Psychosis (young people)

Housing, managing finances, and getting benefits with psychosis

Impact of psychosis on finances

Psychosis often had an effect on people’s finances, both in terms of employment and earnings, and how much money they spent. Their mental health could directly or indirectly, cause people to spend more or could interfere with choices about spending and saving. Luke, who had a diagnosis of bipolar disorder, said he would sometimes spend unnecessarily or gamble, and it was a struggle to manage his finances.

Andrew X talks about the challenges of managing finances with psychosis as a young person. He notes for example that young people can easily get into debt without the right support.

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Age at interview: 24

Sex: Male

Age at diagnosis: 14

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And in terms of kind of finances, do you see mental health

Yeah, It affects your finances. Something and, and I didn't really get much support in terms of this. Because when I was on my high my spending habits were irregular. I'd buy irregular things and I'd financially I'd really suffer. I'd take out loans and get into a bit of debt. And there's next to no support out there for, for that. There's no safeguards. There's no nothing. So when I was really on my high —I really struggled with that. It was really difficult for me to manage my finances. You know, when I wasn't working ESA was a joke. They'd stop my benefits for ATOS assessments and they'd screw me over so I couldn't pay rent and things like that. So my finances were in a huge mess when I was unwell. I wasn't like 20K in debt or anything like that. It's wasn't ridiculous levels, but that can happen, very easily as well.

But actually what I started to do was as I became well and as I wasn't as unwell, I started to manage my money a lot better. So I've gone on that journey and been really financially erratic to now I'm like, I'm managing my money better than other people and that's uncomfortable for me. I'm not, this is odd. Why are things going so well. I'm from a working class background. I've grown up on a council estate with most times it's been me mum bringing me up. So, I'm not exactly the most well off person in the world. But I manage things a lot better than I did. So, yeah there's definitely—but you don't, no-one really sort of does that. And it's embarrassing to talk about it. No-one likes to admit that they've, that they've messed up money. And also, yeah, most young people mess up with money. You know, and you have to bear in mind that that actually that's, it's not a completely unique position to be in debt as a young person. So, yeah.

Dominic spent money on things he didn’t need, and his anxieties and voices made this worse. Getting advice, and gathering information helped him to “find a balance”.

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Age at interview: 24

Sex: Male

Age at diagnosis: 21

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In terms of actual like finances and all of that, it took me a while to stop feeling sorry for myself. That was the biggest part, because I felt so sorry for myself that I was going through this that every time I had money, oh well, you're like the most suffering person in the world, Dom. Go and treat yourself. I did that every week without fail. I felt so guilty about what I was going through that I would just buy myself things I didn't need. Most of the time it was weed at the time. But these days it's, it would be clothes or a game or something like productive I could get a benefit from, you know. But even those small decisions, the voices have an effect on even putting money in savings, my voices have an effect on.

Every time I get a money struggle, everything inside me wants me to go to my savings. Your dinner isn’t cooked by five o'clock Dom, it's time to get £20 out for a pizza. No it isn't is it. It's just ridiculous. And they try and impact every decision I make, every financial decision, every step towards moving out – everything. But the way I combat that is by gathering as much information as I can, knowing every answer to the things they're gonna throw at me. So, I come to this place [local Mind centre]. And, I get housing advice. I get help. I've asked them so many questions they've been brilliant the whole time. And at home, it's all written up, every answer to every question they may ask is there. So if I get confused, if they throw a curve ball at me, I know it's there, so I just go and read it. Again, it’s, for me that evidence is the most powerful thing, because I can obsess about something that would never happen, but I can obsess about it to a point where I believe 100% that it will. And I have to go and- ‘well, okay, let's say that it was going to happen, you've got this much in savings. You've got this going on. You know you're gonna get this help. So is that a possibility really’ and the severity of it drops. Maybe ever so slightly, but it drops. Every, every time that drops, I think, right, it can drop. The severity of the situation can be lessened. And I use that to ‘okay, right, if I can lessen, if I can lessen the severity of this how else can I do that?’ More evidence. More, more planning, get more things in place. More money and savings. More this and then every eventuality is almost covered, you know. That's how I deal with it. It's a bit obsessive sometimes or I get ‘what if that isn't covered for’, I find a balance in that, in my own way. But yeah, I, if I have all the information that I need and nothing can throw me off, nothing can give the voices an opportunity, because that's what it's all about, it's about if they have an opportunity. If I feel an anxiety that I haven't felt yet, they will blow it up. They will inflate that that anxiety to new heights. And I can't prepare for every eventuality no.

