Access to pain management is a fundamental human right (PDF), and yet, so often it is not managed well, resulting in unnecessary suffering that impacts on quality of life. The International Association for the Study of Pain (IASP) defines pain as: “An unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage.”

The IASP definition provides us with an internationally agreed definition of pain that recognises the physical and emotional domains of the pain experience. These are not new concepts, and our thinking about what pain is often refers to the seminal work of Margo McCaffery (1968), in which pain was defined as follows: “Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.”

McCaffery (1968) captures the essence of the individual nature of pain, and the IASP definition builds on this work. This enables us to see the true extent of the pain experience, recognising that it is made up not only of the physical cause but also of psychological and social factors.

This concept is also known as the biopsychosocial model or the total pain experience (Galligan 2021). When supporting individuals in pain, it is essential to keep these definitions at the forefront of our practice and recognise that each person's experience of pain is uniquely their own. As nurses, our role is to understand and respond to that experience in a way that encompasses its physical, emotional, social and spiritual dimensions.

Pain is a highly subjective phenomenon that affects people of all ages and groups. It is also a personal experience that can negatively impact individuals.

Although pain is a physical symptom, it often comes alongside several social factors. People with a learning disability may experience deprivation, isolation and limited access to services.

These challenges are further complicated when individuals are unable to clearly express discomfort or pain, making appropriate care and support even more complex.

Additionally:

• For people with a learning disability, pain is a multidimensional phenomenon and cannot be confirmed through a single sign.
• When developing a care and support plan, it should include non-pharmacological management of pain, healthy lifestyle advice and specialist referrals. This can be a challenge when supporting people with a learning disability due to the person’s individual understanding and recognition of pain.
• There may be assumptions around the person’s level of learning disability and complex communication needs, resulting in unsafe and unreliable self-reporting. This comes alongside reliance on family carers and agency staff to identify cues and behaviours that may indicate pain and decide whether to act on them.
• We are told that the subjective judgement of pain by others is highly inaccurate, and the severity of estimated pain is consistently incorrect, compared to self-reporting. However, when assessing pain, increased familiarity with each person results in a more accurate judgement than when made by a stranger.

For more information, visit the International Association for the Study of Pain website.

The consideration of pain is briefly mentioned throughout all learning disability NICE guidance, but it does not specify what pain assessments should be completed.

For example:

• The NICE guideline ‘Care and support of people growing older with learning disabilities’, emphasises person-centred care, with a focus on recognising evolving needs, proactively planning, and ensuring access to health and social care services as they get older.
• Non-learning disability specific NICE guidance ‘Dementia: assessment, management and support for people living with dementia and their carers’ briefly mentions pain, but lacks clear guidance on recognition and assessment, including those with learning disabilities. A review of its supporting evidence found many grey literature sources, mainly on broader palliative care strategies rather than pain specifically. However, it highlights that pain recognition and treatment remain inadequate, with similar trends for those with learning disabilities.
• In comparison, the NICE Guidance ‘Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain’, talks extensively about person-centred pain assessment, possible causes of pain, and the effects on an individual’s life. However, it does not offer tools or assessments to support pain identification. The only recommendation in relation to pain was the use of pharmacological interventions and the management of chronic pain.
• The Gold Standard Framework refers to the requirement of a person-centred assessment due to its individual approach, and therefore challenging to measure. Person-centred care encompasses, where possible, asking the person about their pain and aligning with the benchmarks in the NICE guidance. This is a challenge when supporting people with a learning disability due to the person’s individual understanding and recognition of pain, which has been found to result in unsafe and unreliable self-reporting, alongside the decision on whether to act on these cues.
• Generic NICE guidance was chosen to support learning disability clinicians to understand the medical model of pain management. This was done in conjunction with specialist current evidence-based approaches to manage the pain needs for people with a learning disability.

Negative attitudes and discrimination often influence the poor identification and assessment of pain. Additionally, there may be personal biases and attitudes to pain and the belief that people with a learning disability have a higher pain threshold than the general population.

However, recent studies have indicated that, contrary to this, people with severe and profound learning disabilities have increased sensitivity to pain than their counterparts. Additionally, longevity means that people with a learning disability are experiencing the conditions and illnesses of older age, some of which will cause physical pain.

For example, research has found that 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 rest of the general population.