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Alopecia (young people)

Money and alopecia

Young people talked about the money they spent on managing their alopecia. Costs included:  The costs associated with alopecia varied from a little to a lot, depending on what people used. Becky thought she must have spent at least £1,000 over the 10 years she has had alopecia on different hair shampoos and hair thickening products. A few people mentioned savings because of their alopecia, such as not needing haircuts or to buy shampoo for those with fully bald scalps.

Some people talked about entitlements to wigs provided free or at lower cost on prescription from the NHS. If a person with alopecia and their dermatologist agree that a wig would be helpful, the dermatologist can write them a prescription. Usually children and young people under the age of 16 or those in full time education under the age of 18 are entitled to some free wigs on prescription. Emilie and Rosie, both age 18, have alopecia universalis and said they are entitled to two free NHS wigs a year. Other prescription costs include for treatments, including those containing steroids for people with alopecia areata.
 

Professor Moss explains the NHS allowance for wigs.

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Sex: Female
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So if people decide they definitely would like a wig, then they are available on the NHS. There's a limit to two wigs per year. And you don't get the full cost of the wig. Sometimes the patient has to pay a proportion of the cost. And what happens is, they have to be prescribed from hospital, the GP can't prescribe them. So the hospital doctor, dermatologist, will fill in what's called an Appliance Form. They give that to the patient or the parent and there's a limited number of centres, places, that provide wigs, that work with that particular hospital. So they'll advise on where to go to. They go along there, choose a wig and then the supplier will send the invoice to the hospital, so the hospital pays. The other limitation is that only synthetic hair wigs are available on the NHS. You can't get natural hair wigs on the NHS. They're quite expensive. And you do need to pay for those. I think you can get a proportion of the cost back from the NHS, but certainly not the full cost. But having said that, acrylic wigs are very, very effective. They're very, very convincing. And the only problem, particular problem I've heard is that if they get too hot. So if someone's, you know, gets too close to the stove when they're cooking [laughs] you can sometimes get a kind of frazzling effect with the acrylic which you wouldn't get with a natural hair wig. So obviously you have to be careful with it. But wigs, the acrylic wigs, are very, very good. And if it's been well fitted-, not many people can fit children but, you know, there are suppliers who can do that, they can be very effective and make a huge difference to people's lives.
 
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Hannah hadn’t known that she was eligible for free NHS wigs and had been buying her own wigs for a few years.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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It was really hard, because it’s like you want to invest in something, but you have no idea about it. So, you just turn up to a shop and it’s like, when you’re going to buy something and you have no information on it and it’s really hard to kind of understand, there’s all these different things and different prices and you don’t know if that’s good or not compared to what it is. And like, when I first got the wigs, I didn’t know about different types of wigs; so when they were telling me it was like a monofilament top and it means like you can see like, it looks like it’s coming from the scalp, it looks like you’ve got skin underneath. And that was amazing to me. And like, I thought that’s really cool. And then, a couple of years later I found out about lace fronts, which looks like it’s coming from your scalp even more at the front, so it’s even more natural and so it’s like-, I’ve noticed, I’ve kind of gathered information over the years, so from when I first got my wigs and also paying like, the biggest thing like I regret is that I didn’t have information on being able to get free wigs. So, they didn’t tell me and when we did ask if I could get wigs on the NHS, they said ‘no’ and we don’t really know why. But when I turned 18, as soon as I turned 18 they said I could get wigs, but then I had to pay for a prescription and it was £65 per prescription. So it, yeah, that was really frustrating, cos then I’d been paying hundreds of pounds for these wigs when I could have been getting them free. And that was quite annoying [laughs]. But over the years I’ve kind of picked up all different wigs. So, I think I’ve got about 20 at the moment. 

Oh wow. 

Yeah. I like to change my look. So, I change it all the time. Yeah.

Could you tell me a bit about the variety of wigs that you’ve got?

Yeah, I’ve got everything from kind of, standard like really nice like brown and blonde. I’ve got a brown and a blonde human hair wig. And then, I’ve also got a pink, purple and blue wig, just for fun. And I’ve got different types, so I’ve got lace front. I’ve got a suction wig, which is really cool. It, but I need to be completely bald for that. So when I was, like shaving my head down completely smooth, I could wear the suction wig and it’s like silicone, so it’ll just stick to your head. And then, like other times I’ve got wigs that, when my hair grew back, I got a wig with like clips in it so I could secure my hair down a bit. So, yeah, it’s just, I’ve got all different – it’s quite fun.
 
