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Organ donation

How donating a kidney affected work and finances

Most transplant centres try to arrange the assessment and tests around a donor’s work schedule to minimise disruption to their job. It is sometimes possible to arrange for some of the tests to be done locally if the donor lives a long way from the transplant centre. Several donors talked about taking time off work to have tests. A few had been retired or hadn’t been working at the time. Those who were working full-time also had to think carefully about the amount of time they would need off work to recover and whether to arrange for cover.
 
The operation and recovery period for living kidney donation varies from two to twelve weeks depending on how the kidney is removed, individual recovery and the type of work a donor will be resuming. Most of the people we talked to said that their employers were understanding and gave them time off work for the surgery and recovery, and allowed them to take it as sick leave. However Clare, a vet, said her employer was very unsupportive and stalled the process because they could not find cover.
 

Clare said her employer had always been difficult when it came to her needing time off work for...

Clare said her employer had always been difficult when it came to her needing time off work for...

Age at interview: 59
Sex: Female
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The initial consultations were quite easy. It was at a hospital which is near, twenty minute’s drive. And that went quite smoothly. Then things stalled a bit because work was a big problem. I knew I was going to have to take time off and, as far as they were concerned, it was elective surgery, so no help from them at all.

They were going to have to arrange locums. It was going to be very inconvenient, and a lot of negative feedback. They said they couldn’t stop me, but they weren’t happy. And I couldn’t do it as soon as I hoped to do it because they couldn’t arrange things, and other vets were on maternity leave and that sort of thing. So that stalled things.

But I still carried on with getting all the tests done, a lot of tests, very comprehensive, physiological and psychological. I had to take time off work. It was very difficult but I plodded on.

They [transplant team] changed the date quite near the time, which was difficult with work. Work has always been the biggest problem to be honest. Every time I had a change, they made no secret of the fact that it was very awkward, that I was putting them out.

So you didn’t really get any support from them?

No. No. None at all, sadly. And after the op, no-one contacted me. But colleagues, nurses, animal care assistants, lovely. The partners haven’t been to see me, haven’t phoned up, haven’t, nothing. I know, and we’re meant to be in a caring profession as well. Not good. But hey I’ve learnt, you know, so I owe them nothing. I’ve been with them for over thirty years. Not good. Still, as I say, I owe them nothing.
 

How much time off work donors could have depended on several factors. Paul, a GP, went back to work after two weeks, though his first week back was ‘gentler’. He had a demanding job but was also self-employed and had taken the time off as annual leave. Darren worked in a physically demanding job and said he planned to take two or three months off work so he could fully recover before doing heavy lifting again. Maggie said she went back to work too early and, because her teaching job was demanding and stressful, she ended up taking a further seven weeks off.
 

Annabel took the time off work as sick pay. She needed to have two certificates as evidence of...

Annabel took the time off work as sick pay. She needed to have two certificates as evidence of...

Age at interview: 64
Sex: Female
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I was very lucky because I had gone to the HR department, I don’t know, six months before probably to say I’m going to do this. And to see if I can have time off work, and they had said, “Yes,” very definitely, that was fine.

And I had to get, when I left hospital you have to get a sort of certificate to show that you’ve been an in-patient and so forth. I think you have to get two certificates really. I think you get one from the hospital and I get one from the GP. But I got those and produced them and there was no, I was lucky because I’m an employee and there was no question of docking me any pay. And it was just given to me as sick pay.

Well I mean it was treated as if I’d been ill, and so although it was voluntary, it was a self-inflicted illness, they take any money from my pay. And so, no, I didn’t lose any money, which was useful.

If I’d have been a freelance journalist or something, I don’t think I would have, well I don’t know whether I would have done it. But there would have been serious implications, if you’re losing six or seven weeks pay, it would have been.
 

 

Paul went back to work two weeks after surgery because it was costing him to be off work. He took...

Paul went back to work two weeks after surgery because it was costing him to be off work. He took...

Age at interview: 56
Sex: Male
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You said you took two weeks off work,

Yes.

In total.

I think that was, I’m effectively self-employed, so it was costing me, in effect, to be away. So I took it as holiday effectively, the time out. So there was pressure on me to go back, but I think that was alright. I suppose if I’d had, you know, I suppose if I was, I know it’s quite interesting in America I know where people don’t have the same kind of benefits, sickness benefits, and people are expected to go back to work much more quickly. I know that the time people take off for operations in general and specifically looking at the amount of time people took after kidney donation, is less there than it is in the UK.

I’m not saying that one way is right or wrong. I mean all I can say is that, for me, I think two weeks probably was enough. And the week I went back I did actually deliberately plan it to be a little bit gentler than, you know, so I didn’t have any other commitments that I didn’t have to have. So it did make it a little bit quieter for me.
 

