Paediatric Sepsis Series — Family Support and Stories

Transcript

Throughout Welcome to our

Pediatrics. That's a series. I'm just

going to quickly pop everybody on there we

go. I acknowledge the traditional owners of the land on

which we all work and meet today for me. I'm on

Gabby Gabby country and I respectfully acknowledge Elders

past present and emerging who continued cultural

and spiritual connections to Country. I'm Kate

wellard, the manager of the Fantastic Queensland pediatrics

at this team and presenting today. We

have our award-winning and World leading Advantage

social workers Megan O'Keefe and

Alana English. We are also extremely privileged to

have Jenny Barber one about incredibly valued

family representative joining us today, Jenny Alana

and Megan will be talking about

family support and stories and practical

ways that you as clinicians can support

families and children affected by sepsis.

Just a couple of quick housekeeping things. If you

can please pop your sites on mute, and if you have

any questions, don't be shy pop them in the chat and we'll

be answering them at the end of the session today. It would

also be wonderful to know where you're all dialing

in from today and what your role is are. So

if you could pop that in the chat, too now, that would be great. And finally

at the end. We'll post an evaluation

survey and we greatly appreciate your feedback so

we can improve and help to make your needs now over

to Alanna Megan and Jenny.

Thank you so much Kate. And so good afternoon

everybody and thank you so much for joining us today to discuss

the impacts of pediatric sepsis on families and

specialized support and resources that have been developed by

the Queensland Pediatrics sepsis program for families affected

by Pediatrics sepsis. So as Kate

mentioned, we will be hearing from our very very brave.

Mom Jenny who will be sharing her story

of her son having sepsis the type of support that

she needed at the time and how she has since engaged with

the Queensland pediatric sepsis program Family Support

structure and just for the new people that

have joined in as Kate mentioned. We do have a very

busy day planned. However, we're very keen for your involvement. So please just

pop any comments or questions in the

chat throughout and we have some time at the end to go through these with you.

So I would also like to acknowledge your

traditional owners of the various lands on which we all meeting today

for a learner and I that is the yogurt and

terrible people we pay our respects to Elders past present

and emerging for they hold the memories the Traditions the culture

and the hopes of Aboriginal and Torres Strait Islander people across the

country. We also pay our respects to Sherry skill

a proud pajara woman from Southwest Queensland who

has designed this beautiful artwork for our program that you

can see on the screen. Now, it's titled healing journey

and tells the unique story of families experiences with

pediatric sepsis. Sherry is an Aboriginal artist

who calls her artworks big nagala, which means I am dreaming

in Pajaro language.

So as we have a very broad range of clinicians with

us here today, we thought we would start with just a very brief overview

of what sepsis actually is and so

in general terms sepsis happens when the body is trying

to fight an infection and that can be any infection but

starts to attack its own organs and tissues.

So it is a medical emergency and children with sepsis

often deteriorate rapidly. So our program

has developed this one minute animation for families that gives a

really succinct overview of what sepsis is

and signs and symptoms to look out for

So more than half of sepsis cases worldwide occur

in children with an estimated 25 million cases

3.4 million children died and almost

all were left with a broad spectrum of physical cognitive and

psychosocial impacts.

So while this sheer numbers and the impacts of sepsis are almost unimaginable

and just one of the very real faces of sepsis

is this beautiful girl that you can see on the screen now Mia, so

our little Wonder Woman Mia who is previously a

completely healthy and well for your old girl who had never been

to a hospital develop sepsis in response to a virus

resulting in her becoming a quad amputee and

her and her family facing many harrowing physical emotional

and psychological impacts along their journey into their

new lives.

and

someone has just mentioned that they can't see the screen with Mia.

Can people see the the photo the current

slide that has the photos of me on it?

Yeah. Okay. Great.

So while the figures in the physical impacts of

pediatric sepsis have been known for some time until recently

the available research and the support networks focusing on

the unique and holistic experiences of families

impacted by pediatric sepsis and what their specific

support needs were just really did not exist.

the Australian sepsis Network national action plan. We completed

a qualitative research study involving 11 Queensland

families of children diagnosed with sepsis and managed in

Pediatric Intensive Care.

This qualitative study explored the lived experiences of

these families to better understand their sepsis journey and their unique support

needs.

So the themes and the support needs that were identified by these families underpin

the development of our family support structure as presented in

the diagram on the screen. Now, this is an

evolving program that aims to provide key resources and supports for

the child and the family at all points throughout their Journey from the

acute phase of diagnosis to discharge longer

term recovery and into bereavement if their child did not

survive.

So a key strength of the family support structure is that it

is co-designed by our consumers and in part delivered by

our consumers.

So this design reflects the value that our program holds for

The Unique expertise and advocacy that

can our consumers bring and ensures that all of

our developments are created to best meet their individual needs.

So the various aspects of our program are multimodal and

thereby increasing the opportunities for families to connect and process

information at any time during the acute episode of sepsis or

afterwards from any location within Queensland or

for that matter across Australia and the world with

regards to our website accessible resources.

So the sepsis clinical Care standard that was

launched in June of this year will help to ensure that sepsis

is recognized early and patients received coordinated best

practice care so that the risk of death or ongoing willbidity is

reduced. This includes timely recognition of

sepsis early inappropriate antimicrobial therapy and

continuity of care from the acute setting through

the discharge and survivorship and bereavement.

So the clinic the sepsis clinical Care standard contains seven

quality statements describing the care that should be provided. However, it's

really a statements for five six and seven as

you can see on the screen now that are most relevant when

it comes to family support so many of the resources and

supports that are offered by the Queensland pediatric sepsis program

that Elena and I will be speaking to today can be

used by clinicians to meet these quality stand statements and

ultimately meet the unique needs of families impacted by

pediatric sepsis.

So the commission has also developed several resources to

support the implementation of the sepsis clinical Care

standard and a number of studies a number

of case studies. Sorry that illustrate best practice and innovation in

sepsis care. So I'd really just like to draw your

attention to one case study in particular today titled implementing a

pediatric sepsis program in partnership with families

affected by sepsis. This case study summarizes all

of the aspects of support that we will be speaking to today and

provide you with further links to the resources. It can

be found on the Australian commission for safety and

quality and Health Website Healthcare website.

Um, so as I mentioned we're going to be touching on each aspect

of our family support structure today. However, both a

linner and I are always very open and Keen for you to

reach out for further discussion and information of any of what

we have developed. So firstly is the development of our website

that has information focused for

families clinicians and research this is the

family's tab of the website and this landing page provides information

about all of our established Family Support programs, and

those that are in development.

We have also established a pediatric sepsis Family

Support Network. So the focus of this network is to create an

opportunity for connection with the

sepsis community and for active participation in our

response to managing sepsis at all points of the healthcare Journey. So

families can easily register through our website or

through scanning the QR code on various Flyers that we

have developed and we'll talk about soon and this registration

gives them access to all or any of

the options listed on the screen.

If you're speaking with any new family with a child with sepsis, please

share information about the network and encourage them to register

because it really is our best sort of first point of contact with

families where we can talk to them about all of the supports that we have available for

them.

A key thing that came from our research was this extreme isolation

that families experienced in having a child

critically unwell with and potentially having died from

a condition that they had a limited understanding of or

really limited support around and how they were

desperate for connection throughout the entirety of their child's illness recovery

or death.

With another parent who had been through what they were going through and it

could provide this unique type of support and guidance that no

one in their existing support networks appeared able to provide the they

talked about wanting to be connected with their peers.

And so we took the opportunity to co-design the world

First pediatric sepsis specific payment or

program.

So this program provides families with a child diagnosed with

sepsis both surviving and bereaved and opportunity for

validation and normalization of their experience by connecting

with a family member whose child was diagnosed with

sepsis more than two years ago.

Our peer mentors are parents and carers who

have that first-hand experience with the challenges faced by

families with a child newly diagnosed with sepsis and hence

can assist them in navigating this new experience.

