According to Jim Blair (2017), a Consultant Nurse in Learning Disabilities, Diagnostic Overshadowing: See Beyond the Diagnosis: “Diagnostic overshadowing occurs when a health professional assumes that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors.”

This includes:

• Biological—injury, acute onset of a condition, exacerbation of a long-term condition.
• Emotional—regulation, anxiety, stress, fear, pain.
• Communication—expressed, received, cues.
• Sensory—over-stimulating environment.

For people with learning disabilities, evaluating pain and suffering involves more than considering their mental and physical health or the effects of ageing. It requires an understanding of their individual lifestyle, environment, and personal history – including past experiences – all of which can influence how their pain is expressed and perceived. This highlights why accurate pain indicators and self-reporting methods are so critical.

Many people with a learning disability are unable to self-report and have difficulty communicating that they are experiencing pain. Some may assume that a behaviour a person is displaying is a characteristic of their learning disability, rather than recognising they could be in pain.

To reduce the risk of underlying health conditions being undiagnosed and untreated, people with a learning disability may need others to interpret their ways of communicating and recognise when they are in pain. It is therefore important to understand someone’s usual presentation and behaviour and how these may change when the person is experiencing pain.

The following indicators may help you recognise if someone is in pain. This is not an exhaustive list, and indicators should not be considered in isolation, as pain can often be multidimensional in nature:

• Physiological changes: Increased blood pressure, pulse, breathing and temperature; decreased oxygen saturation, changes in frequency and type of epileptic seizures, changes to urinary or bowel output and appetite changes.
• General appearance changes: For example, changes to skin colour, sweating, new pressure areas, weight loss.
• Facial expressions changes: Tensing, frowning, grimacing, teeth clenching, lip biting, limited smiling or eye contact.
• Body language changes: Fidgeting, rocking, guarding a part of the body, posture change, sleeping position changes, purposeless or restricted movement.
• Vocal sound changes: Whimpering, groaning, crying, changes to pitch and volume.
• Behavioural changes: New-onset confusion, irritability, pacing, restlessness, hitting self or others, holding a particular area in the body, alteration in usual patterns and routines, including becoming withdrawn, quiet, unsociable, changes to sleeping patterns.

Evidence shows that people with a learning disability experience greater morbidity and preventable premature death due to ill health going undiagnosed and untreated.

Through the development of this guidance, clear gaps have been found around benchmarking for future practice in pain assessment and the identification, assessment and diagnostic overshadowing of pain for people with a learning disability. Here at the RCN, our key recommendations are as follows:

• Use person-centred, holistic assessment: Explore the individual’s experience of pain across physical, psychological, social, and spiritual domains. Establish baseline behaviours to detect changes.
• Apply specialist assessments: Identify the type of pain (acute, chronic primary, chronic secondary) using validated tools, while listening to the individual and liaising with family/informal caregivers.
• Develop shared management plans: Base strategies on shared decision making, combining non pharmacological and pharmacological approaches.
• Work alongside GPs: Support and standardise awareness and practices in relation to pain and people with a learning disability.

Supporting evidence

• People with severe and profound learning disabilities may be more sensitive to pain (PDF) than their counterparts.
• Longevity means that people with a learning disability are experiencing age-related conditions, many of which cause physical pain.
• In dementia care, changes are often attributed to disease progression rather than other causes. Similarly, people with a learning disability, autism and dementia experience diagnostic overshadowing, leading to untreated ill health.
• People with Down’s Syndrome experience age-associated conditions from their early 40s onwards and have a higher incidence of specific health disorders than the general population.
• Pain and suffering are influenced not only by health and ageing, but also by lifestyle, environment, and past life events, which shape how pain is expressed and perceived.