Having a spinal injury is a shock and it’s hard to deal with. But not being able to walk or use my hands isn’t as bad, in my opinion, as being competent with your bowel and catheter management. Getting that sorted and being confident in that gives you your freedom to really take advantage of what you can still do.

If you’re constantly worried about either leaking and wetting yourself or having an accident with your bowels, then you’re not able to live your life day to day the way that you should and would have done normally. Because it does overtake you, and that is down to the care that is provided really. And needs to be specific from suitably trained healthcare professionals that have got the time to give you rather than from someone that wants to be in and out of your house in twenty minutes cos it’s not possible for the majority of people, that.

And people have talked about leakage and leaking, and being out somewhere andIs there any message or advice you would give in those situations?

I would say just always be practical. Always keep wipes or pads and clean things in the car or in your bag if you can. If you’re out and about, make sure you know where the toilets are. If it’s somewhere you go regularly, it shouldn’t really be a problem. And have a second change of clothes, although in my position if you’re on your own you’d find it very difficult to change anyway. But if you were with someone and you felt comfortable doing it, you could do that.

Personally, I don’t wear bottoms or trousers that are lightly coloured just in case there is like a small, slight leak. it’s not obvious. You could, if you were on your own, get yourself to your car and home without anyone really noticing. Yeah, just be as practical as you can about it. Try not to worry about it too much. And if it does, just have a plan in place for what you would do.

For me, I’ve often thought, because of the way I do it, I just clip off with a flip flow valve, I don’t have a bag attached the majority of the time because I’m quite active and transfer a lot, it means you’ve about 20 centimetres of catheter, which I just fold up and put on my lap.

But I’ve often thought that, if there was a clip or something that stopped it from moving down your legs, because potentially you could sit on it or pull on it. I’ve often thought if there was a clip that held it up towards your stomach or towards the area that it came out of your stomach, that would help. So I don’t have to consciously make sure it wasn’t falling down towards my legs. But, other than that, I can’t really see about how it could be improved. But I’d be interested if it could.

Just going back to when you were in hospital. You became aware that you’d been catheterised, was there any discussion about this?

Initially, I can vaguely remember being told and asked to see if it was okay, see if I could be catheterised. But wasn’t really aware of it, like I said. I did have quite a few bad bladder infections that had backed up to my kidneys whilst I was in hospital. And again, being spinal injured, that brings on certain other affects. And so I suffered quite badly with that, and that put me on bed rest for another week each time. So, over the six months, I was probably a month in bed on top of that because of the urine infections.

And for that reason, and because of the limited function in my hands, it was decided that medium or short to medium term, a suprapubic catheter would be more suitable. And, since then, yeah, you know it’s proven to be a lot more suitable, or a lot easier to use.

Yes. So has the mobility in your hand, has that improved over the course of time?

I don’t think the mobility has. The strength in my fingers has improved but I’m not able to move my fingers any more. I’m more confident using my fingers, so I’m able to use what I’ve got better, but I don’t think I’ve got much more function.

The bladder washes, you did those yourself did you?

I do them myself now. But initially my wife helped.

Yes. If someone wanted to know, what does it all involve?

The instructions on the bladder washout, I used to do it a particular way. And, after speaking to the urology nurse, she advised me to do it a different way. So, until told otherwise, I would follow the instructions. But it’s as simple as basically emptying the bladder washout down the catheter, the opposite way urine would come out, clipping it off and leaving it in there for a period of time. Like I said, follow the instructions until told otherwise.

And then releasing it, letting the debris that’s been dissolved come out. But I always found on the inside of the catheter you would get a covering or a layer of, I presume, debris and things that would usually come out of your urine because it’s sat still in there. And, whilst the bladder washout is in the catheter, in the bladder, I would roll the catheter in my fingers to release that into the fluid. So, as you let it out, it brought everything out. And that seems to help with the smell and the look of the catheter. It makes it clearer.

Having a spinal injury is a shock and it’s hard to deal with. But not being able to walk or use my hands isn’t as bad, in my opinion, as being competent with your bowel and catheter management. Getting that sorted and being confident in that gives you your freedom to really take advantage of what you can still do.

If you’re constantly worried about either leaking and wetting yourself or having an accident with your bowels, then you’re not able to live your life day to day the way that you should and would have done normally. Because it does overtake you, and that is down to the care that is provided really. And needs to be specific from suitably trained healthcare professionals that have got the time to give you rather than from someone that wants to be in and out of your house in twenty minutes cos it’s not possible for the majority of people, that.

People have talked about leakage and leaking, and being out somewhere. Is there any message or advice you would give in those situations?

I would say just always be practical, always keep wipes or pads and clean things in the car or in your bag if you can. If you’re out and about, make sure you know where the toilets are. If it’s somewhere you go regularly, it shouldn’t really be a problem.

And have a second change of clothes, although in my position if you’re on your own you’d find it very difficult to change anyway. But if you were with someone and you felt comfortable doing it, you could do that.

Personally, I don’t wear bottoms or trousers that are lightly coloured just in case there is like a small, slight leak. it’s not obvious. You could, if you were on your own, get yourself to your car and home without anyone really noticing.

