About Us
ICUsteps is a charity run by former intensive care patients and relatives that aims to improve the care and support available to patients recovering from critical illness and their carers during their long recovery.
Everyone knows that intensive care units are for treating patients with life threatening illnesses or injuries. It can be a frightening place for relatives and for patients who have been critically ill. Not everyone knows that as well as the physical recovery from a serious illness, the psychological recovery for both patient and family can also take a long time with recovery taking up to a year or even longer. Often people find it difficult to come to terms with the experience. Sharing experiences with people who have already been through similar experiences can play an important part in the recovery process. Former patients and their family members are very often the best people to talk to. They know and understand what you're going through because they've been there too. As we say, empathy, not sympathy.
A bed in intensive care is only given to those in the most serious condition and the work undertaken by the staff in those units makes a crucial difference to a patient's chances of survival. Severe steps are often required to save the patient's life and many of them can be invasive and unpleasant but all are necessary. Through this time when the outcome is far from certain during which the relatives can only sit, wait, hope and pray, the patient is often unaware of what is going on around them. Between sedation and medication for pain management, memories are often patchy at best or even non-existent. Given what the patient is going through, this can be for the best. Once they are no longer in need of such urgent attention, they are normally transferred from ICU to a general ward, still not fully aware of what has happened to them. The treatment in ICU saves lives, but as well as their physical recovery, patients may have to cope with hallucinatory memories where dreams, nightmares and reality are mixed together in such a way as they cannot be distinguished or no memory at all. Often they are unaware of just how ill they have been or why they are so weak.
When they return home, the patient's recovery is only just beginning. ICUsteps wants to see aftercare following critical illness improved so that all patients have the information, help and support they need during their rehabilitation. Recovery from critical illness is a long and difficult process but it shouldn't be made any harder than it has to be.
Recent activities
ICUsteps was established in 2003 and became a registered charity in 2006. As part of our aim to improve patient support and highlight that recovery from critical illness does not end on discharge from hospital we have been active in a number of areas. As well as continuing to hold our drop-in sessions, we've participated in the development of NICE guidelines for acutely ill patients in hospital and critical illness rehabilitation.
We've presented to the annual conference of the British Association of Critical Care Nurses on the development and setting up of an intensive care patient and relative support group and have written a paper on the same topic which has been accepted for publication in the medical press. In August 2007 we launched "Intensive Care - A guide for patients and relatives", an information booklet for patients and their relatives covering all stages of critical illess from admission through to rehabilitation which we're making available to all ICUs in the country for no cost. Having seen first hand the benefits that come from being able to talk to other people who understand what you've been through, we're keen to help support groups form in other parts of the country and welcome enquiries from anyone who would like to.
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