Dave

In 2005 Dave had a severe spinal cord injury. He was aged 25. He had a urethral catheter for about three months. This was then changed to a suprapubic catheter, which Dave finds quite easy to manage. He changes it himself at home with the help of a carer.

In September 2005 Dave suffered a severe spinal cord injury. He injured himself while on holiday in Portugal. He dived into the water from the beach at ground level. He was taken to hospital in a state of shock, and was heavily sedated. He then had various tests, and doctors confirmed that he had broken his neck. He had surgery doctors performed an anterior fixation. At this stage Dave had a urethral catheter.

Dave was flown back to the UK to a specialist hospital. He was in bed for about eight weeks. He lost about four stone in weight and felt very weak. Then Dave was allowed out of bed for short periods of time. Eventually he was allowed up in a chair all day. He had physiotherapy and occupational therapy. Movement gradually improved during the first six months.

In December 2005 Dave decided to have a suprapubic catheter. This was inserted in an operating theatre with an epidural anaesthetic. After that the catheter was changed in the ward every four weeks. It blocked on two occasions and once this led to autonomic dysreflexia. This is a potentially life threatening condition that requires immediate attention. It occurs most often in spinal cord-injured people and is a reaction of the autonomic (involuntary) nervous system to overstimulation causing an abrupt onset of excessively high blood pressure.

Dave left hospital in early summer 2006. He went to his family home for a while and then returned to London, to his own specially adapted flat, where he now lives with his wife. He stressed that rehabilitation started in hospital but continued at home. He still has physiotherapy and does regular exercises. He has a carer during the day who helps him with personal care and who empties his bag and helps him to change his catheter every four weeks or when necessary. Dave employs the carer himself, with the help of the Direct Payments scheme.

Dave has a leg bag with a flip flow valve, which he closes when he has a shower. He has new bags three times a week and a new night bag once a week. His catheter is made of silicone. Dave has had a few urinary infections, which have been treated with antibiotics. He drinks plenty and takes cranberry juice supplements to prevent infections.

Dave goes back to see his consultant at the hospital every year. He has yearly ultrasound, MRI scans, and a cystoscopy to check that his bladder and kidneys are healthy. Dave leads an active life, not only working but also helping with a spinal injury charity, the British Neurological Research Trust.

Initially Dave shared experiences with other patients. He was also greatly supported by his…

Age at interview 31

Gender Male

I’ve never used a support group. I remember there was some psychological help and counselling service that was offered during the early stages. That was part of the specialist hospital. I didn’t, whether it was a personality issue, I didn’t find the person that was assigned to me particularly helpful or necessarily useful. I think some of the questions were a little bit strangely put. You’d be asked questions like, Do you feel, on a scale of 1 to 5, happy, not that happy And it was that kind of formulaic approach. It didn’t really do much for me, to be honest, and I found it a little bit frustrating to have to answer fairly inane and inept questions.

So certainly I think for me, trying to regain or maintain a normal and close interaction with friends and family was for me the best way. And obviously I did develop friendships with other people who were experiencing similar situations to me. You know, there were a lot of people of similar age who’d suffered similar accidents.

So I think chatting through the situation and shared experiences with them was important as well as trying to continue with your relationships with girlfriend, family, and friends. So I guess a combination of those.

Obviously there were as well some of the medical professionals, the nursing team, who certainly helped. But I think the most help is from people that know you best probably. So that was for me what worked. I guess it’s different, different things for different people.

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When Dave left hospital, he had numerous carers but now he employs his own. Dave wants some…

Age at interview 31

Gender Male

What sort of medical follow-up did you have once you’d got home? Did the GP or district nurse come and see you regularly or any other health professionals?

Yes, the district nurse would come out quite regularly. And moving out of hospital was done quite closely liaising with district nurses. I also used a local care agency, who would send carers round at various different points during the day to help me get up in the morning and, you know, do one or two things.

So there was a support network there from what you might call medical professionals I guess. GP, I didn’t see too much of my GP and still don’t. But, you know, I guess for prescriptions of the odd urinary tract infection or anything like that, my GP has remained the same since, well, for ever really.

People from the care agency, what can they do? They can just help you with sort of personal care like bathing?

Yes, exactly, getting dressed. And, yes, they didn’t have anything to do with the catheter necessarily. They would change the night bag into a leg bag and help fix it on my leg, which is what I do.

Have you had any contact with Social Services?

