2. A little privacy goes a long way

“Having conversations about my progress in front of other people was pretty uncomfortable. When the team would come around my bed and ask me questions, I didn’t always feel like answering because others were listening – especially about things going on outside of rehab.”

“I liked when the team met in a private room to discuss my case, although it wasn’t a room I was allowed in.”

“I didn’t really know what was coming next. Nobody could tell me if I would recover or not — I just had to trust the experts and hope I was making satisfactory progress. I knew what was going on day-to-day, but not what the outcome of all this would be.”

“Coming back to rehab a second time, I was moving independently. I had so much more control, I knew what to expect, and what I could and couldn’t ask for. It felt like I was there for a purpose and everyone was part of that.”

“The bathrooms were shared, but I had a small bathroom near my room that over time I became comfortable using.”

“When my progress wasn’t passed on, the nurses on shift wouldn’t let me do things independently because the right box hadn’t been ticked by the specialists.”

Jeane: I’d like to talk with my team about some more intimate things today, so as I look through the [tech], I request a private space for our review and it gets allocated to the [space] [2, 4, 6, 7, 13]. I really like the [space], because it lets us talk without having to worry about other people overhearing. My team are really responsive to what I’m suggesting and we work together to co-design my plan for the next few days on the large digital workspace [2, 14]. I am able to make some suggestions, and we also keep a few of the sessions flexible for now so that we can work out what we’re going to do a bit closer to the time. My speech pathologist also suggests I try to get in some extra practice with conversations, and the [tech] lets me put out a request to be matched with someone else on the ward who’s looking for the same kind of practice. I get matched with another stroke survivor and am excited to see that it’s been suggested we play [game] together in the forest corridor at 3.00pm [2, 3, 5, 7, 10, 15]. My aphasia makes navigation difficult, but knowing I only need to follow the green line to get to the forest corridor makes it easy to get around [5, 11, 15, 16].

Muhammad: Although I think I’m doing pretty well in my recovery, I’m still really struggling with my eating. I’m so glad that I don’t have to eat in front of anyone else at the moment, and that everything is so customised for everyone that nobody else knows I’m eating privately at the moment. I also really appreciate that here I don’t have to fill in a meal card in advance. Meal times feel much more like a restaurant with lots of options to choose from on demand, and if I’m not feeling hungry, I can wheel down to the dining room and look at (and smell) the options then have them delivered to my room to eat privately [4, 7].

Jeane: Something I have noticed is that somehow everyone involved in my care always seems to know what is going on. My experiences of hospital in the past have been that you have to explain everything 10 times a day to 10 different people, but here, my achievements and progress are all logged and shared with the team so nobody needs to ask dumb questions. I also like that I’ve been able to give my partner access so they can see my progress, but I have complete control over what is shared and with who – my [relative] likes to have their nose in everyone’s business [2, 4, 7, 13, 14].

I’ve always been a cautious person, and I was so relieved that the goal-setting process was personalised not only to my physical symptoms but also to my mental readiness to take on risk. I remember having knee surgery in the past, and the physio that came past telling me that I needed to climb up and down a flight of stairs before I was discharged. I’d woken up from the surgery only a few hours before, and I have always been uncomfortable on stairs at the best of times. I was really scared, not because I thought it might hurt, but because I was genuinely fearful approaching a staircase. When my care team and I started working through the list of situations and possible risks, I felt reassured that I could share which things I personally found challenging, and was relieved that throughout the rehab journey, I felt challenged but not unsafe. That’s not to say I didn’t fail plenty of times, but I always felt safe [4, 19].