Asthma

Finances and benefits

Asthma can affect people’s finances in different ways. People’s income may be affected by having to go part time, or give up work altogether. Jane Y felt that having to retire early had left her with financial constraints that she wouldn’t have had if she had been able to carry on working. Ann had left her full time job and was looking for something part time and less demanding, but being reliant on her husband’s income after a lifetime of being self -sufficient upset her. "I liked earning as much as my husband and feeling that we had an equal partnership. And of course that's changed". Jenny is now no longer able to work at all, and although she is hoping to do some part time work, is currently relying on benefits and her parents. She thinks sometimes people don’t always understand.

Sometimes people wonder why Jenny is on benefits and can’t earn her own living. ‘If you look at me… I look perfectly healthy’.

View full profile

Age at interview: 34

Sex: Female

Age at diagnosis: 18

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

This takes me on to one my little mini soap-boxes which is all about the – publicly, the people, like, “Oh, David Beckham’s got asthma, Liz McColgan’s got asthma”, you know, and you, and they’re like, you know, and they’re Olympic sports people or whatever. And they look at me and people say, “Why don’t you work?” “It’s well, because I’ve got brittle asthma”. “You’ve got asthma but you don’t work because of it?” “Yeah.” “But Liz McColgan and David Beckham have got asthma”. So it’s like, yeah, but it’s a very little word and it’s a very big condition and I am one end of the scale and they are the other and I would give anything to be their end of the scale but, you know, be able to go out and work and you think – my other soap-box is I get so cross when people say, “Oh, benefits scroungers, why don’t they go out to work?” I mean, if you look at me, you know, all my limbs work, I can move round, I can… I look perfectly healthy. But what I say is my power supply doesn’t work, you know.

Jenny explains what benefits she is entitled to, but feels the way the system is organised is unfair.

View full profile

Age at interview: 34

Sex: Female

Age at diagnosis: 18

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I get incapacity benefit and disability living allowance. Because I get incapacity benefit I’m not entitled to anything like income support or anything like that because apparently, technically I get too much. They have this, this lower threshold beyond which, well, this threshold says this is how much you need.

So you can’t get any more support if you get above that threshold. Well, it’s just like I’d like to see someone to try to live on that. ..It’s you know, it’s ridiculous. I’m actually waiting for a tax rebate because they decided to try and tax a load last year and they used the wrong tax code, so hopefully…

Tax the benefits?

Yeah.

Oh no.

That’s silly, I know, and then they tax your income… they tax your income support, oh, sorry, your incapacity benefit, so you’re just like, so the government’s giving it to you and taking it away from… you know, it’s just like, why?

Doesn’t make a lot of sense?

No, so they’ve because they got my tax allowance wrong or something, my tax code or something, so apparently I should be getting a rebate at some point. But disability living allowance is non-taxable and it’s none… its non- means tested. The idea being that it pays for your, it makes up the gap between your disability and a normal person. So, I mean, for me it’s like it pays for the car. But yeah, it’s just, it’s meant to counter, I mean basically what, I mean, some, some disabled people find it insulting because it’s basically saying, you know, give me this money and your normal, you know, this is how much we think it means differently for you to be disabled.

It’s kind of trying to put a monetary value on something that really you can’t necessarily…

Yes, but having said that, it’s money, it helps, as I say, pays for the car, it you know, like, because I used to use it to pay for my own car and then I discovered, then I found out about the Motability, and it’s brilliant. I mean, I buy a new car every three years, it pays for the insurance, it pays for maintenance, it pays for servicing, all I do is put fuel in it, basically.

So that is quite a help…

Yeah.

… for you.

Oh, yeah, and you get road side assistance as well, you get AA and stuff, which is great because people, for me, my car is my lifeline. I don’t have the energy or the puff to walk to the bus stop, to get the bus into town, to, you know, if I did that I would be knackered before I even got into town … you know. I can hop in my car, park in a disabled space, right in the centre of town, or park on a double yellow line in front of shop in, you know, if I’m going somewhere smaller, and, you know, it means I can get out and about.