I have had some. The first time I was put in touch with Social Services was through a liaison officer, I think he was called, at the hospital. Obviously Social Services in my circumstance was primarily to assess care needs and then implement the sort of all-over package that would enable me to organise the care how I needed and wanted it. So once that was done there hasn’t been too much interaction with Social Services. But certainly initially there was, yes.

So was that so they could assess what needed to be done and how much money you would need?

Yes, exactly. They assess what level of care is needed and then based on that make a judgement. As I said, I’m on the Direct Payments scheme, which means that I manage the situation myself.

Do you employ a carer all day?

I do. But I don’t need help all day, but there’s just somebody there. And that’s the way I choose to do it rather than having somebody come in to my house from an agency twice a day, when you could have two different people coming in and four different people in a week and ten different people in a month. And I much prefer the consistency and the control that I get by having somebody on call all day.

Is that what you found when you tried an agency? Did you get different people coming?

Yes, yes, and that’s certainly a frustration with agencies. And different people have varying degrees of familiarity with how you like things done, how things should be done. So, you know, with changing people you’re for ever explaining how things are done and requesting how you would like things done. And a degree of consistency in carers is very important. Well, I certainly find. But, at the same time, an amount of change is good as well. You don’t want somebody the same all the time.

So how do you manage that? Do you employ somebody for a while?

Yes, I manage it myself. I alternate between two carers over time. And it’ll be on a couple of weekly basis.

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Dave says that having a disability can strain a relationship but that a difficult situation can…

Age at interview 31

Gender Male

It puts a lot of strain on all relationships. And it’s certainly difficult to continue to develop relationships so-called normally alongside having to change your life and have changes forced upon your life. So it does alter dynamics.

And nobody likes to think that they are dependent on help from other people. But unfortunately, bits and pieces along the way, you are dependent. And that is difficult and puts strains on, does put strains on relationships.

But there are also sides to difficult situations that can strengthen relationships as well. So there are various aspects to consider when it comes to relationships, both positive and negative I think.

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

Age at interview 31

Gender Male

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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Dave washes around the catheter site every day with saline solution. He takes care not to pull…

Age at interview 31

Gender Male

Since you’ve been home, can you say a little bit more about caring for your catheter once you’re at home? Was it very different once you’re at home? And replacing it by the district nurse?

Not too different in that, every day, I would wash around the catheter site with saline solution. I would move the night bag into a day bag. That [the night bag] would be taken off. I think overnight and during the day I’m still very careful that the catheter doesn’t pull. So I make sure there’s plenty of give in the tube on the bed, and then again when it’s attached to my leg I affix it in three places to make sure that injury to the catheter site is minimised because you don’t want the catheter to pull on the site.

So you have special straps that you put round your leg?

Yes, I have two straps that are round the leg bag itself and one that I put higher on my thigh to grip on to it.

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Dave described what it was like to have a suprapubic catheter changed in hospital. He found it…

Age at interview 31

Gender Male

Did you have to go back to theatre for that [the catheter change] or did they do it at the bedside?

No, that was done at the bedside. After the insertion of the suprapubic catheter I didn’t go back to a theatre for any changes or anything beyond that. It was always done at the bedside.

Can you just go through what happens when you have your catheter changed at the bedside?

Having your catheter changed at the bedside requires obviously the area to be sterile. And the balloon on the inside of your bladder is deflated. The water is taken out of that balloon, then the existing catheter is taken out, a new one put in, and the balloon is then inflated. That’s about it really. Certainly the first time my catheter was changed after the theatre, it was done by a doctor.
Subsequently, it was then done by nurses. And then when you’re released, it’s a district nurse. And when you become quite familiar, you can do it yourself and do it at home, and it’s done that way.

So apart from the emergency time when it was blocked, when you were in hospital, how often did they change the suprapubic catheter?

Yes, four, every four weeks because of the susceptibility of spinal cord injury patients to debris in the bladder and risk of blockages. So they say that every four or five weeks it should be changed. I know that outside of spinal injuries, I think it’s changed every couple of months, maybe every two or three months. But I certainly change mine more regularly than that.

Could you feel anything at all when that was being changed?

Yes, it is uncomfortable when it’s changed. it’s not too bad. I find that helping the situation is to use a mildly anaesthetic based lubricant. Instillagel is what I use. You just use it round the site. It makes sure that it comes out a bit easier. When the new one goes in, it numbs around the area. So I certainly think that that helps and that’s what I do.

