15th April 2020
How has your care changed since COVID19?
Prior to COVID19 I was seeing my care coordinator every week, I was having therapy every week, obviously seeing my GP every 2-3 weeks. Now, everything’s moved to over the phone, so some therapy over the phone which is interesting… some that are every week, but my care coordinator’s become even more unreliable than normal. She probably phones every 2-3 weeks for a minute, and that’s about it. Normally she’d be first port of call if there’s any problems, but it’s now even harder to get hold of her cause she’s working from home. It’s a bit difficult. GP’s now over the phone every 6 weeks, and my psychiatrist appointment has been cancelled as well. The psychiatrist said they’ve cancelled all routine appointments.
How have those changes affected your mental health?
Right now things are okay, but at the start when things started to change – literally the day that… about a month and a half ago I had a bit of a relapse with psychosis and I wanted to phone my care coordinator to explain what’s going on, and to explain to her before she was coming to see me that afternoon, and then it turned out actually from that day onwards they weren’t doing face-to-face appointments. That made it very tricky because it was hard to get the treatment I needed and stuff. You’re meant to be able to just discuss it with anybody, because I wasn’t seeing anyone. it took longer than it normally would for things to get back on track. Other than that… years ago i was a very anxious person, now i wouldn’t consider myself anxious at all. The past 2-3 weeks, I dunno if it’s because I’ve got no support because of what’s been going on, the anxiety’s just risen again, y’know? So, that’s been tricky. Other than that, things have been going okay. It hasn’t mattered too much I haven’t had the support I’d normally have.
Have you been told how to get help in a crisis since COVID19?
No. Less than normal. Normally it’s head to A&E. I tell you what I did get actually, I got a letter from CMHT, just like a generic letter, which had – it didn’t have any advice about going to A&E in a crisis or anything like that, but it did have 3 charity helpline numbers on. So that’s about all the support, the out of hours support should I say, that we’ve been directed to. And obviously…you can still go to A&E, but would you at this time? I don’t think I would do! So no, i probably know less about where to go in a crisis than i did before.
How is the experience of self isolating / social distancing in the community? (How are you finding living alone / with other people? Are you able to access support, food, meds, things to do etc?)
I’m really lucky to be honest. Normally I live alone, but when this all kicked off because of the psychosis relapse, I moved back in with my parents. So I’m living with them at the minute, and that makes it a lot easier. So I’ve got sort of support from them, I mean, well, sort of y’know, sometimes that’s questionable but, but at least practically i’ve got support from them. Apart from my Dad we’re all quite well, he’s got diabetes, so apart from that we’re all quite well and can still go out, we can still get things we need. Medication’s been fine actually, I’ve been ordering it online. I’ve got to drive quite far away to get to the pharmacy it goes to, because the pharmacy it goes to is the one near where my flat is, but one of my parents will drive me there. No, it’s been fine for us to be honest, we’re in a very fortunate position. My mum’s still working, my dad’s job’s still there, they told him to take 12 weeks off paid, so as a family we’re in a very fortunate position.
Have decisions been made about your care (discharge, referral etc) that you believe wouldn’t have happened if it wasn’t for COVID19?
I think that the only thing which has been changed is the dose of me depot. That was first of all, they added in tablets and then they upped the depot, and normally my consultant would see me for any sort of meds changes, even if she made them away from me, she’d see me within a week to go through that and make sure everything was okay, make sure they isn’t any side effects, whereas since everything been upped i’ve not spoken to a single person other than my therapist.
Is there anything else that you want to tell us about?
Don’t think so, no.
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