May 28, 2025 • 32 mins
In this episode we are discussing the importance of provider-family partnerships for people with complex needs.
Cheryl Jameson is our guest and she was in conversation with Emily Webb, host of this podcast, at the Complex Needs Conference in late March for the lived experience stream.
A mental health support worker of many years, Cheryl found herself on the other side of systems when her eldest child Josh was 16 and developed psychosis. He was diagnosed with schizophrenia, which was drug-resistant for many years.
We discover how her family has navigated systems and worked with providers to ensure Josh has the support he needs and wants.
Josh gave his consent for his mum to speak to us about their journey so far.
ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.
Helplines (Australia):
Lifeline 13 11 14
QLIFE 1800 184 527
13 YARN 13 92 76
Suicide Callback Service 1300 659 467
ermha365 acknowledges that our work in the community takes place on the Traditional Lands of many Aboriginal and Torres Strait Islander Peoples and therefore respectfully recognise their Elders, past and present, and the ongoing Custodianship of the Land and Water by all Members of these Communities.
We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Get Real is recorded on the unceded lands of the Boon
, Wurrung and Wurundjeri peoplesof the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture and wecelebrate their enduring
(00:21):
connections to country.
Knowledge and stories celebratetheir enduring connections to
country knowledge and stories.
Speaker 2 (00:28):
Welcome to Get Real talking.
Mental health and disabilitybrought to you by the team at
Burma 365.
Speaker 3 (00:34):
Join our hosts, Emily Webb and Corenza Louis-Smith,
as we have frank and fearlessconversations with special
guests about all things mentalhealth and complexity with
special guests about all thingsmental health and complexity.
Speaker 4 (00:52):
We recognise people with lived experience of mental
ill health and disability, aswell as their families and
carers.
We recognise their strength,courage and unique perspective
as a vital contribution to thispodcast so we can learn, grow
and achieve better outcomestogether.
Speaker 5 (01:12):
Welcome to Get Real talking mental health and
disability.
I'm Emily Webb.
In this episode we arediscussing the importance of
provider family partnerships forpeople with complex needs.
Cheryl Jamieson is our guestand she was in conversation with
me at the Complex NeedsConference back in late March
(01:34):
for the lived experience streamon this very topic.
A mental health support workerof many years, cheryl found
herself on the other side ofsystems when her eldest child,
josh, was 16 and developedpsychosis.
He was diagnosed withschizophrenia, which was drug
resistant for many years.
For this conversation, wediscover how her family has
(01:57):
navigated systems and workedwith providers to ensure Josh
has the support he needs andwants, and Josh gave his consent
for his mum to speak to usabout their journey so far.
Cheryl, it's great to be withyou at the Complex Needs
Conference and sharing yourexperience.
So, just to give people thebackground, can you tell us
(02:21):
about why you know so much aboutworking with care teams and
what happened with your familyand your son, josh?
Speaker 3 (02:28):
Thanks so much, emily .
It's just lovely to be here andI'd also like to acknowledge
anybody listening to this withtheir own lived and living
experience too.
So my husband and myself wereboth working mental health at
the time when Josh, who's theeldest of our four children,
became very unwell very quickly.
(02:48):
He was 16 at the time andbecame very unwell with
psychosis which came on verysuddenly and, honestly, didn't
resolve in any way for five tosix years.
It was initially a firstepisode.
So it's psychosis which didn'tresolve which then became
schizophrenia which then turnedinto a treatment-resistant
(03:10):
schizophrenia.
So during that time he had norespite from symptoms.
We tried lots of differentmedications and while he was
getting side effects from all ofthose, he wasn't getting any
break from his symptoms.
He was tormented and exhaustedand it was honestly the hardest
thing that we have been through.
I'm really happy to be able tosay now that Josh started
(03:33):
clozapine just after his 21stbirthday and that was
life-changing and in so manyways he has recovered and come
back.
He's studying, he's working nowand he has joy and a full and a
meaningful life.
Speaker 5 (03:47):
So, cheryl, you mentioned that you are a mental
health professional.
You're working in mental health.
When Josh became unwell.
What was it like being on theother side, where you were
seeking help and treatment forJosh?
Speaker 3 (04:01):
So in some ways, having some knowledge was an
absolute blessing that when Joshbecame unwell, we were able to
really see that quickly andrealise that he needed help.
I had some amazing supportivecolleagues and clinical
colleagues that really just wereable to point me in the right
direction and get that help.
But in saying that, it's alsothe hardest thing that anybody
can ever go through to watchthis happen to someone they love
(04:24):
.
And it was very public for mein some ways.
It was, um, a little bit likethe emperor's new clothes that
my personal and my professionalwork just collided in the
respect that.
Well, when Josh had his firstadmission, I had clients on the
ward there too.
So I remember being in a familymeeting with him where, um, I
was trying to listen to theinformation and find out where
(04:45):
we're up to, and I had clientsknocking on the door yelling out
Cheryl, cheryl, get me out, getme out.
And trying to peek in the doorand trying to not fall apart on
the ward as I was really quiteemotional too.
But also they say not to airyour dirty laundry in public,
but literally this one night Ijust as you do in the middle of
winter in Melbourne done a bitof a hand wash of all my bras
(05:06):
and everything and I had thosedrying by the fire and we had to
call the cat team.
Josh was really, really unwell.
I just went into panic mode anddidn't honestly think until we
were all sitting in the room andhe was being assessed and I was
thinking the guys that I workwith are in here and I've got
all my wet bras drying in frontof them.
I also had a doctor that I'dworked with for a very long time
.
Say to me, what have you done?
(05:27):
What have you done to him tomake him like this?
So I think, as a mental healthworker, it was honestly holding
up a mirror to my practice aswell, because, honestly, I saw
things on both sides so clearly.
Speaker 5 (05:40):
We're talking about what is helpful and how
important it is to workcollaboratively with the support
team for your loved one, foryour family member.
Tell us a bit about thatexperience, about actually
finding the right team, thechallenges, and I guess you know
what you found really helpful.
Speaker 3 (06:01):
I think at the end of the day, it's having clear
communication, just clearcommunication and really not
giving up.
For me, when NDIS came in, itwas very, very new.
Josh's assessment was at thevery, very start of the rollout
in Victoria and it wasn't aready workforce.
So it wasn't a workforce thatunderstood the complex needs of
(06:23):
mental health.
And I actually look back on ourfirst assessment now and think
it was just so ludicrous.
The young girl that wasassessing us had come from
working in a bank the day beforeand she honestly had no idea
what complex schizophrenia couldlook like, what Josh might need
, and also the support peoplethat we had in the room.
(06:43):
We brought along one of Josh'ssupport workers just as a bit of
moral support.
He actually asked the assessorout in the middle of our
assessment.
So that was sort of just themind exploding process it was
for us With NDIS.
