Cancer and Serious Mental Illness: You Said, We Did involvement summary
During 2024, the Health Innovation Network South London and South East London Cancer Alliance worked closely with people with lived experience of Serious Mental Illness (SMI) and cancer to develop new online learning resources (available here) designed to help people with SMI feel more in control about cancer. This process involved working in partnership with more than 70 people with lived experience, who contributed to the project in various different ways:
- Through joining our core project team
- Through completing online surveys
- Through taking part in focus groups
- Through providing informal feedback on content
- Through co-designing content
Lived experience has shaped the project at all stages of the work. This document summarises some of the specific themes and subsequent project actions driven by the voice of lived experience who contributed to the project. We would like to thank everyone with lived experience who contributed to the project.
Structure and design approach – key themes
You told us that images and video were important to help get across information in different ways
- We worked with a lived experience contributor on our steering group to create “companion” videos which introduce different topics and summarise key information, as well as providing a personal perspective
- We introduced videos throughout the modules to aid understanding, including filming new video content with a screening team from south east London about how they can support you during your appointments
- We added an infographic summary to each module to convey the key points of the content
- We used features such as expandable accordions and bullet points to ensure that content was displayed in a way that was not an overwhelming “wall of text”
You told us that in-depth information and links to further resources helped to reassure you that you’d understood all you needed to about a topic, but that easy navigation was also essential
- We built in links to a variety of charity and other trusted sources to provide information about a wide range of different specialist topics within each of the modules
- We improved the navigation of the modules to make it easier to move between different topic areas (e.g. introducing clickable links to skip to different parts of a topic)
- We added additional navigation to make it easier to move between modules
Content – key themes
You told us that you wanted information about how a cancer diagnosis might impact your wider life (e.g. finance or personal relationships)
- We included in-depth information about a wide variety of different aspects of life which might be impacted by a cancer diagnosis and how to get support related to each of these areas
You told us that speaking to unfamiliar cancer clinicians about your mental health condition was difficult, and that this was a barrier to effective treatment
- We designed an additional module including lived experience perspectives on talking about your mental health condition
- Working closely with lived experience partners, we developed a simple conversation guide (“Why, what, how”) to help make conversations with unfamiliar health professionals easier
- This conversation guide was made available as a printable document as you told us this could also be useful
- We also made sure to highlight how the role of the cancer Clinical Nurse Specialist (CNS) could act as a consistent contact during cancer treatment
You told us that invasive procedures were a barrier to screening uptake, especially given the potential intersectionality between SMI and trauma
- We produced a video with a south east London screening team focusing on the flexibility and support on offer to help you with screening appointments
- We worked with clinical colleagues to understand potential adjustments that could be requested to the screening process, and included these in the content
- We included information about trauma-informed care standards within the screening content
You told us that getting a recommendation to use the resources from clinicians would help to establish that the resources were trustworthy
- We developed an extensive engagement plan to make sure the resources were shared with as many cancer and mental health clinicians as possible
- The Health Innovation Network and South East London Cancer Alliance are presenting the resources to a number of clinical groups at meetings over the next few months to raise awareness of the resources
You told us that it was important for people with SMI to have medical appointments on their own terms, and that friends and family often played a role in supporting during appointments
- We clarified with cancer services that – for most appointments – having an advocate or companion accompany you is fine. We included advice on how to check this with individual cancer services within the content
- We included links to this module throughout the content
- We added additional navigation to make it easier to move between modules
Read the patient resources
The Cancer and Serious Mental Illness eLearning resources have been designed to improve understanding and access to cancer support.