This resource is designed to support nurses and other professionals caring for people with a learning disability who may be experiencing pain. It also offers practical guidance for anyone working in health or social care, including families and carers.

• Learning disabilities pain assessment resource
• Why this resource has been developed
• Decision framework for pain assessment in patients with learning disabilities
• Decision support tool
• Acknowledgements

Pain is a complex, deeply personal experience, and understanding it is essential to delivering compassionate, effective care.

• What is pain?
• Challenges in pain assessment and management
• NICE guidance on assessing pain in people with learning disabilities
• Pain and health inequalities in people with learning disabilities

Diagnostic overshadowing is a common experience for people with learning disabilities. This is where pain symptoms are misattributed to their learning disability, posing a serious risk to their health. The consequences include missed diagnoses of potentially serious illnesses.

• Diagnostic overshadowing and pain assessment
• Pain indicators and self-reporting
• Benchmark for future practice in pain assessment

Although there has been the development of standardised pain assessment tools for people with a learning disability, there is little evidence that pain is being better assessed or managed clinically.

• Pain assessment tools for adults
• Deciding on which tool to use across different settings
• Abbey Pain Scale (acute hospital settings/residential settings)
• Distress and Discomfort Assessment Tool (DisDAT) (acute hospital settings/residential settings)
• Pain Picture Tool
• Iowa Pain Thermometer
• Bolton Pain Assessment Tool

Children and young people with learning disabilities may have significant issues with pain due to complex medical conditions. They may also have to undergo numerous painful procedures.

• Identification assessment and treatment of pain in children and young people
• How children and young people may express pain
• Challenges of pain assessment in young people

Several learning disability-specific pain assessment tools can be used for children and young people. The following five tools are highlighted as most beneficial for use with children and young people aged 3 or older.

• Pain assessment tools for children and young people
• Revised FLACC observation tool
• Paediatric Pain Profile (PPP)
• DisDAT
• TOPS – Tailored Observational Pain Screen (Emergency care/GP)
• Pain Picture
• Behavioural observation tools for children

It is important to consider the roles and experiences of family members in your pain assessment. They play a vital role in the pain assessment of those with learning disability.

• Family and carers experience of pain assessment
• Care settings (place-based care)
• Community settings
• Acute hospitals
• Learning disability liaison nurses
• Secure settings
• Children’s hospices
• Maternity settings

Some people with a learning disability struggle to communicate when using only expressive or receptive language; however, there are alternative methods of communication.

• Communication between teams patients and informal caregivers
• Hospital passport/health passport
• Reasonable adjustments
• Advocacy
• Complexity in communication
• Skills to support effective communication
• Challenges affecting communication
• Phrases to support communication

Managing pain in someone with a learning disability requires meticulous attention to detail in the assessment process. This is demonstrated in the following case studies and described using the word ‘CARE’.

• Case studies
• Case study one: Learning disability and community care
• Case study two: UTI and secondary care
• Case study three: Learning disability and outpatient clinic