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“Do you hear me?”

Nicola Miller

Written by: Nicola Miller, editor-in-chief, creative director, RARE Revolution Magazine, and co-founder and trustee, Action for XP formerly Teddington Trust

Hearing and listening are two entirely separate things. Hearing is the act of perceiving a sound by the ear. It is a passive act that requires no skill nor effort; it is essentially a bodily function. Listening, however, is to truly try to understand another person’s point of view. It is an active experience and one which requires more effort and skill than you may realise. 

Nicola and her son Eddison

Research suggests that we spend on average 70-80% of our waking day engaged in some form of communication.

  • writing (9%),
  • reading (16%),
  • speaking (30%),
  • and listening (45%).

Despite the vast majority of our daily communication being spent on listening, it is surprising to learn that most of us are rather inefficient at the art of listening. And it may surprise you further to learn that the reason for this is because our brains are so incredibly powerful—which of course sounds at counterintuitive.

In fact, our brains are so powerful that we think around four times faster than we speak. For example, did you know that the average person talks at about 100-125 words per minute, yet our brain thinks at about 400 words per minute? This means that when we listen, we only use a quarter of our mental capacity to hear, which leaves significant unused capacity often resulting in our minds wandering to other topics to try and fill that space.

Have you ever been listening to a work meeting and suddenly found yourself thinking about what you might cook for dinner?

“Mind wandering—we are all guilty of it—me included. But does it matter?”

Well, the short answer is yes. Millions of dollars are lost every day in organisation due to poor listening. This is because poor listening leads to assumptions, misunderstandings, errors and inefficient decision making, as well as weakened trust and loss of respect.

What does poor listening have to do with rare diseases?

We all know the GP/physician is the front line—the gatekeeper to healthcare and vital in any rare disease diagnosis. We also know that no diagnosis, treatment, care or support can be accessed without getting past this gatekeeper, making these vital, powerful and lifesaving roles. Yet, despite being formally removed in 2013, the majority of GP practices still work to 10-minute time slots, with the NHS reporting the average consultation in the UK lasts just 12-minutes.

Truth is, this is a challenge even with a routine common ailment but throw into the mix one or more of the 7,000 rare diseases and we can immediately see the problem.

My personal story with GPs’ as a parent to my child with a rare disease.

At three months old, my son started showing signs of his skin and eyes burning on exposure to daylight and light bulbs. We repeatedly visited our GP and latterly our local dermatologist, yet it took a full further year before we received a life-altering diagnosis. The diagnosis makes him one of around 120 patients in the UK with the DNA repair disorder xeroderma pigmentosum.

Why did it take a year to receive a diagnosis?

Simply because no one was listening. When I repeatedly reported he was burning despite wearing SPF 30, they told me It’s easy for a new mum to forget to apply it, do better.” When I reported he seemed to burn when indoors and that the whites of his eyes even burnt they scalded me for wasting their time.

“The final straw was when the dermatologist banged her hands on the table and shouted at me, intimating that if this didn’t stop matters would be escalated—which I fully understood to mean the involvement of social services.”

Eddison wears high SPF sun cream
Eddison in his visor

“I was terrified. I felt powerless to be heard and believed.”

In desperation, we got the money together for a private consultation. This money didn’t pay for a better-quality dermatologist or specialist testing. What it paid for was time, and to be listened to. In this appointment, the consultant sat motionless while I spoke in detail about our journey.

“Through the act of truly listening, the consultant was able to ascertain very key clues and patterns that allowed her to confidently say: “I hear you. I am listening. I believe you.””

Within less than six weeks my son was sitting in front of the clinical lead for the National XP Service having a biopsy that would confirm a diagnosis.

Unfortunately, this was not an isolated incident ongoing unheard.

Six years later we found ourselves in the same position after new symptoms presented which did not fit our son’s existing diagnosis. The global response to his new behavioural and physical symptoms was that he was an “anxious child”. I was told by a paediatrician that perhaps I had been reading too much on Google, and that I should try distracting him. An appointment that was littered with constant interjections and neither my husband nor I was able to complete a sentence without interruption.

With our son’s well-being deteriorating we were forced to take things into our own hands again.

Much like before, paying for a private consultation was a turning point. After 15-minutes of us explaining our son’s symptoms, and presenting his blood work results, the consultant concluded that he met the diagnostic criteria of paediatric autoimmune neuropsychiatric disorder (PANS). Three days later, now on appropriate treatment, our son started to return and his symptoms faded away.

Is today’s system so stretched that the only way a patient can expect to be listened to is to pay for the privilege?

Well, the good news is that it doesn’t have to be. With a will and some self-awareness, we can turn ourselves into skilled listeners. In the article, The Price of Poor Listening, two steps set out how to be present and truly listen and I encourage everyone to digest these steps simplified here:

The art of listening and hearing
The art of listening and hearing

For any consultants reading, I urge you… Next time you encounter a patient or parent, try approaching it as if you were in the final exam for your Diploma in Listening. I am certain you will find the results powerful in building better relationships, making better decisions, and just maybe this might allow you to be the gate keeper with the key to open up a pathway of care to someone with a rare disease.

Whilst drug repurposing, gene therapy and medical breakthroughs are very much a part of the future for progress in rare diseases, for me, the biggest breakthrough will be when I and others like me can say to the consultant, “Do you hear me?” and the answer comes back loud and clear—“Yes”.

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