Eczema (young people)
Money and eczema
Costs associated with eczema can include:
I only knew to ask, I haven’t used Protopic yet, but I only knew to ask for Protopic because my friend had gone to a private dermatologist and she told me it worked for her. And I’d asked my GP for it. That would not be available for most people because most people cannot afford to go to a private dermatologist, like. And it’s just so ridiculous to think that girl on the, like a, like if you’re living in poverty and you go to a GP, you’re getting free prescriptions, but you’re not getting the same level of treatment as you would if you could afford to go to the dermatologist straight away. And I think that’s completely like, that’s really unfair. And that’s the same for, that’s not just eczema, that’s like all conditions.
Where I’ve got a monthly one anyway, it will all get covered under it, so it doesn’t for me but if I did have to pay for it individually – it definitely would, cos I wouldn’t be able to afford to do it, yeah. Which I don’t think it’s fair that people with eczema have to pay for prescriptions or people with asthma or anything, cos diabetes get it for free and it’s still a long standing condition so yeah, I don’t.
Yeah. With the monthly certificates for prescriptions, when did you start doing that – would it have been straight away?
When I came out of education I started doing it straight away cos I was like, yeah, this, I’m going to have to, so yeah.
Do you remember where you found out about those certificates for prescriptions?
My pharmacist actually told me because well, I’m in there every week [laughs] like they know me in there. And I was doing my prescription once and I said to them, “I’m going to have to start paying soon,” and she went, “Why don’t you do it monthly?” I said, “I didn’t know you could,” and she said, “Yeah, you can,” and she gave me the website you can do it on. And I didn’t know about it, I didn’t even know you could.
Paying for eczema treatments (prescription and shop-bought)
Prescription medicines were the main financial cost of eczema talked about by young people. Some received their prescription medicines for free, others had to pay. Often parents had been in charge of sorting prescriptions and it could come as a shock to young people to learn that they could have to pay for their eczema treatments in the future.
Many people used a mixture of prescribed treatments and shop-bought products. The costs of these were sometimes compared. Alice thought prescription medicines are a “rip off” whereas Naomi and Aman think they’re reasonable for the quantity/quality. Some people put off seeing a doctor because of the prescription costs and tried shop-bought things instead. Some emollients are cheaper on prescription than bought from a shop, while others are the opposite.
Thinking about it, it must cost me a lot of money to go through all of that moisturiser – a while ago I was clearing out my room when I just had pots and pots and pots of moisturiser and I dread to think how much I spend on that ‘cos it’s not cheap, it’s like £4 a bottle and I go through one about every two weeks. So that must cost me a lot of money. And prescription charges are a lot these days, that’s probably one of the reasons I don’t go to the doctor about it now because it’s like £8, £8.60 or something for a tube of cream that doesn’t really make much difference to my life so I just don’t bother.
So in that situation would you sort of think well I’m already using moisturiser, it’s not an £8 thing to fork out in one go type of thing?
Yeh for me I'd rather just use something that I can buy a bit cheaper. I mean like my friend with it really bad on her hands, she has to fork out a lot more money to control it because it is something that impacts on her so much but I’m a bit of a cheapskate so I don’t, I just use Vaseline [laughs].
Recently Vaseline has been taken off prescription. I don’t know why. I am really annoyed about that. Because the last time I asked for Vaseline petroleum jelly, I was given some cheaper option which is not as good. It actually irritated my skin. So, I ended up having to buy the Vaseline products myself, of course. Although some, although like a bottle is pretty expensive I do tend to take quite some time to go through them. But then my dad keeps an eye out for the offers, like the other day, my dad was saying, well, they have got these bottles of Vaseline Intensive Care and they are doing them £2 each. So then he bought like four of them, which was like the last four there, knowing that I would I would go through them. They will probably last me about a good six months.