Yeah, just be as practical as you can about it. Try not to worry about it too much. And if it does, just have a plan in place for what you would do.

When you were at home and you had that [a urethral catheter] for about a month while you were at home, how was that?

By that time I’d learnt to live with it, but it was more inconvenient. If there was no other solution, I would have lived with it, no problem. But everything from sort of cleaning it, changing it, living with it, transferring, just making sure it’s not in the way and you don’t catch it, everything was just more cumbersome and just a bit more awkward [than a suprapubic catheter].

Yes. So that has quite a big impact then on your day to day life doesn’t it?

Yeah, it did do. And also we decided to go ahead and try for a second child as well, so that obviously had complications there. So yeah it just wasn’t suitable for me really.

The first thing I did was make an appointment at the spinal injury unit with one of the consultants there that specialised in this area. And that was mainly to talk about the various options available to us. And also whether we were mentally ready as a couple, whether it was the most sensible thing to do considering what we’d just been through. And just making sure it was the right time. So that was the first conversation we had.

Once we’d had that conversation, we’d agreed what was the best way to go forward, and that was to purchase a piece of equipment called FertiCare, which is quite expensive. I think about four or five hundred pounds. And I suppose in the simplest terms it’s like a male vibrator. But we managed to get a second hand one for a fraction of the cost, I can’t remember now.

From?

It was from another spinally injured patient on one of the forum sites on the internet. He was selling it and yeah we bought that. Which doesn’t sound like the most, you know the cleanest thing to do, but it’s a medical piece of equipment that’s cleaned, and you know it is fine. And this piece of equipment, like I said, it’s like a male vibrator. And it’s just the tip of the piece of equipment that vibrates which you put on the end of your penis. And that stimulates you to ejaculate. Which you would then catch and then inseminate into your partner.

Yeah. Was it, you inseminate yourself or?

No, you do it yourself, yeah the doctor just advised us the simplest method, with a syringe. And thankfully, and luckily, it happened the first time. And again, with spinal injuries there are other side effects of autonomic dysreflexia, which you would get with any other sort of pain or sensation like an overfull bladder, bowel or a broken toe that you wasn’t aware of.

So is there anything you would recommend or advise to people who are in the situation now, being spinally injured and thinking we would like to start a family? Anything with hindsight that you would advise or any tips?

Get as much advice as you can. If you are spinal injured, go to your spinal unit. I’m sure they would have lots and lots of advice. Speak to as many people as you could on forums. they’re usually very experienced and got a lot of good advice. Particularly mothers that were spinal injured and gone through pregnancy and lived with a child, bringing them up even independently a lot of them. But a lot of the charities also run courses on parenting. They can give you a lot of advice. But really just be open-minded and don’t be put off by anything. Because it is worth it really at the end.

Most off putting thing about having my suprapubic catheter was just, one minute you’ve got a stomach there and then the next minute you’ve got a stomach with a tube coming out of it. And it’s more strange than off-putting but, within days, you don’t see it at all. So you very quickly adapt and change to suit really. And that goes with every other problem really. You quite quickly find a way round things or a different way of doing something, or not doing it at all, and doing something completely different.

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.

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.

Have you had any district nurses come into the house to change it [the catheter]?

Not to change it, no, but I had care provided by the district nurse up until recently. I’ve just been granted Continuing Care so I have a care agency providing it now, which is a lot more reliable and more suitable really.

What kind of care was the district nurse providing?

The district nurses provided bowel care on a daily basis, and it would have been a catheter change if we’d have got around to that. But that’s all it was.

Were you happy with the care that you had with the district nurse? Or what could have been improved? So if they were training and thinking how can we improve what we do?

Some nurses were very good, others not so good. And I put that down to training, experience and confidence. But also not having the time in the morning to spend with you. They always had a number of patients to get to in a certain time. Whereas the care that I get now, they are given more than enough time so if it’s, you know they’re able to do it quickly one day then that’s fine. If it takes a bit longer the second, again that’s fine. it’s just to suit me really rather than to suit the district nurse and the patients they have to meet.

Yes. So what would you say makes a good district nurse compared to one who’s not so good?

I would say, I think a lot of the time it’s not particularly the person, it’s more the times constraints they have to work within. But yeah I think definitely training, and understanding, understanding what they’re actually doing because although they do similar things to other patients, being spinal, having a spinal injury makes it slightly different. And has other sort of problems that are linked in with it.

Yes. And the carer who, the carers who come in now, is it different carers every day? Or for a certain length of time?

We have a carer every morning for two hours and I have two carers that are sort of assigned to me. So again that’s a lot better because, with a district nurse, it could be one of six, seven, eight, or someone completely different from another team if staffing was low or sickness, and so yeah.it’s a lot more personal.

Yes. You have two carers assigned to you. Do they come at specific times, so you know when one of them is coming or when the other is coming?

Yeah. I mean it’s a bit more relaxed than that, they will just phone me up, text me, or I’ll text them if I do need a slightly later or earlier time. But yeah the majority of the time it’s a fixed time every day, and I’m usually aware of the person that’s coming that day.

Is this the NHS care or is it through the council?

it’s provided from a PCT [Primary Care Trust]. Funded through a PCT.