Many people affected by cancer are not getting the emotional or psychological support they need; the most deprived people are even less likely to have these needs met. Groups who are particularly vulnerable to lower health literacy include older adults, people with low-income earnings, people who are digitally excluded, people living in regional areas, people who have been employed in manual labour, people at an educational disadvantage, and those with low socioeconomic status. Lower health literacy is associated with fewer doctor’s visits and worse health.
Informed by a prior quantitative study of over 1,000 patients and carers, as well as qualitative interviews of 17 healthcare professionals, 10 carers, and 30 patients, we designed and distributed a follow-up survey to identify unmet needs. This survey asked about the satisfaction with current resources that were available and examined new options for future services.
|Digitally excluded people unable to access online materials||We designed a suite of full colour booklets that we post for free anywhere in the UK. These can be ordered online by healthcare professionals or patients, or over the phone|
|Awareness of the symptoms bladder cancer in people who have been employed in high-risk professions||We partnered with a workers’ union to send information to occupational health and safety officers, and with NHS England to raise awareness of symptoms. We produced posters for toilet doors|
|People living in regional areas are unable to attend face-to-face support groups||We host monthly online Zoom support groups; we also offer a Bladder Buddy system – where two people with similar diagnoses can have a telephone conversation.|
|Lack of awareness of free support services||We produce nurse contact cards, so that on diagnosis the nurse can give the patient their information, and information about peer support services.|
|People at an educational disadvantage||Our website uses simple language, with clear diagrams, and plenty of photos of real patients|
|Lack of availability of healthcare professionals for follow-up questions||Our moderated private online forum of over 5,000 patients and carers offers 24-hour support, 7 days a week|
|Feelings of isolation||We produce a free monthly newsletter, six-monthly Fight magazine posted for free around the UK, awareness merchandise, and organise community Wee Walks every May|
We developed strategies allow us to improve the health literacy of deprived populations affected by bladder cancer. This improves their self-management skills and boosts their ability to engage in shared decision-making, which means they have better access to timely, patient-centred, value-based care, and a more positive patient experience.