Work and finances when living with a urinary catheter

Serious illness or disability may make work difficult or even impossible. Disabled people may also face discrimination at work. Some people had had to give up work. They did not say that having a catheter was the main reason for giving up work. It was lack of co-ordination, pain, bladder problems, repeated infections, numerous operations, weakness or partial paralysis that had led to retirement. But some of the infections that people mentioned had resulted from living with a catheter. Carol gave up work at 39 because of endometriosis.

Carol had many operations and infections and was often in pain. She was no longer thought fit for…

Age at interview 39

Gender Female

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I couldn’t work throughout that time. Ultimately I lost my career because of my bladder problems, and that has been very hard to deal with. So, you know, these are very serious effects on people’s lives.

Absolutely.

So I couldn’t work because of the risk of infection, and I’ve had challenging experiences as well. I had one doctor tell me, when I was taken in as an emergency, that I couldn’t go home with a catheter because I might get an infection and I might die. Which I thought was unbelievable, and frankly, I’ve been home with a catheter before so I knew that that was just not good.

The NHS pays for the catheters. Have you had other expenses because of all this? It must have been very hard for you. I mean you’ve had to give up your job for a start.

I’ve had to give up my job. I consider myself extremely lucky that I had worked for my company for a long time and they dealt with it very well. And I managed to get an ill-health pension which not all companies have that provision. And I know for a fact how difficult it is for women with endometriosis to claim disability allowances and ESA [Employment and Support Allowance].

So I do think I’m very lucky because the government’s changed the rules. it’s very much about a tick box exercise on assessments these days. And if you have an invisible condition and you can walk, you can write, it’s difficult for people to say, No, you’re not fit for work But my company felt that I was no longer fit to do my role.

So does your company help you? You haven’t got to go down the government side to get all the benefits and things?

I don’t. Even though, even after all I’ve been through. I’ve been through thirteen operations; I’ve had most of my rectum removed. I’ve had numerous bladder surgeries, and I live with chronic pelvic pain. You know, for example, I didn’t get much sleep last night because I was up in pain, and taking painkillers. And that’s normal, normal for me. But I still look okay, and so anyone assessing me would say well, You know, you can work But actually the practicalities of that are very hard.

My employer deemed that I was unemployable, and from my sickness record alone. You know it’s sad at 39 that someone says that, but I’m determined to make a difference for women with endometriosis. And I’ll continue to fight and try and do work with the government so they do understand what women go through.

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Rob had to stop work because his leg weakness from cauda equina syndrome made travelling…

Age at interview 70

Gender Male

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I suppose the impact of the whole illness has affected you financially because you might have gone on working might you?

Yes, I had no plans to retire. I was 66. I was retired twice by the civil service and things like that but I was working. I do consultancy work but unfortunately the consultancy work I used to do for the Ministry of Defence all involved travel and independent travel and staying away overnight, things like that. I mean the ability to get on a train, to get in a car and get in an aircraft and go somewhere, attend a meeting or even Chair a meeting, these are the things I used to do on a consultancy contract with the Ministry. None of that’s possible.

Is that because of the condition more than the catheter?

My legs.

Yes, yes.

I could have coped with the catheter but I can’t drive. I can’t walk long distances I need someone, a wheelchair. So all these things made that sort of thing; well it was getting more difficult.

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Stewart (with prostate problems) had already retired from work, but thought that it would be difficult to teach with a catheter; the staff toilets were far from his workshop and rooms.

Others had either continued working, had returned to work after a spell in hospital, or had taken up voluntary work. Iain, with multiple sclerosis (MS), is an IT officer. He continued full time work; his MS had made him more determined not to miss work. Gavin, who had broken his neck and was partially paralysed, said that his bowel and catheter routines made a return to work daunting. He also worried that he might have an ‘accident’ and not be able to find someone to help him clean up. He got the equipment he needed after getting advice from ‘Access to Work’ (see below). After his injury, Gavin did lighter work because he could no longer be a fire fighter. Later, when jobs were cut he was made redundant.

Iain practised intermittent self-catherisation for about five years. After that he had a urethral…

Age at interview 35

Gender Male

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What did the relapses involve?

Mainly extreme loss of muscle strength and co-ordination and fatigue, just things like that.

Yes. So for an 18 year old, how did this impact on your day to day life?