But main problem was, were sort of emergency situations where I needed medication quickly but some of the doctors or repeat prescriptions are on some hold or have to wait two/three days. In those cases I'd have to rush up to a pharmacy and buy the medication that I’d usually buy. I remember some moisturisers costing about twelve/thirteen pounds, or sometimes there was this anti-allergen tablet called cetirizine hydroxide, and that…a pack of that cost about ten pounds alone. So that with moisturiser, about twenty quid right there. When I was young that wasn’t really a problem, but as I got more older and independent living on my own, it's become a big problem especially since I have to manage my own money and sort of unexpected…costs like those are really problematic for a person like me, and probably would be for anyone else in the same situation who has to manage their money and suddenly realise sort of twenty/thirty pounds on eczema medication, which in about two/three days we could have just got from a doctor.
But at the time it was really sort of essential for, for them to keep going.
Some people were exempt from paying prescriptions (for example, if they were under age 16 or up to age 18 in full time education). Others had Prescription Pre-payment Certificates (PPC) where they had paid fixed instalments for either 1 month, 3 months or 12 months of prescription costs. Georgia said her PPC is “handy at the moment” because she’s going through emollients quickly. Those with low incomes and without savings, such as some university students and others with part-time jobs, had applied to the NHS Low Income Scheme (via HC1 forms). Hazel had one of these whilst at university and stocked up on prescription products – she’s since been using these medicines (within their expiry dates).
So I had free prescriptions when I was a student cos I applied for it. The first time I applied for free prescriptions I had a part-time job. And like I’m sure a lot of people know like when you have a part-time job, sometimes you get a lot of money for one week and then you don’t get it the rest of the time. And the time that I applied, I must have had like a really big pay cheque and they refused me on the prescriptions. And I was just like, on the free prescriptions, and it was so upsetting cos I thought ‘oh, how am I gonna afford like my next lot of prescriptions?’ Prescriptions go up in price completely independently of any sense of inflation or like pay rises in the country. It’s really shocking when you go in and you think ‘how have you raised it by like however much it is? Like 50 or 30p or like, that’s such a big quantity to go up by each year.’ Sort of like £8 something now. So, yeah, when I, once I got the free prescriptions it was great. I just got free prescriptions. And then, then, and when I started working I kind of, it’s just like one of the expenses you just have to take into account.
Some had seen dermatologists privately, often paid for by a parent. Molly had seen a private dermatologist who she found helpful because they had talked in detail about eczema. Aadam’s parents had medical insurance which covered him seeing a specialist doctor. Some people had also paid to see alternative therapy practitioners, such as Gary who went for homeopathy treatment.
Trying lots of different eczema treatments
A key thing about eczema treatments for many is ‘trial-and-error’. Lots of people had an array of products they had used for a while and then had to stop. Ele used bath oils for a while before it irritated her skin. The costs add up and could put people off trying new things or buying them again. Aman found a prescribed soap substitute worked well for his skin but he hasn’t got it on prescription again as he doesn’t want it to be a regular expense. Hazel says her last round of prescriptions was “a really big chance to take” – there were many things she was trying for the first time and the prescription charges added up.
It’s quite expensive [laugh]. Because you, it’s so frustrating. I’ve got a whole bag of products upstairs, like quite nice ones. Cos obviously you buy the more expensive ones, thinking ‘this is gonna help and it says on the, thing like, “It’s gonna change your life.”’ And then you buy it and the first time you use it you know that you’re never gonna be able to use it again. And then you’re trying to fob it off on other people. So it’s quite expensive to go through that and it’s really frustrating. And a lot of companies don’t provide with samples. And I think that’s really annoying. Because when you’ve got like an allergy, cos if you go to like Lush or somewhere you can get a sample. The Body Shop sometimes do samples. But in Boots you can’t do that and so you end up spending a lot of money on things that then you can’t use. And it’s the same with prescriptions. So if you get prescribed something that then doesn’t work, you’ve spent like the prescription charge on that and then you can’t get the money back. You can’t get a refund on your prescription when you’re like, “This didn’t work. Why did you give this to me?” You just have to buy it again. So like it is annoying financially. And you can’t use the cheap like basic stuff because the cheaper it is probably the cheaper the ingredients are. Some cheap things are fine. But a lot of them, yeah, they’re filled with filler ingredients that aren’t good for you. So like financially it’s a bit of a pain.
