I decided to complain to the children’s hospital after our last hospital admission.
Back story: our daughter Beatrice has Kabuki syndrome, a very complex medical condition, and in her 9 months of life, we got admitted in the hospital 11 times.
This time, ta-daa: we got Covid.
All of us.
We brought her to emergency at the children’s hospital, because her breathing rate was quite high and, seen her fragile heart condition, we were advised to bring her in.
They attempted to put a cannula in 8 times, the first 2 attempts were made by a doctor in ED; after seeing how badly bruised our baby got during her handling, the doctor told us that she might have sepsis or even meningitis, and left us saying “I’m very worried, mama; I’m very worried”.
Which didn’t really help us: we were both feverish, sick, concerned about seeing our girl so bruised, and really scared because of her high heart and breathing rates.
Her comments made us extra worried, not to mention that our daughter only got bruises when she handled her: she didn’t get bruised as much with the 3 different anaesthetists who did 6 more cannula attempts.
Yep, we were upset.
Our options, after the discharge, were: let go, because our daughter was finally recovering and, at the end of the day, the doctor was trying to be proactive in her diagnosis.
Or we could complain to the patient’s friend, a figure inside the hospital aimed to listen and address patients’ and carers’ concerns.
Or we could report the doctor to the health care complaint commission, a government body who deals with complaints about health providers.
We chose the second option, and I wrote an email to the patient’s friend.
I’m very grateful for this professional figure inside the children’s hospital, it’s there specifically to deal with these situations, so why not?
I wrote an email outlining 3 goals.
The first was to leave my feedback on the ED doctor: not only she badly bruised my kid (how dare she?), but she also jumped to conclusions, gave us a partial case scenario in a way that amplified our fears and our emotional state. She was wrong, by the way: our daughter didn’t have sepsis nor meningitis; but even if she was right, piling up on our stress the way she did, was counterproductive and wouldn’t have allowed us to make rational, informed decisions if time for tough decisions had come.
The second goal was to ask that it’s written on our baby’s file that attempts to cannulate will be allowed only with the use of ultrasounds and by an access team. By the way, this wasn’t my idea, it was actually suggested by a couple of people on TikTok and Facebook, so thank you so much for being there for us, guys! Beatrice’s tribe is the best!
The third goal was to leave my positive feedback on our CNC, which is a specialist nurse who coordinates all the medical journey inside the hospital for very complex kids.
She is superlative: her communication is impeccable, she’s empathetic, she listens, she gets stuff done. She’s making such a difference in our medical journey inside the hospital, and I really wanted to let the hospital know.
Sometimes we just give feedback when it’s negative, right?
So I want to communicate to the hospital what’s going not so well, but also what is great.
The response?
Well, the patient’s friend replied immediately, acknowledged my concerns and forwarded them to the emergency department.
Then I received a call from the person in charge in ED, let’s call her Stella, and we talked about it all.
I’ll try to summarise it: basically we can’t prove that all the bruises were caused by that doctor; she tried to cannulate in the hands, and one bruise was on the foot, so…not much to do about that.
Also, it was written in that night’s files that our baby was really sick, so in Stella’s opinion that doctor had good reasons to start talking about bad case scenarios.
Although, she confirmed that it could have been communicated to us in a different way and she would talk to that doctor to improve their communication skills.
In regards to the cannulation request, the hospital doesn’t have a system to flag on a child’s file the need to cannulate with ultrasounds and anaesthetist team only.
This is bad and it’s not the first time that I see how this children’s hospital and hospitals in general are way behind the times, in terms of technology.
I'm not sure if it’s just here in Australia, most probably not and I reckon that the financial cuts to the health care system are part of the problem.
I’m not going there today, it’s off topic, but it’s not ok.
Anyway, my take from the call is: they’re going to tell the doctor to express possible case scenarios in a more objective and constructive way, and to take in consideration the parents’ situation.
So, was it worth it? The time spent writing the email, staying on the phone with Stella, all to be told basically “we’ll let the doctor know”?
Yes, absolutely!
First of all, this is Australia: if they say that they’re going to talk to that doctor, they will (I love this country!).
And maybe this will give that doctor an opportunity to improve and have better communication with other families too.
Second of all, I needed to be heard. I needed to express my frustration, and here comes my advice to other special needs parents and other parents in general.
Don’t let go. Ever. I had someone telling me: “it depends on what you’re aiming to achieve”.
This is not entirely correct, because your feelings are intrinsically valid and important.
When you deal with a special needs journey, 50% of your life is made of all the emotions that you have to deal with. What we go through is traumatizing, tiring, maybe even depressing, and the best way to build our resilience is own our feelings and be heard.
Don’t ask yourself if you’ll get the outcome you expect; ask yourself: will I regret more speaking up and not get all that I expected, or not speak at all and deal with my emotions alone, in silence, knowing that my silence won’t improve the world around me and might even become an extra burden on my mental health?
If you are not happy, go ahead and complain to the hospital, although my tips are:
1. Be polite, be clear, be concise.
Be polite, because even if you are incredibly outraged you should always be respectful and act within social conventions. It won’t help you if you shout, scream at doctors and call them names.
Be clear because whoever you have in front of you doesn’t see the picture you see. Explain what happened, what you saw, how it made you feel, what you would like to happen as a result of your complaint.
Be concise because the person you talk or write to is most likely very busy. Don’t add information unless it’s pertinent to your complaint. You want them to stay focused on your case: if you digress too much, you’ll lose their attention.
2. Be open to give nice feedback too.
Show your objectivity in recognising what went well and acknowledge the effort made to meet your needs. At the end of the day, you’re dealing with human beings who sometimes make genuine mistakes, and this doesn’t take away from their competence.
3. Allow some time to clear your thoughts. There’s nothing worse than having valid feelings, but because we are too overwhelmed and caught in the moment, we end up saying things incorrectly. Especially if your complaint is not urgent, you can sleep on it and then process it in the morning with a clear mind.
4. You are not alone. You are not alone. You are not alone.
Remember that you have a village around you: you might have family, friends, colleagues, classmates, neighbours you can talk to.
There are communities of special needs families who know exactly what you’re going through and are willing to listen: reach out, talk about your feelings, ask for help.
I really hope that you just watched this video for entertainment purposes only and you didn’t have to complaint to a hospital too.
But if you did, you can share your story with us in the comments!
How did you deal with it? Was it worth it?
Stay safe.
Ciao!
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