Financial impact of Long Covid on the household

This section explores how people’s ongoing Long Covid symptoms have affected their family’s financial situation.

This topic is split into the following areas:

  • Impact on work
  • Changes to family circumstances
  • Attending appointments and paying for private treatment

Long Covid has significantly impacted people’s ability to work. For parents with Long Covid, this was because of how their symptoms affected them. For parents of children with Long Covid, this was because of changes in their caring responsibilities. For some people we spoke to it was a mixture of both. Many families are in difficult financial situations due to a decline in their income. A lower family income, combined with the cost-living crisis occurring in the UK (at the time of writing October 2022), meant some families are struggling financially.

Housing and changes to work hours

Households had often lost income if a parent had stopped working, either due to their own symptoms or to care for a child with Long Covid. These changes to income often left people questioning how they will pay rent or mortgages.

Razia is no longer able to work. Her family now rely on the fifteen hours a week her husband works, which she describes as “not enough to keep a roof over our head”. Coupled with their landlord ending their tenancy unexpectedly, this has placed their family in a difficult financial and housing situation.

Razia’s family now relies on her husband’s income which is “not enough to keep a roof over our head”.

And I said to him, I said, “I’m supposed to be going back to work in September.” Then, you know, again, the anxiety is building up where how are we going to manage with that because if we don’t have the nursery places, if we don’t, we can’t have him at home day and night, you know, while I’m at work and then I’m too exhausted to do anything else or I’m in too much pain. So, he then has to do the night shift at home as well, it’s like, working fifteen hours a week, I’m going to be, that’s not enough to keep a roof over our head and we’ve already been told by our landlord that we’ve got to look elsewhere. And it was hard enough before the pandemic to find a place that would allow you to rent with children.

And that’s affordable, to be honest, because [city] is not the cheapest but he’s already said, “You guys need to look for somewhere.” And it’s, it hasn’t been easy. It hasn’t been easy to try and find somewhere and I thought, I can’t give up, because even though it’s fifteen hours a week, I can’t give that up because that’s that extra bit of income coming home but we can’t have him off work all the time because he he’ll only earn if he’s working.

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Catherine had to reduce her hours at work to help care for her son who has Long Covid. Her reduced hours and the money spent on travel and experimental treatments abroad has made her consider re-mortgaging her house to cover these expenses.

Catherine is considering re-mortgaging her house to cover her family’s expenses, which has included travelling abroad for treatment.

So we, we’re actually about to go to Germany for some treatment which is not available in the UK called apheresis so I’m hoping that he will improve with that to the point where actually I can go back to my normal work pattern and hopefully he will be able to do a bit more and even go to sixth form college, which would be really nice, but we, we don’t know what the outcome of that will be. I think we’ll just need to wait and see.

Yes, has that like privately funded as well?

Yes, so I’ll have to pay for that and it’s not cheap. So, you know, flights, accommodation and then each apheresis treatment is £1,100. I don’t know how many he’ll need. So, you know, my options are to, I’ve had to save money for him for university, so I’m using that right now. I may need to re-mortgage the house in order to pay for it. So, I’ll just see.

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Richard and Michael feel fortunate because they know that other people with Long Covid are struggling financially. Richard can no longer work as a GP because of his Long Covid symptoms but his family is able to live on his wife’s salary. Michael has had to return home from university and feels privileged that he is able to live at home and his parents are able to financially support him.

Richard feels fortunate that his family is able to live on his wife’s salary.

I mean, fortunately financially-wise, I mean, I’ve taken a huge pay cut, but my wife earns enough from the business that we’re OK, we’re still financially no problems at all, and in fact it’s taught me that I’m probably not going to go back to ever working again as a-, doing the insane hours that I used to be as a GP, so I’m definitely changing that for the future, there’s no point killing myself. So yeah, it’s been very, very, very stressful for obviously all sides.

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Changes to family circumstances

Changes to family circumstances due to Long Covid have put a strain on pre-existing family arrangements. Hazeem now works reduced hours because of Long Covid. This had a huge impact on his finances as he provides the sole income for his family. This has put them in a difficult financial situation as he is on a zero-hour contract and can’t work enough hours to support his family. Zero-hour contracts mean an employer does not have to guarantee an employee a minimum number of hours of employment. Hours of employment depend on demand.

