When her daughter Amber was diagnosed with schizophrenia and psychosis alongside lifelong disability and complex physical health challenges, Sharon’s role as a mother became something more — a carer, an advocate and a voice when her daughter could no longer speak for herself. Patty Kikos speaks with Sharon about the emotional weight of caring, the guilt that many parents carry, the exhaustion of advocacy fatigue and the moments when love, hope and resilience are tested. She shares what it means to fight for better care while learning that even the strongest advocates need support too.
Content warning: This episode discusses mental health crises, hospitalisation and family trauma. Listener discretion is advised. This podcast is for general informational purposes and isn't a substitute for professional mental health advice or treatment.
Disclaimer: The views, language, experiences and opinions shared by guests on this podcast are their own and do not necessarily reflect the views of Mental Health Carers NSW (MHCN) as an organisation.
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Jonathan
MHCN acknowledges the Traditional Custodians of Country and pays respect to elder’s past, present and emerging. We are the peak body for mental health carers in New South Wales, and we advocate for carers rights and systemic reform.
Jonathan
Caring Between Minds. Mental Health Advocacy in Action.
Patty
This episode discusses trauma, caring and lived experiences. Please listen at your own pace and reach out to support services if you need to.
Sharon
Amber couldn't kick a ball, but she could ride a horse and not just ride. She competed in state equestrian events alongside able bodied riders. Then at 22, everything shifted. Amber was diagnosed with schizophrenia and psychosis. And honestly, it felt like the universe was saying, you're already qualified as a carer, but we'd really like you to have a PhD. So here are some mental health modules to complete the qualification.
Patty
We should really be calling you Dr Sharon Grocott, shouldn't we?
Sharon
We should! (both laugh)
Patty
When Amber was admitted in April 2025, was that finally a relief or another version of hell?
Sharon
It was another version of hell. I would describe it as rock bottom.
Patty
Some people don't exactly choose caring. It's something that finds them early and never really leaves. This is a story about what happens when caregiving isn't just a phase but has become part of your life. Today's guest grew up supporting her brother and cousin from a young age and learned to notice what other people missed, and to step in when needed.
That same role carried through into motherhood. When her daughter Amber, was born, with additional needs that became increasingly complex over time. Schizophrenia and psychosis were already reshaping her family's world, and then, over 200 public hospital psychiatrists walked off the job in New South Wales, leaving families like hers with even less support. Sharon Grocott is the CEO of Way Ahead, which focuses on mental, awareness and support.
But she's also a mother and advocate, who has had to learn that special language of hospitals, medication, crisis and bureaucracy, all while holding her family together. I'm Patty Kikos, and this is an episode about resilience, responsibility, and what it really means to keep showing up, especially when the system doesn't always meet you halfway.
Sharon
I care for my daughter, Amber, who's 27 years old. She has really complex physical and mental health needs, as well as an intellectual disability.
Patty
Sharon, before we get into everything, can you tell us how caring became such a huge part of your life?
Sharon
Caring is in my blood. I actually grew up supporting my brother and my cousin, both of whom had dyspraxia. So, from a young age, I was already in that role. When Amber was really little, initially, she was described as ‘failing to thrive’. It wasn't completely unfamiliar, but it quickly became clear that there was something more going on physically. And despite those early challenges, she absolutely defied expectations.
Despite being diagnosed with a mild intellectual disability and a physical impairment. Amber couldn't kick a ball, but she could ride a horse and not just ride. She competed in state equestrian events alongside able bodied riders. Then at 22, everything shifted. Amber was diagnosed with schizophrenia and psychosis. And honestly, it felt like the universe was saying, you're already qualified as a carer, but we'd really like you to have a PhD. So here are some mental health modules to complete the qualification.
Patty
We should really be calling you Dr Sharon Grocott, shouldn't we?
Sharon
We should! (both laugh)
Patty
What do we now understand about Amber’s condition?
