Patty Kikos has the pleasure of interviewing Way Ahead CEO, Sharon Grocott, whose daughter Amber, was born with a physical and mild intellectual disability. She was not able to kick or catch a ball or experience feeling on the balls of her feet, but Amber could ride a horse and compete in dressage comps. Despite learning to thrive, Sharon’s family’s lives were turned upside down when Amber was hospitalised at age 22 with psychosis, before being officially diagnosed with schizophrenia. GUEST: Sharon Grocott - https://wayahead.org.au/ SOCIAL MEDIA: Follow Patty on Instagram Follow The Benevolent Society on Instagram Follow Carer Gateway on Facebook Follow The Benevolent Society on Facebook CREDITS: Host – Patty Kikos Producers – Patty Kikos and John Hresc Sound Engineer – John Hresc GET IN TOUCH: Carer Gateway is proud to offer emotional and practical services and support for carers with the aim of making your life easier. You can call us on 1800 422 737 to find out more about peer support groups, counselling, coaching, online skills courses, tailored support packages, emergency respite, other government supports, as well as tips and information, or visit our online home at www.carergateway.gov.au Got some questions or thoughts for Patty or the team? Email us at cgconnections@benevolent.org.au and put ‘Attention Patty’ in the subject line. ACKNOWLEDGEMENTS: The Benevolent Society acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander cultures.
Patty Kikos has the pleasure of interviewing Way Ahead CEO, Sharon Grocott, whose daughter Amber, was born with a physical and mild intellectual disability. She was not able to kick or catch a ball or experience feeling on the balls of her feet, but Amber could ride a horse and compete in dressage comps. Despite learning to thrive, Sharon’s family’s lives were turned upside down when Amber was hospitalised at age 22 with psychosis, before being officially diagnosed with schizophrenia.
GUEST:
Sharon Grocott - https://wayahead.org.au/
SOCIAL MEDIA:
Follow Patty on Instagram
Follow The Benevolent Society on Instagram
Follow Carer Gateway on Facebook
Follow The Benevolent Society on Facebook
CREDITS:
Host – Patty Kikos
Producers – Patty Kikos and John Hresc
Sound Engineer – John Hresc
GET IN TOUCH:
Carer Gateway is proud to offer emotional and practical services and support for carers with the aim of making your life easier.
You can call us on 1800 422 737 to find out more about peer support groups, counselling, coaching, online skills courses, tailored support packages, emergency respite, other government supports, as well as tips and information, or visit our online home at www.carergateway.gov.au
Got some questions or thoughts for Patty or the team? Email us at cgconnections@benevolent.org.au and put ‘Attention Patty’ in the subject line.
ACKNOWLEDGEMENTS:
The Benevolent Society acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander cultures.
Patty:
Hello my wonderful listeners! Make sure you have a cup of tea and a biscuit and you get nice and comfy, because I have wanted to share this story for many months. The stars have aligned and today, I am interviewing an incredible woman called Sharon Grocott who became a carer when her daughter was diagnosed with a physical and intellectual disability a few years after she was born.
Her husband and her younger daughter Gemma also became Amber’s carer and became her circle of support so that Amber could learn to thrive. Not only did she learn to ride a horse in spite of her physical disability, but Amber also competed in mainstream riding competitions with able bodied riders as well as dressage competitions.
BUT. Their lives were turned upside down once again, a couple of years ago, when Amber was hospitalised with an acute mental illness. The family embarked on a brand new caring journey and new learnings when they were schooled in the art of managing psychosis and schizophrenia.
Sharon is the CEO of Way Ahead, which is the Mental Health Association of NSW and has many years of experience in leadership roles in the non-profit sector, even though she has also worked in state organisations and local councils.
From a personal perspective, I want to share that I’ve been a social worker since 1998, and I can tell you, there are not many CEO’s that are as open hearted and accessible as Sharon is. She is down to earth, she is gracious and kind, and she is so generous with her personal experience.
Sharon you were the 1st graduate of the first social work course in Victoria – it was in the western suburbs of Victoria and it was a big political move at the time. While you were at Uni you worked as a disability support worker in group homes, in respite and in palliative care. And that didn’t scare you off from completing the degree?
Sharon:
No, I absolutely loved it. I actually went on to work at Centrecare for many years, providing respite and also disability support.
Patty:
Your brother and cousin have dyspraxia. Dyspraxia is a neurodevelopmental disorder of movement and coordination in which messages sent from the brain to the muscles are interrupted. Your brother had years of OT and speech therapy and back then it was considered new but you were actually a young carer, weren’t you?
