Gut Instinct in Healthcare: “I just feel something isn’t right”

“I really feel something is just not right”.

“My gut instinct is telling me something is seriously wrong”

I have spoken about reassurance and concern before, but I want to reiterate just how important this topic is.

Reassuring patients at the first point of care, could potentially not just save lives, it could also save money, time and resources. 

The purpose of this very personal post is that I really want to demonstrate that feelings and concerns a patient or carer may have, when communicated to health professionals and subsequently acted on accordingly, could really impact on a patients short and long term outcomes.

My Personal Story as a Case Study

In 2006 my little baby girl was born. After a very difficult labour, she didn’t cry when she was born; she was quite blue and unresponsive. (A moment which will forever haunt me.) Thankfully though, after a few moments, she came to and the relief was insurmountable.

Even so, I still felt something was just not right.

I had felt this anxiety throughout my pregnancy, but I did not feel comfortable sharing it with anyone. We had no major medical issues in our family prior to her birth. Why was I feeling this way?  In the days that followed in the hospital she found it difficult to feed. She was sleeping constantly. The nurses took her out to their work station to attempt to feed her. Stripped her down to make her more alert. Told me she might have to go to the special care unit. But then changed their minds the next day, said she was healthy and we could go home.

I went home feeling really anxious.

This feeling was so intense that I even borrowed a family members apnoea monitor as I was truly scared she wouldn’t survive. When she slept, the monitor kept alarming. The public health nurses kept telling me not to put it on her. But I just couldn’t do it. I really felt something bad was going to happen. She had lost her initial weight but wasn’t putting any more weight on. It took her two hours to feed. She was sleeping almost nine hours at a go. I wasn’t a health professional but from my experiences from my other children, I knew this wasn’t normal.

Upon receiving her heel prick test she momentarily stopped breathing and went blue around her lips. The nurse told me this could happen when babies got a fright. I was told that I was just very anxious; that I probably had post natal depression. I was even told my house was “too tidy” for a mom with three children.

But I ignored this. Going on nothing but my gut feelings, over the next week, I brought her to A&E numerous times. We were always sent home. Again, I was told it was “me” with the health problem, not her. None of my family members felt there was anything wrong with her; thinking it too, was just me.

But then, when she was just twelve days old she went limp in my moms arms. My mom got an instant fright and urged me to go to the hospital with her again.

I did, but this time I refused to go home. I picked up the courage to mention the dreaded words I had learned in college when studying legal issues:

“You have a duty of care”

It took a lot of courage for me to say this, but it worked – we were kept in. The next day a paediatrician came to see her. He listened to her chest and eventually told me she had a little heart murmur. Told me they would bring her back in six weeks to be further investigated and that lots of babies had them.

Leaving the hospital though, I still didn’t feel okay. I was not going to wait six weeks. I rang my GP, who was just back from his leave, and told him my concerns. He told me to come up straight away. He took one look at me; listened to her for a few moments, and immediately called another hospital. We were sent straight up. It was there we were told she had three holes in her heart and fluid on her lungs.

She would need to go to Crumlin immediately.

My little girl, eventually at five weeks old, after weeks in hospital; weeks of tube feeding and still weighing what she was at birth; underwent lifesaving heart surgery, and for a year or so after was put on multiple heart medications and high calorie formula milks to help her gain weight.

The impact this whole process had on me personally took its toll and one year later, I was diagnosed with Post Traumatic Stress Disorder [PTSD]. Every little worry I would get would frighten me – was it just that – a worry – or was it my gut instinct? I stopped trusting all health professionals, except my GP – the one person who really listened, and reacted on my concerns immediately.

I never made a complaint to the hospital or nurses about what had happened. I was too scared they wouldn’t care for her properly if I did. I didn’t want to cause tensions. 

