streamlining pathways for medical technology (MedTech) approvals, and making it easier for scientists and researchers from overseas to work in the UK, were proposed. Investment was also highlighted as important for incentivising research and innovation. Areas for suggested investment included genomic testing, and AI for diagnostics, data tracking and research.

Some organisations and professionals also emphasised that issues with data completeness and accessibility they said could stifle research and innovation. Some respondents suggested that existing data should be better used, while also expanding data collection to cover areas that could support further research.

Access and quality of cancer treatment

Summary

In total, 61% of individuals and 58% of professionals and organisations said ‘improving the access to and quality of cancer treatment’ was the most important priority for the National Cancer Plan.

Respondents were more likely to select this as a priority if they were:

• female (62%, compared to 57% of males)
• of other ethnicity (64%, compared to 61% overall)
• living in the West Midlands (65%) or East of England (64%)

Table 13: responses to the question ‘What actions should the government and the NHS take to improve access to cancer services and the quality of cancer treatment that patients receive?’

Response	Individuals	Professionals	Organisations	All respondents
Increase treatment capacity (including workforce)	68%	78%	64%	69%
Review and update treatment and management guidelines to improve pathways (processes of care) and efficiency	51%	45%	46%	51%
Increase the use of genomic (genetic) testing and other ways of supporting personalised treatment	43%	34%	40%	42%
Increase the availability of physical and mental health interventions before and during cancer treatment	34%	41%	32%	35%
Improve communication with patients, ensuring they have all the information they need	34%	27%	31%	33%
Improve treatment spaces and wards, including facilities available to carers	26%	27%	12%	26%
Improve the flow and use of data to identify and address inconsistencies in care	24%	# 33%	47%	25%
I don’t know	2%	1%	1%	2%
Other	2%	5%	12%	2%

The top actions from a preset list respondents wished to see taken on treatment were:

• increase treatment capacity (including workforce) (69%)
• review and update treatment and management guidelines to improve pathways (processes of care) and efficiency (51%)
• increase the use of genomic (genetic) testing and other ways of supporting personalised treatment (42%)

Responses varied by respondent type:

• male respondents were more likely to choose treatment capacity, while female respondents were comparatively more likely to choose availability of physical and mental health interventions
• the proportion choosing increased treatment capacity increased with age, while younger respondents showed stronger support for mental and physical health interventions
• Asian, Black, and Mixed ethnicity respondents were also more likely to choose mental and physical health interventions than White respondents

Collectively the most common issues and actions suggested by individuals, professionals and organisations were:

• increases to capacity and workforce through recruitment, retention and specialist training, and investment in infrastructure and equipment
• improve pathway and system efficiency to reduce variation by tumour type and geography
• improve the provision of holistic care, including mental health support, prehabilitation and rehabilitation, and communication between staff and patients

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• insufficient staffing and treatment capacity
• treatment quality, research and personalisation
• compassionate and consistent care
• improve communication between services and with patients
• inequalities across geographies and cancer types
• earlier and faster diagnosis

Insufficient staffing and treatment capacity

Some respondents said that insufficient staffing and treatment capacity are significant barriers to timely and high-quality care. For example:

…In my experience there has been a dire shortage of staff and facilities and equipment. For example chemotherapy appointments running hours behind because chairs are double booked and then there’s no sufficient nurses or equipment to begin treatment. Radiotherapy appointments running hours behind, machines overheating and breaking down…

Suggestions included increased treatment capacity using specific treatment centres, increasing workforce capacity through improvements to recruitment, retention and support for staff, and improved communication across clinical and multidisciplinary teams (MDTs).

For example:

Consistency in care is really important - having familiar faces when you attend for treatment is so reassuring but is affected by recruitment and retention issues. Staff are in a very intense environment and need support themselves.

Treatment quality, research and personalisation

Some respondents wanted to see increased research investment, particularly for rare cancers and cancers affecting children and young people which was said to be lagging behind more common cancers.

For example:

So much progress is being made in treatments - maintaining the momentum to ensure that it is not a matter of luck/postcode whether trials, new procedures etc are available. Research into treatments specifically designed for children’s cancers should be a priority. Their cancers do not behave in the same way as adult cancers.

Treatment personalisation and the use of genomics was widely supported by respondents, with some sharing how genomic testing has helped their treatment. Access, however, was an area of concern and frustration as some respondents reported slow test turnaround times and inconsistent provision across trusts limit availability.

For example:

I believe I probably had my life saved by having access to genomic profiling of my tumour. I wasn’t going to be treated with chemotherapy until I had a [test] which showed my tumour was actually very aggressive and likely to recur and kill me with the treatment plan I was originally put on. I was able to access much more effective treatments after having the test done. [It] bothers me that I had to advocate to get it carried out in the first place.

Another respondent said:

[…] The NHS seems to be a minefield of inconsistent care, with some patients being given genomic testing in particular trusts, with others being denied this. Lastly, the only reason that I am alive now is that genomic testing identified the sub-type of lung cancer that I was diagnosed with and being given a targeted therapy drug to treat it. […]

Compassionate and consistent care

Some respondents said that they felt unsupported and staff sometimes lacked compassion. They felt that compassionate care practices and mental health support should be embedded into service delivery.

For example:

I received very poor care once passed to the cancer hospital and to an oncologist, she gave very little information, refused to answer questions and even walked out of an [appointment] when I started asking questions, she told [me] I didn’t need know this information. […] I suffered with severe anxiety and still do. […]

A different respondent said:

Patients are left without any care for their mental health after diagnosis, throughout treatment & after treatment has finished. Physically treated but mentally traumatised.

Another respondent shared:

[…] My care was painfully slow and I struggled to get the emotional support I needed throughout. I have been on waiting list after waiting list throughout treatment - and waited 4-6 weeks for the results of almost every biopsy, scan and surgical pathology report. I have needed extensive help for PTSD caused by the experience of cancer treatment on the NHS - it was that bad. I wish there was better psychological aftercare.

Other respondents highlighted the need to expand support for patients’ carers and families, and that suitable facilities should be available to them at treatment centres.

