“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:
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?