I never missed a day off work from it as much as possible. I was just determined to be at work, probably more so and being a bit bloody minded in many ways cos I will get there, I will do that. And don’t you dare say I can’t do it cos I will do it regardless

Then from probably 28 to say 30 or thereabouts, I was getting more and more problems walking about. So I was using a walking stick, then progressed onto crutches. And then from about early thirties I’ve been using a wheelchair more or less since that date to now, because my walking is, I’m good at falling down. Walking is something I can’t really do. I’m fortunate enough to still be able to weight bear, but beyond that I can’t do anything else in that respect. But I still do everything I could and have done it in the past. Yes.

And you’ve carried on working throughout?

Yes. I still work full time; it would drive me mad if I didn’t. Generally I have to occupy my mind; you know I have to do something to keep my mind busy, cos I get bored quite easily.

Yeah. And you mentioned that you don’t work very far so it’s,

No.

How do you get to work?

I drive to and from work.

Right so you get, you drive your car?

Yes.

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When Gavin returned to work, his colleagues helped and the Occupational Health Department…

Age at interview 28

Gender Male

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Returning to work was daunting at first. But that wasn’t because of the work I was going to face. It was more because of bowel and catheter routines and potentially having an accident and not being in an environment with any help to assist me clean and everything.

But returning to work was made very easy by my work colleagues. The Occupational Health department was very helpful in reassuring me that, if I did have any problems, that they would help and sort it out.

And it was very flexible at first, so I could come and go as I pleased. There was as many or as little hours as I wanted. And the equipment that I needed was provided after getting advice through Access to Work.

So it was all very good.

Yes, it was good and it was quite quick as well after leaving hospital. I left hospital in December 2010 and returned to work in, I think the start of April. And that was more a personal thing really that I wanted to get back to a normal life, in normal environments. Cos I think having that time off would have made it even harder to return to work.

Once you started back at work, how did you feel right up until now when you’ve retired?

I’ve just recently been retired. And that’s very complicated but basically I can’t fulfil the role of a fire fighter anymore. And, because of the current climate, they’re making redundancies in the civilian side of the work anyway. So hopefully there may be a job for me to move into, but currently not. I forgot the question now.

How was it when you first got back, right up until now?

Yeah, towards the end it was, I’d built up to working three full days and, with the addition of the new care company providing my care, I was able to get to work at half past eight, nine- o’clock, and do a full day’s work. Yes, I felt very confident in what I was doing and it didn’t seem to slow my work down. I could still do what I did before at a similar speed although it, you know, it was in a different way.

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Badg went back to work a few months after leaving hospital. ‘Access to Work’ paid to adapt the toilet at work for him. ‘Access to Work’ helps people if their health or disability affects the way they do their job. It advises an employer and helps with costs arising from people’s needs. ‘Access to Work’ might pay towards a support worker or the equipment people need at work. It can also contribute to the cost of getting to work if someone cannot use public transport. For details see: GOV.UK.

Michelle has been partially paralysed since the age of 16. Using a catheter enabled her to go to university and then qualify as a solicitor. The catheter allows her to work.

Michelle’s disability made it more difficult for her to work than if she had been able bodied,…

Age at interview 45

Gender Female

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You were quite young when this happened so it didn’t suddenly affect your employment.

No.

Have you found being in a wheelchair, having a catheter, has it affected your working life tremendously?

Not necessarily having the catheter because in a way the catheter is sort of the positive side because it allows me to be able to work without having to disrupt the way in which I work. Certainly being disabled has made it more difficult for me to work, particularly because I did a law degree at university and then had a year at college of law and then I needed to find a firm of solicitors just to take me on to do my last two years of my legal qualification.

And this was back in the late eighties when most of my colleagues who were at university with me were getting sort of five, six, seven job offers because in the late eighties the economy was booming. Lawyers firms were taking on lots of trainees and it was a bumper time to be pursuing a legal career.

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Some people developed new interests or projects linked to their condition or disability. Peter, for example, who once ran his own business, now manages a website called 21st Century Catheter Project, which aims to improve the design of the Foley catheter and to help current users. He receives a small monthly income for managing the website.

Peter Y describes the 21st Century Catheter Project, which started in 2009.

