Call for evidence outcome

Results of the 10-Year Cancer Plan call for evidence

Updated 17 May 2023

This report contains content that some readers may find upsetting, including anonymised, personal testimonies of living with cancer and bereavement.

Executive summary

In February 2022, the then Secretary of State for Health and Social Care launched a call for evidence to inform the development of a 10-Year Cancer Plan for England.

We received 5,557 responses which were eligible for inclusion in our analysis:

• 4,822 were from individuals who live in England and wanted to share their personal experiences

• 735 were from professionals or organisations who operate in England or across the UK

The call for evidence was structured around a range of topics with a mixture of multiple-choice questions and free text boxes where people could give their views. Respondents were asked to select which priorities should be included in the 10-Year Cancer Plan and were able to select more than one priority.

Raising awareness of the causes of cancer

55% of individuals and 50% of professionals and organisations said that raising awareness of the causes of cancer and how it can be prevented should be prioritised over the next decade.

Collectively, the most common suggestions put forward to achieve this ambition were:

• health promotion campaigns that are educational, focus on risk reduction, include stories from real people, and move away from attributing guilt and blame

• using a mix of traditional and social media, as well as in-person campaigns, to raise awareness and reach different groups and communities

• ensuring better linkage in messaging across primary and secondary care, and beyond the healthcare system, especially with schools and education providers

Some also pointed out that not all cancers are preventable, and greater investment in research is needed to better understand the impact of, for example, genetic and environmental factors.

Spotting the signs and symptoms of cancer

73% of individuals and 56% of professionals and organisations said that raising awareness of the signs and symptoms of cancer should be prioritised over the next decade.

Only 39% of individuals said they have access to sufficient information on cancer signs and symptoms. Overall, individuals were most likely to rely on their GP (80%), the NHS website (75%) and/or a cancer charity (61%) for information on the signs and symptoms of cancer. However, this varied by demographic, suggesting that campaigns need to be delivered in a range of formats to maximise reach across population groups.

Collectively, the most common suggestions individuals, professionals and organisations put forward to raise awareness were:

• ensuring campaigns go beyond the 4 most prevalent types of cancer in England to cover cancers that tend to be diagnosed at a late stage, have ‘non-specific’ symptoms that can be mistaken for other conditions, and/or have poorer survival outcomes, and encouraging people to step forward if something does not ‘feel right’

• making greater use of mixed media campaigns, covering social, digital, and offline media, and targeting specific groups as appropriate

• improving the training of primary healthcare professionals (particularly GPs) and increasing knowledge sharing across the system – from nurses, dentists, opticians, and physiotherapists, to cancer charities and community cancer champions

In addition, professionals and organisations suggested evaluating and learning from the effectiveness of previous campaigns, as well as using ‘big data’ to identify high-risk groups.

Getting more people diagnosed quicker

90% of individuals said that ‘getting more people diagnosed quicker’ should be prioritised over the next decade, compared to 74% of organisations and professionals.

Collectively, the most common suggestions they put forward to achieve this ambition were:

• raising public awareness of cancer symptoms and reducing the fear associated with receiving a cancer diagnosis, which can deter people from seeking help

• funding to expand the GP workforce and tackle geographic disparities, ensuring more people get seen sooner

• training for GPs to recognise a wider range of symptoms (including in children), better listen to patient concerns and act sooner (moving away from a culture of ‘watch and wait’)

• expanding diagnostic pathways, including through greater use of self-referral, at-home tests, community and mobile centres

• investing in genetic research and digital technologies (such as virtual screening)

Improving access to and experiences of cancer treatment

72% of individuals, organisations and professionals said that ‘improving access and experiences of cancer treatment’ should be prioritised over the next decade.

Collectively, the most common suggestions they put forward to achieve this priority were:

• minimising the gap between getting diagnosed and starting treatment, as this can impact treatment options available to patients and their prognosis

• reducing geographical disparities in access to cancer care

• improving treatment spaces and wards, including children’s wards and the facilities available to their parents or carers

• investing in the NHS cancer workforce, in particular clinical nurse specialists who can act as a single point of contact for patients

• improved communication with patients to ensure they have all the information they need, and that it is delivered in a considerate way

In addition, organisations and professionals proposed several system-level improvements, including greater integration of, and sharing of, information across services, learning from the fast deployment of digital solutions to tackle the (coronavirus) COVID-19 pandemic, and ensuring people with different characteristics are better represented in clinical trials and research.

Improving after-care and end-of-life care

64% of individuals and 66% of professionals and organisations said that ‘improving after-care and support services for cancer patients and their families’ should be prioritised over the next decade.

Collectively, the most common suggestions put forward to achieve this ambition were:

• increased funding for specialist nurses to act as the central point of contact for patients and their families, as well as increased funding for hospice services and charities who provide palliative and end-of-life care

• providing more comprehensive, integrated and personalised support after an individual receives a cancer diagnosis and (where applicable) after finishing their cancer treatment

• improved emotional, mental health, and practical support for patients, as well as their partners, children, family members and carers

• targeted support for specific groups, such as ethnic minority cancer patients, bereaved relatives, and children and young people living with and beyond cancer

Maximising the impact of research and data

We asked respondents for suggestions to maximise the impact of research and data on cancer services and outcomes in England.

Collectively, the most common suggestions put forward were:

• to increase funding across a variety of cancer research needs, and funding for clinical and research staff to conduct the research

• to improve cancer patients’ access to clinical trials, and ensure that research and trials involve people with different protected characteristics

• more collaborative research and sharing of best practice and lessons learned across trusts, patient groups, cancer alliances, organisations and countries

In addition, organisations and professionals called for improvements to existing data collections and structures, emphasising the need for accurate, standardised national data on cancer patients.

Introduction

In February 2022, the then Secretary of State for Health and Social Care launched a call for evidence to inform the development of a 10-Year Cancer Plan for England.

It was open to members of the public wishing to share their views and experiences, as well as those responding in a professional capacity and on behalf of an organisation.

Our approach to analysing 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:

• raising awareness of the causes of cancer

• spotting the signs and symptoms of cancer

• getting more people diagnosed quicker

• improving access to and experiences of cancer treatment

• improving after-care and end-of-life care

• maximising the impact of research and data

A glossary of medical and other key terms referred to in our analysis is included at the end of this report.

All data tables are available in the survey data spreadsheet.

Methodology

In this section we provide an overview of the ways in which individuals, professionals and organisations could respond to our call for evidence, how we processed and analysed the data, and points to consider when interpreting the results.

Format

The call for evidence was open for 9 weeks, launching on 2 February and closing on 8 April 2022. We received 6,016 responses in total.

Everyone could respond to the call for evidence through a survey hosted on GOV.UK. An easy read version of the survey was also available for individuals sharing their personal experiences, and this could be completed online or printed and submitted by email or post.

Data cleaning

In the UK, the National Health Service (NHS) is the umbrella term for the 4 health systems of England, Scotland, Wales and Northern Ireland. Because healthcare is devolved, the survey was therefore only open to individuals aged 16 and over who live in England, and professionals and organisations who offer services in England. This meant that 396 responses were not eligible for inclusion in our analysis. A further 63 responses were removed because they were duplicates (some organisations had submitted multiple copies of their response). This left us with a total sample of 5,557 responses for our analysis (Table 1).

Table 1: type of respondent

Response	Frequency	Percentage
Individual sharing personal views and experiences (and lives in England)	4,822	87%
Individual sharing professional views or responding on behalf of an organisation (operates in England or across the UK)	735	13%
Total	5,557	100%

Analysis

The survey included closed, tick-box-style questions, as well as open-ended questions where respondents could write detailed comments.

To ensure the insights provided by professionals and organisations were given equal weight to those provided by individuals sharing their personal experiences, we analysed their comments separately.

For the comments left by individuals, we had a sufficient sample to use a topic modelling and tagging system in a software package called R. This identified common word clusters, which at least 2 analysts then reviewed alongside a sample of representative quotes, to determine an appropriate label for each theme.

The volume of comments left by professionals and organisations was too small to use a topic modelling system. Instead, analysts reviewed each response and manually logged key findings into a standardised template, enabling us to identify themes across responses and understand which were the most common.

Quotes from respondents

Throughout this report, we quote a selection of anonymised comments that represent and give further insight into the themes that emerged from our analysis. Where comments have been shortened, the omitted text is represented by an ellipsis in square brackets “[…]” – care was taken to ensure this did not misrepresent what the respondent told us or their tone of voice. Spelling and grammar errors have been corrected where the intended word or words in question were obvious – where this involved modifying words, this is indicated by square brackets. No other changes have been made.

Caveats

When reading this report, it is important to note the following caveats:

• the results are only representative of those who responded to our call for evidence and cannot be taken to represent the views of all individuals, professionals and organisations – it may be the case, for example, that people who have had very poor experiences of care were more likely to respond to the survey to have their voices heard (further information on respondent characteristics is covered in the next section)

• where respondents have made factual statements – for example, about national guidelines – we have tried to independently verify the accuracy of these points; however, it is possible that there may be alternative sources of information which show a different picture

• the suggestions and recommendations in this report represent the views of those who responded to our call for evidence – we recognise there may be alternative views on specific issues, and the inclusion of these does not mean they follow clinical guidelines, or are endorsed or accepted by the Department of Health and Social Care (DHSC), NHS England (NHSE) or government

Detailed information on the NHS Long Term Plan and commitments for cancer can be found on the NHS England website.

Respondent characteristics

In this section we provide further information on the characteristics of individuals, professionals and organisations who responded to our call for evidence.

Individuals

Most individuals sharing their personal views and experiences belonged to one or more of the following groups:

• from a white ethnic background (93%)

• aged 35 to 74 (83%)

• not disabled (80%)

• female (77%)

• educated to degree level or above (58%)

Half of the individuals who responded had also received cancer treatment.

These breakdowns are discussed in more detail below. Where data is available, we compare the characteristics of respondents to the proportion of people with these characteristics in the wider population. This can help us understand how representative the views and experiences shared are likely to be.

Age

83% of individuals were aged 35 to 74 (Table 2). All other age groups, especially those aged 16 to 34, were under-represented in our sample relative to the wider population.

Table 2: age of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (ONS mid-year estimates, 2020)
16 to 24	79	2%	13%
25 to 34	306	6%	17%
35 to 44	669	14%	16%
45 to 54	1067	22%	16%
55 to 64	1315	27%	15%
65 to 74	968	20%	12%
75 or above	359	7%	11%
Prefer not to say	59	1%	Not applicable

Ethnicity

93% of individuals told us they belong to a white ethnic group, while 6% were from an ethnic minority background (Table 3). Those from an Asian or Asian British background were most under-represented in our sample.

Table 3: ethnicity of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (ONS estimates, 2019)
White	4,468	93%	87%
Asian or British Asian	92	2%	7%
Black or African or Caribbean or black British	94	2%	3%
Mixed or multiple ethnic groups	52	1%	1%
Other ethnic group not listed	37	1%	2%
Prefer not to say	79	2%	Not applicable

Sex and gender identity

77% of individuals sharing their personal experiences were female and therefore over-represented in our sample, while 22% were male and under-represented relative to the wider population (Table 4).

Table 4: sex of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (ONS mid-year estimates, 2020)
Female	3,711	77%	51%
Male	1,069	22%	49%
Prefer not to say	42	1%	Not applicable

Nearly all respondents (99%) also told us their gender identity matches their sex at birth (Table 5).

Table 5: gender identity of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents
Gender identity same as sex registered at birth	4,530	99%
Gender identity different to sex registered at birth	13	0.3%
Prefer not to say	38	0.8%

Note: this table excludes individuals who completed the easy read version of our survey, as they were not asked for data on their gender identity. At the time of publication, population estimates are not available for comparison.

Disability

19% of individuals sharing their personal experiences told us that they have a disability. Compared to larger scale health surveys, this group is likely to have been under-represented in our sample (Table 6).

Table 6: disability status of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Percentage of population with characteristic (GP Patient Survey, 2021)
Has a disability	903	19%	52%
No disability	3,877	80%	45%
Prefer not to say	42	1%	3%

Highest level of qualification

Compared to the general population, people without any formal qualifications or qualifications below degree level were under-represented in the responses we received. Highest level of qualification is often used as a proxy for socio-economic group, which is how it has been interpreted in this report.

Table 7: highest level of qualification held by individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Estimated percentage of population with this characteristic (ONS Annual Population Survey 2021)
Degree level qualification or above	2,818	58%	43%
Qualifications below degree level	1,643	34%	61%
No formal qualifications	186	4%	6%
Don’t know	19	0.4%	Not applicable
Prefer not to say	156	3%	Not applicable

Experiences of cancer treatment

Around half of our respondents said they have undergone cancer treatment. This includes 1,388 people who said they received at least some of their cancer treatment during the COVID-19 pandemic, representing approximately 0.2% of the 640,000 estimated to have started cancer treatment since March 2020 (NHSE Official Statistics, Cancer Wait Times, April 2022).

