Cancer Screening project for people with learning disabilities

Healthwatch Barnet, Barnet Mencap and Expect the Best carried out a project in 2018 to explore the experiences of people with learning disabilities in accessing cancer screening services, focusing on cervical, breast and bowel cancer screening. The project aimed to understand barriers to participation, improve awareness, and identify ways to make screening services more accessible and effective. 

The report highlighted significant inequalities in cancer screening uptake for people with learning disabilities. National and local data showed that women with learning disabilities in Barnet were much less likely to attend cervical and breast screening than women without learning disabilities. Cervical screening uptake was particularly low, with only 23% of eligible women with learning disabilities screened compared with 74% of women without learning disabilities. 

The project used surveys, focus groups, engagement events and quality checks with GP practices. However, engagement proved difficult. Attendance at cancer awareness events was low, only a small number of surveys were completed, and many GP practices and screening services were reluctant or unable to participate fully in the project. 

The report found that communication barriers were a major factor in low screening uptake. Many invitation letters were not provided in accessible formats, making them difficult for people with learning disabilities to understand. Awareness of cancer screening and cancer risks was often limited, and many participants had never seen easy-read information about cancer screening. 

Cervical screening emerged as the area with the greatest challenges. Half of survey respondents said they had not had a smear test within the recommended timeframe, while only 35% of eligible women reported attending screening. Common reasons for not attending included fear, embarrassment, anxiety about pain, difficulties understanding the procedure, and concerns around consent and capacity. 

Participants reported that support from another person, more time with healthcare professionals, better explanations and accessible information would make cervical screening easier. Some women found it reassuring when nurses explained procedures and showed them the equipment beforehand, although others found this increased anxiety. 

Breast screening also presented challenges. Respondents described concerns about pain, fear of the machinery, travel difficulties and physical accessibility. Some people were unable to use screening equipment because of mobility issues. Participants felt that greater support, accessible information and practical assistance with appointments would improve uptake. 

Bowel screening had relatively higher participation rates. More than half of surveyed respondents who received a screening kit completed it, often with support from carers, family members or healthcare professionals. However, many found the test unpleasant, embarrassing, difficult to understand, or challenging to complete. Participants said clearer instructions and support from another person would help. 

The quality checks identified examples of good practice at local GP surgeries. Longrove Surgery and Mountfield Surgery offered reasonable adjustments such as extended appointments, annual health checks, support from carers, accessible information, home visits where appropriate, and opportunities to discuss screening with familiar staff. 

The report emphasised that annual health checks could play a much greater role in promoting cancer screening. Many participants had attended annual health checks but had not discussed cancer screening during those appointments. 

Case studies illustrated how fear, communication difficulties and the need for personalised support affected individuals. They also demonstrated the importance of trusted carers, familiar healthcare professionals, flexible approaches and anxiety-reducing techniques when encouraging participation in screening programmes. 

Feedback on easy-read resources was positive. Participants said that easy-read booklets, videos and visual aids helped them better understand cancer, the purpose of screening, and what to expect during procedures. Many reported learning information they had not known previously and felt more confident about screening after reviewing the materials. 

The report concluded that there are substantial barriers to cancer screening for people with learning disabilities, but many of these could be reduced through improved communication, accessible information, reasonable adjustments and greater support from healthcare providers. It recommended sharing best practice across GP surgeries, increasing use of easy-read materials, improving specialist support from learning disability teams, raising awareness among carers and support providers, developing accessible screening invitations, strengthening links between annual health checks and cancer screening, and improving multi-agency collaboration to address inequalities in cancer outcomes. 

The report also called for the issue to be prioritised by the Clinical Commissioning Group and Health and Wellbeing Board, recognising that improving cancer screening uptake among people with learning disabilities would require coordinated action across health and social care services.