Sharon
Amber is now being seen through the NeuRA clinic at Prince of Wales Hospital, which specialises in complex neurological conditions. They believe she has mitochondrial disease, which means the cells in her body don't produce energy properly. And that has a huge impact on neuro psychiatry. She also has diabetes, heart disease has lost about 75% of her vision, and some of the hearing.
It's believed that she was born with this condition and it's progressive. Doctor Carolyn Sue, a neuro psychiatrist, has been involved in her care and identified unusual features in her now set of symptoms that are present. There's trauma, but there's also psychosis, and a confirmed genetic marker for mitochondrial disease all interacting together.
Patty
I've got a question for you. Is there a direct link with mitochondrial disease and schizophrenia?
Sharon
There is. So, there are research papers that talk about the link between mitochondrial and schizophrenia. And there's also a lot of evidence around the neuro psychiatric implications. But Amber also has some trauma as well. So, it's also complex in that there's an organic cause for it. But there's also trauma which is also a secondary cause of her psychosis.
Patty
Do you know what her trauma is related to?
Sharon
About five years ago, Amber had some significant bullying that happened through social media, and she was quite traumatised by it. It happened in the workplace. And what coincided was the Covid lockdowns for months on end, as well as a relationship that broke down. She had a boyfriend at the time. So, I think everything just coincided together and combined with earlier bullying that she experienced in primary school, it just really had that sort of snowball effect.
Patty
Would it be something that would be described as a psychotic break?
Sharon
More or less, yes. She more or less had a breakdown and ended up, you know, not in a good state. She was really quite depressed as well. So, it was a time where I think everything just coincided. She had a severe infection of urinary tract infection as well.
Patty
Yeah, a UTI. Is her psychosis similar to what we know presents with drug induced psychosis?
Sharon
No, I think it's very different. Amber does hear multiple voices through the day. Sometimes she doesn't even remember responding to them, but she's interacting with them constantly. Sometimes the voices can be quite supportive and kind. At other times it can be really distressing, especially when she's tired or stressed out. Like when she had eye surgery.
So, stress seems to be a major trigger for her voices, and also the time of day. So around 5pm, she starts to decline, and we often refer to it here as the witching hour, where she really finds it difficult at night. She often paces; she can't sit still. She tries to drown out the voices, sometimes by speaking louder. At times she actually believes the voices can be real. Other times she knows the voices are outside her head.
When she was off medication, it was really significantly worse. On lower doses of medication, she at times became quite paranoid and she'd experienced visual hallucinations. You know, she thought she was seeing snakes outside the window. At one stage it was quite funny. She thought there were mermaids in the swimming pool, so there were some funny sides of it. But sometimes it was quite unpredictable and scary. I think drug induced psychosis is quite a different scenario. Obviously, with the ice epidemic, you know, when people are using drugs over a period of time, they can develop permanent psychosis. But it seems to present very differently to what Amber experiences. So, some similarities. But yeah, it's a very different thing.
Patty
And sometimes a permanent drug induced psychosis can come from smoking pot as well. It's not just the ice epidemic; it's been around for a long time. What have you experienced within the hospital settings Sharon?
Sharon
I think the biggest issue that we find is the one size fits all approach. So, you can have someone who is physically vulnerable, like Amber's very vulnerable, she has a visual impairment. But they’re placed in the same environment just is with everyone else. So, it doesn't matter if you're experiencing drug induced psychosis and you might be a little bit aggressive, because of the effects and have those behavioural issues compared to someone like Amber, who was in hospital for titration of clozapine. And it's quite overwhelming and frightening. So, the same sort of rules of, I guess, apply to everyone.
Patty
I can imagine how frightening that would have been for her. Let's go back to December 2024. What was significant for Amber back then?
Sharon
Yes, Amber had really cute psychosis. She really urgently needed a bed, and we had a couple of stints in emergency where she was in there up to 24 hours over a couple of days. I think even with the documentation and the adult mental health team advocating, she still wasn't admitted. So, she was actively, I guess, rejected from a bed because they just were no beds. So, they didn't have any beds at the time.