Table 8: direct cancer experience of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents
Received cancer treatment and at least some occurred during the pandemic period (since March 2020)	1,388	29%
Received cancer treatment and all completed before the pandemic (before March 2020)	1,000	21%
Not received cancer treatment	2,378	49%
Prefer not to say	56	1%

Location in England

People from the South East and South West of England were over-represented in the responses we received. People from London were the most under-represented.

Table 9: location in England of individuals sharing their personal experiences

Group	Number of individual respondents	Percentage of individual respondents	Estimated percentage of population with this characteristic
London	457	9%	16%
East Midlands	411	9%	9%
East of England	442	9%	11%
North East England	202	4%	5%
North West England	629	13%	13%
South East England	1,193	25%	16%
South West England	671	14%	10%
West Midlands	380	8%	10%
Yorkshire and the Humber	381	8%	10%
Prefer not to say	56	1%	Not applicable

Organisations and professionals

Of those who told us they were sharing their professional views or responding on behalf of an organisation:

• 58% were self-identified healthcare professionals

• 11% represented a third sector organisation

• 7% represented a cancer support organisation or group

We also received responses from the pharmaceutical industry, academia, the NHS, independent healthcare providers, cancer alliances and Royal Colleges (Table 10).

Table 10: types of professional and organisational respondents

Group	Number of respondents	Percentage of professional or organisational respondents
As a healthcare professional	425	58%
On behalf of a third sector organisation	78	11%
On behalf of a cancer support organisation or group	52	7%
As an academic, researcher or on behalf of a university	37	5%
As a pharmaceutical industry professional or company	36	5%
On behalf of an NHS organisation or social care provider	14	2%
On behalf of an independent health or social care provider	13	2%
On behalf of a cancer alliance	13	2%
On behalf of a Royal College	10	1%
Other (not listed)	55	8%

Raising awareness of the causes of cancer

Summary

55% of individuals and 50% of professionals and organisations said that raising awareness of the causes of cancer and how it can be prevented should be prioritised over the next decade.

Collectively, the most common suggestions put forward to achieve this ambition were:

• health promotion campaigns that are educational, focus on risk reduction, include stories from real people, and move away from attributing guilt and blame

• using a mix of traditional and social media, as well as in-person campaigns, to raise awareness and reach different groups and communities

• ensuring better linkage in messaging across primary and secondary care, and beyond the healthcare system, especially with schools and education providers

Some also pointed out that not all cancers are preventable, and greater investment in research is needed to better understand the impact of, for example, genetic and environmental factors.

Insights from individuals

Prioritisation

55% of individuals said that ‘raising awareness of the causes of cancer and how it can be prevented’ should be prioritised over the next decade.

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

• from a black (78%), Asian (70%), mixed (62%) or other (59%) ethnic background, compared to white respondents (54%)

• without a formal qualification (61%, compared to 52% of those with a degree level or above qualification)

• male (60%, compared to 53% of female respondents)

• aged 65 to 74 (60%, compared to 39% of those aged 16 to 24)

• live in the North East of England (60%, compared to 51% in the East Midlands)

We also found that respondents were more likely to select ‘raising awareness of the causes of cancer’ if they had not previously undergone cancer treatment (58%, compared to 51% who have).

Experiences and suggestions

As a general point, some respondents pointed out that not all cancers are preventable, and so cancer prevention initiatives must only be part of the suite of actions taken forward.

To raise awareness of the causes of cancer and how some can be prevented, individuals suggested:

• rolling out health promotion campaigns in a range of formats

• raising awareness among children and young people, to ensure they lead healthier lifestyles as they age

These are discussed in turn, below.

Health promotion campaigns

Style of campaign

Rather than taking a one-size-fits-all approach, individuals suggested that campaigns should be rolled out in different formats to maximise the reach of key messages.

Traditional media, such as newspapers, posters, and television adverts were identified as important to reach digitally excluded groups, such as the elderly. However, it was also felt that their impact is currently limited by not being provided in a range of different languages.

For example:

In my experience, ethnic minorities living in deprived areas, particularly the older age group do not use the internet as they don’t speak English. To raise awareness in these groups, information needs to be printed and posted to them in different languages. British media can also be used there are channels via Sky, for example Asian channels which have large audiences and a big reach.

I live in a fairly large Asian community in Birmingham. It’s difficult for community members to understand information via TV/poster adverts because these will usually be in English and for the majority of the community English is not the first language. Perhaps promote more awareness of the causes of cancer via other languages such as Urdu, Somalian, Bengali.

Social media was identified as a good option for reaching younger age groups and keeping the public up to date on new research findings, as long as the source can be verified as trustworthy.

For example:

I think a lot of awareness is down to the general public sharing things on social media especially for the younger generation and I think cancer patients sharing their stories really make people aware of the reality of cancer.

Use social media in a more dynamic and engaging way: there is so much misinformation, many patients would use Google and that is not always beneficial. Communicate existing studies in this field in ways that can be understood by a broader audience and that are engaging and clear.

Content and messaging

Respondents felt that cancer prevention campaigns should focus on the scientifically proven links between unhealthy lifestyles and different types of cancer, particularly high levels of alcohol consumption and highly processed foods.

For example:

I think TV ads highlighting stark statistics (for example, the annual number of UK breast cancer cases thought to be related to alcohol) would have [an] impact on behaviour and would probably have convinced me to reduce my intake if I had known. Few members of the public understand what the liver does, but most women worry about breast cancer.

Greater promotions of the risks of what you eat being a contributory factor on prevalence of cancer. […]

They also suggested that including patient stories within campaign messaging would be an effective way of driving home the message about the causes of cancer – allowing members of the public to see someone ‘like them’, which in turn could influence them to change their behaviour.

For example:

[…] work with actual patients and get them to describe their experience, warts and all. […] We need real stories from real people if we don’t get rid of the taboos about talking about cancer […] we can’t do the awareness raising that is needed.

Children and young people

A large proportion of responses noted that there is not enough education on cancer, particularly the causes of cancer, in schools or educational settings for young people.

Respondents said this was crucial to enable children to make healthier lifestyle choices as they get older:

Teach children at secondary school what is known about risk factors that could cause cancer, which lifestyle choices that are known to increase your chances of being affected by cancer, what to avoid and look out for as they go ahead with their career.

Through science lessons at school and through parents before they give birth. My melanoma was probably caused during my childhood, despite educated careful parents. Children need to understand the dangers before damage is done.

Some respondents highlighted that interventions or support are largely targeted at those children who are at risk, but that anyone can develop cancer and so information sharing should be aimed at everyone from a young age:

[…] My son had a letter home offering support with diet/weight. He does not visibly appear obese, but his BMI indicated he should be cautious. My concern with this was that only children with a high BMI were offered any support. We all know you can have a low BMI but be desperately unhealthy. It is not the only indicator and even if your BMI is low in school, that doesn’t mean it will remain that way for life. I think teaching about health and life skills from an early age is a good place to start.

Others felt that more innovative methods of outreach would be likely to get through to young people, such as awareness sessions or specific targeting at events like festivals:

School sessions raising awareness of the most common cancers to affect young people breast, testicular, bowel, brain. Health awareness sessions that young people can take back to parents/grandparents re prostate, pancreatic, skin cancers. What risk factors are using modern research as we know so much more than we currently communicate. Putting awareness sessions on in communities, particularly hard to reach communities. […]

Better health and wellbeing education at school so young people understand how lifestyle can increase the likelihood of serious illness including cancer. Work with younger adults at college and university. Have ‘popup’ health promotion campaigns at events like festivals.

Insights from professionals and organisations

Prioritisation

50% of professionals and organisations said that ‘raising awareness of the causes of cancer and how it can be prevented’ should be prioritised over the next decade.

Suggestions

Many of the suggestions put forward by professionals and organisations echoed those put forward by individuals sharing their personal experiences.

These mainly centred around:

• educating the public on the impact of different types of risky behaviours and lifestyle choices, but in a way that avoids guilt and blame

• delivering campaigns in different formats, and tailoring messaging (where appropriate) to reach individuals with different characteristics

• linking with other parts of the system and investment in research

These are discussed in turn, below.

Risky behaviours

Many professionals and organisations called for national campaigns to raise awareness of the links between cancer and diet, tobacco, alcohol and sunbeds.

On diet, they suggested that there is a need to promote healthier lifestyle choices and ensure that it is affordable and accessible to all. Suggestions for achieving this included discounted gym memberships, exercise or wellbeing-based events, workplace incentives, cooking or nutrition classes. They also suggested that there should be more content on nutrition, and the links between cancer and obesity, in schools, higher education settings and GP surgeries.

On tobacco, they suggested that national stop smoking campaigns should be coupled with targeted messaging aimed at lower socioeconomic groups, hospitality workers and ethnic minority groups. They also emphasised that campaign messaging needs to be accompanied by practical support to help individuals stop smoking and using tobacco products.

On alcohol, some felt that we need a comprehensive alcohol strategy aimed at reducing drinking across the country, with specific goals focused on tackling health inequalities, introducing a minimum unit pricing strategy for alcohol, and increasing participation in events such as ‘dry January’.

On tanning, a smaller number of organisations and professionals suggested that the government should legislate against the use of sunbeds given the clear links between sunbed usage and cancer. More broadly, they suggested more needs to be done to promote the uptake of sun protection, and to explore the provision of sunscreen dispensers in schools to give greater encouragement to children and young people.

Across all these areas, most organisations and professionals suggested that reducing blame and making campaigns less aggressive may encourage more people to come forward and discuss these issues. Focusing on prevention can sometimes place the burden on the patient; focusing instead on risk reduction may prevent this and remove some of the blame. Awareness of the causes of cancer could also focus on the role of genetics, as well as just on individuals’ actions, and for childhood cancers, the actions of the child are not the cause so blame or aggressive campaigns should not be used.

Delivering campaigns

There was a huge focus in responses from organisations on the use of the media in raising awareness of cancer and how it can be prevented. Social media can be used to increase awareness about any abnormal health issues; this can be done through targeted ads on platforms such as YouTube or Instagram, or through use of celebrities to increase awareness and encourage people to check for symptoms. TV and radio could run informational adverts at peak viewing or listening times which educate people about the causes of cancer and how to check for symptoms. The use of real patient stories is important, as is incorporating cancer into storylines of TV programmes.

Community spaces were suggested as an important place to target messaging around cancer. Individuals in communities, such as faith leaders and community champions, can help to run effective local campaigns based on local demographics. Outreach in local communities could include vaccination drop-in clinics and visits from healthcare professionals who are able to share their knowledge in community settings, engaging with groups that are usually harder to reach. Organisations suggested that campaigns aimed at raising awareness of cancer will have a greater impact on changing behaviours at a community level if campaigns are physical, not just digital. This could include direct household leaflet campaigns or engaging people through posters or stalls in gyms, churches and other community areas.

Targeting patients with different characteristics

Organisations and professionals raised the point that cancer can affect different groups of society differently and therefore prevention services and awareness campaigns need to be tailored to patients with different characteristics to ensure that all those affected are aware of the causes of cancer, ways to reduce their risk and cancer services available.

For example:

• children and young people: the main suggestions were:

  • adding cancer to the school curriculum

  • encouraging young people to go for regular checks

  • cookery classes to teach students about nutrition and the importance of healthy eating

  • removing carcinogenic foods from school canteens

• people in deprived areas and from lower socio-economic groups: suggestions included:

  • greater face-to-face engagement to overcome digital poverty

  • ensuring GP and dental services are easily accessible and affordable

  • ensuring that healthy food is an affordable and available option

• ethnic minority groups: suggestions included:

  • working with faith centres, training community cancer champions

  • ensuring information campaigns are provided in different languages

• transgender and non-binary people: organisations flagged that transgender and non-binary people with a cervix are significantly less likely to attend cervical screenings than others – it is therefore important that cancer prevention campaigns avoid alienating these groups, and that health professionals clearly communicate how gender affirmation surgeries may not remove risks of certain cancers

• neurodiverse groups: organisations said that current messaging and campaigns about cancer can sometimes be too complex for those with lower reading ages and learning disabilities, therefore it is important to use simple, everyday language so that information around the prevention and causes of cancer is accessible to everyone

Linking with other parts of the system

Organisations and professionals highlighted that a whole-system approach is needed, which includes investment in further research and linking activities across the healthcare system. Examples included:

• strengthening the links between primary and secondary care, with pharmacists and dentists having a role to play in preventative health checks and providing advice about risky behaviours such as sun protection and smoking

• research to better understand the role of environmental factors, endocrine-disrupting chemicals and genetic factors in causing cancer, and to evaluate effective methods of raising awareness that translate into behavioural change

Spotting the signs and symptoms of cancer

Summary

73% of individuals and 56% of professionals and organisations said that raising awareness of the signs and symptoms of cancer should be prioritised over the next decade.

