ICUsteps was founded in 2005 by former intensive care patients, relatives and medical staff in recognition of the need to provide on-going support after discharge for patients who have been critically ill. This began by establishing six-weekly drop-in meetings where recent patients could come and talk to others who were further down their recovery journey, to let them know they’re not alone in what they feel and think and that more often than not, what they’ve experienced is normal for someone who’s been through a period of critical illness. Since those first meetings, ICUsteps have evangelised the need for patient support through presentations and the publication of their article ‘Developing and setting up a patient and relatives intensive care support group’ in the January 2009 edition of Nursing in Critical Care.
Interest as a result of the article and presentations have led to ICUsteps groups being set up in London, Liverpool and Bristol with further groups in the early stages of forming.
Due to a lack of comprehensive patient and relative information, in 2008 they developed “Intensive Care: a guide for patients and relatives”. This 34 page booklet, written by patients and relatives with the input of senior intensive care professionals has since been ordered by half of the UK’s intensive care units with over 55,000 copies shipped to date.
With the need for patient information and support formally recognised through NICE guideline CG83 and with an ICUsteps trustee having served as a patient representative on that guideline’s development group, they continue to promote the need and help others on their long recovery from critical illness providing empathy, not sympathy.