Financial effects of chronic pain
Many of the people we talked to had found it difficult to continue work because of their pain. Expectations and plans often had to be drastically revised, which left people feeling frustrated and disappointed (see also 'Unemployment and return to work'). These interviews were conducted before the 2015 benefit changes but a lot of the issues are still relevant today.
Reflects on how her life differs from what she had expected it to be.
I'm lucky that I bought my flat before I got ill, before I went to university for that matter, because I worked for seven or eight years before I went to university. If I hadn't bought then I'd, dunno, I think we'd still be living with our parents, because there's just no way.
I mean my husband had to take a break from his degree as well, so he hasn't been earning decent money very long. You know, he finished his degree four years later than he should've done. So, you know, we haven't got any savings. We haven't had any foreign holidays. As I say, we haven't had any holidays, apart from visiting family, since our honeymoon five years ago.
So, financially, yes, it's affected us big time. Because of the kind of benefits that I'm on as well, because I do get incapacity benefit, I don't, I'm not entitled to help with prescription payments and I take rather a lot of drugs, about four to five prescriptions a month. So it's '6.20 a time, so that's nice, especially when you can only work twelve hours a week.
The incapacity benefit helps, it nearly covers the mortgage, not quite. It doesn't obviously cover anything else. Yeah, financially I expected things to be a lot different by now. You know, especially having got married to somebody who's also a professional, that would be by now he is just, but as I say, he's only just finished his degree, because of taking a gap because we couldn't afford to pay the mortgage because I was ill. So yeah, financially we're just completely different to what we thought we'd be.
Had to give up his well paid job and now has to be very careful with money.
Here again is where you have to change, not just your lifestyle, but the way that you look at things. You have to plan well in advance. In other words you have to save the pennies to get them any kind of present at all. But maybe to some people it would have been a major problem but money's never been the be all and end all to me. So it really hasn't.
As long as I have enough to get by on then that's all I ever look for. But it does pose a problem, you know. You just can't get up and go places that you would like to go, because you can't basically afford them. And there is no way I'm going to rely on the goodwill of good friends because that would soon wear thin. So you have to be very careful, you know. But I'm not, I'm not looking for anything for nothing. A few people are to be quite honest.
But I do have, I do have financial problems. Anybody in the same position, I can't really see how they could avoid having financial problems. To go on a simple trip to the town centre which is roughly about a mile and a half down the road. To get there and back costs me '10. Because I have to get a taxi there and a taxi back. It's 65 pence on the bus. Which would be '1.30 for anybody else. For me '10.
And so everything you do, every journey you make. It's not only got to be planned, it's got to be necessary as well and you've got to make it count. You can't just go for the sake of going and browsing. Because you can't afford to. And that's a limit you have got to put on yourself as well. Especially when you've had an endless, shall we say expense account.
Some people who had been in long term employment received full pay from their employers for the first three months they were off work, then half pay for the next three. One woman described the good sickness pay arrangements at her work while another, who had never had a paid job, explained that she was not entitled to some government benefits.
Her company has a good sick pay policy and she has a good salary but chronic pain still affects...
After surgery it was very expensive because I was going for acupuncture and I was going for therapeutic massage and it did drain my finances and basically you have to choose literally between doing one thing or another so I find that while I was paying to have a personal trainer to help me with my exercise so I didn't do any further damage or make my pain worse and then I was paying for a session that was like '60 a week you multiply that by 4, there's not very many people who could afford to have that amount of money of their income on a regular basis.
But basically when I did that I did nothing else. The personal training when I was off work that was different. I didn't do that because I was in the gym at very quiet times so the trainers that were there worked one-to-one with me but they, the therapeutic massage and acupuncture did drain me financially particularly because I am on my own with, with my son and whilst I get maintenance from, from my son's dad it doesn't compensate that's [son's name]'s childcare or my son's childcare costs so I think in one way I've been very fortunate.
I've not lost any pay because of my illness and when I went back, I went back I worked I think I worked up until 3 o'clock. We, we had a staggered regime that I talked through with Personnel that when I went back to work I didn't keep to it and I ended up making myself very ill with pain so I had to almost reset the clock again because I didn't do the hours I was meant to do I did double.
