Mad Covid Voices, with Jesse

14th April 2020

How has your care changed since COVID19?

So obviously most things have been shifted online. I’m working with one of the EIP services (Early Intervention in Psychosis) and it’s quite intensive, they have a bunch of different things rather than just seeing someone once every few weeks. Normally my Care Coordinator would come round each week and see me, but at the moment i’m only talking to her on the phone once every two weeks, and it’s kind of just a brief like… making sure I’m still… y’know, fine. Rather than, she’d usually come round and stay for like an hour and we’d have quite in depth chats. So i’m only speaking to her once every two weeks for about 10 minutes. So that’s been a bit different, especially as she’s the person I had the best relationship with in the service. But with my, I’m also getting, I had appointments with a psychologist and we’re doing them over the phone but we’ve kept the same time and on the same day that we were doing it anyway, which has been quite nice. Y’know, doing it the same length, same time, that kind of thing. Keeping that consistency has been really nice, not having to adjust to something new as well as the time changing. Although we were supposed to be doing it over Zoom or Skype or something, the service hasn’t rolled out video stuff yet, they haven’t worked out how they’re going to do it, they have concerns about it, even though i’m also doing stuff with behavioural family therapy and they’ve rolled out their own confidential video calling system, so i don’t really understand why psychology can’t either use their service or get something similar because it would be quite helpful. Those are the main things. 

How have those changes affected your mental health?

On the whole it’s not been necessarily a really negative experience for me, especially because I’m in an okay place within myself right now. But I feel like if this had happened maybe three months ago, the loss of my care coordinator coming round each week, that definitely would have affected me a lot more. I think it’s been kind of okay, but it’s also because, with the whole lockdown, things have gone better for me as someone who was already in kind of, semi quarantine anyway. I was staying at home a lot and that kind of thing anyway because, y’know, mental health. But since the whole situation has happened I’ve actually been in touch with loads more friends who are now not seeing people in person, so they’re relying online. So people have actually been consistently getting back in touch talking to me and video calling and stuff, when they didn’t before. So that’s been an extra buffer, extra people to talk to and keep up with, even though I’ve maybe lost a care coordinator. I also went to a social group thing that was for people in the EIP service, and obviously that’s been cancelled, but now having other friends who are messaging me a lot more has been a good source of support. 

Have you been told how to get help in a crisis since COVID19?

I think my care coordinator actually sent me an email with… it had some resources about managing anxiety or something, but it also had the standard list of numbers. I did actually look through them one night when I was struggling a bit, and some of the services are closed or reduced and are not operating at the same times, but obviously, mainly it’s the crisis line they refer you to, but from my experiences with the crisis team, if i was in a crisis I really wouldn’t call them. The other kind of services that they’ve put down on this, a lot of them are just online or text based calling services that are for people with more mild conditions. I looked on some of their websites and it was saying ‘everyone gets sad sometimes’, and I know that they wouldn’t be able to understand my needs in a crisis.

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 very lucky because I live with my parents and my sister, and my sister’s now home from school, so I now have more people to do stuff with, we sometimes just sit in the same room and read a book together, read separate books in the same room! that’s been fine for me because I’ve got both my parents there and they’re good people, and i’ve got my sister for company, which I didn’t have before when I was at home. Getting food is fine because none of us are immunocompromised or anything, so it’s fine my mum going out to get food. I don’t take any medication so i haven’t had anything with that interrupted. 

Have decisions been made about your care (discharge, referral etc) that you believe wouldn’t have happened if it wasn’t for COVID19?

No, I don’t think so. I guess because i’m in the service already, and it’s a community service anyway, nothings changed with that i don’t think, apart from i know my care plan has been update for stuff to do with Coronavirus, it’s not any significant change, i can’t actually remember what it even says, but it’s not anything about significant changed. 

Is there anything else that you want to tell us about? 

The loss of a daily routine is quite weird as someone with mental stuff, obviously. I wouldn’t be going out that much anyway, but I’d had certain things on certain days that I’d go and do, you know like, my sister would go to school and my day was planned a bit around the times of what she was doing. But since everything’s gone weird there’s no going outside, there’s no routine, all my sleep has gone completely haywire. The other night I didn’t get to sleep until 7 in the morning and slept until about 2. That particularly, i’m vulnerable to changes in routine affecting things, it’s a bit different. 

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