Most of the people we interviewed found support from several sources, and talked about both the practical and emotional support they’d had. Sharon, for example, who had retention and sometimes could not pass urine without a catheter, said, “Everyone’s supportive, my husband is, my Mum, my children, friends, the district nurse, she’s very good, and my GP. I’ve got a different GP now, but everyone’s been supportive.” Carol, who had endometriosis, found most support from family and friends.
I did find that the actual support side on catheters was quite limited. That when you go home I never had district nurse support, not that I felt I needed it but there would have been times, for example I got an infection one time and had to go back to the hospital, which is an hour’s drive away. There were times when it would have been useful to have had some additional support like that, so someone to call. But then I didn’t need someone every day to sort of help me change the bags or look after them. It was actually quite straightforward.
So where do you look for support? Have you got sort of family members that support you or is it more to do with friends and support groups?
I’m very lucky with my friends and my family. My Dad, every time, I mean it’s hard for family isn’t it and friends when you end up in hospital a lot. My Dad always makes light of it, and he writes great catheter poems to me, which are very entertaining and I’m sure he enjoys writing them. But I think he’s starting to run out of ideas.
Stewart had had a catheter ever since his prostate operation. He found it very helpful to attend a local continence group. He talked to others about their treatment and the equipment they were using. Other people also found help with their catheters from various sources, including their local continence advisor, their urologist and the Bladder and Bowel Foundation, a UK charity that gives information and advice on bladder and bowel control problems.
You mentioned that, about once every three months, you go to a continence group, can you tell me a little bit about that?
Yes. Well it’s a mixture, there are men and there are women, mainly men. All in various stages of treatment and some of them much worse than I am because they have lots of other problems as well. I would say it’s a group that maybe ten or twelve go and usually, very often there’s a speaker, or one of the nurses will speak about something. And then a variety of subjects, mainly related, well they are related to urology one way or another. And then there’s always a chance to have a discussion and asking each other questions and we’re encouraged to do that. And I find that’s been very useful to me. I really would praise that very, very, very much. And now it’s been, I don’t know how long it’s been going now but two or three years I think.
You mentioned before we started the interview that you would have found that group really helpful right at the beginning?
How has it been really helpful for you?
It has been very helpful, mainly through talking and chatting. And knowing that there’s nurses there and helpers there that are willing to talk and able to talk because they haven’t got, on that particular morning or afternoon, they haven’t got a ward to see to, a ward of patients. They can devote themselves to answering our questions. And of course it’s useful to talk with each other now. You get to know what sort of treatment, what sort of equipment different people are using. Yes, I find that’s been very, very useful. I would certainly urge anybody who’s new, you know, to go along to a meeting like that.
There are various reasons for using a urinary catheter (see ‘Reasons for needing a long-term indwelling catheter’), and the reason may affect where that person turns to for support. Some people had found help from others who had been through a similar experience. They found support and information about various aspects of their condition, not just catheters. Vicky, for example, paralysed from her shoulders down, had been greatly helped by others in a similar situation.
Yes, it was about five weeks, five and a half weeks after the injury that I could sit up. So as soon as you can sit up then you start to chat to people, it’s very nice. It’s quite hard, when you’re in bed, when you’re acutely injured, even if people come to see you in a wheelchair they’re just that bit too low. When you’re lying on your side looking at somebody who’s not quite at the right place it’s quite hard to see people. And when you see them sat upright, you think, “Oh you look like that.” Totally different ideas when you see them laid down and in the chair. So that was really great as well.
How helpful was it to talk to other people in the same situation?
Massively. I think that was the best part. I mean obviously being in a spinal unit you’ve got specialist care. You’ve got people that know exactly what you’re going through and they’ve seen it hundreds of times before. So that was great, but actually having the people there who were around you, who’d done the same thing and are going through exactly the same thing, you just, I think we probably did about oh probably ten hours of therapy every day it felt like, nothing arranged just all sat in the dining room, day room, visitors room whatever you want to call it, talking about, the subject was always about, “What I was”, and “I used to be able to do this,” and “I used to do that,” and “I was this etc.,” it was a whole sort of phase, almost like mourning of all these things that you’ve lost. And trying to get to grips with how on earth you’re going to move forwards.