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Emma tops up the NHS wig prescription with her own money so that she can get a human hair wig rather than a synthetic one.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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In terms of like getting the wig, I’m entitled to like getting prescriptions per year, which equate to like, I think it’s like two synthetic wigs. Which equate to like, I think it’s like sort of £700 or something. But because, like the synthetic, synthetic wigs are good, but I get real hair ones just cos I think it’s, if I’m gonna have it for quite a long time I’d rather them look more natural. I can do more things with them. But however they are more expensive. So I have to like put the additional money in myself. But I mean the one I’ve got at the minute is, you know, the same colour as, the same colour as my old, but as my natural hair. And I’ve had it two years and it still looks like brand new. So I’d rather pay the extra and, you know. But I’m always entitled to that free prescription every year. So from the NHS, that’s good.
There are different ways of obtaining a wig from the NHS. Rosie goes to her local hospital prosthetic department and chooses a wig there. Emilie takes her prescription to a local wig shop which is one of the NHS wig suppliers. Imogen felt that human hair wigs should be available free on the NHS in addition to synthetic ones, as many people could not afford to buy human hair wigs themselves. People said their wigs usually lasted six months to a year and a half, depending on how much they used them.
 

At first, Arti’s dermatologist did not refer her for an NHS hair wig because her hair loss wasn’t severe enough. A wig she bought herself cost £100-£200.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I know I’ve talked about I paid lots of money for this but I know you can get one on the NHS. In terms of trying to get NHS wig I found it was pretty much impossible for me. When I went to the doctor apparently I hadn’t lost enough of my hair when I was trying to get help on the NHS with wigs. They said I hadn’t lost enough of my hair. Apparently I had to lose more than 50% of my hair before I was allowed that. So that’s when I was sort of looking at partial hair wigs. And then after that, when I went to the doctor they sort of said, “Although you’re-, you’re entitled to it but you have to fill out all these forms,” and stuff and I was just sort of needed it quite quickly so I didn’t bother with that then. I am planning on trying to get the help but I’ve been finding it’s quite difficult and I-, I don’t know if that’s just me, like-. I have a medical exemption card because I also have thyroid problems. Oh yeah, that’s something else also linked with alopecia, I forgot to mention. But yeah, I also have thyroid problems and so I have that a medical exemption certificate but that’s not very helpful and I still got to fill out like a HC1 Form and there’s quite a few other forms to like detail your needs and so yeah, I haven’t got round to that. And you’ve got to fill that out like quite a few times in the year and stuff. So I think because I’m quite happy with my wig at the moment I’ll sort of wait until like a couple of months until I sort of maybe thinking about having a new one and hopefully I’ll get one. 

But it was quite annoying when, when I first started moving to wigs that it wasn’t covered by the NHS because, yeah, it’s quite-, wigs are very large purchases which I didn’t realise at all but they are like quite a lot. I don’t know how much the cheapest ones are but I’ve sort of paid like between £100 and £200 which is a lot for me [laugh].
Others bought their own wigs, hair pieces and extensions. The price of wigs can vary a lot, depending on the type of wig cap (e.g. lace front, monofilament base, suction base), whether they are made from human or synthetic hair, and if they are a full or partial wig. Kayla likes to buy wigs with a lace front but says they need to be replaced every two or three months because the hairs fall out which can be expensive. Hannah bought a human hair wig when she was a bridesmaid at her sister’s wedding, even though it cost much more than she usually paid. Some people bought special tape to attach their wigs securely to their scalp and this could also be expensive. Kayla pays £40 for a pack of tape which usually lasts her about two months.
 

Annie Y compares her experience of buying a real hair wig with the NHS wig she had in school.

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Age at interview: 23
Sex: Female
Age at diagnosis: 3
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I'm really lucky cos my parents can afford to pay for real hair wigs which is like a bit of a luxury cos wigs on the NHS are like synthetic and really horrible and like not nice to wear. But we found this guy who's like ab-, it's absolutely amazing. He's just a hairdresser but he gets in these, a wig like this and it'll just be like all long hair, like not cut, and I go and I just tell him how I want it cut. So it just like comes like this, all like, it's all like real hair. And then so I can, it's like I can pick whatever I want it to look like, and obviously, as you can tell, I just kind of generally try and get hair that looks like other people's hair, like bog standard sort. You don’t want to like-, if you're trying to like blend in you don’t really want to have like a crazy hairstyle. But yeah, it's really nice. They last for like between six months and a year and I, yeah, it's just really like manageable. You like just wash it completely normally and like hair-dry it and use straighteners, and it feels exactly like normal hair and, especially having the hair cut, I think like if you buy wigs from shops or like on the NHS they're already cut into styles and they look a bit like wigs, if that makes sense. Whereas, cos I just get it cut like a normal person has a haircut it, again I think it just makes it less obvious. Which is like a massive luxury that I get to do that, cos it's not like cheap.

