There is often “little or no support” provided when patients whose lives have been saved by intensive care leave hospital, according to a study.
Almost three quarters of patients in the study reported moderate or severe pain at six and 12 months after leaving intensive care, and the vast majority depend on their family to provide care.
Although some help is offered by GPs and community-based nurses, many people have to change their lives radically to help, the research suggests.
The study - carried out by researchers from Imperial College London and the University of Oxford and published in the Critical Care journal - found that for a significant number of patients, both physical and mental problems were identified alongside the need for continuing care.
Of the 293 patients questioned, a quarter of them found themselves dependent on help with daily living needs at six months, with this reducing only slightly at after 12 months.
The study found the vast majority of care - 80% - was being provided by family members, with more than half of families having to make adjustments to their own working lives to offer care.
A third of the patients questioned said they had lost their jobs, retired early, were working part-time, or were on sick leave after six months.
Of the patients who returned to work, a significant number of them reported a drop in income or working hours.
Barry Williams, of the Intensive Care Society (ICS) critical care patient liaison committee, said: “There is often little or no support for these people once discharged from hospital.”
He urged the Department of Health and the Department for Work and Pensions to work with the ICS to “produce a policy to deal with the problems documented by a well designed and properly conducted survey”.
Dr Stephen Brett, chairman of the Intensive Care Foundation and one of the study’s researchers, said there needs to be a “better approach to coordinating care” and a “recognition that people’s pathway to recovery often crosses organisational boundaries”.
Health Minister Dr Dan Poulter said: “A patient’s discharge from hospital does not mark the end of care available to them.
“We are committed to ensuring that patients who need ongoing support can live as independent a life as possible by putting them in charge of their care, through the use of personalised care plans and budgets.
“We recognise the invaluable role played by friends and family members in providing care - they make a huge contribution to society and we want to do all we can to support them.
“Under the new Care Bill, we are proposing to give carers the same legal right to support as the people they look after.
“We always carefully evaluate studies, and will look at this one with interest.”
The patients who took part in the study were from a variety of age groups and have all spent more than two days in intensive care in hospitals around the UK.
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