Learning disability

Also called Intellectual disability, Learning difficulties

A lifelong difference in learning and understanding. And a group whose people die, on average, decades early for reasons that are mostly avoidable.

What it is

Around 1.5 million people in the UK have a learning disability. Start with the figure that ought to make everybody uncomfortable: on average, men with a learning disability die around 22 years earlier than the general population, and women around 26 years earlier. The LeDeR reviews attribute a large share of those deaths to causes that were treatable.

A learning disability means a reduced ability to understand new or complex information and to learn new skills, together with a reduced ability to cope independently, which started before adulthood.

It is not a mental illness, it is not dyslexia, and it does not go away. What varies enormously is what support somebody needs, and the assumption that it varies less than it does is where most bad practice starts.

Signs you might notice

Usually identified in childhood, so the useful things to watch for in adults are not signs of the disability but signs of unmet health need.

Behaviour change is the one that matters most. Distress, withdrawal, aggression or self-injury that is new is very often pain, constipation, reflux, toothache, an infection or a bereavement.

Weight loss. Recurrent chest infections, which suggests dysphagia.

Stopping doing something they used to enjoy.

How it can affect day-to-day life

Diagnostic overshadowing is the mechanism behind most of those early deaths. A symptom appears, it gets attributed to the learning disability, and nobody investigates. It happens repeatedly and it is documented repeatedly.

Communication is the second mechanism. Somebody who cannot describe chest pain, or who says yes to every question because that is what has always ended the conversation, will not be diagnosed by an ordinary consultation.

And then there is the ordinary business of a life: work, relationships, a home, choices. Around 5% of adults with a learning disability known to councils in England are in paid employment, and that figure reflects opportunity rather than capability.

Supporting someone well

Book the annual health check every year from age 14. It is the single most effective thing available, and roughly a quarter of eligible people still do not get one.

Make a hospital passport and take it everywhere. What matters to me, how I show pain, how I communicate, what frightens me.

Treat all new behaviour as communication and look for a physical cause first, every time.

Insist on reasonable adjustments under the Equality Act 2010: longer appointments, easy-read information, a quiet waiting area, a familiar person present.

Use the Mental Capacity Act properly. Capacity is decision-specific and presumed, and a person must be given all practicable support to make their own decision before anybody concludes they cannot. Read mental capacity.

Watch the STOMP agenda: people with a learning disability are prescribed antipsychotics far more often than the evidence supports, frequently for behaviour rather than psychosis. Ask what a drug is for and when it will be reviewed.

Three of our products are built around this. Fiducia Life gives the person their own portal: my day, all about me, my things, the Calm Room and The Library. Fiducia Talk is free AAC for anybody whose speech is unreliable. Fiducia Together holds the annual health checks, the medicines and the clinical record for a service, with the behaviour records beside them so a pattern is visible rather than filed.

Where to get help

Get on the GP's learning disability register. That is what triggers the annual health check.

Mencap run a free helpline on 0808 808 1111.

Ask the local authority for a Care Act assessment, and start transition planning from 14 rather than 17.