When Joe had no energy or no time to prepare food he would spend more money to buy something ready made.

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Age at interview: 23

Sex: Male

Age at diagnosis: 21

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I think with any kind of stress or pressure mental health being one of them. In life you have three resources - money, energy and time. You have to spend more of one if you spend less of the other two.

Wow.

So if I am feeling crappy and don't have the energy to make lunch in the morning, I either have to - Well, I'll have to buy lunch at work. Which costs money. But if I spend time and energy making food, I won't have to spend as much money. It's about balancing those three. Which I'm trying to get better at [laugh].

Mmm. Sounds amazing [laugh].

[sigh] Christ [laugh]. No [laugh]. NHS doesn't pay as well as you’d like.

Yeah.

[sigh] But yeah, I've been trying to - Basically I'm trying to save up to do a Masters in theatre. Which will be a long way off.

Okay.

Because, yeah. It's another reason why I'm trying to look for a better job, because I need money [sigh]. It's also. Yeah. I think with any kind of pressure you have, it will increase the burden or the load on energy or time.

Financial support and benefits

Some people we spoke to were working when they first experienced psychosis and felt too unwell to continue, or their employers did not understand their needs or how best to support them. Some were given sick pay initially when they were off work. A few received support from parents, but there were others who had no alternative means of financial support and were unemployed or studying when they first experienced psychosis.

Most had applied for some financial support (in the form of benefits) at some point, including;

PIP (Personal Independence Payment)
Disability living allowance (under 16s)
Statutory Sick Pay
ESA (Employment and Support Allowance – previously Incapacity benefit)
Job seekers allowance (age 18 onwards)

Luke applied for PIP but didn’t get it. He describes what it is for and some of the questions he was asked.

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Age at interview: 21

Sex: Male

Age at diagnosis: 19

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I applied for Personal Independence Payment a while ago, but. That was - that's known colloquially as the thing you have to apply to three times, to get.

Really?

Because I didn't think I was eligible for support as you know, I'm in full time employment, I have enough money to get by and stuff like that. And my carer said, "Actually, the reason this exists is to - you know - you might run into additional expenses that other people might not. You, you might need extra therapy that's private." And suddenly I thought 'ah, nice - yeah, yeah I suppose that would be, that's a nice, that's a nice benefit, and it's something that would help me, and I am eligible for it, because I think that's what it exists for, so I'll apply'. Didn't get it. And I then - never applied again since.

It was just - You know, some of the questions they ask, 'Can you cook a meal?' I said, "Yeah, I cook." I replied "I can do quite a nice Thai green curry, actually."

But, yeah. I don't think they appreciate jokes in the application. But nevertheless.

Sam describes her experience of applying for PIP. The people asking her questions for her application didn’t seem to understand that the difficulties caused by psychosis are “intermittent” and her application was refused.

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Age at interview: 18

Sex: Female

Age at diagnosis: 17

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And sort of finances, I remember you were talking about the sort of trying to get benefits.

Mmm… like, cos, it's like I don't really know what to do about that. I don't wanna be on benefits like for rest of my life. But I don't really want know what to do about it. When I get a job like do I mention it or 'cause they go through and look through your background and stuff. I don't know whether I'm supposed to mention it. But then if I do are they gonna, are they gonna judge me and I don't really know how to go about it. So

Stigma around it.

Yeah. So and I've sort of spoke to a CPN worker about it and that and she said, you know, ''Try and sort of get some sort of income like ESA or PIP which I'm trying to do. But, just they don't especially with PIP they don't wanna give it away very easily like I understand that. But also, they don't sort of see like the [camera pans out] like they don't see that it like that it is technically an illness. They don't see that. They just see it because they caught me on a day twice that on the interview that I was fine and I was still telling them everything. My support worker was telling them everything. First time they copied all the wrong information, wrote all the wrong information down. So, second time, they still rejected it. And I haven't even read it to be honest. I just read the rejection bit. I haven't even read like their report or anything, because I don't even know if they got like got the letter that my CPN worker sent. For all I know they couldn't. So I've just gotta take it to her sort of when I see her before I go away and just sort of say, get her to read it and sort of see what's going on. But, you know —

So do you think their assessment method isn't very accurate?

