• 23rd March 2021
  • 4 min read

Recovery after intensive care

At a time when intensive care units have faced a tsunami of critically ill patients, Lisa Hinton introduces a new project and discusses how shared experiences can help patients and families.

Intensive care units (ICUs) have faced a tsunami of critically ill patients during the pandemic. I want to talk about survival and recovery, drawing on my own experience in ICU with community acquired pneumonia and sepsis. Shared experiences can be powerfully helpful for patients and families.

There are existing resources, signposted at the bottom of this post, which capture these experiences and could provide valuable support. THIS Institute’s new project focused on learning from COVID 19 intensive care patient experiences will collect the stories of family members, generate learning to improve patient experiences in the future and deliver a new COVID-19 specific resource soon.

Being a patient in intensive care is a frightening experience, unlike any you are likely to have had in hospital before. Many are traumatised and haunted by the experience. An ICU is noisy. Machines whirr and bleep constantly, their traces, recording your vital signs, become hypnotic. Staff, although muted, need to talk and move around as they provide care. An ICU is also profoundly disorientating. While sedated, one can lose days or weeks. The constant light removes all sense of day and night.

I was sedated for over 10 days, and then too scared to go back to sleep after I had been woken up.

Once conscious you often are too ill to move, talk or do anything for yourself. You may feel profoundly frustrated and powerless. Then there is the sleeplessness. I was sedated for over 10 days, and then too scared to go back to sleep after I had been woken up. There is the knowledge that those around you are suffering and dying

The experience of ICU doesn’t end once you’ve been discharged onto a general ward, or home. For me, those weeks and months felt like the aftermath of an earthquake as I came to terms with how ill I had been and began the long and slow path to recovery. There is the physical recovery from a critical illness. It can, and probably will, take many months to feel strong again. Then there is the psychological recovery. Many experience nightmares and sleeplessness once they are home. Some develop PTSD. While there is more understanding and recognition of these effects now, the follow up that stretched ICU nurses routinely offer is likely to the thin on the ground as they deal with the pandemic.

it can be profoundly isolating when those around you have no sense of what you have been through.

Being in ICU and recovery is an experience like no other. In addition to the physical and psychological impacts, it can be profoundly isolating when those around you have no sense of what you have been through. Reading about the experiences of others can be a source of support. The Healthtalk resources available on experiences of ICU patients, family and friends, and mothers who have needed ICU care after childbirth were not available when I came out of ICU. When I read and watched them, I was blown away by their power and heartened to discover I was not alone in finding recovery hard. Here finally were the voices of other people who had been to the same strange place as me, and recovered.

These shared experiences can also help relatives and friends prepare themselves and think about how they respond and support their loved ones. We hope our project will offer further support to patients and their families through Healthtalk and explore how patient accounts can be used to co-design improved care and service models.

Resources for support

Patients

You can read about the experiences of 40 other ICU patients on Healthtalk.

Family and friends

Healthtalk also has a resource for family and friends where you can read about the experiences of 38 relatives of an intensive care patient.

After childbirth

There are also experiences of mothers who have needed ICU care after childbirth.

The Intensive Care National Audit and Research Centre (ICNARC) funded research, (conducted by the Health Experiences Research Group in the Nuffield Department of Primary Care, University of Oxford), into the experiences of ICU patients and relatives, interviewing people around the country about their experiences. A version of this article was published on their website in April 2020. Additional resources can be found at ICU Steps. Lisa Hinton is a Trustee of ICNARC.