Happy Heart Clinic
Rheumatic Heart Disease (RHD) is an entirely preventable disease affecting the delicate valves of the heart. While it has been eradicated in the majority of the Australian population for over six decades, it is sadly still prevalent in our First Nations’ communities. Once a person has developed Acute Rheumatic Fever (ARF) or RHD, they require a painful monthly injection until they are 21 years of age or for 10 years to avoid ARF recurrence or further damage to the heart.
While their peers are out playing at the park, drawing or visiting the far-flung worlds of their imagination, this group of children face the fear and trauma of visiting a large sterile building to receive life-saving needles. And not just any needle, a very big, very painful needle.
The consequences of not getting their regular LA Bicillin injections are dire, with the medication helping maintain heart health and prevent possible open-heart surgery or even death.
Knowing the importance of getting things right from the start Clinical Nurse Consultant Erin Ferguson saw the importance of engaging these children and involving them in their care. Instead of being restrained or having clinicians become frustrated when they were scared, children didn’t care if the person was good at giving needles, they just wanted clinicians to be nice and for their voice to be heard.
In partnership with paediatric cardiologist Dr Ben Reeves, Erin extensively partnered with consumers to design a model that now helps children choose how they want to receive the injection and how best to distract them. But make no mistake, kindness is key!
Not only has the service drastically improved attendance rates, but it is also building an empowered group of health consumers into the future. And keeping them happy and healthy children in the meantime.
Happy Heart Clinic - video transcript
I'm Erin Ferguson. I established the Happy Heart Clinic along with our pediatric cardiologist, Dr. Ben Reeves. The clinic was established to ensure that we can give children with acute rheumatic fever and rheumatic heart disease access to care that is patient focused. We know that these children have challenges with the health system, and we need to engage them over the long term to ensure health and that they are given treatment for acute rheumatic fever and rheumatic heart disease.
These diseases are entirely preventable, and it's so important that we spread the word, make positive experiences for these children and families, and ensure that they have access to adequate health care, whether they live in Cairns or remotely.
What sort of monster loves to party? What sort of monster loves to party? A boogie man! (laughs)
DR BEN REEVES:
My name is Ben Reeves. I'm a pediatric cardiologist here in Cairns Hospital. And we started up the Happy Heart Clinic. So we saw a need back before all this started, we had a number of children coming in who had really traumatic experiences with the injections that we use to prevent rheumatic heart disease. So these injections are every four weeks for ten or 15 years of their life, and they're painful injections.
And you can imagine, a small child, that reluctance to come every month to get a painful injection is really tough for families. So we designed the clinic really to get around that fear of injections and to provide them a safe and comfortable space that they could come and get back on track with their treatment.
The key to the Happy Heart Clinic is that we include our patients in how it's developing. So it's a new service and from day one it's been in consultation with the children and their families about how we can help them access health care, how we can help them get the treatment they need, and how we can make coming to hospital and to see us in clinic more welcoming for them.
My name's Peter. I bring my son down to the clinic to get his jab every 27 days. Yeah, he was pretty scared first time when we first did it then he got used to it. It's pretty good. They offer their service. Ask you what you want, if you're comfortable with this or that. You'd like a little bug, ladybug or something to put on there, or ice pack. Even Entonox just to settle him down a bit.
I feel alright. Knowing that he's getting the jab every time. Not missing the appointment is very important to them, especially with the condition they've got. The people here, is here to help you to do what's best for you and make your life better when you grow older.
It was Wednesday he came home and my cousin, he noticed a limp in Jalil I said, Oh, what happened? He said he tripped at school. I said, okay, it's just a trip, you know. He'll get better. Thursday, it was still there, but you know, he could walk come Friday he couldn't walk or anything like that.
So I said, well, you can't get that from just a trip, you know. At the beginning we were told that we had to go to the medical center to get the injections, and there was a particular worker there that just didn't make it, you know, great that day. So I was like, Well, I'm not going to put up with this.
And if you don't if you just stick to something that people tell you that you have to do and you're not happy with it, like you've got to find somewhere else, something else, you know, to make you happy and, you know, a comfortable journey. Because I didn't know that this was going to happen right up until he's 21.
You know, ever since we've been coming to the hospital, the nurse and doctor Ben have just been amazing. As soon as we get out of the lift, it's just like our second family starts from there. It's just comfortable. They've just been a blessing, you know, for such a, I guess, traumatic time in a child's life. He was diagnosed when he was in grade two.
He's in grade six now. It was a blessing that we did get it right at the beginning because it could have been different. Very different.
Yeah. He's a he's good, you know, healthy little fella. He wants to play basketball, you know, just those things because of that injection, he can still live life at its fullest.
I have seen these children grow in terms of their confidence in themselves and their confidence in the health service over the past couple of years, which I think is invaluable. As I said before, if they go off track with their treatment, the ramifications are quite dire. They could end up needing open heart surgery and unfortunately, we know that rheumatic heart disease in severe cases leads to death.
