Cancer strategy: consultation analysis

Question 16

Question 16A

In your experience, are there aspects of cancer diagnosis, treatment or care that affect people from marginalised groups differently? If there are negative effects, what could be done to prevent this happening?

Please consider the 'protected characteristics' of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation.

There were 150 responses to this question (87 were from individuals and 63 from organisations).

Age

The most frequently occurring theme within the responses was where respondents would discuss inequalities surrounding age. Many respondents suggested that younger people are disadvantaged throughout the cancer pathway as they are often less aware of symptoms, less engaged with cancer services and experience late-stage diagnoses more frequently.

"Younger people often seem to be diagnosed later due to "being too young for cancer"." (Individual response)

Respondents also felt that older people are disadvantaged by the current cancer system as they are more likely to be at risk for some cancers but are often denied access to some treatments based on their age. There was a general feeling that older cancer patients are less of a priority when it comes to cancer care.

"Outcomes for older adults are improving at slower rates, they are less likely to access evidenced based care and are less likely to have access to other services such as specialist nurses. We can ensure that the cancer workforce are educated in looking after older adults. Older adults must be appropriately represented in clinical trials. […]" (Organisation response)

Ethnicity, culture and religion

The next most common theme regarded ethnicity, culture and religion. Respondents felt that people from ethnic minority backgrounds were less likely to be diagnosed as they believed there to be reluctancy to engage with cancer services and seek screening. Respondents also suggested that individuals from ethnic minority backgrounds may have developed a mistrust of practitioners based on previous negative experiences.

"Some marginalised groups such as ethnic minority groups can have a mistrust in medical professionals this can be evidenced in vaccine hesitancy with the Covid vaccination programme, consideration should be given that some of our services are inaccessible for many groups of society. […]" (Organisation response)

Respondents also felt that certain cultures and religions view cancer as a 'taboo' subject which discourages engagement and they called for 'community champions' within these groups to help with this issue.

"For some religious/belief groups admitting to finding something or going to a doctor's & discussing very private matters may be very difficult, especially with the opposite sex." (Individual response)

Sex and gender identity

Another common theme within the responses related to sex and gender identity. Respondents often cited that women are treated unequally within the cancer system by being misdiagnosed due to not being taken seriously about symptoms.

"Woman's health is still incredibly poorly covered. Symptoms are often dismissed by GPs. Specialist woman's health services must be developed in local communities." (Individual response)

Respondents also commonly suggested that transgender cancer patients can be disadvantaged due to a lack of resources and advice about screening and other diagnostic challenges. They also felt those who have had gender reassignment may be reluctant to engage with cancer services.

"Mandatory training to NHS staff around how to be inclusive to transgender population. We had a talk from our professional body that made it change wording on our documentation amongst other things." (Individual response)

Communication barriers

Lastly, respondents often commented on the communication barriers that can face some cancer patients. They felt that for patients whose first language is not English, the system can be difficult to navigate, and information is often inaccessible. Respondents suggested that this causes problems with informed consent and leads to a lack of understanding of consequences of treatments.

"Timely accessibility of information for people who do not speak/read English as a first language. An accessible catalogue of available resources would be useful, or an IT software system." (Organisation response)

Respondents called for a greater number of readily accessible translators and interpreters for those with more apparent communication needs.

"Language barriers are difficult. Translators are available in some circumstances but financial pressures mean we are encouraged to use telephone services which lose the human element and no-verbal communication. It is hard to get written information in other languages with only broad topics available. […]" (Individual response

Question 16B

Similarly, is how we manage cancer different for wealthy or poor people? What could be done to do this better?

Please consider the impact of socio-economic inequality.

There were 167 responses to this question (103 were from individuals and 64 from organisations).

Accessibility

The most common theme identified within the responses regarded accessibility issues experienced by those from a lower income socio-economic background. Respondents frequently expressed concerns over the financial, physical and emotional burden of travelling to and from appointments. It was commonly suggested that cancer services should provide patients with transport or reimbursement for the associated costs.

"Supporting access for those from lower income households is ensuring services are provided at a local level and not creating a postcode lottery for care. […]" (Organisation response)

"Free public travel for those undergoing treatment and their main support person/carer." (Individual response)

Respondents also commented on the accessibility of getting appointments, particularly with a GP, stating that the current system of having to call early in the morning did not support those cancer patients that need to work or have other responsibilities.