For example:

[…] Spaces and wards and facilities for all and carers - these need to be updated as we know people get better knowing they are loved and supported, and if they are going through a horrendous time, that their nearest and dearest are part of that journey and not shut out.

Another respondent said:

Carers are a huge support to those going through cancer treatment and they often worry more than the patient yet there is little support for them. They play an integral role is someone’s recovery.

Improve communication between services and with patients

Some respondents expressed frustrations with poor communication and co-ordination across the care pathway. Data sharing and communication between primary and secondary care and across trusts was highlighted as an important issue, with patients often having to fill the gap.

For example:

The communication between hospitals is unnerving! No one communicates between services appropriately it is actually a huge problem and patients left to fend for themselves. I call the system DIY healthcare - do it yourself.

Some respondents also shared how poor communication caused delays to treatment and the toll it took on their physical and mental health. They emphasised the need for staff to listen to patients and provide consistent information across all providers. Some respondents suggested that follow-up calls should be made to confirm next steps, reinforce information from appointments and ensure patients do not have to chase for updates.

For example:

Communication is key, things are not explained properly, there isn’t enough time for the patient and carer to ask questions and concerns. Carers are completely forgotten in all of this, and they are unpaid nurses (with no training or support) expected to take on full responsibility for the patient at home. It’s a massive ask and responsibility.

Another respondent said:

Communication - lack of information is stressful for the patient. I experienced this and was discharged from hospital without advice about wound care, dressings, bras. I found my advice on a fb cancer group. […]

Some respondents suggested that more information be provided to patients and carers before, during and after treatment, including self-care advice, and clearer details on treatments, side effects and prescribed drugs. Some emphasised the need for continuous care and support after treatment, for example:

Care, support and information should be given after treatment too. Once my treatment was “finished” I felt lost, alone and very unsure of what I needed to do next. My mental health really suffered. […]

Inequalities across geographies and cancer types

Some respondents highlighted how long wait times and geographic disparities significantly affect timely and equitable access to care.

For example:

Equality in cancer care, wherever you live. Whatever cancer you have. My husband had a rare cancer and as a result had to travel more than 3 hours to the regional centre for surgical consultations and subsequent surgery. We incurred significant travel costs and overnight stays in order to access the treatment. If we had lived in Birmingham or if my husband had a “common” cancer then travel costs would have been minimal and overnight stays unnecessary.

Several suggestions were made to reduce geographic inequalities, including improvements to data-sharing, targeted funding and localised service planning. Some recommended ensuring patients had the appropriate information about treatment options.

For example:

Health inequality should not be a [thing], and access to health care should not be a postcode lottery. This links to patients having all the info they need on options for care, not limited to their location. It is dangerous expecting [patients] to do their own research to access the right care.

Other respondents focused on inequalities by cancer type, recommending the development of dedicated support pathways for rare cancers and child cancers. They wanted to see rare cancer considerations integrated into national strategy and data collection.

Earlier and faster diagnosis

Some respondents called for increased investment in diagnostic tools and pathways for faster and earlier diagnosis. Many highlighted the benefits from this in reducing time to treatment and leading to better health outcomes for patients.

For example:

Waiting is one of the hardest aspects of cancer treatment as a patient, be it for chemo, scans, results, surgery. The longer the patient waits, the longer the ordeal with a potentially worse prognosis as a result which also increases the cost to the NHS [whereas] early diagnosis often means shorter and less invasive treatment. Win win for the patient and the NHS.

Another respondent said:

In addition, if the pathway from diagnosis to start of treatment had been faster, he [respondent’s partner] might have been able to have the operation that could have possibly saved his life. At the time of first consultation with a surgeon, he was told that he was lucky to be one of only 2% of those referred who were eligible for surgery but instead, by the time he’d waited for a further scan to check the progress of the tumour, it was too late. Faster tracking might have allowed him the operation and longer survival.

Professionals and organisations

The analysis of text-based responses identified the following themes:

• capacity and workforce
• update guidelines and improve pathways
• data to identify inconsistencies
• treatment spaces and wards
• communication
• physical and mental health interventions
• genomic testing and personalised treatment
• access (including quality and waits)

Capacity and workforce

Professionals and organisations emphasised the need to expand treatment capacity to meet current and future demand, which could be achieved by improving the rollout of innovations, new treatments and specialist services. Investment in infrastructure was also recommended to ensure treatment keeps up with technological advancements, for example new radiotherapy machines.

The cancer workforce was also mentioned, with some advocating for improvements to staff retention and training to meet capability gaps and prevent loss of knowledge. Some instead called for recruitment, expanding training posts and encouraging more staff into cancer specialisms as many current cancer specialists near retirement age.

Update guidelines and improve pathways

Many professionals and organisations called for standardisation of the cancer pathways to reduce variation by tumour type and geography. Specific cancer pathways they said needed review included leukaemia and lobular breast cancer. Others suggested new standardised pathways, for example for tumour and circulating tumour DNA (ctDNA) testing to reduce variation.

Some respondents expressed concern that cancer pathways were overused and requested clearer guidelines to reduce unnecessary referrals. Better use of data and technology to target variation and inefficiencies, more focus on local pathway improvement and a shift to a virtual cancer pathway model were also suggested as ways to reduce over-referring.

Data to identify inconsistencies

Many professionals and organisations raised issues around data collection, accuracy and completeness. Several areas were highlighted for improvements including admissions, staging and regional data, which some respondents said were inconsistently collected. This data should be further analysed for geographical variation and inconsistencies of care.

Data sharing between primary and secondary care was also a frequent area of frustration, creating barriers for patients, healthcare professionals and researchers. Introducing a single electronic record, including imaging data, was suggested by some to improve data sharing and efficiencies in care.

Some responses called for expansions in national cancer audits, particularly for brain and head and neck cancer, leukaemia, and the oesophageal and gastric audit. These should include audit metrics such as the deprivation gap for diagnosis, treatment and outcomes.