Hazeem has had to reduce his work hours due to symptoms despite being the primary earner for his family.

Financially obviously is a bit hard, it’s not like before when you worked, fully work and earn decent money but we have a little bit of savings, we have, and we are surviving on that getting a little bit of money and rent is getting paid which is like the main thing obviously we haven’t got a house yet we want to get one and my kid is also not that big, he’s three and a half and [my wife] she’s got conditions as well, she is patient of haemophilia where she you know what haemophilia is so she is very serious like when we had our son she, throughout she was bleeding and it was really, her condition is not very good as well. She’s got eczema she’s got asthma and a few other bits, so we have to survive like this yeah.

She’s not working as well because of her condition she, she was working before she was working in [employer] she got sacked because of her health condition because her red blood cell or white blood, I think haemoglobin, her haemoglobin and iron goes low after some time, she has to have a, you know, after a month or two they inject in her body iron or haemoglobin, they give her blood. So when that happens she can’t, she get tired very quickly so she can’t go to work and she got sacked like twice [laughs] because of that, like obviously she wasn’t able to work, so since then she is not working.

Okay, so you’re basically living on the Universal Credit?

At the moment yeah. And I get a little bit of like small jobs, to do light jobs I just take it.

Yeah, yeah like for friends and family or?

Yes my, where I was working before like if there is any small shift or night work they need, I just work.

Okay. Your, did you ever have the option of getting sick pay through your work?

No they don’t pay sick pay, these days is a zero hour’s contract and that was a zero hour contract. You just get paid when you work.

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Maryam’s family is now solely reliant on her husband’s income as she and two of her children have Long Covid and she can no longer work. She describes their situation as ‘hand to mouth’. The financial situation has caused her stress and anxiety which she does not want to pass onto her children.

Maryam does not want to pass on her stress and anxiety about finances to her children.

I’m just thinking if you’re now working as much as you would like to, how’re you getting on financially?

Yeah, sometimes, because my husband, he’s working eight hours, but he’s a contract one. So, obviously we are surviving on him now.

Has that been difficult?

Very difficult.

What sorts of things, because I know food prices are going up. Petrol prices are going up.

There are food prices going up. Electric, gas, going up. Everything going up. You know, the children, they need everything. So, shopping wise, everything is up. We are struggling. Sometimes hands to mouth.

How’re feeling about that?

It’s like, you know, it’s not easy. Sometimes you get the stress, anxiety and it’s like how we going to manage everything. You don’t want to give any tension to the children.

Right. You try not to let them know that, yeah.

Yeah, yeah, yeah.

So, that’s just you and your husband trying to deal with it.

Yeah, yeah. We just working out as a, as a team.

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Changes in family circumstances, such as the death of a spouse, also had financial impacts. For Sharifa and Rebekah, the deaths of their spouses due to Covid means the management of finances falls solely on their shoulders.

Sharifa’s husband used to manage the family’s finances but following his death it is now her responsibility.

Obviously to be honest with you on… I don't know what to say, honestly, it’s hard because before, my husband used to handle all the bills, I wouldn't ask for [inaudible] I want my pocket money right [inaudible] my pocket money, but that’s the life you worry about, bills, this and that, tax, whatever, you know it… he used to do everything and then suddenly had this responsibility all the time and then honestly, I think anyone would find it hard, not just me you have to recover and do this, get on with… oh my God… and we should think about this thing, now we have to think… I can remember we used to shop from there, and now we shop from here, here yeah, now a problem, I'm going to have to save some money from here now, I'm going to have use this less now, all right, I'm turning all the lights off now, I don't want no lights on, yeah.

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Sick pay and financial assistance

Some of the people we talked to needed financial assistance. Personal Independence Payment (PIP) is a monthly payment that helps towards extra living costs due to physical or mental conditions and disabilities.

Michelle, and others, encountered hurdles applying for PIP support which she needed because she could no longer work. Michelle found that her symptoms made it difficult to remember key details required to apply for the payment.

Michelle’s Long Covid symptoms made it difficult to complete the PIP forms and interview.

