Do you find on the whole there are enough disabled toilets around now? Has it got better?

In some ways it’s probably worse for disabled toilets. Particularly if you think about shopping centres and that, and a lot of the public toilets that councils operated are being shut down. But I mean thankfully most department stores, most restaurants, most pubs and places that are open to the public now have disabled facilities. And at least for me it is only the case of, because I’ve got the catheter, emptying the leg bag into a jug and then down the toilet, so it’s not as if I, as I say I physically have to transfer across to a toilet anymore. Cos to be quite honest the amount of disabled toilets that you’d be actually physically able to do that are very few and far between.

Not enough bars and grab rails?

No, absolutely not, no. Or even the size of disabled toilets, I mean some disabled toilets are horrendously small.

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.

Do you find that GP’s know much about catheters?

Absolutely nothing. No, no. So you end up just, I mean my GP, I’ve known her twenty years now and she knows that if I need something I’ll shout. And she will very often by guided by me, which is good. And obviously the district nurses and the local continence service are a lot more clued up around catheters than the GP I think.

Have you had any advice from the local continence service? Have you had any contact with them?

No, I don’t really. Because I’ll invariably go back to my spinal unit and I find that because, if I’ve got any problems, it’s usually to do with the spinal cord injury side of having a catheter, I find it best to go back to my spinal unit to get any advice that I need.

I suppose because I’ve been fortunate with the spinal unit, most of the information I’ve had has come from there. But I’m also a member of the Spinal Injuries Association, which is a charity for people with spinal cord injury. And on the information side, they’re sort of second to none for being able to provide information on all aspects of daily living and certainly things around developments with catheter care, and also leg bags, night bags, all of the things that go with having a catheter. I find it very easy to get information from the charity itself.

Is that on the internet or do they send you leaflets?

Well if you’re a member you get a magazine every six weeks, and there’s hardly an issue goes by without somebody writing in about something to do with catheter care. Or there are articles in the magazine or there’s advertising from the big companies around developments in catheters and catheter care.
But also yes, the website is really good for information as well and there’s a telephone advice line that you can phone up as well. So I mean if I’m honest, it would either be my spinal unit or it would be back to the charity if I needed information on catheters or catheter care. I wouldn’t ask locally.

For me, it’s about not being afraid of a catheter. If you’re fully aware of how you need to properly take care of it, and make sure that if you have carers or you need carers that they know how to best care for it, then it shouldn’t be something that you’re afraid of. You know, as I’ve said to you, I’ve found the reversal of that really. I’ve found that a catheter has been the sort of the most liberating thing to allow me to live the life that I want to. Whether it’s a urethral one or a suprapubic.

So, you know, that would be my main message to people. You know, if somebody mentions that you ought to think about having a catheter, then don’t be afraid about it just because it’s something alien being introduced into your system.

Catheters, I still get provided for locally. they’re on my repeat prescription. I have the, I can order 2 catheters every month and I also order my leg bags and my night bags on my repeat prescription every month.

So there I phone up my pharmacy. I tell them what I need on a monthly basis. They organise it all with my GP practice and, two days later, it’s all, get the doorbell ring and it’s all delivered.

Oh that’s good.

Which I have to say is a huge advantage these days. Whereas years ago it used to be, put your prescription into the doctors, go back and collect it two or three days later, take that to the pharmacy. The pharmacy would get everything in. You’d go back two or three days after that and have a huge box of things that had to be manhandled out to the car, and carers would have to organise, so nowadays from that perspective that’s a lot easier.

My continence pads come through the continence service here and that’s just changed to a nationally provided service. So I know that every ten weeks I’ll get a delivery of continence pads, which usually I’ll have sort of ten or twelve packs arrive at a time which means trying to find storage for those.

So they might come from a long way away?

Yeah, they just get delivered by a delivery firm now.

Have you ever had any thoughts about how they [catheters] could be even better designed?

Catheters themselves? Probably not, cos I find, I find with them, it works, you know, if it’s not broke, don’t fix it. Well I suppose the one thing, I would love to be able to empty my leg bag myself. Because again that would just
More independence.

Yeah, more independence. But I haven’t yet found anything that would that would allow me easily to be able to do that.

What about getting someone to help you care for not only your catheter but every aspect of your life. Can you pay someone to do that and choose somebody? How is everything now?

For the last 12 or 15 years I’ve used a specialist spinal injury care provider because they train the carers to be able to look after all the aspects that are associated with having a spinal cord injury.

Oh that’s good.

So I have a live-in 24 hour carer, who works three weeks on and one week off. And then I have a relief carer for the week that she’s off. And they take care of everything to do with not only my bowel and bladder care but all aspects of daily living as well.

Skin care I suppose?

Skin care, absolutely important, yes. That’s checking to make sure there’s no pressure sores starting or monitoring sites where I have got difficulties and everything else that goes with it.

And do you get any benefits, government benefits, to help you with paying for this?

Yes, I’m funded from what’s called the Independent Living Fund, which is a Government Agency that pays towards the cost of my live in care. And I also get some Care in the Community money from both my NHS provider and the Adult Social Care. So my funding comes from a mixture of the three.

Do you find it quite tricky trying to teach somebody what to do?

I suppose because I’ve lived independently with carers now for nearly 20, well just over 20 years, you do get used to it. But usually, when it’s a new carer, it can take a good four or five days, even though they’re specifically trained to work with somebody with a spinal cord injury, to get the carer into the routine that you have, because we’re all still different at the end of the day.

Can you remember what you felt, or what you thought when you first realised you had the catheter as well?