If I didn’t have the car I’d be housebound because it’s sort of half mile to the bus stop or, you know, even, even on a good day I can get quite puffed out doing that, as I say, if like today they’ve mowed all the lawns around here, you know, the council have done all the lawns, I’d never make it to the bus stop.

Jenny feels resentful that there is little financial help available for her parents who act as her carers. "They get no financial support because I’m their child. If I was a stranger who lived in the house and they had to support me, they’d get help."

One problem is that, unlike a physical disability, asthma comes and goes and its effects are less obvious and less predictable.

Jane finds it frustrating that it’s so difficult to get benefits because of the unpredictable nature of asthma ‘you can’t say you’re going to be poorly for the next six months, but you know yourself you will be’.

View full profile

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I get frustrated that you get asthmatics, severe asthmatics get very little help from the State. I don’t mean from the NHS. I’ve always had brilliant help from them, but if you want to apply for benefits, oh its unpredictable, you know, you can’t get, I’ve got a blue badge now. But I had great trouble getting that. Asthmatics, bad asthmatics have great trouble getting Disability Living Allowance (now replaced by Personal Independence Payment - PIP ) because you can’t say, you can’t say you’re going to be poorly for the next six months, but you know yourself you will be [laughs].

So that kind of thing frustrates me. I get I get that people still don’t seem to see that things are I think people think, especially perhaps more so now that asthma is just a trivial thing because 80% of asthmatics have it very well controlled compared to what it was when I was little. But they don’t seem to recognise 20% of us are wheezy all the time and it’s very difficult to manage.

Other help available includes Motability. Through Motability, people who get higher rate disability living allowances can exchange part or all of that allowance to lease the car of their choice. Jenny explained that as part of Motability she gets free roadside assistance.

Given the need for regular medication of various types, prescription costs can also be a worry. Some people may be eligible for free prescriptions (for example people who are retired or on benefits) but many people have to pay, and some wondered if the costs could make some people decide to stop taking some of their medicines. If you pay for four or more prescriptions in three months, or for 13 prescriptions or more a year, a Pre-Payment Certificate can help. Pre-Payment Certificates are like season tickets, allowing people who need regular prescriptions to save money through a pre-paid set fee for prescriptions, regardless of the number of medicines they need.

Pre-payment certificates helped people to budget and were easier on the pocket. Jane felt it was quite a good deal, working out at around £2 per week. She could see giving all people with asthma free prescriptions ‘would practically bankrupt the NHS’, but at the same time felt it was unfair that people with asthma living in England do not qualify for free prescriptions. Jane said that this ‘annoys me more than anything’ her suggested solution was that everyone (unless they were on benefits) should pay a flat fee so there was no discrimination between conditions. Several supported the Prescription Charges Campaign which encourages the government to bring England into line with Scotland and Wales where prescriptions for people with long term conditions are free.

Catherine explains how costs can mount up when you have a chronic condition.

View full profile

Age at interview: 39

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

In the old days I used to buy the prescription as you went along and being a single person sometimes on a limited income you had to make a decision, were you going to buy that prescription or were you actually going to buy something else or pay your gas bill.

Because they are that dear. And I wasn’t able at that point a few years ago to have been able to buy the prepayment card because obviously that’s a lump sum.

And you have to pay it in one go. Now I do that because it is hugely cheaper. It’s still very costly but it is cheaper than buying them as you need them. And I think also it’s, it’s easier and it’s less of a worry because you know it’s already paid for, you just go in, whatever the doctor gives you get it.

And you take it. But having asthma isn’t just about the cost of the prescriptions, it’s the cost of lovely hospital car parking charges. It’s the cost of fuel getting there.

It’s the cost, depending on your job and how it’s salaried, are you losing pay because you’re not there. You know, if you’re an hourly paid person you might not get any money when you go into hospital.

And you’ve got to sit around for hours and wait for scans or blood tests or whatever. There’s that cost. And there’s the cost from your home point of view. If you’ve got to alter your home.