I went to counselling for two years, and was getting much better, but then sadly, this whole thing was to be repeated again when my middle daughter aged 9 at the time, started waking up stiff every morning and was in constant pain. In this case however, it took three long years before this beautiful daughter of mine would eventually be diagnosed with Juvenile Arthritis, needing intense therapies and medications (including weekly methotrexate injections – a chemotherapy drug) to help get her into the remission she is in today.

Over the three years prior to her diagnosis my daughter underwent countless scans, appointments and tests. All costing the system money and resources. Had she seen the right specialist right at the beginning I feel this could all have been prevented.

Over the years, both I – and she – were again told it “was in our heads”.

Over the years she told me that she felt health professionals thought she was a liar. It had a dreadful impact on her mental health. As it did I.

Too many times I was made feel like a neurotic mom. I wished so often that they would prove me wrong – that my children were healthy.

But I knew this would never happen because in my gut I knew something was seriously wrong. 

Sadly, nothing seems to have changed – we are now going through this again with my eldest daughter for another range of symptoms. Again, we are now four years waiting for a diagnosis. Again we are told it is anxiety. Some days I have more fight in me than others. Other days I just can’t face the “talk” I am given by health professionals about stress related symptoms.

So while our personal situations often seem to end up with a serious diagnosis, I also want to demonstrate another situation where the outcome is not what the patient feels it may be:

Case Study:

A patient is having continual chest pains and a racing heart beat.

They go to their health provider. They are told it is anxiety, yet they don’t feel this is the problem. They are convinced it is something more serious. Their health provider however, using their best judgement and knowing the patient has suffered from anxiety in the past, tells them to try counselling, therapies or medications. No tests, scans or referrals are made to investigate the chest pains. The patient is not asked if they feel reassured by this.

The patient goes home but they just don’t feel right. 

They go to “Dr Google” to look it up. Decide from this that their symptoms look serious and so won’t try the recommendations advised by their health provider. Decide that they will get a second opinion from a specialised health professional, and a third if that doesn’t work out. The symptoms get stronger as the time goes by and by this stage the patient is feeling miserable – they feel they may even die.

After six months, they eventually see a cardiologist who listens to them and proceeds to provide various diagnostics to help reassure the patient.

The outcome in this case is that the patient does not have any cardiac related issues. The cardiologist and their team take some time to explain to the patient in detail how the body can react to stress and how it can cause these symptoms. They are advised to try different therapies by the cardiologist and that they can come back to them at any time if they feel worse. Told that they were right to get it investigated and asked if they now felt reassured.

The patient at this stage may feel embarrassed that they made such a fuss. Additionally, their symptoms have escalated due to the time to get diagnosed, and now they feel a lot physically and mentally worse than they did at the onset of the condition. The patient may feel relieved that they did not have something “serious” wrong with them, but they know they do still have something wrong.

And mental health issues can be more serious than many cardiac issues.

What should have happened in this situation? If the patient was really listened to at the very first point of care could this have been prevented? 

I feel, if an opportunity to provide diagnostics at this very first point was given, then the patient could have had a chance to alleviate these symptoms much faster and get accurate treatments. This could mean they would not feel the need to go to websites (which could have inaccurate information); they wouldn’t have to see so many other health professionals for second (or third) opinions; they would have been able to follow through on the initial recommendations by their health provider thus not escalating symptoms. I do feel the patient would have followed through on the initial recommendations if they felt truly reassured that nothing more serious was going on.

Patients know their own bodies better than anyone – parents and carers know their loved ones in the same way. Their symptoms are very, very real to them and I feel everything should be done to ensure that they feel they are safe.

In this case, in particular, if the patient had previous episodes of anxiety, then this should have been a warning sign to act earlier rather than later, as the anxiety could escalate, as seen above.

What if, in this case, the symptoms were actually cardiac related – what would the output be then? At worse, the patient would not survive; at minimum they could end up spending a lot more time in acute hospitals, primary care services or taking more medications than required. This patient was not wrong, they had real symptoms to them. And these needed to be taken seriously.