No, because it's only like unless they like, you've like got like your leg falling off or got like one arm or something. They, they or like a vision impairment like a really bad one. Like they don't, they don't see it. It's like it doesn't enter their head. And the amount of times I've said it's intermittent. It can, I can have good days and bad days and really bad days, you know. And today might be a good day that you've caught me on, you know? But [laughs] that’s as good as talking to a window, you know. 'Cause they don't, they don't like I say, they don't hear the word intermittent. They just go, right, okay. They don't, they don't write it down. I know they don't, because it would come up on the report. They don't write it down. And it's just like, it's just irritating. And so, we've tried filling out that form and sending that off to ESA before Christmas. No idea if they have anything. Have I got it back or not. So, my CPN worker's gotta ring them up and sort of see what's going on. But only it's the irritating thing is, they won't talk to her until I give them permission. Until I say or they want to talk to her. If she rings 'em up on behalf of me, they just won't talk to her. That's how it is with the benefits.

Applying for benefits was often a frustrating process. Some people said they were told at the start that their application was unlikely to be successful.

Andrew Z describes having gaps when he was not receiving benefits and confusion over which forms to fill out.

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Age at interview: 23

Sex: Male

Age at diagnosis: 20

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I had problems with my finances because of my student, I was receiving DLA Disability Living Allowance no longer exists it's called, PIP. I was told I had it for life and it was then cancelled when I had psychotic episode and they wasn't sorting it out. So I had several months of not receiving it and I wasn't receiving other benefits I was entitled to.

That was just 'cause of the paperwork.

Yeah. And I wasn't, and I was still spending money. So I was kind of, 'cause I actually had to eat and stuff. So it was quite difficult with it. That's all sorted since then. But problems keep coming up like, you know, when I went back to university, I filled out the student finance application and they told me it was fine. And then I moved and then they got this letter telling me, because I'd taken a year’s GAP out of studying I had to fill out another form. And they said, I couldn't get my student finances. I filled out this form and I was having a psychotic episode at the time and it was my mum getting all stressed, blaming me as well, saying it was my fault for filling out the wrong form. And I was like, well, they told me I filled out the right forms. I couldn't fill out the form, because I had psychosis and very comp- yeah. Ups and downs in terms of that, yeah.

And has anyone given you support about filling out the forms then? Or was no-one around to…?

Not at the time. No-one was. But, yeah, since then, yeah.

So who would do that sort of thing then?

It's kinda no-one has a specific job description to do that. But I suppose people can like care coordinators can, if you get what I mean.

Is that who helped you then?

Yeah.

Others felt that their psychosis was not taken seriously or seen as a real disability.

Tariq was shocked when a university lecturer challenged him on his right to a Freedom pass and said “I can’t see your disability”.

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Tariq was shocked when a university lecturer challenged him on his right to a Freedom pass and said “I can’t see your disability”.

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Age at interview: 21

Sex: Male

Age at diagnosis: 18

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And the thing I remember one day when I went to university I walked up to one of the lecturers and basically it was regarding my travel, to renew my travel and for my Freedom pass and a lot of students have to do that. I showed them my Freedom pass and then they go “How come you’ve got a Freedom pass?” I say “Because I’m a disabled student,” and they go “Where? I can’t see your disability.” And I’m like, “You know, you don’t need to know where my disability is,” and they’re like,” But when I look at you I don’t see you in a wheelchair, I don’t see any disability where, where is your disability?” And I really felt shocked, I felt degraded, I thought, you know, who the hell are you to ask me what my disability is, you just, your job is to renew my pass, not to tell me where, and what shocked me is that people are so narrow minded that they choose what is a disability and what is not. For them a disability is someone that needs to be in a wheelchair or someone that needs to, you know, physically needs to be throwing up or whatever. But when you’ve got mental health difficulties it’s like people it’s frowned upon, it’s like. “Oh you’ve got mental health difficulty that’s bad, you know, you pose a threat, you know, get away from me”. And it really shocks me by the wide, how bad and widespread discrimination is in our society.

Housing

Many of the young people we spoke to were living alone or in shared accommodation such as supported housing or student accommodation. A few had moved back to live with family and one person had bought her own flat. Most people had times when they relied on charities, housing associations, government support or family in some form. Haphazard spending or having gaps when benefits had not been paid, for example having them stopped for a period of time, could mean that young people were unable to pay their rent, and found themselves going into rent arrears.