Only 39% of individuals said they have access to sufficient information on cancer signs and symptoms, and this was much lower for respondents from an ethnic minority background (25%). Overall, individuals were most likely to rely on their GP (80%), NHS website (75%), or a cancer charity (61%) for this type of information, but this varied by demographic – suggesting campaigns need to be delivered in a range of formats to maximise reach across population groups.

Collectively, the most common suggestions individuals, professionals and organisations put forward to raise awareness were:

• adapting campaign messaging to cover less well-known symptoms and rarer cancers (such as pancreatic cancer), and encouraging people to step forward if something does not feel right

• making greater use of mixed media campaigns, covering social, digital, and offline media, and targeting specific groups as appropriate

• improving the training of primary healthcare professionals (particularly GPs) and increasing knowledge sharing across the system (from nurses, dentists, opticians, and physiotherapists, to cancer charities and community cancer champions)

In addition, professionals and organisations suggested evaluating the effectiveness of previous campaigns and maximising the use of ‘big data’ to identify high-risk groups.

Insights from individuals

Prioritisation

73% of individuals said that ‘raising awareness of the signs and symptoms of cancer’ should be prioritised over the next decade.

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

• male (78%, compared to 72% of female respondents)

• belong to the ‘other’ (89%) or mixed (81%) ethnic group, compared to those identifying as white (73%)

• aged 75 or above (79%, compared to 67% of those aged 35 to 44)

• without any formal qualifications (78%) or below degree level qualifications (77%), compared to those with a degree level qualification or above (70%)

Individuals who had not received cancer treatment were more likely to select this as a priority (75%, compared to 71% of those who had undergone treatment).

Access to information

Overall, 2 in 5 respondents (39%) said they believe they have enough information to identify the signs and symptoms of different types of cancer.

This result did vary according to respondents’ personal characteristics:

• ethnic minority respondents were less likely to agree than white respondents (25% compared to 40%)

• younger respondents aged 25 to 34 were the least likely to agree, while older respondents aged 75 or over were the most likely (32% compared to 46%)

• male respondents were less likely to agree than female respondents (34% compared to 40%)

• respondents with no disability were less likely to agree than respondents with a disability (38% compared to 43%)

• respondents with degree level or below degree level qualifications were less likely to agree (40% and 38% respectively), compared to respondents with no formal qualifications (45%)

Sources of information

Respondents were asked to select the sources of information they would rely on for information on the signs and symptoms of cancer.

‘My GP’ was the most selected overall (80%), followed by the NHS website (75%), and ‘a cancer charity or organisation’ (61%) (Table 11). Social media and television or radio were the least selected (7% and 3% respectively).

Table 11: sources of information on the signs and symptoms of cancer, which individuals said they would rely on (multiple choice allowed)

Response	Frequency	Proportion
My GP	3,842	80%
NHS website	3,614	75%
A cancer charity or organisation	2,939	61%
Online (for example, Google search)	2,944	61%
Hospital	1,337	28%
Academic or medical articles	1,087	23%
My family or partner	1,011	21%
My friends	570	12%
NHS 111 (non-emergency telephone line)	574	12%
Social media (for example, Facebook, Twitter, Instagram, YouTube)	335	7%
Television or radio	142	3%
Other (please specify)	52	1%

Below, we highlight some interesting differences between demographic groups.

By age:

• reliance on ‘my GP’ for information increased with age, ranging from 63% of 16 to 24 year olds to 86% of those aged 75 or above

• those aged 16 to 44 were more likely to pick the NHS website as their number one source of information, rather than their GP

• reliance on the internet (for example, Google search) featured in the top 3 sources for those aged 16 to 44, rather than a cancer charity or organisation

• reliance on social media was much more prevalent in the 16 to 24 year old age group (17%, falling to 3% of those aged 65 to 74)

By ethnicity:

• those in the white ethnic group had ‘a cancer charity or organisation’ in their top three sources, while all other ethnic groups had the internet (for example, Google search)

• black respondents were more than twice as likely than white respondents to select social media (18% compared to 7%)

• white respondents were less likely to rely on their friends or family members, compared to all other ethnic groups

By sex:

• female respondents were more reliant on digital forms of information, with more selecting the NHS website, an internet search, and social media, than male respondents

By disability status:

• reliance on the internet (for example, Google search) featured in the top 3 sources for those without a disability, rather than a cancer charity or organisation

• those with a disability were more likely to rely on a hospital for information (37%), compared to those without (26%)

By education level:

• those with no formal qualifications were less likely to rely on a cancer charity or organisation (32%), compared to those with a below degree level qualification (55%) or degree level or above education (67%)

• those with no formal qualifications were less likely to rely on an internet search (35%), compared to those with a below degree level qualification (57%) or degree level or above education (66%)

• those with no formal qualifications were less likely to rely on academic or medical articles (6%), compared to those with a below degree level qualification (14%) or degree level or above education (29%)

By region:

• reliance on a cancer charity or organisation ranged from 65% in the East of England, to 53% in the North East of England

Experiences and suggestions

Individuals put forward a range of suggestions to increase awareness of the signs and symptoms of cancer among the public and healthcare professionals.

These broadly fell into 3 overarching categories:

• delivering campaigns in a range of formats, with a particular emphasis on social and digital media, and targeting young people

• improved campaign messaging to help people understand what is normal or abnormal for their body, and when to seek help

• improved training for healthcare professionals, particularly GPs

These suggestions are discussed, in turn, below.

Campaign formats

Many respondents felt that the internet could be better utilised to raise awareness of the signs and symptoms of cancer across a wide range of individuals, in particular social media channels and campaigns fronted by celebrities:

[…] Visible cancer champions (probably celebrities and influencers on social media) promoting this particularly for cancers that are stigmatised and underrepresented (such as lung and bowel cancers).

I have found social media charity and NHS updates on Facebook really interesting and useful despite being 60. It helps with symptom awareness. […]

Respondents also felt that the NHS website was a good tool that should continue to be utilised and signposted to in media campaigns:

[…] ensure excellent, crystal clear, bullet point symptom lists are available on the NHS website plus have diagnostic tools so a patient can list their symptoms and get help.

It’s not good to scare people but just a reminder on TV of the fact that safe information can be obtained at the NHS website.

In terms of specific population groups, many respondents felt that more needs to be done to reach young people. For example:

We need more campaigns that include young people, as there is too much narrative that it’s just an old person’s disease. We need more awareness that cancer can happen to anyone, at any age. Young people need to be taught the signs of symptoms of cancer. This can be done through talks in schools and colleges across the UK. We need to encourage young people to know their bodies and advocate for themselves as GPs won’t always get it right […].

[…] symptom awareness […] needs to get through to our younger generations to save lives.

Campaign messaging

To improve public awareness campaigns, respondents suggested increasing the focus on how people ‘feel’ within their bodies, and to seek help even when they are not sure if it is serious enough to indicate the presence of cancer. For example:

People need to reconnect with their own bodies and know they’re normal. In this fast pace of life, people are too tired, too stressed and just think being tired is normal. Encourage people to know themselves better and understand the presence of the unusual and the absence of the normal in their bodies needs to be looked into.

More public messaging around the changes in feeling, and all the symptoms of a cancer rather than just a lump. Definitely more messaging around ‘it’s okay to go and see your GP if you’re not sure’ as many people feel scared or a burden when going. […]

Again, many commented particularly on pancreatic cancer, and how important it is for individuals to recognise possible symptoms that could be mistaken for something less serious:

The symptoms of pancreatic cancer can be vague, so it’s really important that people know what to look for in order to flag it as a possibility. My mum had been unwell for ages and looking back on it, she should have had a scan much much earlier. Most people with pancreatic cancer aren’t diagnosed until it’s too late. A simple awareness campaign through TV, direct mail or an online symptom checker could save lots of lives.

Training of healthcare professionals

Respondents felt that healthcare professionals, particularly GPs, could benefit from more training on the signs and symptoms of cancer, and mechanisms to keep informed of the latest research and developments in this space. In turn, respondents believed this would help speed up diagnoses and referrals, so that treatment is started as early as possible.

Some respondents backed this suggestion up with personal testimonies of GPs and other health professionals not spotting the signs and symptoms of their, or their loved ones’, cancer, and the impact this had. A notable proportion of these testimonies focused on childhood cancers or pancreatic cancer.

For example:

My son died from complications of acute myeloid leukaemia. He was ill for several weeks prior to hospitalisation and formal diagnosis. More than one GP and several calls to NHS Helpline failed to recognise his symptoms or suggest a blood test. He suffered from fatigue, a wound that didn’t heal and bruising but was still told he was suffering from an infection and had repeat prescriptions for antibiotics. Professional medical people need training on specific signs of cancer.

Better training and education for GPs would be a major step forward. My wife was under the doctor’s care for nearly 6 months before she was referred for the tests that eventually picked up the cancer (pancreatic). Much time was spent treating it as a stomach problem.

My mother died of pancreatic cancer in April 2020 during the first COVID-19 related lockdown. She herself, her family, friends, her GP all had no awareness of the signs or symptoms of pancreatic cancer and therefore didn’t recognise the symptoms she had for many years prior to diagnosis. She was diagnosed too late for any effective treatment. She died 7 months after diagnosis. The symptoms of pancreatic cancer are vague and nonspecific, there isn’t a test to easily diagnose it and this means people like my mum die very quickly after diagnosis […] My mum’s GP did not recognise the signs of pancreatic cancer despite many visits my mum made over many years. Training of healthcare professionals in the signs, symptoms and risk factors for pancreatic cancer should be a priority. […] 

Respondents also flagged that while some cancers are more prevalent within certain population groups, anyone can get cancer – and therefore healthcare professionals should not dismiss a patient’s symptoms just because they do not share the typical profile of someone with that type of cancer. For instance:

GPs need to be more educated on the fact that cancer does not fit into certain age groups. All age groups are susceptible to cancers even young people. Don’t ignore their concerns.

I know that [GPs] are super stressed and busy but they are the gatekeepers and our only access to tests and treatment. This ignoring of symptoms is not the first time for me it happened with my one-year-old daughter who sadly it turned out was terminally ill. I was dismissed as an anxious mother.

Insights from professionals and organisations

Prioritisation

56% of organisations and professionals said that ‘raising awareness of the signs and symptoms of cancer’ should be prioritised over the next decade.

Suggestions

Many of the suggestions put forward by individuals were echoed by professionals and organisations. These mainly centred around:

• expanding and adapting the messaging used in public awareness campaigns, to cover rarer and less well-known symptoms and cancers, and to address people’s hesitancy to get their symptoms checked

• delivering public awareness campaigns in a range of formats and in partnership with charities and community groups where appropriate, to maximise reach

• better training and knowledge sharing across healthcare professions, improving links with cancer charities and community organisations, and making greater use of existing data

These are discussed, in turn, below.

Campaign messaging

Organisations and professionals said that public awareness campaigns need to cover a broader range of cancers, go into more detail on signs and symptoms, and encourage behavioural change by addressing hesitancy to act on symptoms.

Specific suggestions included, for example:

• ensuring campaigns do not just focus on the 4 most prevalent types of cancer in England, and raise awareness of other cancers that, for example, tend to be diagnosed later, have ‘non-specific’ symptoms that are sometimes mistaken for other conditions, and/or have poorer survival outcomes

• ensuring campaigns do not just focus on the most typical or obvious symptoms of cancer, because not all cancers present in the same way in every person (for example, breast cancer does not always present as a lump), and encouraging people to be more aware of the implications of a broader range of changes in their body and how they are feeling

• educating people on the similarities between some cancer symptoms and other diseases, to encourage early diagnosis and take-up of screening services (for example, reminding people that a new, continuous cough could be a sign of lung cancer, as well as COVID-19, or highlighting that some symptoms of bladder cancer are similar to those associated with urinary tract infections)

• addressing people’s fears and/or sense of embarrassment about attending check-ups and having symptoms investigated by, for example, educating people not only on how to spot symptoms but what to do next, lengthening GP appointments to give people the space to ask more questions where they have concerns

Across all suggestions, many emphasised the need to ensure campaign messaging is:

• inclusive, for example, using gender-neutral terminology to ensure that everyone with a cervix attends screening appointments, even if they identify as a man

• representative, for example, sharing patient stories that are culturally appropriate and capture the characteristics of people from different backgrounds

The one caveat to sharing patient stories put forward by some respondents was that they should not be so shocking or upsetting that they have the undesired impact of increasing people’s fears and hesitancy around getting their symptoms checked.

