Tardive dyskinesia

Involuntary movements caused by long-term antipsychotic medication. Often permanent, and frequently not monitored for.

What it is

Tardive dyskinesia is a side effect, which makes it different from almost everything else in this library: it is caused by treatment.

Long-term use of antipsychotics, and some anti-sickness drugs such as metoclopramide, can cause involuntary repetitive movements. Around one in four people on long-term antipsychotics develop it to some degree.

It often persists after the drug is stopped, and sometimes permanently. Which is why monitoring for it, and reviewing whether the drug is still needed, is not optional.

This matters particularly for people with a learning disability, who are prescribed antipsychotics far more often than the evidence supports. That is what the STOMP programme exists to address.

Signs you might notice

Involuntary movements of the face and mouth: lip smacking, chewing, tongue protrusion, grimacing, rapid blinking.

Movements of the limbs and trunk: finger movements, foot tapping, rocking, writhing.

Movements that stop during sleep and worsen with stress.

Onset usually after months or years of treatment, and sometimes on reducing the dose.

How it can affect day-to-day life

The social effect is significant and rarely acknowledged. Visible involuntary facial movements attract stares and assumptions, and they compound the stigma somebody already carries from a mental illness or a learning disability diagnosis.

Eating, speaking and dental health can all be affected.

The cruel bind is that reducing the drug can worsen the movements temporarily, so people and clinicians avoid the conversation, and the drug continues.

Supporting someone well

Ask what every antipsychotic is for, and when it will next be reviewed. If the answer is that it was started years ago for behaviour, that is a STOMP conversation.

Ask for formal monitoring using a scale such as AIMS, at least annually. Casual observation misses early signs.

Report new movements promptly rather than accepting them as part of the picture.

Do not stop antipsychotics abruptly. Reduction needs to be planned and supervised.

Ask about treatments. Specific medicines for tardive dyskinesia exist and are not widely offered.

Fiducia Together keeps medication reviews and side-effect monitoring in the clinical record, so a drug started in 2019 for a reason nobody remembers gets a scheduled question rather than an indefinite repeat.

Where to get help

Raise it with the prescribing psychiatrist or GP, and ask for a medication review.

For anybody with a learning disability, raise STOMP by name at the annual health check.

Rethink Mental Illness have clear information on antipsychotic side effects and on the right to a review.