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Hello. I'm Joan Hughes, the CEO of Carers Australia.
It gives me great pleasure to introduce this program -
Caring For Carers: Depression And Anxiety And The Impact Of Caring.
This program is a joint initiative
between the Rural Health Education Foundation
and beyondblue, the national depression initiative.
It's well known that carers make an enormous contribution
to their home, to their family, to community and to society at large.
While caring can bring many rewards to individuals and families,
we now know through research that caring can place enormous strain
on the health and wellbeing of family carers across this nation.
This broadcast recognises the important role that health professionals have
in asking the carer how they are feeling or how they are coping.
It is very easy for the family carer to put their own health needs aside.
Sometimes that becomes secondary because they're so concerned about the person
they are caring and supporting.
Often, signs of depression with family carers go unrecognised,
and health providers often put it down to life stages
or other stresses of everyday life.
It is absolutely vital that health professionals address
the mental-health needs of carers.
Caring must be seen as a shared responsibility
within families, within community and across systems of care.
We need to make sure that we're all working towards maintaining
and enhancing families' own health and wellbeing.
Thanks to Joan.
Hello, I'm Norman Swan.
Welcome to this program on caring for carers,
anxiety and depression and its impact on caring.
Carers provide unpaid care and support to family members and friends
who have a disability, mental illness, chronic condition,
terminal illness or who are frail aged, and we couldn't live without them.
Caring for a family member can be rewarding and demanding.
But the often overwhelming responsibilities of being a carer
can have a significant impact on a person's mental health.
Tonight, we'll discuss the importance
of addressing the mental-health needs of carers,
and the particular challenges
of caring for someone who has mental-health issues.
As always, you'll find useful resources
on the Rural Health Education Foundation's website:
Let's meet our panel.
Jo Battaglini works in Darwin as a social worker.
She has also worked in juvenile justice, child protection,
Indigenous mental health and in a women’s refuge.
- Welcome. - Good evening.
John McGrath is deputy chairman of beyondblue,
the national depression initiative,
and has served as a board member since its inception way back in 2000.
John has personal experience of being a carer
of family members with mental illness.
- Welcome, John. - Good evening.
Chris Mitchell is a GP in Lennox Head, New South Wales.
He's the current president
of the Royal Australian College of General Practitioners.
- Welcome, Christopher. - Thank you.
Linda Rosie works for the Mental Health Council of Australia
on mental-health carer issues.
Linda is project manager of the Carer Engagement Project,
which surveyed the issues and concerns
of mental-health carers across Australia. Welcome, Linda.
Welcome to you all.
John, what's your story as a carer?
As brief as I can be for those listening tonight,
perhaps a touch of reality of what really happens to families.
We lived in a farming community in south-west Victoria.
My wife and I had five children.
And grew up in a fairly normal family environment, I think you'd describe it,
all seemingly doing well at school and at sport
and all those things that families participate in.
But our second boy, Shane, who had been a straight-A student throughout school
hit a bit of a wall in his final year of secondary school.
His principal uncharacteristically invited himself to our place for dinner.
He was concerned about Shane's grades and what was happening.
So we had a discussion with Shane,
and Shane said he was bored and didn't find school challenging anymore,
those sorts of reasons or excuses.
I gave him a bit of a dad-to-son talk, and he bucked up for awhile.
But ultimately, he finished his HSC that year with a deplorable fail
from a straight-A student.
He refused to go back to school to have another go.
He then went and took a TAFE college course.
We weren't alarmed at that stage
because there was no great information available for families.
We just thought this young fella, who was a spirited boy
from the time he was born, was staking his claim in the world.
This was a normal adolescent period.
JOHN: That's how we interpreted it.
He was a spirited young fella. He had a lot of spirit.
He went off doing this, and he done different things.
I had a small business at the time. He came and worked for me.
He was spotted by an international manager of a large company
that wanted to take him to Melbourne to do training.
He subsequently did that.
But after a short period of time there, he just up and left.
They had no idea where he was.
I ultimately found him.
He'd been busy selling every possession he had,
and had made a decision to go to India
and help starving and underprivileged people.
He felt that was his call in life.
That raised alarm bells for us, but he wanted to do it.
He seemed reasonably rational in his description of his want at that time.
So we went and bid him goodbye, and he went for a year.
But we got a very distressed phone call 11 weeks later,
and arranged to get him put on a plane and brought home.
Therein started a roller-coaster that a family that has no information
is frustrated and disillusioned with when it starts.
What was wrong with him?
At that stage, we still didn't know.
He was certainly behaving uncharacteristically,
but there was no symptomology from our point of view
with the little knowledge we had.
That's the important message here - the little knowledge we had.
Then I received a phone call from his older brother.
He said, you'd better come to Melbourne.
Shane's had a serious attempt on his life.
He was in intensive care in the Alfred Hospital.
We went down, and a trainee psychiatric registrar there
told us that he thought he had a mental illness, but he wasn't sure.
They ultimately discharged him.
We took him back home, and the roller-coaster ride started.
He was ultimately diagnosed with a mental illness.
He battled that for ten years with varying degrees of success,
but at that stage couldn't find a medication able to settle him.