Have you, like prior to this did you look into like the NHS wig schemes?

Yeah I think my mum always tells the story where, when I was younger, maybe when I got diagnosed, no, maybe when I was like a little older, I had this like wig from the NHS and then I just like went to school in it, and then like brought it home in a plastic bag at the end of the day cos they're just like really horrible and itchy and like really uncomfortable. And then I think, I think I just wore bandanas all the way through. I think I just got a bit curious about it, and then we, we sort of went to this place in London that, that is kind of similar to the one I have now but just like outrageously expensive. But we didn’t know cos we didn’t-, there's not very much of like, you're just Googling, like it's like hard to know like where to go, what to do. And then we realised that you didn’t have to pay that much money for them, like that was a thousands of pounds. And then we found this guy and I've been going to him like literally ever since I got one wig there, and then I've only ever been to him.
 

Beth buys cheap synthetic wigs from the internet which cost between £30-£50. She hasn’t ever bought expensive wigs.

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Age at interview: 24
Sex: Female
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The actual wigs themselves cost-, well some of them can be up to like hundreds of pounds. Mine only tend to last like six months, tops. So I just buy kind of cheap ones on the internet, that are usually about £30 to £50 each. So say you're doing that what, twice, three times a year. It does add up slightly. But then I don't have to buy shampoo each week or things like that. You do have certain- like a conditioner and spray, and like fibre oils to put on it. But they-, yeah. They're about £5 a bottle, or so. And they tend to last a long time, so that way it's quite good. You can style it exactly the same. But yeah, certain wigs are certain-, like different. So something like this one, I can straighten as well if I wanted to. I don't like doing it, because it ruins it. But, yeah. So you can do different styles. And obviously like the expenditure, you can buy stuff to put into it, but. Yeah. Like if you wanted to, you can go and get kind of wigs that will stay on through anything, that are really, really comfy to wear, that tend not to kind of deplete as quickly as such. But they're really expensive, so. Yeah. Obviously that's a lot of money going towards something that you're not a hundred percent sure if it'll actually last, so. Yeah. I've never had one [laughs].
Other people bought cheaper wigs which cost under £50 off the internet. Emily found “a really lovely wig” for £2 on eBay. Hannah and Emily bought lots of different wigs, some were fun and cheap (about £10) and, as Emily says, “A little pick me up”. Others felt it was important to spend a bit more on wigs which they hoped would last longer and look more ‘natural’. Arti’s parents bought her a human hair wig in India for cheaper than she would pay in the UK. Kayla’s aunt, a hairdresser, can get hold of good quality wigs at a cheaper price. In addition to the cost of wigs, many talked about needing special shampoos and products to care for their wigs.
 

Emily has bought many different wigs, some more expensive than others. Having the option of wearing a better quality wig when she goes out is important to her.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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So I mean with the wigs that I have because I really-, I think I would-, ‘cos I was so upset about having alopecia to start with and the fact that I would have to probably shave my hair off at some point, or lose my hair, I did go a little bit crazy in terms of buying wigs and while I only bought cheap ones obviously if you buy like ten cheap ones it ends up adding up but I think that’s been kind of invaluable for me just to have those there and I think I wouldn’t have got through it as well as I did if I didn’t have that option there. So it’s a good job I have an overdraft. But definitely the more expensive ones which are, I mean I have one which has like a lace front so it looks like I have a hair line and a parting, like a monofilament parting, so it looks like skin which is something that is really important to me in terms of going out. I mean I, I go out in public bald quite a lot but if I was going on a night out I wouldn’t necessarily feel comfortable going out bald because I mean drunk people make a lot of comments that they wouldn’t necessarily make if they were sober. So that’s been really useful because a lot of people can’t tell that it’s a wig and it’s just nice to kind of slip back into normality every so often. But again for a wig of that kind of quality it’s a lot of money. And I suppose it’s such a kind of niche market that they have to charge that much, but I do think it’s a shame that people are probably missing out, especially young people, and I think it’s really important for young people to have those options available to them and they probably can’t because of the cost. So yeah I mean, it has cost me a lot of money in wigs and stuff. And also in products like I mean products for the wigs and also products for my head, like I have to shave my head like ‘cos I have patches of hair and I have to like, I was using some things that are recommended to me in like a last ditch attempt to try to grow my hair back. And I mean I kind of knew they wouldn’t work, but I still dropped so much money on them just because when you feel like you have to try anything that you possibly can to bring it back. And I’ve given up on all that now so now wigs are my kind of vice. But yeah it does add up. It definitely is quite expensive.
As well as wigs, some people had bought other products and procedures. Meghan has spent a lot on hair extensions during the 10 years she has had alopecia. Beth had her eyebrows tattooed on while on holiday in the Philippines at a much cheaper cost than is usually charged for it in the UK. Krista and Hannah had their eyebrows tattooed for free by friends or relatives.
 