I reckon doctors and GPs should…I mean a lot of them are very understanding, but they tell you the same thing; I want to hear something different that isn't going to be, "Oh I'll just give you these…this cream," and it's like, well I don’t need anything from that, it's just me paying for more stuff, like it probably won't even work. They should do like trials and they give you like a free sample and try it for like a week I reckon.
Why I don’t want to go to the doctors and I don’t want to get more prescriptions because it just costs so much. Like, I think once I had to fork out sort of about £36 worth of medications just for one particularly bad flare-up but this is my problem – like, if… the doctor would just let me go to the dermatology department and the dermatologists could see and say, "Hey, we should do this; hey, you should that," you know, "We can go from here; I know what this is; I don’t know what this is." Then, you know what, I wouldn’t have to be forking out tons and tons and it's just - it's one of those things as well, it's yeh definitely, I think when you're small and you’re under 18, it's OK because, you know it's all free but… if you're not then [laughs] it's crazy amounts of money just to... and then if it doesn’t work you're like, 'What, I spent £40 on nothing,'
Getting a big quantity of prescribed treatment such as emollients in one prescription could save money and avoid repeat trips to the doctor, but smaller sized bottles/tubes are useful too. Evie likes having small bottles of emollient as they’re easier to carry but she says it’s not worth getting just one for the prescription charge.
Lots of people thought ‘natural’ products and a healthy diet were good for the skin but usually more expensive. Ele tried a cheap shop-bought moisturisers but it was perfumed and sat on her skin instead of absorbing. Not everyone agreed that expensive products were better though. Gary had tried lots of different shop-bought moisturisers, varying in price, and had found a cheap one to be the best. Hazel and Georgia prefer bath/beauty products that are ‘cruelty free’ and not tested on animals.
Since I got it for free, he’d give me like six pumps of my Diprobase and like five tubes of my Betnovate and the other one. So that meant that I was fine. I didn’t have to think about them running out, well not for a long time, and think about being cautious of my use because of questioning and especially because I have to bathe in it, so well my moisturiser. So I was always worried that people were going to be like, ‘Oh, you used it really quickly.” And it’s like, “Well I have to wash in it, as well as use it several times a day.”
So that kind of relieved it knowing that I’d have some and knowing I didn’t have to go back for everyone one. But since I obviously don’t get it on the NHS anymore because I’m 20, it means I only get one. And then I have to pay as well and like, if it was, if they gave me several pumps or something I think it would make it better. But also with the pumps they’re massive. So I used to get tiny tubes as well when he was giving me everything.
Okay.
But now I pay for it, they only give me a pump and not the tiny tubes to carry around with me for everyday use. So it’s made it a lot, a lot harder, yeah.
And then, about a year ago, sort of switched to using more like natural things to wash with rather than like the what are they called… like, yeah like steroid or prescription things to wash with. So yeah, that was a really good change to switch to like natural products rather than things with lots of sort of chemicals in.
That really helped yeah.
Did you sort of go through a decision making process about making that change?
Yeah. So, it was partially to do with money cos it was quite expensive to get the prescriptions once I wasn’t like of age to get that. But also, just I just found that it was better for my skin and more of a… that it was more hydrated after using things like that.
Some made their own home remedies to save money. However, they found ingredients like Manuka honey are expensive. Ele worried that if the honey made her eczema worse, she would be “literally washing [money] down the sink”.
Extra costs of having eczema
Shams said there’s an “uncalculated” costs of eczema. He gave the example of doing laundry: emollients get on his clothes, meaning he has to wash them more often and use extra detergent to remove the marks. Others buy particular kinds of washing-up liquid (which don’t trigger their eczema as much) and rubber gloves. Aisha and Ele have to throw away razors after shaving with them just once. Some people talked about there being an extra cost of some foods when avoiding triggers, such as buying alternative products like goats milk instead of cow’s milk. ‘Healthy’ diets were sometimes seen as more expensive too. Traveling to medical appointments can mean taking time off work and the cost of transport. Cat sometimes got taxis to phototherapy sessions.