So the program which is led by myself and Elena as

the advanced social workers with co-designed as

I mentioned by consumers and is delivered by our consumers

with collaborative input from throughout the

design process from Key stakeholders, including the Australian

Center for research Innovation. Sorry the

Australian Center for social Innovation, the chq bereavement

service and sent Jude's Children's Research

Hospital in the United States.

And so this co-designed and collaborative process really ensure

the creation of a program with a thorough evidence

base and a formalized recruitment onboarding training

and supervision program for mentors.

The program can be offered to any family

within Queensland and families can self-refer by registering on

our website. We currently have seven trained mentors

across the bereaved and survived spaces who

are ready to be matched with new families with a child with sepsis. So

we just encourage you to please speak to new families about our

peer mentor program and encourage them to register as

a mentee or if you know families whose child had sepsis more

than two years ago as a mentor or direct them

to speak with a letter and I for the conversation about the

program

and over to Elena

Megan so I'm just going to talk through some of

the other aspects of our family support structure the firstly

our journey through steps is video series. This was developed in

response to direct feedback from families indicating

the need for consistent research-based and

timely education. It was launched in March 2021, the

eight-part series aims to support families by

providing information and guidance on each stage of

their child's hospital Journey from initial diagnosis through

to Intensive Care Rehabilitation and support after

discharge. The key messages are provide

provided primarily by families who've had a child

diagnosed with sepsis and key clinicians working in this area.

The four families within the videos have children of a range of

Ages and are from Metro and rural areas.

These families bravely and kindly share their stories and

we ensure that they lived experience is Forefront in the

videos validating the real experience of the burden of sepsis for

families.

In addition to the two videos focused on each stage of

the journey. The final video is purely parents perspectives providing

that direct peer support and education for

other families.

You can direct families with a child with sepsis to these videos. They're available

on the families page about website encourage them to

view them and you can also use them as a starting point for ongoing discussions

within their Primary Health Care team.

In addition clinicians may like to view the video series to increase

their knowledge about sepsis. You may find that it

assists in helping you to understand the burden of sepsis on

families as well as understanding other sepsis resources and

supports so encourage you to check those out on

our website.

For families who register with our family support network. They

also receive our quarterly newsletter the sepsis Connection in

each Edition. We share updates from the overall Queensland

Pediatrics program. We Spotlight an

aspect of the family support structure providing information

about research projects and other opportunities for families

to be involved and one of our families shares their child's story

of their Journey with sepsis.

We also discussed a topic of interest for families such as

grief and loss and advocacy with the aid of

sharing relevant information and providing an opportunity for further discussion

of these topics with family and friends.

We've also developed a range of virtual and printable resources and we're

adding to these all the time. This is just an example of some of the resources that

we currently have available and these can all be

accessed from our website. They can be downloaded from the

website or you can actually request printer copies of these from

us at the program.

The resources have been co-designed with our consumers

and clinicians and many of them have been translated into 10

different languages with guidance from Key stakeholders within

the refugee Health Network the languages

in which these were translated into were determined based on

those cultural groups that are identified as having the most barriers to

accessing Healthcare in Australia.

We recognize as a family support structure evolves that

we need to continue to consider how to meet the needs of all families with

many key groups having unique needs these include

families from rural and remote areas with often limited

access to tertiary health care families from culturally

and linguistically diverse backgrounds and Aboriginal

and Torres Strait Islander families. We know that Aboriginal Torres

Strait Islander children residing greater proportion in rural

Queensland and are therefore likely to be some distance from a

tertiary hospital and potentially even a 24-hour medical service.

We're also aware that Aboriginal Torres Strait Islander children

have a high incidence of life threatening sepsis requiring

ICU admission, and they're particularly vulnerable to

pour outcomes from sepsis.

We've appointed an Aboriginal Torres Strait Islander project officer

within our program Karen and she can be contacted the email

address that's on the screen Karen's been

making connections with local community members educating and raising awareness

about sepsis and developing a range of resources that

are targeted at Aboriginal and Torres Strait Islander families.

Karen is Keen to engage with more clinicians across

Queensland to support them in supporting families of Aboriginal

and Torres Strait Islander descent.

When considering how best how to provide

best practice to Aboriginal and Torres Strait Islander families, we would

encourage you to consider some of the questions that we have on the screen here and

you'll be able to access these when we send the

slides through to you or feel free to take a photo of those now.

Can be happy to speak further with anyone who would like to discuss these

ideas specifically in relation to your health service to

start to have a conversation about ways to think about this and

the particular needs of these families.

We know that sepsis is a life-changing and disability-inducing event

and that many children diagnosed with sepsis who do

survive experience long-lasting physical cognitive and

psychological effects and yet there's an overall lack of

evidence regarding interventions to support recovery after sepsis

improve quality of life and to reduce

ongoing morbidity. Some of the reports here on the screen are

some of the programs and studies that have

been undertaken in terms of trying to understand these needs but we do

know that there's very little information in this area in terms of understanding

quality of life and ongoing morbidity for

these children and families.

With an ongoing aim of reducing the overall burden of

sepsis on children and families and increasing awareness for clinicians of

the long-term impacts of sepsis. We're working on

developing a postpsis Statewide model of care.

Multiple online and face-to-face focus groups will be

used to explore families and clinicians experience of sepsis

following discharge from hospital and the perceived gaps in

service recommendations for the development and implementation of

a model of care that identifies Key Resources

stakeholders and supports for all families affected

by sepsis across Queensland will be collaboratively developed

from the findings.

We need to ensure that this model of care includes interventions

proven to be effective in minimizing the impact of posts of

syndrome covers the Continuum of sepsis care,

including bereavement and provides the coordinated consistent

and Equitable approach for All Families.

As the lead into in running the program in

the project in relation to this model of care. I'm really

Keen to talk to as many people who are interested. So please if you're

interested in being involved in a Focus Group contact me

via email on that address there and I'll

certainly be in contact to

Let you know about an upcoming Focus Group.

back to you mean

Can I just ask?

For some new people that have joined in to make sure everybody has

muted their microphones. Thanks so much.

So I now have the privilege of introducing you

to the wonderful Jenny Barber. So Jenny

is the mum of four beautiful children and

young adults and her younger son

being this handsome little man that you can see on the screen now George.

half George became unwell with gas relaxed symptoms and Jenny

bought him to hospital what she expected to be some straightforward

treatment. Unfortunately George deteriorated

very quickly and it was identified that he had sepsis.

So he was transferred from their local hospital to the Queensland

children's hospital where he was placed on ECMO. However, due

to the severity of his illness and several serious

complications George heartbreakingly died

three days later on September the 26th.

Over the last three years Jenny has shown she courage and

vulnerability and commitment to making a

difference in the world in honor of her Beautiful Boy George and

we have had the absolute pleasure of working

with Jenny as she both receives and provides support in

the Queensland pediatric sepsis program.

So welcome Jenny. Thank you so much for joining us today.

Thank you. Thank you for that beautiful intra introduction of

our glorious George. And so

again, yeah that was just a very brief introduction to

your beautiful George and I think that's probably a good starting

point for us is to hear from you more about

George and your family and your experience

with with George having sex with us.

Yeah, absolutely. So our experience has

Megan had expressed. We just thought George

had gastro. So when we presented at the hospital

George had just been vomiting overnight. I had

shown no signs of diarrhea, but because

he had a temperature as well. I thought it would be best to sort of go. He

was still not having very many fluids. I thought it'd be

best to go to our local hospital and we did when we presented

there within about half an hour being there had this tidal wave

of diarrhea that suddenly appeared from nowhere.

