Toolkits launched to support women with learning disabilities attend breast and cervical screening

NHS England and NHS Improvement commissioned Healthwatch Blackpool as part of a consortium of local Healthwatch known as Healthwatch Together which includes neighbouring local Healthwatch in Blackburn with Darwen, Cumbria and Lancashire. Healthwatch Together undertook a joint project to support potential changes to service delivery in cancer screening programmes amongst women with learning disabilities. Healthwatch Together wanted to find out what local women with learning disabilities, their families, and carers think about breast and cervical screening and hear about their experiences.

People with learning disabilities have significantly higher rates of mortality and morbidity than the general population. There are significant differences between the uptakes of cancer screening programmes nationally and regionally between people with learning disabilities and the non-learning disability population.

The aim of the project was to gain valuable insight from women with a learning disability, and their carers, regarding access to cervical and breast cancer screening programmes whilst in the community. Healthwatch Together wanted to learn about the challenges people might face, understand the barriers to attending screening, and to hear their thoughts about improvements in the health and care system for the future.

Healthwatch Together undertook engagement activities with the learning disability community across Lancashire and South Cumbria, delivering a programme of engagement through contact with:

  • Self-advocacy groups
  • Supported living meetings
  • Secure services (e.g. The Harbour in Blackpool and Merseycare Whalley in Clitheroe)
  • Parent/carer forums

 Heathwatch Together considered the perspectives of service providers, engaging with local GPs and Clinical Commissioning Groups in order to establish the perceived barriers to screening and what would support them to increase uptake in their area.

The findings from engagement were utilised to draw up a draft localised toolkit to support appropriate communication messages for cervical cancer screening and breast cancer screening. Through a series of co-production workshops, two ‘easy read’ toolkits were designed with women, families, carers and professionals for both breast and cervical screening programmes.

The toolkits include; what to expect from a screening appointment, information for professionals, families and carers, and useful prompts to encourage meaningful and helpful communication. All information has been designed based on feedback and the gaps identified within current communication resources. 

What’s next?

Toolkits will be shared with women with learning disabilities and their carers to hopefully support people to feel informed and empowered to attend screening appointments. Learning from our conversations will be shared with GP practices so they can support patients to make an informed choice about screening. NHS England and Healthwatch Together will work with services to share the findings and support the implementation of the toolkits.

Healthwatch Blackpool is the public voice for health and social care and exists to make services work for the people who use them, believing that the best way to do this is to provide people with opportunities to share their views and experiences. Their focus is on understanding the needs, experiences and concerns of people of all backgrounds and ensuring everyone has the chance to be heard.Healthwatch Together hope that this project provides a great example for the health and social care system generally, and encourages those decision makers to put the public voice at the heart of all planning and commissioning of local care.

NHS England has a responsibility to effectively commission public health immunisation programmes. Whilst this has been executed effectively over the last four years, challenges remain in improving the coverage and uptake of some programmes (cervical cancer screening and breast cancer screening), particularly in some defined groups (women with learning disabilities).

The Toolkits can be accessed by clicking this link:

Sarah Thornley, Project Officer, leading the project for Healthwatch Blackpool said:

“We feel this has been a positive experience where local Healthwatch work together with women with learning disabilities, their carers, services and professionals to co-design the toolkits.

This joint working provides the four local Healthwatch organisations with valuable learning about how we work collaboratively on behalf of the citizens of Blackpool and across with wider area of Lancashire and South Cumbria.

We hope that these toolkits will be used by many women and professionals to help to increase the up-take of cervical and breast screening for women with disabilities. We have been astounded at the amount of people talking about the project and our toolkits and feel this is already evidencing impact. We look forward to formally publishing and sharing the toolkit via our networks.  A copy of the report and toolkits can be obtained via our website

NHS England and NHS Improvement Comment:

“We hope that women with learning disabilities, their healthcare professionals, family and carers will find these guides helpful to explain cervical and breast screening. They have been produced by Healthwatch Together in true partnership with the women involved in the project and we hope they will have a far-reaching impact.”