In 1997 Courtenay’s five-month-old daughter contracted pneumococcal meningitis and ever since has lived with cerebral palsy, epilepsy, hydrocephalus, spastic quadriplegia and scoliosis. In 2012 Courtenay’s two-year-old son was diagnosed with autism. As a result, Courtenay has gained extensive experience of health services in both district health boards and non-governmental organisations.
In 1997, when my daughter got pneumococcal meningitis, most of her brain died. We were given a clinician, an important clinician, and they had to come in and talk to us about how badly brain-damaged our girl was. Our girl’s tests showed that all of the left side of her brain was dead and most of the right side was also dead.
That is the way this clinician told us. I remember them sitting us down and being very matter of fact: you know, this is what it is, and this is what’s happened, so there you go. I’ll never forget it. We just died. We couldn’t believe how cold they were. There was no care for how we were going to react. We didn’t feel any kind of support around that conversation. They spoke to us like we were almost an inconvenience. That’s certainly how it felt.
I ended up having them removed from our care and they weren’t to deal with me or my family ever again. This didn’t go down well at all because I was a young Māori mother and this was a person high up in the hospital. We were supposed to be lucky to get them and it was almost an insult that we didn’t want them. But unfortunately their communication style was so poor, it made the whole experience of learning how disabled our child was – if it could get any worse, it really did because of the way they were talking to us. It was awful.
I absolutely felt like the system was different for us because we’re Māori. And young Māori at the time. I could feel the attitude was different. I certainly felt quite different. I remember a junior doctor telling me I probably wouldn’t be able to care for my daughter. He didn’t say explicitly that it was because I was a young Māori parent but I didn’t know how he thought he could speak to me like that. I felt like we were treated differently and not in a positive light. Being young and being Māori contributed to that.
Communication is everything
I believe health care begins and ends with communication in all forms. It’s something we need to do better. We have had a long journey in health care. Initially when we first came into the health care system communication was really poor for us. Our health literacy was really low and our emotional maturity was probably really limited as well, so communication was quite different to what it would be now for us. The clinicians that we were dealing with at the time weren’t equipped to communicate well with young Māori parents so it was just a big miserable fail. I really regret that it happened that way. Over the years I’ve worked really hard so that communication is better for us. It was a real turning point for me. It got me to think this is really not working, I’m drowning, what can I do to make this better for me and for my daughter. A negative experience but a positive outcome for me having to work a bit harder to figure out how I could make it better.
Both the best and worst parts of our experiences of the system in my experience have been about communication.
A positive communication instance I’ll share is that we’ve lost my girl a few times – I can’t imagine that conversation being a nice one to deliver. Luckily for us we’ve had some really great clinicians as well that we’ve dealt with over the years. Understanding how we might react, understanding the toll that might take hearing that kind of stuff, all of these really little things have made a difference when we have had to be told things like she’s not responding, we need to ring the family.
I’ve taken really positive points from different conversations that are actually really dire, and unnatural, and awful, but delivered in a way where we were spoken with, not spoken at. There were people there to ensure that we understood exactly what things meant at every part of the journey. It’s come a long way for us. I don’t know if it’s because it’s what we expect now because we’ve had such bad experiences and now we speak to people in the way we need to be spoken with. It’s been a really bumpy road with communication but I think communication is everything. Just everything.
Do better for Māori
How could our system do better for Māori? We’ve all got different barriers of our own, like language, understanding, intellect. We’ve all got different capacities so you can’t take one size- fits-all into any situation at all in health. Just ask the questions.
You sit down and say, this is what we need to talk about. Do you need support? What kind of support can I offer you? Just make sure that everybody’s on a level playing field. There’s nothing worse than being spoken at.
I know that a lot of my people, a lot of my family, still feel really inadequate when they’re dealing with a nurse or a doctor because their feeling is, ‘What would I know? I don’t know. Don’t ask stupid questions, just listen.’ They feel really insecure. It’s hard to try and convince them that nobody knows their body better than they do.
My father is going through a health journey at the moment and short of going in with him I have to try and tell him, ‘Dad, your treatment will not be less because you’re asking questions. They’re not going to do that to you.’ He’s of that generation where if you really have to go to the doctor, you just listen, take the medicine and leave quietly. When they’re speaking to a health professional who has years and years of study, it’s very hard to make them feel like they can speak, ask questions, and question results or tests.
We are in fact teaching people how to talk to us. It comes down to questions and basic interactions. It’s as basic as that and that’s where we need to start.
Author: Courtenay Mihinui – Tūhoe, Ngāti Awa