Life after critical illness
Information for patients (and their relatives) who have been on the intensive care unit.
This information has been written for patients and their relatives to assist with recovery from critical illness. While a patient is on the intensive care unit (ICU) and in the days following their transfer to the ward, this information is primarily aimed at relatives as the patient is unlikely to be able to concentrate, understand and apply the information themselves. By reading this information the relatives will hopefully gain an understanding of what the patient is experiencing, which will help them to be actively involved in the patient’s recovery and rehabilitation throughout their hospital admission and beyond.
The critical care rehabilitation and follow-up team (CCRFT) are available to support both the patient and their relatives throughout their entire hospital admission.
The intensive care unit (ICU)
Rehabilitation following critical illness begins as early as possible on the ICU.
You will be seen daily by a physiotherapist who will begin your rehabilitation as soon as you are well enough. The early stages may just be moving your arms and legs whilst you are still asleep to ensure you are not getting stiff and uncomfortable.
The team will try to help you out of bed as early as possible using a range of equipment available dependent on your needs. We will try to involve relatives as much as possible through the use of photographs of family and friends and finding out about who you are as a person.
We will keep a patient diary for you which your relatives will be encouraged to contribute to, this can help to put together the pieces of the puzzle, as patients often have little or no memory from their stay on the ICU.
It is very common for patients to experience delirium while on the ICU; they may be agitated, confused, scared or paranoid. Paranoia is a form of anxiety or fear that can make you believe people are plotting against you or trying to hurt you.
They may also have hallucinations (see things that aren’t really there) and nightmares that seem very real to them. Patients sometimes believe the staff are trying to hurt them.
Delirium can be very distressing for patients and their relatives but it will improve as they get better and begin to recover.
Who is involved in recovery from critical illness:
The doctors will see you several times a day to monitor your progress and make changes to your treatments.
They will work alongside the multi-professional team to establish treatment and rehabilitation plans.
The nurses play a very important role in caring for you.
When you are critically unwell, you will normally have a nurse dedicated to look after just you so they will be in the bed space with you most of the time. They will work very closely with you and as part of the multi-professional team to ensure you get the care you need. They will also liaise with your loved ones to keep them updated on your progress.
The physiotherapists will see you daily, initially treatment will help to support your breathing and, if you are being kept asleep, they will keep your arms and legs moving to stop them from getting stiff. As you improve the physiotherapists will help to start to get you moving and to help rebuild your strength. This can be a daunting process as you may find you have lost a lot of strength, but be reassured that this will improve and you will make progress. If you have a tracheostomy tube, the physiotherapist will help you to start spending time off the breathing machine and to eventually remove the tracheostomy tube.
The occupational therapists are a dedicated team that focus on your ability to do everyday tasks that are necessary and important to you. This may be done by assessing and working on your cognitive (memory, processing, concentration etc), psychological and physical condition and identifying what particular aspects of certain tasks may be difficult for you. By getting to know you as a person, they will develop meaningful rehabilitation tailored to your own specific interests and goals. They will also be able to advise on strategies and adaptations to keep you as independent as possible whilst things are still difficult.
The speech and language therapy team are a dedicated team who focus on the assessment and management of secretions, swallowing and communication impairments as well as working collaboratively with the physiotherapists on tracheostomy weaning.
The therapists are able to conduct bedside assessments as well as having access to instrumental assessments to further aid rehabilitation and decision making. You may be required to have a modified diet and/or fluids, participate in rehabilitation, or use alternative means for communication, including aids and speaking valves.
A change in the way that you eat, drink and communicate can be very daunting so the speech therapist will be there to guide you through what to expect and set goals for your rehabilitation.
Intensive care units can be stressful and the psychological effects of a distressing medical experience and living with a serious health condition can impact the person and their family for some time afterwards. This is why we have clinical psychologists to help support you through the critical care pathway and follow-up.
Clinical psychologists working in critical care support patients, family and staff to bridge the gap between physical and mental health. Clinical psychologists help manage issues related to distress, low mood, anxiety, delirium, cognitive difficulties and behavioural changes.
After leaving hospital, it is not uncommon to be troubled by anxiety, low mood, intrusive thoughts about your experience and nightmares for a few weeks. These mostly resolve with time, but for some people they may persist for longer and be very distressing. ICU clinical psychologists can provide treatment for this as part of your follow-up care.
Dietitians play a very important role in caring for critically ill patients by assessing and managing their nutritional needs. These needs can vary greatly from patient to patient, according to the treatment they’re receiving and many other factors, so the role of dietitians is crucial.
To provide the best possible care to each patient dietitians design a tailored nutritional plan, taking into account factors like height, bodyweight and any medical conditions. They’ll also work with the diverse multi-professional team to determine the most appropriate way to deliver this nutrition.
Intensive care dietitians are highly skilled and very well trained, and intensive care units could not function at such a high level without them.