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New bowel cancer screening easy guide published thanks to input from our experts by experience

Composite image made up of 4 photos of people with learning disabilities looking at and commenting on draft screening materials at a workshop held by the North East and Cumbria Learning Disability Network
People with learning disabilities are at the centre of the process to develop national easy guides to population screening

Today, PHE Screening has published its updated national easy guide to bowel cancer screening.

Evidence shows that people with a learning disability are less likely to access screening, so the new leaflet aims to make sure bowel cancer screening is equally accessible to them.

This is just the latest example of a successful collaboration between PHE Screening and the North East and Cumbria Learning Disability Network Macmillan Cancer Project. In developing the new easy guide, the PHE team travelled north to work with people from the network who use easy read materials – our experts by experience – and their carers.

Their input has ensured the easy guide meets the needs of people with learning disabilities. It is written in clear, simple sentences and uses photos and other artwork to illustrate each important message.

PHE also worked closely with Bowel Cancer UK in developing the new leaflet, which explains:

  • why the NHS offers bowel cancer screening screening
  • how to do the test
  • possible results
  • how to help keep your bowel healthy

Bowel Cancer UK is funding a national print run of the new easy guide, so some hard copies will be made available. Meanwhile, local screening providers can also download and print off the new leaflet from GOV.UK as and when needed.

Project helps improve services along the whole cancer pathway

Contributing to the development of the new easy guide is just one way the North East and Cumbria project helps to improve cancer services for people with a learning disability, their families and carers in the region.

We look to improve services along the whole cancer pathway. Part of that work has been to develop a supportive pathway for bowel cancer screening participants with a learning disability and cervical screening support packs for professionals.

The success of our project success is down to:

  • effective partnership working
  • keeping people with a learning disability at the centre of all our work using best practice guidelines
  • improving support for people with a learning disability to help them make informed choices and, where required, for professionals to make best interest decisions
  • working to ensure organisations respect an individual’s right to confidentiality
  • ensuring organisations maintain good information governance while understanding the importance of sharing information to support a person’s care

I am particularly proud of our Be Cancer Aware peer education project.

This brought together people with a learning disability from across the North East and Cumbria to develop and design Be Cancer Aware training.

The group went on to train as trainers and are now delivering Be Cancer Aware across the region to groups of people with a learning disability, their carers and families.

Another important part of our work is sharing learning and ideas. Our latest project report focuses on some of our successes over the past 18 months. It includes links to resources and projects from across the country that presented at the learning and sharing conference we held in January.

For more information on the North East and Cumbria Learning Disability Network, Macmillan Cancer Project you can contact me at

PHE Screening blogs

PHE Screening blogs provide up to date news from all NHS screening programmes. You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs. If you have any questions about this blog article, or about population screening in England, please contact the PHE screening helpdesk.

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