Sharon:
Yes, definitely. Dyspraxia actually causes messages to get mumbled and jumbled and it causes short term but not long term memory loss. I was essentially a young carer, but the term young carer didn't actually exist back then. Seeing my brother and cousins struggles definitely impacted my decision. To become a social worker, mum was working and Dad was working and studying, so I looked after my bro.
Patty:
What's the age difference between you?
Sharon:
We're six years apart.
Patty:
You're older?
Sharon:
Yeah, yeah.
Patty:
Yeah. I mean, how did you handle that? I can't help but think that this would have been a contributing factor to you then going on to have quite a number of leadership roles in your future.
Sharon:
Mum said that I was really fiercely independent, but it also made me very mature for my age. Becoming a young carer essentially made me wiser beyond my years. I can also see the same with my youngest daughter, Gemma. I was working in management roles. I was even acting supervisor of a group home at 19 years of age.
Patty:
Wow, that's impressive.
Sharon:
And I had my first big management role at age 30, so I was working in Community services, but I think leadership takes many forms. Even in my early 20’s, I was advocating for disabled access at Greenway Housing Estate, and I got a lift placed at Milson's Point station.
Basically, I placed the Transport Minister under pressure to add more disabled lifts in railway stations all around New South Wales.
Patty:
How old were you?
Sharon:
At the time I would have been about 25 at the time.
Patty:
Wow, that's extraordinary. Well, you then had Amber, who also has dyspraxia. And from what I understand, it took a few years for her to be diagnosed at 4.5. I think you said that the OT diagnosed it, and this makes sense as it runs in the family because your brother’s children also have it. When did you realise that Amber had a physical disability?
Sharon:
Amber actually didn't walk until she was about 2, and she had “failure to thrive”. She also had a lot of challenges, such as, you know, difficulty swallowing and difficulty with eating. So, we knew when she was really young that there were some issues happening.
Patty:
Is the term “failure to thrive”, a medical term that has been coined?
Sharon:
Yeah, it is. Often when you go to a pediatric specialist, they will often determine there could be failure to thrive based on lack of weight gain or not meeting developmental milestones, so Amber wasn't meeting a lot of those developmental milestones.
Patty:
Yeah, I see. I mean, Amber's physical disability was and to some extent still is hidden. She has low muscle tone and sensory issues and cannot feel under the balls of her feet, yet she can ride in dressage comps.
She also struggles with her fine gross motor skills and her coordination. So, for instance. She can't catch or kick a ball, but she can ride a horse. Now, at the time you were in charge of managing her NDIS, as she was a participant since the NDIA's inception, as well as advocating for her school or at her school and in the community. What was your life like as her primary carer as she was growing up?
Sharon:
I was her main carer. I was also Amber's advocate at times. I did find the medical system could sometimes be quite patriarchal.
Patty:
What do you mean by that?
Sharon:
At times it was almost like, you know, you were told what advice you were told by the pediatrician or the specialist that “I'm the expert, and this is what you need” or “this is what you should be doing” rather than actually hearing a whole picture of the person. It was sometimes very narrowly based more on their medical opinion but not looking at someone holistically.
Patty:
And at this stage, were you also working while looking after Amber?
Sharon:
Yeah. So, I've always worked. I've always juggled, you know, being able to be a carer plus working in prettyfull-on jobs, over the years, always senior management or exec type roles right over the last 20 years. So yeah, I juggled a lot.
Patty:
And so in addition to the medical system being quite righteous and potentially patriarchal, what else was going on for you at the time?
Sharon:
We had a lot of struggles with the school. We went through 4 different schools when Amber was in primary school and at the time, we found there wasn't the right level of support, so it was either a mainstream school with limited support, or we looked at a special school and neither really could fit. So, we had a lot of trouble.
Patty:
What were the pros and cons with, say for example, a mainstream school with very little support versus a special school with an abundance of support?
Sharon:
So with Amber's needs, she had a mild intellectual disability, so a special school really didn't quite fit. It was more for children with with moderate to severe intellectual disabilities.
Patty:
Right, I see.
Sharon:
While the challenge for the mainstream school, was that she could fit quite nicely into a mainstream setting, but they just didn't have the teacher training or the resourcing.
Patty:
Or teachers' aides I'm imagining.
Sharon:
They didn't have teacher’s, aides in classrooms, so there was limited support. It was pretty much Amber was left to just, you know, be a small fish in a big fishbowl, so, it was really a struggle at times.