He was a good-looking young fella,
and I can say that 'cause he took after his mum.
He didn't take after his dad.
He prided himself on grooming, he loved social life.
So you can understand that taking medication
that caused him to drool at the corner of the mouth or shake in the hand
or tremble in the leg, was not a good social engagement technique,
so he would stop taking the medication and in a short period, crash again.
Ultimately, he had five suicide attempts.
On 16th April, 1993, he was successful in taking his own life.
What a tragic loss of a young life.
You look back, I'd like to think if Shane was alive today,
we might have the medications that might be able to turn his life around.
We certainly have more information for us as a family
to make more considered, earlier interventions and judgements.
about what sort of treatment.
It's obviously been the driver behind you being involved in beyondblue,
but what were the issues for you and your wife as carers?
The issues were the lack of knowledge.
We were given a lot of information
when the final diagnosis of his mental illness was portrayed to us,
but there was no pathway of care.
There's no pathway of management that we could follow.
We were given this information, then sent on a long journey home.
The long journey home was probably ten minutes,
but the longest drive of my life.
We had no idea what this information meant to us
and how we as a family were going to manage it,
how we were going to access help, how we were going to find people
that might have had a similar experience
that could give us some learnings about how they might go about doing it.
NORMAN: Did he want help?
No, he didn't want help.
We actually had him sectioned from time to time.
Had the horrific experience of seeing him carted away in a police van
after I'd rang the police.
Not the sort of thing any parent wants to do,
but when other family members' safety is at jeopardy
and he's unable to be controlled,
they're the sort of decisions that have to be made.
What did it do to you and your wife's wellbeing?
It destroyed our family. It turned our family upside-down.
It has an horrendous... We had four other children in the house.
Trying to cope with Shane's behaviour
and allow those kids to lead a normal life and study and be part of a family -
we're a close family - it was a real roller-coaster.
It really damaged relationships.
It was an horrific episode,
and I would never like to see anybody faced with that again,
which is why we need good messages for people, good information.
Information is power.
The message that might come later as well is,
we need to be listening to what families are saying.
Families are impacted tremendously by this.
Shane's sisters and brother have been impacted tremendously.
His mum and I have been impacted tremendously.
Do you think you would have been affected less
if you'd had more thoughtful intervention directed to you as carers?
I think the answer to that, Norman, is yes.
That's the great void that existed at that time.
There was no beyondblue website.
There was no available information.
There was no information for consumers to find out what it was,
how it was presenting in them, what I can do, what options do I have.
They were normally given a treatment, and if they took it, they took it.
Just a few days before he died was Easter Sunday.
He was in an horrific state of mind.
I had wrestled with him for two hours trying to keep him off the road,
from throwing himself under a transport - we lived on a main highway.
He wore me out. He was a strong young fella.
I rang my son-in-law and said, you're going to have to come and help.
He came around, and in the interim period I rang the psych service.
Out came two psych professionals, deemed him not fit to be sectioned and left,
irrespective of what judgement I or my wife or the other kids made.
They made a decision that he wasn't to be admitted.
So we were left with this. In desperation, I rang our GP.
It was Easter Sunday, he was a married man with three little kids.
Phil ended up on our doorstep,
sat on the back step for, I don't know, an hour and a half with our son,
listened to him, talked to him,
and eventually got him to go to hospital with him.
It should have been something done by the professionals,
but the GP, which Chris will be pleased to hear, was just outstanding
in terms of the knowledge he had, the understanding he had,
but more importantly, the empathy he had. He was prepared to listen.
Chris, do you find that the carer is under the radar for the GP?
- That? - The carer is under the radar?
I actually don't. I think GPs focus on carers a lot.
We have a very long-term relationship with families over time,
and carers are usually our patients as well.
The needs of the carer is fundamental to holistic care,
which is what GPs are trying to deliver.
But we do need to listen to both sides of the story
and get an understanding of the needs
of both the person with the illness and their carer.
The impact is considerable.
Evidence, although it's not well differentiated
between people caring for somebody with mental illness
versus a physical illness, although it can be both,
it's a lot of depression and anxiety themselves,
diminution of their physical wellbeing -
back to smoking, drinking, eating badly, not getting any exercise -
we're talking about a high-risk group.
Absolutely. They don't look after their mental health, their physical health
without extra support and the opportunity to share their concerns.
That's an important part of caring for people that are sick -
making sure we look after the carers.
Linda, you've been doing workshops with carers around the country,
different ages, different groups.
What have been your findings?
Some of the things that John said quite clearly -
the need to be heard.
Carers find it remarkably difficult
to give information that they may have about the person they care for.
As they become iller and iller,
there seems to be not the facility to be heard about their concerns
that could lead to early intervention to prevent a crisis in their mental health.
That was really one of the major things carers came up with -
the need to be heard, that space and time,
particularly from the GP as the first port of call.
NORMAN: What about identifying the problem for themselves,
rather than the other person?
The story is that carers don't identify themselves as carers.
They identify more with the person they're looking after.
That's where their focus is.
They feel self-indulgent if they talk about themselves.
In the workshops we did -
we did 116, and two thirds were in rural and remote locations -
we came up with 15 findings.
Almost half of those are issues to do with the care
of the person they care for, not with their own carer issues.