Because I lived on my own in second year then I could sort of buy stuff that I knew didn’t irritate my skin like I picked my soaps and thing very, very carefully whereas shared accommodation then you sort of just use what people have, what people have bought and things like that and share the costs like when it was my turn to buy stuff then I would buy stuff that I knew I could use quite easily. But other people didn’t have those constraints obviously so they’d just get the cheapest stuff and cos students, but that presented quite a few issues for me and also with shared accommodation and, you know, people get drunk stuff happens and stuff goes missing so the number of gloves that I went through was just ridiculous and it was pretty much a weekly purchase in one of my houses so yeh which was frustrating. And also going to put then on and someone else has used them and just somehow filled them with water I don’t understand how people do this, it’s like I buy these so my hands won’t get wet, just shove my hand in like clod clammy water all at the bottom it’s just, brilliant [laughter] fantastic.
I can’t use shaving creams a lot of the time and disposable razors just tear me to shreds but they’re such, this is the thing it’s so expensive like hair removal products are so expensive so I do just go for cheap disposable razors because I can’t afford to be shelling out, you know, 12 quid per time for razor stuff and I just use conditioner really for like shaving cream and stuff, I cannot dry shave at all it’s got to be done in the shower and mainly use conditioner because a lot of shaving foams just irritate my skin.
Some people talked about things they saved money on because of eczema. Cat doesn’t buy perfume because it triggers her eczema and has cut down drinking alcohol since starting on immunosuppressants.
- prescription medicines (under NHS England: free for those under 16 years old, free for those age 16-18 in full-time education, free for those with a HC1 exemption certificate) – including emollients, bath oils, soap substitutes, steroid creams and antihistamines
- shop-bought products, such as tubigrips and ‘eczema-friendly’ cosmetic/bathing items (e.g. moisturisers, shower gels, shampoos, deodorants, sunscreen, hair removal products, make-up)
- private healthcare (such as paying to see a dermatologist privately rather than on the NHS)
- alternative and complementary therapies, such as homeopathy and acupuncture
- household products, such as laundry detergent
- costs of food (e.g. avoiding triggers and having a ‘healthy’ diet)
- expenses for getting to medical appointments, e.g. travel costs and time off work
Sarah first heard about Protopic through a friend who’d seen a private dermatologist.
Sarah first heard about Protopic through a friend who’d seen a private dermatologist.
Vicky has a Prescription Pre-payment Certificate but thinks people with eczema should qualify for free medicines.
Vicky has a Prescription Pre-payment Certificate but thinks people with eczema should qualify for free medicines.
Yeah. With the monthly certificates for prescriptions, when did you start doing that – would it have been straight away?
When I came out of education I started doing it straight away cos I was like, yeah, this, I’m going to have to, so yeah.
Do you remember where you found out about those certificates for prescriptions?
My pharmacist actually told me because well, I’m in there every week [laughs] like they know me in there. And I was doing my prescription once and I said to them, “I’m going to have to start paying soon,” and she went, “Why don’t you do it monthly?” I said, “I didn’t know you could,” and she said, “Yeah, you can,” and she gave me the website you can do it on. And I didn’t know about it, I didn’t even know you could.
Prescription medicines were the main financial cost of eczema talked about by young people. Some received their prescription medicines for free, others had to pay. Often parents had been in charge of sorting prescriptions and it could come as a shock to young people to learn that they could have to pay for their eczema treatments in the future.
Many people used a mixture of prescribed treatments and shop-bought products. The costs of these were sometimes compared. Alice thought prescription medicines are a “rip off” whereas Naomi and Aman think they’re reasonable for the quantity/quality. Some people put off seeing a doctor because of the prescription costs and tried shop-bought things instead. Some emollients are cheaper on prescription than bought from a shop, while others are the opposite.
Alice doesn’t get prescribed emollient but still finds shop-bought moisturisers add up.
Alice doesn’t get prescribed emollient but still finds shop-bought moisturisers add up.
So in that situation would you sort of think well I’m already using moisturiser, it’s not an £8 thing to fork out in one go type of thing?