Patty:
I see. So, is that what inspired you to get involved in a lot of the advocacy?
Sharon:
Yes. Now I recognise that there were a lot of gaps in the education system, so I became involved as a Disability Advocate for the NSW Parents Council for close to 6 years and within that time, I also sat on the Australian Curriculum Assessment Reporting Authority. So, they had a national disability advisory group.
Patty:
OK. So first of all, I didn't even realise there was a NSW Parent Council. And then you're saying they had an advisory committee? Can you tell us a little bit more about that?
Sharon:
Sure. So, part of my role was influencing changes to things such as having special consideration for students with a mental illness, or students with disabilities for exams, it was around providing more resources and supports for teachers around special education.
Patty:
What kind of considerations for exams?
Sharon:
So, students could have extended time. We could have things like the ability to listen to music and calm themselves. For students that have anxiety.
Patty:
OK.
Sharon:
So, it meant that there could be considerations to basically enable the students to be at their best when they were completing an exam.
Patty:
And were you also advocating for extra funding for teachers’ aides?
Sharon:
Yes, definitely. Resourcing and teachers’ aides as part of it.
Patty:
How were you doing that?
Sharon:
I think the main thing was influencing so being able to sit around the table with key people even when I think about it, the NSW Board of Studies and people like Tom, the President and at the time, and being able to influence those people in terms of, you know, what are the real challenges.
I was also speaking from the perspective not just of a parent, but seeing the strain that teachers were under as well, and some of the stresses that teachers were going through.
Patty:
Was there just a lack of support?
Sharon:
Yes and having to be everything to everyone in a classroom.
Patty:
Which seems to be growing as we progress in years. Yeah. So, I mean, there was an opportunity to stir things up and to create change.
Sharon:
Yes, when I started with working in that advocacy role at the time, about 68% of children with disabilities were mainstreamed. When I actually finished up, Amber had finished school and I saw there'd been a major shift. So it was sitting around 98% of children with a disability being mainstreamed.
Patty:
When you say, “being mainstreamed”, you mean children with a disability being able to attend mainstream schools because mainstream schools could cater to what their special needs were?
Sharon:
That's right. So rather than children having only have the option of a special school, a lot of the schools were setting up support classes where they had teachers, aides, teachers that had special education training and they could fully participate in the school curriculum as well.
So there was a huge shift, although having said that, there's still quite a bit of work that needs to be done with the education system and I feel that teachers do still need a lot of resourcing training and support.
Patty:
How do you think that we can help to implement this or influence this to actually occur sooner rather than later?
Sharon:
I think schools are about resourcing, so best intentions, I think that teachers are amazing. I take my hat off to teachers, but I think that a lot of schools are still really under resourced. Yeah, and now they're not just working with students with a range of disabilities, they're seeing a lot more mental health in classrooms. So, they're seeing, you know, children with anxiety. You know, children that have a lot of other challenges. So, it's really about resourcing teachers.
Patty:
Yeah. Do you think the vernacular has changed enough or adequately enough in society that people are familiar with terms that many years ago wouldn't have been even considered?
Sharon:
I think so. I think that in schools, what I tend to be seeing, even in the work that I'm doing at the moment at Way Ahead, is there's definitely more conversations about mental ill health. There's really been a shift in in stigma in schools.
I think schools are really at the forefront in terms of having conversations about mental health and about support and help seeking behavior. And I can see a real shift happening within the education system in terms of wellbeing becoming a real focus and really authentically and genuinely having a commitment to wellbeing in schools.
Patty:
That's reassuring to here. Now you had a child with a physical disability and a mild intellectual disability. I know that some medical terms had tried to suggest that Amber had an intellectual disability that was more moderate, but you argued strongly against this. Can you share why?
Sharon:
Sure. I think when I look at the assessments such as we had, which was the WIS, which is the Weschler Intelligence Scale, I think these assessments really only provide a snapshot of a person. It doesn't really capture the whole person and it's at a point in time as well. So, I think that intelligence is an interesting thing.
Patty:
Certainly. Yeah. It's a little bit like the K to 10 questionnaire where you've got the option to answer none of the time, a little of the time, some of the time, most of the time or all of the time, I mean that can vary in times of day depending on how you're feeling, depending on how busy or stressed you are. Yeah, I understand. And do you feel that carers are asked enough questions?
Sharon:
I don't actually. I think sometimes carers can be a really good point of oversight for their loved one. And often, you know, carers aren't asked the questions and really they day-to-day observe.
