A learning disability is “a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood” (Department of Health, 2001). Learning disabilities are a life-long condition and affect everyone differently.

There is a lower uptake for both cervical and breast screening for women with learning disabilities. A range of factors may affect this. Assumptions made about someone’s capacity to undertake screening; lack of accessible information to help someone decide to have screening or not; no reasonable adjustments in place to maximise appointment success.

Further resources

• GOV.UK (2022): National Disability Strategy
• Public Health England (2021): Population screening: reducing inequalities for people with a learning disability, autism or both.

Sarah’s story: Sarah had a learning disability and also experienced anxiety and depression. She had two failed attempts to have cervical screening at her GP surgery, despite lots of reassurance from the practice nurse. As a result, the nurse referred Sarah to the Learning Disability Nursing Team for support. 

The learning disability nurse spoke to Sarah and learnt that she did not feel ‘safe’ at the surgery but said she would have the cervical screen if she could have it at home. The learning disability nurse liaised with the surgery, and together with the practice nurse, arranged a joint visit to Sarah’s house. Sarah was able to lay on her bed with her favourite blanket covering her legs. The learning disability nurse held Sarah’s hand, talking her through what was going to happen. With time and encouragement, Sarah was supported to successfully have her cervical screen in the comfort of her own home.

Making simple, small changes (or reasonable adjustments) can make a big difference to the outcome for a patient. Knowing how someone communicates and whether they need accessible information is a good starting point. Other common adjustments that you may find helpful is to allow more time for appointments, including meeting before a test/check to explain what is going to happen and finding a quieter area for someone to wait.

Further resources

• Public Health England (PHE) (2019): Supporting women with learning disabilities to access cervical screening.
• PHE (2020): Reasonable adjustments for people with a learning disability.

Nurses should offer women with learning disabilities the same opportunity to attend health checks/tests as we do for any other women. To help women make their own decisions, use information that is easy to understand. Where a woman lacks capacity, the best interest process should be followed. If you're not sure about someone's abilities, you can ask your local learning disability team for help. 

RCN resources 

• RCN: Nursing guide for supporting people with learning disabilities.
• RCN: Learning Disability Nursing Forum.
• RCN: Learning Disabilities clinical resource.

Since August 2016, it is a legal requirement (Health and Social Care Act 2012) for all organisations providing NHS care and/or adult social care to follow the Accessible Information Standard. This sets out a 'specific, consistent approach' to make sure that information and communication is easy to understand and accessible to support the 'needs of patients, service users, carers and parents with a disability, impairment or sensory loss'.

A hospital passport is an example of how this can be achieved. This tells any health care professional about the patient’s learning disability or specific needs, their preferred way to communicate and how to make things easier for women to get the care they need. Many trusts have their own version of hospital passports, but you can download your own passport by visiting the Mencap website.

The National Institute for Health and Care Excellence (NICE) provide guidelines for health care professionals on how to improve patient experience to ensure that all patients regardless of their 'physical or learning disabilities, sight, speech or hearing problems and difficulties with reading, understanding or speaking English' have access to making informed decisions about their care.