It really made me think, okay,what we want for our son is to
have a full and meaningful lifethat builds his independence,
(07:06):
that it's a life that he wantswhere there's gaps, he's
supported in those we don't have, a life that he loves and is
directed by him.
But there wasn't at that time aworkforce to deliver that.
So I wrote Josh's firstrecovery plan, as directed by
him, by really sitting downsaying what do we want this to
look like?
It was about future planning aswell, and it was about how do
(07:30):
we enable him to keep hisindependence not really
pathologize our relationship,because there was a real push
even from day one that we wouldcase, manage him or support,
coordinate him.
But for me it was reallyimportant that this process was
led by Josh for Josh anddirected by him, not directed by
us.
(07:52):
The other thing I would reallywant to say is keep ringing.
Sometimes communication can bereally really poor, or sometimes
communication between careteams or medical staff can be
not in layman's terms, so it canbe a quick conversation that
you really don't understand.
So it can be how to just makesure that we do understand.
(08:15):
So just keep asking.
If support coordinators aren'tringing you back, keep ringing.
Keep fighting, you will getthere.
And if the care team isn'tright, keep looking.
Change care teams, keepfighting, you will get there.
And if the care team isn'tright, keep looking, change care
teams, keep looking.
We're so lucky now that we dohave some really experienced
mental health workers workingwith Josh and the difference in
him has been phenomenal.
Speaker 5 (08:36):
You just mentioned that.
You know, sometimesconversations with people on the
phone, with professionals andthe care teams it's hard to
understand what they're saying.
What are some of the thingsthat you would like the people
who attended the Complex NeedsConference, the people listening
to this, who work in this field, who are part of support teams
(08:56):
for people with complexpsychosocial disability, complex
needs what do you want them toknow from your perspective as a
family member of someone who'sgot, you know, a serious mental
health condition and there's alot of barriers to them being
able to live the life they want.
Speaker 3 (09:19):
I think number one it's to know that recovery is
always possible.
Ndis gives us really it's onesystem to fit all, so trying to
find that individual pathway inthere is really really hard.
As workers, we need to beflexible.
We need to be able to thinkoutside of the box.
Something I'd really like tohighlight is that at times, as
(09:43):
workers, we don't rely enough onfamilies and carers to be our
allies.
We need to advocate family andfriends and carers are your
allies.
They know so much informationabout the consumer because they
know them best.
They spend most time with them,so they can just be so much
assistance to you.
Speaker 5 (10:03):
And I know we've spoken before, but one
particularly hard aspect of thejourney you've had with Josh and
for him is getting themedication right.
Do you want to talk a littlebit about that journey with
getting that right andadvocating and what you had to
come up against?
Speaker 3 (10:21):
So originally we were in the youth mental health
system and then that turned intothe adult mental health system.
I think something that stilltakes my breath away can be the
stigma in mental health,particularly with young people.
Something we came up againstwith just even families and
friends was people's opinionsthat they felt that we needed to
(10:42):
know.
We needed to know what theythought of everything that we
were doing.
I think with mental health, thehardest thing in this space,
when someone is really unwell,is there's no guideline to how
long it's going to take torecover.
There's no guidelines or surefit medication such as
antibiotics to fight infection.
It's finding the right one thatfits.
(11:02):
Josh was really sensitive tomedications and he was really
treatment resistant.
So we had five, nearly sixyears where in so many ways he
was lost.
He was so tormented by hissymptoms, by auditory and
tactile hallucinations that werehappening for him constantly,
(11:22):
that he was just tormented.
He really shut down.
When he did manage to sleep, hewould often have psychotic
nightmares so he would wake upscreaming.
So we felt in so many ways thathe was lost and we weren't sure
if we were going to get himback.
The other thing is he did workso hard in his recovery.
He tried every medication.
(11:43):
He did everything suggested tohim and just never gave up on
that.
But unfortunately he would haveall the side effects from
medications but nothing wouldtouch the side of his symptoms.
As this went on, I startedthinking more and more about
whether clozapine would besomething that we could possibly
try, especially when his careteam started talking about well,
(12:06):
maybe we should go down theavenue of trying ECT.
That that might be something.
There's a lot of concern aboutsaying someone's so young and
clozapine, when it's such amedication with so many known
side effects.
There's also a lot of protocols, so we had to have very
significant trials of othermedications.
(12:28):
That went on for many months toto just make sure we were doing
the right thing.
But during this time, this wasalso time that Josh lost, where
he just stayed in that reallyunwell space, suffering.
So it was really trying tobalance all of that.
And then when we did trial,start the trial with clozapine,
it had to be very, very slowbecause it does have a lot of
(12:50):
side effects and it had to hadto be done in hospital and then
it had to be done in acontinuing care unit.
It's certainly not somethingthat any parent or care team
would do lightly, but for him itwas our miracle in lots of ways
.
So for five years for us it wasreally um, we felt that we when
(13:10):
I say that I felt that we'd lostJosh.
He was so sort of blunted ineffect, he couldn't smile, he
couldn't react, he lost hisreactivity.
This is a boy that had alwaysbeen really cheeky, a real
larrikin.
He'd light up the room with hissense of humour and he was
honestly just existing.
Clozapine has given him thatback when I say he studies now
(13:32):
and he's got a job that he loves, he's got this life.
He's got that reactivity andjoy back in his life and we're
really grateful for that.
But I think the role of carersin mental health is that we
never give up advocating andfighting and pushing, and this
doesn't have to be done in anabrasive way, but it's sometimes
(13:53):
it feels like you are bangingyour head up against a brick
wall and you just have to keepgoing.
And we were told many times tojust accept that.
Maybe this is baseline for Josh.
But I knew that this, this wasnot a life that Josh wanted and
I really don't think we wouldhave kept him here if we hadn't
have kept pushing.
Speaker 5 (14:10):
So, cheryl, I guess for people listening who may not
be aware of what clozapine is,can you explain a little bit
about that?
Why was it hard to be able toget someone on that?
Speaker 3 (14:24):
Well, clozapine is an antipsychotic medication that
does have lots of side effectson the body.
It does require compliance bythe person on it because it's
monthly blood tests.
It's a medication that youcan't stop suddenly or you will
end up in hospital.
It can affect the heart so manylong-reaching effects that have
(14:46):
consideration, so at times thatwon't be suitable for the
person that you are looking at.
But also, as a worker, I hadseen some absolute miracles with
clozapine.
I remember years ago lookingafter this young boy and he
always had his head down and hishair in his face and honestly I
couldn't have even told youwhat his face looked like
(15:08):
because, yeah, he would justhave his head down, rocking in
the corner and Clozapine was hisway back and what emerged was
this amazing young man who wascreative in so many ways.
He was a singer, he was anartist and he honestly came back
before our eyes.
And I'd heard of other stories,I'd done lots of research, I'd
(15:28):
worked with a lot of consumersthat Clozapine had worked so
well for.
