Mad Covid Voices, with Sam

22nd April 2020

How has your care changed since COVID19?

I mean I didn’t really have much to begin with, so I think it would have changed a lot more if I actually did have some. I’m technically under secondary services, but other than the occasional check in with a psychiatrist I don’t really have any contact. So the main difference there was rather than meeting her for an hour, or up to an hour – I think they allocate an hour to meet with her, I had a telephone call, which was quite weird I guess because I’ve only met her once, where she… she kind of told me that I was doing fine, so… I was like “okay”, and now I’ve got another appointment in June, so… [laughs]. 

How have those changes affected your mental health?

I do feel even less secure than usual, due to negative experiences anyway I don’t feel like mental health services they should be, I don’t feel like they would be there to help in a crisis. But i feel like, at least there might have been something, whereas now I doubt there’d be anything at all to be honest. 

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

Yeah, I got a very generic weird letter that had a space for my name, but didn’t have my name on it. It said ‘Dear…..’ And then a space for them to write my name in, but they didn’t even bother to write my name in. So, yeah I feel really cared for – that was sarcastic! It was very generic type things, I did read it and then throw it in the bin because I was like well that’s not going to be much use for me. At least in the area that I live in NHS 111 have a mental health option, so you press – I don’t know how many places in the country do this now – but you dial NHS 111 and then you press 2, and you get through to a mental health part of it, so that’s quite a good service and I have had positive experiences with that. But they’re also extremely limited in terms of what they can do as normally they might even be able to come out and see you if need be, or they can send you to a joint venture with MIND called the sanctuary, where you can basically go and spend the evening there. But you need to be referred there through services, you can’t just turn up, but obviously with everything going on that service is closed, and i’ve been there once before and it was really helpful to have a safe space to go to for the rest of the day, and that just wouldn’t be an option anymore.

How is the experience of self isolating / social distancing in the community? (How are you finding living alone / with others, are you able to access support, food, medication, things to do etc).

I actually had to self isolate quite early on, about a month ago, even before the kind of lockdown things kind of happened and they changed all the guidance on that, and my immediate kind of, I’m lucky I don’t like alone but my immediate panic was how am I going to get food, even at that point I couldn’t get any online delivery slots. Thankfully I did have some food in the house, and I kind of got together the courage to ask neighbours to bring me some milk and my medication, and then i managed to just about get by for a week. But I think if it had been two weeks it would have been a lot more difficult, because I had just gone food shopping just before I had to isolate for 7 days, so I did have food in the house, it would have been a lot worse if I hadn’t. The staying at home bit wasn’t too bad, it was more the fact that I didn’t really have to choice, and I do try and get out every day. This kind of sounds a bit backwards but it kind of makes sense in my head; sometimes I kind of struggle to leave the house, but if I push myself to go out every day or nearly everyday that makes it a lot easier, so I was really worried that actually if I stayed at home for a week I wouldn’t be able to leave the house again after that. I kind of feel like, I can have the odd day where I don’t go out but after two or three days seems to be the tipping point, and at that point I just get really anxious about the thought of leaving the house, so it was really difficult to get back out after that. I think like a lot of other people, the last time I was told “you’re not allowed to go to a food shop” was when I was in hospital, even as an informal patient on a ward right next to a Tesco, I was told “no, you can’t go to Tesco”, so I haven’t really had that experience since then. 

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

No, because there wasn’t really much going on in my care anyway, it’s still kind of the same really. I think the only thing is i’m on a two year waiting list for psychology, and that’s, actually probably maybe going to be two and a half years and now maybe that’ll be more like three years. I think I was due to have the… they have two waiting lists apparently, one to actually get assessed to see if it’s right for you at which point then they might take you off anyway, and then another to actually start treatment. I’m now at the top of the waiting list to get assessed for it, but they said it might be an hour and a half assessment and I didn’t really want to do that over the phone, so that’s going to delay it, and yeah like I said I’ve been waiting a year and a half for that, and they said it’s going to be at least another year, so that’ll just delay things more.

Is there anything else you would like to tell us?

I think, even though they kind of count COVID deaths through people who’ve tested positive for COVID, I feel like there’s going to be a lot of deaths that are directly related to COVID that aren’t going to be recorded as such, because they would be due to people in the mental health community. I think it’s been very strange how there obviously has been more talk around mental health, around how people are coping with isolation and lockdown, but there doesn’t seem to be much conversation about actually mentally ill people, which, it’s not surprising in a way because it’s always been like that. We’re talking about the mental health of everyone and that’s great and I would totally support that, but the people who were actually already mentally ill… doesn’t really seem to be much talk about that really.

The thing is, no one really knows what’s going and that’s my experience of work, obviously i’m not in management or anything so i’m not involved in a lot of decision making, but everything seems to be changing on a weekly if not daily basis. No one really seems to know what’s going on, the communication between management and people actually working with patients is even worse than usual, so everyones just running around like headless chickens and no-one really knows what’s happening. Which is kind of in a way to be expected because, you know, it’s an unprecedented situation, but it’s not really very helpful for anyone really. The number of staff off because of having to self isolate or whatever is absolutely ridiculous, we’ve lost nearly half our staff. 

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