Developed with input from people with a learning disability and their carers, the resource aims to reduce distress and suffering. This is especially important because there is no single, straightforward way to assess pain in this group.

Here, you will find guidance on selecting the most suitable pain assessment tools for individuals from the age of three through to the end of life. We explain the principles of effective pain assessment and management and address the challenges of assessing pain in people with a learning disability across different care settings.

The resource also reviews currently available tools, outlines their appropriateness and signposts to relevant local guidelines and practices. This includes a decision framework to help select the most appropriate pain assessment tool, depending on the individual’s needs.

What is not covered:

• the use of specific pain medications
• pharmacological information
• detailed prescribing guidance (management should follow local guidelines and clinical practices).

This resource has been developed to address a recognised evidence gap in this important area of care. In 2001, Chibnall and Tait (PDF) highlighted that the identification and treatment of pain in people with a learning disability was significantly lower than in the general population.

This finding was later confirmed by Blair (2017, PDF) and Whiteman (2024) in their work on pain and diagnostic overshadowing. As a result, pain often goes unrecognised in this group. Although specialist pain assessments exist, there is limited research on their reliability and accuracy for people with learning disabilities—particularly when self-reporting is not possible.

Complexity of pain assessment

People with a learning disability may experience higher levels of chronic pain due to multiple health and sensory conditions. Communicating this pain can be difficult, and acute pain responses may be masked, making assessment highly complex.

Communication challenges

The inability to communicate verbally does not mean an individual is not experiencing pain or does not require treatment. Engaging with informal caregivers involved in the person’s care is vital to support decision-making, alongside the information provided in this resource. The importance of this is reflected not only in the literature but also in lived experiences:

“It is stressful when… becomes very agitated and aggressive and we don’t know what is wrong but guess it’s pain.”

Ongoing need for guidance

Overall, statistics show that the identification and treatment of pain in people with a learning disability remain significantly lower than in the general population.

While specialist pain assessments exist, there is still a lack of guidance on selecting appropriate tools—especially when self-reporting is not possible, and understanding underlying pain mechanisms is essential.

Importantly, pain assessment tools should always be used alongside a holistic assessment that captures all aspects of the individual’s total pain experience.

This resource offers a comprehensive overview of supporting pain assessment in people with a learning disability across various care settings. As part of this larger resource, a decision framework has also been developed to help with selecting a pain assessment tool.

The Framework provides guidance on which pain assessment tool may be appropriate for the individual's needs.

Ben Thomas – Mental Health & Learning Disability, RCN Wales

Ruth Northway (FRCN) – Professor Emerita of Learning Disability Nursing

Maureen Roberts – Learning Disability Consultant Nurse, Southern Health and Social Care Trust

Carol Dale – RCN Professional Lead Independent Health & Social Care

Kirsteen Cowling – Senior Staff Nurse, Children’s Hospices Across Scotland, Children’s Hospices Across Scotland

Sandra Campbell (FRCN) – Independent Nurse Consultant

Scott Taylor – Nurse Consultant, Learning Disabilities

Aimee Cross – Learning Disability Nurse

Anna Terry – Team Leader, Neonatal Care; Acorns Children’s Hospice

Esther Smith – Advanced Clinical Practitioner, LSCFT All-Age Learning Disability Services

Felicia Cox (FRCN) – Nurse Consultant, Pain Management Services – Nursing Research Lead

Karin Cannons – Nurse Consultant and Service Lead – Pain Management

Martin Galligan – Lecturer Practitioner, Programme Lead MSC Advanced Clinical Practice in Cancer Care

Rachel Desai – Nurse Consultant, Pain Team, Birmingham Children’s Hospital

Sarah Sherwood – Quality Improvement Lead Nurse

Serena Jones – Acute Liaison Specialist Nurse, Learning Disabilities and Autism

University hospitals of Liverpool group

Vicky Sandy-Davis – RCN Professional Lead Care Homes