Some of the topics discussed will get you thinking about your own experiences. If you feel any distress, talk with someone you trust—perhaps a family member, friend, or your doctor. If you need support, information or advice StrokeLine’s health professionals are available 9am to 5pm, Monday to Friday, AEST. Call StrokeLine on 1800 787 653 or email Lifeline is available 24 hours a day on 13 11 44.

Video transcript

Nichola: Beth doesn't recall lots of different things that happened during that time. Her memory of even listening to how she recalled being in hospital, being admitted – there were lots of key things that didn't happen for Beth. So as much as that sounds negative to speak about, I think they’re probably the biggest learnings that people would want to hear.  

So, there was no discussion about the golden hour. We weren't in rural and remote WA, in Perth, which is where we are, we're in among all the great health systems. So, we've now learnt through the Stroke Foundation about these differences and these inequalities that happen all around Australia – depends where you are and whether you're even offered treatment. And there was no discussion of treatment, there was no discussion of necessary stroke assessment.

So, I think it was frustrating because having to advocate is obviously naturally what you would do as a mum and parent, and I had to become a voice because she couldn't speak. But that was a plus. I think both of us having to look through the lens, from having been a clinical nurse, Ashley's on intensive care, I've worked in neuro, that was the specialty I chose as well and worked in all areas of that kind of recovery after stroke. Every moment that Beth experienced, I was questioning why so little was being done and being offered. I think the biggest gap that we noticed, and I've worked in youth mental health a lot, was Beth and her past medical history was never really discussed. She had already been diagnosed with anxiety and depression. There wasn't a conversation about that, even though they were giving her medication every day.

I think most of the conversations that were had with her were very doctor-patient. There was little time with nurses and there was little time to develop, I guess, empowering partnerships with your patients and that communication where people didn't really check in on her. And also, I would say, they didn't check in with me. You know, it was almost like we looked like the perfect family. She had a brother and sister who were 14 and 12 at the time and her dad was there, I was there. So obviously we looked like we'd got this, and so, assumptions, I would say, are made great deal. And while you're asking questions, which is what I was doing, it was the fact that they weren't forthcoming. So, we were blessed that we could ask those questions because of prior knowledge and understanding, but I would dread to imagine what would happen to someone that couldn't ask those questions. So, we both felt very much isolated at that time.

I think the other part of the journey for Beth was that it is a very clinical situation, to do all those assessments, tick all those things off, to make sure, because everyone wants to go home. That's part of rehab – the goal is to get home. But I think one of the challenges was that at no point when people were assessing, did they actually look at Beth’s life prior, as a young person.  

So, I would say, I wrote down today, how can I put this across? And she was a student nurse, she was a friend, she was a girlfriend, she was a sister, a daughter, granddaughter, niece. She was an adventurer. She was desperate to go traveling. She was volunteering, she was working, and she's had her dreams and her hopes. And I think what I found the hardest was that no one got to know her. So therefore, how would they know how to discharge her home, to be sure that she would have what she needed?

And the biggest challenges were obviously the hidden challenges with her mental health and then huge anxiety after a life-changing moment. She'd been previously fit and well. And I think the other part of that was, I think for her, would she even be able to carry on with nursing? You know, a whole life's flashing before her eyes. What would she go back to?  

And as she said, the resources were there, people did come and give her the information. But none of it, really, was delivered in a way that I think was empathetic. And that's not being unkind to professionals. I think we probably were very, what's the word, understanding – even more so because we've been on those wards; we’ve been there when it has been difficult and challenging.  

And so, yeah, I think I think that probably summarises some of the experiences that I had. I would also say, having looked at things now and reflected over the last two years, I would have said I was fine as a parent. I didn't consider myself a carer, but I experienced, last year, burnout. And I think a lot of that was from the trauma of the whole situation and I even struggle with using that word. So, I would say if you come across any families and you have any lived experience of your own and you can relate to that parent, that family, because you’ve been that, looking through another lens, if you've been visiting your grandparent, your mum, your dad, your friends, I think that's probably the most powerful insight that you can have as a clinician, because you will think how you approach that person in a day. And I think it's that human side.  

So, I didn't get asked whether I was ok. I didn't get asked if we needed anything for the family. You know, we weren't necessarily told about any supports for counselling. So, what we did was we did everything for ourselves until I found the Stroke Foundation and I did start to take the time to go through the My Stroke Journey. And there were elements of gold in there – you just had to flip it on its head to find what would be appropriate, in resources for Beth, by doing that kind of searching a little bit more.  

There's lots of elements that weren't discussed, which I don't know if they’re taboo. So, things like boyfriends, relationships. There's a lot around not even asking consent before Beth was spoken to in the room when her parents were there. She was a young, independent 19-year-old. And again, assumptions made that she would want those conversations to be had in front of her parents. So, I think they're really important things to consider.  

So, privacy, I think, was also another big part of what wasn't considered and then things like finance and the stresses and the burdens of what comes. Again, Beth wasn't...I don't know that she was asked whether she even...I think she did say she lived at home, but obviously what did that mean to her? Was she going to be looking to move out of home? So, I think she has had a huge pressure of wanting to get back to study, get back to work. She doesn't want to be a burden on us. So, what happens for a young person, particularly at that 19-year-old stage, is they do become...and you flip back to a parent-child relationship at a time when you're solely independent and life's going well. So, our dynamics, we had to work out and tread carefully with Beth that we were respecting her privacy and her independence and what did she want her life to look like after this life-changing time?

So, it's definitely been a process. Her brother and sister – we've had to do a lot of education and sharing some awkward conversations at times of, you know, why Beth may be slightly different today, but she's still Beth, she's still your sister, and she still inspires us both every day. She gives us the lead, and I think she's probably taught us more than we could imagine about what we've needed to do and think things differently.