It was very nice occasionally to meet some people who were further down the line. So you got a little bit of perspective because it’s quite hard to know what on earth life’s going to be like really outside the hospital. And I stayed for a remarkably long time. I was there for a year and a half, so I think the longer it went on the more I was thinking, “How do I,” “How am I going to cope when I leave?” Whereas actually now I’ve been out for seven and a half years and if I have to go back for anything I think, “Oh no, I don’t want to go back.”
Dave pointed out that different people find support in different ways to suit them. After his accident, when he became paralysed, he was offered professional counselling which the hospital provided. He didn’t find it helpful but found support from others.
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.
Several people also found support from charities or organisations catering for the needs of people with similar conditions. These didn’t particularly focus on problems caused by catheters. Richard, for example, who had a spinal injury, found information and support from the Spinal Injuries Association (SIA), the leading national charity for spinal cord injured people. Dave, also with a spinal cord injury, found support from a charity called Aspire, which offers practical help to those with spinal cord injuries. Aspire contributed to the cost of Dave’s wheelchair. Some support groups help people with a caring role. Pat looked after her husband Rob, who had cauda equina syndrome (a serious neurological condition). She talked about her involvement with Carers UK.
My daughters joined me because they realised I might need help, when I came home. But it’s the local one. I support the UK one and read their literature but the local one is very good. They run a carers cafe once a month. Ours is the last Saturday in the month. And it’s very well run. We can’t with our family commitments always get there but it’s for carers too. You can have your nails done, you can have your hair done, Rob can have a bit of physio or chiropody. We do go regularly to our own chiropodist but it’s nice to have cups of tea, people to talk to.
So you both go to these meetings?
We both go yes, and I think they do have days out and they do courses. So when I was really restricted going out I did do a microwave cookery course and it was fun.
Locally is that?
Locally yes, there’s a big centre where the local carers meet and there’s various rooms. And a lovely lady, she’s now retired but I’m sure they’ve got someone else, and I got up to wash up and she said ‘No, no this is your morning off, you don’t do any of it,’ I thought “wow”.
Oh that’s lovely.
Yes it was fun, great fun.
A lot of the people who work, are they volunteers?
Their services are given free on the Saturdays. I don’t know how it works in the week because they seem to have different groups. I imagine they’re paid. But they’re very caring, lovely, smiley people.
Unlike Pat, who felt supported by Carers UK, Rachel felt unsupported. She cared for her husband, Roger, who was in a nursing home due to a spinal cord injury. Rachel felt that others could never understand her difficult role.
Are there organisations specifically to help you as a carer that you could get in touch with?
There are but they’re hopeless. I mean really truly hopeless. It’s just a front. I said, “Okay if you really want to help me,” it’s what I feel like saying. Because of course I can’t because it would be impolite, but have they ever slept at the foot of their husband’s bed? Sorted out the catheter? Do they know about SPC’s [suprapubic catheters]? No they don’t. Do they know about what caring really is? It’s about being with your husband or partner as it is now.
I try not to be angry but it’s very difficult not to be. I’ve lost everything I’ve got, you know. I’m too ill to go back to work. My husband can’t work. They’ve taken away everything I’ve got, these government people. Do you know I really don’t mind as long as my husband’s SPC is okay because that is vital for his survival, I really don’t mind.
Have you ever been in touch with the Bladder and Bowel Foundation?
Or heard of any other online support groups?
I don’t really do computers.
I have one which my husband kindly gave me but I don’t have the time.
Do you have friends to support you?
I can see you need support yourself.
Some people helped each other by sharing experiences online. Jennifer and some of her friends used to discuss their catheter problems via a forum that used to be on the Bladder and Bowel Foundation website. When that forum closed they communicated via Facebook, which she said was great. Every day they can share their problems about catheters but often talk to each other about other things in their lives.
Where have you found most support during this time? Family?
Yes, family, friends, and also a forum that I go on for people with bladder or bowel issues. And we’re like a complete family there. There are a lot of us and every day constantly it’s, it’s on my phone or my Facebook. So as soon as someone writes, it comes straight through.
All of us are on it. And it’s like a secret group, so no one can see. You couldn’t even search for us. You have to be invited into the group, otherwise you could never find anyone. But we always welcome people in all the time if we hear of anyone that’s got something wrong with them and they want support then we’re there.
I post quite regularly, quite a lot of us post regularly. But then I also know other people that, they don’t post but they like, they say that they like to read what’s going on with us and learn from our experiences and things and know that there are other people out there. Because they maybe might be a bit shy or things, you know.