Treatment spaces and wards

Some respondents called for a variety of improvements to the spaces used for treatment and cancer care. A need for improved, dedicated prehabilitation and rehabilitation spaces was highlighted by some, as well as more local, accessible treatment spaces and centres to reduce long travel for patients. Treatment spaces could be audited to assess how efficiently spaces are being used.

A smaller group of respondents mentioned that facilities for children and young people are often insufficient and in need of investment. Some respondents said that spaces for the parents and carers of children and young people were often insufficient and needed expanding.

Professionals and organisations called for more funding for infrastructure, particularly for equipment used in cancer treatment such as radiotherapy machines. They also called for increased investment in treatment options for less survivable cancers.

Communication

Professionals and organisations said that poor communication could limit patients’ understanding of their disease and prognoses. They emphasised that clear, timely, compassionate communication is essential for shared decision-making, and this should account for different patient needs, for example those with learning difficulties. Communication could be improved using videos or clear, easy to digest materials such as infographics, with language tailored to patients.

Inter-service communication was also highlighted as it impacts the quality of care for patients. Difficulties communicating between primary and secondary care can lead to delays for patients, miscommunication and missed appointments.

Physical and mental health interventions

Organisations and professionals called for greater psychological support for patients during treatment. This was particularly emphasised for patients on long waiting lists for treatment, who they felt were currently underserved but were particularly vulnerable.

Prehabilitation and rehabilitation were suggested for both physical and psychological health. A smaller number of respondents also emphasised the need for children and young people specific prehabilitation and rehabilitation to help mitigate the lifelong impact of mental and physical health following treatment.

Aftercare was particularly highlighted as an area for improvement, with recommendations that mental health and wellbeing support services should be made available to all patients. Workforce constraints were pointed to for many of the current limitations in support during and after treatment.

Genomic testing and personalised treatment

Organisations and professionals advocated for an increase in the availability of genomic testing for all patients which they felt should be used to enable more personalised, targeted treatments. To achieve this, comments said further funding was needed for genomic testing and personalised treatment-based research.

Some respondents suggested updating pathways and treatment guidelines to reflect advancements in genomic testing to reduce variation and improve access. However, some respondents said that turnaround times would need to be improved to make genomic testing accessible and worthwhile.

Access (including quality and waits)

Organisations and professionals said that variation in waiting times for treatment needed addressing both geographically and between cancer and treatment types. The importance of equitable access was highlighted by many but is currently limited by a lack of availability for treatments and appointments.

Other comments focused on access to specialist teams and services, for example prehabilitation, rehabilitation and CNSs, which can vary between patient and by location. Distance from treatment centres was also highlighted, and some respondents suggested creating local specialist centres to reduce travel times for patients.

While many suggested digitisation could be used to improve the efficiency and join-up of care between primary and secondary care, others mentioned the risk of digitisation restricting access for older patients and the need for alternative methods of communication.

Supporting those living with and beyond cancer

Summary

In total, 37% of individuals and 40% of professionals and organisations said ‘improving patient experience across cancer referral, diagnosis, treatment and beyond’ was the most important priority for the National Cancer Plan.

Respondents were more likely to select this as a priority if they were:

• female (40%, compared to 27% of males)
• Mixed or other ethnic background (41%, compared to 37% White)
• aged 35 to 44 (43%, compared to 30% 16 to 24)

Table 14: responses to the question ‘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?’

Response	Individuals	Professionals	Organisations	All respondents
Provide more comprehensive, integrated and personalised support after an individual receives a cancer diagnosis and (if applicable) after treatment	66%	57%	75%	66%
Increase the number and availability of cancer co-ordinators, clinical nurse specialists and other staff who support patients	59%	64%	51%	59%
Improve the emotional, mental health and practical support for patients, as well as their partners, family members, children and carers	52%	55%	53%	52%
Improve access to high-quality, supportive palliative and end-of-life care for patients with incurable cancer	46%	47%	35%	46%
Increase the support to hospice services and charities who provide care and support for patients	42%	38%	26%	41%
Offer targeted support for specific groups, such as ethnic minority cancer patients, children and bereaved relatives	10%	22%	25%	11%
I don’t know	3%	1%	2%	3%
Other	2%	3%	12%	2%

The top actions from a preset list respondents chose to improve support were:

• provide more comprehensive, integrated and personalised support after an individual receives a cancer diagnosis and (if applicable) after treatment (66%)
• increase the number and availability of cancer co-ordinators, clinical nurse specialists and other staff who support patients (59%)
• improve the emotional, mental health and practical support for patients, as well as their partners, family members, children and carers (52%)

Responses varied by respondent type:

• female respondents were comparatively more likely to choose emotional, mental and practical support, and palliative and end-of-life support compared to male respondents
• younger respondents (16 to 54) were more likely to choose emotional and mental health support, compared to older respondents (65 and above), who were more likely to choose hospice and charity support
• ethnic minority respondents were more likely to choose targeted support for specific groups and emotional, mental and practical support, compared to White respondents

Collectively the most common issues and actions suggested by individuals, professionals and organisations were:

• integration and continuity of care, including between primary and secondary care, and specific points of contacts to provide ongoing support for patients during and after treatment
• improved holistic care, by integrating mental health support into pathways, personalising support for patients and their individual needs, for example prehabilitation and rehabilitation, and reducing geographic variation
• improve the number of support staff and improve communication between staff and patients to ensure care is compassionate and patients are referred to support services
• increase the availability and timeliness of palliative and end-of-life care

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• palliative and end-of-life care
• integration and continuity of care
• emotional, mental and holistic support
• improve communication and information sharing

Palliative and end-of-life care

Many respondents raised concerns about a lack of available beds in hospices and poor-quality end-of-life care in hospitals due to a lack of staff.

For example:

When it was obvious he wasn’t going to come home from that last stay, no room could be found at a hospice. He was left in agony because staff couldn’t give him more pain relief.

One respondent shared:

Recently a friend died at home because there was not a bed at the local hospice.

Another respondent said:

I have no hospice in my area. Better end of life care is required or speed up the dignity in dying bill.

