Pain and communication

Also called Pain assessment without speech, Communicating pain

Pain that cannot be said gets called behaviour. Here is how a person tells someone it hurts, where and how much, without words.

What it is

Pain communication is the person telling someone that something hurts, where, how badly and what kind of hurt it is. For a person who does not speak, every one of those steps can fail, and untreated pain in non-speaking people is one of the most common and most preventable harms in care.

The pattern is depressingly familiar. Somebody becomes withdrawn, or agitated, or stops eating, and the record says "behaviour". Weeks later it turns out to be a tooth, an ear, constipation or a fracture.

Who it can help

Anyone who cannot reliably report pain in words: people with a learning disability, dementia, profound and multiple learning disabilities, children who are not yet talking, and AAC users whose system has no pain words on it. Their families, who usually know the signs first, and staff, who need a way to record them.

It is not a diagnostic tool. It gets the pain noticed and described; a clinician still has to find the cause.

How it works

Three routes, used together. The person's own words: a board with "hurt", "pain", "sore", a body map to point at, and a scale from a little to a lot. The body parts and health words entries list what to add. A person who has "it hurts" on their system and has been shown how to use it will use it.

The person's signs: every individual has a pain signature, a face, a posture, a change in sleep, a way of holding a limb, and the people who know them can write it down. That written list is what a new carer or a hospital doctor needs, and it belongs in the communication passport.

A structured tool: the DisDAT (Disability Distress Assessment Tool) records what a person looks like when content and when distressed, so a change can be spotted; the Abbey Pain Scale is used for people with dementia; the FLACC scale for children. All are free and none needs the person to speak. Staff should know which one the person uses.

Start from the assumption that a change in behaviour is pain until proven otherwise. See behaviour as communication.

Getting started

This week, write the person's pain signature on one page: what they do, what changes, what it has turned out to be before. Give a copy to everyone who cares for them.

Put pain words on the board if they are not there: hurt, sore, a lot, a little, and the body parts. Teach them the same way you would teach any word, by modelling them when the person is not in pain, so that they are available when they are.

If you think a person is in pain now and the service says behaviour, ask for a GP appointment and say "I would like pain excluded first". Write that request down.

Where to get help

The GP is the route for finding the cause; ask for the learning disability annual health check if the person qualifies. Mencap campaigns on exactly this failure and has resources for families. PMLD Link covers pain in people with profound and multiple learning disabilities. Alzheimer's Society explains pain in dementia. Together for Short Lives covers children with life-limiting conditions.