Um, so we they sort of did the

usual making sure they get IV line in him and giving him some

fluids to back up where he was and we stayed

there for a while in emergency and when they would we'd be

going off to the ward but just prior to us going to the

ward as we were getting ready to go. Obviously that was several

hours later. One of the nurses who came to collect him

set out loud. Am I taking him like

this? That was the first sort of thing as I look back

after thinking of George's story. Why did she

say that and no one questioned her? Why did

she ask that question? No one really questioned her

but we still sort of went around to the ward got ourselves

set up there within about half an hour being there. I was

packing George's things away and his Ivy line had beeps

and he'd been asleep on the bed and was quite comfortably relaxed

and I turned around and there no sort of walked in at

the same time and I could see that George was all mottled. And that

was sort of the first sign that there was something Gravely wrong

with George and they pushed their magic.

Button, and everyone sort of came running in and started to

sort of work with George and get his central

line in there. They was the first time someone had said

that George was Gravely ill and they were

looking at moving him Teresa so that they could actually intubate him

because the oxygen they were giving him at the time he was still

working very very hard and they'd be no signs of

this showing previous to that so that

we when we got around to recess and they incubated George

it was the first time someone had actually mentioned there was

a possibility that George had sepsis now looking at transferring him

to the children's hospital. So we

had ourselves transferred to the Children's Hospital

from there and that night

while we're waiting outside. Once we'd been

transferred there and George had previously had open

heart surgery when he was about four months old and his

heart doctor came and saw a straight away and said

that hey look his heart looks fantastic, you know, he's had

looks really great.

Lungs look fantastic, just to ease our concerns

obviously suffers concern would be maybe there'd be

some issues with that and our biggest

thing when we sort of got there was the we had a huge

gap in time where someone came to speak to

us when we had arrived at the hospital. So we put in a

room waiting in the Intensive Care units in

a waiting room and we didn't actually

have someone come and approach us for about two hours.

Before someone actually came to see us so that was

a little bit scary because we didn't know what was happening and we just really

desperately wanted to see whether George was. Okay. And so

by the time he sort

of got around to see him they had obviously said

everything up with him with all the lines of different things that they were

treating George with and and it said that there might

be a possibility that he'd have to go on the economy machine the life

support machine, but at this stage they were quite happy with where

he was and that they did believe it that stage that he definitely

had sepsis and that there were treating him accordingly for

that. So within eight hours George

was put on life support.

And then within about

eight hours after that he had his first stroke.

So he had his first stroke and we found out that he lost all the

all the left I think was the right

side or the left side and trying to remember now all the right side.

I'm pretty sure it was of his body. He had lost the

feeling and all that right? So that was the diagnosis from

there. And then after that they were

looking at

and putting a drain in as

well into George because it was quite swollen, you know

from all the different things that he'd had in

order to help with him with his sepsis.

Um, so going to meetings was quite difficult as

well because I felt like I wasn't always being heard. I

really wanted them to really go for it. And there were times that

in meetings it it didn't feel

as though sometimes they were we're honoring

I guess in some sense what I wanted them to

do. They there was a lot of

Doubts that was there did I really understand? What was going

on? Did I really understand what that meant if George was going to have he

had the stroke did I really understand what that meant

for our life afterwards and I was quite Keen to sort of push on with

that and and said, yeah, absolutely, you know,

that's that's you know, take George. I'm in however

he needs to come to us. We'll just run with whatever

we need to do and we will give George the very best

life that he absolutely deserves. So we're also told

that George would possibly be might have

to have his leg amputated because he had started showing some

signs in his left lower left limb

of that dying off as well. So we just

said okay, you know, whatever we need to do. We'll happy

to progress and do that so over

the next day or so, I think on the Wednesday, they put the drain

in on the Wednesday and he started looking a bit like how George

again so that was quite exciting to see our George

looking his beautiful self again and not say swollen and

puffed up and that was to sort of relieve some of the

Should that having all those extra fluids. So that's a combat. This

sepsis was creating too much pressure on

his heart and his lungs at that time.

So our amazing family who'd been

by our side the whole time got to see our beautiful George in

the best state that he could be out and they

sort of all went home a little bit at ease on that Wednesday night

feeling a little bit relief that maybe yes George

was going to push through and he was going to give it his best shot as much

as he can. However that evening at about 11:30. We

got had to go off and have a CT scan again. And that's

when we're told George had lost the whole right side of

his brain. There was no blood flow whatsoever to his

brain. We still sat down and had a

meeting. I thought everyone was incredibly generous with their time that they

gave me at that, you know, during the hospital stay and

they said that it was still a viable

situation and I said that I still you know wanted to if

we could still just see what George was going

to do. See where George was going to be at and he would

let us know when it was his time to go he would just

let us know that if it was not working he would let us

know. So by the next morning I

A sort of went to my room at about two I was

staying close by and neither to rest because it's quite exhausting

being there in hospital, you know, all the things you've got to listen

to and the things you've got to take in and trying

to make all these decisions that I that I hope and

as a mother we are making the right

decisions for for my son and the next

morning. They sort of called me down and said that George's pupils

were fixed and dilated and that's when we had

to make our heartbreaking decision to just let

him to let George go and I think

that's the biggest thing for me that I held on to after

after George is knowing that I was

now going to be responsible for signing that form.

To say you can turn his machine off.

Sorry.

That his life was no longer with us.

So sorry.

Um, and that was very hard to be a very long time to

get over that whole process of knowing that I was going

to be the one with my name on there.

Signing his life away. So

um, but for me as a mother, the biggest thing that I found quite

difficult was that there wasn't

there was no

Brochure that told me about sepsis someone came

and talked to me about sepsis and and they

they told me what sepsis meant

but there was nothing I could refer back to there was

nothing. I'd sort of grab a hold of and go. Oh, you know, what did that mean

again? What did that? What is it? They're doing you know, and it's

like and I'd be there at his bedside and I just I

couldn't cuddle my son. I couldn't.

You know, I found it really difficult to try and be his mum at

his bedside. You know, it was like he was there. He was

hooked up to life support because he had open heart surgery before his life

support was going in through his legs. He was quite

fragile because of that so I couldn't just climb

in the bed with him and give him a big huddle. I couldn't I just didn't know where

my place was. I didn't want to interrupt the flow of

what our amazing picu nurses and

doctors do with making sure they could offer

all the assistance that they could to George, but I just didn't know where

I could stand I didn't know you know, I wanted to reach in and

kiss him and cut them as much as I could. I wanted to sing to him

and do those things, but it just felt.

As though I just didn't feel right for

me at the time. It was just you know, I really wanted

to say desperate but I didn't know how to do that in the

flow of what needed to be happening with George in that

right any you you know, there's just so much going on

there isn't there and that we hear this from every family

that's child has sepsis is just that she

rapidness of

how quickly their children deteriorate and you've got you

we've talked about you know, that story that you've

just told then is it within a span of three days which is nothing and

so, you know that the trauma and

the processing of information and the impact of

all of that, you know, you talked about that you had the words sepsis

mentioned, but you won't hand it

anything. So how did you find that experience in

sort of gaining and understanding of sepsis did

you was there anywhere that you could turn to at the time

and knowing again that this was three years ago. So before we sort

of developed the the resources that we've talked through now.

Well, I did have this really lovely social work. It

was tell us about actually happens to

be Megan. So it was actually

amazing at the time who had told me

about a research.

Program that they were doing at the time in the hospital and would

I be interested in this I was approached on the Tuesday.

Would it be interested in actually having George as

a part of that research of a child who has sepsis

and I said, yeah absolutely hands up,

you know anything that might help understanding any

understanding of where we're at. We're you know, where we were so

it's quite fortunate I was able to sort of reach out to you every

now and then just say hey look, you know, what does that mean? You

know where there's

that actually you know what I think the hardest

thing is trying to get people at the time you want people to talk

to because obviously a hospitals are very busy

place and it's not just my son who's there? There's a

lot of other very sick and unreal children, but it's

those little moments that I wish maybe if

we had some kind of website which I know

we do have now or something I can just click on that just

says, okay, that's what that means.

That's what it is. That's what we're doing. And and because

you do hand over to another group of nurses who don't

know your son you're going to introduce everything again.