It was like drawing blood from a stone to get them to talk about themselves,
and how being a carer impacted on them and their lives,
and to think about what those implications were.
Their focus was primarily on the consumer, not on themselves.
It's very hard to draw them out.
Did you get any sense of... There may well be a lot of logic to that.
If the person they're looking after is looked after better,
the stress on them might be less.
Absolutely. That's what they said when we talked about respite care,
their options there.
They raised their eyebrows and said, no, what we actually want
is better, coordinated care for the person we care for.
That doesn't necessarily mean medical care.
Coordinated - that's medicalspeak, or bureaucraticspeak.
What did they say that you're extracting to mean better coordinated care?
There are all sorts of bits and pieces.
Local organisations do bits and pieces for carers, for consumers.
It's different in each State, different in each town.
It's a matter of what's happening locally.
Often, the people who provide care in different locations
don't know what anyone else does.
We sometimes go to workshops, and you can tell if it's a good one
where the service providers knew each other well.
In some small places, the service providers were introducing themselves.
They didn't have that coordinated network of care
that the carers really need to find out what's available, how to use it.
You were nodding, Chris.
I was interested in fleshing out the need for a break and respite.
It seems to me that that is really important.
I'd be interested in why that was a lower order than coordination.
Really, the carers' issue is -
to get some help in to care for the person we care for
will give us the respite.
We don't need that for ourselves, 'cause there's nothing wrong with us.
To tell them to look after themselves as a priority and take respite
was very important.
Some people will say that looking after somebody with a mental illness
is actually harder work, more stressful,
than looking after somebody with a physical illness.
- Did that come through? - Yeah.
John really gave us a true example there.
The chaos that that behaviour can bring forward
and the unpredictability of it,
not knowing what's going to happen in the future.
Fear of the future was a major issue that came through too.
Unpredictability, whether or not you could go to work today,
those sorts of things were a real stress and strain.
Sorry, Jo?
Just back to John,
the stigma is not just with the person who's got the mental illness.
It's stigma that's pervading the carer.
It becomes an obstacle to them as well.
I'm wondering, with health professionals,
that they're not realising
that they're actually joining in on not talking about a way of operating.
I think that's very true.
That was one of the issues they brought up - that stigma.
It leads them into isolation and unwillingness to mix in the community,
because friends and family don't understand
and find it difficult to understand,
particularly if you have drugs and alcohol involved as well.
The differentiation here between people with, say, psychosis
and anxiety and depression? Again, often the two can be mixed.
Within our workshops, we didn't find a differentiation
as clearly marked as you might imagine.
With depression and anxiety,
you can still have unpredictable, chaotic behaviour.
Carers would have to accommodate that in their lifestyle too.
I think the difference would be
in the extremity of it.
My experience would be that the unpredictability of psychosis
is far more challenging
than the unpredictability of a depression or an anxiety,
not to downplay the unpredictability of depression,
but the unpredictability and totally irrational behaviour
of someone in psychosis is quite challenging on a daily basis.
To get people to talk about that is the challenge.
That's what Linda's telling us, to get people to focus on that.
Because they're not focused on that.
They're focused on the fact that they're feeling terrible.
They're not focused on the fact that their salary has gone down by half
because they're spending more time at home.
They're not focused on no longer being in the local group of card players
or whatever they did, because they're caring for their loved one.
It's very difficult to drill down and get them to focus on it.
That's where the first introduction of care into a program
has got to include the carer
so that they're listened to, then engage through care plans.
I find particularly carers of people with mental-health issues
seem to feel responsible or carry guilt for the diagnosis
in a way that carers for people with other disabilities don't.
Do you find that?
JOHN: That is a fact.
I thought we'd come out of the era
where families and carers were blamed for mental illness.
We went through a terrible era
where there was an outright blaming of families for mental-illness conditions.
I think we've moved on from that, but there's still a bit of it there.
As a consequence, families take it on themselves.
They feel guilt. They examine themselves about -
what if we'd done this differently when they were growing up?
What if, when they were ten, we hadn't done this?
There's no worse critic of a person than the individual.
Part of the community stigma is, it's all the parents' fault.
That's part of it.
The unpredictability is the other part of it.
The community is a little unsure how to deal with it.
That's a major challenge as well.
What about in Indigenous communities, Jo?
In Indigenous communities,
you've got the complex issue of poverty on top of it
and all the other social issues.
You're also dealing with a community where literacy is poor
around general health, let alone mental health.
There's a real need for health professionals to educate people more
about the brain being an organ, similar to an organ when you have diabetes.
There's no shame about diabetes,
but clearly there's shame about mental-health issues.
Do you think stigma is greater in Indigenous communities?
JO: Yes. - The double whammy.
Where you work is also a highly multi-ethnic community.
What about other culturally and linguistically diverse groups
in terms of approach?
Aboriginal and Torres Strait Islander communities
can be very tight-knit, family-centred groups.
I think that can be said for other groups, particularly in Darwin,
where there's difficulties accessing health services anyway,
not just because of language barriers, but also the medical language
and the whole alienating way it is.
You go to a mental-health service, it's quite alienating.
There's nothing healing about it, or inviting.