And though understaffed, they weren't willing to take a risk and start clozapine because they were worried about the staffing levels. But, I mean, Amber was actively hallucinating. She was really distressed, really unwell. We ended up starting a small dose of medication back onto olanzapine, because we were so concerned about her distress level, so we did that to try and stabilize her. And also, just that duty of care, you know, the dignity around her safety and how distressed she was.
Patty
Why did the psychiatrist strikes happen in New South Wales and what did that look like for families especially, such as yours?
Sharon
Sure. I think, you know, at the time there were workforce shortages and people walked off the job because of low pay. But it wasn't just about low pay. It was also about safety concerns, and the fact the psychiatrists felt that they couldn't provide the quality of care to patients.
Patty
It's that because they didn't have enough psychiatrists that were employed within the different hospital settings? And that therefore created a safety concern and issue?
Sharon
Yeah, there were workforce shortages and there was a reliance on registrars as well, who really aren't qualified they’re in training. And it wasn't fair because the registrars were left to make complex decisions, which they couldn't make. So, I think it was around quality. It was around the fact that psychiatrists were concerned about safety. So, it was bigger than a pay issue. But what it resulted in was delays, no beds and families having to manage crisis situations without proper support.
Patty
And for those that aren't familiar, a registrar is someone who isn't exactly a qualified psychiatrist yet, so they can only operate under someone who is qualified. And that also means they can't prescribe medication. Is that correct?
Sharon
That's right. They usually… I mean, in our case, they couldn't make a decision about Amber’s medication. And we were really concerned because she'd been off medication for several weeks. So, I had to basically make a call that we would put her back on a low dose of medication. But yeah, they're not able to really make decisions, which makes it really challenging.
Patty
What was it like caring for Amber at home during those acute periods? I mean, I'm imagining that you would have been functioning on very little sleep.
Sharon
We were! So as a family, we were sort of averaging maybe 4 hours sleep. We used Valium at times to help manage Amber's sleep and also the agitation that she was feeling. But often it wouldn't work. It wouldn't kick in until 2am. And Amber just had no insight at the time into how unwell she was. It made it really difficult for us and Amber. And then putting her into hospital then for three months was one of the most difficult decisions that we ever made.
Patty
When Amber was admitted in April 2025, was that finally a relief or another version of hell?
Sharon
It was another version of hell. I would describe it as rock bottom. So, over the years, I mean, Amber’s had multiple lung admissions. I'm talking, you know, 4 to 6, maybe 7 weeks. But I think, yeah, for us it was a really tough decision. It was also quite a shock actually, seeing how the system actually treats people. What actually happens in the inpatient units.
Patty
What did that admission look like to you as a family?
Sharon
Well, to start with, we actually had to stay with Amber 24/7 initially. So, the hospital for some reason, thought that we wanted to be there 24/7. There was a miscommunication, apparently not between us, but between some staff. Rowan was actually staying from early morning till night, and he was just exhausted and burnt out.
The facilities aren't exactly that comfortable for carers, so often you're sitting on the bench seats that are rocks, you know, hard in the rooms. Amber would often just stay in her room all day. So, I would say that Amber characterised her experiencing the inpatient unit as comparable to being confined in a prison, and we felt like we were confined in the same prison. So, it was really difficult.
Patty
And for those that don't know, Rowan is Amber’s dad, your husband, and I know you relieved him at night. Can you talk about the food situation? Speaking of that parallel comparison to prison?
Sharon
Sure. So, I think the food overall was probably the most distressing because it was the only thing to look forward to for Amber. And we discovered the patients were actually served the last in the hospital. So, they got the leftovers basically.
Patty
The sloppy seconds, the sloppy thirds even!
Sharon
Yeah, the sloppy thirds. Exactly! And it was literally sloppy. I mean, it was soggy pork sandwiches with apple sauce, if you were lucky to get a trolley with some sandwiches at 8 o clock. And that was for those that didn't eat their meals, which generally most people didn't, because they ended up with leftovers.