They see what's happening for their child, and sometimes they're overlooked. Even in the mental health system. We can monitor, we can actually observe changes. We can see signs and indicators that perhaps our child's mental health is going downwards.
We can actually be there to coordinate to, to organise appointments, to be observers and report back to specialists what we're observing. And we can really be vital as the safety net and the support wrap around for our loved ones.
Patty:
And the bigger context that's more layered.
Sharon:
Yes, absolutely. And we see the more holistic view of a person we're able to actually see a person for who they are.
Patty:
Were you taken into consideration by specialists when you were asked about Amber's care?
Sharon:
In the mental health system, in the public system, not so much. I found I was very surprised that carers were seen at arm's length, that my experience wasn't that carers were acknowledged and being involved in the treatment plan or the care plan. So that surprised me.
Patty:
I mean, 2 years ago your worlds were turned upside down. And when I say “your” worlds, I'm referring to your family. When Amber was 22 and when the psychosis first began, can you unpack what happened with us?
Sharon:
Sure, Amber, actually after COVID in 2021, became really acutely unwell, so she started to try and self harm. Particularly she was having suicidal thoughts.
Patty:
And when you say acutely unwell, can you define that term for our carers who might be unfamiliar with it?
Sharon:
Sure, she was very agitated, very upset, just not herself. Very distressed, she was hearing a lot of voices, but also had some thoughts around paranoia, so losing her identity, feeling that someone had taken her identity, like her Facebook page was being hacked, her bank accounts were being taken over so there was a lot of thoughts that were really confusing for her.
Patty:
Sounds like they were intrusive as well.
Sharon:
Well, yeah, very frightening for her having these sorts of thoughts and you know, not reality in terms of what was really happening to her, but it was really concerning. She was out of sorts with her personality and was very distressed, you know, often agitated pacing, and just didn't seem herself at all. And that's when we realised that Amber was experiencing psychosis.
Patty:
And that's how it showed up for Amber? Because psychosis can show up very differently for different people.
Sharon:
Yes, it can, and often overtime there's a decline in mental ill health. But with Amber it was actually quite a sudden change. And so, it was over a weekend when we just noticed a big difference in what was happening for her.
Patty:
Yeah, and did you choose to keep her out of hospital.
Sharon:
We did. At times we were in emergency for hours on end, very concerned, particularly around her distress. At the end of it, we ended up taking Amber home. She actually didn't want to be admitted, so we couldn't sort of force her to be admitted to hospital.
But in the end, in hindsight, it was probably a good thing that we kept her out of hospital and we managed to manage her at home. We looked after Amber. Even in an acute state, there was one point where I didn't sleep for five nights. I was up with Amber, just trying to help manage the symptoms.
Patty:
The pacing, and the intrusive thoughts?
Sharon:
Yeah.
Patty:
You've mentioned that her voices can be very challenging for her as well.
Sharon:
So sometimes the voices can have quite a bit of what we call a “bite” that can actually be quite nasty. So telling Amber things about herself that she's not good enough. That she needs to self-harm things like that.
But at other times the voices can actually be quite positive, so they can actually make her laugh. They can challenge her in positive ways. So, I balance it out because sometimes the voices can actually be positive. It's not all negative.
Patty:
How do you respond to Amber or how do you support her when the voices are quite nasty and are really frightening for her?
Sharon:
We have lots of tools and strategies that we use, so Amber is lucky that she sees a psychologist who specialises in psychosis. So, things like turning the voices into funny voices, making them sound for her like Daffy Duck. And then it makes her laugh, but it takes the bite out of the voice.
Patty:
And the power out of them.
Sharon:
That's it. It takes the power away. It also makes her feel that she's more in control, of course. And lately the latest technique is using audio books. So, for distraction and helping her divert her thoughts.
Patty:
Right, right. And at the time, especially when she had become acutely unwell, were there any other things that you had to do to be vigilant in the house to ensure her safety?
Sharon:
We were very vigilant, bit heightened and we're quite conscious of that as a family too that we are aware of not becoming too heightened again, but at the time we had to remove all sharp objects, for example knives, in the house.
We were also conscious of medication lying around amber at one point. Amber was holding on to some medication in her room. So we had to remove Panadol and Nurofen and just be vigilant, I guess. And look at her safety and keep a regular check out of 10 around how unsafe she was feeling.
Patty:
Yep, got it. One of the challenges you've spoken about was when your husband Rowan struggled to accept Amber's diagnosis, do you think this might be because he thought that by taking medication, she would automatically become better?
