We are failing ICU patients by not providing the rehabilitation they need, but change is possible, says Catherine White
Critical illness and recovery are like travelling through a long tunnel. You start in an intensive care unit (ICU), often a harrowing experience in itself, but that part of the tunnel is well lit. You have a nurse with you 24 hours a day and a skilled multidisciplinary team looking after you. You move to a ward and the lights in the tunnel can start flickering. There may be little understanding of what you’ve just been through. There may be no contact with the intensive care unit and their expertise. Next, you get to go home, but you’re in the dark now. You aren’t given a map. You have no access to the multidisciplinary team. You have no information. And you don’t have access to a healthcare professional who has an in-depth understanding of what you’ve been through and what can help you.
Patients’ experiences during critical illness and in the aftermath are well documented. Receiving critical care can feel brutal: you experience delirium, confusion, distressing treatments, poor sleep, you’re unable to understand what is happening, and you often can’t communicate. Once you’re home you have to relearn how to do all the things you took for granted before—how to walk, eat, sleep, breathe again. Many people have post-intensive care syndrome and experience problems with breathlessness, eating and digestion, extreme fatigue and weakness, hair loss, significant psychological distress, impaired cognitive abilities (such as an inability to concentrate or to think clearly), and an array of other problems. These sequelae are so varied that you may not even know they are connected to your critical illness.
All this, and yet many patients do not have any support or rehabilitation once they leave hospital—a situation that would be unthinkable if it wasn’t the norm. Patients’ suffering is hidden, dispersed into communities across the country, and when you feel broken, you’re unlikely to be taking to the street with a placard demanding better.
The UK has pockets of excellence in post-hospital ICU rehabilitation, and there is great expertise and dedication from critical care multidisciplinary healthcare professionals. The stumbling block is that specialist ICU community rehabilitation is not commissioned in all areas of the UK. This may be partly down to how critical care is evaluated. The NHS England Adult Critical Care Quality Dashboard has nine domains, with only one looking at post-discharge care from ICU (and the metric chosen is readmission to critical care within 48 hours), and nothing about quality of life for people after critical illness. This dashboard seems to equate quality of care for patients with survival so there’s no imperative for commissioners to join the dots and provide specialist aftercare.
This disconnect not only leads to poor experiences for patients, it also does a disservice to intensive care units. As there is no dialogue after discharge, services have limited opportunity for reflection and improvement based on in-depth patient feedback and longer term patient outcomes.
On 21 April 2021 ICUsteps established the first National ICU Rehabilitation Day and launched the #RehabIsCritical campaign with a parliamentary petition. An open letter was signed by 10 key organisations urging health secretary Matt Hancock to provide community rehabilitation for all ICU patients. A recent Editorial in The BMJ provided the analysis, assessing the current provision of post-hospital rehabilitation for patients in ICU.
There is still much to be done to determine the most efficacious rehabilitation for patients after they’ve been discharged from ICU, but I believe there is consensus on some essential components. For example, comprehensive information for patients and their relatives is needed, along with an individualised rehabilitation plan with follow-up appointments with healthcare professionals who have an in-depth knowledge of post-intensive care syndrome. Specialist multidisciplinary services that patients can access when they need them, including physical, psychological, and cognitive support, could be a lifeline. Greater awareness of the sequelae of critical illness is also urgently needed in primary care.
Overall, we need a holistic approach, one that looks at the individual as a whole person, and which sees integrated primary and secondary care services working together. We need to ask what is important to that person in their recovery and how they can be supported to achieve it. And we need everywhere in the UK to start using patient centred metrics for critical care that stretch well beyond hospital discharge.
When I was discharged from hospital after a critical illness, I didn’t receive any rehabilitation, information, or specialist healthcare professional support. I couldn’t have imagined beforehand that it was possible to suffer so much, on every level, during my 18 month recovery. And I didn’t know how to help my own recovery. This was over a decade ago, yet many people have similar experiences now. It may be that there hasn’t been systematic change because the scale of the problem and suffering is hidden from view. No one is routinely asking all patients how they are post-critical care and monitoring patient outcomes.
We are currently failing in our duty of care to ICU patients by not providing the rehabilitation they need, but I hope our #RehabIsCritical campaign will be the beginning of change. This is a powerful collaboration between patients, relatives, and healthcare professionals all calling for people to be supported back to lives they value.
For more information about the #RehabIsCritical campaign visit www.icusteps.org/rehab
Catherine White is volunteer information manager and trustee for the intensive care patient and relative support charity ICUsteps. She has other health related roles, representing the interests of patients. Twitter @cswhite100
Competing interests: CW is volunteer information manager and trustee for the intensive care patient and relative support charity ICUsteps.