People with a long-term indwelling catheter may manage well at home without much professional help (see ‘Informal care: caring for a relative with a long-term catheter’). However, some people, particularly those paralysed through a spinal cord injury, need professional care when they leave hospital. Some may need full time care. Professional care at home is usually provided by the GP, district nurses and paid carers. It may be paid for by the local Clinical Commissioning Group (in the case of Continuing Care) or the local authority, which is responsible for assessing people’s care needs and providing services if they are eligible (see ‘Work and Finances’ for details on who pays in which circumstances). Some people pay for extra care themselves. It may take time for people to adjust to having a professional carer in the home. Vicky was pleased when she found a good carer who could stay for a few years.
It took Vicky a while to adjust to having a ‘total stranger’ in the house, but when she found a...
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Age at interview: 40
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Have you had the same carer over the years or does it change?
They do change, yeah. Usually I have a permanent PA [Personal Assistant] for as long as they stay. My current PA’s been with me for just over a year. And the two before that worked with me for two and a half years. But they have breaks so, while they’re away, I’ll often get an unknown face and sometimes somebody who might come a few times, which is nice.
How have you felt about the carers and care over the years?
It certainly takes a lot of getting used to. I think when I was first in the hospital, there was lots and lots of us, I guess 40. I think they have a 48 bed unit and not so many staff. And you think, oh wouldn’t it be nice if I’d got someone to help me all the time, and I can do this or do that, and that it’s going to be so much easier. Rather than trying to drag a nurse away from something to perhaps set you up with something so you can get on. If you can do something independently, like painting, if you attach a paintbrush to my hand and squirt some paint out for me in a palette I can get on. I’m quite happy for a while, independently doing that, but you need setting up to do it.
It’s like a lot of things in life; you need that help to get you to your point where you can move forward with a bit of independence. So the idea of having 24 hour live-in care was great when I was in hospital. I thought fantastic, I’ll be able to do whatever I want, and it’s going to be really great, compared to the compromises that you make in the hospital because they’re so busy the nurses.
And then I moved out and suddenly it dawned on me that I’m having this total stranger come to live with me and I don’t know anything about them. And this is it for the rest of my life. And it was a really hard adjustment to make.
When you’ve got somebody who is good, it’s brilliant. And you learn how to live with carers. You learn the way in which it’s easiest for you and what suits you and what doesn’t.
When you get a good carer, it’s great, because life is so much easier. And when they stay for a few years, like mine have, then it’s really good because at the moment I have somebody just for 8 days because my regular PA is on her break. And so for the last 8 days I’ve had to remember, “Oh don’t forget to tell that person what day the dustbin goes out.” Whereas the permanent PA’s know all of this. So it’s very much easier with a permanent PA and they know everybody in your life and they know every, the way your life runs and how things work and how things don’t work more importantly in some cases.
I’ve been just over nine years paralysed now and I think probably the first five years were just hideous really, not just care but just getting used to all of it, just felt like you know life had ended really. But after five years, slowly but surely creeping back into life a bit, you adjust. And now it feels a little bit, I don’t know some days I feel like it would be strange to be able to walk again and do things for myself.
Melanie pays for her council carers, who come in every morning. She said it’s ‘functional’ and ...
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Age at interview: 55
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And your carers. Have you found it fairly easy to find carers? Do you get the National Health Service?
I have the local council. I pay for them because I’m still earning. I pay for my council carers who come every morning and they help me change my leg bag and they put the leg bag in its net every day when they put my trousers on. Yeah, it’s fine. It works. It’s quite easy now, it’s functional. It’s not nice but the condition isn’t nice, but it’s the best solution for me at the moment.
Some of the people we interviewed were dissatisfied with the care provided by the local authority because there was no continuity of care and standards of hygiene were poor. Others complained that there were too many district nurses in the team to provide continuity of care. Peter Z said that different carers visited him at different times every day, between 9.30am and 12pm and in the evening between 6pm and 9.30pm, but they were ‘in and out like a shot’. They came in briefly because he couldn’t empty his own leg bag. He opened the tap and let the urine drain into a bucket, and they emptied the bucket twice a day. A carer also helped him shower twice a week.
When Peter Y could no longer pay for his own care he had to accept care provided by the local...
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Age at interview: 65
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Everything went fine probably for two and a half or three years. I had very good care. I changed catheters every twelve weeks, on the day, and there was never any consideration of doing different. I was obviously free from infection of any kind for two and a half to three years, and that was a period of good care.
Then I had to change my care system. I simply couldn’t afford to pay for my own care all the time. Which I’ve not, because I had been given supplemented, a little bit for four or five years, but I’d been paying the full amount basically. And as my business had stopped, I couldn’t afford to do it anymore.
I then went onto local authority care, so there was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened I had no idea what had happened. I just knew I needed a nurse very quickly ‘cos it hurt, you know, headaches and so on.