I think Josh's age was a hugeconsideration, that it's not
something at 21 that would bethe medical professional's
choice, because I think in lotsof ways, where do you go after
that.
That's the thing.
(15:49):
Should we save this for later?
Do we try it now?
And look, there was a lot ofstigma.
When we began the trial I evenhad family members who had some
sort of I think they'd probablydone some doctor googling and
looked at Clozapine and theywere ringing me and just going
ballistic that we could put himat such risk physically and
(16:10):
really not understanding that hehad no quality of life and that
fighting for him to have anylife was where we were at.
And you know we were desperatewhen I touched on a little bit
before.
But I honestly just don't thinkJosh would still be with us if
this hadn't worked, because hewas tormented.
He got no respite from thosesymptoms, it was day and night
(16:33):
for him and he was completelyshutting down and his thoughts
of suicidal ideation wereincreasing.
And, as a parent, nothingprepares you for when your child
doesn't want to be here anymore.
I mean, I don't think anythingprepares you at all for this
journey with your loved one, butcertainly to know that they
don't want to be alive anymoremakes it.
(16:53):
We have to try everything wecan to keep him here and we were
willing to try anything, andthis, of course, was all with
his consent too.
Speaker 5 (17:02):
And clozapine isn't something that you just hand
over and you take it.
Can you talk about the partthat you know you mentioned?
There's specific clozapinenurses.
Can you talk about the role ofthat in Josh's support care team
?
Speaker 3 (17:19):
So when you're on clozapine it's a lot more of an
acute care team that you'll haveinvolved with you.
As I mentioned before, it'sthose monthly blood tests
because depending on the bloodlevels, the dosage of clozapine
changes monthly.
So part of Josh's care team, aswell as being under a
psychiatrist, he's also under aclozapine nurse.
(17:39):
So they're in partnership inthe community.
Speaker 5 (17:44):
Over the years.
So Josh became unwell when hewas 16, he's now 30.
So it's a few years now.
What is his care team lookedlike and what have been some of
the wins?
You know the things that havereally worked.
Speaker 3 (18:01):
We've had some absolute champions over the
years that have gone over andabove.
They've been really flexibleand thought about outside the
box about how do we make thiswork and at one stage that was
organising Friend IS to be withJosh of a Nighttime All
different creative ways.
We started in the youth mentalhealth system Look, they're
(18:23):
amazing for Josh at that timeand then we transitioned into
the adult mental health system.
The wins for us were certainlystarting Clozapine that was
amazing.
The other wins were when Joshwas involved in the youth mental
health system with Headspaceand the Discovery College.
He became really interested inpeer work so he did some study
(18:45):
there and was hosting somesessions and just to see his
confidence and independence growin doing that and just flourish
was amazing.
I think when it's such acuityit's really important that
there's good rapport between theconsumer and the people that
are caring for them, becauseit's got to be honest
(19:07):
conversations and being onclozapine is something that does
really control your life.
It's really hard.
So if Josh wanted to traveloverseas for two months, that
would be really hard to managewith dosages and blood tests and
all those sort of things, andalso taking that amount of
medication into some countriesis a really huge thing.
(19:28):
He's a young man of 30.
He can't drink excessively.
He's really had to adapt and bewilling to give a go.
I think it's one of thosemedications that it can be an
absolute miracle that the personon it's got to be willing to
make a go.
I think it's one of thosemedications that it can be an
absolute miracle, but the personon it's got to be willing to
make the sacrifices to stay onit.
As I said, it's not somethingyou can stop suddenly.
You will become very unwell.
(19:49):
You'll end up in hospital.
Speaker 5 (19:51):
And Josh has gone from being a teenager to now a
man.
How have you found the balancewith working with your son's
support people?
How flexible do you have to be?
How did you have to learn thatyou know you've got to push,
then sometimes you've got toease off and I guess, working
with Josh about that.
Speaker 3 (20:13):
We learned very quickly that care teams would
often just discuss everything infront of us.
So with talking with Josh, wejust came up with a way during
his appointments.
You know, no young man wants totalk about their sex life in
front of their parents or tohave embarrassing questions
asked in front of their parentsand they're not going to answer
(20:34):
honestly, they're not going toanswer openly.
We learned very quickly to sortof step in and step out of
appointments and that'ssomething that's worked really
well for us.
I think too, as Josh'sindependence has grown, our need
for advocacy has lessened.
At this time he's got anamazing care team, but at times
where there's gaps it doesincrease.
(20:56):
I can see it's so dependent onthe rapport that he has with the
people that are working withhim, and if he's happy and if
he's feeling heard, the amountthat he needs to lean on me has
lessened.
But it can be really difficult.
As parents our hope is thatJosh will have a full and
meaningful life that is definedby him, and as a 30-year-old we
(21:19):
want it to be a life ofindependence that he enjoys,
that he's in control of.
But at times he's not heard andthat's when we feel that we
have to advocate.
Sometimes it's been continuallytrying to find a good GP that
understands him.
It's been trying to findworkers that understand that
therapeutic relationship andwhat that can look like, and
(21:42):
they've got to have theknowledge and expertise to do
that.
So I think if you find theright people it's amazing.
But don't give up.
If they're not the right people, keep looking.
Speaker 5 (21:52):
What does Josh's care team look like right now?
Speaker 3 (21:56):
So at the moment Josh's care team.
So there's a consultantpsychiatrist that he sees
monthly, then he sees aregistrar and he sees a
clozapine nurse and a casemanager.
Most of his appointments noware monthly.
He's also got to have bloodtests to go to those
appointments.
But then he has the NDIS sideof things as well.
So he's got the supportcoordinator and he's got two
(22:18):
main workers at the moment thatare with him for a combination
of hours that works for himduring the week and it's the
supports that work for him.
Now, what kind of supports.
Speaker 5 (22:29):
Does Josh have that for Like?
Is it what he feels he needs atthe time, or are there certain
things that do require that?
Mental health support worker?
Speaker 3 (22:39):
At times it might be going to appointments that he's
feeling quite anxious about.
Psychology was a really bigthing when Josh was so unwell.
Psychology wasn't somethingthat was appropriate for so long
, so really that's only beensomething in the last few years
and he can feel quite a lot ofanxiety about going to these
appointments.
So having a support worker takehim and bring him back from
(23:01):
those appointments has beensomething that's really helped
Josh, and also sometimes to theclinic as well.
If, for whatever reason, I'mnot able to attend appointments,
having a support worker go withhim has been huge.
Josh's current support workerhas really worked on some of
Josh's interests.
(23:22):
He's loving bushwalking andgoing to the gym and often
that's what they'll do togetherand that's just been working so
well.
Josh loves it and it's reallyhelping bridge those gaps.
These aren't things he'd do byhimself.