Campaign formats

Organisations and professionals said that public awareness campaigns need to be delivered more creatively and in a wider range of formats.

Specific suggestions included, for example:

• coupling traditional media campaigns (such as radio talks, TV adverts and storylines in TV shows) with social media campaigns (such as adverts on TikTok, Instagram and YouTube), and using influencers to spread the word about the signs and symptoms of cancer and help signpost their followers to useful resources with further information

• exploring the use of digital technologies, such as the NHS App, to encourage and normalise regular checking and logging of potential symptoms, with links directing people to helpful resources or the NHS non-emergency helpline 111, if the symptoms raise any red flags

• incorporating interactive elements, instructions for self-checking, and realistic images of cancer indicators at a range of stages of diagnosis (where possible)

However, they also emphasised the value of continuing to run offline, local and in-person campaigns, particularly when trying to raise awareness within specific communities (including, but not limited to, ethnic minorities, people who are homeless, sex workers and people who are digitally excluded).

Specific ideas included:

• placing posters and leaflets in health settings (such as hospitals, GP surgeries and sexual health clinics), as well as non-health settings (such as gyms, on public transport and in supermarkets), and signpost to further resources or helplines, including through use of digital technologies such as QR codes

• increasing the availability of telephone lines, drop-in clinics and local health initiatives, which can support people to identify signs and symptoms

• utilising community groups to deliver information sessions, and to help co-design campaigns to ensure they are inclusive and focus on local population needs

To reach children and young people, organisations and professionals said that resources must be easy to read and understand, using non-medical language and jargon. They also commented that schools have a role to play in explaining this information to children, showing them how to check their bodies for signs of cancer, and encouraging them to share this learning with their families.

Finally, organisations and professionals commented that campaigns should be evaluated and build upon what has worked in the past – with the ‘Help Us Help You’ campaign being commonly cited as an example of a good campaign.

Training, guidelines, collaboration and research

Beyond running public awareness campaigns, organisations and professionals suggested:

• improving the training of health professionals to better understand how children communicate pain symptoms that could be related to cancer, and to dispel the assumption that young people are ‘fit and healthy’ and do not get cancer

• offering free training modules, seminars, accredited sessions and resources (like GatewayC, a free online cancer education platform developed for primary care professionals across England) to support health professionals’ continuous learning

• increasing collaboration and knowledge sharing across health professionals, including dentists, nurses, physiotherapists and opticians, so that they can spot the symptoms of cancer as part of the regular health checks they conduct, and maximise the impact of each contact point with patients

• strengthening links and signposting between primary care, screening teams, Macmillan nurses, cancer charities and cancer care community volunteers

• encouraging consistency in the interpretation of cancer recognition and referral guidance so that, for example, those presenting with symptoms at certain ages or with certain risk factors are automatically offered further checks

• using machine learning and other techniques to explore existing data, better identify trends and at-risk groups, which could then inform targeted campaigns

• undertaking and funding intersectional research to better understand how cancers present themselves in different groups and how it is therefore best to raise awareness of certain symptoms and cancers with groups

Getting more people diagnosed quicker

Summary

90% of individuals and 74% of organisations and professionals said that ‘getting more people diagnosed quicker’ should be prioritised over the next decade.

Collectively, the most common suggestions they put forward to achieve this ambition were:

• raising public awareness of cancer symptoms and reducing the fear associated with receiving a cancer diagnosis, which can deter people from seeking help to investigate their symptoms

• funding to expand the GP workforce and tackle geographic disparities in access to appointments

• training for GPs to recognise a wider range of symptoms (including in children), better listen to patient concerns, and act sooner (moving away from a culture of ‘watch and wait’)

• expanding diagnostic pathways, including through greater use of self-referral, at-home tests, community and mobile centres

• investing in research and digital resources

Insights from individuals

Prioritisation

90% of individuals said that ‘getting more people diagnosed quicker’ should be prioritised over the next decade.

Individuals were most likely to select this as a priority if they were:

• from an Asian ethnic group (93%), compared to those from a black ethnic group (85%)

• from the West Midlands (93%), compared to those from London and the South West (87%)

• aged 25 to 34 (92%), compared to those aged 16 to 24 (85%)

Experiences and suggestions

Individuals put forward a range of suggestions to get more people diagnosed quickly, including:

• raising awareness of cancer symptoms and reducing the fear of reaching out for help

• easier access to and improved interactions with GPs

• expanding diagnostic pathways

These are discussed in turn, below.

Raising awareness and reducing fear

Many reflected that cancer cases are missed because people are not aware of their symptoms and/or do not feel comfortable seeking help for fear of what a cancer diagnosis might mean:

My experience suggests there’s a lot of stigma or fear involved in facing up to possible cancer, so many folk stick their heads in the sand. More open public discussion might encourage such to seek help when they’re worried? More positivity – too many folk still think cancer means death, and the message needs to be stronger that being alert to signs and asking for help as soon as you are suspicious vastly improves your chances.

Alongside open public discussions around seeking help for potential symptoms of cancer, respondents emphasised the importance of individuals being taken seriously when they do reach out for help – even if they do not fit the ‘typical’ profile of someone with cancer:

Encourage individuals to care for themselves ensuring they seek help rather than feel they’re being a nuisance. When they do seek help, ensure there are enough resources available to address their concerns including those individuals labelled as ‘anxious’, ‘attention-seeking’ or any number of other derogatory remarks used against them. If an individual is rarely seen in a healthcare capacity, foster an approach that recognises this and responds accordingly if someone rarely accessed medical care, perhaps when they do it’s because there is actually something wrong.

GPs and doctors and midwives etc […] all need to stop ruling out possible cancer because the patient is young. I have heard this so many times with young patients getting fobbed off for months/years and then ending up terminal. Bowel problems need to stop being dismissed as IBS or food intolerances or stress.

Easier access to and improved interactions with GPs

Respondents said that the GP workforce needs to be expanded to ensure GP surgeries have the capacity to see more people sooner:

It must be much much easier to get a GP appointment […] there must be more GPs […] Patients must not be made to feel they are wasting a doctor’s time if something turns out to be trivial (for example, a skin abrasion on the scalp or lip may be nothing or it may be cancer). One GP surgery (when it was very hard pressed) had a notice on their website telling people to try not to bother them in the early stages of a medical problem – this is scandalous.

When people are seen, some respondents suggested that GPs should take the approach of ‘assuming the worst and working backward’. The purpose of this would be to get patients on the referral waiting list sooner and therefore increase the likelihood of earlier diagnosis. For example:

GPs listening to the patients and ruling out the worst first and if it isn’t cancer dealing with the problem. Too much time is wasted starting at the bottom for example giving out medication to try to ease pain, come back in a few weeks if it makes no difference. Return a few weeks later and they give you something else to try, and all this is time wasting as the cancer is growing.

When someone goes to the GP with a concern [they should be] referred straight to the 2-week wait one-stop-clinic for further examinations straight away for any sign of cancer whether it’s a lump or changes in bowel habits etc rather than being sent away and told to come back if it continues or gets worse. It should be the first port of call for anyone no matter the age or family history of the patient. 

From my experience, the very tests needed in order to ‘qualify’ for a 2WW [2-week wait] cancer referral were not offered to me in the first instance I visited my GP. It was only once I had a private scan and the radiologist wrote immediately to my GP recommending biochemical correlation and an urgent referral that I was given a 2WW cancer referral. How are we supposed to diagnose people with cancer quicker if GPs are not referring people for simple tests and when they are, those conducting the tests are not writing key detailed reports which could lead to a faster referral and cancer diagnosis?

Others suggested that GPs need to receive better training to spot the signs and symptoms of cancer, including in children and young people, and to listen to patients who are best placed to recognise changes in their body and when something does not ‘feel right’. For example:

Educate doctors and nurses because they all missed my boy’s symptoms. He now can’t walk and is incontinent due to their lack of knowledge. If found sooner he’d be a healthy boy now without complications and I’m so frustrated with the healthcare system right now.

GPs need to be better trained to aggregate symptoms to spot cancer and have access to detailed scans that cover more than one organ. My father was treated for COVID and a heart condition and in the meantime the GPs missed aggressive lung tumours that killed him in 6 months.

Expanding diagnostic pathways

In addition to raising awareness and improving access to GPs, respondents suggested:

• making more diagnostic tools, including blood tests and at-home tests, available

• having specialist walk-in centres or mobile buses where people can simply turn up to access tests, scans, or talk through their symptoms

• enabling GPs to send patients for scans directly, rather than via a specialist

• reducing geographical variation in appointment and waiting list times

• investing in a specific screening programme that can accurately detect prostate cancer

• investing in research for early diagnosis

Insights from organisations and professionals

Prioritisation

74% of organisations and professionals said that ‘getting more people diagnosed quicker’ should be prioritised over the next decade.

Suggestions

The main proposals to achieve this, discussed in turn below, included:

• expanding diagnostic pathways and improving co-ordination across the system

• investment to expand the GP workforce and improve their training

• tailoring part of the strategy to target specific groups where necessary

• research funding and use of digital resources

Improvements to service provision, diagnostics and screening

Organisations and professionals noted that better standardisation of care pathways and improved co-ordination across the system would help get people diagnosed more quickly. Access to services could be improved by providing dedicated clinics for specific forms of cancer screening, funding transport costs, using community based or mobile services, providing free parking and providing access to diagnostics in a primary care setting. Proactive and early engagement with screening, alternative screening pathways, self-testing and improved awareness of resources would all also contribute.

Investment, training and workforce changes

Organisations and professionals emphasised the need for further investment to expand the GP workforce; in turn, making more appointments, including face-to-face appointments, available, and reducing waiting time disparities between regions. They also said that the approach of some GPs needs to change and could be addressed through training, including:

• the reluctance to refer patients

• not taking patients seriously

• misdiagnosis

• a culture of ‘watch and wait’

In addition, organisations and professionals suggested that other primary care providers should be trained and empowered to check for symptoms and carry out diagnostics.

Targeting specific patient groups

Organisations and professionals felt that some targeting of specific patient groups is necessary. For example, looking into and addressing the barriers that might prevent young people or minority groups from seeking help or being taken seriously when they do, and looking at the characteristics of population groups with higher rates of specific cancer types, regional disparities in access to services, and environmental factors (such as areas with high air pollution).

Research funding and the use of digital resources

Adequate long-term research funding was identified as a requirement to improve diagnostic capacity and efficiency. There are new technologies and improvements in genetic testing which can be used to identify at-risk individuals or families and diagnose patients more quickly, while digital resources could allow individuals to self-assess and be provided with next steps, for example home screening tests and direct referrals.

Improving access to and experiences of cancer treatment

Summary

72% of individuals, organisations and professionals said that ‘improving access and experiences of cancer treatment’ should be prioritised over the next decade.

Collectively, the most common suggestions they put forward to achieve this priority were:

• minimising the gap between getting diagnosed and starting treatment, as this can impact treatment options available to patients and their prognosis

• reducing geographical disparities in access to cancer care

• improving treatment spaces and wards, including children’s wards and the facilities available to their parents or carers

• investing in the NHS cancer workforce, in particular clinical nurse specialists who can act as a single point of contact for patients

• improved communication with patients to ensure they have all the information they need, and that it is delivered in a considerate way

In addition, organisations and professionals proposed several system-level improvements, including:

• greater integration of, and sharing of, information across services

• learning from the fast deployment of digital solutions to tackle the COVID-19 pandemic

• ensuring people with different characteristics are better represented in clinical trials and research

Insights from individuals

Prioritisation

72% of individuals said that ‘improving access to and experience of cancer treatment’ should be prioritised over the next decade.

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

• identified with a gender different from their sex registered at birth (92%), compared to cisgender respondents (72%)

• were from an Asian ethnic group (79%), compared to those identifying as white (72%) or other (70%)

• were aged 25 to 34 (79%), compared to those aged 16 to 25 (65%)

• were female (73%), compared to male (68%)

• had not received cancer treatment (75%), compared to those who had (67%)

Experiences and suggestions

In this section we combine the more general suggestions respondents put forward to improve access to and experiences of cancer services, with the more specific suggestions left by individuals who had undergone treatment.

These were:

• getting diagnosed sooner and being informed of the full range of treatment options

• reducing geographical disparities and travel distance

• reducing waiting times at appointments

• improving treatment spaces and wards, including children’s wards

• recruiting more clinical nurse specialists

• kinder communication with patients

• improving post-treatment support

These are discussed, in turn, below.