And another said:

[Too] many people are suffering in agony due to cancer, end of life care needs more staff, hospice carers and family support advisors because people are dying without dignity.

Other responses supported assisted dying options, for example:

Palliative care has its very important uses but with all the will in the world it doesn’t always work so I sincerely hope that the option for assisted dying will become law sooner rather than later.

Integration and continuity of care

Many responses indicated that better co-ordination was needed within secondary care.

For example:

Many patients with cancer suffer from co-morbidities. This often leads to the requirement to be seen under multiple disciplines. The NHS lacks co-ordination in these services and patients will find that they have to manage their care under the NHS in a way which is both dispiriting, emotionally draining and time consuming. This can be as simple as co-ordinating multiple appointments to be on the same day to save travel time, stress and cost.

Many individuals shared the importance of continuity in staffing and having a familiar face throughout the course of their treatment.

For example:

The biggest issue for me is continuity of care, that the patients have the same GP, consultant, nurse etc throughout their cancer journey. For a patient to be able to bond with their nurse or doctor is a huge comfort for patients when they are scared and vulnerable.

Another respondent said:

Integrated care and continuity are essential for patients to understand their cancer.

Some individuals were also concerned about follow-up care after cancer treatment. They said patients would benefit from more primary care involvement or access to specific follow-up care teams.

For example:

Once treatment has finished and people are thrown into follow up and living after a cancer diagnosis there is very limited support. People need to be supported to recovery, and this is not when treatment finishes and can be for years after due to the impact of side effects.

Another respondent said:

Once my treatment finished that was it, no more appointments. It left me feeling worried and insecure. My safety blanket had gone.

Emotional, mental and holistic support

Some respondents said there should be better access to mental health professionals during and after cancer treatment for patients, families and carers.

For example:

Having conducted research with a group of cancer patients and speaking from my own experience, it seems that medical treatment is good but that the emotional and mental health needs from receiving and living with a cancer diagnosis are not.

Another respondent said:

I believe there should be trained professionals available to support patients during and post treatment to manage the trauma and support the anxiety and depression it creates. I believe after medical treatment finishes, there should be another stage of treatment aimed at emotional, mental and physical recovery so that patients can go on to live fulfilled lives.

Patients reported turning to cancer charities for support and guidance through their treatment, with some respondents supporting increased government funding to these charities.

Improve communication and information sharing

Some respondents said they wanted to see better communication between healthcare teams and between healthcare professionals and patients. They emphasised the importance of clear communication to help patients understand the process - which many said they found confusing and overwhelming - and to improve mental wellbeing among patients and their families.

For example:

Consistency and communication are what I require as a cancer patient. To be informed and aware, supported by appropriate agencies are crucial.

Some respondents said this could be facilitated through greater investment in training, and standards for staff-patient communication.

Professionals and organisations

The analysis of text-based responses identified the following themes:

• personalised support
• targeted support
• other support
• workforce
• hospices and charities
• end of life

Personalised support

Professionals and organisations said more should be done to manage late effects, side effects and after-effects of treatment. Examples given included supporting patient self-management through information sharing and using patient reported outcome measures (PROMs) and holistic needs assessments to evaluate and monitor patients.

Some suggested specific programmes could be implemented prior to treatment to improve the effectiveness of treatment, and after treatment to improve outcomes and reduce the chance of recurrence.

Others suggested using digital tools to improve personalisation. For example, virtual appointments could improve access and follow-up, and record sharing could improve co-ordination between healthcare teams.

Targeted support

Responses on this topic focused on inequalities across race, sex, age, nationality and disability, among others, suggesting targeted support tailored to these groups to reduce variation in care and outcomes. For example, age-appropriate support for children and young people.

Inequalities between cancers was another area of concern, with comments calling for better access to specialist and specialist care for those diagnosed with haematological, child brain, secondary breast, leukaemia and less survivable cancers.

Some comments also said that families and carers lacked sufficient support. For example, bereaved families and carers should have access to support following the death of a loved one with cancer.

Other support

Professionals and organisations called for more embedded mental health support, including psycho-oncology, counselling, talking therapy and cognitive behavioural therapy (CBT). This also covered core support after treatment, and services that help join up primary, secondary and community care to ensure continuity of care.

Other areas of support mentioned were nutrition, sexual health and emotional support. Support for carers was also highlighted, as well as support for childcare for parents or guardians undergoing treatment.

Navigating the benefits system was said to be challenging and time consuming, and the cost of accommodation, travel and insurance could be compounded by the potential loss in earnings patients and carers experience. Responses noted this is particularly challenging in the cases of children and young people, where families may have to travel long distances to specialist treatment centres.

Getting people back into work was another area where some respondents said more support and guidance was needed. Others suggested introducing greater guidance for employers and addressing employer stigma around cancer. Employers could play a role in ensuring individuals can attend screening, diagnostic and treatment appointments.

Workforce

Some professionals and organisations emphasised the need for increased support and funding for staff. They called for improved availability of important personnel, such as CNSs and specialist staff dedicated to specific cancers.

Others suggested better integration of support staff within care pathways and to improve co-ordination between different members of staff to ensure more joined-up and effective care for patients.

Hospices and charities

Some professionals and organisations called for formalised support to be provided for hospices, including the allocation of central funding. They suggested that improved integration and collaboration with charities would help to produce valuable resources for patients and carers.

Several respondents suggested linking patients to community organisations and prioritising clear signposting to the support available.

End of life

Some professionals and organisations called for increased investment and financial support for end-of-life care. They said that additional support for home care could reduce hospital admissions and, where possible and appropriate, support patients who wish to die at home.

Some respondents highlighted variation in access to end-of-life and palliative care due to geography. They said that patients should be supported in accessing palliative and end-of-life care at the earliest possible stage in the patient pathway.

A smaller number of comments raised specific elements of end-of-life care, for example access to specialist and children and young people’s palliative care. Others mentioned experience of palliative care, and recommended staff training to ensure all patients experience appropriate and compassionate care and end of life.

