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Psoriasis (young people)

Money and psoriasis

Prescription and over-the-counter medicines were the main financial cost of psoriasis for young people, but other costs were mentioned too. These costs were a big concern for those young people we spoke to with low and unstable incomes, such as students/recent graduates and people early on in their careers. Adam remembers T-gel (coal-tar shampoo) wasn’t available on prescription when he was a child and his family couldn’t afford it. He used a generic prescribed version but he didn’t like it.
 

Louis found it expensive trying different topical treatments. His GP prescribed him a bigger quantity of one so that he wouldn’t have to pay prescription costs multiple times.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Could I ask a bit about prescription costs? Because I know you mentioned there were quite a few different products you ended up using?

Yeah. Yeah. So the, when I first went in, it was just the one. Then I went in again and it was two more. Then I went in again and it was another two, and I thought ‘this is-, this is now just quite a lot of money’. And so I asked the doctor, "If this doesn't look like it's going to go away soon, can you give me a prescription for basically a shed load of what you're giving me? So I can just sit-, like just have that, and not have to keep coming back and then getting a new prescription?" And he was fine about that, he'd happily give me several weeks' worth at a time. So I could get myself down to Boots and then just stock up on these big piles of different creams and things. But it did, it, prescription costs do- they do add up quite quickly. And as I say, the first one, fine. You take it. The second two, alright, hopefully this will do it. And then by the time I came back the third time and I'd already put- I don't know what it is- three, so twenty four quid, down prescription. And I was being given two more things to try, I thought 'this is-, this isn't great.' So, so yeah. But I didn't mind asking my GP, sort of explaining, "This is- obviously this is a lot of prescriptions, I'm not rolling in cash at the moment, could you just- could you make sure that I get the most I can get out of my prescription?" So he'd give me a big doses and things like that. I suppose it's one of those things that you just-, you've got to take on the chin. I needed the creams I was being given, so.
Some people received prescription medicines for free (for example, if they were under age 16 or up to age 18 in full time education or on Job Seekers Allowance), others had to pay for their treatments. This includes for topical treatments provided on prescription (emollients, bath oils, soap substitutes, steroid creams). Lisa didn’t have to pay for prescriptions after she applied to the NHS Low Income Scheme (via HC1 forms) while she was a university student. Simon’s prescription costs were waived when he was on Job Seekers Allowance but he pays for them now he’s in his first job. These costs can put people off trying new things or buying them again. Zara’s dermatologist gave her five pairs of special socks to help her creams soak in, but she’s had to buy more online since. Some people who had several prescriptions a month bought a Prescription Pre-payment Certificate, which could help them with budgeting and reduce the cost of getting multiple prescriptions.
 

Steven has a Prescription Pre-payment Certificate (PPC) where he pays a fixed amount for 1 year of prescriptions charges. For him, it’s “value for money”.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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And I have tried every, almost every shampoo under the sun for psoriasis. And you tend to, the doctor tends to rotate you a little bit as well. Sometimes one’ll give you a bit of help for like six months and then six months later like ‘nah, go back to a different one’. And then you end up coming back round the circle again. I think fortunately or unfortunately, I was quite quick once I stopped being a student to kind of do prepaid prescriptions which, actually, for me was really good, because you know what you are gonna pay every month or over the year. And it means that if you wanna kind of try something, if the doctor says to you, “Oh, why don’t you try this and this?” You’re not worried that it’s gonna cost you £7 whatever it is, £8 whatever it is now and it be a waste of time. You’ve almost like paid your [laughs] loyalty card and I always say I’m a repeat offender. And you’ve paid your loyalty card and if you get like one that doesn't work so much, you’ve got the other one, the repeat prescription, the one that works. You’ve not like wasted your time doing it. Obviously, you need to look at, if you’re only getting cream once every three months or whatever then it’s definitely not worth it. But, for me like, three things a month like you know like what you’re gonna do.
 
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Sofia says it would be expensive if she paid for her prescriptions.

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Age at interview: 16
Sex: Female
Age at diagnosis: 6
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The treatment because I’m still under, I’m still 16 and like a student they don’t charge for the treatments. If I was over 18 and still wanting those steroids, they would like, I think, charge a lot. And they finish out quite quickly, it’ll take like two or three days to finish half a tube. 

Ok. 

And they’re quite expensive as well. 

So you’d have to keep going back for more.

Especially the Cyclosporine cos it’s worth more than hundreds of pounds. That’s why the doctor said, “Once you start, stop using the treatment again like can you please return any left over,” because they’re like worth a lot of money.
 
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Adam has a different approach to trying treatments now that he pays for prescriptions.

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Age at interview: 24
Sex: Male
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I used to live in Scotland and I used to get it all free because, well, you get whatever, coal tar shampoo they have behind the, the chemist. And the chemist I went to, that’s what they had on offer. So I took my free prescriptions and then went “great”. They’d give me like £40 worth of T-Gel. And then, well, now I live in England I pay for my prescriptions. It’s like the same price to pay for coal tar shampoo as, with the prescription as it is to go buy it yourself. So I probably, I guess obviously I don’t use other shampoos, so I guess I don’t spend money on other shampoos. So it’s not so bad. Cos what I do, I, cos I don’t obviously like the smell of it in my hair, but I put like gel and wax on my hair afterwards, which is perfumed. So I know that the smell’s gonna go when I put that in. 