So you're starting a new platform every 12 hours and

you know, you're starting and you're hoping

that they're gonna understand you and where you are as well and

and believe in you enough that you trust your guts

with your children. You trust those feelings that

you have if you know something's just not right. Yeah

that you're going to say Lord kind

of talk to a bit about there around how it's so important to have

the conversations around what steps this is

and what to expect and what families can you know, ask about

and and everything but also

it's important to have that real tangible information like a

website or a handout because as we mentioned before we know

the impact that grief and Trauma has on our ability to process information

and retain information, so I think

that's where it's really important to have that multi-modal type of of

information, isn't it?

Absolutely. Yeah the same. Yeah. Absolutely. I think

just and having you know, just I know

that we say we go back to our arrange and go to bed and most

of the time I just sitting there on our phone just something that we can tap into

on your phone because when you do look

up sepsis I know back then when you look

it up there's a lot of these things about Adult Services, but there

wasn't a lot about pediatric sepsis at

all, you know, and then when George passed away as well,

I asked you very specifically was there a

bereavement group was there other families I could reach out to

is there someone that I can talk to that understands

there's no grief

that I'm now experiencing and we actually didn't have

anything. Yeah, there was nothing there was there

was Compassionate Friends in Brisbane was about as far-reaching

as it went. There was that what was in our hospital

at the time was just to do with palliative care and

cancer children, but there

was nothing sort of there was nothing else.

Us and I was a bit, you know, I sort of walked away from

that and it's one of the reasons why I came back is because

I do see the value and importance in

having that early connection whether the

early connection is just sitting with someone and saying

nothing or someone ringing you on the phone and

just knowing that they're just going to listen or if you just want to sit in

silence understands the need to pause understands the

need to just step away from a moment from you know,

and have maybe just go ahead and share at the ocean,

you know, just just allow yourself to express

whatever you're feeling at that time and

just gets it. Yeah and just and I think

what you've just said then someone who just gets it is the the

perfect segue to us having a bit of a talk about the parts

of the queens and Pediatrics this program that you're

involved with Jenny if you would be

yeah happy to talk to us a little bit about the the pimental

program and some the other social media

and media opportunities that you've engaged with.

Yeah, absolutely. So I'm involved with the w******* Estate

Group as well. And they're like-minded families

obviously in clinicians who are dedicated to getting the

message out there for Pediatric sepsis, which

is the group that we are focused on and making sure that we

allow people every opportunity they

can to know that there is this information there.

There is someone to reach out to whether it

be a peer mentor whether it be a advanced social

worker like yourself an alarm as well or whether

it just be the Children's Hospital website, which has

that option and take the features available for you

to access information about sepsis as well.

You know, they've also

one of the reasons why I wanted to be a peer mentor was

so that

I could make sure that someone's time after losing a

child with sepsis meant that they had had someone else that they could talk

to about the rush. That sepsis has

on its ability to take over our child's life

and have them.

Possibly pass away or move on to a

very different life if they've actually survived sepsis. I

don't think anybody comes out from having sepsis without

having some kind of form of

something that they have to then walk a different path in. Yeah,

and so for me, it was just a matter of just having that

option to be able to converse with

someone be able to let them know that people

are there that we are there

and we're available for them to chat with we're available

for them to message when they lead to

to know that they don't have

to walk that path alone and that they can do it with someone

who does holy understand what that feels like.

yeah, and I and you know, I think you've you've touched on a

really important point there that you've definitely acknowledged all of the incredible

attributes of the clinical like a medical

teams that looked after George and what their special role was and how

you could rely on them for you know for looking after

George for talking you through medical the medical side

of things, but there is that really unique experience of

connecting with another parent who just gets it

And he said that something that you would have appreciated at the

time and so now something that you're really trying to to pay

for it in your role as a mentor.

Yeah, absolutely. Most definitely I think

it's also important to and for me personally as

well. I've been able to go back to the hospital. It may not be something that someone

else can do and that's okay, but I've really

wanted to be able to go back and have a chat with the clinicians and

I was so grateful to have that opportunity to go back and talk

to them about my experience as well being there in the

hospital with George and the different things that we can sort

of learn from parents experiences of being

there with their child and how that feels with

being in a clinical environment and what that actually

means to the doctors

and nurses who are caring for our children. We have such great admiration

for the dedicated work that they do but it's

also knowing how to balance that out and

make sure that they're still recognizing and

hearing sometimes what families

need and want during those difficult times as well.

Yeah, and I think yeah you you've really

kind of highlighted there around how

How important it is to have different types

of support at each point of the journey, you

know from that really initial state of

diagnosis. And when George was

unwell and you didn't know what was going on, but you're hearing these little comments around in my

in my really taking him like this to the ward or I mention

of sepsis to that time in in ICU and

then afterwards and you've mentioned there around how

what worked for you wouldn't necessarily work for another parent,

but I think the the important part of all

of this is that we offer it to families that families know.

What is it that all of this is available to them and

we can tailor it to meet their needs.

Absolutely. I think that's what's so great about it is

that it can be tailored to exactly what

their situation there's no right or wrong way. They never

will be you know, and we're all going to come with

whatever we can and can't do and that's never

a wrong thing. Like how we grieve

individually is a very personal Journey.

It's not going to be it's not going to be the

same. There's no magic book of magic answer. That's

just going to say this is the way you're expected to do it. It's that's not

true. You know, you do it the way, you know

feels comfortable for you. But doing

a line is hard it's hard work. You know, I still went home to

my family. I had a beautiful grown up

daughter with a grandson that was born two weeks before and

I was still going home to this family situation

and I had my seven year old son at the time that I

was still going home to and I was having to be the mother for

everyone and making sure I'm looking after everyone but in

the midst of all that as I went to bed.

A mother had lost a little boy and it was

it was.

It was very hard. Like it was really hard those moments alone

at night time where if I'm sharing my

grief too much. How am I supporting my own children too?

You know, it's like I don't want to collapse for them. But I also want

to make sure that I'm getting I'm getting that

support as well. Yeah. Yeah, that's

what beautifully Jenny and I think just links

back again to to the need to know. Do

you know to have support such as a peer mentor?

The payment tool program for families when they're in those spots to go. Who do

I talk to about this? Because I've got my hat on as a mom

and I need to kind of step out of this room and be a mum to my other kids and

go to work or do all of these other commitments that I have, but

I also need to wear that hat of just being able to grieve the

loss of my boy.

Absolutely. Yeah, and so Jenny,

I guess this is probably a good point and I think you've a

good point in our conversation.

To talk about some key messages that you have for the

clinicians that have joined us today and you've already touched on

so many gems and so many beautiful pieces of advice. We

have a large collection of

clinicians here with us today from doctors nurses

and Allied Health. But yeah

any sort of real key messages that you

want people to walk away from today's conversation with

I think the biggest one for me is here everyone here everyone

and know that everything that everyone says

could be because it

seemed from different eyes. It could be just that

little bit of a spark that says, you know, why is it that

person said that why is it you know that they said

that what did what it what was it that they say that

inspired them to say something like that?

you know, I think the other thing is too is just trust

the mother's carts, you know,

try some others gut instinct, you know, it's like I didn't

feel like I was unheard but I thought there were some moments obviously

where I just feel that

The the waiting times in between being told information.

Would get quite long. You know, George would go for a CT

scan and some I wouldn't hear back for an hour and a half and I

I knew it wouldn't wasn't taking them an hour and a half but there

was a little bit of a gap sometimes and that waiting in that

way then can be harrowing. You're just like,

oh my gosh, you know, what do I do and just and and just

believe that a mother does know what she

wants and can do what she can physically do for

her child just believe that so for mum sits in a

meeting and she said and she says to you I will take my

son's life over his limb any day if I

say that you trust that I know that

I can offer him all the love.

He deserves trust that.

Because I promise you we will.

So sorry.

Yes.