Lucy had been working full time before her first experience of psychosis and had her own flat. Because of this she wasn’t entitled to housing benefit so had to rely on support from her parents, or face losing her home.

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Age at interview: 22

Sex: Female

Age at diagnosis: 21

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It was - It would have been worse for me, except that my parents have been able to support me. But I bought a house a year before I started experiencing psychosis, or a flat. And because of - Because I owned a flat, most kind of benefit options were kind of closed to me. Because if you're in rented accommodation you can get housing association help. But if you're in your own place, there's very little help available. So if my parents hadn't have been able to help me, I think I would have had to sell my flat. And then wouldn't have got benefits because I'd have had too much money from the deposit that I'd paid, to actually receive anything. So I would have, you know, put all the years and years of work and a bit of inheritance that I'd put into my flat, would have just gone straight out into just living expenses.

So that would have been really difficult, except that my parents were able to help. But I found like the services designed to kind of teach you about benefits and things is not that great. So I went to No Limits, which is like a charity that helps people under 25 with issues. And I said to them, "I don't know how I'm going to pay my mortgage next month, because I can't work, my benefits haven't started yet." Or "I don't know what to apply for." And that kind of thing. And they gave me a leaflet on homelessness [laugh]. And I thought I still own a house, and you're already saying 'well, maybe you'll become homeless, so here's a leaflet about what to do if you do'. And I thought surely there's an intervention before that stage? Like you shouldn't be encouraging just ending up on the streets when there must be another way? And about - I think it was six months after I was off work, my benefits went up by - went up from like £57 a week to £125 a week. So it's kind of enough to live on now. But for those six months, they would have just - like I couldn't have possibly lived on that amount.

And was that just about applying for the right thing in the right way, or?

I think it was to do with the - the rate of benefits just goes up once you've been off for a long time, I guess they think 'okay, you're a long term ill person, and we'll give you some more'. Which I assume is how it works, but. I didn't kind of know that. So when I got a letter through saying 'your benefits are now this much a month', I was like 'oh, that's nice' [laugh]. But like I had no idea. And I'd been like really panicking about how I was going to like live the rest of my life on £57 a week. You know, because maybe I'll never be able to get back to work. But, yeah. A few months after, it went up and it was okay.

Living with family could be helpful because there were people around for support, but sometimes this created other challenges. For example, some people had difficult family relationships while others had frequent hallucinations that involved family members being hurt. For Dominic, whose psychosis often involved seeing images of family members being hurt, moving away was the scariest thing he’d ever done because he wanted to be near to protect them. Hannah felt moving away from home to study was exciting but also daunting.

Most people described getting help, especially from charities, with applying for housing support. Chapman was homeless for 6 months to a year and charity staff helped by calling places to try and find him somewhere to stay temporarily. However, this was inconsistent and on one occasion he was told they couldn’t help because he is still in the process of seeking asylum.

A few people lived in residential or supported housing for a while, where there were wardens on site. Being in residential or supported housing could mean someone was available to give them their medication on a regular basis, and it could be helpful to have support staff available in the building when you were struggling.

Emily compares living in a residential home to living in supported housing where there is more freedom.

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Age at interview: 23

Sex: Female

Age at diagnosis: 21

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I've got a room, basically, in a house. And when I first started going into supported accommodation, it was strange, 'cos you had people up there, there was an office, it wasn't like a house. You had a bedroom, but you had the staff up in the office and you had one staff member sleeping in overnight and one that was awake. You know, they were always around like getting involved in what you were doing. They'd knock your door and they'd say, you know, come on you haven't been out of bed today and things like that. So, I can see why it would benefit some people, but because I didn't need help with things like cooking and cleaning, I could do all that, they couldn't really help me. I needed the help with the emotional side, the mental health side of things whereas they weren't trained in mental health, which was kind of weird, 'cos it was a house for mentally ill people. But yeah, they didn't really, they couldn't help me and they just ended up getting frustrated with me and that's how it started to go downhill. But I mean, I'm in supported accommodation again now and it's a lot more relaxed where I am. You know, you've got staff there, but they sit in the living room and they are just always about and you can just chat to 'em and it's not sort forced like, what are you doing? You haven't done this. It's just nice. You can just talk to them about anything.