Getting diagnosed sooner and being informed of full range of treatment options

Of those who had undergone cancer treatment, many said that their experience would have been improved had they received their diagnosis sooner, not least because this impacted the treatment options available and their prognosis.

[…] I was told multiple times that I did not fit the profile of someone with bowel cancer (under 40, fit, slim, vegetarian). My initial symptoms were lower backache. This did not raise concern of doctors or chiropractor I was seeing, then I saw some blood in the stool. Blood tests showed inflammation but not significant levels. I was sent away for repeat bloods in 6 weeks. In that time I decided to tap into my private healthcare offered from my employer. I soon found out I had stage 4 bowel cancer. […]

Others would also have liked more information from healthcare professionals on the treatment options that are available.

[…] There are many treatments available privately which are not available on the NHS and cancer patients should be made aware of this as soon as they are diagnosed. This information will help all patients realise that there is hope after or as well as NHS treatment. It can be very costly but the patient will have all the treatments available to them at the beginning of treatment to help prolong their lives.

[…] Remember that as patients we have lives outside of being a cancer patient that we have to fit in around treatment and appointments, for example work, childcare, walking the dog, cooking, shopping. Understand what is important to someone and what their real life looks like, and provide support and make treatment decisions to best support the real person. Don’t just look at the cancer diagnosis in isolation and make treatment decisions on that without considering the real life person on the other side of the hospital number.

Reducing geographical disparities and travel distance

Many respondents said that where you live in the country unfairly determines how quickly you can access cancer treatment services, and that this must be addressed:

I believe it is only by resolving the problem with the NHS postcode lottery that access to cancer treatment can be improved. The postcode lottery is resulting in delays to patients receiving cancer treatment in certain regions, with thousands of people being left waiting to start their treatment. I suggest that addressing this is the best way to improve access to treatment and survival outcomes.

Respondents also made the point that some people are having to travel much further than others to receive treatment, especially those living in rural areas. This is particularly tiring for people undergoing cancer treatment and can place a greater burden on family members to co-ordinate and/or facilitate travel arrangements. For example:

More local and accessible to towns without larger hospitals. The travelling is tiring to receive treatment.

Make treatment local. I had to travel over 1 hour each way for each hospital visit. Chemo times 6 rounds meant 18 trips to the hospital, 3 trips per cycle, one for oncologist appointment, one for bloods then one for actual treatment. Partner had to take time off work each visit to take me. It wasn’t like popping 10 mins away to the local hospital.

Reducing waiting times at appointments

Some cancer patients expressed their frustration in having to wait a long time to be seen beyond the time of their scheduled appointment, especially when already feeling tired and unwell.

I would like for wait times in the clinics to be addressed. I fully appreciate that there are a great number of patients to see, and have nothing but admiration for how hard everyone works, but there is nothing worse than arriving on time for an appointment only to have to wait for hours on an uncomfortable chair when you are not feeling well. My record wait time for a clinic appointment was 3 hours, which I think is unacceptable. There needs to be more realistic organisation of appointment times; for example, if each patient is allocated 10 minutes but on average takes closer to 15 minutes, this should translate into the way that appointments are distributed. Dissatisfaction with the severe days in the clinic I attended was shared by most if not all of the people I spoke to in waiting rooms over 3 to 4 years.

Improving treatment spaces and wards

Some cancer patients said their experience was impacted by the environment in which they received their treatment.

Hospital environments, especially more recently built modern hospitals, can feel sterile and unwelcoming. During cancer treatment the experience can make one feel claustrophobic, especially if attending appointments or treatments alone. Clearly it’s a good thing that hospitals are sterile, bright, clean and efficient, but there were definitely periods of my treatment that made me feel like a person, and other parts which made me feel like another number.

Make the spaces where treatment is administered nicer. I had chemo in a ward that is old and dark and not really the nicest place to be! However the staff were incredible! Every single one! That is so important!

Others raised the same point in relation to children’s wards, and went further in suggesting there should be better facilities for parents and carers of children undergoing treatment.

For children who go into hospital with cancer there needs to be play specialists every day. Not just one for each hospital but a team of them. Better facilities for the parents that have to stay in hospital with their child. Decent food to eat for the children and their parent.

Recruiting more clinical nurse specialists

Respondents highlighted the crucial role that clinical nurse specialists play in making patients’ experiences of cancer treatment as positive as possible, and that funding should be made available to expand this area of the NHS workforce:

The advent of the clinical nurse specialists, in my view, hugely improved the cancer treatment experience for many patients. […] I would suggest in expanding clinical nurse specialist capacity.

Some linked this to the role that clinical nurse specialists do or could play in acting as a single point of contact for individuals. For example:

Having the same doctor or team treating you helps. It helps communication. For example, I never met my surgeon until the morning of my surgery. It was also only on the morning of my surgery that I was told about a key part of my surgery which had a severe psychological impact and was life changing. Better access to specialist nurses to help support and guide one.

More dedicated cancer nurses. Personal treatment. Each patient needs one point of contact and staff who know them and their needs.

Kinder communication with patients

Some respondents felt that healthcare professionals had lacked sensitivity in the way in which they delivered information about their treatment or prognosis. They suggested that training focused on how to communicate effectively with patients would be beneficial.

More compassion in the way messages are communicated. My sister died of cancer aged 50. The way it was communicated to her by a healthcare professional that she had less than 12 weeks to live was harsh and unthinking, and very upsetting to her. Training individuals in the impact of HOW information is communicated could make a huge difference to individuals. There is no easy way to communicate these messages but there are some ways which should not be allowed.

Improving post-treatment support

Some respondents said that the quality of care they received after treatment or surgery was inadequate. For example:

The post care [for] my operation aftercare was, in my opinion, appalling. Firstly I feel was put into the wrong type of ward. I was with 2 elderly ladies with dementia and 3 ladies with gastric problems. Secondly, I was given a drug that my pre operation notes said I was intolerant to. Thirdly when I left hospital after a full hysterectomy, I was given no pain relief to take home.

More explanation of what to expect. Some of my anxiety was based on not knowing what was happening next, including after care.

Insights from organisations and professionals

Prioritisation

72% of organisations and professionals said that ‘improving access to and experiences of cancer treatment’ should be prioritised over the next decade.

Suggestions

The main suggestions organisations and professionals put forward to achieve this included:

• reducing geographical disparities in access to care, clinical knowledge and trials

• reducing waiting times

• personalised, patient-centred care

• greater investment in the NHS

• better use of research and data

These are discussed, in turn, below.

Reducing geographical disparities

Organisations and professionals stated that more needs to be done to reduce geographical disparities in access to care and clinical knowledge. Proposals to achieve this included, for example:

• greater localisation of services so people can be treated closer to home

• more treatment services outside of hospitals, such as the provision of mobile units, at-home care, and use of community and pharmacy settings

• free transport for those travelling far to receive treatment, or from economically disadvantaged backgrounds, and free parking for patients and their carers

• nationally agreed and maintained guidance on cancer care to standardise services

• better knowledge sharing across services to inform best practice

Some also said that more needs to be done to address the postcode lottery in terms of access to clinical trials.

Reducing waiting times

Organisations and professionals highlighted the importance of accessing treatment as soon as possible, given the knock-on impact waiting times can have on eligibility for certain treatments, as well as the individuals stress levels and mental health. They suggested that:

• more should be done with waiting time data to audit where targets are being met or not

• trusts meeting waiting time targets should share their learning with others

• the backlog for diagnosis and treatment, worsened by the COVID-19 pandemic, must be addressed

Personalised, patient-centred care

Organisations and professionals emphasised the importance of cancer services and staff taking a personalised, patient-centred approach. Suggestions included, for example:

• ensuring patients are aware of the range of cancer treatments available to them, and their side effects, so that they can make informed choices and be fully involved in the decision-making process (they suggested that staff training on how to communicate with and listen to patients would be integral to this)

• ensuring the individual, and their family, receives a holistic package of support, including (where necessary) access to prehabilitation and rehabilitation teams, nutrition and exercise support, symptom and side effect management and psychological support

• having a workforce that is representative of the diverse communities in which it serves, and training and resources to help staff understand the influence of language, culture, religion and other social factors on the needs of some patient groups

• providing service adjustments for patients with co-morbidities, and patients with additional needs (such as those with learning disabilities, mental health needs or dementia), such as longer appointment times

For children and young people, organisations and professionals emphasised the importance of:

• providing developmental, educational and psychosocial support alongside treatment

• streamlining and improving their transition from child to adult services

• improving facilities and wards, including specialist play areas, better food, and consideration of the needs of their parents and family members supporting them

Greater investment in the NHS

Organisations and professionals acknowledged that to improve patient experience, further investment in the NHS and cancer workforce is required. Specific suggestions included, for example:

• increasing the number of clinical nurse specialists, as they often act as a ‘key navigator’ or single point of contact for patients and their families

• increasing the number of allied health professionals, support workers, GPs, dentists and mental health services, given that multidisciplinary teams are integral to treating the ‘whole’ person

• exploring new routes into professions, increased grants for training in cancer professions, and looking to the international workforce to bring in specialists from other countries

• enhancing workforce resilience and wellbeing initiatives to help retain existing staff

Alongside workforce investment, organisations and professionals suggested:

• upgrading hospital equipment and making physical improvements to facilities and wards

• streamlining IT systems to enable better sharing of information and more integrated services across primary and secondary care, from diagnosis through to treatment

• exploring the use of apps, automated services, telemedicine and artificial intelligence, learning from the fast deployment of digital solutions to tackle the COVID-19 pandemic

Better use of research and data

Organisations and professionals highlighted the need for improvements in the way that research and trials are conducted, stating:

• funding for trials needs to be easier and quicker, and more equal access needs to be provided

• staff should be offered research training so that specialist cancer staff can also conduct research, and research and trials are embedded within cancer care

• improved use of innovative technology and treatments was identified along with a need for an agile system to take on new developments quickly

• improved collaboration with institutes involved in development and delivery of new cancer treatment would also help make improvements in this area

• combination treatments and the increased use of genetic testing to personalise treatments should be explored

• there must be better representation of different population groups in trials, in particular people from ethnic minority backgrounds, but also people from the lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) community, those with learning disabilities, mental health conditions, dementia, and older adults

• the collection and publication of data by protected characteristic, especially by sex and ethnicity, is needed to better understand health inequalities and differences in treatment outcomes

Organisations and professionals also said that monitoring outcomes is not enough – we must act on findings to bring about change.

After-care and end-of-life care

Summary

64% of individuals and 66% of professionals and organisations said that ‘improving after-care and support services for cancer patients and their families’ should be prioritised over the next decade.

Collectively, the most common suggestions put forward to achieve this ambition were:

• increased funding for specialist nurses to act as the central point of contact for patients and their families, as well as increased funding for hospice services and charities who provide palliative and end-of-life care

• providing more comprehensive, integrated and personalised support after an individual receives a cancer diagnosis and (where applicable) after finishing their cancer treatment

• improved emotional, mental health, and practical support for patients, as well as their partners, family members, children and carers

• targeted support for specific groups, such as ethnic minority cancer patients and bereaved relatives, and children and young people living with and beyond cancer

Insights from individuals

Prioritisation

64% of individuals said that ‘improving after-care and support services for cancer patients and their families’ should be prioritised over the next decade.

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

• from an Asian (76%), black (70%), mixed (67%) or other (68%) ethnic background, compared to white respondents (63%)

• living with a disability (74%, compared to 61% of those without a disability)

• female (65%, compared to 57% of male respondents)

• aged 45 to 64 (66%, compared to 52% those aged 75 or over)

We also found that respondents were more likely to select after-care as a priority if they had previously undergone cancer treatment (66%, compared to 61% who had not).

Experiences and suggestions

The suggestions individuals put forward to improve after-care predominantly centred around the following themes:

• providing more comprehensive and personalised support once an individual receives a cancer diagnosis and (where applicable) after finishing their cancer treatment

• increased funding for hospice services and charities who provide palliative and end-of-life care, and better communication across organisations

• better emotional and practical support for partners, family members and carers of cancer patients

• system improvements, including dedicated specialist nurses and teams, and giving individuals opportunities to ask questions

• working beyond the healthcare system to better support children and young people living with and beyond cancer

These are discussed, in turn, below.

Comprehensive and personalised support

Individuals told us that the care and support people receive after being diagnosed with cancer and (where applicable) after finishing their treatment needs to be much more comprehensive and personalised. As one respondent summarised:

[…] Cancer is messy. It affects the patient and their supporters. It has financial implications, caring implications, in some cases loss of livelihoods and homes. Which have to be dealt with on top of the cancer itself. It also leads to change in identity, mental health issues, physical and mental exhaustion.