Thank you aren't the words for us to express our gratitude

for you joining us today and and having this conversation with

us. I think I've said this to you

before that. I've heard you share your story with George time and

time again, you know through your media appearances and

payment or program and

many other aspects of the The Queen's own pediatric sepsis program

and you show so

much strength and courage in doing that. But at the as you

said

Just below all of that. You're a mum who lost her boy and in a

heartbeat you go right back to that day. And so we know that this is no easy

feat for you to come forward and share your story and

have this conversation with us. So as I said, we can

only express our most sincere gratitude for you

today, and I have no doubt that it's going to be your words and your

your pieces of wisdom that

the clinicians that have joined us today are going

to remember so thank you so much Jenny, but I just

really really quickly and I'm taking a bit more time because I just say I had to

take my 10 year old who had

Um tonsillitis to the emergency and I was so excited

when they did a sepsis screening on him and how

advanced we become it sounds ridiculous. But can

I say of a child with it having taking him there and the

doctor came up and said would you mind if we did that I was over the moon.

I was just like are you kidding me? Yes, and I think I rang

you on message you and I said to you look how exciting this is. Look what's

happening. Look where we are. This is

exciting. We are making this amazing grounds

now to make sure people do know

and you're all part of that process everyone

who does their job is all of that process and

we couldn't thank you enough for wanting to do that. The biggest

thing at the end of the day is George had an amazing life. He was

an incredible little boy and we're very very lucky to have him and

we wouldn't have changed him for the world. So thank you

and I remember always remember this will

stick with me forever and I hope it sticks with everyone forever George's little

motto in life, which he literally did on a daily

basis was stop and smell the flowers.

You have many many photos of him stopping at every chance that

he could to stop and smell the flowers. Yeah. Yeah, very

true. Very beautiful little boy. Thank you so much Jenny. Thank

you.

but now we're going to

move to the part of the the day that I have been most

looking forward to and I have the opportunity to introduce wonderful

Tiffany's who's joined us today. Thank you,

Tiffany.

My pleasure. I'd just like to introduce to

his saying that Tiffany is the mother of Austin who in

with what initially appeared to be a cold after numerous GP

and emergency room presentations over the course

of a week on Austin wasn't getting any better. It was identified. He

had sepsis

During Austin's lengthy stay in hospital Tiffany Drew

on her skills as a detective to research and

investigate to gain an understanding of what sepsis is.

So we're going to talk through a few things today. But Tiffany, I wonder if you could just

start please in sharing with everyone your story

Austin's story and and your journey of sepsis.

Yeah, you pretty much summed it up just spiders.

That I bring back emotions. Um,

started off with just being unwell just

generally unwell not sleeping through

the night just being a little bit irritable, um

talking to the GP twice. They

said it's just an upper respiratory infection. He'll be

fine just monitoring Panadol and nurofen he'll he'll

get that off and then by the Friday, so we started

getting sick on the Saturday and then by the Friday still wasn't

well so took him to Ed and

they wanted him giving him

Panadol and nurofen and every time that

wore off he would be in more discomfort

and they didn't identify what was wrong with

him didn't take any blood at that time either.

So they're just to the euro and Sample.

Testing for a urinary tract infection. I

believe that came back negative that we're going

to release us that night. But every time the Panadol and neurophone wore

off he started crying and being uncomfortable. So I

pushed and they kept him overnight. They released in

first thing Saturday morning and I have a photo of

him. It's not up there but he is

so pale. He should never have been released and

he just looks like a very very sick little

boy over the course of that Saturday. We took him home.

He laid on the couch was horizontal

for the whole day. He wasn't drinking he wasn't

eating my then husband was syringing water

into his mouth just to get some sort of hydration into

him. And as a mom you assume

that he's gonna get better because you've been

told by GPS and nurses he'll be fine. Like he

could be getting better. It's hard to tell in a kid of his

age could be getting worse. He could be getting better. Just say how

you go.

I went to work because I've been that advice that he

could be getting better. Just wait and watch went to work worked

until midnight and I came home and his father

was in bed with him. He would sleep for maybe a

minute, maybe two minutes and then wake up screaming uncomfortable

unhappy.

I let that go on until 2

am and then I went no we're going back to

the hospital talking back to the hospital.

When we got up there one of

the emergency doctors in the Pediatric

ad I work with

her husband and she paid a little bit more attention. I

think to Austin and we noticed that he's right leg was discolored. It

had like a gray kind of a tinge to

it from there. It escalated at

no point was sepsis mentioned.

There was no information that he

was being tested or indication that

it could have been sepsis or anything. Like I had no idea.

What sepsis was he was put on

antibiotics. We were taking up to a ward. He had

a couple of ultrasounds because they

identified a collection of fluid in his hip

and then a collection of Florida around his appendix. I

thought it could be his appendix, but they wanted to

make sure so they did a second ultrasound and then

took him into surgery from there to take his appendix out.

We didn't know what was going

on in surgery and we

were taking up to the critical care unit without being told

what was going on put in this.

broom cupboard I would say

to wait

still not giving any information and then the

doctor came in and said this is going to

be the worst night of your life from there. Not quite

sure what he said kind of tuned here.

Um, and then we were told that he crashed in surgery.

They had pierced his femoral artery trying

to get a central line in and that he was

going to be retrieved by Queensland Children's Hospital.

So went and saw him in the operating theater struck down

to a bed ready for transport. He

yeah horrific absolutely

horrific from there.

I taught him that he had to fight and he wasn't allowed to

leave us.

And he is my little fighter.

He's my little hero.

And yeah, we were taking up to Queensland Children's

Hospital. It was a 42 minute ambulance ride.

I think peak hour Monday morning from God has

uni Hospital up to Brisbane.

And he had another surgery to repair the

femoral artery to do the washer of his

here. And then from there he

still had infection over the course of a week

and he had two for the surgeries after that.

Hey this the last surgery that he had for

his leg wasn't until after Christmas. We were

released just before Christmas. He had to

go back up for an MRI that was done the results.

Weren't given to us. He still had

infection. We had to chase up those results. We had

to go back to the GPA and we were

told to go straight to Gold Coast uni hospital and we were

taken straight back up to Queensland children's hospital where he had more

surgery. He was on antibiotics for six

months through a pig wine.

We had to do daily trips to Gold Coast senior hospital we lived

in Urbana had to do daily trips to Gold Coast Union Hospital,

even though we lived two minutes from being a hospital. So there's anybody

could be cleaned out administered. He

had to have dressing changes

obviously which was traumatic, but

at the end of the day he's here and we

are so very lucky. He has yearly check ups with

the orthopedic team up at Queensland Children's Hospital.

And yeah, that's pretty much it looking at

him. You would never know that he had been sick.

He has his leg

is like one and a half centimeters difference in

length to the other. So he trips over

everything on again when he's tired.

He's foot drops a little bit, but there

is absolutely no slowing him down. He

goes to school as normal. He does Jujitsu. He

does basketball. He drives me insane. He

is just yeah. He's a typical

little boy.

Thank you Tiffany. I think

you know you actually commented there and a

few different ways the challenges in receiving the information

that you needed to receive and having follow-ups

in in various ways in terms of what you needed and

we're aware that your story with Austin was five

years ago, and we would hope that since that

time that things have improved but just to

give us a bit of a sense initially. Can you kind of speak to what were

the key supports and information that you received at that time?

I believe we had the option of talking

to a social worker at Queensland Children's Hospital meeting my

profession. I haven't had a good very good interactions with

social workers. So yeah, he's father

kind of had those discussions. I wasn't

really interested. But I wanted to talk to doctors one

of the information I needed to know.

What was going on? What caused sepsis what

was it? Um,

I don't remember getting any material and the

only time that sepsis was really mentioned was

when we were told that

he was being retrieved in that Critical Care Unit and absolutely

acquainted Children's Hospital. There was

no explanation and everything that we're seeing in hospitals now,

so the

Posters up on the wall in Ed. None

of that was there like everything has

happened since Austin got

so many kids got sick and it's just from there. So

there was there was nothing like me

was in hospital at the same time. I didn't

know that. Yeah. Yeah after the focus

groups and we put two and two

together and what we both in I see at the

same time.