Maximising the impact of data, research and innovation

Summary

Respondents were not asked about data, research and innovation in relation to priorities for the National Cancer Plan. However, a separate question on maximising the impact of data, research and innovation was included elsewhere in the call for evidence. Results from this question are summarised below.

Table 15: responses to the question ‘How can the government and the NHS maximise the impact of data, research and innovation regarding cancer and cancer services?’

Response	Individuals	Professionals	Organisations	All respondents
Increase research into early diagnosis	73%	58%	43%	72%
Speed up the adoption of innovative diagnostics and treatments into the NHS	61%	65%	53%	61%
Improve patient access to clinical trials	52%	53%	54%	52%
Increase research into innovative treatments	49%	41%	31%	48%
Increase research on rarer and less common cancers	25%	23%	29%	25%
Improve the data available to conduct research	21%	38%	47%	23%
I don’t know	2%	3%	2%	2%
Other	1%	4%	15%	2%

The top actions from a preset list respondents wanted for research and innovation were:

• increase research into early diagnosis (72%)
• speed up the adoption of innovations (61%)
• improve patient access to clinical trials (52%)

Responses varied by respondent type:

• male respondents were comparatively more likely to choose research into early diagnosis, while female respondents were more likely to choose access to clinical trials and research on rarer cancers
• younger respondents (16 to 44) were more likely to choose rare and less common cancers than older respondents (65 and above) who were more likely to choose early diagnosis
• ethnic minority respondents were more likely to choose data available to conduct research, and Black and Asian respondents more likely to choose access to clinical trials, than White respondents

The most common issues and actions suggested by individuals, professionals and organisations were:

• faster adoption of new treatments by reducing bureaucracy and streamlining the NICE process, and prioritising and enforcing adoption within clinical spaces to ensure consistency
• increase access to trials by streamlining recruitment and decentralising studies to improve access regionally, and by increasing incentives for research
• increase research into new diagnostic tests, particularly for rarer and later diagnosed cancers

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• rare and under-researched cancers
• funding and resources
• early diagnosis
• data availability and use
• faster innovation, approval and adoption of new treatments

Rare and under-researched cancers

Some respondents highlighted gaps in support, funding and research for rare and hard-to-diagnose cancers, such as lobular and inflammatory breast cancer, pancreatic cancer and childhood cancers. Many noted that these cancer types are frequently overlooked, leading to poorer outcomes for patients compared to those with more common cancers. Some respondents recommended government research funding and strategy to be more effectively targeted towards these rarer cancer types.

For example:

[…] People diagnosed with rarer or less common or less survivable cancers are being written off by this government; they should be given more access to clinical trials and treatments to increase their chance at survival.

Another respondent said:

[…] Rare cancers are very much the poor relation to the extent that if you are aware enough and happen to be diagnosed with one you pretty much know it is a death sentence - I am thinking of some brain tumours and pancreatic cancers.

And another said:

I have lobular breast cancer which was missed on annual mammograms 4 times and ultrasound. Lobular [breast cancer] urgently needs more funding to understand this type of cancer and [its] behaviour in more detail. Current treatments are based on research into ductal breast cancers.

Some respondents emphasised the need for public awareness campaigns to highlight the signs and symptoms of rare and late-stage cancers, in order to diagnose cases earlier and improve survival rates. They also stressed the importance of investing in and trialling innovative diagnostics, such as breath tests for pancreatic cancer, to ensure innovations are quickly brought into practice.

For example:

Rare and less common cancers are stuck in a vicious circle. People are less aware of them so they attract less interest and less resource and as a result there is less awareness of them. Currently there’s a lot of reliance on people directly affected by these cancers to raise funding and awareness, but with less people affected we can only do so much. It needs additional resource to really get some changes to break this cycle.

Funding and resources

Some respondents called for the government and the NHS to increasing funding for targeted research into specific cancers and under-researched areas, including dedicated funding for rare and hard-to-treat cancers. Some emphasised, however, that advancements in treatments and innovations needed to be implemented for research spending to have an impact.

For example:

[…] The fact that several rarer and/or harder to treat cancers outcomes have not significantly improved in decades is a poor reflection on how we (the UK) prioritise funding. I totally understand that it is common sense to spend money in such a way that benefits the most people, BUT, we cannot continue to marginalise people with certain cancers because they are ‘too expensive’ to treat. […]

Early diagnosis

Some respondents highlighted that delays in the adoption of innovations in diagnostics and treatments for rare and aggressive cancer costs lives. Research into diagnostic tools and new treatments was therefore suggested as a priority for the government and NHS. Some respondents suggested prioritising funding and fast-tracking innovation for rarer and less common cancers.

For example:

As mentioned earlier there are many types of new treatments with proven effectiveness which take a long [time] to be approved for use in the NHS, even once they are proven and licensed. [For] example, there are many many monoclonal antibody treatments available but only a handful in use. Having discussed this at length with an oncology pathologist involved in research, he claims we need to focus less on doing more research into new treatments and more on adopting the new ones that have already been developed.

Another respondent said:

The process for the adoption of innovative diagnosis and treatment seems to be woefully slow. I often feel that there are those in the position of making decisions haven’t had to live through cancer diagnosis and treatment.

Data availability and use

Some respondents said they wanted to see the issue of fragmented and inaccessible data systems, which they felt stall research and innovation, addressed. They suggested establishing a centralised data platform for patient records to streamline access for research, analysis and clinical trials.

For example:

[…] NHS data provides a rich source of data for researchers to use. However this data is in fragmented systems. Researchers waste a lot of time/resource trying to access appropriate data. One centrally co-ordinated access point could speed this up, allowing researchers to spend more time on their research. […]

Another respondent said:

Yes improve the data, merge the myriad of data sets the NHS hold into a central system and employ top analysts and AI technology to find the golden nuggets. The best treatment plans are hidden gems in that data and how the cancers transform are also hidden in that data.

Transparency around how data is collected, processed and distributed, was also an area some respondents said should be improved, both to build trust and ensure accuracy.

