Chronic pain in people with an intellectual disability: under-recognised and under-treated?

A team in Ireland mailed a short pain survey to 317 family carers and paid support staff. They asked one question: does the adult with intellectual disability you support have pain most days for more than three months?

Carers also noted pain sites, medicines, and whether any pain specialist had ever been involved.

Thirteen out of every the adults with ID had chronic pain. Most pain was mild and lived in joints or the back.

Only two people out of the whole group had ever seen a pain clinic. General doctors usually handled the problem alone.

McCarron et al. (2014) used the same Irish carer-survey method and found even higher hidden illness: one in three older adults with ID has untreated epilepsy. Together the papers show carers can spot missed health problems when someone asks the right questions.

Hithersay et al. (2014) later searched for carer-led health programs and found zero that actually work. So we can count the pain, but we still have no proven carer training to treat it.

van der Miesen et al. (2024) report that most UK health studies still lock out adults with ID. This matches Smith et al. (2010): pain services are almost never opened for them either.

You already screen for behavior and skill progress. Add one pain question to your intake form: “Any body pain most days for three months?” If the answer is yes, refer to a pain clinic just as you would for any other adult. Do not wait for the person to ask; they may not have the words.