Through our two-year programme with NHS England North West, we identified key barriers preventing people with learning disabilities from accessing breast and cervical screening and implemented pilot projects that improved data accuracy, enhanced patient support, and increased screening accessibility across Cheshire and Merseyside, Lancashire and South Cumbria.

Background

People with a learning disability are more likely to die earlier and are at higher risk of preventable and treatable illnesses. They also have lower rates of cancer screening compared to those without a learning disability, highlighting the need for targeted improvements in screening access and uptake.

The NHS England North West team sought to review options for improving access to and uptake of breast and cervical screening programmes for people with learning disabilities and/or autism across Cheshire and Merseyside, Lancashire and South Cumbria. The objective was to identify challenges and barriers that individuals with learning disabilities may face along the breast and cervical screening pathway, forming the basis for recommendations to enhance service accessibility and effectiveness.

Action

Our Improvement Unit worked alongside NHS England North West to deliver a two-year programme of work, including programme and oversight board delivery. This was divided into two parts.

Part 1: Independent whole-system review

The review examined the journey of individuals with learning disabilities from being identified as eligible for screening, receiving an invitation, attending an appointment, and obtaining results. It was informed by current evidence and stakeholder engagement across the region.

Part 2: Development, implementation, and evaluation of pilot projects

Findings from the independent whole-system review informed the development of pilot projects aimed at improving access to and uptake of breast and cervical screening across Cheshire and Merseyside and Lancashire and South Cumbria.

Impact

The two-year programme involved extensive engagement with breast and cervical screening programme teams, key stakeholders, and representatives with lived experience. It resulted in the delivery of five pilot projects, including:

• The development of a data cleansing process for GP practice learning disability data
• The creation of an insight and support tool for supported living providers
• The implementation of pre-appointment call or triage pilots across breast and cervical screening providers
• A review and improvement of virtual tours to provide a visual reference for individuals before attending screening appointments
• The regional identification and sharing of best practices
• The development and publication of EASY Read materials to support people with learning disabilities in engaging with screening programmes

The pilot projects provided the system with a range of options to address key barriers preventing individuals with learning disabilities from accessing screening services. The findings offer practical, scalable solutions that can improve screening accessibility, helping to ensure that more people with learning disabilities receive early detection and treatment for preventable diseases.

For more information

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