Emotional and mental health support

Emotional and mental health support was the area respondents felt was lacking the most, with many sharing that they felt lonely and forgotten after they had completed their treatment.

For example:

Once treatment over, felt lost and alone. Looked after by lots of departments, oncology, chemo, radiotherapy but didn’t seem to be a final sign off/it’s all over (for now) appt etc. Felt a bit ‘churned out’ at the end. Like you’re done – next!

There simply isn’t enough support after treatment finishes. You rely utterly on your care team and feel very dependent on them, you are in their hands for months or years. Then treatment ends and that’s it. You feel so abandoned. […] Going through cancer treatment is traumatic and lifechanging, and it can take many years to come to terms with it.

[…] After many months of living, eating and breathing cancer the diagnosis, the surgery, the chemo, the radiotherapy, the targeted therapy, and the reconstruction surgery (if you are lucky), the sense of loss and separation one feels on being told that the Breast Services team will no longer see you should not be underestimated.

[…] My mum had breast cancer, diagnosed quickly by our GP and hospital in beginning Nov 2020. Operation (lumpectomy) end of January but since that day she has felt alone and abandoned no one came to check on her she had one rushed phone call and she was scared. We could only do so much. It was a really awful experience for her and still affects her now.

Suggestions to improve support in this area included, for example:

• more check-up appointments over a longer period, which not only serve the purpose of monitoring recovery and signs of reoccurrence or secondary cancers, but to ask how the individual is feeling and let them discuss their worries and emotions

• proactively offering access to counselling in all cases, rather than leaving it to the individual to ask about this type of support and request it

• addressing geographical disparities in access to emotional and mental health support, by implementing national guidelines across health trusts and increasing the reach of charitable groups

• training volunteers to provide emotional and mental health support, and access to community support groups, to supplement support provided by salaried professionals

Financial support

Respondents called for more and ongoing financial support from the point of diagnosis, noting the negative effects a lack of income had on their health and wellbeing.

For example:

[..] Finances are shot, working full time one minute then totally incapacitated. I didn’t know about benefits, they don’t replace a salary and what a terrible ordeal it is. […]

There is so little financial support available. […] I was partly self-employed and had no financial back up and there are so many increased costs when you get a diagnosis. I really struggled and there was no help with this apart from £350 from Macmillan which might cover my next month’s energy bill!

Yes, cancer poverty is disgusting and should not happen. People work during treatment just to keep food on the table and end up more sick and stressed than they need to be. People get made homeless. […] Who knows, perhaps if people didn’t feel pressured into working while sick, they would not need so much care for long-term effects, or psychological care. […]

Respondents also emphasised the need for financial support to reflect the fact that some individuals will not return to the same level of fitness they had prior to cancer, and so the assumption should not be that they will be able to return to work or the same type of work immediately after remission.

For example:

One of the biggest issues during and after being diagnosed and treated for cancer is dealing with the financial burdens this imposes. Cancer and its treatments can leave you with severe restrictions in life and therefore returning to what might be considered a normal life is difficult, almost impossible. […] In my own experience, I had my disability allowance taken off me as a result of being able to walk more than 10 meters, no consideration was given to any other factors as a result of my cancer diagnoses and side effects from treatment such as mental health issues, fatigue, anxiety, depression, loss of muscle strength etc. […]

[…] Less than 2 weeks following major cancer surgery I received a phone call from my employer that my job was to be disestablished due to a staff cost cutting and organisational restructuring. […] Coping with the full redundancy process whilst on sick leave signed ‘unfit for work’ was extremely challenging. […] I was initially invited by my employer to attend redundancy briefing sessions on site at a time I had been advised not to drive for medical reasons […] I have been blessed that my surgery was deemed successful. For some people the process may have completely tipped them over the edge potentially impacting their recovery.

Suggestions to improve support in this area included, for example:

• better provision of information on the types of financial support available and how to access it, including state benefits

• quicker, easier and more sympathetic process for applying for state benefits, and reducing the wait for payment following approval

• enhanced sick leave for those who are employed and self-employed

• assistance with taxi fares, recognising that not all patients will have access to a car and be well enough to travel on public transport

• removing parking fees at hospitals for all cancer patients

• ensuring all employers have a cancer policy in place clearly outlining their duty of care to staff experiencing cancer

Nutritional support

Some respondents called for improved nutritional support, and this was most prevalent among those who have been diagnosed, or cared for someone, with pancreatic or stomach cancer.

For example:

Mum received some level of aftercare and support after her pancreatic cancer diagnosis, but this was a bit patchy and inconsistent. She had access to a nutritionist, who gave some advice and ensured Mum was prescribed nutritional shakes, but who was no longer in contact when Mum stopped being able to eat.

Specialist nutritional advice and support is needed for patients with pancreatic cancer. Even after diagnosis, my father was wrongly advised to eat high fat content food because he had suffered significant weight loss, when this made him sick and his quality of life did not improve until his family identified the best foods to feed him. […]

If I had had an elective gastric bypass for weight control I would have dietetic support and full nutritional bloods as part of my routine care. As my stomach was operated on because of cancer I don’t get this, I have to fight for it. The knowledge of nutritional support for patients who’ve had surgery of their digestive tract is woefully inadequate. […]

Support for long-term effects

Respondents commented that there is little support to deal with the long-term effects of cancer treatment, including, for example:

• secondary lymphoedema

• scarring and disfigurement

• post-chemotherapy cognitive impairment (informally known as ‘chemo fog’)

• hearing loss

• deterioration of teeth and gums

• infertility

• reduced mobility

Palliative and end-of-life care

A subset of respondents shared their reflections as a partner, family member or carer of someone who died from cancer.

Funding

One of the main suggestions they put forward was to increase central funding for hospice services and cancer charities who provide palliative and end-of-life care, including in the home. There was a feeling that these services are too dependent on volunteers and donations and, as a result, some cancer patients have not been able to choose how and where they spend their final moments, and their relatives and carers have felt helpless.

For example:

[…] When my Dad was dying, his wish was to die in a hospice but sadly a hospice place could not be found in time and he died a horrific death in a hospital bed. It is a great regret to me that I feel he would have died more comfortably in a hospice with specialist palliative care. In the last week of his life, my sisters and I had to listen to my dad begging the doctors and nurses to please just kill him. […]

[…] the support [my wife] got in the final stages was a bit hit and miss. The people providing the care at home were excellent but not always available due to workload and in the end she had to go into a hospice to ensure she could receive timely care as required […].

My experience of relatives who have had hospice care at the end of their lives is that these establishments seem to rely on fundraising events/donations to enhance the service/care they provide. It gives the impression that such care is not a priority.

Many charities offer these services already and are the best qualified and most experienced to offer them. Ensure that these organisations have government funding, rather than relying on donations. Hospices provide an amazing service which take a huge amount of pressure off the NHS and deserve support.

More broadly, respondents suggested that funding was needed to address geographical disparities in the support available.

For example:

[…] The nearest nurses at the time of my father’s difficulties were an hour and a half away when they were needed. My mother and I were informed that there were only 3 teams of 2 covering the entire county […] overnight. The Hospice at Home service is a brilliant idea, but it is essential that it is fully resourced and funded in order to be effectual.

Make regional centres of excellences, where all the best brains can work collectively. It’s not fair that some patients have great centres like the Royal Marsden or the Christie and others are treated on shoe strings with poorly staffed centres and receive only the very basic treatments available. [The hospital] offer no after care. Have no Maggie’s or Macmillan centres for courses, exercise, counselling or group support. It needs to either deliver proper care or hand the service over to a larger more efficient and well-funded trust.

A smaller number of individuals also raised the point that cancer patients with a terminal diagnosis can still live for many months and years, and so financial support should be provided to help them live the best life they can.

For example:

Incurable and chronic cancers need more support to live their remaining lives productively and positively. End-of-life care should not just include the part where you die. It’s much bigger and broader than that for many patients at the end of their lives which can run into years for some. Introduce a Living Well With Cancer support service outside the NHS. Discrimination in any form against cancer patients [should] be a specific tort in law. Allow access to PIP [Personal Independence Payment] for incurable cancer patients immediately and abolish the 12-month death rule.

Communication and co-ordination

Another common suggestion was that there needs to be much better communication and co-ordination across professions and organisations. Often, disjointed service provision led to shortfalls in the timeliness and quality of care cancer patients received and placed a large burden on family members and carers.

For example:

[…] There was often a lack of communication between services […] which put undue stress onto my mother during a time that she should have been making the most of their final days together. Medications […] were out of date and unusable by the hospice nurses that came in, which left my father in pain. A lack of communication led to the prescription to replace these items not being put in and my mother having to push medical professionals to prescribe them. My mother phoned the district nurses when she returned home with my father from the local hospital. He urgently required catheter bags […] They responded after a week, which left my mother having to look at the serial numbers on the bags to order them from the manufacturers directly. The specialist bed for him arrived too late for him to be moved into and the driver for his pain relief was left sat on the dining table during the night of his death, as the amount of pain relief he should have been administered through it had not been calculated. […] My mother and I felt that my father’s death was undignified, which he did not deserve.

[…] we went from GP, Hospice, District Nurse and 111 so much back and forward spending time on the phone when we should have had a liaison person who truly cared and would have helped with that.

[…] I had to do all the chasing for extra pain killers, upping the prescriptions of the morphine drip and even phoning the pharmacy every day to ensure they had stock. All this while caring for mum and looking after my dad who became unwell with the pressure. […]

Once diagnosed, services are not joined up especially if you are receiving palliative care. The GP, district nurse, hospice, carers, occupational therapists, diabetic clinician and oncologist are involved but no one seems to co-ordinate any action. For carers and the patient it is horrendous if you want advice. Who do you contact? […]

The main suggestion to address this problem centred around ensuring patients and their families have a single point of contact who is available to answer questions – including in the evening, over weekends and bank holidays – and can proactively co-ordinate activities across services and organisations.

Emotional and practical support for family and carers

Respondents told us that family members often do not receive any support, even if they are playing an active role in the care of a cancer patient.

For example:

As relatives, we felt very forgotten. We seemed to have no support at all. […]

[…] my family have had no support or even offered any support. I’m very lucky I’ve got a fantastic husband and family support but I can understand when I read statements like ‘having cancer can destroy marriages. Having cancer makes you very angry as you have the life you thought you were going to have taken away. The poor partner bears the brunt of this. So I would say we fail miserably in this area.

My 37-year-old daughter is recovering from breast cancer treatment. Her 3-year old son has been traumatised. No help or support for him. […]

[…] In terms of family there was nothing offered. My 2 school-aged children have struggled with their mental health. Support for them and my husband would have been highly beneficial. We really were on our own trying to navigate everything ourselves.

My family have never been offered any support despite me having 4 cancers in 5 years. […]

My family didn’t get any counselling and this manifested itself years later with my children. It’s impacted my son’s education and he became very withdrawn. […]

Once our son was being treated, it was easier to get hold of people and ask for advice, but after having a bombshell diagnosis totally out of the blue turn our lives upside down, we could have done with a lot more support than we were offered. […] We have […] not had much luck seeking counselling support and my husband, who is now suffering with anxiety following our son’s treatment and ongoing surveillance scans, has had to pay to go private.

Like cancer patients themselves, the types of support required was wide ranging, and included:

• more information about what to expect when caring for someone with cancer, and ensuring it is delivered in a culturally sensitive way:

[…] there seems to be little support available for families on what to expect and how to support loved ones who have experienced cancer. For example, in some communities there is an unwillingness to even name the disease so giving people practical psychological tools that are culturally sensitive could have tremendous benefits in helping to inform and empower communities on cancer care. […]

• working with schools to support children of cancer patients:

[…] Children, [particularly] boys and husbands, aren’t great at getting help or talking through things. More information to schools on how to support children whose parents are undergoing cancer care. More information to parents on how to help your children cope […]

• financial support and practical help to access this:

[…] More value needs to be placed on family carers (they are grossly undervalued at present) they also need proper payment. […]

[…] We (patients and carers) were just muddling through. […] we only got financial help when he went in a hospice and patients and carers have to give up work. It’s important to plan if on low wages as you will have to give up work to care. I should have planned better but couldn’t cope with thinking about it. Our wonderful palliative team contacted Macmillan who took over sorting care allowances so for his last months we had help. […]

Improved and consistent support by employers enabling close family relatives to provide much needed support for a family member perhaps adjusting after major surgery at home or with a terminal diagnosis. The Employment (Caring Leave) Bill currently in its second reading in the House of Commons is in the right direction. […]

• addressing geographical disparities in support provision:

The support I have been offered had been minimal. I live in a rural area and realised when I attended a support group via Zoom that the other participants that lived in bigger towns and cities were able to pop into Christies and other groups that offered art therapy, talking therapy, holistic therapy etc and felt I’d really missed out due to where I lived. I only found the Zoom group from a Facebook group. Any help I’ve received I’ve had to find myself. I think it should be a standard protocol that the families of a cancer patient should be offered support. 

