Mad Covid Voices, with Alex

13th April 2020

How has your care changed since COVID19?

I’m in a DBT programme in my health ward, but I had only just started, I’d had 6-8 appointments with my therapist and 1 group appointment, and then everything stopped. I think they’ve stopped the whole DBT programme and, as far as I’m aware, my therapists have all been sent onto the mental health wards in the hospital. It’s through the CMHT that I’m seen. As far as I’m aware there’s a skeleton staff in the CMHT, so I can phone if I need to during the day, but there’s nobody there that I know. They’re phoning me once a week, it’s just unfortunate that the first time it was somebody that I really do not get on with. But there’s not really much I can do about it. I understand they’re trying to prioritise the acute side, but it’s also frustrating because I don’t want to become acute.

How have those changes affected your mental health? 

It’s been up and down, I was quite panicked at the beginning, especially knowing that I had just started to trust my therapist. Actually, the week before lockdown happened we were on daily contact, so when that all went things went downhill. I managed… unfortunately for me one of the things that happens is I quite often will end up in hospital with an overdose or something. I’ve been trying my hardest to stay away from hospitals, so my fear of going into a hospital at the moment is slightly helpful! Although I’m very aware that it puts me at greater risk of not going to hospital if and when I need to. 

At the moment it’s kind of up and down. I was off work for 7 months last year and I feel like that’s prepared me for being stuck in the house, it means I don’t have to go out. I’m not in the highest risk of people but i’m higher risk because I’ve got asthma, so i’m not going out at all. It’s swings and round abouts managing the suicidal impulses. I experience quite a lot of hallucinations, and at first they have… on the one hand been worse and on the other hand not been so bad because other people are around – my husband is in the house at the moment and my friend is doing quite a lot of Zooms. When that’s happening it’s not so bad, but at other times it’s really a lot more intense than it has been. I also had problems getting medication, so I haven’t been taking stuff as regularly that I should.

My support network is good but they get frustrated with me quite easily so I don’t let them know half of what goes on in my head. They can’t take it, and I don’t expect them to be able to deal with it. It’s not fair on them and that’s not what I want them for – I want them for friends not for health stuff. Because I’m quite impulsive, my brother in particular can be quite critical, because I’ll say “I’m just going to go and do this” and he reminds me I’m not allowed to because it’s lockdown. But I was just voicing it, they don’t have to jump on me. I know it’s all out of care, but… yeah, I tend to keep quiet with them because I don’t want to rock the boat so much. 

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

I wasn’t given any instructions at the beginning, it was all a bit of a muddle. My therapist said that she’d be on the ward but then coming back to the community unit on a Thursday and would have home calls with me and others- I said “Yeah, that’s fine”. Then all of a sudden, I then got a phone call from somebody else in the team that said “No, no, no, that’s not happening. You won’t be getting any phone calls from her. I’ll just give you a call once a week to make sure you’re alive!” “Right, okay”, I said. 

I’ve got a safety plan but most of the steps aren’t doable at the moment. I don’t have a new safety plan for the pandemic… i have a safety plan for normal times, but it doesn’t really work in this case. All I can do is phone the CMHT during the day, or in the evening its NHS 111. I did call last Saturday and spoke to a CPN on NHS 24hr, and… it was so frustrating, the person who I spoke to was really nice, she was really helpful, really validating, and then she forwarded me onto the local crisis team in the hospital, so about 4 hours later I got a phone call from them. They’ve obviously got your records and they look at you and they just go “So what skills are you doing?” They just don’t get it. They don’t say it but I know they just look at your records and go “You’re chronically suicidal but you haven’t actually done it yet, so, you’re probably not going to do it at the moment. Just keep doing your skills, what skills are you doing?” It just doesn’t help. 

When I asked them for help with medication, they didn’t help. I spoke to my GP trying to get help with the medication and he just sent me some Diazepam. I really didn’t want Diazepam. I think the GP was reluctant to do anything because it’s the psychiatrist that normally deals with the meds, he just wouldn’t change anything, but I don’t have access to the psychiatrist… or anyone. I can’t really deal with the people who I don’t know. Well, I don’t mind if people don’t know me if they come at it like “Right, who’re you? what’s you’re story? where’re you at right now?”, rather than “Oh, you have this label so you this must be how you are and how you act, so do this.” It doesn’t work that way.

