Living with a urinary catheter

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.

 

 

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.

 

 

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.

 

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.

 

 

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

 

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.

 

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.

 

No.

 

I drive to and from work.

 

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’.

 

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.

 

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.

 

 

No.

 

 

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.

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.

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.

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. 

 

 

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.

 

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.

 

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 

 

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.

 

 

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.