Living with a urinary catheter

Sources of support

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.
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.
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.
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.
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.
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.
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.
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.
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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.
 
Practical support mattered to some of the people we interviewed, who said they paid to have help with cleaning and gardening. Several had family or friends who could help with shopping and household chores (see ‘Informal care: caring for a relative with a long-term catheter’).


Last reviewed June 2015.

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