I first of all thought ‘I probably need to apply for some sort of benefit to support us’, and I knew that physically I… I wasn’t in great shape, so I thought the first one… because I’d helped… supported my mum, apply for Personal Independence Payment, a PIP payment, I thought that I would apply for a PIP payment, and so I thought ‘I’ll do that one first’, because I’d had experience of it with my mum, and when I’d done it with her, I’d obviously had… I was in the right frame of mind and I was pretty well and healthy, I’d got all of the supporting evidence and documents and it had been pretty straightforward, I’d felt [laughs]. So, I thought I’d apply for it for myself, and I thought that it would be easy: oh, how wrong was I.

I tried to phone up first of all. Now, trying to do that when you have got a sick two-and-half-year-old, I think he was two and a half at the time, around, and I was on hold to try and phone up first of all to get the form was a challenge in itself, so I was put on hold and at first I thought I’d be on hold for 10 minutes, so I’d hold for 10 minutes and when, like, Vinnie would be trying to demand something from me and he would be sick, I’d be sick, I’d wait for 10 minutes and then I’d pink… think, ‘oh they’re busy, they’re not going to answer the phone’, so I’d put the phone down when they didn’t answer it after 10 minutes. So I think that went on for quite a while and it put me off to start off with, so I didn’t apply initially for a while, and then I realised that I couldn't apply online for this payment so I… so I tried to do it online, and I tried to do it at night when he’d go to sleep, but it wasn’t going to be that straightforward; I had to phone up to get this form that I had to fill out.

Back to the PIP application: on hold for an hour, eventually got through and they sent me a 44-page document, yeah. That sat in the cupboard for about, I don’t know, eight weeks, because every time I opened it, I then couldn't actually answer the questions when it had been really easy to fill out my mum’s form, I just kept looking at it and thinking ‘how the hell am I ever meant to answer that?’ So I think I had a deadline to answer it and I… as the days ticked by, I think the deadline probably was coming up and they text me, and I’d put it to one side and I just couldn't deal with it, then they kept texting and saying, “Your deadline’s approaching and you haven't filled… return this form,” so eventually I, kind of like, filled it out to the best of my ability at that point and then returned it, 44 pages. And then they wrote back and said, “We’re going to arrange an interview with somebody who will phone you.” So, they arranged an interview, and I think this is about… it… it had taken me about… the… we got back in March, I think I had the interview around about December, so it had taken me that long to deal with it.

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Xanthe also found it difficult applying for PIP. Xanthe received sick pay from work because her Long Covid symptoms meant she could not leave home. She was unsure how long she would be entitled to sick pay, so she also applied for PIP to help ease the pressure on her parents who are caring for her. However, her original PIP application was rejected. She has had to challenge the decision through a tribunal.

Xanthe applied for PIP to help fund her care when her sick pay runs out.

Yeah, and you are being paid? You've got some sick pay, don’t you?

Well yeah, I’ve only been sick… off sick for a couple of weeks, so currently I’m still being paid for one day a week and thankfully, I thank my lucky stars that the salary is good… it’s sort of… so it’s good enough that only one day a week is someone’s minimum wage, you know? So I’m so grateful for that. And so currently as it stands, yeah, after that, this month I’ll be paid, but I don’t know about next month.

Yeah, and you know the tribunal process that you're going through, is that usual for that or has it…?

Yeah, most people that I’ve spoken to with the Long Covid have had to get to that stage to get… but most people I know have then won from them. But I don’t know how much they get. I think they pay up to about £600 a month, but I don’t think I would get that much because… I mean I don’t know why I wouldn't get that much because I can’t do anything [laughs]. Maybe they want to see me in wheelchair or something, I don’t know.

Do you think living at home would… like would they sort of say, ‘oh well, your parents are supporting you,’ or…?

Maybe. But that’s not how it’s tested: it’s tested on how the disability affects your life so not necessarily your… so it’s not… it’s not means-tested or anything like that so it should… it should… it really shouldn’t be that but, I mean my parents are working full-time, six days a week, full-time jobs, and trying to look after me: they shouldn't have to do that, if it means that I have someone who comes in and makes my lunch every day and I can pay them to do that, then it takes more pressure off. You know, things like that, so…

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Others sought financial assistance from workplaces to help towards childcare costs when they are working. Sara and her husband spent a lot of money on childcare throughout the pandemic when schools were closed. Despite her Long Covid symptoms making it hard to work, the conditions of her visa say she is not allowed to reduce her work hours. Her employers said they could not offer assistance with childcare payments.