Then it just got worse and worse and worse. So then I was having catheters changed every week, every two days. And it got so that the situation became untenable. I did have acetic acid bladder washes, a series of six for six weeks, and that did work. And that demonstrates that perhaps what the nature of the infection was I think.
This period of care ended in November of that year, which was about eight months, nine months, and that basically nearly killed me. I ended up with a twelve-hour blockage of the catheter. And because I was unattended overnight, all I can say about that is I don’t recommend it to anybody. And secondly, apparently it’s not enough to kill you but my God it feels like it. And I think such events do leave you a bit mentally scarred, you know I had to fight pretty hard to get rid of the nervousness it might cause.
The next day I started, through the National Health Service, Continuing Care, to have a full time live-in carer. And that’s why it lasted nine months because it took so long to get approved and so on. Immediately we were able to think sensibly about the situation and the situation improved. It did take eighteen months, and now we’re in about 2009/2010, 2009 actually. It took, generally speaking, bearing in mind a twelve hour blockage causes problems for kidneys, bladder, everything in that area. And it took about 18 months to get back to some sort of normality.
When Gavin left hospital he had care provided by district nurses. There was little continuity of...
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Age at interview: 28
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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.
Some people said that some carers were better than others, and that a good carer listened to their needs and, if they needed to show them how to do something, they watched carefully. Several noted that experience was also important.
Care provided by the local authority is not always poor and can be excellent. John Z, who was diagnosed with bowel cancer in 1996, said that carers who visited his house four times a day looked after him well. He wondered if this was partly because he used to work in the NHS and he knew who to ask when it came to benefits and paying for his care. A few other people also told us they had carers coming in briefly in the morning and sometimes in the evenings too. Sara’s carers visited her at set times during the day and emptied her leg bag.
John Z felt that he was very well looked after. Carers paid by the local authority came to see...
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Age at interview: 64
How often does the day carer come in?
Four times a day. And she does a sit on a Thursday. At about two o’clock, there’s a chap then from social services come in to help me with my correspondence, my money, sorting my finances out and what have you.
So I’ll be really honest, I’m well looked after, I’m one of the real lucky ones. I’m fairly well looked after but, having said I was a Personnel Officer [in the NHS], I know whose door to knock on. I know who to ring up, which is unfair, but to me it’s not you know, it’s not what you know, it’s who you know. And it’s really helped me that a lot.
If the local authority decides to provide services, people have a right to ask for Direct Payments instead of having the service arranged by social services. Direct Payments give people more flexibility in how services are provided. By giving people the money instead of social care services, they have more choice and control over their lives, and can decide themselves how care is delivered.
When Dave left hospital, he had numerous carers but now he employs his own. Dave wants some...
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Age at interview: 31
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.
Michelle has a full time carer. She had a spinal cord injury when she was 16 years old. Her carer has been funded by a number of sources, including The Independent Living Fund (ILF) which helped people live independently in the community. The ILF was closed in 2015 and the funding and responsibility of ILF care and support needs transferred to local authorities in England and the devolved administrations in Scotland, Wales and Northern Ireland. See the GOV.UK website for more information.
Michelle’s carers are specially trained to work with someone with a spinal cord injury. When she...
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Age at interview: 45
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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.
Hayley, who was born with spinal muscular atrophy, employs James as her PA. Martin employs his own carers, who are funded by the ILF and the local authority. He stresses that it is important that people choose their carers carefully.
James explains what he does for Hayley every day. He says some hospital nurses can't understand...
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What does caring for Hayley involve on a day to day basis?
Basically, right, start in the morning. Get up, pretty much first thing Hayley does is have a pee. So I take the bottle to the bed, open the catheter valve, she has a pee, clean up, turn off. Coffee, then she has a wash.
Which you have to help with?
I wash her; yeah I wash her and dress her. Put the sling on, then she’ll do a bowel movement with the aid of a Peristeen. So basically it’s similar to colonic irrigation.
A bit like an enema?
Yes, it is. But you pump the water in and then just let it wash out basically. So yes, we do that and then get her dressed. Hoisted into the wheelchair, then this probably takes about three, it can take about three or four hours. But you see before the Peristeen, a bowel movement was taking three hours on its own.
Is that every day?
Yes, so then when she’s up, we’ll have breakfast and tablets, supplements as well. And then we’re at lunchtime. So it’s pretty much lunchtime by the time we’ve eaten breakfast. And then she’s pretty independent for the afternoon. We have dinner, pee probably three or four times throughout the day and then bed, teeth, you know, undressing, hoisting onto the bed and support, putting all the supports in and hopefully get a good night’s sleep……
So from the point of view of the catheter, what’s your role?
Just daily maintenance really, cleaning it, changing the valve, washing it. And we put a dressing around it because sometimes the site gets quite mucky, so we just put a dressing around there just to stop it from getting onto clothes more than anything.
What’s been your experience of working with health professionals such as the district nurses? Has that been good or bad or varied?