Sharon:
I think generally speaking, and I don't mean to stereotype, but I do think sometimes men particularly like to ‘fix things’. And I think that happened with Rowan, because it's not a physical illness, you can't see it. It's really hard to navigate sometimes. And I think the idea of trying to fix and just to have his Amber back. That was Rowan was saying. He just wants his amber back.
Patty:
Yeah, it is a challenge when it's not physical and you can't see the illness because it's harder to navigate. He's become her primary carer so that you can return to work because you can't both have a full time demanding role. Is that correct?
Sharon:
That's correct. Rowan stepped away from work back in November so that he could become Amber's Primary Carer. And I've actually had to learn to withdraw a bit and step back. So, I have had to learn not to, for example, micromanage on Ambers, NDIS plan.
Patty:
Because you were doing it for so long, and he may have created a system that's different to yours.
Sharon:
But he's been fantastic. He's been, you know, putting his own systems in place.
Patty:
That worked better for him?
Sharon:
That's right. And he actually improved my spreadsheet.
Patty:
Ohh wow. Go Rowan.
Sharon:
I'm quite impressed.
Patty:
It's a good thing to hear you say that because it's inspiring for other carers to know that they can step back, because one of our concerns is will someone do it as well as we do, or maybe they won't get it right the first couple of times. But we need to not hover and helicopter parent them as well, don't we?
Sharon:
That's right. And in fact, it's probably, I can say, deepened his relationship with Amber. Yeah, it's actually given him this real deep empathy, understanding, compassion, patience.
Patty:
You know, I'm really grateful to have Gemma, your other daughter, Rowan, your husband and of course, Amber's blessing for you to share your stories. Your family story of learning, unlearning, caring, supporting and above all building resilience.
I know that Amber also struggles with the sting of the stigma of being labelled as someone who has schizophrenia, and I I've got to say, I can't blame her. The media are not supportive in their misreporting and the vernacular that's still used today with phrases like “he or she schizzed out”, which are less than helpful.
Sharon:
Yes, definitely less than helpful. And the way I see things with Amber is she's an incredible and extraordinary person. She still manages to advocate for herself. And in fact, I see that the mental illness doesn't define Amber. It doesn't define her as a person.
Patty:
That's amazing. And when she advocates for herself, how does she do that?
Sharon:
Amber is definitely a strong personality. I have seen her basically say when she disagrees with something. So, an example was going into hospital. She didn't want to go into hospital, so we respected that we could see that you know it was Amber's choice, her decision.
The other one that has popped up recently is the medications that Amber is on. So, Amber had the option to try a different drug called ‘Clozapine’, but she has decided herself that she will remain on the current drug that she's on, because there are a lot of risks with clozapine. She weighed that up herself. She made the decision, and we supported that.
Patty:
That's great. It's important that she has agency and that she feels empowered in this scenario.
Sharon:
Definitely no, she definitely does have quite a mind of her own, which is wonderful. And she does make decisions herself, which is really important.
Patty:
When it comes to navigating the mental health system, do you have any helpful tips for our carers as well who might be in a similar position?
Sharon:
Sure. One of the things I learned really quickly with wait times was that if you actually go onto a cancellation list rather than a wait list, so going on to a cancellation list for a psychiatrist, you might get in earlier.
Patty:
Good to know.
Sharon:
So that's a really good tip. The other one I learned too, I quickly discovered. If you do go through a private hospital, you can actually then get allocated a private psychiatrist. However, as we know, many families can't afford private health insurance.
And the other thing I learned, which I didn't realise until the time, was that health funds actually offer a one-time opportunity to up membership. So, you can go to gold level for psychiatric care in hospital without a waiting period. So that's really worth knowing.
Patty:
Did you do this for Amber?
Sharon:
I did! We upped her Medicare to gold level just in case as a bit of a back up.
And then I found also that ‘One Door’, which is a great mental health service, I found they have so many good resources, a very great contact for carers. And I'm a really big fan of their work. I've connected with them over the months.
I also found Psychosis Trust Australia has some really good information, and really great research. And I joined the Hearing Voices Australia Facebook page. I found that a lot of the tip's and resources are from people with lived experience but really practical, helpful sorts of information for carers.
Patty:
This is really vital information that you've just shared, and for those that are listening on Spotify or any Apple Podcasts, if you go to the SimpleCast website and listen through that, we actually offer a free transcription of the episode. So if you haven't managed to write it all down, you'll get the opportunity to do so through the transcription.