It gives off another message that this is a shameful place to be entering.
Families in many of these groups
do want to do the best they can with what they can,
and hope it will pass.
Often, families can be guilty of saying,
just get over it, pull yourself together.
That's the desire of people to want to be happy.
There's more of a concern around health professionals,
that they don't have better ways of engaging people
within their cultural contexts.
What did your workshops tell you about privacy?
One heard from carers a lot, probably more so, people with psychosis,
but also looking after people with major anxiety and depression.
They can't get information, therefore they're shut out of the process
because people fear divulging personal information.
It was one of the major issues carers came up with -
the way in which privacy and confidentiality legislation
is interpreted by health professionals.
They saw it as a complete barrier and an exclusion.
The things they needed to know
about the health and welfare of the person they cared for
were kept from them, so they couldn't do the job as well as they needed to.
For example, medication.
A lot of carers don't even know what medication the consumer is on,
even though they live in the same household.
They don't know what the side effects are likely to be.
They have no knowledge.
Without that sort of knowledge, they don't know how to care.
Let's continue this discussion after we've looked at the first case study.
The first case study illustrates issues to do with confidentiality.
This is a film case study taken from the beyondblue DVD.
It's called Carers' Stories Of Hope And Recovery.
It's available from beyondblue.
In it, Paul and Deb Cochran talk about caring for their daughter Jessica.
Jessica was diagnosed with anxiety and depression when she was 12,
about seven years ago.
Jessica had always been a great child growing up,
at school and at home and socially.
We never really had any problems at all.
She started behaving differently, she was stealing things from people,
which was a real shock to us, 'cause she'd been such a good kid.
She was telling us lies about things.
She was not talking to us anymore, and she used to always tell us everything.
Her social groups were changing too.
She wasn't mixing with the same kind of kids.
Given that she was going into her teens, we did feel early on
that this was probably just teenage angst and adolescent behaviour.
DEB: The reclusiveness,
and locking herself away in her room for long hours studying,
and the fact that she wasn't relating well with peers, even old friends,
was starting to make us feel quite concerned.
After talking with her and her refusing to share with us how she felt,
we said, if you you won't talk to us, we'll take you to the school counsellor.
We started with that.
It was discovered very early on that she was severely depressed
and fairly suicidal in her thoughts.
Very quickly, she was referred into an adolescent psych unit.
I think I did go into shock.
I just couldn't function.
It took several weeks for me to regain some sense of control
over how I was feeling and what was going on.
PAUL: You go through a roller-coaster of emotions
depending on the day and the time.
Obviously confusion, distress, despair.
It's just a roller-coaster.
Trying to manage those emotions is very difficult.
We were questioning ourselves as to what we'd done wrong,
which is natural for parents.
Also, some of the questions from the health-care professionals to us
was, what had happened to Jessica in the family life
that had led to these problems, as in, traumatic events.
There was a lot of self-searching going on.
I really did feel I must have done something wrong
for my child to go from being happy and healthy to having all these problems.
PAUL: There was nothing.
We'd had a very happy family life, a very stable family life.
No issues, no traumas, no dramas to speak of,
nothing to indicate why Jessica would suddenly go down this path
of depression to the point where she was suicidal.
We were very conscious of the fact
that we needed to look after Alex, her sibling, as well,
but because there's so much of your time and energy focused on the sick child,
it's natural that the other child will be left on the side, so to speak.
So despite our best intentions,
Alex struggled from very early on with what was going on.
Our extended family had a lot of trouble understanding what was going on.
They weren't living it every day.
When they did see Jessica previously, she'd been so healthy and normal.
They couldn't appreciate that suddenly,
the wheels had fallen off and she was quite sick.
One of the big issues we've had over the seven years,
right from very early on, was the privacy issue
and the fact that information wasn't readily available to us,
even as her parents and her carers.
Privacy laws dictate that at a certain age,
parents are no longer required to understand what's going on.
We were only ever told what Jessica was happy for us to hear,
and for a long time, she didn't want us to know much at all.
We eventually insisted that the professionals involved in Jessica's care
got together in one room at the same time with us.
It was a very difficult thing to organise, but we did achieve it.
We found these round-table conferences that we had once or twice a year
were absolutely crucial to make sure everybody was on the same page.
Us being at those meetings, as well,
meant we were getting information that normally we wouldn't be able to obtain.
The realisation that it was an illness separate to Jessica
that was the cause of the problem, it took me awhile to get that.
When I did finally get that, it was an absolute revelation.
The situation changed for my relationship with Jessica overnight
when I indicated to her that I got the fact that this wasn't you,
this was an illness that was driving your behaviour.
Things turned around quickly once I'd made that connection.
Paul and Deb Cochrane.
Chris, the messages there for you?
The power of that story is very impressive.
The message I get is listening to what the carers need.
Hearing what's hurting them is very important.
There's a few things there.
The involvement of the school counsellor was an important message,
and a useful one for GPs to consider.
The range of emotions that those carers were feeling.
And the issue of privacy and the way it was dealt with through case conferencing
was also a very helpful message.
Getting a real shared understanding of what information the carers need
and what information the patient is happy to share
is a very important discussion.