No, because I think they probably told me I’d got a catheter but I don’t think I even understood what a catheter was there to do, or where it was inserted or how it was inserted because obviously I had no feeling at all. So I think it would have been a few days.

Thankfully there was a very helpful sister on the ward that they then moved me to, who sat down and explained some of the niceties about having a catheter for, obviously for urine drainage, as well as having to explain how things, around how I was having to have manual bowel evacuations done as well. So it was a sort of double whammy of having to understand you know, because I couldn’t feel. I obviously wasn’t able to control my bladder or my bowels, and therefore having to have somebody to intervene and help that process happen.

That must have been very, very difficult.

Yes. But rather that be there to help than have the other whole side of things if it didn’t.

The one thing I did find that I did have difficulty with having the urethral catheter was because, although my bladder and my bowels decided to stop work on the day that I had my injury, the one thing that I never got any problems with was my monthly menstruation. So I would always have my menstrual cycle and, even when all this happened, I never missed one period.

So, because of having the urethral catheter, my mother to start with and then my carers obviously had to be very careful about when I had my periods on, to make sure that the catheter and the site and everything there, down in that area, was cleaned carefully to avoid any possible infection being introduced that way.

Yes, that must have been quite difficult.

Yes, and although I discussed with my GP about going onto the pill or something like that to try and stop some of the periods, some of the bleeding happening because of some of the side effects of the medication that I could have had at the time, I really didn’t want to sort of introduce anything else into my system. So in a way it was, I decided that it was best just to let nature take its course.

But, as I say, obviously it did sort of introduce into the whole care regime a bit more careful consideration around making sure that everything was kept as hygienic as possible.

Summing up now, thinking in your mind, are you glad that you changed to the suprapubic catheter?

Yes, I think yes, so as I say, from my carers’ perspective it’s a lot easier to cope with. Even from just things, particularly around sort of my period now. You know, whilst I can be in quite a bloody mess, even sort of using tampons because I can’t, because it’s, I don’t get on and off the bed two or three times a day to change the tampons when I’ve got a heavy period, you know I still leak blood onto my continence pads. So whilst my carers still have to clean and make sure hygiene wise that that’s all alright, certainly we don’t have any worries that the catheter itself is getting infected from that. So from that perspective, that helps.

I’ve been paralysed since the age of 16, back in 1982. I went into hospital for a routine jaw operation and, unfortunately, when I woke from the anaesthetic I was paralysed from the C6 level down.

Since that day my injury level hasn’t changed at all. It’s been quite stable and what that means is that I’ve got no feeling from just the top of my chest. I have partial feeling down my arms. I can just feel the thumb and first finger side of my arms but no other feeling whatsoever. So I’m doubly incontinent and I have no finger or hand movement to speak of.

Did you wake up with a catheter?

No, I didn’t. No, because they didn’t realise in the hospital quite what had happened to me until I woke up and was able to summon somebody to my side because I woke up feeling strange, because obviously I couldn’t feel anything. When I went to move my arms, my arms just fell off the side of the bed and I couldn’t do anything.

My jaw was wired up at the time because of the operation I’d had done. So it was quite difficult for about 20 minutes to actually summon somebody to my aid. As soon as I did and they realised that I couldn’t move and I’d got no feeling, it was a bit like, it was a bit like a panic. Doctors and nurses appeared from everywhere, and they were trying to find out what had happened to me. They were trying to find out from me where I could feel, what I couldn’t move, what I could move.

For the next few hours it was just sort of being seen by umpteen doctors with them all trying to work out what was happening. So I didn’t actually have a catheter inserted till the following day when they realised, when they came to sort of move me about in the bed that I was wet from, where obviously my bladder had emptied itself by itself.

How were you feeling through all this time?

It was a shock to the system I suppose would be a polite way of putting it. But I mean it was just, because it was just all so unknown, I just hadn’t got any clue what was going on. So it was real sort of panic and not understanding what was happening.

Can you explain why you made that decision to change?

Well I think roughly every two years, you go on, I go back to my spinal unit and have, well we term it an MOT. it’s basically a once over everything. Gives you a chance to catch up with your consultant, find out whether there’s been any advances in the treatments, particularly for bowel and bladder care. It allows them to do the ultrasound and the x-rays to find out how the bladder and the bowels are operating. Whether there’s any build up of kidney stones, bladder stones, all of that sort of thing.

And I suppose it was about, oh it must have been about 15, 16 years ago, and at that time we were talking about the fact that I’d had the urethral catheter for a long time. And that the spinal unit was finding that, I think the research and the outcomes from having suprapubic catheters was quite good at that point. And was felt to be one, you know, one further way of cutting down the chances of getting bad bladder infections, and the, probably the ease of maintenance around the suprapubic versus the urethral.

And through chatting around all of that with my consultant, I decided that it was probably about the right time to change. And so I went into my spinal unit and they took me down to theatre and made the insertion into my bladder through the stomach wall. And I’ve had a suprapubic ever since.

Was that done with a local anaesthetic?

No, it would have been a local anaesthetic, again it was probably an epidural again they did that under.

And can you say a bit more about what it’s like to have a suprapubic catheter?

Yeah, I mean the one downside I suppose is, because of the insertions through the stomach, I’ve lost some of the muscle flexibility in the stomach. So my stomach size has increased a bit, which it probably wouldn’t have done ordinarily.

But other than that, I mean I suppose from a practical point of view, there’s not much difference between having had the urethral one or having the suprapubic, just one went into my urethra and one comes out of my stomach