For example:

[…] Evidence suggests that the majority of the public are happy for their data to be used to improve outcomes for others if the information is understandable, data collection/storage/distribution processes are transparent, and there is a clear link to outcomes. […]

Another respondent said:

I would add that the accuracy of NHS data on patients is critical for research, and so I believe that when issues arise with data, such as a patient reporting an error in their medical record, that report should be dealt with promptly, and with transparency and openness.

Faster innovation, approval and adoption of new treatments

Some respondents highlighted that the slow pace of NICE approvals acts as a barrier to adopting new treatments and innovations and leaves England and the UK lagging behind other countries. They said this directly undermines the ability to get cutting-edge treatments to patients who desperately need them.

For example:

I feel the UK is being left behind with cancer treatments. I know of many patients going to Germany for treatments available there. There are so many new drugs in the pipeline and our hopes are being dashed when NICE reject new drugs that are available across the rest of Europe, Scotland, USA etc.

Some respondents said that to maximise the impact of advancements in cancer care, the government and NHS should overhaul and accelerate the approval process. They recommended streamlining these processes to ensure that new diagnostics and treatments, especially for rare and aggressive cancers, are adopted quickly.

Inequalities in access

Some respondents wanted to see targeted efforts to raise awareness of clinical trials, particularly within minority communities. Awareness of trials was said to be inconsistent, with many reporting they had never been made aware of clinical trials for their cancer. Some respondents suggested streamlining the enrolment process for eligible patients, embedding trials within cancer pathways and decentralising trials to reduce geographic barriers in access.

For example, one respondent said:

Ensure that all cancer patients are made aware of any trials that they may be eligible for. I had to constantly ask to be referred for the vaccine trial at a nearby centre as my hospital was not a centre running it. It being held in a different city did not stop me from getting involved. However, had I not seen that it was happening in BBC news I would not have known it existed.

Another commented:

There is no information freely available about clinical trials and their availability, the only way I found out about a trial was through my consultant and the amount of criteria that you have to meet to be accepted makes it really hard to access. It would be more helpful if there was a website detailing current available trials across the country and ways to apply.

And another said:

Clinical trial access is a lottery, often based on being located near a large teaching hospital. I’d like to see more trials run with affiliation to local [district general hospitals] and / or utilizing decentralised approaches.

Some respondents said that barriers that prevent patients from accessing the latest treatments, particularly those with rare cancers or from minority backgrounds, should be addressed. Some respondents felt that regulatory and funding frameworks should be overhauled to ensure that lifesaving, internationally available medicines are made available to patients in the UK.

Professionals and organisations

The analysis of text-based responses identified the following themes:

• data
• access to trials
• early diagnosis
• treatments
• rare cancers
• adoption of innovations
• governance
• living with and beyond cancer

Data

Professionals and organisations highlighted the need to improve access, collection and granularity of cancer data.

On data access, some respondents recommended establishing a single point of access and greater data linkage, as well as providing real-time access to relevant information, for example through a dedicated cancer branch of the Health Data Research Service (HDRS).

Regarding data collection, professionals and organisations highlighted the importance of improving data completeness and standardisation, alongside upgrading data infrastructure and ensuring better integration of systems. AI was suggested as a way to enhance data accuracy and completeness, and to identify priority areas for research.

Regarding data granularity, some respondents highlighted existing gaps around specific populations such as children and young people, inequalities, and clinical trials. They suggested better using existing data sets and expanding audits to further support cancer research and care.

Access to trials

Professionals and organisations highlighted the importance of decentralising clinical trials to address geographic barriers and improve access to trials. Many called for streamlining to recruitment and consent processes, as well as simplifying the set-up of trials to make it easier for both patients and staff to engage in research.

Others recommended embedding clinical trials into routine care to improve trial participation and consistency, thereby involving patients directly in the development of clinical trials.

Some respondents noted that limited workforce capacity continues to hinder research efforts. Some respondents emphasised the need for more staff and ringfenced time for research activities, alongside improvements to clinical infrastructure. They also advocated for greater international collaboration and favourable terms to attract foreign researchers.

Early diagnosis

Professionals and organisations highlighted the need to increase research into prevention and secondary prevention. Some suggested providing grants, funding, and incentives, and filling workforce gaps to support progress in this area.

Others called for the adoption of specific innovations, such as liquid biopsy and multi-cancer early detection (MCED) technologies, to advance cancer prevention and diagnosis. AI was also identified as a valuable tool to enhance the productivity and accuracy of diagnoses and one that some respondents thought could be more widely implemented.

Some respondents recommended further research into diagnostic methods and screening for particular cancer types, including breast, prostate, and cancers affecting children and young people.

Treatments

Respondents advocated for improvements to treatments, highlighting the need for kinder therapies with fewer, or no, long-term effects. They also called for wider adoption of personalised medicine approaches, including immunotherapies and cancer vaccines.

Many suggested this should be supported by increased funding for treatments and for research into new therapies.

Faster adoption was said to be hindered by lengthy and uneven process, with some respondents recommending cutting red tape and ensuring equal access. Others highlighted the importance of new innovations, such as AI to support specialist treatment and planning, and robot-assisted surgery to support treatment.

Some called for specific focus and research for particular cancers, such as brain, breast (lobular), leukaemia, and children and young people, which they said lagged behind in terms of advances in treatment.

Rare cancers

Professionals and organisations highlighted the need to focus research efforts on rarer cancers, which could be achieved through providing grants, funding, and incentives to encourage further study in this area. Specific cancers mentioned included lobular breast cancer, brain cancer, and gynaecological cancers, as well as cancers affecting children and young people.

Support for the Rare Cancers Bill was also shared by many respondents, with calls to implement and build upon its provisions.

Adoption of innovations

Professionals and organisations identified several barriers to innovation, the most frequently mentioned being bureaucracy, the attitudes of staff and a lack of prioritisation by trusts.

Some respondents suggested establishing a national framework to support implementation to address these barriers, alongside funding, staff training, and improvements to streamline evaluation and review processes.

AI was widely mentioned, with professionals and organisations advocating for wider implementation and integration within cancer pathways.