Privacy is actually quite complex.
What are the issues for you as a GP, on a day-by-day basis, with privacy?
The issue for me is making sure I've got a clear understanding
of what information my patients are happy to share and with who,
and that changes from time to time depending on patient circumstances.
NORMAN: John, do you think more is made of this than...
This is one of my hobbyhorses, Norman.
I get pretty excited, sometimes even angry, talking about this.
There's evidence that if the questions are put the right way,
we could get the right answers.
The best example of that was a survey at St Vincent's Hospital in Melbourne
through their mental-health sector,
where they surveyed all of the clients in their service.
NORMAN: Not the carers? - The clients.
It was a wide-ranging survey, asked in a way that elicited what they believed
were honest, well-intentioned answers.
86% of the respondents said they wanted their carers involved,
which is far less than what happens in real life.
As a carer, I get really annoyed.
What happens in real life is lower than the 86%.
Far lower. I'd suggest probably under 30%.
I don't have the figure, but very low.
The typical example of that DVD
is that these people had to convene the case conference themselves.
The system didn't do it. The mental-health plan didn't do it.
They had to convene that themselves to get the answers they wanted.
The system is upside-down when that has to happen.
Why isn't the system accommodating people?
We don't need to know everything as carers.
We don't need to know all of the intimate and private details
of the person we're caring for.
But we do need to know, as Chris mentioned, about the medication.
We do need to know about the treatment plan and what's expected,
how many times they attend the doctor
or how many times they're supposed to do a special activity,
and what sort of behaviour is this likely to present.
What are the side effects of the medication? Should we be aware of that?
We don't need much more information than that.
That's pretty simple, straightforward stuff.
It's hardly a breach of privacy.
But so many people hide behind it.
If the question is framed to the person with the mental illness,
saying, are you happy for your medications to be discussed?
We won't go anywhere near how many girlfriends you've had,
whether you've had sexually transmitted diseases.
We're only going to talk about these things.
Exactly. An agreement can be reached at a time the plan is put in place.
When the person is reasonably well and a treatment plan is put in place,
that's the time to discuss
what you'll convey to the family carer and what you won't.
As a family carer, I resent being given the responsibility
of caring for my loved one when they're not in hospital
and I have no say in what sort of treatment they get.
They send him home in a taxi at five o'clock on Friday night
because they don't want to keep him for the weekend,
and expect me to look after him, don't even ring me.
That's why I get angry.
They say it's privacy. We don't have the right to tell you that.
Well, I say, rubbish.
You were about to say something else. Linda?
The carers who knew about things called advanced agreements
or advanced directives were very excited by them.
NORMAN: They're not in every jurisdiction.
No, and they're not legally binding.
But basically, put into place with the right spirit and the right will
of wanting the best for the consumer from all parts,
of when a consumer is well, making a list, an agreement,
whereby these things are put into place when they become unwell.
That enables carers to be involved when the consumer is unwell.
Often, when a consumer is unwell,
the last person they want involved is their carer.
But that's not the real state of affairs, that's the illness speaking.
That's when, often, mental-health professionals are listening.
Even if they get a negative response in the first place,
they should go back and ask the question again - can we involve your carer?
That is important, 'cause it's a relationship over time.
You do have the opportunity to visit this over some time.
But it is that shared understanding of the information that is required
and the information that's prepared to be shared that's a discussion.
Jo, what are the issues if somebody alleges abuse,
and that's the carer?
I mean, abuse by the carer has been alleged.
Certainly, that's an issue in itself, if there's been abuse.
Clearly, the argument is that for consumers,
or people suffering with depression,
that they need to be connected with another human being for support.
Health professionals are not there 24/7 unless the person is in an institution.
The average person who's suffering with depression and anxiety
is living in the community.
There needs to be lessening of that isolation and loneliness.
Getting back to your point, John, about privacy,
sometimes that becomes an agent joining in with the depressive stuff.
I agree. I think it's used sometimes because it's easier than having a talk.
That's an issue.
There are going to be circumstances
where it is important to maintain privacy, it's just very rare.
The issue of abuse in itself, that's really complex.
You could do a session on that.
A health professional should advocate for that person
because that abuse will perpetuate that person's mental illness to deteriorate.
I agree with Chris. There does need to be a discussion.
There are some people, I think a minority,
that might fall into that category that you raised the question about -
that under no circumstances should they be forced to disclose information.
But that can be very easily determined.
Those people are normally very clear
about who they want a relationship with and who they don't.
It goes back to that discussion.
If the discussion is had,
the plan Linda was talking about can be put in place,
in terms of, whilst not legally binding,
it's an indication of what would work best
while a patient is in the best space
to say, I'd be relaxed with this, but I'm not relaxed with that.
You can come to an agreement.
And with goodwill and consistency, you can get through it.
Linda, what do you think are the key things that a professional can do
to help a carer through this time?
In the workshops, we listened to over 1,500 carers all around Australia.
And the No.1 issue was to listen,
to hear what they have to say about the consumer's health.
One of the most important areas they found was,
when the consumer is beginning to be unwell again, they know.
They live with these people.
They have a sense of things starting to go downhill.
There's no-one to whom they can give that information
to prevent an acute illness developing.