He'd struggle to do by himself.
He doesn't drive, so just beingable to go with someone has
been life-changing for him.
Speaker 5 (23:42):
You've got three other children.
Josh is the eldest.
Can you talk a little bit aboutwhat it's like when you've got
a child that needs so muchattention, understandably, but
you've got other kids?
Speaker 3 (23:55):
So when Josh became unwell so unexpectedly, it
became a tag team between myhusband and myself someone with
him being so acutely unwell, Oneof us was with him 24-7.
We would tag team each other.
So it was about protecting him,protecting our relationship,
(24:16):
which was falling apart at theseams by the stress of this, but
also about protecting our otherchildren and was about and when
I say that it was aboutprotecting their rights to be
kids as well.
I didn't want them to be pseudocarers or have their
relationship with Joshpathologised.
Our dream was that they wouldstay as close as they were and
(24:36):
get through this, one of thethings that we did.
Well, I'm really open with thefact that I've had a huge amount
of counselling and a hugeamount of grief counselling.
When this happens to someonethat you love, there's so many
layers of grief when weespecially around milestones.
I mean.
Something that just comes tomind is Josh's 18th and 21st
(24:57):
birthdays, which are usuallysuch huge celebrations.
He was in hospital for both ofthose, so the celebration was
quite different.
Some of his friends are marriedand saying to have kids now or
buy homes, and Josh's life looksa little bit different.
So I just needed to processthat myself and that was around
my hopes and dreams and sadnessaround that and working out how
(25:21):
do we have resilience to keepgoing on this journey.
But this was also somethingthat was hugely beneficial for
my kids.
So Josh's siblings had a lot ofpsychoeducation when they needed
it.
They had their own counsellingand supports when they needed it
, and we've had some familycounselling that I'm so happy to
report that I honestly think,if anything, it's made us closer
(25:44):
.
The kids all have a greatrelationship.
They spend a lot of timetogether independently with us
and there's lots of laughter.
Their favourite thing is tolaugh at me, so that always
shows a good, healthyrelationship.
They're certainly not scared tomock their mum and dad.
So I think it was about lookingat and the hardest thing I felt
like I was constantly pivotingand look at times I felt like
(26:06):
that hamster on the wheelbecause we both had to try and
work to financially be able tosurvive all of this.
Someone had to make sureeverybody ate.
Someone had to make sure thatthe other kids had a mum and a
dad accessible for them toowhile we were doing this,
Because at the same time theyalso were going through VCE or
school or university.
(26:27):
So it was a lot of pivoting, alot of flexibility and a lot of
tag teaming.
Speaker 5 (26:34):
I guess, as we're wrapping up, what is one or two
things that you really wouldlove people to take away from
this discussion People who workin the sector, professionals as
well as carers this is a really,really valuable conversation,
but, in particular for thepeople who are supporting your
(26:57):
son or supporting other people,what are the main things that
you want them to hear?
Speaker 3 (27:04):
I really feel strongly that recovery is always
possible, and this is definedby the individual.
It doesn't necessarily mean alife that is symptom-free, but
it's about a full, meaningfullife that they love and that
they want to live.
So what I would want to say isyou know, don't stop fighting,
don't give in, for the workersin the room too.
(27:26):
At times, families, friends andcarers aren't welcome in a care
team, but I'd really like toencourage you that they can be
your greatest allies, becausethe expertise that they can
bring about the person and tohelp build relationship about
the people that they know best,they can just be the biggest
asset to you.
(27:46):
Advocacy as a carer, as someonecaring for your loved one, is
the biggest thing that you'llever do.
We do keep finding, we do keeppushing.
Don't give in, don't give up.
I think with the NDIS, we'vegot one system to fit all, but
as workers we need to work outhow can we tailor this to the
(28:06):
individual, to meet their needs,to have their supports covered.
When we look at family andcarers, if we can consider
supporting the supports of ourconsumers, we get best outcome
for everyone.
Speaker 5 (28:20):
Cheryl, I'd like to get your thoughts about.
Psychosocial disability is notunderstood among the public, but
even I've heard people say thateven professionals don't
understand it and they don'tunderstand the impact that it
has on a life, that it isincredibly hard and it presents
(28:41):
a lot of complex barriers.
We've spoken at the ComplexNeeds Conference.
This is all about people whoreally need our help and they're
on the margins.
There's a lot of things goingon.
Why can't the sector and, Iguess, society as a whole?
Why is it so important that wedon't say this is too hard, this
(29:02):
person's too hard, they'rebeyond help?
Speaker 3 (29:05):
The most important thing is that we remember we're
talking about people.
We're talking about someone'slife.
Sometimes that person issomeone they don't know what
they want.
Sometimes they don't havepeople to advocate for them and
often they're not heard.
So it's about finding ways thatwe do make that happen.
We don't have people toadvocate for them and often
they're not heard, so it's aboutfinding ways that we do make
(29:26):
that happen.
We don't give up.
Recovery is possible, as definedby that person.
And I mean, look, I'm someonewho's worked for many years in
mental health and we have had anumber of people that we've
worked with that were deemed toohard or they look really,
really terrible on paper andyou're almost fearful or
dreading meeting them.
And then you meet them andthey're nothing like that
paragraph about them.
It's about not forgetting we'reworking with people and they
(29:49):
deserve to be fought for.
We need to be creative in ourdelivery, we need to be flexible
, we need to be not scared towork outside the box, but I
think our story with Josh is areally good example of not
giving up and not settling.
We're encouraged many times tosettle for the fact that this
half-life he had, was it thatthis was baseline.
(30:10):
It wasn't going to get anybetter than that, but you don't
give up.
You keep trying.
Families and carers, friendskeep trying.
Families and carers, friendskeep advocating.
Speaker 5 (30:18):
Don't give up, were you told that by a few people
that you know, maybe this is asgood as it gets for Josh.
And what was it that made youthink, no, no, this is not going
to happen.
Speaker 3 (30:31):
We were told this many times over the years, where
we tried differentantipsychotics, we tried
different combinations ofmedication and nothing was
making a difference.
We were told that this,honestly, might be it.
So we just needed to acceptthat and move on.
I 100% refused to do this.
(30:52):
I was not going to give up.
I became this person thatresearched and read.
I spoke to every clinician Iknew and every health
professional I knew.
I knew there had to be more andI just refused to give up.
I'm going to fight for my sonto have the life that he
deserves and to fight for him tocome back.
Speaker 5 (31:13):
Cheryl, it's been great talking to you.
You've just got so muchvaluable experience and you
share that as well in your work.
I just want to thank you somuch valuable experience and you
share that as well in your work.
I just want to thank you somuch, and also to Josh, because
he did give permission for youto talk about this.
He's very supportive of that.
Just want to thank you so muchfor sharing your experience.
Have you got any final thoughts?