Age at interview 65

Gender Male

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The 21st Century Catheter Project started a year ago now, which is the middle of 2010, it was probably the middle of 2009. But we got up and running and got a full website up at the beginning of this year [2011].

The focus is to improve the design of the catheter, of the Foley catheter, to improve that design. But we knew if we put the website up, we would get a lot of people saying, Help me with what I’ve got and so there’s a forum there. There’s all the science of problems with catheters, in terms of Proteus mirabilis infection, how it occurs. There’s some graphic pictures which, unless you’re a [catheter user], if you’re a member of the general public we should probably put an x-rating on it.

But, apart from that, it’s a website to help current users. And it’s also a website trying to promote a new design and actually to get people to accept that professionals in the industry and in the medical profession, to accept how limited the existing catheter is. it’s one of those things which, if brought forward now as a new invention, would simply not be approved in its current state. And the only reason it’s being used it seems to be, is because no one can be bothered to get anything better. And I think part of the problem, the other thing we wanted to raise was, or to demonstrate was that existing users are not happy with what they’ve got, but there’s no alternative.

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Annie does voluntary work. She had a horse riding accident in 2002 when she was 54. She was partly paralysed. She first used a urethral catheter, now a suprapubic one. She said that in many ways she has become busier since the accident. She became High Sheriff for a year and is now a trustee of the Southern Spinal Injury Trust. Several other people also talked about the voluntary work they’d become involved in connected with their specific condition, e.g. endometriosis, multiple sclerosis. Alok worked with computers before his spinal injury.

Alok now uses his knowledge and skills as a volunteer to help others with their computer problems.

Age at interview 37

Gender Male

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I have got a website of my own. The main theme of my website is that, most of the time, able bodied people look at disabled people and think that we are not doing anything, we are not going to get anything out of them, that they will always be dependent on us. Whereas the theme of my website, what we are doing is we are helping able bodied people. So that’s why I have named it Disabled Helpers. It means we are disabled but we too can help society. We too can do things which can change societies in the same way as able bodied people.

So currently what I’m doing is, because I was in software training before I had my accident, I’ve got the knowledge of computers and things. So, through my website, I’m just helping people and resolving their computer related problems.

After coming here, into residential care, I saw that even for very small things, people are going to the big shops to get a check-up or get it resolved, and they are paying a hefty amount for that. I got this idea by, one day a carer had a computer problem and said, Oh thank God my computer is working now. And I said, What happened to it She said, Oh it just stopped like that, etc When she described the problem, I was already aware of the answer, the solution for that. And I just asked her how much they charged for this. She said £120 for that.

I was just shocked because it’s just a ten minute task to resolve it using one programme. They had taken £120 out of her carer’s pocket, whose earning is not that much. £120 means almost two days salary for her.

That’s where l started helping them so, wherever I have been, I just try to help them as and when because my health doesn’t allow me to help them continuously. But, as and when I get time, I just try to help people too in solving their problems. So they can call me; if I am available, I will listen and advise them or guide them. And, depending on that, if they just benefited I am happy with that.
So, similar to me, other disabled people also can help. The idea of my website was to bring a lot of disabled people together who are like me, who have the knowledge but they can’t do much because of their disability. And they can’t do it continuously like you know, if you, I have the knowledge but I can’t work. I can’t even sit for two or three hours nowadays. Even in the bed, you can see my neck is so painful that I’m not able to keep it in one place together. But I can see that maybe one hour, two hours, whatever time it is, if they can start contributing to society then that’s going to make a big change in society. That way, whatever they have learned and earned before their accident, and even after their accident, they can share it. And knowledge is always helpful to other people.

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As discussed above, people who are ill or disabled may have to give up work. Without an income they may have serious financial difficulties. For the latest on Government benefits and grants see GOV.UK.

Finding information about the benefits that might be available in each situation can sometimes be difficult. Gavin, who was paralysed from his chest down in 2010 after he slipped on wet decking, said that it was a ‘nightmare’.

Information about benefits can be hard to find. Gavin found advice from charities useful. He…

Age at interview 28

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Funding is our biggest issue really. There seems to be a lot of help out there, or people that say they’ve got advice to offer. But it doesn’t usually give you the full picture. You have to go to many other places to get the information. Charities are usually the better people to ring. Speaking to other people is good, but they very rarely are they in the exact same situation as you with regards to receiving benefits. So the Charities can usually give you more specific advice. But again it is just advice and I’ve found you then have to go to each individual benefit office for more specific advice. And even then it’s usually quite difficult. It takes a lot of time and a lot of paperwork and yeah, you seem to be forever filling out forms and sending them back off and going for medical assessments to prove that I still can’t walk.