 
Who covers the cost of time off work was a subject that several people talked about and some felt quite strongly about, especially those who had donated a kidney to someone outside the family. 

“There is a UK scheme that enables donors to reclaim necessary expenses such as loss of earnings and travel. However, donors should first discuss this with their employer and find out what is available under  their terms of employment around Statutory Sick Pay. Donors should talk to the Living Donor Coordinator about expenses at an early stage of the process if they might need to apply to the scheme as there is some information that they will need to read and an application form to complete. A letter from their employer and evidence of their expenses will also be necessary” NHS Blood and Transplant – Could I be a living kidney donor? June 2015)
 
Many of the people we interviewed felt strongly that living donors should be covered for loss of earnings while they are recovering from surgery. Some people said their employer had agreed to cover the time off as sick leave. One man, who donated a kidney to a friend in Holland, said his friend covered his costs and he was able to have his surgery at a quiet time at work over the summer. Other people said they’d discussed their expenses with the specialist nurse and were hoping to be reimbursed for the costs they’d incurred as a result of donating a kidney.
 

Maggie felt that her time off teaching should be covered by the National Health Service. She was...

Maggie felt that her time off teaching should be covered by the National Health Service. She was...

Age at interview: 66
Sex: Female
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Now another thing which I think is very important is who funds the time you take off work. And I said in [hospital name], “I want the recipients PCT [National Health Service] to fund this because I’m going to have to have time off teaching. I’m not going to approach [place name] education. Why should they? There’s nothing in it for them, but there is something in it for the health service because the savings in dialysis costs are huge. Everybody off dialysis is a tremendous saving. Years and years of savings, apart from the first year when the cost of surgery and post-op care I think equals the cost of a year’s dialysis. But after that, it’s gain for the health authority. 

And I said, “I’m determined not to approach [place name] education authority. I’m not going to take time off unpaid. I can’t afford to, and please will you sort this out?” And I said it quite bluntly. “No funding for my supply teacher cover, no kidney. You deal with that.”

And I think it was unusual for somebody to make that sort of demand because I think, in a family situation, there’s such an emotional pressure on families to save somebody’s life, they say, “Just take my kidney. I don’t care if I mortgage my house, you know, just save my child’s life,” or my husband, or whatever it is. But I wasn’t in that position. I was thinking about myself and other anonymous donors, who I think have a right to have their expenses paid. And actually it comes on the NHS website that expenses should be paid by the health authority. But I put it rather bluntly, “No funding for my supply teacher cover, no kidney.” And funding after evidently some negotiations was forthcoming.

From?

 From the recipient, who I think was a man in [place name]. That was let slip and I think perhaps it shouldn’t have been. That hardly matters, and I don’t know him. His PCT coughed up for my supply teacher cover.

Yes. So did you get reimbursed for your travel costs to and from?

Yes. I hadn’t been very sharp really with things like how much it cost to go by car several times or by train. I hadn’t kept my train tickets but we made a list of, I can’t remember what it came to. It didn’t come to thousands certainly, but I think it came to low hundreds of what my travelling expenses had been. And I hadn’t had to take time off school. No that’s not true. I did take one day off school, for a day’s tests that were unavoidable. But otherwise, going to [hospital name] I managed after school for an afternoon or during half term or school holidays. So I managed to work that into holiday time.

 But I’d like anybody listening to this, who’s considering being an anonymous [donor], to make sure that they do everything they can. PCT's aren’t going to exist anymore, but that the National Health pays their expenses because there’s no other body that should.
 

 

Paul looked into reimbursement. It was complicated and he did not need to use it. Money should...

Paul looked into reimbursement. It was complicated and he did not need to use it. Money should...

Age at interview: 56
Sex: Male
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There is a mechanism for reimbursing people for their, but it’s quite complicated and I think I did look into it briefly. But I didn’t use it from my own point of view. I’m fortunate in that I didn’t need to. And I think it would be perhaps a significant barrier for some people, and I certainly don’t think people should have to be punished financially for this. And that there should be a fairly straightforward mechanism for at least covering people’s costs. And I think that’s fair enough and I think it could be simplified.

But it wasn’t a particular issue for me. I think in part because I felt that, you know, that was in a sense a gift I was making. And if there was a little bit of finance attached to it in terms of my time and train tickets, again, even though I am self-employed as I mentioned earlier, the way in which I’m, for each session I took off to go up, I wasn’t having to take time off work. It wouldn’t be, if somebody who was a tradesmen for instance, you know, who was working as a plumber for instance. If they weren’t at work for that particular morning or day, then they weren’t going to get any income. So for some people I can imagine it would be much more important and indeed might be a critical factor in determining whether or not they should go ahead. And I really wouldn’t want finances to get in the way.
 

 

Di was unemployed when she had her operation. She incurred petrol costs and car parking charges....