Education and awareness

The next most frequently spoken about theme related to the need for improved education and awareness amongst those from a low socio-economic background. Respondents suggested that better education and health literacy leads to patient confidence in self-advocating, navigating the cancer system and researching into treatment options themselves.

"Health literacy and self-advocacy is lower in patients from more socio-economically deprived areas. Supporting patients with "how to navigate the system" during and after a diagnosis would help address this." (Individual response)

Respondents frequently suggested that awareness campaigns in local communities should be implemented to improve engagement in the most deprived areas.

"Targeted public health campaigns that consider existing health inequalities would be beneficial to improving outcomes for leukaemia and blood cancer patients in Scotland. Tailored awareness campaigns that include communities not fluent in English, not digitally literate and people from deprived areas would make services accessible to all groups." (Organisation response)

Financial barriers and impacts

Another common theme was the financial barriers to accessing cancer services and the financial impacts of doing so. Respondents stated that patients having to take time off or being unable to work can lead to detrimental loss of income, especially for those from low socio-economic backgrounds.

"People from lower incomes households will be affected more by a cancer diagnosis, time off work, less money, difficulty in transport. Lower income households would need more financial support or general assistance." (Individual response)

It was frequently suggested that more readily accessible financial support should be available to cancer patients from low socio-economic backgrounds. Some respondents expressed concerns over the lack of financial support that is available to those patients that fall outside of the threshold when means-tested.

Question 16C

Is the experience of cancer different for people living in rural or island communities? What could be done to prevent any negative impacts?

Please consider the impact of rurality on access to and quality of cancer services.

There were 153 responses to this question (94 were from individuals and 59 from organisations).

Local and accessible cancer services

The most common theme identified within this set of responses related to the need for equitable access to cancer services for patients living rurally or offshore. A prominent suggestion was for more specialist services to be accessible locally for rural and island communities with many proposing that a 'hub and spoke model' would help to achieve this.

"Far better outreach and specialist services for rural/island communities. The attitude seems to be they choose to live where they do and if they want support they need to travel. Even a small expert team dedicated to diagnosis and referrals in these communities would support local GPs and the smaller less equipped hospitals." (Individual response)

Respondents also called for better access to screening and diagnosis centres and frequently suggested that mobile screening units could be beneficial. They also stated that access to local, effective treatments should be improved in rural and island areas, and that availability and location of GP centres needed more consideration.

"Mobile screening clinics in areas accessible to people during the course of their day-to-day activities." (Individual response)

Travel and associated costs

The next most frequently discussed theme was the distances cancer patients have to travel from rural and island areas to access care. Respondents expressed concerns over the physical and emotional impacts that travelling long distances could have on already unwell cancer patients.

"Care closer to home: transport and time taken to travel is a financial, emotional and physical burden for people in rural communities and has been consistently reported through patient feedback over time. […]" (Organisation response)

Respondents also suggested that public transport links should be improved, costs for travel reimbursed, nearby accommodation provided and financial support made available for patients living long distances away from cancer centres. It was suggested that these means of support should apply to a patient's family and carers too to reduce feelings of isolation when travelling away from home.

"Support for travel and accommodation if required to attend a big centre for some treatment. It is not possible to bring all treatments out to every centre or community setting so the patient's journey has to be facilitated as much as possible." (Individual response)

The use of digital provisions

Lastly, the use of digital provisions was commonly discussed by respondents. They stated that the use of telecommunication and implementation of interoperable IT systems would be beneficial for cancer patients living in rural or island communities. Respondents felt this would reduce the need for travel and cited Near Me as a positive example.

"There should be continued efforts to mainstream Near Me and associated technology, with virtual consulting as a routine option." (Organisation response)

However, respondents also expressed concerns over those patients living rurally or offshore who would not have adequate access to devices or broadband to engage with digital solutions. Therefore, they suggested that support would need to be offered to them as well as maintaining a form of face-to-face contact for this group of people.

"Yes. Having to travel to Inverness from the Islands is extremely challenging. Even in rural parts, internet connection can be bad so even communicating by email is difficult. Please keep landline and paper communications. And, in an ideal world, a travelling oncologist and Surgeon to do follow ups." (Individual response)