So I've been lucky I think because I have a profession. I think again my salary was maybe in the ball mark that makes it easier for me to cope but I did have to give up to have those things but I felt it was worthwhile because pain was so big in my life at that time that it was important to address it but for example now I would like to but I've committed myself to other things which financially means I can't afford to go and have the therapeutic massage and to be honest for, for someone I think with chronic pain it would have to be on a weekly basis.
Because normally they would only have to do like very small not manipulation but be very gentle with you and gradually built up because if they go too far then you end up exacerbating the pain and making it much worse. So you basically have to build up and it takes many weeks before you get the relief but when I did do it I did it for a long time and on some occasions it was twice a week, I did find it helpful eventually. I didn't think it was doing anything at the time but it did. So it's something I think was really worthwhile but expensive.
Has not worked so is not entitled to incapacity benefits but claims a top up disability benefit...
Then the income support qualifies you for the housing benefit which pays a percentage of your rent, it doesn't pay all of it, then you pay the rest of it through the income support you get, and then I also qualify for low level care in DLA, the disability living allowance, which just means that I can't prepare a meal in the first principles, I can't do all the chopping of vegetables, I can't stir an amount of food, I can't lift saucepans and all things like that, but I'm able to like dress myself and look after myself on that level.
And I get high mobility allowance which is an exchange for a mobility car, which is absolutely fantastic because the independence it gives you is just unrivalled, I mean to be able to go into town when I want to and not have to rely on everybody for lifts all the time, and to know that the car is, you don't have to pay anything extra for the car its all looked after within the scheme, its an absolutely fantastic scheme, it gives you the independence that you need.
But it is a very small amount of money to be honest and it takes a lot of planning and being very careful to live on it, especially when you're surrounded by all your friends who are also very highly qualified as you but are earning between 25 and 30 grand you know its hard to keep up with them, you can't go out an socialise in the way they do, but there again all my friends are so supportive I've never bought a drink in the pub ever, so you know they understand the situation and they don't expect me to be able to afford what they can, so I'm subsidised on a few levels there I suppose.
People who are declared medically unfit to return to work after six months may transfer to Employment and Support Allowance. For a person to qualify for Employment and Support Allowance a Work Capability Assessment needs to be carried out where you have to complete a questionnaire about how your illness or disability affects your ability to work and can include a medical assessment.
People under the age of 65 who need care and attention may qualify for Personal Independent Payments (PIP), while those over the age of 65 can claim Attendance Allowance. These benefits are not means tested and may be claimed by people who live alone, find it difficult to do domestic tasks, or look after themselves.
People under 65 who have difficulty walking may also get the mobility component of PIP if they need help with going out or moving around. These people can also apply for a disabled badge for parking (Blue Badge Scheme). Motability is a voluntary organisation which enabled some people to run cars, which made a big difference to their lives.
Claims mobility allowance and uses this to keep his car on the road which has made a big...
I'd say it all depends if they were mobile, some people need the care allowance, some people need to be looked after, I was on the mobile side, I needed the mobility to get about and I couldn't afford to keep the car going without having something like that.
I explained this to the doctor that came to examine me in the house and she actually says 'Well this is what the benefit is about' and she explained that and she says if I pass a medical, well if I fail a medical for this, I will be granted the Disability Living Allowance.
So I would advise anybody else to actually, if they are in a similar situation which their mobility is affected to go and get the mobility allowance because this really helps. It's about '40 a week and '40 a week is round about what I'd spend on petrol to get to the shops, to get here.
I mean I need a car to go any more than about 150-200 metres, to go 150-200 metres can take me an hour and a half if I've got bad pain. I go to shops that's about 500 metres away and I've seen me take an hour and a half, 2 hours, to get there and back when my pain is pretty bad but with a car even if you've got your pain you can get jump in the car, go, get your messages and come back again and be back in the house pretty quick.
Gives you a wee bit mobility, a wee bit of freedom, you can, if I go to the swimming pool, I can never go without the car. You need the car to go out, it's public transport just isn't in that area so I use the car, get to the swimming pool, relax about in the swimming pool, use the sauna, jump back in the car again, come back. If you're in pain at least you're home pretty quick. It doesn't affect my ability to drive for like half an hour at a time. Any more than half an hour it's just even sitting in a car is too uncomfortable so...