Di was unemployed when she had her operation. She incurred petrol costs and car parking charges....

Age at interview: 58
Sex: Female
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I was unemployed, although I did have some savings to live off. Yes, you have got expenses. I had to have car park charges, which aren’t cheap, and then other charges. I was never offered for the expenses to be paid back, yet somebody I’m now supporting who’s donating at a different hospital has been told that if their work won’t pay them, if they produce payslips, submit them, they’ll be paid and they can be paid expenses. Nothing was ever mentioned to me.

Now I think it is important that people are told out of pocket expenses will be covered, which would include things like petrol, car parking charges, because it adds up over the period of time. Had I not been able to afford it, I’m not sure, I’d have had to have asked them. I don’t know quite, maybe then if you ask they say “Well, yes okay.”

So some information on that. But some support with their parking expenses and time off work if that’s the case?

Yes. I mean certainly people need time off work. I’m not quite sure how the law stands on who pays them for how much time. Because, if you have an open operation, you could be off for ten weeks or whatever. Whereas with the job I’m in, I could have gone back to work I suppose after three. I had heavy lifting to do at my job had I gone back, so I suppose four weeks I would have left it. But no, for me it wasn’t an issue. But it would have been nice to have been offered expenses.
 

 

At first, Clare was going to cover all the costs herself. After speaking to another donor, she...

At first, Clare was going to cover all the costs herself. After speaking to another donor, she...

Age at interview: 59
Sex: Female
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Well when I first decided to do it I thought, “I don’t care if I’m not paid. I can cope. That won’t matter.” Then I started to contact [name], who is a fellow altruistic donor. She wrote an article in one of the Sunday papers, which I saw. 

I contacted her via the paper and this was quite early on. And I said how I wasn’t going to get any money but that was fine. She said, “No, hang on there. There’s no reason why you shouldn’t get paid. You’re saving the NHS a lot of money by donating a kidney; go for it.” So having originally said to the practice, “Look, I’ll take as much as I can as holiday, and don’t worry about the rest.” I thought no, okay, I’ll see what I can get. So, in the end, it was decided that I would have a month’s unpaid leave and take the rest as holiday.

The NHS has since said that, as long as I produce three consecutive pay slips and save the receipts, which I haven’t done, of travel expenses incurred and parking tickets, they will do their best to refund me up to two months’ salary I think. So, in theory, I shouldn’t lose out. In practice, I’m not quite so sure as I don’t know yet.

Yeah. So in practice you’ll put this necessary paperwork together,


I have just got a letter from the practice saying that, verifying that they’re not going to pay me for a month. I’ve got an appointment next week. I’m going to see [nurse’s name], the nurse to discuss things and hopefully get it sorted. And that couldn’t be done till after the op. She said, “We can’t get it going until you’ve been through it.”
 

 

The physical and emotional aspects of donating have been much less of a concern than the...

The physical and emotional aspects of donating have been much less of a concern than the...

Age at interview: 39
Sex: Male
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Basically, there’s an organisation that’s supposed to do that, some kind of a, where’s it? Where’s it? It’s a renal donor reimbursement place, my one is for the South East Coast. And basically you have to write out the dates that you attended the hospital for whatever reason, for whatever appointment, and give them the information like evidence, from that, from the hospital and your wage slips and things like that.

So I’ve done all that. I haven’t received any confirmation or anything like that so far, which is, I had to, basically I’ve phoned my coordinator [specialist nurse] yesterday but she wasn’t there. So I’m still waiting basically, which is another thing I’m a bit really concerned about because you shouldn’t really have to worry about money at these kind of difficult periods of your life, you know what I mean? It’s bad enough that someone in your family is, especially your daughter or whatever, you know. So that’s a bit, that’s a big, so that’s my two main concerns. The big, the practical sides more, is a bit more of an issue for me personally rather than the physical or the emotional.

Yeah. That’s a really important point to make.

Exactly. So, yeah I’m a bit, going to try and sort that out as much as I can. But apparently,

So ideally that shouldn’t be something to worry about?

No, no, no. That’s why I was trying to get that out of the way and then I can concentrate on what I have to do in the hospital. But now it’s, I’m being really careful with my savings and stuff. But yeah I think I’ll have to take a loan.
 

Many of the people we spoke with felt that living donation saved the UK National Health Service (NHS) significant amounts of money and that the costs incurred during the process of donating should be covered by the NHS. Those donors on benefits such as job seeker’s allowance need to take advice by contacting their local Citizens Advice Bureau. A few people we interviewed weren’t working at the time, and one man had retired. He hadn’t considered reimbursement because he was comfortable financially but felt, like several other donors, that the NHS should reimburse the costs incurred by living donors.

Last reviewed May 2016.
Last updated May 2016.
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