And in general your interaction with health professionals, how has that been over the years?

it’s fine. I mean what health professionals have done for me is mammoth. I’ve been helped enormously by some tremendous people, great kindness. The nurses in the spinal unit I remember being incredibly proactive about, they were really good at helping me manage all the different bladder options. They were better than the consultants to be honest, they were much; again it’s that whole thing about I think bladders and catheters being devolved to nurses. I think nurses know a lot more about it than the consultants, the actual practicalities of it.

Maybe that’s something that has to be changed if we want to develop a new catheter. But I can’t fault the hands on care I’ve had from the nursing staff in particular.

The information I’ve generally had from them [health professionals] has been very good. But some information, you just don’t get any at all. You get told nothing much whatsoever. You get given something and are expected to go and get on with it without asking any questions.

From what I’ve seen over the years, when I originally saw the urology team at the hospital, back in the early nineties, they were very closed, not wanting to really tell patients very much, whereas now they’re much more open and forthcoming with information than what they were, which is a massive improvement. That’s what it always should’ve been like.

But I think it’s mainly a generational type thing, the change. The old school doctors of the day didn’t talk to patients very well indeed. But the newer doctors, they talk openly to patients and they treat you like a human being.

Oh that’s good.

You were always just a number to them, whereas now you’re a person with a name. And they’ll talk to you as an equivalent, not just a patient with a problem.

So you feel you’re treated as a human being when you go there now?

Yeah.

How have you felt about the healthcare, have you been happy with the healthcare and information you’ve been given or they haven’t really given you a lot of information?

Derek’ You’re just a patient love, aren’t you?

Wife’ You’re just a number, aren’t you?

Derek’ I mean at one time they just tell you what they want you to know, but they’re very busy in hospitals and you don’t like upsetting them.

Wife’ You’ve got to be grateful for what you get done I think.

I saw him [the consultant] a couple of times, and he referred me for various urinary studies, and flow charts and all the things that you get done. But he didn’t appear to be either wanting or feeling that he could offer me any help.

You then saw a different consultant who was much better. Can you tell me in terms of healthcare, one was a good consultant and the other one was perhaps not giving you all the information you wanted. Can you tell me the difference between the two?

Attitude towards the patient. I think he’s probably an intelligent and quite a whiz kid, the one who spoke to me unpleasantly. And he said, Well you shouldn’t be coming to me now, it’s the beginning of the academic year and I’ve got a lot of teaching on And then he added, And I am a busy man

And the other consultant was contacted by a mutual consultant who you will know. And he rang me up and said, I hear you would like some help. I can see you tomorrow afternoon if you can get into hospital

Tomorrow afternoon, well that’s very, no waiting around there then?

No waiting around there. And was straightforward and kind and said he thought that it was unlikely that he would be able to stretch my bladder to behave itself but he would have a try. And that’s why he wanted me to have a full anaesthetic instead of a spinal, so I did.

And how long did you have to wait for that?

Oh he said, I think I can put you in on my next list, which is next month

Right. This was on the NHS care?

NHS care.

And communication with the staff and all that sort of side of it, was that good?

I have my own, no I shouldn’t say my own, because I have hygiene standards that I feel are actually just the hygiene standards that any health professional should adhere to. And many health professionals do but some do not. So there were instances where people were coming to deal with me, hands on, and without washing their hands. And so I had to say, I’m sorry you can’t touch me until you’ve gelled your hands or washed your hand. So I did have some of those issues.

That must be quite difficult to be strong enough when you’re in hospital as a patient to tell the doctors to go and wash their hands, it must be quite, you must be quite strong.

it’s very difficult and one of the things that slightly helped, well not slightly helped, that did help, was my husband was there to support me, that was really important. And I mean my husband throughout the whole thing has been extremely supportive and it really, really helps. As strong as I can be, sometimes, and as vocal as I can be sometimes, and with my level of knowledge disability wise because I’ve been involved in the disability world for over ten years, it is still hard for me when it comes to me, my own body, other people in authority who are taking care of me, have the control i.e. doctors, nurses, it’s still really hard to stand up for what you want.