In terms of costs, it’s c-, again cos I’ve lived, with different healthcare systems. I used to I think be a lot more proactive about getting help in Scotland, getting different treatments and trying things out, because of, it was free. So I was a lot more open to that. Being in England, I’m a lot more cautious about kind of the financial costs of like prescriptions because obviously it all adds up and stuff like that. So the great thing about living in Scotland was that if I needed something, if it didn’t work, it was like, “well, it didn’t cost me any money” or something like that. So I was constantly able to get all my treatment for free. I wouldn’t say it’s like a massive financial burden on my life, but it’s a cost that I have to pay that someone without psoriasis doesn’t have to pay.
Many people also used products they bought online or in shops (e.g. cosmetic moisturisers, shower gels, shampoos, deodorants, face and body make-up, hair styling products, bandages). People had bought many different products to try and improve their skin. Sometimes people opted for a more expensive version of these products and this was the case for Steven who bought a hair gel which didn’t sting his scalp. Not everyone agreed that expensive products were better though. Some people thought that struggling with psoriasis could make someone “desperate” and vulnerable to scams or spend a lot of money on unhelpful products.
 
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Adam came across scams online promising long-lasting ‘cures’ for psoriasis.

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Age at interview: 24
Sex: Male
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I’ve paid money to fraudsters online for like dietary advice, exercise, health advice. So, which didn’t, well, it was just an absolute scam. And I knew it was a, as I was doing it I knew it was a scam. I was just so desperate, kind of like that. So I’ve tried to change my diet. That’s about it really. What else have I seen online? Ah things like “buy this kind of smoothie making guide. And if you put like all of this and this and this and this, then just live off olive oil, you’ll be fine” or something like that. Like really there’s stupid things that I’ve seen, that people kind of are desperate, like people really are. Like I was desperate. Do you know what I mean? I was so close to falling for a lot of them.

But I paid for this booklet that had like a guide. I think I paid like 20 dollars and it was just a PDF that was sent to me. And, and it was just basically like, “Follow these steps and you won’t have psoriasis.” This guy who apparently had psoriasis posted on the forum his like cure for psoriasis and it was a dietary cure. And, and it was basically like, “If you eat just this for the next like 40-odd days or something like that, then your skin will go from here.” And this guy had very severe plaque psoriasis to here. And he had an after picture. I don’t know if you’ve, if you’ve come across any of them. And I was like, “Oh, my God.” And I started emailing this guy. And I don’t know whether, like I feel he may have been genuine, like that happened to him. And I don’t, cos it didn’t come across at all like a scam. Like to me, he was emailing me back like decently. Like, without kind of being like, “What’s your credit card details?” or anything like that.
Most people had seen doctors on the NHS, but a few had seen private dermatologists (see also about help from medical professionals). Some people had paid to see alternative therapy practitioners and treatments.

Other costs associated with psoriasis include:
  • travel to medical appointments/treatment – Megan and her mum had to pay for buses to her phototherapy sessions.
  • extra laundry costs (doing laundry more often because of topical treatments being messy, finding detergents that don’t irritate the skin)
  • water and heating bills, for those who showered/bathed more to soothe their skin and applying topical treatments
 
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Carys’ water bills were high when she used a bath oil/emollient daily.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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And although it sounds ridiculous, if you’re having a bath every day your water bill goes through the roof [laughs] because I was having to bath every day. Again it wasn’t, it was just for symptom relief like. And then they didn’t, they didn’t give me anything for a shower. I only had Oilatum for a long time. So I ended up having to bath just to, to kind of keep clean, cos I couldn’t use regular soaps, cos it irritated me. So I ended up going back to the GP again and asking for like something like a shower gel. So then I didn’t have to have a bath every day, but I could only really maybe skip one bath because the bath, you know, you soak in it and it did do, it was better. 
 
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Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.

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Age at interview: 24
Sex: Male
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Applying ointment’s not fun when it’s really cold in the winter. And I used to live in student, like with students and it used to be dreadful like when people wouldn’t put the heating on. And I had to sometimes sit naked and apply an ointment to my body. And I used to hate it, having to do that, because I’d be freezing cold in this flat. And that wasn’t very enjoyable. And I’d sometimes put it off because of that. And then you could be quite uncomfortable as well with an ointment on. Like when you, and then cos it was so cold I’d have to put like pyjamas on or something like that, get into bed, and it wouldn’t be the most comfortable sleep. And once I was asleep it was fine. But it was getting to sleep, you could feel it all over you.

And, but, so that wasn’t always great, that kind of routine when I kind of like couldn’t afford heating. Or, or you had to, the politics of kind of like I wanted the heating on and part. And also like, I used to, the people that I used to live with like having a warm flat was important to me because of my skin. But I, and I don’t think I, well, I d-, well, again I didn’t wanna be like we’ve got all put the heating on like today unless they, like I just wanted it on occasionally. Because I’d be in a really cold flat and I know that the cold’s not good for my skin and it makes it break out. And then it also means that I don’t wanna treat my skin so easily because it’s a really uncomfortable experience. So that wasn’t so great. But then now I live with my parents where it’s like warm all the time, where if I want to I can like walk around in like just my tracksuit bottoms and like no T-shirt on. And if I thought, “I’d better treat my skin” or something like that, I can go up and put it on and just go and sit down and no, no one will batter an eyelid or anything like that. So it means I’m probably more active in terms of looking after my skin than I was when I lived in this like freezing cold flat where it was just like, one, it was bad for my skin in the first place and, two, it was then very uncomfortable to treat my bad skin.
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