FOR THOSE INTENSIVE CARE PATIENTS RECOVERING FROM COVID

Dr Lisa Hinton, Senior Research Associate, Cambridge University

Recovery after ICU
As intensive care units (ICUs) ready themselves for a tsunami of critically ill patients, and the nation learns about the vital importance of ventilators and CPAP machines, I want to write about survival and recovery. I write from experience of three weeks in ICU with community acquired pneumonia. Shared experiences which can be powerfully helpful for patients and families. There are resources, signposted below, which capture these experiences and could provide valuable support.

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.

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 too scared to go back to sleep after I had been woken up. There is the knowledge that those around you are 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 ICU nurses often offer is likely to the thin on the ground in the coming months as they deal with the current crisis.

Being in ICU and recovery is an experience like no other. It can be 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 described below were not available when I came out of ICU in 2003. When I read 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.

ICNARC funded research into the experiences of ICU patients and relatives, interviewing people around the country about their experiences.

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

https://healthtalk.org/intensive-care-patients-experiences/overview#axzz2d40pRsaX

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.

https://healthtalk.org/intensive-care-experiences-family-friends/overview

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

https://healthtalk.org/conditions-threaten-womens-lives-childbirth-pregnancy/experiences-of-intensive-care-unit-icu-or-high-dependency-units-hdu

Additional resources

Royal Berkshire Hospital ICU Support Group

www.readingicusupport.co.uk

Lisa Hinton, Trustee ICNARC


[1] Conducted by the Health Experiences Research Group in the Nuffield Department of Primary Care, University of Oxford.



Covid-19: the challenge after intensive care

As the UK’s coronavirus patients begin to leave ICU's Jacqui Thornton examines how the NHS can meet a “tsunami of need” (British Medical Journal 9th May 2020). Download pdf

Covid-19: the challenge after intensive care - A Patients Perspective

Having both been long stay patients in an intensive care unit (ICU) in the 2000's, we understand the importance of physical and psychological rehabilitation after discharge.

We were some of the lucky few that could attend a follow-up clinic (run by the Royal Berkshire Hospital), which in the long term improved our quality of life as well as, we believe, reducing our chances of needing to call on the services of the NHS. It’s difficult for us, even with our experience of ICU stays, to comprehend the trauma covid-19 patients are suffering now and will suffer in the future.

We envisage two particular challenges for these patients. First, the lack of contact and support from relatives and friends while in ICU: after discharge these can, in more usual circumstances, help fill the gaps in a patient’s memory, giving a clearer understanding of an ICU stay. Second, dealing with the visual images of staff in full personal protective equipment (dehumanising the staff, in the eyes of the patients) will add an extra dimension to the hallucinations and nightmares that are prevalent in ICU.

There may therefore be greater need for rehabilitation after a covid-19 ICU stay, and it’s vital that a support network be put in place, especially with the exceptionally high number of cases. Ex-patient and relative support groups can help with this burden in conjunction with sponsoring hospital ICUs, as the importance of interacting with others who have been through a similar experience cannot be underestimated.

It should also not be forgotten that a support structure will be needed for relatives suffering from the experience of not being there when their loved ones most needed them (this will also affect the patients)—and, in some cases, the knowledge that they were unable to comfort them in their last hours.

Matt Wiltshire, Gordon Sturmey