Many of the people we talked to said that the process of claiming benefits had been difficult and in some cases distressing, demeaning and degrading.
People sometimes felt that they were suspected of being 'malingerers' or 'frauds' and stressed that they really wanted to be able to work and that benefits should not be seen as 'charity'. Completing the forms could be difficult and time consuming and the medical assessments could be traumatic, although a few said it was less unpleasant than they had expected.
Says that some people who claim benefits worry about being thought of as a 'malingerer' but she...
Its like if you're entitled to income support or if you're entitled to DLA if you're entitled to it you should claim it, but there is an awful lot of people will sit back and say 'Well I'm not claiming that'. I mean they seem to think it's a stigma, that because you can't work you've got to claim income support 'Oh you're a malingerer and all the rest of it'.
Its just your life you have at the moment, it might change, it might not, but then again you've got to have the best of what you've got and to have that you've got to have all the benefits that you can actually claim, because if you don't claim they're going to sit in a wee pot somewhere and they're not going to do anybody any good.
Had to leave a well-paid job and was initially reluctant to claim benefits. He finds the...
This GP who came in on a Saturday morning to examine me was, I mean he'd be better in a meat market, you know, he was absolutely horrendous, he was, he had no manners, he was like a production worker, you know, like in a big giant car factory, 'Oh here's another car body, here's another car body', and that kind of thing and I tried to explain to him but he wasn't interested.
Again with my work experience and all I'm still quick on picking up signals and body languages. What I realised was, he kept looking at his watch. Then eventually it came to pass that, you know, and he said, 'Oh its not up to me', and all that, I knew I'd failed because... and he looked at his watch again and he says, you know, 'I've got 7 of these this morning to do and, you know, I only get paid so much', and I thought well, I stand no chance because this guy is wanting the 7 multiplied by the whatever payment he gets per person and off he went, and sure enough I got back the thing that I'd failed.
So I just, well I gave up, I thought well if this is how the system works, because what I say to people is don't look at me for an hour or 2 hours because you might catch me on a bad day, which would give you the wrong picture, you might catch me on a good day, which would give you the wrong picture, but there are no good days, there are bad days and worse days.
What I say to anyone is, live with me for about 6 or 8 weeks, then you find out, and not only that, I mean I applied again for the LA and this doctor who came, I mean he was the most understanding, the most appreciative, the most, you know, he took time, he had an interchange with me, and he was absolutely great.
So I got that for, I think the first time it was for 2 years, and my condition is not going to change, so after that it was sort of confirmed for life or whatever they call it, but even to this day as I said to this 19 year old girl when I was first diagnosed and went to the benefits office, I was on a mega very good salary when, I mean and I can prove that with my P60, I was on thousands and thousands of pounds, you know, mega bucks, you know, so much so money was coming out of my ears, and I went and I said to this girl who had been quite facetious and quite uncaring, she went and got her supervisor as well who was another, I think she was from an ex...
A really uncaring woman, and I said to her, 'If you two ladies can explain to me why I would want to come down from this level of financial security to', I think at that time it was '92 a week or something, 'if you could explain that to me from a mega bucks salary, thousands and thousands of pounds, I would purposely come down to '92 a week, if you could explain that to me in, you know, understandable language I will take whatever you say'.
Had a home assessment for her benefits which she found demoralizing and painful.
It was, I was put through tests, you know, can you pick up this pencil? And, you know, little tricks that they would do. Can you put on a hat you know. I just felt, I felt that they were unkind, they were, they weren't helpful. Some of the tests were painful and that was, that has it's own, it's own feelings, you know.
I just felt less than human almost. I did, I felt like a cow or something. It just felt awful because I think there are benefit cheats, you know. There are people that are on benefit that could be working and aren't, they see themselves, you know, easy bit of money or something. I don't know, I'm not them and I don't want to talk about them really, but well it just really hurt my feelings and the thing that was in my favour was that, you know, I said to them 'Look I want to work'.
I was self-employed for seven years, I did work, I did my best and they left me alone after that, they believed me. So I have been on benefit for quite some time since 1994 and that hurts. I don't want to be on benefit, I want to work, give me a job!
Had a home assessment for Disability Living Allowance which she said was quite personal but not...