We could have been having discussions and had that support

but we we didn't know yeah, there

wasn't that connection made between the two of you. Yeah. Yeah,

is are there things

that you've noticed then that you know, and for people to now be aware

of in terms of you know, we've sort of spoken a bit about some of them today, but

just to kind of highlight those to the clinicians that are online information

sources. Now that parents could be

directed to and things that you would suggest, you know, if they're meeting

with parents or they're talking with parents tell them about these things so they can find

out about sepsis and what supports are out there. Yeah. Basically

the journey in three steps is series that is crucial and

I mentioned in the meeting earlier that one of

my old acquaintances one of her friends has

been diagnosis sets us and she

wanted to learn some more about it and she stumbled across the journey through

sepsis series and no idea

that my son had been so sick. So that is

crucial. That would have been beneficial so get

an understanding of

What could potentially happen to Austin? I didn't know about potentially

amputation or anything that

none of that was discussed with.

From my memory and if parents

don't want to talk about it give them

something to to read in their own time. Like

you said, we don't sleep much we see up

high worrying about a child. We have time to

read we have time to research and we

will read it in our own time just because we don't want to we can't

handle that human interaction and

Um, but yeah, we may be able to read it a little

bit of downtime. Yep. Yep. Is that

one of the reasons you wanted to be in the journey through steps

this video series to kind of have that, you know something that was available to

parents that they could go and access themselves. Absolutely. I

want to I want to give other parents what I

didn't have

So I didn't.

Put family and friends are

supportive. That's great. I've got no idea what it's like even

now talking to people. They don't know what it's

like it's not just a normal cold or flu

or yeah, your kids got a broken

leg or has had surgery. It's you your

child is nearly died or has passed away

from something. That is so preventable. And yeah, it's

still happening. It's just yeah, it's not

right. I want to be involved because it

shouldn't happen to anyone let alone kids.

Yeah.

Absolutely. Yeah, that's what we're all working

out. Aren't we a little bit a little bit? Yeah.

so I wonder could you speak

a little bit because

Without peer mental program as one of our lovely mentors. Could

you speak a little bit about that in terms of why you wanted

to be a mentor and how you think that program May Provide

support to families?

I think the main reason that I wanted to be involved

is for the reason that I just said before like family and

friends. They try and understand they don't have that

understanding because I haven't been in that

position as somebody who is a

parent of a child who is nearly died from sepsis

and he's still

Recovering as such and still has the checkups. Hmm.

I can give somebody

a bit of insight as to

what it's like on the other side of how it

can turn out. I'm one of the lucky ones my child

is still with me and knowing how many parents there

are out there that their children answer

with them. There is a bit of guilt attached but

I am so very lucky and so

blessed that I still have my child and if I can help a

family in any way, but I just giving them an

e so they can voice how they're

feeling what they're going through what they need that giving

them advice, but just being there as

somebody who has been through it.

Think that would mean the world to them.

Absolutely. Yeah, and we do have the benefit with the peer

mental program. I guess that because it is all via messaging and

phone calls or you know video chat or whatever that it's

not like you have to be in the same location as a person that you might be providing support

to so.

Yeah, exactly, right? Yes.

Um could I wonder you've also been involved in

various working groups you talked about being involved in the focus group.

So the research and you've also been involved in our working group

for World types of stay coming up and you've done that

a couple years now, could you talk to us about

why it's important for you to be involved in those things those aspects of

our program.

I think it's my therapy. I like

it. I think.

See after everything else went through.

I'm still emotionally triggered going through

pediatric emergency even in my line of

work. I was triggered the other night because I wasn't mentally or emotionally

prepared to go in there and went through

a door and went up.

Oh, that's a cute crying. And yeah, it all

went down so.

Yeah, what was like, what was it?

What was the question why you want to be involved in the working groups and

the focus groups? So yes, I

can. It's my it is my therapy

but I didn't have counseling or anything like that. It's yeah,

so something positive comes from

something so negative.

That's yeah if I can help

a family member that's going through

it or has been through it then. Yeah,

it's worthwhile. Hmm. Yeah. Yeah

for sure you commented

before that.

you know, yes, obviously that you know that you feel incredibly grateful

that you have Austin, but you know, you you feel for the

families, obviously whose children have passed away, but I guess I want to

make the comment that

And obviously it's incredibly tragic for those who've lost

whose children have lost their lives for those

like yourself in terms of dealing with this. It doesn't go

away. Does it like it's it's something that you're continuing to

deal with all the time. And I I wonder if you can just

kind of comment on that in terms of what clinicians need

to be aware of because if families are still dealing

with this, two three, four five for you,

you know, 10 years probably 15 years down the track what

a clinicians need to be aware of when they're supporting those families out

there in the community whose child was diagnosed receptors,

you know, potentially five years ago.

So every time Austin has a temperature, I think

the worst. Yeah every time he bumps

he said because he had surgery on his head. He's a

medically challenged child. Um, he's had

surgery on his head every time he has

a sniffle every time he gets asthma a

temperature anything is wrong with him. I

am on alert and

I think the worst so I think

clinicians you need to be aware that

Parent of a kid who has had sepsis is going

to freak out and jump at Shadows for the

rest of their lives. It's five years down the

track.

It doesn't get any easier. Yeah. Yeah, I

think that's beautifully said just

to be aware because it doesn't it doesn't go away doesn't you're obviously

going to have those same reactions and you know, like you

said there's often the the stories like you had where there

was the repeated going to gp's and

hospitals and stuff. So there's that real sort of uncertainty about

being heard and listen to and the importance

of doing that for families irrespective of how far down

the track you are with.

If your child, yeah, like the

second time I was taking him to hospital.

on the way

up because I've been told he could be

getting better. Hmm, and if

I had a way it wouldn't be here.

So I think yeah crucial for

parents scenario to take

him to not wait. Yes for clinicians

to know to listen to parents.

Yeah, yeah, they know they know their

kids the best they know when they're not right. Just have

a listen to the parents. Yeah, yeah.

Well said it's something that we've tried to include in

terms of the development of our clinical pathways in you know,

that there's aspects within those Pathways in terms of how

you're actually checking in with parents. And what are the

parents saying about their child symptoms, you know, obviously you're doing all the screening and

test that you need to do, but at the same time a key

element of the assessment needs to be what is the parent thinking what is

what is the parent saying to in terms of how well their child is? Yeah.

Yes. Um, so

So many amazing things that you've shared with us today, but I wonder if we

can finish up and then we'll certainly take questions from

people if there's any questions from those who are watching what would

be your key message to clinicians viewing this webinar

today of what they need to be aware of when they're working with

families with a child diagnosed receptors.

Initially, like I just said listen to parents. Mm-hmm consider

what they're saying and really listen

to the symptoms what we may not we're not

medical professionals, but we know our child and we

know

Gut feeling mother's instinct. Whatever

it is. We know when there is

something seriously wrong, even though now I

jump it Shadows.

I still know when he is really not

well, um, so ongoing

treatment like just

for families who have been affected by

sepsis just be aware that yeah, we do trumpet Shadows

not to diminish how

we're feeling if we feel

the need to take our child to emergency because we're

worried about them. There's obviously background and

there's a reason we could be

scarred from our cute having Sexes. Yeah,

I think yeah, just listen and

have a bit of consideration.

So what a family has been through and that's

for sure.

Thank you. Tiffany. Meg says a couple more slides and

then we'll go to questions. We we know very much

within our program that the words from our

families words from people like Jenny are going to

mean far more and resonate far more and have far more

weight than anything than Megan and I can say

or anyone else in our program can say and I am so incredibly

grateful to you Jenny for sharing that with us today and as and

for your role that you play in our program every day.

I'm going to try gather myself to continue to finish

we ask you to consider three actions regarding how you can

understand and meet the needs of families impacted by pediatric sepsis

like Jenny.