Do they come here or you have to go to them?

Both really. I have been asked to attend various appointments and when I’ve got there and they’ve seen what situation I’m in, they have sort of said, Oh no, you shouldn’t have come down. You should have just phoned us up But previously they’ve had all my information anyway, so they obviously aren’t looking deeply into the situation. they’re just seeing it on face value and asking you to come in, which is a bit disappointing really.

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Sara, with multiple sclerosis, received Disability Living Allowance. This had two parts – the care component and the mobility component. Sara received both because she is wheelchair bound. This benefit has now been replaced by Personal Independence Payments (PIP) which also has two partsShe also gets Incapacity Benefit (now replaced with Employment and Support Allowance ESA). Rob, with weak legs through cauda equina syndrome, receives Attendance Allowance at the lower rate.

Frances, with multiple sclerosis, pointed out that when people are applying for benefits they should fill in the forms as though they were having a bad day, not a good day; many people find it hard to admit to needing help with some aspects of social care, such as incontinence. To start with Frances had difficulty getting benefits because she was self-employed.

Frances recalled what happened when a doctor visited her to assess her disabilities, and explains…

Age at interview 64

Gender Female

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This going to impact on my work? You’ve also had to look at that again and you know How are we going to cope financially? What benefits are we entitled to?

I know that’s something that’s always, that’s a terrible worry for people. I was lucky that my husband was working and had got a reasonably good job. How I would have coped if I’d have been on my own I hate to think because I’m still not sure whether, I mean I get a mobility benefit. I did have a job to get any benefits to begin with because I’m self- employed. If I’d been working for somebody, if I’d been employed, I would have got quite a lot more I think, at the time.

But it’s something that, even now, I think I ought to look into because I’m probably, I’m sure that there’s probably something I’m entitled to that I’ve never, never gone after.

Is there any advice you would give to someone who’s been newly diagnosed and is thinking, Okay, I might not be able to carry on working as I was doing, how do I find out about the benefits?

There are online people that you can contact. There’s a Benefits and Work’ website which, I’ve personally not tried it, but I’ve had lots of people say how good it is. And they sort out all the benefits for you and tell you exactly what you’re entitled to, and how to claim. That’s another thing is how to claim. I think they’ve changed some of the benefits because I did have one which was severe disablement.

They did send a doctor to check me because they check on benefits to make sure. And he came and he sort of measured to see what disability I’d got. I was surprised that a couple of weeks later I got a letter to say that I was awarded a higher amount. There was I thinking, Oh he’s going to say if she doesn’t need anything, and he actually decided that I should be on a higher amount. But I’ve never done anything about it since and I am far worse now than I was then. So I probably could get more. There’s another advisory website which is called, Turn2us, which they sort it out for you as well.

That’s good to know.

Yeah.

That’s something that we could maybe list on our website

Yeah.and I know that when people fill in forms, I mean you don’t always like to admit that you’ve, you know you have difficulty in getting yourself cleaned up when you’ve had accidents. And you’ve got to, you know, it’s pretty horrific. Pretty horrific side of it and you don’t like to say that you need help and care. And you like to think of things on a good day. But when you’re filling in for benefits you’ve really got to fill it in as if it was one of your bad days. You’ve got to look at it like that. That’s the sort of advice that I was given.

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People with a complex medical condition, substantial and on-going care needs, and who are not in hospital, may be eligible for free NHS Continuing Healthcare. If someone in a care home gets NHS Continuing Healthcare, it will cover their care home fees, including the cost of accommodation, personal care and healthcare costs. If NHS Continuing Healthcare is provided in the home, it covers personal care and healthcare costs. It may also include support for the carer. Clinical Commissioning Groups CCGs (who manage local health services) carry out an assessment for NHS Continuing Healthcare if it seems that someone may need it. Not everyone with a disability or long-term condition is eligible.

Rachel and her husband talk about the Continuing Healthcare that he receives. At first they found…

Age at interview 49

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So does the government pay continuing care?

Rachel’ They do now. They wouldn’t have.