So Amber was served, you know, corn, rice, a couple of peas. For the first few weeks, she had these steamed frozen fish because they'd always run out of meals. So, it was really unreliable. And a lot of the patients, including Amber, were getting really upset. People were literally crying at the food trolley.
Patty
You know, at the best of times, food is something that all of us look forward to, but especially when you're a patient inside the hospital. And I know that so many would have been crying because they couldn't eat what they were given and what they needed. I know you were advocated around that. What did that involve?
Sharon
We did. Amber and I actually contacted our state and federal member as a backup, in case the hospital didn't see reason and agree to rotate the food schedule. And I actually escalated it to the minister's office. So, I had taken some photos of Amber's plates to show what it was like. And you know what she was being served.
Eventually they did agree. The hospital agreed to rotate the food schedule, but you know, there were all sorts of issues. I mean, people weren't being served food that they would eat. There were cultural issues, like if you were vegetarian or halal, for example. But I think the food situation eventually, thankfully, they agreed to improve it.
Patty
We smuggling anything else? I mean, in keeping with the prison parallel example. (both laugh)
Sharon
I did have to come clean and did meet to the Nursing Unit Manager that we smuggled some socks in. Because one of the patients who was about Amber’s age didn't actually have socks, and his feet was so cold that were blue. It was winter, so we had to ‘fess up that we had smuggled some brand new socks in for this, this young man.
Patty
A different type of contraband. (both laugh)
Sharon
Yes, definitely. He was very pleased with those socks. I have to say.
Patty
Were there any positives in the system, Sharon?
Sharon
Look, there were positives. I mean, the staff are very caring, very compassionate, particularly the nurses and the Allied Health staff. And one of the OT’s was so lovely. I mean, he even organized a weekly barbecue for people. So, the staff were definitely the positive.
Patty
What were the challenges around discharge?
Sharon
Yes. Well, what discharge!? There literally was no discharge plan! Amber had about a one hour notice and it was a Friday. So, we were told that we could get clozapine from a local chemist. And we quickly discovered that we could not, that it was only dispensed by the hospital pharmacy, and Amber had to have blood tests. And there's all these rules about getting clozapine.
So, it caused a lot of stress. Rohan had been out and about to different pharmacies to find that they were rules and restrictions. So yes, that was a bit of a nightmare to be honest. In the end, we were able to get some clozapine for a couple of days as an emergency. But yeah, it caused a lot of family stress.
Patty
You talk about the rules and restrictions, and I know that one of them is that it can only be dispensed through a hospital pharmacy at specific times, so not on weekends and only after blood tests. You started clozapine. Were you hesitant to do so and why? Maybe you can even explain what it is for those of us that aren't that familiar.
Sharon
Sure, there's a lot of risks that come with clozapine, so that's why they like to sort of administer it in the hospital. So, there's risks like heart complications, it can affect your immune system, so white blood cell count. Basically, your heart can stop, your blood pressure could drop, and you could drop to the ground.
It's fairly serious. And they needed to do constant monitoring with Amber. But she describes it now as being on probation, because we now go through the Clozapine Clinic. But I guess it's that balance, isn't it? Like robbing Peter to pay Paul. If it helps Amber, it's worth the stress. But it was definitely quite worrying.
Patty
And the dispensary must be like her parole officer.
Sharon
Yes, they’re lovely people, but yes, it is like being on parole, she tells me.
Patty
How has Amber's physical health been impacted? Because I do know you've said she's now legally blind. She's got about 25% vision in one eye.
Sharon
That's right. Amber's had multiple retinal detachments, which are more than likely linked to mitochondrial disease. She also has had a movement disorder which really worsens with all the anti-psychotic medication. And she also has slight hearing loss, which we've got to sort of monitor as well.
Patty
How do you manage day to day these days?
Sharon
Well Rohan is now Amber’s his primary carer. He likes to go to a sort of support group, I guess you could call it, on a Friday where he socialises, and enjoys talking to other parent carers. So generally, we have, support worker on a Friday afternoon, but I try where I can, to work from home just so I can sort of relieve the support worker. And Rohan doesn't have to rush back home.
