Living with a urinary catheter

Perceptions of health professionals and health care

Here people we interviewed talk about consultations they had had with their urologists and about interactions with general practitioners (GPs), hospital nurses, district nurses, clinical nurse specialists and continence advisors. Iain felt that communication with members of the urology team had much improved over the years. Others also recalled good communication with medical staff but some described less positive experiences.
Jennifer has Fowler’s syndrome. She got better treatment when she travelled for nearly an hour to a hospital with a special urology department than at her local hospital. She said that good doctors are those who listen to her. Faye had always felt rushed in the out-patient department, but when she was in the ward her consultant gave her more time.
 
Annie, paralysed after a horse riding accident in 2002, felt that her local spinal unit was short staffed. Others also complained that wards were often short staffed. Alex, with multiple sclerosis, was alarmed when some health professionals in hospital wanted to treat her without washing their hands first. However, some spoke highly of their care in hospital, particularly in specialist spinal units.
After leaving hospital, people often went back as an out-patient, either to see a specialist about a specific condition (e.g. multiple sclerosis) or to see a urologist about urinary problems. Annie thought her ‘follow-up’ care hadn’t been very good. Perhaps medical staff felt that her husband, who was a doctor, was managing her condition. Carol, who had endometriosis that had invaded her bladder, was glad she could contact her consultants by email. It is important that people can contact the doctors who understand their condition. Electronic communication had made life easier.
 
Once home, people also relied on others for catheter care. They got help from family members, carers, district nurses, continence advisors, and their GP (see ‘Sources of Support’). Some people praised their GP. Rob, for example, said that his GP was ‘knowledgeable’. However, others said GPs needed more training in catheter care, particularly of suprapubic catheters.
Compared with GPs, district nurses spend more of their time changing catheters (see ‘Catheter changes’). Rob’s district nurse was ‘very skilful’. He said, ‘quite clearly, the poor lady, she changes them daily, she’s very practiced at it.’ Several others also spoke positively about their district nurses. For Iain his local team was ‘fantastic’ and ‘always available 24 hours a day’. Ann said ‘you cannot overrate the kindness that the district nurse can give and it makes an incredible difference to the patient’.
 
However, Faye had had ‘trouble with district nurses’, saying that if she asked one to change her catheter, she was often told that they were too busy and didn’t have enough staff. They advised her to go to Accident & Emergency instead. Martin, who had a urethral catheter, also complained that some district nurses ‘really hadn’t got a clue about putting catheters in’. He’d had a problem 3 times when a catheter hadn’t been inserted properly and had ended up in hospital as a result. He said that nurses should listen to the patient. Others explained why they thought some district nurses were better than others.
Some people preferred to have their catheters changed by the same few district nurses to having a different nurse every time. Vicky found it ‘less problematic’ when the same few nurses changed her catheter. Like Frances, changing her suprapubic catheter was sometimes difficult; occasionally her catheter changes were used to train other district nurses.
Ian got useful advice from a clinical nurse specialist who visited him at home. She discussed catheter maintenance and suggested reducing his use of bladder washouts. Faye found her continence nurse from the local hospital very helpful. This nurse didn’t change Faye’s catheter but helped her deal with emotional issues. She also supported her when she went to see her urologist.
The people we interviewed had messages for health professionals, including:
  • Pass on information, and don’t talk in jargon.
  • Don’t assume people know much about catheters even if they have a medical training.
  • Find out about the many different types of catheter and bags available.
  • Tell patients about the various products available and discuss different types of bag or catheter so that they know they have a choice.
  • Make sure the person with the catheter knows how to secure the catheter and use the valve correctly.
  • Treat people as human beings and listen to them.
  • Treat people with a catheter as ‘normal’ people, not as ‘invalids’.
  • Provide regular check-ups to prevent acute problems.
  • Make sure the catheter user knows who is responsible for managing the catheter – the GP or hospital consultant.
  • Understand that sex may still matter to the person with the catheter and that having a catheter can really affect it (see ‘Sex and intimate relationships’.)
  • Try to empathise and understand what it is like to live with a catheter.
  • Before changing a catheter, make sure the person is comfortable.
  • Follow guidelines about replacing catheters. Have extra training if necessary.

Also see ‘Having a professional carer’.  

Last reviewed June 2015.

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