Speaker 3 (31:32):
I just wanted to say that Josh did give his full
consent and permission for this,and we've actually done
sessions together too for healthprofessionals, from the side of
the consumer and the side ofthe carer.
Speaker 2 (31:46):
You've been listening to Get Real talking mental
health and disability, broughtto you by the team at Irma 365.
Get Real is produced andpresented by Emily Webb, with
Carenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time If you've been
affected by anything discussedin this podcast.
Speaker 5 (32:05):
You can phone Lifeline on 13, 11, 14 or go to
lifelineorgau.
Get Real is recorded on the unceded lands of the Boon
, Wurrung and Wurundjeri peoplesof the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture and wecelebrate their enduring
(00:21):
connections to country.
Knowledge and stories celebratetheir enduring connections to
country knowledge and stories.
Speaker 2 (00:28):
Welcome to Get Real talking.
Mental health and disabilitybrought to you by the team at
Burma 365.
Speaker 3 (00:34):
Join our hosts, Emily Webb and Corenza Louis-Smith,
as we have frank and fearlessconversations with special
guests about all things mentalhealth and complexity with
special guests about all thingsmental health and complexity.
Speaker 4 (00:52):
We recognise people with lived experience of mental
ill health and disability, aswell as their families and
carers.
We recognise their strength,courage and unique perspective
as a vital contribution to thispodcast so we can learn, grow
and achieve better outcomestogether.
Speaker 5 (01:12):
Welcome to Get Real talking mental health and
disability.
I'm Emily Webb.
In this episode we arediscussing the importance of
provider family partnerships forpeople with complex needs.
Cheryl Jamieson is our guestand she was in conversation with
me at the Complex NeedsConference back in late March
(01:34):
for the lived experience streamon this very topic.
A mental health support workerof many years, cheryl found
herself on the other side ofsystems when her eldest child,
josh, was 16 and developedpsychosis.
He was diagnosed withschizophrenia, which was drug
resistant for many years.
For this conversation, wediscover how her family has
(01:57):
navigated systems and workedwith providers to ensure Josh
has the support he needs andwants, and Josh gave his consent
for his mum to speak to usabout their journey so far.
Cheryl, it's great to be withyou at the Complex Needs
Conference and sharing yourexperience.
So, just to give people thebackground, can you tell us
(02:21):
about why you know so much aboutworking with care teams and
what happened with your familyand your son, josh?
Speaker 3 (02:28):
Thanks so much, emily .
It's just lovely to be here andI'd also like to acknowledge
anybody listening to this withtheir own lived and living
experience too.
So my husband and myself wereboth working mental health at
the time when Josh, who's theeldest of our four children,
became very unwell very quickly.
(02:48):
He was 16 at the time andbecame very unwell with
psychosis which came on verysuddenly and, honestly, didn't
resolve in any way for five tosix years.
It was initially a firstepisode.
So it's psychosis which didn'tresolve which then became
schizophrenia which then turnedinto a treatment-resistant
(03:10):
schizophrenia.
So during that time he had norespite from symptoms.
We tried lots of differentmedications and while he was
getting side effects from all ofthose, he wasn't getting any
break from his symptoms.
He was tormented and exhaustedand it was honestly the hardest
thing that we have been through.
I'm really happy to be able tosay now that Josh started
(03:33):
clozapine just after his 21stbirthday and that was
life-changing and in so manyways he has recovered and come
back.
He's studying, he's working nowand he has joy and a full and a
meaningful life.
Speaker 5 (03:47):
So, cheryl, you mentioned that you are a mental
health professional.
You're working in mental health.
When Josh became unwell.
What was it like being on theother side, where you were
seeking help and treatment forJosh?
Speaker 3 (04:01):
So in some ways, having some knowledge was an
absolute blessing that when Joshbecame unwell, we were able to
really see that quickly andrealise that he needed help.
I had some amazing supportivecolleagues and clinical
colleagues that really just wereable to point me in the right
direction and get that help.
But in saying that, it's alsothe hardest thing that anybody
can ever go through to watchthis happen to someone they love
(04:24):
.
And it was very public for mein some ways.
It was, um, a little bit likethe emperor's new clothes that
my personal and my professionalwork just collided in the
respect that.
Well, when Josh had his firstadmission, I had clients on the
ward there too.
So I remember being in a familymeeting with him where, um, I
was trying to listen to theinformation and find out where
(04:45):
we're up to, and I had clientsknocking on the door yelling out
Cheryl, cheryl, get me out, getme out.
And trying to peek in the doorand trying to not fall apart on
the ward as I was really quiteemotional too.
But also they say not to airyour dirty laundry in public,
but literally this one night Ijust as you do in the middle of
winter in Melbourne done a bitof a hand wash of all my bras
(05:06):
and everything and I had thosedrying by the fire and we had to
call the cat team.
Josh was really, really unwell.
I just went into panic mode anddidn't honestly think until we
were all sitting in the room andhe was being assessed and I was
thinking the guys that I workwith are in here and I've got
all my wet bras drying in frontof them.
I also had a doctor that I'dworked with for a very long time
.
Say to me, what have you done?
(05:27):
What have you done to him tomake him like this?
So I think, as a mental healthworker, it was honestly holding
up a mirror to my practice aswell, because, honestly, I saw
things on both sides so clearly.
Speaker 5 (05:40):
We're talking about what is helpful and how
important it is to workcollaboratively with the support
team for your loved one, foryour family member.
Tell us a bit about thatexperience, about actually
finding the right team, thechallenges, and I guess you know
what you found really helpful.
Speaker 3 (06:01):
I think at the end of the day, it's having clear
communication, just clearcommunication and really not
giving up.
For me, when NDIS came in, itwas very, very new.
Josh's assessment was at thevery, very start of the rollout
in Victoria and it wasn't aready workforce.
So it wasn't a workforce thatunderstood the complex needs of
(06:23):
mental health.
And I actually look back on ourfirst assessment now and think
it was just so ludicrous.
The young girl that wasassessing us had come from
working in a bank the day beforeand she honestly had no idea
what complex schizophrenia couldlook like, what Josh might need
, and also the support peoplethat we had in the room.
(06:43):
We brought along one of Josh'ssupport workers just as a bit of
moral support.
He actually asked the assessorout in the middle of our
assessment.
So that was sort of just themind exploding process it was
for us With NDIS.
It really made me think, okay,what we want for our son is to
have a full and meaningful lifethat builds his independence,
(07:06):
that it's a life that he wantswhere there's gaps, he's
supported in those we don't have, a life that he loves and is
directed by him.
But there wasn't at that time aworkforce to deliver that.
So I wrote Josh's firstrecovery plan, as directed by
him, by really sitting downsaying what do we want this to
look like?
It was about future planning aswell, and it was about how do
(07:30):
we enable him to keep hisindependence not really
pathologize our relationship,because there was a real push
even from day one that we wouldcase, manage him or support,
coordinate him.