Andreane feels it’s unfair she has to pay for asthma medication when people with some other conditions get free prescriptions.

View full profile

Age at interview: 48

Sex: Female

Age at diagnosis: 33

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I have a pre paid prescription. I know I pay a certain amount a year and therefore whenever I fill out my form I don’t have to pay there and then because it’s already covered and it’s deducted from the amount I’ve prepaid and I’m grateful for that because I’m prescribed at least two sets of salbutamol, two sets of seretide. I also take tablets montelukast, and also Phenexa, phenexadrine. So you’re looking at about thirty quid a month at least.

So pre paid wise, it pays for itself.

And you don’t think it should be, you think it should be on the NHS?

I think it should be recognised like cancer or diabetes or long term illnesss, and are free for, free for the patients, why shouldn’t we be treated equally in that sense? No other reason, no special treatment, just respect for the equally like cancer or diabetes. It’s a long, I now know I’ve got asthma for the rest of my life. So why should I have to pay for all my medication when no disrespect to someone whose got cancer or diabetes, they don’t have to.

Travel insurance had been difficult to obtain, or more expensive, for some people if they were judged to have an increased risk of being hospitalised because of their history of past hospital admissions, or the severity of the asthma. Jane said that the cost of her travel insurance was more than half the cost of her last holiday. Susan had managed to find a good deal through her bank.

Susan explains some of the difficulties when you apply for travel insurance. She advises people to shop around. [AUDIO ONLY]

View full profile

Age at interview: 31

Sex: Female

Age at diagnosis: 18

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

The only thing that is a bit of an issue is if you want to go abroad and getting travel insurance. If you’re on more than two inhalers it can be really difficult to get travel insurance that covers you because I, all the cheap ones that you find on the comparison sites they have exclusions Asthma is always of the exclusions. And you ring them up and they’ll say, “Oh yeah, if you, if you’re on more than two inhalers then we won’t cover you”.

And because I’m on three inhalers and a tablet, that’s four different medications which they count as really high risk. Which is kind of crazy because if I only took two of them, if I just decided not to take two of them I’d be much more of a high risk. Because if I take them all I’m actually really stable. But if I didn’t take two of them [laughs] then you could guarantee I’d have an attack.

So would they insure you but with that as an exclusion? Or can you not …

Yeah. Well, yes, they would but they kind of say, “Well, if, if you have any treatment that’s related to your asthma”, that’s like if you broke your leg and then because of the pain you had your asthma got flared up they wouldn’t cover you for any treatment they gave you like if they gave you some extra oxygen. Even though the thing that caused the problem was the broken leg if it then affected your asthma they wouldn’t they wouldn’t, they would pay for the stuff that was just the broken leg but they wouldn’t pay for the additional asthma stuff.

It’s quite confusing then?

Yeah, it’s really …

Have you ever, have you found ways round it?

Yes, there are special insur, there, there are some insurers So it’s, basically what it comes down to is the cheap insurers won’t even touch you The kind of the big name type insurers will insure you but you sometimes have to, well you always have to pay more. And then there’s like specialist insurers who again you’re paying more but they’ll cover you [siren in background]… I mean, I, I have my insurance through, I ended up paying like for one of these bank accounts that you pay a certain amount each month and it comes with free travel insurance and because you’re paying quite a lot for the account... the travel insurance is quite good. And it does include some health conditions and, and my asthma is covered under that. I mean, to be honest it’s the only reason I have it because it’s actually, it’s no, it’s no more expensive than if I got it separately and there’s a couple of other benefits with it so it’s worth it for me.

Living with asthma can result in other less obvious costs too, for example costs of cleaning and changing furnishings and flooring at home to get rid of house dust mites (see ‘Exercise, diet, weight and other lifestyle issues’), and having to pay frequently for hospital car parking if you need a lot of appointments. Some people had employed a cleaner or someone to do the garden because these would be things that trigger their asthma and were best avoided, but this was not an option that everyone could afford.