So for these children, when they see someone that they know and trust and that is nice to them and kind to them and understands what they need, they're happy to go and see the clinicians and they're happy to go to clinic and they're happy to get their treatment. It makes all of the difference in the world.
Your heart looks good, Jalil.
He's got the best heart ever.
Well, I wouldn't go that far. But it's pretty good.
How about those Cowboys?
Cowboys suck! Broncos, are awesome. (laughs) Yeah, hey Jalil?
What! (laughs) No way. I didn't know this about you. We can't be friends anymore.
Katara was one of my new patients referred to the Happy Heart Clinic. She is a ten year old girl who was newly diagnosed a couple of months ago in hospital. I think the time for the staff to dedicate to these children initially, I find that they need extra time to get them on track with their injections.
And if that time isn't taken, that breaks down that trust for the child. They get really scared. They build up in their heads that they're going to get forced to do this painful needle. And as I've said many times, one bad injection I know is enough to throw these children off track, which is what happened with Katara.
So she came in here today to the Happy Heart Clinic to see if we could work with her to help her get her injection.
She doesn't like Buzzy Bee or the ice pack, but she likes the gas and bad jokes.
With Katara, we were telling some really bad jokes, having a laugh, singing some songs, just getting her to relax a bit and that we're not diving straight into "OK, you're here in hospital. Let's just get this this needle done and get you out of here".
We're making it a bit of a positive experience for her and for her mum. I want to make a difference for these children. And not just our children in Cairns, children all over with acute rheumatic fever and rheumatic heart disease. This disease is a disgrace, especially in a first world country, a wealthy country.
We shouldn't be seeing this. So if I can make that journey better by being kind, by making them feel comfortable, by letting them know that I genuinely care and I'm here to help in any way that I can, then that feels valuable to me and that's why I come to work each day to try and make a difference.
Unfortunately, she's still quite scared and traumatized and mistrusting of health care.
Can I hold your hand?
Ah! I don't want the needle.
Listen, you just got to trust us. You just got to trust us, okay?
We know these injections work, which is why I'm so passionate about making sure I spread the word about giving these children a good injection experience. I really advocate for people in general to allow at least half an hour with these children to give a bicillin injection. And that's even for a child that's doing well. What I reinforce to people is you don't have to be the best needle giver in the world.
Obviously, it is a bit of a skill giving these injections. But the thing that the kids say to me over and over and over again, that makes the most difference and what they remember, is that people are nice to them.
You've got the needle.
I don't think we're going to get this done.
So I've had quite a few situations similar to what happened today with Katara. Actually, most of my children who come to the Happy Heart Clinic, that's a very similar scenario, that they're really resistant. They say, yes, I'm ready to do it. And then at the last second move. On the way out, I could see she looked really deflated within herself and quite upset with herself, which makes me really sad.
And I said to her, even though you didn't get the needle, which is what we came, what you came here to do. That don't be disappointed in yourself, because just coming in today was really brave when you've been so scared before. The success for me was that I kept my promise to her. I didn't I didn't force her.
I didn't restrain her. If we invest in these children early and take the time now and build that trust now, then we can hopefully end up with adults who want to access care when they need it.
There's no doubt we're seeing more rheumatic fever in Cairns as well as in the Cape and the Torres Strait, where I provide outreach service. So the problem is getting worse rather than getting better. We're seeing it in younger children. We're seeing younger children needing heart surgery at a younger age. So this is a big issue. This is an issue for Indigenous communities, even in fairly well serviced areas like Cairns.
We've got lots of GP practices, we've got a modern hospital, we've got good access to care, but we're seeing more rheumatic disease and it's a real concern for the future. And I think rheumatic disease is an area in medicine that has been inadequately funded for many years and we need a really concerted catch up to provide care for this. This disease was eradicated in white Australia in the fifties and sixties, so it's shameful that it still exists in our society today.
I can't stress enough how invaluable it would be for us to have a health worker as part of our team. It would help our families, would help us as clinicians, most of our clients. And when I say most, I mean over 95% identify as Aboriginal or Torres Strait Islander. We need that cultural voice, that cultural presence with our consults and someone providing that education and cultural experience and awareness within our clinic.
I'd like to end rheumatic heart disease. I think we have a good understanding of the disease and its process. I think advocating for better care and better funding and more resources will mean that we can entirely prevent unnecessary deaths from rheumatic disease in the future.
My goal would be to see these clinics rolled out where they're needed across Queensland and across the country and even globally. We know that this model works to help children and their families gain access to much needed health care. For more information, visit the Clinical Excellence website.
Listen to our podcast on Happy Heart Clinic: Improving children's experiences of regular LA Bicillin injections in rheumatic heart disease.
Visit the Happy Heart Clinic page on the improvement exchange to learn more about setting up the service.
Rheumatic heart disease
Learn more on Queensland’s approach to ending acute rheumatic fever and rheumatic heart disease
Ending Rheumatic Heart Disease
Read the Ending Rheumatic Heart Disease Queensland First Nations Strategy 2021-2024