Annual health check

Also called Learning disability health check, LD health check

Everybody aged 14 or over on the learning disability register is entitled to one every year. Around a third never get one, and people die of things it would have found.

What it is

A long GP appointment, once a year, for anybody aged 14 or over with a learning disability, designed to find the things that would otherwise be missed.

It exists because of a mortality gap that is not an accident. People with a learning disability in England die on average around twenty years earlier than the general population, and the LeDeR reviews find the same causes again and again: constipation, epilepsy, dysphagia and aspiration pneumonia, sepsis, and cancers found too late. Most of those are things a proper annual check looks for by name.

Diagnostic overshadowing is the mechanism behind most of it: a physical symptom gets attributed to the learning disability or to behaviour, and never investigated. Someone in pain who cannot say so is described as agitated, and the pain is treated as a behaviour problem.

The check should produce a written health action plan. A check that produces no plan has largely been a box-ticking exercise.

Being on the GP's learning disability register is what triggers the invitation. Many people who should be on it are not, and asking to be added is often the single most useful thing anybody does.

Signs you might notice

Signs the person is missing out: no invitation in the last year, no health action plan, no record of a bowel or seizure review, no weight recorded, or a check done in ten minutes.

Signs of the conditions it should be catching: constipation that is treated as normal, weight loss or gain nobody has plotted, coughing at mealtimes, new distress or self-injury, refusing food, or a seizure pattern nobody has reviewed.

Missed screening: cervical screening, breast and bowel screening are all taken up far less by people with a learning disability, usually because nobody adapted the appointment rather than because anybody declined.

How it can affect day-to-day life

The check works or fails on preparation. Turning up cold to a fifteen-minute slot with a GP who has never met the person produces nothing.

Reasonable adjustments are a legal duty under the Equality Act, not a favour: a longer appointment, the first or last slot, a quiet waiting area, a familiar clinician, a pre-visit, easy-read information, and the person's own communication aid.

Constipation deserves naming separately because it kills people and is repeatedly recorded as normal for this person. It is not normal for anybody.

Medication review matters as much as anything else, particularly psychotropic medicines prescribed years ago for distress and never stopped. See pathological demand avoidance and the STOMP programme.

The check belongs to the person, not the service. A supporter's job is to make it possible, not to answer for them.

Supporting someone well

Check the person is on the learning disability register. Ask the practice directly, and ask to be added if they are not.

Book a double appointment and ask for the adjustments by name.

Go prepared: a list of what has changed, weight, bowels, seizures, sleep, mood, pain, and any behaviour that is new. Behaviour that is new is usually a symptom.

Ask specifically about constipation, swallowing, epilepsy review, eyesight, hearing, teeth, feet and medication.

Ask for the health action plan in writing, and take it to every other appointment for the next year.

Ask about the screening the person is due for, and what adjustment would make it possible.

Ask for a hospital passport to be completed, so an emergency admission does not start from nothing.

If a physical symptom is being explained by the learning disability, say the words diagnostic overshadowing and ask for it to be investigated on its own terms.

Where to get help

The GP practice, which holds the register and issues the invitations.

The community learning disability team for support with adjustments, communication and complex needs.

Mencap have easy-read guides to the health check and a helpline.

The local advocacy service, where the person has nobody to speak with them.