Governance

Professionals and organisations underscored the need for targeted research and innovation, specifically advocating for more dedicated studies into NHS England operations and an increased focus on rarer cancers. They emphasised the importance of improving patient access to clinical trials and accelerating the uptake of advanced diagnostic technologies. Enhancing data quality, access and governance was also identified as essential for supporting these efforts.

Calls were made for robust funding models and effective strategies to implement new innovations, alongside streamlining regulatory and approval processes. Some respondents recommended supporting international collaboration, strengthening UK research competitiveness, and ensuring priorities are guided by principles of equality and inclusion.

Living with and beyond cancer

Several gaps in research were highlighted by organisations and professionals, most notably on outcomes, quality of life and long-term side effects from treatment. With an increasing number of patients surviving and going on to live long lives following a cancer diagnosis, some respondents said this was an increasingly important area in need of more funding.

Specific areas of interest for research included:

• the long-term and late effects of cancer potential treatments
• survival and quality of life and the factors affecting these
• the impact of non-pharmacological treatments such as prehabilitation, rehabilitation and nutrition

Reducing inequalities in incidence and outcomes

Summary

In total, 15% of individuals and 34% of professionals and organisations said ‘reducing inequalities in cancer incidence, diagnosis and treatment’ was the most important priority for the National Cancer Plan.

Respondents were more likely to select this as a priority if they were:

• Black (43%), Mixed (31%) or Asian (30%), compared with White (15%)
• aged 16 to 24 (23%) or 25 to 34 (24%), compared to an overall average of 16%
• female (17%), compared to male (11%)
• living in London (22%), compared to the overall average (16%)

Table 16: responses to the question ‘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?’

Response	Individuals	Professionals	Organisations	All respondents
Improving earlier diagnosis of cancers across all groups	64%	47%	51%	63%
Raising awareness of the signs and symptoms of cancer, reducing barriers and supporting timely response to symptoms	56%	55%	48%	56%
Improving and achieving a more consistent experience across cancer referral, diagnosis, treatment and beyond	46%	50%	52%	47%
Improving the access to and quality of cancer treatment	40%	39%	42%	40%
Improving prevention and reducing the risk of cancer	37%	44%	37%	38%
Reducing inequalities in cancer screening uptake	21%	41%	29%	22%
Improving the aftercare support for cancer patients	18%	14%	16%	18%
I don’t know	2%	1%	0%	2%
Other	1%	2%	9%	1%

Selections from a preset list varied across respondent types:

• male respondents were more likely to prioritise reducing inequalities in early diagnosis, symptoms awareness and prevention, compared to female respondents who were more likely to prioritise consistent experience and aftercare
• older respondents (65 and over) were more likely to choose early diagnosis, while those aged 35 to 54 were more likely to prioritise aftercare
• ethnic minority respondents were more likely to choose inequalities in screening uptake, compared to White respondents

Collectively the most common issues and actions suggested by individuals, professionals and organisations were:

• reduce variation in access to diagnostic services, screening and primary care. Reduce delays in referrals for children, women and deprived communities
• targeted awareness for minority, underserved communities, and children and young people. Train professionals to spot signs and symptoms in later diagnosed groups and/or cancers
• improve experience and consistency through patient centred care and reducing variation in the availability of treatments both geographically and for different patient groups

Individuals sharing their personal views

The analysis of text-based responses identified the following themes:

• prevention and risk awareness
• early detection and diagnosis
• access and outcome inequalities
• patient experience and aftercare

Prevention and risk awareness

Individuals highlighted the importance of awareness of lifestyle-related risk factors in preventing cancer, particularly in lower socioeconomic populations where rates of smoking, obesity and other health risks tend to be higher. Some respondents suggested targeting interventions at ethnic minority and socioeconomically disadvantaged populations to increase awareness.

For example:

[…] there must be a stronger emphasis on prevention through nationwide campaigns promoting physical activity, healthy eating, and smoking cessation - addressing key lifestyle risk factors that disproportionately affect lower-income groups. […]

Early detection and diagnosis

Individuals stated that delays in diagnosis and low screening rates remain major barriers to catching cancer early, especially in ethnic minority communities. Some respondents said the government and NHS should make screening services easier to access, encourage uptake among vulnerable groups and train GPs to spot early warning signs in minority patients.

For example:

It is difficult to get people to take up screening if it is not the “done thing” in their culture or socio-economic group or they don’t understand the risks of not screening or benefits of screening[.] Having more community-based awareness campaigns that will resonate with cultures or socio-economic groups. Anything that will encourage more people to take up screening available. […]

Some respondents noted that targeted community-based approaches could build awareness and increase screening uptake.

For example:

[…] Local community groups need to be carefully considered. They are integral to the life force within specific communities. Working closely with community-based groups could have a huge influence of uptake of cancer screening.

Access and outcome inequalities

Some respondents stated that factors such as geography, ethnicity and socioeconomic status continue to heavily affect outcomes for cancer patients. They highlighted that regional disparities mean there is a ‘postcode lottery’ in treatment quality, waiting times and survival.

Some respondents also noted that barriers persist for ethnic minority and disadvantaged groups throughout each stage of the cancer pathway. They said that addressing inequalities was essential to creating a more effective cancer system.

For example:

[…] I would like to see measurable targets and key success indicators which can demonstrate overtime positive movement and change in the experience and outcomes for cancer prevention and early diagnosis for BAME communities. I would also recommend that overseeing the council plan are a diverse range of implementation advisory steering groups with a specific working group which is focused on health inequalities

Patient experience and aftercare

Some respondents highlighted the need for comprehensive and personalised care across the entire cancer pathway. Many patients, particularly women and those from marginalised backgrounds, felt unsupported or dismissed. Some respondents said that compassionate, person-centred approaches should be prioritised.

For example, one respondent said:

Improving access to and quality of cancer treatment, more importantly SPECIFIC treatment for varying cancers and not giving an ‘umbrella’ approach to treatment. The dismissive attitude to women seeking help and further investigation when presented with symptoms to be told they are suffering with ‘disease anxiety’ or ‘it’s quite common’ - does not [fulfil] the worry or give sufficient explanation for symptoms. […]

Another respondent said:

Too many doctors are dismissive of cancer symptoms in young people. This needs to change as it’s leading to unnecessary deaths and more cancers are being seen in people younger than expected. It’s simply negligent and negates all the awareness work.