Let's talk about the other gem in your life, Gemma, who was born some years after Amber. Now she was a young carer herself who always supported her sister and of course continues to do so. I know you've told me that she's currently studying to be a music teacher and she's got a desire to work with children with special needs. In fact, you've also told me that in order for you and Rowan to get respite, the only way that this happens is if Gemma looks after Amber. Is that correct?
Sharon:
That's correct. At the moment, Gemma is really our only source of respite. And we have tried some disability support workers, but we found it was really difficult to find a worker with mental health experience or one that was available and reliable, particularly for casual hours. It's really challenging to find good support workers.
Patty:
I suppose the quality assurance kind of things might be tricky as well.
Sharon:
Yeah, that's right. And the problem is, once you find someone great, we had a fantastic support worker, but she ended up getting a full time job, so she moved on. So, it's really hard to find people that are available for that continuity of care.
Patty:
And with a specific skill set that is required.
Sharon:
That's right.
Patty:
What are your future plans to ensure that Amber is financially supported once you and Rowan are no longer here?
Sharon:
Yes, this is a challenge and one that we're constantly thinking about at the moment. Yeah, it's I guess at the point now where we're talking about getting financial advice and setting up a trust for Amber. But also Gemma. We've had conversations and she really wants to help manage the situation and she is willing basically to help with caring for Amber in the future.
Patty:
It's a lot to put on someone.
Sharon:
It is, and sometimes I feel quite guilty. She's only 18 years of age. I think that's a lot of responsibility. That's a lot of maturity that she's had to have beyond her years, so it does weigh heavily sometimes.
Patty:
Yeah. And I bet it this is gonna be an ongoing discussion that you have with her?
Sharon:
Yes, definitely.
Patty:
Sharon, you are amazing. I think as your reward, we need to do some rapid fire wrap up questions. What do you think?
Sharon:
Sure sounds great, Patty.
Patty:
Alright, if you could meet any living person for dinner, who would you pick and why?
Sharon:
Sure. I would love to sit down with the new Minister for mental health, The Honourable Rose Jackson. I would really like the opportunity to share my experience, but also the experience of many families that I'm aware of that have challenges, but also the positives about the mental health system.
Patty:
If anyone's listening and knows her personally, please do forward this episode to her. Would you rather be invisible, or would you prefer to read mines?
Sharon:
Yes, I would rather be in tune and read minds so I can help more people.
Patty:
What skills do you think everyone should have?
Sharon:
Definitely empathy. Being able to put yourself in other people's shoes.
Patty:
Hmm, that's a good one. Actually, this one's going to be interesting to hear. If you had to delete all but 3 apps from your smartphone, which ones would you keep? And you can only choose three.
Sharon:
OK, I definitely would not delete ‘Next There’ because it's my go to for coordinating buses and public transport. I love networking, so LinkedIn would definitely stay, and I also count my steps each day, so I have a fitness app which I would be lost without.
Patty:
Do you walk every day?
Sharon:
I do.
Patty:
Is that your solo time?
Sharon:
Yes. It's my time to think, it's my time, as I call it, filling my cup. Yeah.
Patty:
Yeah. Would you rather be the funniest or the smartest person in the room?
Sharon:
Room. I would definitely rather be the smartest so I could help solve complex social problems like mental health.
Patty:
And if you could learn one new word that would change your life, what would it be?
Sharon:
Well, this was a challenging question, but I discovered recently in Japan that they've changed the word for schizophrenia.
Patty:
Really?
Sharon:
Yes, they've actually created a new word. Because previously the word meant sort of mind split disease and there was a lot of stigma with the words. So, the new term and excuse my Japanese but, “Togo Shitcho Sho” actually means ‘integration disorder’, which refers to schizophrenia being able to be treated, and it emphasizes that recovery is possible, and it has a much more positive strength-based meaning to it.
Patty:
That is my favourite question that you've answered Sharon. You are amazing. Thank you so much for coming and joining us today.
Sharon:
Thanks, Patty.
Patty:
If this was helpful for you, we’d love you to subscribe and give us a 5 star review, but more importantly, to share this episode with someone who you think can benefit from listening.
Sharon runs many focus groups at Way Ahead and she is saddened by how much stigma is associated with mental health. Much of their information is anxiety specific as well as practical support and crisis management strategies and referrals to general mental health services.
Way Ahead have a phone line that they operate and provide a broad range of information and services, including referrals to the Carer Gateway. That number is 1300 794 991 and their website is www.wayahead.or.au. If you’re not based in NSW, give them a call so they can let you know who your state or territory counterpart is.
Til next time, take good care of yourself!