World Patient Safety Day: When Being Disbelieved Becomes a Patient Safety Issue
By Tina Mincher

Every year on September 17th, World Patient Safety Day reminds us of one of healthcare’s most fundamental principles: first, do no harm.

When we talk about patient safety, we rightly think about medication errors, surgical mistakes, infections, or failures in hospital care. But there is another kind of patient safety failure, one that can be much harder to see. What happens when a seriously ill patient is not believed? What happens when symptoms are minimized, diagnosis is delayed, or patients and families repeatedly ask for help, left to navigate a complex illness largely on their own?

As the mother of a child with Myalgic encephalomyelitis (ME/CFS), I have learned that being believed is not simply about compassion. It is about safety.

ME/CFS can affect people of any age, and it can change a person's life with devastating speed.

A child who once went to school, saw friends, enjoyed hobbies, and imagined their future can suddenly struggle with standing, showering, concentrating, walking across a room or simply sitting upright. An adult who was working, raising a family, studying or socializing can suddenly find themselves unable to continue with the life they once knew.

And the severity of ME/CFS can be incredibly difficult to see from the outside. A patient may look well for a few minutes in a consultation yet be profoundly unwell. They may have spent days conserving their limited energy just to attend that appointment and what happens afterwards may never be witnessed.

• The crash: When the smallest effort becomes too much, and the body simply shuts down. 
• The exhaustion: When their energy is so completely depleted that every part of them feels almost paralyzed, as though they simply cannot move. 
• The suffering: When every part of them hurts, aches and burns, and there is nowhere for the pain to escape. 
• The cognitive difficulties: When words disappear, thoughts become impossible to hold and speaking can feel beyond reach.
• The sensory intolerance: When light feels painful, sound becomes overwhelming, temperature is unbearable, smells are intolerable and even food can become impossible to face. 
• And then comes the aftermath: When days, weeks, sometimes much longer, paying a devastating price for activity most people would consider ordinary. And sometimes, there is no recovery at all. 

For parents, partners, and carers, there is another layer of suffering: watching someone you love become increasingly unwell while desperately trying to get them the help they need. Too many patients and families with ME/CFS face disbelief, dismissed symptoms, delayed diagnosis and inadequate support. Being disbelieved or left without a diagnosis can have devastating consequences, leading to delayed care, unmet needs and inappropriate treatment that may cause further harm.

That is why ME/CFS must be part of the patient safety conversation.

Every patient deserves to be heard, believed, diagnosed and treated with dignity. Patient safety means recognizing complex illnesses, taking symptoms seriously, and understanding that looking well does not mean being well. No patient should have to prove they are sick enough to deserve care.

On World Patient Safety Day, September 17th, let's remember every person living with Myalgic encephalomyelitis (ME/CFS).

• The child whose childhood has been taken away.
  The young person watching their future disappear.
• The adult who can no longer work, care for their family or live the life they once knew.
• The person confined to their home or bed.
• Those with the most severe ME/CFS, confined to darkened rooms, unable to tolerate light or sound and, in some cases, unable to eat or drink normally without nutritional support.
• And the parents, partners, and carers standing beside them, doing everything in their power to protect the person they love: fighting for recognition, diagnosis, appropriate care and every bit of help they can find, often when they are exhausted, frightened and running out of places to turn.

Believe Patients

Listen to patients.

Learn about ME/CFS.

Fund the research.

Build appropriate services.

And stop leaving patients and families to fight this alone.

Because when a patient tells you they are seriously ill, listening to them should never be considered an act of kindness.

It should be an essential part of keeping them safe.