But for me it was reallyimportant that this process was
led by Josh for Josh anddirected by him, not directed by
us.
(07:52):
The other thing I would reallywant to say is keep ringing.
Sometimes communication can bereally really poor, or sometimes
communication between careteams or medical staff can be
not in layman's terms, so it canbe a quick conversation that
you really don't understand.
So it can be how to just makesure that we do understand.
(08:15):
So just keep asking.
If support coordinators aren'tringing you back, keep ringing.
Keep fighting, you will getthere.
And if the care team isn'tright, keep looking.
Change care teams, keepfighting, you will get there.
And if the care team isn'tright, keep looking, change care
teams, keep looking.
We're so lucky now that we dohave some really experienced
mental health workers workingwith Josh and the difference in
him has been phenomenal.
Speaker 5 (08:36):
You just mentioned that.
You know, sometimesconversations with people on the
phone, with professionals andthe care teams it's hard to
understand what they're saying.
What are some of the thingsthat you would like the people
who attended the Complex NeedsConference, the people listening
to this, who work in this field, who are part of support teams
(08:56):
for people with complexpsychosocial disability, complex
needs what do you want them toknow from your perspective as a
family member of someone who'sgot, you know, a serious mental
health condition and there's alot of barriers to them being
able to live the life they want.
Speaker 3 (09:19):
I think number one it's to know that recovery is
always possible.
Ndis gives us really it's onesystem to fit all, so trying to
find that individual pathway inthere is really really hard.
As workers, we need to beflexible.
We need to be able to thinkoutside of the box.
Something I'd really like tohighlight is that at times, as
(09:43):
workers, we don't rely enough onfamilies and carers to be our
allies.
We need to advocate family andfriends and carers are your
allies.
They know so much informationabout the consumer because they
know them best.
They spend most time with them,so they can just be so much
assistance to you.
Speaker 5 (10:03):
And I know we've spoken before, but one
particularly hard aspect of thejourney you've had with Josh and
for him is getting themedication right.
Do you want to talk a littlebit about that journey with
getting that right andadvocating and what you had to
come up against?
Speaker 3 (10:21):
So originally we were in the youth mental health
system and then that turned intothe adult mental health system.
I think something that stilltakes my breath away can be the
stigma in mental health,particularly with young people.
Something we came up againstwith just even families and
friends was people's opinionsthat they felt that we needed to
(10:42):
know.
We needed to know what theythought of everything that we
were doing.
I think with mental health, thehardest thing in this space,
when someone is really unwell,is there's no guideline to how
long it's going to take torecover.
There's no guidelines or surefit medication such as
antibiotics to fight infection.
It's finding the right one thatfits.
(11:02):
Josh was really sensitive tomedications and he was really
treatment resistant.
So we had five, nearly sixyears where in so many ways he
was lost.
He was so tormented by hissymptoms, by auditory and
tactile hallucinations that werehappening for him constantly,
(11:22):
that he was just tormented.
He really shut down.
When he did manage to sleep, hewould often have psychotic
nightmares so he would wake upscreaming.
So we felt in so many ways thathe was lost and we weren't sure
if we were going to get himback.
The other thing is he did workso hard in his recovery.
He tried every medication.
(11:43):
He did everything suggested tohim and just never gave up on
that.
But unfortunately he would haveall the side effects from
medications but nothing wouldtouch the side of his symptoms.
As this went on, I startedthinking more and more about
whether clozapine would besomething that we could possibly
try, especially when his careteam started talking about well,
(12:06):
maybe we should go down theavenue of trying ECT.
That that might be something.
There's a lot of concern aboutsaying someone's so young and
clozapine, when it's such amedication with so many known
side effects.
There's also a lot of protocols, so we had to have very
significant trials of othermedications.
(12:28):
That went on for many months toto just make sure we were doing
the right thing.
But during this time, this wasalso time that Josh lost, where
he just stayed in that reallyunwell space, suffering.
So it was really trying tobalance all of that.
And then when we did trial,start the trial with clozapine,
it had to be very, very slowbecause it does have a lot of
(12:50):
side effects and it had to hadto be done in hospital and then
it had to be done in acontinuing care unit.
It's certainly not somethingthat any parent or care team
would do lightly, but for him itwas our miracle in lots of ways
.
So for five years for us it wasreally um, we felt that we when
(13:10):
I say that I felt that we'd lostJosh.
He was so sort of blunted ineffect, he couldn't smile, he
couldn't react, he lost hisreactivity.
This is a boy that had alwaysbeen really cheeky, a real
larrikin.
He'd light up the room with hissense of humour and he was
honestly just existing.
Clozapine has given him thatback when I say he studies now
(13:32):
and he's got a job that he loves, he's got this life.
He's got that reactivity andjoy back in his life and we're
really grateful for that.
But I think the role of carersin mental health is that we
never give up advocating andfighting and pushing, and this
doesn't have to be done in anabrasive way, but it's sometimes
(13:53):
it feels like you are bangingyour head up against a brick
wall and you just have to keepgoing.
And we were told many times tojust accept that.
Maybe this is baseline for Josh.
But I knew that this, this wasnot a life that Josh wanted and
I really don't think we wouldhave kept him here if we hadn't
have kept pushing.
Speaker 5 (14:10):
So, cheryl, I guess for people listening who may not
be aware of what clozapine is,can you explain a little bit
about that?
Why was it hard to be able toget someone on that?
Speaker 3 (14:24):
Well, clozapine is an antipsychotic medication that
does have lots of side effectson the body.
It does require compliance bythe person on it because it's
monthly blood tests.
It's a medication that youcan't stop suddenly or you will
end up in hospital.
It can affect the heart so manylong-reaching effects that have
(14:46):
consideration, so at times thatwon't be suitable for the
person that you are looking at.
But also, as a worker, I hadseen some absolute miracles with
clozapine.
I remember years ago lookingafter this young boy and he
always had his head down and hishair in his face and honestly I
couldn't have even told youwhat his face looked like
(15:08):
because, yeah, he would justhave his head down, rocking in
the corner and Clozapine was hisway back and what emerged was
this amazing young man who wascreative in so many ways.
He was a singer, he was anartist and he honestly came back
before our eyes.
And I'd heard of other stories,I'd done lots of research, I'd
(15:28):
worked with a lot of consumersthat Clozapine had worked so
well for.
I think Josh's age was a hugeconsideration, that it's not
something at 21 that would bethe medical professional's
choice, because I think in lotsof ways, where do you go after
that.
That's the thing.
(15:49):
Should we save this for later?
Do we try it now?
And look, there was a lot ofstigma.
When we began the trial I evenhad family members who had some
sort of I think they'd probablydone some doctor googling and
looked at Clozapine and theywere ringing me and just going
ballistic that we could put himat such risk physically and
(16:10):
really not understanding that hehad no quality of life and that
fighting for him to have anylife was where we were at.