Educate yourself further on the resources that we've discussed today either

through our website or the case study available on

the commission website as we also mentioned earlier, please feel

free to reach out to Megan or myself. Should you

wish to discuss any aspects of the family support structure in

more detail or if you have any questions

Please inform colleagues and families that you work with of the resources

that have been developed and that are available to use and most

importantly connect families you're working with with these supports.

We do a very best to make them as readily available as

possible. But unless families are told about them. They simply can't

access these supports for themselves.

As we hope we've demonstrated today our families that

we work with within the Queensland pediatric sepsis program are at

the center of all that we do we'd like to finish today with the most

sincere. Thank you to each and every family impacted by pediatric sepsis

who've shown bravery and vulnerability in

guiding us to create a program that we know will change the paths

of Future Families for the better. Thank you.

We do have some time now to take some questions

and I think that Kate is

going to help us with that.

Um, okay. We do have a few questions that have come through. Thanks. If there's

any more on the chat, please pop them in and otherwise, we've had a

few that have been submitted earlier one. That's come through on the

chat. And this one's for you Jenny and it's from Cassandra and she's wondering

if George was unwell or had any symptoms on the

day before you guys went to the emergency

department. Yeah. So George wasn't

a great eater. So we've given him a new yogurt

and he started vomiting it about 6:30 the night

before we called a home doctor out because George

because he had

Down syndrome had floppy Airways. So he

had larynga Malaysia bronchial Malaysia and

tracheal Malaysia. So because he'd been vomiting.

I thought I'll call the home doctor out just to make sure that nothing had

sounded with funny there and the home

doctor said everything sounded really clear. He had no temperatures no signs

of anything else before that and then at

about 12:30, I think about 9:30, so he

vomited again, but I thought it was still related.

To the yogurts issue thought

maybe it's just upsetting because we're trying to think new and about

12:30. That's when he started to vomit

a bit more again. And that's what I

sort of realized that maybe this wasn't just the yogurt and

then I think by about 3:30 was the first time her noticed

any signs of a temperature.

and by

I think we so he ended up falling back

asleep again at about 4:30. And then we got ourselves ready eight o'clock

when he wake up again and went straight to the hospital because he was

still vomiting it again then and knowing that because he

wasn't a great eater. He would lose fluids very

quickly. I just thought was best to for us to

go up there. They did an x-ray of George's chest as well just to

make sure nothing had actually influenced his lungs there.

So they all did that they did that

pretty quickly actually when we got there, but there

were no other no other nothing else that

was before then at all.

Thanks, Jenny. And this other question is

probably also for you and also Megan and Alana as

well from your experience with our other families. So what

are the main concerns that families face and the

support Pathways that are available to them. I suppose we've spoken quite a

bit about that today, but maybe if we could reiterate, you know, those main concerns

and what Pathways we now have available to help families through

that.

Jenny would you like to start with the main concerns you

had around I guess yeah, really just sort

of understanding sepsis and your experience with sepsis

and in a letter and I can follow

Yeah, absolutely. So for me personally, it was

the lack of information. There was a very minimal

information to begin with which is

one of the reasons why I've stayed on this journey because

I want the world to know that sepsis

is there I want everyone to know it's there one,

you know, I don't want to I don't want fear mongering to

be the part of the root of actually sharing the

information. I just want

to know that there's a sound base and a knowledge base.

That's there that's available on all types of platforms that you

can reach out to that really genuinely wasn't there

at that time for us at all and just

knowing that there there are definitely

core things. You can reach out to there are organizations just

like this incredible group. You can reach out to who include

families like myself as well as other mums

and dads and it's remember it's not just mums as well. It's incredibly

important that people know that there are dads out there too

who who have walked a different

path from us. We have different feelings. We associate

our feelings very differently. So it's important for them to know they're our dads

out there too who walk this path as well who they

can also reach out to

Thanks so much Jenny. And so yeah, I think just following

on from what Jenny said there. We are

Lennar and I would say that probably the

you know key needs and experiences of families kind of fall under

two Umbrellas of Education needs and support needs.

And so those education needs will both education and

support kind of throughout that entirety of their health Journey from

you know, just even having this awareness of sepsis as Jenny

talked about and then once their child is in

hospital and potentially being diagnosed with sepsis that education around it

what to expect and and leaving

hospital the ongoing impacts of sepsis and in

the support throughout that entirety of the journey as well because as

we talked about families in the research, identified

experiencing extreme isolation of

their child having this condition that one they had had

very limited knowledge of and that they their formal

supports had very limited knowledge of so people didn't know how to best support

them. And then our bereaved parents talked about this sort

of double isolation that they experienced where bereaved parents

in general feel quite isolated from their community that

to be bereaved by a condition that is is

not overly known talked about

Out kind of adds another layer to that. And so that's where we

put a lot of effort into ensuring that and

direct feedback from our families as well that things like

the peer mentor program have that there

is a peer mental program for families whose children survive sepsis and

then a special peer mentor program for parents who are bereaved

by sepsis because they do have different experiences and different needs.

Thanks, Megan and probably Segways into the next question which

we have spoken about but are there any handouts for parents on sepsis?

Yes, there is and I will pop the link to those

in our chat along within a valuation survey that

will pop up in a moment too. So I'm trying to multitask. Well, I'm

asking these questions and so probably again

for Megan Allah and Jenny a question

would be who is best placed to

talk with families about what support is available to them.

I think that what we're trying to encourage people

to understand is that where we're building this toolkit.

If you like it comes from our website and

comes from the various resources that we're developed and we're trying

to develop them in a multimodal way. So that people can access them readily

online or they can access printer copies or

various means for doing that. But ultimately every

person out there working in every Health Service can share

with families what it is. What sepsis means help

them to understand what sepsis means and help them to access

the right resources and supports for them,

whether they're a family who's dealing with a child who is survived

sepsis or a family who will bereaved as a result of sepsis. So

there's certainly that that two-step process to

it and why we focus on sharing education such as

this today that we're just also pleased that you've attended because

it starts with clinicians yourself understanding what it

is that's out there for families. What can we offer them and then passing

those messages on to families so you can

certainly link them in directly with the resources that we

have.

Our website you can provide them with the links to register for

our family support network. You can direct them to the videos and

watch them with them talk them through with them or

guide them to actually access them themselves on their phone. They're

very easily accessible on the phone or you can

register them for the peer mental program encourage them

to register all of those means or you can

link them in directly with us and we in the

not too distant future. We'll have a family referral form

available on quips to you'll be able to access that

form and directly refer families through to our family support

network and for contact with us as well all the

families that we work with still have their primary clinicians their

primary social workers. They have a social worker in their hospital or Health Service,

but Megan and I are there in terms of providing that

additional information and resourcing in relation to our

particular program.

Thanks Alana. We might have square time for one or two more questions.

So if there's any from the chat, please pop them in now. Otherwise, I've got

a couple sitting here and I suppose leading

on from the resource question is the resources that we've discussed. Are

they only beneficials for family only beneficial

for families or can they be used to tour wide AUD?

Ience, most definitely can be used

for a wider audience. And so I think the journeying through sepsis videos

are a perfect example of that that you know

while there's it's obvious the benefit that they can have for

families in providing education and support around what sets

of Sears and what the health Journey for families whose

child has sepsis can look like they are

an incredible resource for clinicians as well to give clinicians

some insight into what is this burden of

sepsis on families. What is this really lived experience?

Like as a learner said in the

presentation we put a lot of emphasis on ensuring that

they're you know, genuine lived experiences really represented in

these videos. We haven't shied away from the the difficult

parts of it. So it's really important for

clinicians to to understand that and can be

a really good sort of talking point for clinicians

and families to watch the videos together and kind of

go Okay, so

To having seen that and having learned that what is this now going

to mean for my child and you know can just be

a good conversation starter.