So it’s really nice. You can have the help if you want the help, or you can just give people advice, or you can just read it. But we just don’t want people that don’t have our issues to be able to read it. Because, you know, you can get some people that say nasty things. So, but we’re like a family unit though. If anything happened to any of us we’d always, all be there for each other like a shot.
This is a Facebook group?
Yes. And there are people on it from New Zealand. There are people on it from Australia. And there are all of us from all over the whole of England. And any time someone’s locally in hospital and we’re close to that, then we’ll travel to see each other in hospitals. Or we arrange days out in London and meet up with each other and things like that. And obviously we’re always there texting and emailing on the phone. Or whenever, if someone needs, whenever someone needs support, one of us will be there, no matter what.
Age at interview:
Jennifer is a secretary. She is single. Nationality/Ethnic background: White British.
Tell me a little bit about where you have found support for all this, over the years.
Over the years, a bladder charity.
The Bladder and Bowel Foundation?
The Bladder and Bowel Foundation initially was very, very helpful. I made some really good friends through that. When their forum closed down we’d all found Facebook. Facebook had come into the world then and I got friendly with one of the girls off there who had similar problems with me, through Facebook. We then found another one that we were talking to, and it all kind of spiralled on from there. So the main information and support now is through the friends that are on there.
Obviously your family and friends are the most massive support because, when you’re in hospital, you rely on them to bring you stuff to keep you sane and you know, sneak you a MacDonald’s in when the food’s terrible, that kind of thing. I think it’s really important as well to have a supportive General Practitioner.
To go back to Facebook, how often are you in touch with people on Facebook?
We started off as people who shared bladder problems, and now we’re friends and we share activities. We have other interests and we share holiday photos, chat about other people’s holidays. And so yeah it starts off that you connect through your bladder and well actually you find that, that you don’t speak to people that much about your bladder. You might, you’ll say to them, “Oh yeah, it’s hurting me today.” Or “I’ve got to have this done.” But it’s never the main topic of conversation…
Oh that’s good. So it’s been a real support group?
Yes. And there are many, many times when I couldn’t have got through what I’ve been through in my seven years without these people because when nobody else understands, they do.
Can somebody else with a problem find you quite easily?
No. I don’t advertise it on Facebook. I have a little private group and it’s generally all the same people. I met one person that I added who I met when I was in London, and she was in the next bed to me. I found her and we’ve stayed in contact.
Support groups don’t suit everyone. Frances, for example, said she didn’t want to talk to a lot of other people with multiple sclerosis. She wanted to ‘switch off’ and talk about something completely different. Ian phoned the hospital spinal unit whenever he needed information or advice, and never felt the need to join a support group.
Some people found comfort from religion. Alok, for example, who became tetraplegic after a car accident, said that he was very spiritual. He found answers to his problems through his religion.
You mentioned that you get support from the carers and information from the internet. Have you had any religious or spiritual faith at all that has helped you? Or it hasn’t really been relevant to you? Everybody’s situation is different.
Oh the relatives are there, specifically your close ones, you know your parents. I know my wife has been my biggest inspiration because she also got an injury but she has taken care of herself and she has taken care of my daughter. I am trying to reduce as many problems from my side as possible. I rarely tell her my problems so that, you know, but she is still living alone. Although she is taking care of our daughter, there is still no one to ask and share her problems.
Have you found your religious faith at all helpful?
Yes. I am very, very spiritual. I strongly believe in God, a very strong believer of God. Very strong believer in Karma, as you can see in my room. Whenever I’ve got any problems, all the answers to those problems lie in these sheets on the wall. All these quotes are from Gita, Bhagavad Gita. And all the problems, whenever some problem comes, the answer is in there. I don’t need to go anywhere. The answer lies exactly in there.
Even now, I always say thanks to God. I always say thanks to God for showing me so many things in my life. If I had got injured a few more years ago, then I might not have got a chance to visit all the different countries and see all the things, like meeting various dignitaries, staying in five star hotels, moving here and there. So all those things that God has shown me, I’m very, very thankful to God for whatever He has given to me.
Even this [spinal cord injury], I don’t have any complaints. It’s just a part of life, and it’s a different kind of life. And I feel that I’m privileged to get this life, this kind of life too because it’s very rare that people get this kind of experience. So, in one life itself, I have lived two or three lives, you know.
Pat also said that people from her local Catholic Church had been very supportive when her husband became ill. They had visited Rob and offered to do practical things such as mowing the lawn. But Pat said asking for help could sometimes be difficult.