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After Dave left hospital, the district nurse changed his catheter a couple of times. He then…

Age at interview 31

Gender Male

How often do you change your catheter now?

Every four weeks.

And who does that now?

That’s done by a carer in conjunction with me. I don’t have the manual dexterity to do it all myself. So that’s done lying on the bed. And, yes, having seen it done numerous times. I guess it was probably done under the supervision of the district nurse once or twice. But then it’s very straightforward and you know what to do. And you have to be less careful than in a hospital about the cleanliness. But obviously still wear gloves, put Instillagel round the site and, you know, just generally make sure everything’s kept clean.

So is this a carer from a care agency?

I employ a carer myself.

Sometimes agencies don’t allow their people to do things like that.

No. I have used care agencies in the past and I don’t think they, well, no, they didn’t ever change a catheter. But I employ help directly now and, yes, the, the person that I employ
Does what you want to?

Yes. And I’m pretty particular about, you know, changing a catheter and what has to happen. I know exactly what I’m doing.

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Dave describes what happened before he was catheterised in hospital. He’s been paralysed from the…

Age at interview 31

Gender Male

I suffered a severe spinal cord injury in September 2005 at the age of 25. I was living and working in London at the time. Three years after graduation from university I went on holiday to Portugal with a number of friends. One day while on the beach I went down to the water for a swim, dived into the water, into a wave off my feet, and suffered a spinal fracture of the neck, resulting in immediate paralysis from the neck downwards.

I suppose luckily I had two friends that were with me at the time, because obviously complete paralysis means you can’t move. So I was face down drowning in the water, but the two friends and some passers-by managed to get me out of the water in time, on to the beach. I have to say that it was a fairly painless experience, and certainly the most difficult sensation was drowning.

Coming out on to the beach, I was then taken to a local hospital. I was on the Algarve in Portugal. At which point I was told that I was going to have a series of tests. If I had indeed broken my neck, which they thought I might have done, I would then be airlifted to Lisbon and operated on.

About an hour later they came back and said, Yes, we’re taking you up to Lisbon So, yes, helicopter up to Lisbon, stayed there in traction overnight with my neck to extend the compression fracture. Then I was operated on the next morning with an anterior fixation of my neck. I then remained in Lisbon for a further eight days before having an air ambulance back to a specialist hospital spinal injuries unit.

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Dave realised he had a blockage when his urine wasn’t draining properly. Another time he had…

Age at interview 31

Gender Male

Do you ever have to wash the bladder out with anything?

Yes, occasionally I wash the bladder out. Certainly if there was any sign of minor blockage, a bladder washout would be used. Recently I haven’t had too many problems with that. But I certainly did have one or two occasions in hospital when the catheter did actually block, would have to be removed and a new catheter inserted because of debris in the bladder.

How did you know that? Did somebody realise there was nothing draining?

It was realised nothing was draining on one occasion. Another occasion I suffered autonomic dysreflexia, which is your blood pressure rising and severe headaches. Which is the body’s way, in the case of spinal cord injuries, telling you that there’s a pain or, in the case of like a bladder issue, a blockage, that your bladder’s not draining. So it’s the body’s way of sort of telling you that, although you can’t have the sensation of the bladder filling up, it’s an indication that something is wrong.

Can you remember what that was like?

Yes, it’s a splitting headache at the front of your head, sweating and generally feeling very unwell.

So somebody had to come and change the catheter fairly quickly?

Yes, you have to change the catheter very quickly.

Did you have to go back to theatre for that or did they do it at the bedside?

No, that was done at the bedside. After the insertion of the suprapubic catheter, I didn’t go back to a theatre for any changes or anything beyond that. It was always done at the bedside.

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Dave describes how he looks after his catheter and catheter site. He occasionally uses a bladder…

Age at interview 31

Gender Male

I was certainly made aware [by medical staff] that you’re prone to bladder infections, which should normally be treated with antibiotics.

You’re certainly encouraged to drink plenty of fluids. Because of the increase in susceptibility to infection, fluid intake is important and keeping the catheter site clean, washing regularly with saline water is important.

Is that round the site?

Yes. And what else?

Do you ever have to wash the bladder out with anything? 1

Yes, occasionally I wash the bladder out. Certainly if there was any sign of minor blockage, a bladder washout would be used. Recently I haven’t had too many problems with that. But I certainly did have one or two occasions in hospital when the catheter did actually block, would have to be removed and a new catheter inserted because of debris in the bladder.

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