It was difficult was it?

Rachel’ Oh yes, very difficult and it cost an awful lot of money, thousands of pounds in legal fees. But what can you do?

Does that mean that the government pays the entire cost of a nursing home?

Rachel’ Yes, it does, yes. And the other thing is a Continuing Care package follows you wherever you want to go.

Oh that’s good. So you could go home and then that would pay for carers to come in?

Rachel’ Oh yes, everything.

Husband’ But you have to have a special home, with special wet space, special extra space.

Yes, of course.

Husband’ And at least one nurse and one full time carer.

For them to pay continuing care?

Husband’ Which they say they would do.

Rachel’ Two

Husband’ They have to legally anyway.

Rachel’ Two nurses in the day, in each day, one nurse and one carer and then at night one nurse and one carer.

So if you need one nurse and one carer both day and night, then they’ll pay continuing care?

Rachel’ They will.

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If a person doesn’t qualify for NHS Continuing Healthcare, their local authority is responsible for assessing their care needs and providing services if they are eligible. If the outcome of the assessment is that services will be provided, people can ask for Direct Payments instead of having the service arranged by social services. Direct Payments aim to give people more flexibility in how services are provided. By giving people the money instead of social care services, they have greater choice and control over their lives and can decide themselves how care is delivered. Several people with a spinal cord injury said that Direct Payments enabled them to employ their own professional carer, (see ‘Having a professional carer’).

Dave describes the various benefits he gets and talks about the Direct Payments scheme. He also…

Age at interview 31

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Can you get any financial help like Disability Living Allowance?

Yes, I receive Disability Living Allowance and part of that is the higher rate Mobility component which I believe there are certain criteria you have to meet in order to receive that. Yes, so I do receive DLA. And I think at some point I also received some Income Support as well I believe. And I also now use a scheme called Direct Payments for getting carer help. I then employ my own.

So that you get that money to pay for your care?

Yes, exactly. Which is good actually, Direct Payments. I think it’s a good way of doing it. It gives me choice over who I employ, when I employ them and how long I employ them. And it certainly works

Does the NHS pay for most of the care that you’ve had?

Most. Although the provision that the NHS gives for wheelchairs is awful. If you just took what you were given by the NHS in terms of wheelchair allowance, you wouldn’t be able to manage. Certainly for me, being tall and, you know, everybody’s different, you want a wheelchair that’s going to fit you properly. And if you go through what the NHS provides, well, I dread to think what situation you’d be in.

Really?

Yes. So you’re offered a wheelchair voucher. They contribute a certain amount. And, you know, for you to get, in my opinion, what is needed for you to have a wheelchair that’s completely right for you will far exceed what the NHS is prepared to pay.

So that’s a real problem if you can’t afford it?

Yes. Which is why I approached Aspire, the charity which helped with some of the purchase of a wheelchair.

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People with certain medical conditions, those with a permanent fistula or stoma that may need continuous surgical dressing, or anyone requiring an appliance such as a catheter, can get free NHS prescriptions. They need to get a valid Medical Exemption Certificate (see ‘Getting catheter equipment’). A fistula is an abnormal connection between an organ, vessel or intestine and another structure. Fistulas are usually the result of injury or surgery. A stoma is an opening, either natural or surgically created, which connects a portion of the body cavity to the outside environment (e.g. a colostomy).

Sharon found that she could get free prescriptions because she had a stoma and a suprapubic…

Age at interview 52

Gender Female

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The only thing I would say to people which I didn’t know for a couple of years is you can get free prescriptions. I used to spend a lot of money, obviously antibiotics, the catheter, I mean there’s so much you need that goes with the catheter, you know, the water. And that’s what I found on that site, Bladder and Bowel Foundation, that I used to go on. I found out that, when you’ve got a stoma, a permanent one, you can get free prescriptions.

Oh, so all your drugs now are free?

Everything. Yes.

That’s really important.

Even my GP didn’t know. Because I had to get a form. I can’t remember what the form’s called, from the doctors. And obviously you’ve got to write down what’s wrong with you and then the GP signs it.

Oh good, that’s really important.

Yes, yes, because like I say it used to cost me a lot of money for prescriptions.

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Sex and intimate relationships

Disability can affect a relationship both in positive and negative ways, but having a catheter can sometimes be more difficult for people who want a...