• bereavement support, including better signposting, proactively offering support, and shorter waiting times:

[…] When my husband finally passed and my daughter felt the need to take up the offer of counselling, she was told there is at least a 68-week wait. Access to this after care service is paramount for some, just to be able to cope and adjust to life without their loved one. It seems crazy that you have to book counselling sessions in advance of your loss and whilst your loved one is still alive. No one would have the insight or courage to do that. We need more qualified therapists on the NHS so there is no cost involved.

Bereavement and psychological support for families affected by childhood cancer treatment is non-existent. Please invest in psychology support for all childhood cancer patients and families through their hospital. And every bereaved family where a child under 18 dies from cancer should have automatic support from appropriate services funded by the state. A service where they reach out to families, not where the family has to initiate the support.

Invest into bereavement resources to support families left behind, invest in psychotherapists for partners and children and continue to offer them support even if they don’t immediately respond, ideally reach out to the children directly and don’t just ask the parents. Any materials that can be NHS supported on YouTube and social media to open the conversation and tackle any stigma/hesitation to talk about things.

[…] Families often care for their loved ones at home, which takes the burden off of NHS, but no consideration is given to the families after their loved one has passed, the horrific symptoms and decline they have witnessed etc. With prostate cancer this can often lead to very elderly women facing the rest of their lives alone having lost their loved one, often after being together for many years, this seems to be forgotten. Yes there are bereavement charities such Cruse etc, but there is no signposting to these resources.

System improvements

The broader, system-level improvements respondents put forward to improve after-care and support for patients and their families included:

• dedicated specialist nurses and teams:

[…] Effective co-ordination and communication is vital to ensure the best possible end for a patient and their family. The presence of Mesothelioma Nurse Specialists throughout this pathway gives patients and their families reliability, assurance and consistency in their care. The nurse specialists help with closing gaps, co-ordinating disparate elements, and clear communication amongst professionals. Where there is no access to Mesothelioma Nurse Specialists, patients and families report crippling fears, anxieties, and frustrations in their journey.

Have a named specialist cancer contact that you can email or call with any concerns, new symptoms. Whilst you may not feel things are serious enough to try and get a consultant appointment, reassurance about any worries, symptoms would be invaluable.

• providing information in a more compassionate way and ensuring individuals are able to discuss this and ask questions:

Mum was provided with a large folder of information and was left alone with this, without explanation or prior warning that the information within it could be distressing. Whilst the information was accurate, it terrified Mum and she was unable to get through it all. So I would like to see this continue to be provided, but in a more sensitive way and with immediate support from Macmillan or similar charities, or from mental health/psychological services.

In 2018 I was told I had incurable stage 4 bladder cancer. The hospital staff were very sympathetic and pleasant, but I was left to find out for myself what this would mean. I suggest proactive contact with cancer sufferers by advice services, not the other way round. For example, an advice service proactively contacting a newly identified cancer patient and offering to answer their questions, explain treatment pathways, managing expectations etc. Don’t just wait for the cancer patient to contact you – how do they know who to contact?

I think it’s a big shock when told you have cancer and I personally could not take it in. Someone you could speak to on the phone to ask questions and get answers. I know doctors are busy people so maybe employ people who could do just this and you could get to know through your treatment. […] I know we are meant to have a cancer nurse but mine never answered her phone or got back to me. So I gave up on her and tried to cope alone.

• improving the holistic needs assessment process, making information more accessible, reducing the onus on patients to seek out support:

There are several strategies in place, but these are largely tick box exercises, and too much onus is placed on the patient to seek out/participate in various elements of support. For example, the holistic needs assessment is a piece of paper with tick boxes sent to the patient’s home. I imagine few people bother to complete it. […] while I applaud the notion that people are in charge of their own lives, there is too much left to chance here regarding whether people access the various sources of support.

[…] Too often patients and their families feel they shouldn’t be bothering the health professionals. That perception needs reversing. […] The worst thing is being given a helpline number or email address and promised help is always available and then those helplines are never answered. [This is based on] personal experience which has left the whole family sceptical of any help being available when it is needed.

Information on all resources that are available should be easily accessible, and directions for these given to patients when required, it should not just be down to the charities and various other support groups and volunteers. Many are left to sink or swim […]

Information signposting both patients and families to support agencies, groups and charities that can help rather than letting people find out for themselves when they are already frightened and stressed and don’t have the energy to do this for themselves. This should definitely apply to older people who may not have the capability to go online, vulnerable people, people who are on their own and don’t have any family or friends to support them. There is a lot of resource available but many people are not aware of it and this definitely needs improvement.

• improved communication outside of ‘normal’ office hours:

After my son’s rhabdomyosarcoma diagnosis […] we were sent home without any information, support or even any helpline numbers to talk to. We had no plan other than to wait until after the weekend and somebody from […] children’s hospital would call us. Which they didn’t. It was the worst weekend of our lives, having no information other than a provisional metastatic cancer diagnosis. They couldn’t tell us what it was or might be and sent us home with an apology that nothing really happens over the weekend and it’s tricky to get hold of anyone because it is half term and it’s coming up to the end of the annual leave year, so lots of people are away. We couldn’t even get any advice or support from cancer charities as we didn’t have a definitive diagnosis, so couldn’t put us on any sort of pathway; it was entirely ridiculous. […]

Children and young people

A subset of respondents shared their views on how to improve after-care for children and young people living with and beyond cancer.

This included, for example:

• not waiting until the young person is cured to provide after-care, and ensuring tailored support for those with tumours affecting the brain:

Make mental health services easy to access. Don’t leave aftercare until ‘cure is achieved’, children and adolescents especially need early support and beyond cure. Ensure training of new staff to support adolescent adult transition services for those surviving cancer or brain tumour in childhood, separate from adult cancers.

[…] In those with the greatest and most challenging developmental and recovery needs (i.e. growing children and adolescents, and those with tumours affecting the brain), ensure the recovery aftercare support needed is NOT left until cure has been achieved 5 years after disease remission, but is holistically assessed, and continuously delivered at planned stages, in parallel with the treatment pathway. This needs to continue beyond cure to full maturity and/or recovery as has been proposed by NICE in children with brain tumours since 2005, and again in 2014, but is not uniformly accessible to every child. Ensure training of new staff to support dedicated adolescent adult transition services for those surviving a cancer or brain tumour in childhood, separate from those who have survived adult cancers, and invest accordingly in interventional and social research into their long-term needs and helping them fulfil their potential.

• ensuring support is joined-up across professions and organisations, including with schools:

You need a holistic approach. How has it affected the child psychologically, physically and how is it affecting them at school. Co-ordinate services. Occupational health, physio, ophthalmologist neuro development educational phycologist. See the whole child, assess all their needs so they don’t have to struggle and fight their way through. Make it easier to apply for an [Education, Health and Care Plan] and for the local authority to assess and meet the child’s needs. 

• reintroducing yearly check-ups for children and ensuring they receive long-term support as they transition into adulthood:

[…] bring back yearly check-ups for children they still have them in Scotland. There is no support now for children post treatment this has had a devastating effect on my child who was told aged 6 she was no longer diabetic as her bloods were normal. However, aged 16 she was diagnosed as diabetic as her pancreas that was damaged by chemo can’t produce the right amount of insulin now she is bigger. If she had yearly check ups this might have been picked up before her bloods went ridiculously high. […]

[…] [My child’s] teeth were affected by chemo and we had little support […] We don’t know if our daughter is able to have kids there is no support. […] All kids should have the right to ongoing aftercare and support including trauma counselling, access to a dietician, have their bone density and heart checked before they are discharged or rather abandoned to a GP. It’s appalling and so upsetting what my daughter has been through and it was avoidable.

[…] Recognise young people do not just ‘bounce back’ after cancer and we face many challenges years after remission […]

Insights from organisations and professionals

Prioritisation

66% of professionals and organisations said that ‘improving after-care and support services for cancer patients and their families’ should be prioritised over the next decade.

Suggestions

The main suggestions professionals and organisations put forward to achieve this ambition included:

• financial investment in palliative and end-of-life-care, including for specialist nurses, hospices and charities

• improving services across the treatment pathway, from prehabilitation to rehabilitation, late effects services and follow ups

• improvements in mental health care and support

• integrated services and more personalised care

• tailored support for ethnic minority groups

Funding

Many organisations and professionals stressed the importance of financial investment in palliative and end-of-life services, including increased staffing levels (both in the NHS and in the community) to ensure patients can receive these services sooner.

Specifically, some stressed the need for more clinical nurse specialists – as they could be best placed to engage in frequent follow-ups with patients once their treatment is over, and to act as their primary point of contact for any issues or queries they might have. They also suggested that allied health professionals should be used more frequently, as they are integral to the patient’s experience and could provide very useful services.

Others called for funding for charities, such as Macmillan and Marie Curie, so that they are not overly reliant on charitable donations.

Treatment service improvements

Organisations and professionals highlighted the need to improve treatment services, prehabilitation, through to rehabilitation and follow-up appointments.

Self-management and prehabilitation:

• organisations stressed that patients need more pre-treatment services, such as self-management and prehabilitation

• patients need more information and help with self-management treatments such as: what vitamins to take, their diets, general nutritional support and exercise

• self-management needs to start at the beginning of a patient’s journey as part of prehabilitation to improve patients’ tolerance to treatment and improve their quality of life

Rehabilitation, late effects services and follow-ups:

• patients in after-care need more frequent follow-up appointments with their GP, community and oncology team to discuss any concerns – these appointments need to occur for a longer period post-treatment

• there needs to be better provision for rehabilitation services for patients’ post-treatment to help with their recovery

• late effects service provision should be expanded to ensure that all patients are offered these services as part of their after-care, as well as during their treatment

Mental health care

Organisations felt that the provision of mental health care available to cancer patients needs to be drastically improved, suggesting:

• mental health care needs to be available from the beginning of a patient’s journey and as part of their after-care plan – they felt this is especially important as many people are living with cancer for longer, which can take a mental toll on an individual

• mental health care should be offered not only to patients, but also their children and family members

• more financial investment in these services

Integrated care pathways and holistic or personalised care

Organisations noted that to make care more personalised for patients, services would benefit from being more joined up, suggesting:

• more integration between primary, community, secondary and other services to create more holistic or personalised care for patients

• integrating after-care services into pathways so individuals do not have to actively seek these services out

• all patients should be provided with personalised recovery care that is specific to their needs and their cancer type; some respondents felt that all patients should have a holistic needs assessment

• follow-up care pathways should be standardised across the NHS with access to multi-disciplinary teams.

Ethnic minority groups

A small number of respondents flagged specific considerations for after-care and palliative care for those patients and families from ethnic minority backgrounds:

• there is a need for support groups for those from an ethnic minority background, that are tailored to different cultures and backgrounds

• organisations noted that there is reluctance among some ethic minority communities to seek support for their bereavement – and that more needs to be done to reach these groups with bereavement services

• there are also disparities in the place of death among ethnic minority groups: ethnic minority individuals who die from cancer are less likely to die in a hospice or at home – this should be researched to ensure they are receiving appropriate support

Maximising the impact of research and data

Summary

We asked respondents for suggestions to maximise the impact of research and data on cancer and cancer services in England.

Collectively, the most common suggestions put forward were:

• to increase funding across a variety of cancer research needs, and funding for clinical and research staff to conduct the research

• to improve cancer patients’ access to clinical trials, and ensure that research and trials involve people with different protected characteristics

• more collaborative research and sharing of best practice and lessons learned, across trusts, patient groups, cancer alliances, organisations and countries

In addition, organisations and professionals called for improvements to existing data collections and structures, emphasising the need for accurate, standardised national data on cancer patients.

Insights from individuals

Suggestions

The main suggestions individuals put forward to maximise the impact of research and data were:

• increased, centralised funding for cancer research, particularly for pancreatic cancer and childhood cancers

• improving cancer patients’ access to clinical trials and speeding up the process of approving new treatments, learning from the successes of the COVID-19 pandemic

• increased collaborative research, working with other countries and sharing results internationally, and training healthcare professionals on new findings

These are discussed, in turn, below.

Centralised funding for cancer research

A common theme among individuals’ responses was the need for increased funding for cancer research, particularly pancreatic cancer and children’s cancers:

We urgently need to see a significant investment in research to diagnose and treat pancreatic cancer.