A Worried Nation

So a patient finds a lump on their body – is it cancer? A pain in their chest – is it a heart attack? Many parents will identify with that “intense heart stopping fear” when they see a rash on their child – often thinking of the worst scenario first – is it meningitis? When temperatures spike, fearing they could get a seizure. When airways clog up, the fear of them not being able to breathe.

The list goes on and on.

Many patients are called hypochondriacs – which is my opinion, is not a fair diagnosis because if someone has constant worry, about their health or otherwise – I feel that they have a mental health condition, most often which is called anxiety. It is this underlying anxiety that needs to be treated, holistically.

From talking to so many patients and families over the last years I have heard over and over again situations where they went to their health providers for reassurance, but they were brushed off; often told they were over anxious or the symptoms were caused by stress.

Parents, carers or patients should not be labelled as neurotic – when they react to help themselves, or their loved ones – they should be praised. They are not neglecting themselves or their families, they are doing what they feel they need to do. Is this not a good thing? 

If we didn’t react on time – what would happen then? We know of so many stories, like my own, where patients were left waiting too long, often causing permanent disabilities, or worse, not making it at all. We also know of many good stories when a patient was listened to and were provided with immediate diagnostics, leading to accurate interventions, on time – like my GP did.

In these situations not only did these patients survive, or were they left with chronic disabilities, but they also felt reassured.

When the public are aware of the most serious conditions this can be life saving in many cases.  I take my hat off to anyone who creates proactive awareness, but I also ask that a balanced approach is taken so as not to constantly fear monger patients or carers. There are so many advertisements telling the world that “1 in 3 will die of such and such…”

Is it any wonder we are seeing a spike in a worried “hypochondriac” nation? 

But, regardless of our anxiety levels, we still really do need reassurance that we are going to be okay, and I feel, it is at the first point of care of which this should be addressed. Do the blood test; do the X-ray; do the scan; do the diagnostics; do the referral.

While it may look like it will initially cost the system a lot to do this, I can almost guarantee you that if the patient is not reassured, it will cost the system a lot, lot more in the long term.

Don’t just presume a patient feels okay – simply ask the question, do you really feel reassured? 


Did you ever seek health care assistance because you felt “something just wasn’t right”? Or maybe you were a health professional and your gut instinct made you react?

If so, click on the survey link below and tell us your story here:
 
 

Reassurance – Often written, rarely verbalised.

As I came in from another long day at work, my three girls (and three dogs, I might add!) all came running at me – just before I got a chance to glance at the post that had arrived that day.

After seeing their happy faces and hugging them tightly, I felt so reassured that they were so happy, and that yet another day had gone by where I had gone to work and that they were still okay by the time I got home (don’t get me wrong my babysitter is amazing – it’s just a thing I think all moms have a little anxiety about from time to time when they leave their kiddies all day with someone else!)

Anyway, my kids (and dogs!) quickly forgot about me as they knew it was near to bedtime and so they scarpered off to get in their last few minutes of play and television watching. It was then that I took the opportunity to give my attention to the mail, as I had noticed that one envelope had a stamp from my children’s hospital on the front, and I was waiting every day for six long weeks for it to arrive.

However, as soon as I started reading it, my previous feelings of reassurance were soon replaced with feelings of dismay.

The letter started with the usual opening statement outlining how my daughter presented on the day and then went on to discuss her medical history. There were, of course, references to the concerns I had as a parent which were followed by this sentence…

“I have reassured mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.”

So why did I get upset about this? Wasn’t it great to hear she was doing well? 

Well first of all, of course I knew how my daughter was the day of the appointment – I was after all, in the room with her. I didn’t take her out of school nor me out of work to seek reassurance about this. Nor did I go to seek reassurance that she would be followed up on (I had taken this as a given.) 

I had gone there with a specific agenda.

I wanted a proper plan to be put in place for her, for when she wasn’t doing “okay”. With three years of my daughter living with sporadic high blood pressures, a huge fear had settled on me that one day something terrible would happen to her – and all because we had no clue what to do or where to go when this happened to her.

