Barbara Egan shares her experience of ICU and a pathway to recovery
Barbara is a PPI with NOCA’s Irish National ICU Audit. In the below video Barbara provides her experience of ICU, her pathway to recovery and her work within NOCA and the development of the ICU Audit . Barbara also works with the great organisation ICU Steps, a group set up to provide support to patients and relatives affected by critical illness and helps to promote a positive outlook in recovery.
Shaun’s story: ‘ICU - But not as we know it!’
Shaun at 19 years of age was involved in a road traffic accident in 2013. Following a long stay in ICU, he is now living at home and completing a full-time university course. This is his story, as told by himself and his mum, Gretta.
Shaun was driving home from work on a Saturday evening when the road traffic accident happened. He sustained a spinal cord injury and was admitted to his local hospital. Shaun’s care involved extensive stays across three hospitals, in acute care, specialist care, and rehabilitation in a UK hospital.
Finally, Shaun was discharged home from his local hospital with support for activities of daily living as part of a home care package. During Shaun’s hospital stay there were some good times that brought joy and hope as well as not so good times that brought despair and hopelessness. One example of a good time came as an unexpected consequence. The cuff on Shaun’s trachea leaked air and in tolerating this he was able to talk. When his voice was heard and his safety assured, Gretta says “that was a huge step forward for us, I cried with joy after that. I thought there’s no stopping us now”. As with any illness, there were not so good times also.
Shaun’s pain medication was incorrectly charted on transfer from one area of care to another. This caused fear, despair and hopelessness. Gretta remembers: “He was asking us to turn off the ventilation because he couldn’t stand the pain anymore.” Once this was resolved, things settled down again. The transfers between units and hospitals was traumatic for everyone, but they built a trusting relationship with new staff each time. According to Gretta, “you build a relationship on a ward with those staff, then you’re going on to a strange ward with new people. That’s kind of tough”. Shaun and Gretta describe the changes to themselves and family. They describe changes in the structure of the family unit, finding strength and “getting tough fast” in order to deal with their situation. Gretta says “you take on a whole new persona, you are a different person”.
A home care plan and package was made for Shaun, so that he could live at home. He now lives in his ICU at home. Many themes exist within this story. Three main themes are highlighted here as relevant to ICU care and to this report. These are access to care, patient-centred care, and psychological care for the family during the ICU stay.