Living with a urinary catheter

Having a professional carer

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 NHS Primary Care Trust (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.

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.

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.

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.

Michelle has a full time carer. She had a spinal cord injury when she was 16 years old. Her carer is funded by a number of sources, including The Independent Living Fund (ILF). This fund provides money to help disabled people live independently in the community rather than in residential care. The fund pays cash directly to disabled people so they can buy care from an agency or pay the wages of a privately employed Personal Assistant (PA) (though not relatives living in the same house).The ILF works in partnership with over 200 local authorities to jointly fund individually tailored care and support packages for disabled people. In December 2010, the ILF was permanently closed to new applications, but the official priority remained to deliver an excellent service to users (see Department of Work and Pensions) but, “Due to changes within the adult care system, the Independent Living Fund (ILF) will be closing on 30 June 2015. From 1 July 2015, the funding and responsibility of ILF care and support needs will transfer to local authorities in England and the devolved administrations in Scotland, Wales and Northern Ireland.” GOV.UK June 2015.
 
How this change will effect current users is not known yet.

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.

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.

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 June 2015.
Last updated June 2015.

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