How did that change happen? Is that just different types, just it so happens that this other supported housing place was more relaxed or—

Yeah, I mean, the one I was in before, they call it a residential home. So it was more structured and things like that. But the one I'm in now, it's literally supported living, but you just rent a room. I mean, the council pay for it. It's just like renting a room in someone else's house, basically, but you've got the people there if you need 'em. They do your medication for you and come up, wake you up to do your meds and then they sort of leave you. But if they haven't seen you for a few hours, they'll come up and check on me. And it is, it's quite, in a way it's nice, 'cos you've got like that little comfort blanket. You know they're there. And, you know, sometimes they'll come up and they'll catch me self-harming and they'd confiscate the razor and they'll try and talk to me about it. But they don't push too much, as much as the other people. So I think they've learned, especially the place I'm in now, 'cos the first time I self-harmed they wouldn't leave me alone. And it caused me to get so worked up they had to phone an ambulance, 'cos my voice has got really bad and but since then, they've learned that, you know, I'm not gonna be dangerous. I've been doing it a long time. I know what I'm doing. They just let me have my space and come to them if I need to. So it's quite helpful, really.

Moving into independent housing could be more challenging and having help with something as simple as unpacking could be really important.

Ruby lived for a year without being able to unpack her belongings but was too embarrassed to tell anyone. Getting help with it had a huge impact on her mental health.

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Age at interview: 22

Sex: Female

Age at diagnosis: 19

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So that was moving from what kind of housing to what kind of housing?

So that was, I was already in it's housing association housing. But I was in a third floor flat moved to a ground floor flat. But when I moved, I wasn't well enough to unpack. So a year on, there was still boxes everywhere, because I wasn't in a position to unpack and I'd never let anybody in, nobody, absolutely nobody, because I couldn't, I didn't want to admit that I couldn't unpack. And so eventually I let somebody in and we set that goal and we worked towards it and we achieved what I didn't think would ever be possible and then the impact of that on my mental health was huge, really. 'Cause not only did I now have a liveable space, I could have people come over if I wanted them or needed them to come over. But also, it's a reminder that I can continually tell myself that if a little bit at a time, 'cause I can't do stuff for very long, because of my physical health. But a little bit at a time does achieve an end goal. And so with recovery say, a little bit at a time, hopefully will get to where you want to be.

While support from charities such as housing associations was available it tended to vary from one area to the next. When Ruby moved from supported housing to independent housing she received a “comprehensive pack” from the housing association but her friend, who was with a different housing association, received nothing. She and her friends created an information pack with the help of a charity so that people moving into independent housing in her area had proper advice.

The location people lived in could also have a big impact on their sense of wellbeing, which in turn could affect their mental health. For example. people who lived in an area where they saw or were involved with drug dealing, or excessive alcohol drinking often wanted to move away to enable them to move forward with their lives. Others described practical reasons for wanting to move. Green Lettuce felt that moving out of the countryside might help him to find work in IT more easily.

Fran lives in an inner city flat where alcohol and drugs are everywhere. She wants to move to the countryside where she can get the peace and quiet she desperately needs.

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Sex: Female

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Yeah, it’s part of my plan. I mean I’ve had to tell so many people to go away, and that’s not the easiest thing to do. But then when all these people are your neighbours, it’s just like, you’re just desperate to move. Because I’ll go to the shop and I’ll see like, “Come for a can.” And it’ll be like, “Mate, it’s 8, it’s 8 in the morning.” And then I’ll be like say, “I’m not coming for a can.” “Oh, you think you’re too good for us now, don’t you?” It’s like, “No, but I just ended up in the psychiatric hospital. Enough’s enough.” Like, yeah, but.

So moving will be really good for you?

Yeah. And it’s, basically it’s still like [place name]. It’s quite near my mum’s house. Which is nice. I can get one bus into town, so it’s not too far out, but it’s basically in the countryside at the same time. And I’m just like, really love the idea of just walking around. And there’s some really beautiful walks round there.

So your mum and family will be nearby?

Yeah.

You’ll know, it’s not like you’re in the middle of nowhere?

Nowhere, yeah. So I’ll know my way back into town and everything. I just need peace and quiet. I need peace and quiet like seriously.

Will you still be able to get to work and all your other..?

Yeah. Not as easily, but one bus. So it’s alright.