So I’d say to people get as much help and support with you as you can and remember it is your body and you need to look after it. And sometimes some health professionals are not good at that and are not doing the right hygiene procedures.

Have you got any messages for health professionals?

Ah yes, try to standardise the procedure for the replacement and the understanding of catheters, particularly the suprapubic catheters. Try to have a standard procedure that people can follow, so it’s written instructions which they can look at and learn. So that they all do it more or less the same way, the way it should be done. Because so many doctors differ in their understanding of how to insert a catheter, and even nurses, and about inserting catheters and the way to take them out, the way to put them in again, the way to realise that they’ve gone in sufficiently without keep trying to push them and abrasing the membranes of the bladder which incurs, which makes bleeding begin.

You’ve had particularly difficult experiences with GPs?

Yes.

Do you think GPs should have extra training?

Well I certainly do, yes. I certainly do, a lot of extra training if they want to do that procedure. Some of them shy away from it. they’re not confident enough to do it, they shove it out, they shove it out to the nurses and the nurses are reluctant to do it. So they pass the buck and pass the buck until you find out nobody really wants to do it for fear of making a mistake and getting sued or something like that, under the present climate of litigation in that sphere.

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.

What message would you want to give to district nurses?

Listen to the patient, as long as he’s got experience. If he’s just come out of hospital three weeks ago and he says, Oh they used to do it that way at least listen to him. But these, no, I had an accident thirty three years ago, and these are nurses, some of them have been coming in to me, that one that doesn’t like putting catheters in, fifteen years, and she just completely blanked me. And I’m not being funny but I know my stuff. I like to think and you know you only have to speak to my nurse and I think she would vouch for me; I pretty well know my stuff, and if I don’t I’d be the first onto her gently to say, What do you think of this And she’ll give me some good ideas and try and sort it out.

And in terms of good district nursing or good nurses
Good district nurses are the ones that always say, How can I help you today What can I do for you Not, This is what I’m gonna do for you And I say, Well, I don’t think that’s gonna work today becauserdquo; blah, blah, blah. And they start arguing with you or you know. You know it’s just a discussion isn’t it? You want to find out what’s best for me, not for them, they’re doing a job. I’m sorry but they are.

I feel quite sorry for the district nurses because my changes can be quite tough and they, for the first, I’ve been living here for four years now, and I think for the first year they turned up in pairs because they didn’t really want to come and deal with this change on their own.

But now they’ve got the hang of it, practiced enough on me, so they could do a pretty slick job of whipping one out and getting the next one in.

So at first it was a urethral catheter?

Yeah.

How long did you have that one for?

I had a suprapubic, probably after five or six weeks.

After so that was quite short term.

Yeah.

And you’ve had that since?

Yeah.

Yeah.

And I’ve had it re-sited once, the time when the district nurses came and took out one and couldn’t get the new one in, so I had to go back to a urethral one for a couple of weeks till I could go back to surgery and get the new one, a new suprapubic one reinserted. So just one reinsertion in nine years.

How have you felt with the district nurses? Is it someone different every time?

When I first left the hospital, I was living in a small village in Dorset and the district nurse team was just three or four of them. It was very small and quite often it would probably just be two of them that came, so that was easier.

Moving here into a bigger town, I found there was certainly a bigger team and more changes of faces. But actually now I don’t, they’re quite good and I tend to see the same few people within the team.

And I know the, I don’t know what’s she called, Community Liaison Nurse at the spinal unit. She came and did a bit of a teach-in on my catheter change because it can be a bit challenging. So I think we had about 11 community nurses appear and see how to change it.
So you know there’s plenty of them out there, but I tend to see the same few which I think is better in the respect that they get a bit more practiced and it does seem to be less problematic if I’ve got somebody that’s changed it a few times before. So that’s good.