Now please don’t classify me as a neurotic mum yet…please hear me out.

We had been told by specialists that there could be a possibility of my daughter having phaeochromocytoma or carcinoid syndrome, but that sometimes it is only when puberty starts that a true picture would show itself. My daughter also was diagnosed with the same hole in heart that her daddy has [PFO], of which he suffered a stroke from at age 42.

So, for three years our “emergency plan” was to go to A&E every time her blood pressure spiked, to get her urine catecholamines done. This quickly fizzled out because firstly, it wasn’t good for any of us (especially her) to be made more anxious by being in hospital; secondly her blood pressures were spiking all the time and it wasn’t feasible to keep travelling up and down, and lastly, I swore that if I ever heard the term “white coat hypertension” one more time, my own blood pressure was at risk of going through the roof!

So all I wanted out of this appointment was to be reassured that nothing bad was going to happen to her, that I wasn’t “crazy” and that we could have a proper short term and long term plan for her. But by the end of the appointment (and the letter) it was obvious to see that we weren’t going to get this at all.

It also occurred to me upon reading the letter that the other health care professionals that were cc’d into it, could make the possible presumption that I, her mother, was feeling reassured and not, which was the reality, still stressed. With “presumption” in itself a whole other conversation of which I regularly refer to in way of a proverb [in a language I couldn’t possibly share on this blog!] ” I started to think more and more about the safety issues of using this terminology.

In this case, however, I think it could be fair to say that the health care professional reading this letter could have been led into this presumption because it clearly stated how I had felt (even, if it were in someone else’s opinion).

So what does the term “reassurance” actually mean, and when or where should it be used?

Interestingly, reassurance is defined as an action of which removes someones doubts or fears, or it is even a statement that does the same.

An action? Really?

By now, I’m sure you can say that it was quite obvious that my doubts and fears were not acted upon. 

So my question is, should correspondence between health care professionals include the term “reassurance” unless the same has been specifically asked of the parent or patient? An excellent blog by Bronwyn Thompson, editor ofHealthSkills discusses the benefits of reassurance in patients and she refers to Linton, McCracken & Vlaeyen (2008) who discuss whether reassurance is actually, reassuring. 

Simply put, for someone to reassure someone else, shouldn’t they both be discussing the topic of which caused the fear or doubt in the first instance? And surely a reassuring statement (such as in the letter) can not be given unless it is in fact agreed upon, with the person who had the feelings of anxiety?

Maybe a simple solution to my daughters letter would be to replace the noun “reassured” by the word “told”, for example – 

“I told mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.” 

 

Why?

Because if a health care professional perceives a patient to be reassured then there is a possibility that that next appointment will be pushed to the bottom of the pile. The urgency of such a situation may not be deemed as so, because the parent “feels” okay at this time…and the child is doing well.

Now, I do want to make one thing clear.

This issue I have is only around the way in which health professionals may communicate. It does not reflect whatsoever their  ability, skills or professionalism. Believe me, if I don’t like or trust a physician – I move.

Simple as that.

We are very lucky to have the health care professionals we have, although on the same note, quite unlucky that we know them because of the health we do have!

This blog is just a reflection of how communication could be improved upon in relation to medical data. To be honest, if I had my way, I would love to see all parents cc’d into every letter that go between health care professionals as they are, after all, the child’s primary carer. But for now, even if we just change a word or two, it can really help bridge the communication gap that seems to be getting bigger and bigger.

And if that word were only “reassurance”, I feel I myself would be reassured.

Reassurance is a feeling.

I think a patient or parent should always be asked at the end of their appointment do they feel reassured about the initial concerns they had. But I don’t think it is necessary, appropriate or even safe to include such “feelings” in a medical document.

Unless of course it is around the feeling of “concern”.

And that, dear reader, is a whole other topic.