Sara paid thousands in childcare costs so that she and her husband could continue working and retain their visa.

We were, we were already planning just if she would say no, we had, we found a childminder that would just come for a few days. Actually after the first lockdown as well, when I start going back to the office we paid someone. We paid someone quite a lot of money and… We paid for like a month, or two. I don’t know. As long as there was no school, like the younger one who went back for school to school, maybe it was June, July I just don’t remember the days. But it was two days a week so the older one again, so she was 6 then. Wasn’t entitled to any school because she was year 2 and they took only year 1 and reception. So basically we had 3 days with no childcare so we basically paid from our pocket to someone to come and stay with her for a few hours so at least we could do some work. Because otherwise we would collapse. Yeah I forget about it too thank you for asking.

So yeah we paid a lot of money. A lot a lot of money. Hundreds of pound but this was the only way this could actually work. We chat with second lockdown we chat with the employer, if they could help in any way for child costs but there was. So although the managers were very sympathetic, our managers. They couldn’t get anything, any approval. Got money for home offices like, buy your desk, your screens, here’s everything. Nothing for childcare. Nothing. And I think here.

Yeah and that’s quite hard on women employees, isn’t it?

Yes. It’s one of the things that show you again, how the gap is going to grow and grow between so many female parents have lost their jobs. So many of them had to quit their jobs because someone had to stay with the kids and yes, the gap is growing.

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Attending appointments and paying for private treatment

Due to the variety of health complications caused by Long Covid many people sought medical support. Parents of children with Long Covid had to adapt their work schedules to make time to go with their children to appointments.

For parents who work freelance this meant working in evenings or missing out on job opportunities. This had a knock-on effect on their finances. Those who had been referred to Long Covid clinics often had lengthy and costly round trips, adding further drain to the family budgets.

Danie was unable to work as much as usual because she had to take her daughter to hospital appointments.

And then also, I suppose the amount of time that we spend on it, because I was having to take her to the hospital once a week. Thankfully, I work freelance, so I was able to do that but that still had a knock-on effect because I either then had to work in the evenings or I just miss out on jobs, which means it has a financial impact. So yeah, it's been adapting to it, but just kind of I think post-2020, everything's just been like, ah we don't know what's gonna happen or we’d kind of go with the flow so at least we were kind of in that frame of mind anyway. If it had happened pre-2020, I think it would have been even more of a shock to adapt to.

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In order to afford private appointments and treatments, some used savings, tried to supplement their wages, or remortgaged their homes.

Catherine, Charlotte, and Emma B all sought private treatment for Long Covid. Catherine has travelled to Germany for her son to try experimental treatment. Due to the cost of the trips and having to reduce her work hours, Catherine has considered remortgaging her home.

Emma B used money put aside for family days out and holidays to pay for private healthcare. Charlotte’s husband drew on the family holiday fund to pay for private care. He is desperate for her to recover and hopes investing in private tests, therapies and treatments will help find a way to reduce her symptoms.

Charlotte’s husband used money they would usually spend on family holidays to pay for private appointments and medication.

He’s very much got that I will get better and he’s paid for, he’s wanted to pay for everything he could possibly pay for. So, I’ve seen private doctors and private physio and a private occupational therapist to try and help me around the house and find ways and his attitude is, you can’t stay like this. You’ve got to get better. And I don’t think he accepts that this might be a long, long time.

It’s been a big stress. I’m really fortunate we’d got savings and so we’ve used a lot of savings and I only went to half pay from August. So, I was on full pay, but just the stress of the upcoming, you know, knowing I’m gonna lose my wage has been a worry. And we’ve, we’ve paid a lot out in private healthcare. We’ve paid for private physios as well which were £80 an hour and I had, I were having ‘em several times a week. I paid for some antibiotics which were £400 just an example of the cost. Tests were like two, two and half thousand pounds. We spent a fortune on tests. And financially now I’m onto statutory sick pay and half pay for my work and then after Christmas and my pay will stop. I’m applying for like the government disability like don’t know what it is, benefit.

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Although many people we spoke to had considered private appointments, treatments, and medications, few could afford to spend much money on them. As yet (October 2022) no treatment for Long Covid has been found.

School and Long Covid

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