The Health Services Safety Investigations Body (HSSIB) recently asked a simple question: "Do you see me?",

Mark Havenhand and Nicholas Saddler, discuss this question and the importance of being heard and treated as an individual and not assessed based on assumptions.

Being seen as an individual

Published during Learning Disability Week, the HSSIB commentary looked at a fundamental issue in patient safety, that safe healthcare is not achieved simply by a patient being present, recorded in a system or given routine treatment. Healthcare professionals must recognise how a person communicates, what support they require, what is ‘normal’ for them and when something is wrong. This is not just good practice this is essential for patient safety.

When a person is not seen as an individual, assumptions can begin to fill the gaps. And when assumptions replace curiosity, opportunities to prevent harm can be missed.

When labels replace thinking

Healthcare professionals make difficult decisions every day, often under significant pressure and with incomplete information. It is also undeniable that most medical professionals are motivated to assist and support patients and do so. Nobody expects a GP, for instance, to know every answer at the first appointment, but an early impression should never become a substitute for ongoing thought.

A patient may be described as anxious, a frequent attender, difficult, non-engaging or overly concerned. Their symptoms may be attributed and linked to their age, race, gender, disability, sexuality, background or an earlier diagnosis.

More often than not these assumptions are not done consciously. They can emerge quietly from time pressure, fragmented records, communication difficulties or a patient not presenting in the way a medical professional expects. The impact can nevertheless be significant. For example, a patient presenting repeatedly with worsening headaches may continue to be reassured without stopping to question and think why they keep returning.

A patient with a long-term condition may develop an entirely new problem, but find new symptoms viewed through the lens of an existing diagnosis. A family member may raise concerns that "something isn't right", only to feel that those concerns have been disregarded because they do not fit the original clinical picture. None of these situations necessarily amount to medical negligence, but professional judgement matters and investigations must be proportionate.

The concern is what happens when the individual is replaced by a generalisation. Once that happens, new information can begin to be interpreted through an existing assumption rather than assessed with fresh clinical curiosity.

Not everyone is heard the same way

There is a growing recognition that healthcare experiences and outcomes are not shared equally. NHS England's patient safety framework recognises that inequalities can affect the safety of care itself, including through workforce and system bias. People must be able to access safe healthcare, communicate effectively within it and be taken seriously once they do.

Women's experiences provide one clear example. In the Government's Women's Health Strategy survey, 84% of respondents said there had been times when they, or a woman they had in mind, had not been listened to by healthcare professionals. Participants described concerns being minimised, symptoms being dismissed and feeling judged or not believed. We found this was also reflected in our recent medical gaslighting survey.

The same principle extends more widely. NHS England has recognised strong and consistent evidence that LGBTQ+ people experience poorer access, experiences and outcomes within healthcare.

Research has also highlighted the impact that disability, language barriers, deprivation, ethnicity and age can have on a person's healthcare experience. It has shown that these can sometimes influence whether symptoms are investigated, whether deterioration is recognised, whether referrals are made and whether a patient feels confident enough to seek further help when their condition worsens.

For some patients, attending an appointment already requires overcoming significant barriers. If concerns are dismissed, minimised or attributed to assumptions, they may hesitate before seeking help again. Sometimes that delay can matter.

If you begin to notice a pattern of feeling unheard when you attend medical appointments there are some practical steps you can take to make sure you are clearly explaining your symptoms. Take a look at our downloadable checklist to help ensure you are advocating for yourself.

Missed opportunity is often not one moment

When people think about medical negligence, they often imagine a single event where something obviously went wrong. In reality, many delayed diagnosis cases look very different. Sometimes there is no single specific error, instead, there is a sequence of missed opportunities, such as a symptom being noted but not being referred or fully investigated or a patient returning, but the original explanation is maintained. Viewed in isolation, each decision may appear understandable, however viewed holistically, a different picture can emerge.

In some delayed diagnosis claims, the central issue is not the absence of symptoms but the failure to reconsider an earlier assumption when those symptoms persist, worsen or evolve. Patients may not know what the diagnosis is. They are, however, often experts in what is normal for them. They know when their body feels different and when symptoms are becoming more severe. Families and carers can provide equally important information, as they may recognise behavioural changes, deterioration or communication difficulties that are not immediately apparent during a medical appointment. Listening to that information does not mean abandoning clinical judgement. It means ensuring that all available information forms part of the decision-making process.

Feeling heard at medical appointment

Not every poor outcome means negligent care has occurred. Some illnesses are inherently difficult to diagnose, and some symptoms are vague or non-specific. However, every patient is entitled to expect that they will be treated as an individual rather than as a label, stereotype or assumption. They are entitled to expect that concerns will be considered with an open mind; that repeat attendances will prompt thought rather than frustration; that changing symptoms will trigger reassessment rather than reliance on an earlier conclusion; and that a clinical explanation will be revisited when the facts no longer fit.

When a client approaches us with concerns over their treatment, we frequently hear one of (or a variation of) the following:

• "I kept going back, but nobody seemed to hear what I was saying."

• "They said it was anxiety, but I knew something else was wrong."

• "My family kept raising concerns, but nobody listened."

• "Looking back, all the signs were there."

Often, what those individuals are describing is a feeling that they were never truly seen as an individual. Crucially, they were never heard or listened to. Without taking on board a patient’s individual set of circumstances and their signs and symptoms, how can a doctor assess all the facts in order to diagnose and treat? Put simply, they can’t. It’s of paramount importance to raise awareness of what is a simple concept: to listen.