Raising concerns with staff

If you think a relative has delirium and staff have not noticed it, say so. Delirium is often missed. You may be the only person on the ward who knows how your relative normally thinks and behaves, and that information can help staff recognise it.

This page is about how to speak up, not about making a complaint. It is general information, not advice about your particular relative. Only the clinicians who can examine them can give that.

Why it so often falls to families

Delirium is badly under-recognised. In many hospitals only a fifth to a third of cases are picked up. Staff may notice that someone is confused, write “acute confusion” in the notes, and even find and treat a cause, yet never say the word delirium, to each other or to you. So families watch the delirium happen, the person becoming sleepy, frightened, agitated or muddled, and never hear it named.

You also hold the one thing the team most needs and cannot get from a chart: what this person’s normal thinking looks like. The ward met your mother on Tuesday. You have known her for decades. A doctor cannot tell from a single visit whether this is how she always is. You can, at a glance. That knowledge only helps her if you say it out loud.

What makes staff act

A busy nurse or doctor is most likely to stop and take notice when a concern is short and specific. Three things, in order, do the work:

1. Describe the change from normal, with times and examples. These carry more weight than adjectives. “She is not herself” is a fair start; “On Sunday she was doing the crossword, and today she cannot follow a sentence” is evidence.
2. Use the word delirium. It is a medical term with actions attached to it, in a way that “confused” is not. You do not need any other medical language.
3. Ask a question that needs an answer. “Could a doctor assess him for delirium now?” is much harder to leave hanging than a general worry, and it tells staff exactly what you are asking for.

Put together, it can be as plain as this:

Hospitals use short bedside tests for delirium, such as the 4AT. If nothing seems to be happening, you can ask for one by name: “Could someone do a delirium test, like the 4AT?”

What if you think delirium is being missed?

Sometimes a sudden change is explained as “old age” or “the dementia”. Neither explains a change over hours or days. Dementia changes a person over months or years, and age on its own does not make anyone suddenly confused. Delirium also often occurs on top of dementia, which is when it is easiest to miss. Keep returning to how quickly the change happened:

Words for common situations

Here are the concerns families raise most often, each with words you can use or adapt. Say them in your own way. The exact wording matters far less than saying the thing at all.

They are unusually sleepy, hard to wake or barely responding

The most common form of delirium is the quiet kind, where a person becomes drowsy, flat and withdrawn. It is also the form staff miss most, because a sleepy patient causes no trouble on a busy ward. Being settled is not the same as being well.

If they are unusually sleepy but wake and respond, report it urgently. If they are hard to wake, barely responding or cannot be roused, use the call bell and tell a nurse immediately. Ask for an emergency clinical review if there is no prompt response. Outside hospital, call the local emergency number immediately (999 in the UK).

“He is much sleepier than usual and responding far less. This is a sudden change. I am worried he is seriously unwell and needs urgent assessment for delirium.”

The doctor saw them at a good moment

Delirium comes and goes through the day, and it is often worst in the evening and at night. A person can seem reasonably clear at the morning ward round and be lost by supper. This is where your notes earn their keep.

“I understand she seemed clear this morning. But at six o’clock she thought I was her sister and tried to pack her bag. It comes and goes, and the evenings are the worst. I have written down what happened and when. Could someone assess her later in the day, when it is usually bad?”

A new medicine, then confusion

Changes in medication are among the most common triggers of delirium. If the confusion began soon after a new drug was started or a dose was changed, that timing is worth reporting, even if you have no idea whether it is the cause.

“The confusion started the day after the new tablet. Could that be connected? Could someone review her medicines?”

Falls, or not eating and drinking

Delirium brings practical dangers with it: falls, not eating, not drinking, trouble swallowing. Staff can do something about each, but often only once it is pointed out. If you see a risk, name it and ask what will be done.

“She has fallen twice at night this week. Can we talk about what would keep her safe tonight?”

“He has eaten almost nothing for three days, and there is never a drink within his reach. I am worried he is getting dehydrated. Could the team look at this today?”

The delirium is not getting better

Delirium often improves within days once the causes have been treated, but not always. Sometimes there is more than one trigger and only one has been found; sometimes the treatment needs longer to work. It is reasonable to ask why things are not improving and what happens next.

“It has been three days of antibiotics and he is no better. What else could be causing this, and what is the plan from here?”

Weeks later, still not themselves

After the delirium has passed, recovery can be slow, and families are usually the first to notice that concentration, thinking or memory have not fully returned. Most people improve over weeks to months; some do not get all the way back. Raise it rather than sitting with it.

“The delirium was six weeks ago and she is still not back to herself. Is this expected? Is there anything that would help her recovery, and who should we tell if she does not keep improving?”

If you are not being heard

Not every member of staff will respond well. Knowledge of delirium is patchy and wards are pressured, and families are still sometimes waved away with “he is just a bit muddled”. If that happens, there is a calm order to work through.

• Say it again. The same words, to the same person, sometimes land on the second attempt.
• Move one step up. Ask to speak to the nurse in charge of the shift, or ask when the doctor looking after your relative will next be on the ward. In a care home, speak to the senior carer or manager and ask them to arrange medical assessment now rather than waiting for the next routine visit. If the person is hard to wake, barely responding or deteriorating rapidly, call the local emergency number immediately (999 in the UK).
• Ask for your concern to be recorded. “Please could you write in the notes that I have raised a concern about possible delirium.” A concern in the notes is not lost when the shift changes.

If they are unusually sleepy but wake and respond, report it urgently. If they are hard to wake, barely responding or cannot be roused, get emergency help now. In hospital, use the call bell and tell a nurse immediately; ask for an emergency clinical review if there is no prompt response. Outside hospital, call the local emergency number immediately (999 in the UK). Some health systems offer a way for families to request an urgent, independent review when deterioration is not being taken seriously; in parts of the UK this is called Martha’s Rule or Call 4 Concern. Ask whether your hospital has something similar and look for posters on the ward. See Get help now for the other emergency signs.

None of this is a formal complaint. Complaints procedures are for looking back at care that has already gone wrong; this is the opposite, an attempt to get something noticed while it can still be treated. If nothing changes and you are still worried, raise it again the next day, with someone more senior. Persistence is not rudeness.

What families can add

Families can provide something no test or chart can: a clear account of what the person is like when well, what has changed and when. Staff who understand delirium value this information because it helps them assess the person.