Background: Cancer screening programmes reduce the incidence of, and mortality from,
cancer through early detection and intervention at a population level. People with learning
disabilities and/or autism throughout the UK face considerable inequalities in cancer screening,
and the Scottish Government have pledged to improve access to screening services for these
populations. Research naturally focuses on the more urban populations which does not
necessarily apply or translate to Scotland’s vast remote and rural geography. The Northern Isles
of Orkney and Shetland are on the periphery and provide unique challenges to population based interventions and healthcare research. This thesis aims to better understand inequalities
of access to cancer screening programmes for the learning disabled and autistic populations in
Orkney and Shetland.
Methods: A clinical audit was conducted on available GP Practice data for cancer screening
and HPV immunisation in the learning disability and autism populations of Orkney and Shetland.
This was followed by a qualitative exploration of stakeholders’ views on and experiences of
cancer screening for people with learning disabilities and/or autism. Interviews and focus groups
were analysed to develop themes using Reflexive Thematic Analysis.
Results: Rates of screening uptake are comparable to available data on the learning disabilities
populations elsewhere in Scotland but serve to highlight a greater disparity in Orkney and
Shetland, given the relatively high uptake of screening in their respective general populations.
Participants described high-level structural barriers to screening, including screening systems
and processes, uncertainty around responsibilities and decision-making, and how cancer and
cancer screening is viewed in the community. Small communities were seen as a unique
strength but were also felt to be a factor in perpetuating unhelpful myths and stereotypes.
Conclusion: Targeted efforts are essential to redress these inequities, for which we now have
evidence-based recommendations and a co-production plan.