So I explained to the welfare rights officer, the position and how things were and how things were in the house and how my husband had to help me with certain things and it was quite embarrassing to actually have to sit down and talk to somebody about it and then having to write it down and then having a doctor coming to the house and have a look at you, and go through all your... 'Can you bath yourself can you do this', its quite, its really quite personal questions they ask.
It's a hard thing to do, but you should resolve yourself and say 'Right if they say no that's fine', but I'm going to have a good shot at it. And it was a case of this doctor came out and he couldn't have been nicer. I was expecting this big dragon coming in the door and saying 'You're a malingerer get back to work' or whatever.
But this doctor was very, very nice and he explained every thing before he done it and he asked me to do certain things and I did do some of them but then on other ones I went 'There's no way', because if I had done what he asked me to do, they would have to get paramedics to get me back up off the floor, because there was no way I could get up myself, so it was just a case of you do what you have to do.
I mean you do what you can but you don't, you don't do things you know you can't do, because at the end of it you're not going to, your not doing anybody any good. But this gentleman was very nice and he explain..., as I say he explained everything. And lucky enough first time I tried I got the DLA which made a big difference.
So it means that I can go and get like vitamin tablets, I can go to homeopathy, I can do this and I can pay, you know it's a case of if you've got the money you can also try alternative therapies.
Some people found the focus on walking bizarre. Or pointed out that the way that the system is designed disadvantages people who aren't willing to focus on the worst aspect of their disabilities. Many disliked having to answer questions about their ability to perform personal care and hygiene tasks.
Applications are not always successful, although several eventually succeeded after an appeal. Some suspected that that, in their area, benefits were never awarded until after an appeal.
Some had avoided claiming for as long as possible, using savings and hoping that the problem would resolve. They didn't advise others to do this, as benefits often cannot be backdated. Many felt angry and bitter that they had found it so hard to find out what they were entitled to - several had only found out about benefits by chance, or through friends or family who worked in the system.
Put off claiming benefits because he believed he would get back to work but now regrets using up...
And it's barely sufficient but I shouldn't have waited that long, that length of time. I shouldn't have spent my own money' The Benefit System, Christ I've paid into it for long enough, the Benefit System is there to be used. But it was' I don't know maybe it was subconsciously I might have been thinking to myself that, if you start doing that then you're admitting that you're not going to get back to work and everything I was doing then was getting back to horses, getting back to doing what I was doing with horses.
But with hindsight I shouldn't have waited that long. I mean I even got to the point where I was selling things to pay bills and, which is absolutely stupid and I don't recommend it to anybody. Seeing as how when I did, decide that I needed benefit, the people involved at their end were very helpful, really, really helpful people. And they even told me I shouldn't have waited so long but there's not lot they can do about it, you know. I did get some of it backdated but not an awful lot. I think I was nearly... about a year before I went and got any benefits, by the time I went and did I had no money left anyway.
Several people that we talked to were working but are registered disabled and told us that they were entitled to some financial help including benefits, working tax credits and mobility allowances. One woman recommended looking up information on the Internet. Others had found out about schemes through the employment agency return to work schemes.
Apart from the loss to household income, people described many other financial consequences of their illness. Prescription costs mounted up - those who used more than 4 prescriptions in three months are advised to buy prepayment certificates.
Says that prescription charges can mount up but found out about pre-payment certificates which...
Tell me about that...
You can either get the certificates for four or twelve months. The four month I think is about '33 now and the twelve month is just under a hundred. And, basically, what it works out is, with the four month one, if you have more than five prescriptions in a four month period, it's cheaper for you to buy a certificate. So you basically buy your certificate and then you just present it when you go and get your prescriptions and you don't pay for them because you've already prepaid.
Some paid for their own medical treatment or complementary therapies, other costs included buying special furniture and mattresses, having to take taxis, having groceries delivered, and paying for other people to do jobs in the house.
One man said he regretted having to hand back all of his credit cards. A few had calculated the cost, in terms of lost income and additional expenses, as many thousands of pounds.
Loss of income also meant that people were unable to participate fully in a social life, especially with friends who had jobs and a comparatively comfortable life. Often families and friends were generous in subsidising social events, or even in helping with bills or medical expenses.