More funding and research needs to be directed to children’s cancers. The big charities within the UK give a tiny percentage of funds to children’s cancer research. Within the last 30 years only a handful of new treatments have become available for children’s cancers whereas adults have had 100s.

Respondents felt that the government should be providing this increased funding, rather than relying on charities and public fundraising activities:

Provide more direct funding into charities such as Cancer Research UK, instead of them having to rely on charitable donations and having to waste money trying to obtain these donations by spending on mailshots, raffles etc. There seems to be a plethora of cancer charities, all vying for money and possibly duplicating research and effort. Perhaps this needs rationalising by combining their resources, similar to what happened with Imperial Cancer Research Fund and Cancer Research Campaign in 2002 […].

Put more money into it. Too much is relied on charities to fund this research and as we know COVID has had a dramatic effect on the amount of donations that have been received by these charities. Also now that we are facing much higher living costs this will also affect the amount that people are able to donate to charities.

Access to clinical trials and approval of new treatments

One of the main reflections shared by individuals was that cancer patients should be better informed about and have improved access to clinical trials:

More NHS cancer patients [should be] given the option to join trials or be given the option to take part in research and given the option, where there is a medical case, access to newer treatments or at least be advised of them including the risks so that they can have some control over their treatment plan and consider what options are available so that they can make an educated decision. All patients should also be given the opportunity to participate/allow their case to be included in data for future research if they consent to improve research.

Access to clinical trials is so restrictive that many cancer patients are excluded due to other conditions. It’s not good enough, trials need to be more open so that patients can access the new treatment options sooner. […].

Many commented on the significant research progress made during the COVID-19 pandemic, and urged that this learning should be applied to cancer trials:

[…] And there needs to be a much better way for patients to find trials that will be appropriate for them. Trawling through the clinical trials register is painfully slow. The COVID trials seem to have worked well and have produced fast results that have been implemented quickly. I don’t know how this has been done exactly but it would be where I would look to improve the speed of trials and getting the results into practice sooner.

Maybe more extensive trials of new treatments. Also, COVID vaccination research showed that faster processes were possible by changing the development model to allow some processes to run in parallel rather than be sequential. Maybe this revised process model could be more extensively applied, reducing timescales and costs […].

Collaborating on research

Respondents flagged the need for more collaboration and data sharing across organisations in England, but also internationally:

[…] we should not be looking purely within our own country, we need to have access to the best research and specialists from around the world and be willing to share information with other countries in the same way as happened during the pandemic. The government needs to be open to all different sources of funding. The government also needs to build the links between researchers in universities, private companies and the NHS to work together more efficiently and effectively and not in silos.

This global collaboration was felt to be particularly important for under-researched and rarer cancers:

Pancreatic cancer is a very under-researched disease. We need more, better and more innovative research to crack this cancer. More testing is needed within diagnosed pancreatic cancer patients and more of a global testing within the over 50s to work out why it is caused and when it starts to develop.

Respondents felt that once research has been completed, there is a need to speed up the process of making research findings available to NHS staff so that new developments can more immediately be put into practice:

Make the results immediately available to every hospital in the UK and beyond, and work with other countries to share such research. Put it into practice sooner by working on this aspect in parallel with the research study, where possible. Have the teams briefed and ready to run with it as soon as it is proven.

Insights from organisations and professionals

Suggestions

The main suggestions organisations and professionals put forward largely revolved around:

• data improvement, both in terms of access to standardised, centralised data, and in ensuring research captures patients with different characteristics

• implementing lessons learned from national and international research studies

• increasing funding across a variety of research needs, including funding time for those in clinical posts to conduct research

• ensuring research is collaborative across trusts, patient groups and cancer alliances

These are discussed in more detail below.

Data improvement

A high volume of organisations and professionals talked about data improvement, and identified the need for accurate, standardised data on cancer patients in a centralised national database that is kept up to date and available for both clinicians and researchers to use at the level of detail that they need.

Suggestions were also put forward to address health inequalities in research, for example:

• ensuring clinical trials and research includes participants with different protected characteristics, especially those from ethnic minority backgrounds, as well as patients with complex health issues

• analysing results by demographics, including differences between men and women, and considering the implications health inequalities

Some also suggested that improvements need to be made to enable further and more timely research on cancer in children in young people. Problems identified include regulation, limited access to data, research governance, ethics approval and gaining patient consent to data and tissue samples.

Implementing lessons learned

Much like individual respondents, organisations and professionals highlighted the need for lessons to be learned and advice to be implemented from both national and international studies. They noted that clinical and academic teams should work together to encourage the sharing of knowledge and findings. This could be helped by requiring NHS staff to have some cancer research training, and research staff to report findings to a national research body every 6 months.

Funding

Funding needs were raised by many organisations and professionals, and this covered a wide range of things, from data collection software to expanding the number of research and clinical posts. They also commented that clinicians are already overstretched, and so increased NHS workforce funding is needed to ensure clinicians have the space and time to reflect on and implement research.

Collaboration

Finally, they called for closer links and collaboration between groups to achieve common goals, highlighting that research should be collaborative with trusts, patient groups and cancer alliances, using alliances to translate research into action.

Glossary and further reading

Here are a few resources where you can read more about the different types of cancer:

Cancer – NHS

Cancer types A to Z – Macmillan Cancer Support

Your cancer type – Cancer Research UK

Further terms mentioned in this report are defined below, including medical conditions and treatments, which some readers may be less familiar with.

The definitions are correct at time of publication and should not be used for the purpose of self-diagnosing any symptoms you or others may be experiencing.

Acute myeloid leukaemia

Leukaemia is cancer of the white blood cells. Acute leukaemia means it progresses quickly and aggressively, and usually requires immediate treatment. Acute myeloid leukaemia is an aggressive cancer of the myeloid cells.

Source: NHS – acute myeloid leukaemia

Allied health professionals

Allied health professionals (AHPs) provide system-wide care to assess, treat, diagnose and discharge patients across social care, housing, education, and independent and voluntary sectors. Through adopting a holistic approach to healthcare, AHPs are able to help manage patients’ care throughout the life course from birth to palliative care. Their focus is on prevention and improvement of health and wellbeing to maximise the potential for individuals to live full and active lives within their family circles, social networks, education or training, and the workplace.

Source: NHS – allied health professionals

Chemo fog or chemo brain

Chemo fog or chemo brain refers to cognitive changes, such as changes in memory, concentration and the ability to be able to think clearly, which were originally attributed to undergoing chemotherapy. However, these changes can be due to a variety of reasons, including other cancer treatments and the cancer itself.

Source: Cancer Research UK – cognitive changes: chemo brain

Chemotherapy

Chemotherapy is a cancer treatment where medicine is used to kill cancer cells. There are many different types of chemotherapy medicine, but they all work in a similar way.

Source: NHS – chemotherapy

Clinical nurse specialists

Clinical nurse specialists (CNSs) are dedicated to a particular area of nursing, caring for patients suffering from long-term conditions and diseases such as cancer.

Source: Macmillan – clinical nurse specialists

GatewayC

GatewayC is a free online cancer education platform developed for primary care professionals across England, aiming to improve cancer outcomes by facilitating earlier diagnosis and improving patient experience. The platform is fully funded by Health Education England and assists users to confidently identify, refer and support patients with symptoms on a suspected cancer pathway.

Holistic needs assessment

A holistic needs assessment (HNA) is a simple questionnaire for patients. The assessment can be carried out at any stage of the cancer pathway, on paper or electronically, to help:

• identify a patient’s concerns

• start a conversation about needs

• develop a personalised care and support plan

• share the right information

• at the right times, signpost to relevant services

HNAs are a key intervention of personalised care for people living with cancer.

Source: Macmillan – holistic needs assessment

Irritable bowel syndrome

Irritable bowel syndrome (IBS) is a common condition that affects the digestive system.

It causes symptoms like stomach cramps, bloating, diarrhoea and constipation. These tend to come and go over time, and can last for days, weeks or months at a time. It’s usually a lifelong problem. It can be very frustrating to live with and can have a big impact on everyday life.

Source: NHS – irritable bowel syndrome

Lymphoedema

Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.

It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.

Source: NHS – lymphoedema

Mastectomy

A mastectomy is an operation to remove a breast. It’s used to treat breast cancer in women and men. Some women at high risk of breast cancer choose to have a mastectomy even when there’s no sign of cancer.

Source: NHS – mastectomy

National Institute for Health and Care Excellence

The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body of the Department of Health and Social Care in England. NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. One way they do this is through the production of evidence-based guidance and advice for health, public health and social care practitioners.

Oncology

Oncology is a branch of medicine that specialises in the diagnosis and treatment of cancer. It includes:

• medical oncology – the use of chemotherapy, hormone therapy and other drugs to treat cancer)

• radiation oncology – the use of radiation therapy to treat cancer

• surgical oncology – the use of surgery and other procedures to treat cancer

Source: National Cancer Institute – oncology

Palliative care

Palliative care is given to improve the quality of life and help reduce pain in people who have a serious or life-threatening disease, such as cancer. The goal of palliative care is to prevent or treat, as early as possible, the symptoms of the disease and the side effects caused by treatment of the disease. It also attends to the psychological, social, and spiritual problems caused by the disease or its treatment. For cancer, palliative care may include therapies, such as surgery, radiation therapy, or chemotherapy, to remove, shrink, or slow the growth of a tumour that is causing pain. It may also include family and caregiver support. Palliative care may be given with other treatments from the time of diagnosis until the end of life.

Source: National Cancer Institute – palliative care

Polycystic ovary syndrome

Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman’s ovaries work. PCOS cannot be cured, but the symptoms can be managed.

To be diagnosed with PCOS, women have 2 out of the 3 main features, which are:

• irregular periods

• excess androgen – high levels of male hormones in the body

• polycystic appearance of the ovaries – where ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs (but despite the name, women do not actually have cysts if they have PCOS)

Source: NHS – polycystic ovary syndrome

Personalised care

Personalised cancer care means providing patients with access to care and support that meets their individual needs – from the moment they receive their cancer diagnosis – so that they can live as full, healthy and active a life as possible.

This can include helping people to access financial, emotional, psychological and social support as well as providing them with information on managing their lifestyle, treatments and therapies available.

Source: NHS England – personalised care

Physiotherapy

Physiotherapy helps to restore movement and function when someone is affected by injury, illness or disability. It can also help to reduce risk of injury or illness in the future. It takes a holistic approach that involves the patient directly in their own care.

Source: NHS – physiotherapy

Postcode lottery

The term postcode lottery describes a situation in which the standard of services like medical care and education received by the public varies from area to area, depending on the funding policies of various health boards, local authorities and other organisations.

Source: Collins dictionary – postcode lottery

Prehabilitation

Prehabilitation (prehab) means getting ready for cancer treatment in whatever time you have before it starts. It is a programme of support and advice that some NHS hospitals are using. It covers 3 particular parts of your health:

• what you’re eating and your weight

• physical activity or exercise

• mental wellbeing

Source: Cancer Research UK – what is prehabilitation?

Psychosocial oncology

Psychosocial oncology is a cancer specialty that addresses the variety of psychological, behavioural, emotional and social issues that arise for cancer patients and their loved ones.

Source: American Psychological Oncology Society – what is psychosocial oncology?

Radiotherapy

Radiotherapy is a treatment where radiation is used to kill cancer cells.

Source: NHS – radiotherapy

Remission

Remission is a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

Source: National Cancer Institute – remission

Seldom heard groups

The term ‘seldom-heard groups’ refers to under-represented people who use or might potentially use health or social services and who are less likely to be heard by these service professionals and decision-makers.

Source: Healthwatch – how to co-produce with seldom heard groups

Stage 1, 2, 3 and 4

A number staging system is used to describe the size of a tumour and how far it has spread.

The number stages are:

• stage 0 – the cancer is where it started (in situ) and has not spread

• stage 1 – the cancer is small and has not spread anywhere else

• stage 2 – the cancer has grown, but has not spread

• stage 3 – the cancer is larger and may have spread to the surrounding tissues and/or the lymph nodes (or ‘glands’, part of the immune system)

• stage 4 – the cancer has spread from where it started to at least one other body organ, also known as ‘secondary’ or ‘metastatic’ cancer

Not all cancers can be staged.

Source: NHS – what do cancer stages and grades mean?

Two-week wait

A ‘2-week wait’ referral is a request from a general practitioner (GP) to ask the hospital for an urgent appointment for a patient, because they have symptoms that might indicate that they have cancer.

Source: Hull University Teaching Hospitals NHS Trust – urgent 2-week wait referral to hospital