That's one of the things that they were finding very difficult.
There's no venue where they can put that information and say, please help.
NORMAN: And be believed. - And be believed.
Let's move on to our second case study, which involves a young carer called Ned.
Ned is 17 years old and lives with his mother, Sue.
His parents have separated. His father lives in another State.
Sue suffers from multiple sclerosis and has psychological issues -
depression and anxiety associated with her condition.
She has limited mobility.
Ned assists with her care, doing household chores -
cooking, cleaning, laundry, assisting with showering his mother.
He changes her catheter at night if necessary.
He's still going to school,
but he hasn't told his teachers of his mother's illness.
A hidden-carer issue, John.
The first that that would jump out at me from there is,
the primary health service professional who's providing some care to the mother,
given her disabled state, would need to be asking questions about,
what is this person's domestic situation?
Who is looking after her? Who's providing care for her?
A 17-year-old - how are we providing support for this young person?
What are they doing about school?
There's got to be a system.
We can't have gaps in the system where we can have someone looking after
the physical or psychological welfare of a person,
and not looking at whole-of-life issues.
Jo, children as carers must be more common in the Indigenous community.
It is, partly because of the way family structures are
as well as the level of burden from a number of areas.
For young people, they'll have a higher level of responsibility
because of the cultural issue of seeing it's an obligation
and what you should do.
What goes along with that is,
their own developmental needs as a young person gets neglected.
And they can be quite young.
Yes, like, age ten onwards.
What do your groups tell us about young people as carers?
It's very hard to access young carers
because they don't see themselves as young carers.
They see themselves as part of the family.
We know of young carers of five.
If they're a single child
in a home where there's a mother with mental illness,
they're a carer, and they do the job of a carer.
It's very hard.
There are no structures in place whereby that child is identified at an early age
as needing inputs into that family to assist them to cope,
and help for the child to grow up in as normal an environment as possible
with all the opportunities that children have.
What stories did you hear?
We heard quite a few.
One that is poignant.
It was an adult speaking who had been a young carer.
And this young woman hadn't learned the interaction to have a peer group.
She'd never really invited children home
because it wasn't a place for children to be.
She had so many jobs and responsibilities to do in the evening,
she didn't really make friends.
She just cared, and did everything necessary.
So as a woman in her 30s, she was finding that friendships would be nice
but she hadn't gone through that friendship stage
that children normally do. Very sad.
We're talking about families in poverty,
even though their means might have been considerable at one point.
Salaries are lost,
children can't get a part-time jobs themselves 'cause they're caring.
What do we know about social-welfare payments
that might be accessible, and the variability of those?
What we heard from carers in general is that Centrelink forms are inadequate
when it comes to mental-health issues.
To answer to questions is really quite difficult.
When it comes to a young carer, that's even harder.
NORMAN: Can they access Carer Payments?
I'm not sure on this, but under 16, I would doubt it.
- Maybe John knows more? JOHN: No, but I think you're right.
The problem they had with Centrelink and housing and all those issues that
people are concerned with when living on low incomes and renting houses -
and GPs - is being taken seriously as the carer
when they're standing there as a 12-year-old
talking about these serious issues, that they are actually responsible.
Some payments are open to the interpretation
that you could help young people,
but there's variability in how they're assessed from place to place.
Centrelink payments are national. That's the same sort of payment.
They're probably the most common ones.
There are two carer payments, but access to them for young people is quite hard.
And FaHCSIA?
FaHCSIA provides a lot of services for carers generally.
They've put into place respite care for mental-health carers.
Their guidelines are very wide.
Their interpretation is fantastic, if you look on the FaHCSIA website.
Young carers really can access an awful lot of help
through their FaHCSIA respite for mental-health carers scheme -
help in the house, tuition, things like playing the guitar - guitar lessons.
Something to give them that little bit of extra to recharge their batteries
to help them care.
Chris, under the radar for GPs?
It is a challenging area.
Rural and remote GPs have an advantage in a smaller community.
They do know the services that are available,
and they do have very good contacts with community health.
This is a hugely challenging problem.
A lot of it is about people coming up with artificial boundaries
that aren't real, but impact on their care.
Patients with a mental-health can't have a drug and alcohol problem as well,
'cause it's two different services that address those.
You can't send them to one unit, you can't send them to the other unit.
These boundaries that are artificial
make life miserable for carers and patients.
What to do about the school, Jo?
They don't tell the school.
There's bullying that goes on.
Bullying, apparently, is quite common in this group.
With everything that's being said,
there clearly needs to be not just health professionals,
but professionals in schools - their own awareness needs to be raised -
but advocating better for greater acceptance for mental-health issues
and to show greater regard and respect for people in such situations.
In a small country town, Chris, could you use your practice nurses?
I get a lot of involvement from councils at schools.
I find them really a helpful part of the team in managing these issues.
They can often put a lot of educational resources into the home.
There's a lot that can happen.
But, absolutely, our practice nurses do a lot,
particularly dealing with mental-health issues for people with chronic disease.
They've got the skills set that makes a real difference to quality of life.
Is headspace useful, do you think, John?
I think headspace is a magnificent opportunity.
There's only 30 sites at this stage,
with funding coming through for up to another 30.
