Having a relative, partner or close friend in an intensive care unit (ICU)is often a sudden and unexpected event. When the patient was first admitted to ICU, as well as having to deal with the shock and distress of the situation, most people also had to make practical arrangements to enable them to be at the hospital all day, including taking time off work. Many had also taken time off work, at least for a while, when the patient was first discharged from hospital and had needed a lot of care and support at home.

Here people talk about the effects on their work and finances when a relative, partner or close friend had been critically ill in ICU.

In order to visit the patient in ICU, sometimes all day, every day, many people said they’d had to take time off work. Some said employers had been ‘fantastic’, one woman saying she’d been allowed four weeks compassionate leave. One man said his employers had been extremely supportive and he’d been on full pay for four months while his wife was ill. He later accepted a redundancy offer so he could care for her full-time for several years. Many others had been pleased with the support they’d received from employers and colleagues when the crisis had happened. Some people said they’d been self-employed and could take as much time off as they’d needed, though of course this meant not having any income during this time.

Many people said that it had been impossible to continue working when the patient was ill in ICU. They felt they’d needed to be at the bedside and, under the stress of the situation, wouldn’t have been able to concentrate at work. One woman lived some distance from where her sister lived so took two afternoons a week off work to visit her in hospital. In the meantime, other relatives were visiting her every day.

When the patient started showing signs of improvement or recovering some relatives returned to work part-time, often because they’d needed to take their minds off the critical illness.

Most people had also taken time off work, at least for a while, when the patient first came back home and needed a lot of care and support. Some said that employers had, again, been understanding and supportive, though a few said they’d felt pressured to return to work as time went on. Several said they returned to work part-time at first, and phoned home regularly to check the ill person had been managing without them. One woman said she had a ‘phased return’ to work after her husband died in ICU, and now also had several financial matters to take care of.

Some people talked about the pros and cons of being self-employed. Several said that they’d often worried about the fact that they weren’t earning but they had been able to take off as much time as they’d needed. A few said that stopping work while their relative was been ill had huge financial implications and they’d lost money.

Some people returned to their normal work routines because, although the ill person was still weak and recovering, they’d been able to manage alone. Several said they’d found it difficult to concentrate when they first went back to work but soon resumed work as normal. A few said the ICU experience had made them re-evaluate their lives and they now wanted to work less or in less stressful jobs or environments.

Some people said that it was only after the ICU experience that they realised how expensive it had been for them to visit ICU every day.

Some people had been retired and said the critical illness hadn’t affected their lives in terms of work or finances. Others, who had been working, had to return to work because of financial constraints. One man had to pay for his wife to have private physiotherapy care and eventually took a part-time job because the private care had been so expensive. A few others also said they’d used some of their savings on private treatment. They though it had been ‘money well spent’ but that it wouldn’t have been necessary had there been more support for ICU patients once they were back home again.

A few people said they’d had to give up work because the ill person’s health had deteriorated so much after critical illness that they had to care for them full-time.

Many people said they were unsure what benefits the ill person or they, as a carer, were entitled to claim. Some felt they’d been given very little help or support in terms of claiming benefits.

Two women said that, because their partners had had brain injuries, their memories had been affected and they now took care of all financial matters.