Several people stressed that mortgage lenders and utilities companies would be likely to accept repayments over a longer period, and it was better to talk to them than take out more loans and get further into debt.
Some had needed to claim settlements because of accidents or industrial injuries. One man was able to pay off his mortgage and have a couple of good holidays, but pointed out that it could not compensate for his lost income.
Received a settlement after an accident but feels nothing can replace his lost income.
Oh its, well really its turned this whole family upside down, because I mean obviously I don't work now at all and my wife's had to go out and work, she's never going to be able to make the money that I was making. She has actually went out working and we were fortunate that we got a settlement, but it doesn't last forever, and I bought my house outright, because I wasn't wanting the hassle of running out of money and not paying a mortgage.
It cost me quite a lot of money getting cars, when I passed my test, getting the right car and trying adaptations, we went for 2 or 3 holidays, I had a big family, it made life a lot easier at the particular time I got it.
Was that because of the accident?
Yes, because it wasn't my fault, but with not being able to work when you spend money you can't put it back. But now my wife works, she's actually a carer, its not the best of paid jobs, but I was fortunate in a sense that I bought my house out right and I don't have those worries, but we don't have a lot of money for incidentals now, and we will never be able to get that back and I suppose looking on that its affected us no end, there's been an awful lot of worry although it was eased for that particular time, and with actually having a big family too it made things a wee bit harder, we were never destitute.
But now we're getting a bit older and the kids are up and that sort of money is not there we can't do a lot of the things we should be doing at our sort of age. And unfortunately my wife took a massive angina attack last November, so she's had to cut back her hours in her job, because she can't do a lot of the lifting which has been another bit of a worry, you just try and get on with it now, but I mean it has changed our lives dramatically and unless you've got a big or a nest egg, I mean it has got to.
I mean I was the bread winner since I was married and coming to terms with that, my wife going out working, I could never really put up with that, although I basically had to, if I had been working and she'd wanted a part time job I would put up with that fine, but my wife's had to go out, it definitely changed our life in that respect.
And now I'm trying to do as much as I can in the house, the more I do the worse pain I'm getting, if I don't do it then she's got to come in and do it, so I mean it has been a big change a big turn over, but we are getting by we are getting there. I don't what we will be like in 10 years time when I'm older.
Another found that when he eventually won his case he had to repay all of the benefits he had received. A woman who had claimed after an accident said that it could be more trouble than it was worth. All those who had been through litigation advised getting independent advice first.
Talks about litigation process after his injury at work and explains he had to pay back his...
You think it, how did that make you feel when, did you think it was worth going through the court case?
Well I you see at times there I was that down, that I just wanted to forget all about the court case. And it was just, and it was just with people speaking to just friends said 'No look, you've suffered because of this accident you are very nearly there just go and get it over and done with'. And even that day of the court case I actually spoke to my QC and that I was ready to tell him just to scrub it but he said 'No, we've came this far we're going to see what we can get'.
But with what money I did get, just don't get me wrong it will get me through for a quite a while. But still I would rather have my health than have all the money, I would rather be still working than actually having this pay out. Actually when you pay your lawyers excess fees and you're paying the Social security there's quite a lump comes off it, that's before you even see any money, but still as I say its all over and done with but its quite scary, its quite scary to think that folk can actually can delve into your personal life and there's nothing you can do about it, they follow you everywhere, doesn't matter where you went they followed you.
I actually even tried as I said at the start of the interviews there I tried voluntary work to help other people. They tried to make out that I was earning money from that, and believe me I never, I never take a penny of anybody, anything I do for people its voluntary.
And these people are trying to make a case out of me getting money for this and it was that bad that they even came into the place where I was actually doing the voluntary work under pretences, that they're wife just wasn't well that they needed treatment and asked could they get the treatment, so they were put down on a waiting list and they gave a mobile phone number and after a wee while somebody phoned the mobile number because they hadn't turned up for that appointment and that's when we found out it was the investigators.
But its really hard, actually when, I find it hard when you're trying to help yourself and try to get better and to get off the system, you are trying to get off the sick to do something with your life and these people are trying to make out that you're a thief a ponce or whatever. They're actually trying to make out that you're earning money.
Available benefits often change. See our 'practical matters' resources for links to further information.
Last reviewed August 2018.
Last updated August 2018.