They deal with the very young age of 12 to 26.
They're very focused on early intervention.
They've got a great website which gives great information for young people.
They're also into the technologies of texting, et cetera,
that young people seem to dwell on so easily, it comes naturally to them.
Aside from headspace, beyondblue also have a Youthbeyondblue website,
which has a lot of information, and gives the opportunity to access it.
There are opportunities for access for young people,
but I'd go back to the schools.
The Commonwealth Government over years
have developed a program called MindMatters,
which introduces mental-health training into the secondary education system.
beyondblue have taken that a bit further
and developed a program both in secondary and primary school.
We've now been asked to look at preschool
in terms of developing guidelines for that.
The important hook in all of this is the school.
Chris has rightly recognised that there's tremendous assistance.
I don't want to overload the schools, but they're at the core of this.
If we can bring them in, we can start to get young carers identified
as having challenges in life,
and maybe through the school we can get them to the GP and to help.
The carers that we spoke to,
one of the things they really wanted to get across -
not to the counsellors, the counsellors were great.
They helped tremendously.
It was the ethos in the school.
They needed the school principals not just to understand mental health,
but to understand the issues of being a mental-health carer -
that they might end up late coming to school,
that they might have to have their phone on that day,
that they might not get their homework done.
These sorts of things can encourage bullying within the school,
but also from teachers.
There needs to be an advocacy there.
Doesn't it also go to the point that extra help needs to be given
to the person with mental illness,
or physical illness bringing on mental illness,
so the load of the carer is reduced so they can develop normally?
Definitely.
Seems like the bleeding obvious to me.
It's the proverbial no-brainer, Norman.
Dr Mitchell is laughing because he knows how hard that is in a rural community.
They both need help, is the reality.
The reality is that one third of the people
who need some sort of mental-health service, get it.
Two thirds don't get it because it's not available
or because they don't feel comfortable about seeking it out
because of this stigma, or nobody's given them the access point.
We need to up the ante on the system but also on the access points
so we've got more people pushing in one direction.
Is there risk of pathologising - of making people sick as carers
by pathologising what is, albeit not a normal situation,
but a situation that's part of life for some people, Jo?
The fact that it's stigmatised is a risk in itself.
People see it in a negative light.
If there was more done, which -
beyondblue is doing fantastic work around raising people's awareness
using different mediums.
If we talked more about mental health more as you do diabetes,
people would understand it's a vital organ as other organs,
that sometimes it's struggling and needs medication
and other things to happen for a person to suffer less.
I would argue that a lot of the basics of cognitive behavioural therapy,
if you're not suffering from depression,
it's fantastic training for resilience anyway.
A lot of the skills that we have in treating mild and moderate depression
are applicable to help people cope with challenging situations.
Let's go to our final case study, another beyondblue carer study.
Trish's husband, Rob, developed depression
after being diagnosed with a chronic illness.
Trish describes how she looked after herself during those difficult times.
In the early stages, I don't think I did much to look after myself at all.
If it hadn't been for one very special friend,
I don't think I would have made it.
I didn't go into depression,
but I felt at a few stages
that I might need to see someone and talk for myself,
but I didn't.
It would have been helpful had I.
My saving thing was, I keep a diary.
I've done that for many, many, many years.
I've always kept a diary.
But I wish I'd spoken to somebody professional or some organisation.
I wish I'd done that.
As I look back, I should have. Should have, could have, would have.
That would have been more helpful than struggling alone.
It was only when I got to know beyondblue,
saw what they suggested and the helpfulness they offered,
it was only then that I realised I needed to look after myself.
That's hard.
I like to look after other people,
so to look after myself was a little bit of a new thing.
I would walk four times a week, five times a week.
I found that to be very therapeutic - just to be out there on my own,
just breathing in the air.
That was time out for me.
It took me awhile to realise that my attitude needed to change towards Rob.
He was sick and I was well,
and I was wanting to get on with life.
I had to really keep in check how I was thinking.
My thinking did go bad for awhile.
I could feel myself getting very angry.
I could feel myself resenting, I think,
resenting him being sick
because I still had so much of life I wanted to live.
Once I changed my attitude to one of love and understanding and compassion,
I found I rekindled something that I'd lost along the way.
I'm quite excited at the moment,
because just this year for the first time,
Rob's doing things he's never done in 15 years, I think,
or 13 years maybe.
One day our grandchildren came, and Rob got the guitar out to play.
He hadn't played it for ten years.
He couldn't even do Twinkle Little Star. That's how rusty he was with the guitar.
But he fumbled his way through it, and that was the first time I thought,
gee, he's got this guitar out again.
This is exciting. I was excited.
You want to say, hang in there with them. It's worth it.
They're people of worth.
They don't choose to be unwell, they just are.
There's a chance of recovery, and still a wonderful life to have together.
♪ Beyond blue It makes me realise there is hope... ♪
Trish's story.
A lot of themes we've been discussing tonight echoed there, Jo.
Yes, especially around guilt and what part you play in that.
I want to get down to practical strategies,
things you can tangibly do.
I've heard the message - planning, involvement,
not getting too worried about privacy, getting the rules right.
