Comment

Before my rare condition was finally diagnosed, I struggled to be believed

Clinicians should keep an open mind and not go straight to the obvious diagnosis, says nurse Bethann Siviter

Clinicians should keep an open mind and not go straight to the obvious diagnosis, says nurse Bethann Siviter


Listening to what patients tell you is fundamental to person-centred care.  Picture: iStock

You may be familiar with one of the medical profession’s core tenets, based in mathematical theory. If not, are you ready to be enlightened? ‘Common things are common.’

Yep, that’s it. Tah-dah! Doctors are taught: ‘When you hear hoofbeats, think horses, not zebras.’ But, what happens when it is a zebra galloping into your clinical area? Too often, clinicians stick to their ‘common diagnosis’ without considering the bigger picture.

I have a rare cancer – about 50% of cancers are rare cancers – and people like me who cope with rare or uncommon disorders often call ourselves ‘zebras’. How can you as a nurse or member of the wider nursing team ensure zebras get the best possible care? I’ve learned a few things in my patient journey.

What I have learned about the care of people with rare conditions

The most important of these is listen to your patient: my neuroendocrine tumour is causing something called carcinoid syndrome (flushing, diarrhoea, bloating, palpitations, nausea, breathing problems and fatigue). One nurse said I couldn’t have it as my lab values were good, yet I do. Accept that pain and symptoms are what the patient says they are; our science is good, but it’s not perfect, and there are still things we don’t understand about the body.

Part one: Colon cancer from a patient's perspective

That leads me to the second thing I’ve learned: don’t argue with a patient who has a rare condition – they become experts out of necessity. When I was told I had a neuroendocrine tumour, I thought ‘What the… neuro what?’ I’d never heard of it. Now, I’ve read everything I can find. I've had to learn because I need to educate those caring for me, but they are not always in a learning mood. Healthcare staff can take offence when they are challenged, even kindly, about things they get wrong or don’t understand.

Are you in a learning mood? Neuroendocrine tumours used to be called ‘carcinoid’ because they aren’t typical in appearance or growth. The average time from symptom onset to diagnosis is seven years. In those years, symptoms are blamed on other problems such as irritable bowel, reflux, hypertension, food intolerances or the old standby, anxiety. Can you imagine struggling for years only to find that you’ve had cancer all along?

Neuroendocrine tumour diagnoses are often delayed

Most people diagnosed with neuroendocrine tumours are diagnosed when the lesion is stumbled across while some other problem is being investigated, usually late in the disease when it’s much harder to fight. It reminds me of Spike Milligan’s epitaph: ‘I told you I was sick.’

‘The best way to spot a zebra is to be open to the reality that the sound of hooves doesn’t always mean horses, and sometimes, our first assessments and judgements won’t be the right ones’

When caring for people, you must accept not everyone will have a ‘common condition’, and sometimes, problems that land a person in one area of care are caused by something else entirely. For example, because carcinoid syndrome causes a range of symptoms, a person might be seen in cardiology, gastroenterology, endocrinology, diabetes services, asthma clinic, dermatology and/or psychology.

Considering multiple symptoms as a whole

Each individual service will usually only see their system and its function, yet when all the symptoms are put together it shows that something is seriously wrong. If we are blinkered and only have one perspective on an individual’s health, we will miss the all-important ‘bigger picture’.

Part two: Being diagnosed with cancer was like being let in on a secret

The best way to spot a zebra is to always be open to the reality that the sound of hooves doesn’t always mean horses, and sometimes, our first assessments and judgements won’t be the right ones. Be strong enough to say ‘I think something else could be going on’ when the ‘common’ diagnoses and treatments don’t work. Think horses, but look for zebras.


Bethann Siviter is an independent nursing consultant
@Bethann_Siviter

This article is for subscribers only

Jobs