Yeh for me I'd rather just use something that I can buy a bit cheaper. I mean like my friend with it really bad on her hands, she has to fork out a lot more money to control it because it is something that impacts on her so much but I’m a bit of a cheapskate so I don’t, I just use Vaseline [laughs].
Aadam finds Vaseline works well for his skin. Now that he can no longer get it on prescription, he and his parents look out for special offers in shops.
Aadam finds Vaseline works well for his skin. Now that he can no longer get it on prescription, he and his parents look out for special offers in shops.
Shams’ prescriptions are free during sixth form, but sometimes has to buy ‘emergency’ treatments.
Shams’ prescriptions are free during sixth form, but sometimes has to buy ‘emergency’ treatments.
But at the time it was really sort of essential for, for them to keep going.
Sarah applied for free/reduced cost prescriptions (the NHS Low Income Scheme) whilst working part-time.
Sarah applied for free/reduced cost prescriptions (the NHS Low Income Scheme) whilst working part-time.
Trying lots of different eczema treatments
A key thing about eczema treatments for many is ‘trial-and-error’. Lots of people had an array of products they had used for a while and then had to stop. Ele used bath oils for a while before it irritated her skin. The costs add up and could put people off trying new things or buying them again. Aman found a prescribed soap substitute worked well for his skin but he hasn’t got it on prescription again as he doesn’t want it to be a regular expense. Hazel says her last round of prescriptions was “a really big chance to take” – there were many things she was trying for the first time and the prescription charges added up.
Sarah has lots of prescribed and shop-bought products she’s no longer able to use.
Sarah has lots of prescribed and shop-bought products she’s no longer able to use.
Naomi thinks free samples of medical treatments would be good.
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Aisha thinks a dermatologist could help her save money with more tailored treatments.
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Lots of people thought ‘natural’ products and a healthy diet were good for the skin but usually more expensive. Ele tried a cheap shop-bought moisturisers but it was perfumed and sat on her skin instead of absorbing. Not everyone agreed that expensive products were better though. Gary had tried lots of different shop-bought moisturisers, varying in price, and had found a cheap one to be the best. Hazel and Georgia prefer bath/beauty products that are ‘cruelty free’ and not tested on animals.
GPs have given Anissa different quantities of eczema treatments.
GPs have given Anissa different quantities of eczema treatments.
So that kind of relieved it knowing that I’d have some and knowing I didn’t have to go back for everyone one. But since I obviously don’t get it on the NHS anymore because I’m 20, it means I only get one. And then I have to pay as well and like, if it was, if they gave me several pumps or something I think it would make it better. But also with the pumps they’re massive. So I used to get tiny tubes as well when he was giving me everything.
Okay.
But now I pay for it, they only give me a pump and not the tiny tubes to carry around with me for everyday use. So it’s made it a lot, a lot harder, yeah.
Hazel prefers ‘natural’ bathing products and thinks they are better value than prescription equivalents.
Hazel prefers ‘natural’ bathing products and thinks they are better value than prescription equivalents.
That really helped yeah.
Did you sort of go through a decision making process about making that change?
Yeah. So, it was partially to do with money cos it was quite expensive to get the prescriptions once I wasn’t like of age to get that. But also, just I just found that it was better for my skin and more of a… that it was more hydrated after using things like that.
Extra costs of having eczema
Shams said there’s an “uncalculated” costs of eczema. He gave the example of doing laundry: emollients get on his clothes, meaning he has to wash them more often and use extra detergent to remove the marks. Others buy particular kinds of washing-up liquid (which don’t trigger their eczema as much) and rubber gloves. Aisha and Ele have to throw away razors after shaving with them just once. Some people talked about there being an extra cost of some foods when avoiding triggers, such as buying alternative products like goats milk instead of cow’s milk. ‘Healthy’ diets were sometimes seen as more expensive too. Traveling to medical appointments can mean taking time off work and the cost of transport. Cat sometimes got taxis to phototherapy sessions.
Ele finds that household cleaning products that don’t irritate her eczema are expensive.
Ele finds that household cleaning products that don’t irritate her eczema are expensive.
Hair removal is a cost for Ele to consider.
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