And you know we were desperatewhen I touched on a little bit
before.
But I honestly just don't thinkJosh would still be with us if
this hadn't worked, because hewas tormented.
He got no respite from thosesymptoms, it was day and night
(16:33):
for him and he was completelyshutting down and his thoughts
of suicidal ideation wereincreasing.
And, as a parent, nothingprepares you for when your child
doesn't want to be here anymore.
I mean, I don't think anythingprepares you at all for this
journey with your loved one, butcertainly to know that they
don't want to be alive anymoremakes it.
(16:53):
We have to try everything wecan to keep him here and we were
willing to try anything, andthis, of course, was all with
his consent too.
Speaker 5 (17:02):
And clozapine isn't something that you just hand
over and you take it.
Can you talk about the partthat you know you mentioned?
There's specific clozapinenurses.
Can you talk about the role ofthat in Josh's support care team
?
Speaker 3 (17:19):
So when you're on clozapine it's a lot more of an
acute care team that you'll haveinvolved with you.
As I mentioned before, it'sthose monthly blood tests
because depending on the bloodlevels, the dosage of clozapine
changes monthly.
So part of Josh's care team, aswell as being under a
psychiatrist, he's also under aclozapine nurse.
(17:39):
So they're in partnership inthe community.
Speaker 5 (17:44):
Over the years.
So Josh became unwell when hewas 16, he's now 30.
So it's a few years now.
What is his care team lookedlike and what have been some of
the wins?
You know the things that havereally worked.
Speaker 3 (18:01):
We've had some absolute champions over the
years that have gone over andabove.
They've been really flexibleand thought about outside the
box about how do we make thiswork and at one stage that was
organising Friend IS to be withJosh of a Nighttime All
different creative ways.
We started in the youth mentalhealth system Look, they're
(18:23):
amazing for Josh at that timeand then we transitioned into
the adult mental health system.
The wins for us were certainlystarting Clozapine that was
amazing.
The other wins were when Joshwas involved in the youth mental
health system with Headspaceand the Discovery College.
He became really interested inpeer work so he did some study
(18:45):
there and was hosting somesessions and just to see his
confidence and independence growin doing that and just flourish
was amazing.
I think when it's such acuityit's really important that
there's good rapport between theconsumer and the people that
are caring for them, becauseit's got to be honest
(19:07):
conversations and being onclozapine is something that does
really control your life.
It's really hard.
So if Josh wanted to traveloverseas for two months, that
would be really hard to managewith dosages and blood tests and
all those sort of things, andalso taking that amount of
medication into some countriesis a really huge thing.
(19:28):
He's a young man of 30.
He can't drink excessively.
He's really had to adapt and bewilling to give a go.
I think it's one of thosemedications that it can be an
absolute miracle that the personon it's got to be willing to
make a go.
I think it's one of thosemedications that it can be an
absolute miracle, but the personon it's got to be willing to
make the sacrifices to stay onit.
As I said, it's not somethingyou can stop suddenly.
You will become very unwell.
(19:49):
You'll end up in hospital.
Speaker 5 (19:51):
And Josh has gone from being a teenager to now a
man.
How have you found the balancewith working with your son's
support people?
How flexible do you have to be?
How did you have to learn thatyou know you've got to push,
then sometimes you've got toease off and I guess, working
with Josh about that.
Speaker 3 (20:13):
We learned very quickly that care teams would
often just discuss everything infront of us.
So with talking with Josh, wejust came up with a way during
his appointments.
You know, no young man wants totalk about their sex life in
front of their parents or tohave embarrassing questions
asked in front of their parentsand they're not going to answer
(20:34):
honestly, they're not going toanswer openly.
We learned very quickly to sortof step in and step out of
appointments and that'ssomething that's worked really
well for us.
I think too, as Josh'sindependence has grown, our need
for advocacy has lessened.
At this time he's got anamazing care team, but at times
where there's gaps it doesincrease.
(20:56):
I can see it's so dependent onthe rapport that he has with the
people that are working withhim, and if he's happy and if
he's feeling heard, the amountthat he needs to lean on me has
lessened.
But it can be really difficult.
As parents our hope is thatJosh will have a full and
meaningful life that is definedby him, and as a 30-year-old we
(21:19):
want it to be a life ofindependence that he enjoys,
that he's in control of.
But at times he's not heard andthat's when we feel that we
have to advocate.
Sometimes it's been continuallytrying to find a good GP that
understands him.
It's been trying to findworkers that understand that
therapeutic relationship andwhat that can look like, and
(21:42):
they've got to have theknowledge and expertise to do
that.
So I think if you find theright people it's amazing.
But don't give up.
If they're not the right people, keep looking.
Speaker 5 (21:52):
What does Josh's care team look like right now?
Speaker 3 (21:56):
So at the moment Josh's care team.
So there's a consultantpsychiatrist that he sees
monthly, then he sees aregistrar and he sees a
clozapine nurse and a casemanager.
Most of his appointments noware monthly.
He's also got to have bloodtests to go to those
appointments.
But then he has the NDIS sideof things as well.
So he's got the supportcoordinator and he's got two
(22:18):
main workers at the moment thatare with him for a combination
of hours that works for himduring the week and it's the
supports that work for him.
Now, what kind of supports.
Speaker 5 (22:29):
Does Josh have that for Like?
Is it what he feels he needs atthe time, or are there certain
things that do require that?
Mental health support worker?
Speaker 3 (22:39):
At times it might be going to appointments that he's
feeling quite anxious about.
Psychology was a really bigthing when Josh was so unwell.
Psychology wasn't somethingthat was appropriate for so long
, so really that's only beensomething in the last few years
and he can feel quite a lot ofanxiety about going to these
appointments.
So having a support worker takehim and bring him back from
(23:01):
those appointments has beensomething that's really helped
Josh, and also sometimes to theclinic as well.
If, for whatever reason, I'mnot able to attend appointments,
having a support worker go withhim has been huge.
Josh's current support workerhas really worked on some of
Josh's interests.
(23:22):
He's loving bushwalking andgoing to the gym and often
that's what they'll do togetherand that's just been working so
well.
Josh loves it and it's reallyhelping bridge those gaps.
These aren't things he'd do byhimself.
He'd struggle to do by himself.
He doesn't drive, so just beingable to go with someone has
been life-changing for him.
Speaker 5 (23:42):
You've got three other children.
Josh is the eldest.
Can you talk a little bit aboutwhat it's like when you've got
a child that needs so muchattention, understandably, but
you've got other kids?
Speaker 3 (23:55):
So when Josh became unwell so unexpectedly, it
became a tag team between myhusband and myself someone with
him being so acutely unwell, Oneof us was with him 24-7.
We would tag team each other.