Let's get down to practical strategies
because people need comprehensive help for their physical and mental wellbeing
when they're dealing with this sort of situation.
What do you think, Linda, from research and experience?
From working with carers at workshops,
it was actually getting down to the nitty-gritty of what made them tick,
getting them to look internally, and what gave them pleasure,
the simple things in life that gave them pleasure,
and finding the time and space on a regular basis to do them,
whatever the circumstances were.
Because without doing those things...
It could be as simple as Trish's going for a walk.
Reconnecting with things that gave them pleasure
was one of the most sustaining things they could do.
We've got a question from a pharmacist in rural New South Wales -
'Are there any carer-support networks in rural areas?'
- Do you know the answer? - No.
There's not very many. How important is mutual support to all this?
One thing that came out from our workshops is -
at the end of them we asked for an evaluation -
what's the most important thing that happened today?
Many, many at the workshops said, I am not alone.
They'd met up with a group of people. They could let their hair down.
They could be honest about their feelings of frustration and anger,
whatever else they felt, without feeling they were letting anyone down.
That mutual support, that peer support, seemed very important.
Support groups have started as a result of getting together for those workshops.
It might just be a cup of coffee once a fortnight with a group of friends.
That's how some support groups are working in rural places.
Somehow, to facilitate that is very important to help people cope.
The local network or division is a great place for pharmacists and GPs to call.
Carelink provides a fantastic service,
and will often be able to hook you into support in the area.
Getting back to what are the practical things to do,
I thought that was a fantastic story about those things.
It's somebody listening, it's increasing your activity,
it's scheduling things that you like, it's reframing, it's straight thinking.
Also, it's identifying problems that need to be solved,
and working through those problems.
I think those stories are what our patients, who are carers, need to hear.
A psychologist in New South Wales asks,
'Why shouldn't carers be routinely included
in mental-health case planning?'
I don't have an answer to that.
I think they should be included in case planning.
Then there would be an issue of boundaries and rules.
You've got to get a shared understanding of information,
but carers are fundamental to the care
of any people with a chronic illness, including mental health.
You've got somebody who's got major depression, John,
who has harmed themselves in the past.
That must strike fear in the heart of a carer,
where they don't want to let this person out of their sight.
No matter how much you say - you've got to go to the support group,
go out and have a walk, cook more healthily,
they'll say, I'm on eternal vigilance
to stop this person harming or killing themselves.
What's the response?
This is the case of tough love, Norman.
We're here tonight talking about this issue, and people are listening to us
because they want to improve health care for people who suffer these illnesses.
If we don't look after the carers, they're going to lose a major resource
in terms of of helping them to provide the professional care to that.
No carer can be 24/7.
Let me tell you, we tried as a family because we knew our son was suicidal.
But you just can't live their lives for them.
As tough as that might sound,
the reality is that they will get under your guard.
At some stage, you'll go to sleep, turn your back, the phone will ring.
Something will happen, and you will not control it.
You can do everything you can, but at the end of the day,
you have to understand that you can't completely manage their lives.
The resources that are available today -
through the beyondblue website, there's a taking care of your family book
which deals with all of those issues like grief and anger and suicide
and family disturbance.
Tap into those. Tap into the carer book.
They tell you you're not alone.
The message for me is listen, hear the message,
include the families in the programming and the planning
and make sure they're supported
because they are the resource that's providing
the overwhelming amount of service in our community today.
Include them in the care process. Linda, you wanted to add?
With carers, it does take time after diagnosis of mental illness.
It does take time for that to settle.
It can be a year, two years,
before they can really take on board the things they need to
about letting go, about taking space.
It takes a long time to come to terms with it and reframe their life
and get used to the new reality of what their life is.
Jo, practical strategies in Aboriginal and Torres Strait Islander communities?
Ensuring that people are enjoying their everyday cultural life
and revisiting what they need to do to become more connected.
Chris, you wanted to add?
I think families often do need permission to take time off.
You need to listen to their concerns about it,
but they also actually need permission
to take a break and recharge their batteries.
A lot of us who have been in the game for a few years can tell stories
about, by having a break, you're going to be there for much longer,
because you're not going to be exhausted and burned-out.
That's a really important message for us to share.
I think it is. And a GP saying that to a carer
is a very powerful thing.
They might hear it from their brother or sister,
but for a GP to say it from a position of medical authority -
it's time you took a break, you can't carry on like this -
might have more impact than a family member.
Thank you all very much. It's been an informative and moving program.
The messages I've got from this are listen, listen,
and when you've got more time, have some listening time. And act on it.
Involve carers in care planning,
and get into care planning as early as you possibly can,
and maintain that relationship.
It is hard in rural areas, but there are resources.
Our thanks to beyondblue, the national depression initiative
for making this program possible, and for providing the DVD,
Carers' Stories Of Hope And Recovery, available from beyondblue.
Thanks for taking the time to attend and contribute.
There's more information about this program and resources available
on the Rural Health Education Foundation's website:
Don't forget to complete and send in your evaluation forms
and to register for CPD points.
I'm Norman Swan. I'll see you next time.
Captions by Captioning & Subtitling International
Funded by the Australian Government Department of Families, Housing,
Community Services and Indigenous Affairs