Diagnostic Overshadowing in Learning Disability: A Care Staff Guide

A resident with a learning disability stops eating at lunch, becomes withdrawn and starts shouting in the evenings. Someone says, "That's just how he is." Days later he is admitted to hospital with an infection or a fracture that nobody had looked for. This is diagnostic overshadowing, and it is one of the most important patterns for care staff to recognise.

This guide explains what diagnostic overshadowing is, why it happens, and what you can do as a care professional to stop it. It draws on the NHS England clinical guide for front-line staff supporting patients with a learning disability and autistic people, and on the Learning from Lives and Deaths (LeDeR) programme's action from learning report for 2022/23.

What is diagnostic overshadowing?

Diagnostic overshadowing is when the symptoms of physical or mental ill health are wrongly put down to a person's learning disability or autism. The effect is that a diagnosis or treatment is delayed or missed. The NHS England guide makes the point that people with a learning disability get the same illnesses as everyone else; they may simply show or communicate their symptoms differently.

It rarely comes from bad intent. It usually comes from familiarity, time pressure and assumptions: "he always rocks when he is anxious", "she never says when she is in pain", "that behaviour is part of his condition". Each assumption can be partly true and still hide something new.

Why it matters

The LeDeR programme reviews the deaths of people with a learning disability in England. The NHS England guide cites the LeDeR 2021 report, which found that 49% of deaths of people with a learning disability were from avoidable causes, compared with 22% in the general population. The LeDeR action from learning report for 2022/23 names diagnostic overshadowing as one of four areas for improvement, alongside communication, Mental Capacity Act and best-interest decisions, and record keeping. That finding came from an analysis by Leicestershire Partnership NHS Trust of 28 reviews of people whose death certificates recorded COVID-19.

The same report notes that some people with a learning disability or autistic people cannot easily say they feel unwell, and their health can worsen quickly. In social care settings, failing to recognise physical decline, and not knowing when to seek medical help, can lead to delayed escalation of care.

How illness can look in someone who cannot easily tell you

The NHS England guide gives examples of how pain and distress can show up. A person may report stomach pain when none is present, or describe their pain as milder than you would expect. Another may not say they are in pain at all when they are. Pain may come out as behaviour: challenging behaviour, laughing or crying, self-harm, or withdrawing and becoming quiet.

The practical lesson is that a change is information. Treat it as a question to be answered, not as a label to be applied.

Know what is normal for the person

The single best defence is knowing the person's baseline. The NHS England guide advises working out what is "normal" for the individual, because a change from their usual behaviour can be the first sign of illness. It also warns that distress shown in hospital should not automatically be taken as a sign of mental illness.

Questions worth asking when something changes:

• What is different from how this person usually is: eating, drinking, sleep, mobility, mood, communication, toileting?
• When did the change start, and has anything else changed, such as medication, routine, staff or environment?
• Could this be pain, infection, constipation, a side effect, or something else physical before it is treated as behaviour?
• Who knows this person best, and have we asked them?

Practical steps for care staff

Use tools that help you see distress

The NHS England guide points to pain pictures such as the Wong and Baker FACES scale to help establish whether someone is in pain and where. It also lists the NCAPC checklist, for chronic pain in non-communicating adults, and the DisDAT tool, which helps staff identify signs of distress. The LeDeR report highlights an adapted RESTORE2 mini training tool for care homes, which helps carers spot "soft signs" of deterioration, and the decision support tool for physical health (DST-PH), which helps staff identify people at risk of premature death. Our guide to RESTORE2 and NEWS2 for recognising a deteriorating resident covers how soft signs are used in practice.

Make reasonable adjustments

The NHS England guide states that reasonable adjustments are a legal requirement under the Equality Act 2010. Its examples include offering a clinician of a particular gender, using a thumb-prick instead of a needle for blood samples, and providing a quiet room. The LeDeR report adds easy read information, longer appointments and home visits for tests. When you support someone to a health appointment, pass these needs on in advance rather than hoping they will be noticed on the day.

Communicate clearly

Use simple, clear language and avoid jargon. Check whether the person has a healthcare or communication passport that sets out how they prefer to communicate, and bring it with them. LeDeR also lists hospital passports, annual health checks and health action plans as tools that carry knowledge about the person from one setting to another.

Listen to families and usual carers

The NHS England guide stresses that families and carers know the person's baseline health, conditions, medicines and typical behaviour. Some may have short videos showing how the person usually is. If the person comes with someone who does not know them well, speak to their usual carer as soon as you can.

Record, report and escalate

Good practice is to write down what you have seen in plain, factual terms, when it started, and what you did, then tell the senior on shift or the registered manager the same day. Ask for a medical review where a change is unexplained or does not settle, and call 999 in an emergency. Accurate records matter: LeDeR names record keeping as one of its four learning areas.

Capacity, consent and best interests

The LeDeR report lists the Mental Capacity Act and best-interest decisions as a learning area of its own, next to diagnostic overshadowing, and the two often arise together. A decision about care or treatment should not be made on the assumption that a person with a learning disability cannot take part. Capacity is assessed for each decision, and if the person lacks capacity for it, a best-interests process applies. Our guide to best-interests decision-making under the Mental Capacity Act explains how this works for care staff.

Training and CPD

Recognising diagnostic overshadowing is a skill that depends on knowing the person, using the right tools and speaking up. If you are building your team's knowledge, start with the Oliver McGowan mandatory training on learning disability and autism, and keep a record of what you learn for your own development. You can browse professional development options on our CPD pages.

Key points to remember

• Diagnostic overshadowing means wrongly attributing symptoms to a learning disability or autism, which can delay diagnosis and treatment.
• Pain and illness may show as changes in behaviour, mood or withdrawal rather than words.
• Knowing the person's baseline is the strongest protection.
• Reasonable adjustments are a legal requirement under the Equality Act 2010.
• Write down changes, ask families and usual carers, and escalate early.

Frequently asked questions

Is diagnostic overshadowing only a problem in hospitals?

No. It can happen anywhere, including care homes, supported living, day services and GP surgeries. The LeDeR report links delayed escalation of care in social care settings to not recognising physical decline.

Does it only affect people with a learning disability?

The NHS England guide covers people with a learning disability and autistic people. The same pattern can affect other people, but those are the groups these sources address.

What should I do if I think a symptom is being put down to someone's condition?

Say so, factually. Describe the change from their normal, say what you have noticed and when, and ask for the possibility of a physical or mental health cause to be looked at. Follow your organisation's escalation procedure.

This guide is for general information and is not a substitute for clinical advice or your organisation's policies.