Thanks, Megan. And thanks also for the comment in the

chat as well about the the pathway to on the

current version of the pathway. We do have immunocompromised as

one of our initial screening factors, but

we are currently going through a an iterative

redesign of the pathway. Like we always do when you

information comes up when we get feedback about how it's working but going

through that at the moment by combining the emergency department

Rule and remote impatient pathway into one

and then adding some management guidelines as

well onto that in line with the news clinical care

standards, but as part of that we're looking again at the

initial screening criteria, so we'll make

sure we'll take that comment back to our clinical team. Thank you very much. And then

one final question we've got here is about what

changes do you think we could Implement to help

decrease the presentations of sepsis within Rural

and remote or Aboriginal and Torres Strait Islander communities.

The circuit did you say into the decreasing the

presentation rate? Yeah, I think so, or maybe maybe we

could flip that question and be more about English the awareness of

sepsis and awareness of sepsis science and symptoms. So people can access

care early. Yeah. Yeah because I guess this is

what we find and we've certainly had many conversations about this

in terms of the challenges potentially for those in

rural areas or those from Aboriginal Torres Strait

Islander backgrounds in particular in terms of accessing Health Services in

a timely manner and you know, as we briefly spoke about

obviously time is of the essence in relation to sepsis and diagnosis

and treatment of sepsis those key questions

that we linked on that slide and certainly if

you want to have another look at those because I think there it'd be

useful almost to have a conversation within your service and where very keen

to engage with services to have these conversations as well

and to link you in with our Aboriginal and Torres Strait Islander project

officer Karen, but having a think about that

quite specifically in terms of software working with

clients in a particular way, how do we then extend that in

a different way?

We support Aboriginal Torres Strait Islander families

who may not choose to pick up that brochure or

may not choose to come immediately to the Health Service

and we know for example, there's various reasons why families

of Aboriginal tourists are under descent may not Access Health

Services ranging from lack of trust in the

Health Service luck of finances to actually get themselves into the Health

Service. So, you know kind of thinking quite creatively even

in that particular instance of how do

we in reach to those people within their local community so that

there's a greater awareness and understanding of what sets this means and

that's some of the work that we're starting to do but also work that

needs to be done on the ground through every service across

the Queensland. So we're very

happy for further conversations. There's a lot in that that we can barely cover

in a couple of minutes now, but really happy to have those further conversations

from those key points that we we mentioned on

that slide.

Thanks letter and very quickly Kylie. Yes,

and we are part of the PCC and we review it where I'm

an automatic part of the review Team every

couple of years. So all of our clinicians review the specific

Pediatrics that specific information that's in the PCC and yeah,

which is great.

I do have a couple that work resubmitted though.

Which were two?

What?

Ource are available on the Sunshine Coast. Can I hand back to you

Megs to answer that question?

Yeah sure thing. So I guess what's available on

the Sunshine Coast is what's available across Queensland as

a whole so all of our resources that we

have available on our website, you know,

the real tangible items like such as the handouts that

are can be printed by ourselves or contact with us and

we can send them out to you to have in your family rooms

or tea rooms or whatever would be most accessible for

families and then all of the online

resources such as the journeying through sepsis videos,

you can easily access information on our

peer mentor program everything that we've talked about

today is accessible across Queensland and as we've mentioned

Australia, really so yeah head

to the website to get more information about that.

Thanks manx. Another question we have received is who would be

best place to talk to families about the support that is available

a learner. Can you answer that one?

I would absolutely say that everyone is

best place to talk to families about the support that's available.

The more people that are talking about the support.

The more people are talking about the fact that there is key information out

there about sepsis. There are resources. There's supports

available the more conversations we have I

think the better off we are we we know

that families may take in little bits of information particularly when

their child's critically unwell, and so one person

saying something to them they might necessarily actually

receive that all here that so the more people that are talking

about the better. It doesn't have to be support that

comes only from the person's individual social worker because

you know as Tiffany mentioned, some people aren't really Keen

up.

This which is fine. But you

know, there's all of this stuff that's available to

anyone can be talking to families about it. And I'd really strongly because

we hear this from clinicians that they worry that

it can be too soon to share information about the

sepsis program and too soon to share the resources so

that if families are in those really acute stages, can I

ask it a comment on that Tiffany in terms of whether you think it might be too

soon?

Never Too Soon sooner the better give him a handout given

the information when they want to consider it they will if they've got

the information they don't have to ask for it beautiful because

you talked about as well these sort of said, you know, people didn't

even talk to you about the fact that there might be amputations or you know,

but we have people sometimes kind of go. Oh, we don't want parents to

think that there might be amputations when that not might not be what's

going to happen. But I feel like as a parent your mind goes there anyway

to the worst case scenario every parent is

different given my profession. I'm a bit of a harder us. I want

to know all of the information. So tell me

worst case scenario and yeah, we're

Yep.

But have what I can only

imagine how I would have reacted if amputation

had been sprung on me. Mmm of

doctors are talking to me about amputating and

yeah not

tell me the information. Yeah. Yeah,

you have to be a little

bit you have to judge the person that you're consider what

sort of person they are. Like I said, I'm harder. So I

want to know all the information. He's father

may have been completely different. He was happy

to talk to social workers. I am not happy to talk to social

workers now I am but then he was

doing the touchy feely stuff. I want the information. Yeah, everybody's

different. Yeah. Absolutely. Yeah

lovely. Thank you.

And one more question we have here is are the resources. We

have only beneficial for families

or can everyone look at them.

Yeah, most definitely they are pitched at

everybody. So as we've kind of talked about particularly, like for

example with the journey in three sepsis videos while there

is incredible information in there for families about what that Health

Journey could look like for them and their child. There are so

much information in there for clinicians regardless of

what your background and knowledge of sepsis is in terms

of educating you generally on what steps this is but primarily

around educating you on what what are these

experiences of families whose child have sepsis like

and what is this burden of sepsis that we keep talking about for families?

It's only going to benefit you to know that

information to them be able to actually meet the unique support

needs that this group of families experience.

Thank you very much. That's all the questions that we do have. Nothing else

has come through on the chat. So before everyone does go

we do have an evaluation survey, which would be fantastic. If

you could fill out on your feedback obviously is very

valuable to us and it also gives you an

opportunity to let us know what you might need from us. So I will pop

the link in here for you.

To fill out if that's okay and I'll

hand back over to you later to wrap up.

Here and I also just wanted to mention because we did have some questions

that was submitted to us prior to the webinar. Today. We'd asked

if you had any questions some of

those we haven't answered today because they are outside of the the

core business for Megan and I in there were

more kind of very clinically focused questions in terms of use of the pathway and

other things in relation to antibiotics, but we

have if you're not aware with this is part of a webinar series, then

we do have other previous series

that I people are they still able to access those Sarah

the previous they will be

on our website soon. They are not up yet, but

I can certainly send anyone a link. So we did it

the first session on the clinical Care standard that was released in

June. The second session was data and

metrics about how we capture data around Pediatric Services

and what we're going to do with that. So if

anyone is interested happy to just shoot me an email

on the email that I've put in the chat and I can get a

link to you for those.

Awesome. Thank you so much. And obviously we are

continuing to run the monthly. So there's another webinar coming up

in October that I'm sure you'll receive information about as it

approaches. So thank you all again for

attending today and for your contributions, but

mostly I want to thank Tiffany and finish with

thank you Tiffany because we really as Megan said, you know, we know it's not easy to

share your story as much as you want to be involved in our

program and contributing and continuing to raise awareness that

we know that sharing your stories not an easy thing

to do. And so we really really appreciate that you take the time

to do that in order to then share with others and help to inform

them and educate them more so that they can help more families

in the future.

I'm I want to thank everybody so much for coming today a

massive. Shout out to Megan Alana, and

especially you Jenny. We really greatly appreciate the time

that you've taken today, and we hope you've all taken something

away. Don't forget that there's the evaluation survey in

the chat, please but really loved your feedback. We'd love

to know what other sessions you would like as well. And so

thank you very much for your time today and have a great afternoon.