Some respondents also called for robust mental health support following diagnosis and treatment, and consistent and comprehensive aftercare once treatment ended. Some respondents shared their experiences of feeling lost following treatment and the anxiety caused by the possibility of their cancer recurring.

For example, one respondent said:

When you have finished treatment I found that is when I struggled most mentally but that is when you have the least support and access to nurses and drs. The aftercare is essentially look for signs of it coming back and contact us if you spot anything.

Another respondent said:

[…] Life after cancer treatment is terrifying and one feels so alone and with after treatment side effects are so worrying and uncertainty its imperative that help is there. […]

And another respondent shared:

Aftercare is non-existent. Left to rot. You go through years of chemo, surgery, radiotherapy, Monocolonal antibodies and then end of treatment plan that is it. No further checks on heart or lungs, no checks to see if any cancer. Nothing. Just a mammo on the remaining breast once a year. […] Thankfully I have a lovely GP who said they’re letting me down at hospital so they do breast and lymph checks for me.

Professionals and organisations

The analysis of text-based responses identified the following themes:

• prevention
• early diagnosis
• screening
• treatment
• aftercare
• community

Prevention

Many professionals and organisations emphasised the importance of targeted education on cancer risk factors, recommending that information be directed toward high-risk groups. They called for greater public health messaging, for example through television advertisements and education programmes in schools.

Some organisations and professionals noted that unequal exposure to carcinogens arises from genetics, geographical location, lifestyle factors prevalent in disadvantaged communities, and occupational hazards. They called for initiatives to increase awareness of these factors, as well as wider use of data and genomics to inform prevention strategies and inform on individual risk.

Some professionals and organisations highlighted the need for community-level interventions, adapted to the specific needs and cultures of each community. Some respondents encouraged partnerships with local organisations and pharmacies to maximise engagement and reach.

There was wide support for existing interventions, with many respondents calling for further support and investment for cessation services, interventions to increase uptake of the human papillomavirus (HPV) vaccine and expanding education about healthy diet and exercise.

Early diagnosis

Some professionals and organisations emphasised the importance of raising awareness of cancer signs and symptoms within groups such as ethnic minorities, people living in deprived areas, children and young people and other groups at risk of late diagnosis or emergency presentation.

Many suggested increasing professionals’ awareness of signs and symptoms, particularly among primary care providers. This could be achieved through targeted training and ongoing education to help professionals recognise early warning signs of cancer. Standardised referral forms could also reduce variation in the quality of referrals.

Some respondents highlighted the importance of improving access to primary care appointments and diagnostic tests which are also subject to geographic variation. Improvements such as reducing travel, providing a wider range of appointment times, and addressing language barriers were suggested, along with increases in primary care and diagnostic capacity.

New technologies and innovations were mentioned by some respondents, for example AI, and multi-cancer detection tests which respondents wanted to see rolled out more widely. Others supported increasing research into the detection of rarer cancers, many of which have no specific test, to improve early diagnosis across all cancers.

Screening

Many professionals and organisations highlighted barriers individuals face in accessing cancer screening services, particularly for those with disabilities or who face long travel distances. Working hours, cultural beliefs and a general lack of awareness about the importance of screening were all also cited as barriers to uptake in need of addressing.

Many respondents recommended expanding existing screening services and reducing the minimum screening age to avoid patients being missed due to age cutoffs. Other suggested introducing new screening programmes for specific cancers, for example prostate, and innovative approaches, such as HPV self-sampling, and the use of ultrasounds for breast cancer detection.

Some professionals and organisations suggested pop-up screening services should be made available in easily accessible community locations, including faith centres and local pharmacies, and mobile screening units. These interventions should be specifically targeted at deprived areas and ethnic minority communities to improve both uptake and access to screening.

Treatment

Geographic variation in access to genomics, specialist treatments and care for specific cancers, particularly for children and young people, was mentioned by many professionals and organisations. Other barriers were also highlighted, such as travel distances, language and learning challenges, disabilities, inflexible work schedules, primary care issues and co-morbidities.

Some organisations and professional suggested a range of interventions to address these barriers such as travel subsidies, community-based rehabilitation, better staff training, and bringing treatment closer to patients through local initiatives.

Other respondents pointed to the importance of faster diagnosis in speeding up access to treatment. They recommended improving diagnostic services in primary care and genomics to reduce time to treatment.

Some professionals and organisations emphasised the need for consistent access to new treatments and innovations. Improvements to governance were highlighted as a route to achieve this with specific suggestions including streamlined approval pathways, system reform, and enhanced data quality and use.

Aftercare

Many professionals and organisations highlighted inconsistency and inadequacy in aftercare provision, noting significant variation between groups and across different regions. Involving families and carers was said to be essential to effective aftercare, along with the support of staff to help patients navigate and access the appropriate care.

A range of support was recommended, including mental health services for all age groups, financial assistance post-treatment and social support within clinical settings. Targeted support for specific patient groups was suggested to address issues such as side effects experienced by women, older adults or those less likely to access support services.

Community

Some professionals and organisations emphasised the need to build trust and proactively reach out to communities less likely to engage with the healthcare system. They underscored the significance of active community outreach and the involvement of communities and local organisations to inform, engage and educate.

Some respondents highlighted the importance of tailored interventions and provided recommendations to adapt approaches to local areas or specific patient groups, including the development of local initiatives. Using local healthcare professionals, such as pharmacists and health and wellbeing coaches, was identified as an effective strategy to engage communities, build trust and disseminate information.

Next steps

The comments and results from analysis of the call for evidence have been taken into consideration during the development of the National Cancer Plan.

The National Cancer Plan for England was published along with the results of this analysis on 4 February 2026.

The actions in the plan will be implemented over the next 10 years and we will report annually on progress.