So it was about protecting him,protecting our relationship,
(24:16):
which was falling apart at theseams by the stress of this, but
also about protecting our otherchildren and was about and when
I say that it was aboutprotecting their rights to be
kids as well.
I didn't want them to be pseudocarers or have their
relationship with Joshpathologised.
Our dream was that they wouldstay as close as they were and
(24:36):
get through this, one of thethings that we did.
Well, I'm really open with thefact that I've had a huge amount
of counselling and a hugeamount of grief counselling.
When this happens to someonethat you love, there's so many
layers of grief when weespecially around milestones.
I mean.
Something that just comes tomind is Josh's 18th and 21st
(24:57):
birthdays, which are usuallysuch huge celebrations.
He was in hospital for both ofthose, so the celebration was
quite different.
Some of his friends are marriedand saying to have kids now or
buy homes, and Josh's life looksa little bit different.
So I just needed to processthat myself and that was around
my hopes and dreams and sadnessaround that and working out how
(25:21):
do we have resilience to keepgoing on this journey.
But this was also somethingthat was hugely beneficial for
my kids.
So Josh's siblings had a lot ofpsychoeducation when they needed
it.
They had their own counsellingand supports when they needed it
, and we've had some familycounselling that I'm so happy to
report that I honestly think,if anything, it's made us closer
(25:44):
.
The kids all have a greatrelationship.
They spend a lot of timetogether independently with us
and there's lots of laughter.
Their favourite thing is tolaugh at me, so that always
shows a good, healthyrelationship.
They're certainly not scared tomock their mum and dad.
So I think it was about lookingat and the hardest thing I felt
like I was constantly pivotingand look at times I felt like
(26:06):
that hamster on the wheelbecause we both had to try and
work to financially be able tosurvive all of this.
Someone had to make sureeverybody ate.
Someone had to make sure thatthe other kids had a mum and a
dad accessible for them toowhile we were doing this,
Because at the same time theyalso were going through VCE or
school or university.
(26:27):
So it was a lot of pivoting, alot of flexibility and a lot of
tag teaming.
Speaker 5 (26:34):
I guess, as we're wrapping up, what is one or two
things that you really wouldlove people to take away from
this discussion People who workin the sector, professionals as
well as carers this is a really,really valuable conversation,
but, in particular for thepeople who are supporting your
(26:57):
son or supporting other people,what are the main things that
you want them to hear?
Speaker 3 (27:04):
I really feel strongly that recovery is always
possible, and this is definedby the individual.
It doesn't necessarily mean alife that is symptom-free, but
it's about a full, meaningfullife that they love and that
they want to live.
So what I would want to say isyou know, don't stop fighting,
don't give in, for the workersin the room too.
(27:26):
At times, families, friends andcarers aren't welcome in a care
team, but I'd really like toencourage you that they can be
your greatest allies, becausethe expertise that they can
bring about the person and tohelp build relationship about
the people that they know best,they can just be the biggest
asset to you.
(27:46):
Advocacy as a carer, as someonecaring for your loved one, is
the biggest thing that you'llever do.
We do keep finding, we do keeppushing.
Don't give in, don't give up.
I think with the NDIS, we'vegot one system to fit all, but
as workers we need to work outhow can we tailor this to the
(28:06):
individual, to meet their needs,to have their supports covered.
When we look at family andcarers, if we can consider
supporting the supports of ourconsumers, we get best outcome
for everyone.
Speaker 5 (28:20):
Cheryl, I'd like to get your thoughts about.
Psychosocial disability is notunderstood among the public, but
even I've heard people say thateven professionals don't
understand it and they don'tunderstand the impact that it
has on a life, that it isincredibly hard and it presents
(28:41):
a lot of complex barriers.
We've spoken at the ComplexNeeds Conference.
This is all about people whoreally need our help and they're
on the margins.
There's a lot of things goingon.
Why can't the sector and, Iguess, society as a whole?
Why is it so important that wedon't say this is too hard, this
(29:02):
person's too hard, they'rebeyond help?
Speaker 3 (29:05):
The most important thing is that we remember we're
talking about people.
We're talking about someone'slife.
Sometimes that person issomeone they don't know what
they want.
Sometimes they don't havepeople to advocate for them and
often they're not heard.
So it's about finding ways thatwe do make that happen.
We don't have people toadvocate for them and often
they're not heard, so it's aboutfinding ways that we do make
(29:26):
that happen.
We don't give up.
Recovery is possible, as definedby that person.
And I mean, look, I'm someonewho's worked for many years in
mental health and we have had anumber of people that we've
worked with that were deemed toohard or they look really,
really terrible on paper andyou're almost fearful or
dreading meeting them.
And then you meet them andthey're nothing like that
paragraph about them.
It's about not forgetting we'reworking with people and they
(29:49):
deserve to be fought for.
We need to be creative in ourdelivery, we need to be flexible
, we need to be not scared towork outside the box, but I
think our story with Josh is areally good example of not
giving up and not settling.
We're encouraged many times tosettle for the fact that this
half-life he had, was it thatthis was baseline.
(30:10):
It wasn't going to get anybetter than that, but you don't
give up.
You keep trying.
Families and carers, friendskeep trying.
Families and carers, friendskeep advocating.
Speaker 5 (30:18):
Don't give up, were you told that by a few people
that you know, maybe this is asgood as it gets for Josh.
And what was it that made youthink, no, no, this is not going
to happen.
Speaker 3 (30:31):
We were told this many times over the years, where
we tried differentantipsychotics, we tried
different combinations ofmedication and nothing was
making a difference.
We were told that this,honestly, might be it.
So we just needed to acceptthat and move on.
I 100% refused to do this.
(30:52):
I was not going to give up.
I became this person thatresearched and read.
I spoke to every clinician Iknew and every health
professional I knew.
I knew there had to be more andI just refused to give up.
I'm going to fight for my sonto have the life that he
deserves and to fight for him tocome back.
Speaker 5 (31:13):
Cheryl, it's been great talking to you.
You've just got so muchvaluable experience and you
share that as well in your work.
I just want to thank you somuch valuable experience and you
share that as well in your work.
I just want to thank you somuch, and also to Josh, because
he did give permission for youto talk about this.
He's very supportive of that.
Just want to thank you so muchfor sharing your experience.
Have you got any final thoughts?
Speaker 3 (31:32):
I just wanted to say that Josh did give his full
consent and permission for this,and we've actually done
sessions together too for healthprofessionals, from the side of
the consumer and the side ofthe carer.
Speaker 2 (31:46):
You've been listening to Get Real talking mental
health and disability, broughtto you by the team at Irma 365.
Get Real is produced andpresented by Emily Webb, with
Carenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time If you've been
affected by anything discussedin this podcast.
Speaker 5 (32:05):
You can phone Lifeline on 13, 11, 14 or go to
lifelineorgau.
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