It’s quite varied. It depends. Actually the district nurses, they’ve been pretty good. Hospital nurses, a lot of them don’t like, can’t understand the fact I’m a carer. And they can’t understand the fact why I insist on helping Hayley in hospital until they see the care that she needs.
Why can’t they understand that you’re the carer?
Well a lot of people can’t understand why men are carers. And you get that, a lot of professionals as well. I’ve actually had salesmen sitting there saying, “Well don’t you think it’s really weird men being carers?” And I’m just thinking, “Hello?” You know, and I just think you just, just don’t have a clue.
That’s really important.
Yes it is, I mean really and truly people’s attitudes stink on the whole. Yeah, they really do.
They [men] are often the best carers.
Well I mean I don’t know, that’s the thing, I do think so because you know you just don’t think about it, you just do it.
Why do you think people think that men shouldn’t be carers?
I don’t know because I think traditionally they see it more of a woman’s role being the carer and nurturing one in a relationship.
Some people we interviewed spent periods in hospital because of bladder problems or other illness. For more about professional care from hospital doctors, nurses and GPs, see ‘Perceptions of health professionals and health care’.
Three people we met were living in residential care homes because they needed full time care for a serious health condition. Alok was there because he had tetraplegia after a spinal cord injury. He said that, apart from other tasks, his care assistants carefully monitored his urine output. He said, ‘They’re all professionals. They know what to do, how to do it and when to do it.’ David had had a major stroke and lived in a home with nursing care. His wife, Narelle, told us about the professional care he received at home and then in residential care.
When Narelle’s husband, David, left hospital he went home. On the whole Narelle was pleased with...
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Were you happy with the care from the district nurses or were there ever any issues or anything that you felt could have been improved?
Narelle' No. I think they were very good. They tended to send their more experienced people. At that time when David was at home, he only had one carer in the morning and one at night. And in fact he didn’t really need the one at night. We could cope with that. It was just, it gave me ten minutes break in the mornings. But if I thought there was something wrong, then I’d press the buttons and they’d come and sort him out.
Are you alright He probably hates me talking like this, but I mean we haven’t got any choice.
And was this care, was it through your private health scheme?
Narelle' No, no. It was local authority.
Yes. Was that quite easy to come by or difficult? If somebody is in a similar situation and they want to find out what kind of support can we get, were you told about all of this or did you have to find it all out for yourselves?
Narelle' No, on the whole, from day one, it was 24th August 2006, we just went into the system and it was brilliant. Everybody did everything right. I think David was a huge fighter and determined he wasn’t going to be beaten by this, and he went along with everything. And was, oh, just a good person at knowing what to, what he should do and what he shouldn’t.
David' What is that?
Narelle' Didn’t you?
Narelle' There were some issues that were rather, I don’t know, bad, where carers didn’t bother doing things. So again I slightly hit the roof and demanded that they come and sort it out. And it was sorted out.
David went into hospital again. Then after a short period at home, he went into a residential...
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Narelle' Quite often there was a weird sequence of events because I had David home for four months after six months in hospital. He then had one seizure, which I panicked, and he went into hospital where he was for two weeks. They couldn’t find anything untoward. He had some physio while he was there and then he came home. And we think it was all to do with UTIs [urinary tract infections.
So he then was at home again. We went down to Oxford for Christmas. We led a fairly normal life, didn’t we, David? And then the following February, this was about fifteen months, eighteen months after the stroke, he collapsed one morning. It wasn’t a stroke and I called the ambulance and they took him in. And he was in hospital for four months, which is where they started increasing the medication for the epilepsy. He was able to walk out, just, with a, and come home, walk up the stairs, but within two weeks he was in a hospital bed at home.
And that’s when we had two carers four times a day. And they basically knew how to handle the catheter, ‘cos it was suprapubic by then. And then the Continuing Care realised that we just couldn’t keep up this pressure and we were very, very fortunate that a room became available here.
Yes. Did they tell you about this nursing home themselves? Or,
Narelle' No, I actually knew about this one. I knew people who’d been in here. But the National Health Service was fantastic and if there was anything, they came and they talked to me and they explained to me. The Continuing Care people were brilliant. And so David was just one big package of problems, weren’t you David? Yes. No speech, incontinent by this stage so….but you’re happy now, aren’t you? Well as happy as you could ever be in this situation.
Do you like it here David?
Are you happy here?
That’s good. Do they look after you well here? Do they give you good food?
Narelle' That means yes.
Is it good food?
Narelle' Wholesome comfort food that most boys liked when they were at prep school.
Rachel’s husband, Roger, was also in a residential home with nursing care. She didn’t trust the nurses to care for him properly. She often slept in his room to make sure that the nurses turned Roger every two hours and to check that his catheter was draining (see ‘Informal care: caring for a relative with a long-term catheter’). Roger mentioned ‘continual problems with changing the suprapubic catheter’. He thought that the GPs who came to his residential home to change his catheter needed better training (for messages to health professionals see ‘Perceptions of health professionals and health care’.
Last reviewed October 2018.
Last updated October 2018.