Kayla researched online and found a tattooist who did her eyebrows very well and at half the cost of other people.

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Age at interview: 20
Sex: Female
Age at diagnosis: 4
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She actually had a book so she takes photographs of everyone’s eyebrows that she does and she had like section in her book of people with alopecia, specifically areata, who get it done. So that was quite cool. I didn’t have to explain why my eyebrows were falling out. She knew and she has been doing it for I think 10 years and she was like half the price of anyone else that I looked online. And she, you go twice and then she gives you a free third time one to make sure that they’re perfect, like she’s really good. So that was good to just go and get that done and not have questions asked and make me feel like self-conscious about it. She knew what she was doing so yeah, that was good. I was pretty nervous turning up like, ‘oh my gosh, what if she makes them ugly?’ But we were there for three hours like just drawing them on and making them perfect so that was good, ‘cos I kind of didn’t know what to expect. I think, when people say, you have your eyebrows tattooed on, I mean you have like this image in your head, in your head of like ladies who’ve just got like black or like bad coloured eyebrows that have like faded and look terrible, so I was pretty nervous. But no, she’s really good. 
Another cost for some was buying products for their hair and scalp. Many people said they tried various products, including hair regrowth products. Grace said the minoxidil she used was reasonably cheap because her parents bought it in bulk. Trying out different products in a trial-and-error way could be costly as well as time-consuming.

Parents and other family members usually paid for or helped with the cost of wigs, hair products and treatments. This includes private treatment and alternative therapies. Ben saw a trichologist (hair specialist) privately. Michael had a private appointment with a dermatologist because the appointment waiting time on the NHS was long. Annie X has tried various alternative therapies, such as health kinesiology which cost £45 a session. A few people were concerned about costs and how they would pay for products when they went to university or were working. Those at university talked about how the costs of wigs and products added up which was hard on a student budget.
 

Annie X says alternative treatments, hair products and wigs have cost her parents a lot of money. She is very grateful for their support.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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I don’t know how much exactly my parents have spent on it, but a lot, because the treatments are for the lasering are around £45. Health kinesiology is £45-ish, again. The wig was £300. The amount of Couvre [scalp concealing lotion] we’ve bought is a lot. There’s just so much stuff and that’s probably the thing that I hate most about it is just because I feel like I’m costing my parents both mentally, physically and financially which I hate doing. And I’ve asked them not to, but it’s like my mum can’t not do anything about it. But yeah, cos people who don’t, who don’t, aren’t as lucky as me or aren’t as privileged as I am and don’t have that money to spare on treatment, it will, it could be a lot harder. So I’m really lucky that I’ve been surrounded by like, I’m in an environment where my mum can just say, “That’s fine. We’ll just spend another £150 on it” or, “”That’s fine, we’ll just spend another £300 on it”. So I really do owe my parents for all the help they’ve given me, because I couldn't do half, I wouldn't be having half the treatments I had if they didn't. 
 
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Michael’s mum paid for him to have private appointments with a dermatologist and a counsellor.

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Age at interview: 19
Sex: Male
Age at diagnosis: 13
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Can I ask a bit about finances, in terms of the dermatologist, private dermatologist you had eventually?

Yeah. I'm not sure how much it cost initially, my mum paid for it. But we only went to see him once or twice, it was more to reassure me about options and the condition itself. That I was okay, almost. And I think then I went into the NHS system after that. And it's been fine, really. When seeing the specialists, I feel much more comfortable than the team almost, because they don't have the same knowledge as the specialist himself.

I'd say my mum is the heaviest involvement in my life in general, as well as alopecia. It was difficult for her to begin with, because she had to deal with me being upset, and she had to maintain her like calmness to make sure that I wasn't getting stressed out as well. But she's been helpful throughout it and helped me with different treatments and stuff like that. And attempted to find, like- she’s done all sorts to try and help me become more comfortable with it. At one point when my self-confidence was especially bad, she took me to a counsellor to try and improve myself. And I went for a few weeks, and became a lot calmer. And then I felt I didn't need to go to that any more. And since, I've been quite calm, so.
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