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, meds, things to do etc)

In our community in Scotland there’s actually quite a few local businesses who have diversified a bit, but i can’t get any delivery slots from the supermarket, and I’m not the highest priority so I don’t get the text number. I’ve got a greengrocer who’s doing deliveries, and there’s a local guy who’s a chef doing meat, so I’ve managed to get food and all that- delivered from places who wouldn’t usually deliver. My husband will go out for bread and stuff. 

The house has been alright, Disney+ came around at quite a good time! We’ve worked our way through all of the Pirates of the Caribbean films, now we’re on Marvel. I’m not very good at watching films, I fall asleep, but I’ve really been trying not to sleep in the day so I can sleep at night. I like crafty things, so I just go from one thing to another. I try reading, or the film will be on in the background and I’m doing this diamond painting thing, my sister-in-law got me into crocheting. I like doing crafty things, things you can pick up and put down depending on how you feel. 

Effectively it’s thrown everybody into a crisis situation. My biggest concern is that it’s halted therapy, it’s halted where I am. I find it frustrating, I keep seeing on Twitter all these psychologists saying they’ve started doing Zoom and group session online, and I’m like… why’s my team not doing this? I mean we probably don’t have the resources. They did say in the beginning, it was mentioned that they might sort of be looking at doing that, but they’ve taken everybody out of the Community team and put them into acute, so I don’t see that. They’re just making it up as they go along, which is fair enough, it is that sort of situation. I don’t know if anybody’s plans would have accounted for this sort of thing. It’s frustrating that the community team hasn’t been more supportive. They want to keep people out of hospitals, they want to keep people away from acute services, so I feel like they should have some more support going in the community.

Additionally I had a horrific experience with a GP today. He wouldn’t even entertain offering me any help or advice when I asked for help getting prescriptions delivered. Because he said mental health issues aren’t the highest priority. I would be keen for this message to get out there. 

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

No, thankfully. I’m hoping that everything starts back up again, im only at the beginning of the pathway that they’ve got me on. They have a very good BD pathway here, I don’t like the name and I don’t like a lot of it, but they are actually very good here in terms of personalising stuff and working with you. What they have here is great, but they’ve sent all the really good people to the hospital! Which is fair enough, but yeah, it’s psychiatric nurses who haven’t been on a ward for 20 years. I’m concerned what kind of state they’re gonna come back in, as well. They’ll all have had to deal with acute patients, and also Covid patients in acute services, and it’ll have been traumatic for them as well. Am I going to get a therapist back?! I don’t really deal with change very well, I like to present that I do. I did slightly bite the head off a woman who phoned me the first week and told me a different story than what I’d been told on the Friday. I was like “Stop trying to tell me that i’m wrong. This is what I’ve been told. Can you please go away, find out what it is that’s happening, and then get back to me? Stop telling me ‘i’m not sure, i’m not sure’ because that’s not helpful right now. Go and find out, and then call me back.” So she did! 

Is there anything else you would like to tell us?

Everything is mainly just concerns at the moment, in terms of: What do I do if I spiral? I’m scared of police getting involved, and people who just aren’t helpful getting involved, or people who don’t have the right attitudes, doctors or whatever – who are dealing with a crisis situation anyway so, whether somebody is helpful to someone with mental health difficulties, whether you’re going to get someone like that or not is like a lottery it feels sometimes. I’ve had quite a lot of experience of being in emergency departments, sometimes you get wonderful nurses and sometimes they’re horrendous. It’s the unknown, it’s if I get into trouble and I can’t get myself out, it’s who’s going to be there to help, and are they going to help or are they going to make it worse? I’m more likely to try and deal with everything myself until I’m past breaking point and then, goodness know what’ll happen. It’s a lot of concern around how a crisis will be managed or what I can do, realistically.

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