Patty
I know that you can also be very light-hearted about things that you've processed. Do you find that your family uses humour to process difficult feelings and challenges?
Sharon
We do, and I think Amber, just turns everything… I always say that she turns everything from a lemon into lemonade. And I think I was sharing how recently I couldn't find her Opal card for the bus. And I said to her, ‘have you seen it?’ And she jokingly said back to me, ‘well, how am I supposed to see it, mum? I'm blind.’ (both laugh) But she often has a good sense of humour and she makes me laugh. She always sees the light in things.
Patty
You've spoken about Advocacy Fatigue. What does that look like? And maybe even describe what it is for us.
Sharon
Well, it's constant really. I mean, I think deciding what to fight and what to let go of and choosing your battles. Otherwise, you'd burn out.
Patty
For example, you chose to advocate for better food options. But then when she was discharged, without that proper discharge summary or enough notice for you to understand what you needed to do to access the clozapine, I know you said that you didn't want to make a complaint against the registrar, because they didn't know at the time, and they didn’t know any better. So I think that's important, knowing which battle to choose. You can sometimes win some battles, but ultimately, you want to win the war, don't you?
Sharon
Yeah, absolutely.
Patty
What advocacy tips would you be able to share with other carers?
Sharon
I think number one is understanding the complaints process. So knowing what the process is and having as a backup, you know, state federal members if you need. If you're not really confident in navigating the system, ask someone who is. So, reach out to maybe a friend or family member. And I always say try and be constructive, so be solution focused and think about what changes you're actually asking for.
Patty
So when you advocated for better food, for example, you said you contacted the Minister's Office. How did you actually do that? What are some steps that other people who are in a caring role can potentially also take?
Sharon
It's best probably to talk to the advisor or even with your state or federal member. Contact the local office and talk to one of their staffers to find out what the best way of communicating is, whether that's a phone call or email. In our case, we had a cup of tea with our state and federal member. But I think finding out what the best process is. Often, they also have Pop Ups, they call them. It’s where your state or federal member will be out and about in the community. So, you can actually see when they're out, it's often advertised on their website and go and have a chat with them.
Patty
That's great advice. How did you end up having a cup of tea with your state member? Who initiated that? Is that something you did because you already knew them? Was that something that you did because you emailed and said, ‘I've got this situation, can we meet up? I'm happy to come to your office. Or how about I take you out for coffee?’ What did you do?
Sharon
Yeah, we're lucky, we see our local state member quite regularly up at the local shops, Tim. So, we’re sort of on a first name basis. And I've got his mobile number on speed dial sign. So, it made it easy to sort of connect with him. But I think, look most people will find, that their state and federal members are very approachable, and they’re really open to listening.
So, I think just contacting the local office, working out a time that you can go and connect with them, they’re really wanting to hear what's happening for their residents, and what's happening in the local community. So yeah, don't be afraid to reach out to them.
Patty
And in your case, when you contacted the minister, who was the minister, what did that process look like?
Sharon
Oh, yes. That was, Rose Jackson, who I have to say has a lot of empathy, and she's always compassionate and interested in what people are experiencing in the mental health system. So, I've been lucky in my work to get to know Rose as well. So, I was able to reach out to Rose and to Patty, who is her advisor, and just have a chat with them about what was happening within the system. You know, the hospital that Amber went to, and they were really open to helping us and, were happy to sort of help advocate as well.
Patty
I like what you said when you said, look out for what the process is, find out what the complaints processes. And then instead of just complaining, be pragmatic and offer suggestions. So be solutions focused. And I think we can sometimes forget that, when all we want to do is lodge a formal complaint. It doesn't get us anywhere, does it?
Sharon
It doesn’t. And I think being constructive is the best approach. And you find, you know, if someone has some useful feedback and they're constructive about it, well, I think generally, people are very open and they want to hear that they want to improve the system.
Patty
For the most part, I agree. Sharon, what keeps you up at night?
Sharon
ooh, what keeps us up at night? I think, you know, we worry about obviously Amber and her future, and what will happen down the track when we're not here. I think there's a lot of emotional weight around her diagnosis. I know, even though I don't carry mitochondrial, I still feel guilt. Logically, I know that it's beyond my control, but as a mum, you just want the best for your kids. So, I think that we carry a lot of guilt as carers.
Patty
I think that you're right. I am so grateful that you've spoken so openly about this, because I hope someone listening to this episode might feel less alone in their own complex feelings of guilt that never quite go away.
And can find some comfort in knowing that love and uncertainty, maybe even guilt, can exist side by side. There’s something powerful, and healing in sharing the parts of our experience that we usually keep hidden, isn’t it?
Sharon
It is, definitely.
Patty
Is there anything that you'd like to say to offer some support to someone who's caring for their loved one, and is perhaps riddled by guilt or a sense of hopelessness or helplessness?
Sharon
I think talking about it, I know I've had conversations with my daughter, even, my youngest daughter, and she always says, ‘mum, you've got to let that go. Like you can't carry that.’ And I think even just talking about that as a family and I guess acknowledging it can help you sort of move forward.
Patty
Yeah. Because guilt isn't just one thing that you remove. It's so multifaceted and it has so many layers. So, when you talk about it, there’s another layer that's come off which can be really healing can’t it?
Sharon
Yeah, definitely.
Patty
I would now like to shift gears and get to know the Sharon outside of her caring role with some Fast and Furious questions, hopefully about your quirks. First answer that pops into your head. Are you ready?
Sharon
I'm ready to go!
Patty
All right, Sharon, what's your go to comfort meal when you just want something simple, and no one else is allowed to judge it?
Sharon
Well, I love cooking, and I consider my homemade chicken, vegetable and leek pie as a personal specialty, so I love to cook.
Patty
If you could instantly master any skill for fun, not work related, what would it be?
Sharon
Definitely I wish I could knit! It's fantastic. Very excellent for mindfulness. I actually tried to teach myself off YouTube and I'm just the worst. So, Patty, you should see, I've got a purple scarf that has holes in it that I'm knitting for Amber. It's taking me forever and I just wish I could be better. I'm not very good at it. (both laugh)
Patty
What is your most used emoji? Or the one that perhaps best sums you up personally.
Sharon
I like the stars. You know, the sparkle stars. The three stars?
Patty
Yes, yes, I love it.
Sharon
And I like it because it represents creativity. It's magic, its inspiration, and also a bit of flair. So, I love the sparkles.
Patty
And it reminds me that we are all stars in our own way.
Sharon
Absolutely. For sure.
Patty
And my last question is what's a small everyday thing that instantly makes your day better?
Sharon
I would say practicing daily gratitude. So, I've learned to appreciate the smallest of things. For example, when Amber smiles, it just lights up my day. So, I would say gratitude.
Patty
Well, your own heart and soul live inside her, so when she smiles, I can imagine that it makes you smile.
Sharon
Definitely. And her sense of humour as well just makes me smile.
Patty
Yeah, and I think gratitude is a magnet for miracles. It just keeps you on that really beautiful high vibration. Sharon, thank you so much for sharing your incredible wisdom and your inspiring story.
Sharon
Thank you for having me, Patty, and I hope it helps others who know they're not alone as well.
Patty
I hope it does too. And that is a wrap from us folks. I hope you loved my chat with Sharon as much as I did. And if you're more of a visual person, you can watch this on YouTube. And if this episode made you think, feel, or even just nod quietly to yourself, please follow, subscribe and leave us a five star review so that the algorithm gods treat us kindly. Bye for now.
Sharon
Bye everyone!
Jonathan
Everything that MHCN does is guided by the lived experience of people with mental health concerns, and the families and carers who support their recovery. We're very grateful for their contribution to this podcast. To support, or find out more about MHCN, you can donate, join our free advocacy network and subscribe to our newsletter. All those links are in the show notes below.