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Introduction

This information has been written for patients and their relatives to assist with recovery from critical illness.

Whilst 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 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 contact details for the team can be found on the second page of this booklet.

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 need. 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 piece together the pieces of the puzzle as patients often have little or no memory from their stay on the ICU.

Delirium on ICU

It is very common for patients to experience delirium whilst 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:

  • Doctors: 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.
  • Nurses: 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 bedspace 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.
  • Physiotherapists: 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.
  • Occupational Therapists: 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.
  • Speech and Language Therapists: The speech and language therapy team are a dedicated team that 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 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.
  • Clinical Psychologists: 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.

Leaving the intensive care unit 

When you are medically and physically well enough you will be moved from the ICU to a ward setting. Some patients will go to the Medical Acute Dependency Unit (MADU) or the Surgical Acute Dependency Unit (SADU) (both high dependency areas) before going to the ward.

It is normal to feel apprehensive about stepping down to a ward but it is a sign that you are getting better. The staff on the ward are used to looking after patients who have been seriously ill and are aware that it can be difficult being looked after by someone new.

You will notice that on the ward the nurses will be looking after more patients than on the ICU so it can take longer for nurses to respond to your needs. Even if you cannot see the nurses all the time, they are still nearby. You will have a call bell to use if you need any help, which the nurses will answer as quickly as they can. It is also likely that you will be in a bay with up to 5 other patients.

The critical care outreach team will visit you on the ward within the first 24 hours after your move from the ICU. They will work with the ward staff to monitor your physical recovery.

The CCRFT will aim to visit within the first 3 days to discuss your progress and any issues you or your relatives may have regarding your physical and psychological recovery.

If you feel concerned that the healthcare team has not recognised your loved one’s change in condition you can contact Call 4 Concern. This is a patient safety service for patients and families:

CCRFT on the ward

The CCRFT will come and visit you on the ward. We aim to see our patients 1-2 x per week and who you see will be based on your main problems. This service is in addition to everything you will receive on the ward, for example, the physiotherapists can provide additional physiotherapy and will not take the place of the ward physiotherapy. The CCRFT is aiming to support your entire recovery. 

Examples of what the CCRFT will do with you include:
•    Additional rehabilitation (including physical and cognitive)
•    Outside visits
•    Discussing your ICU ‘Roadmap’
•    Providing you with your ICU patient diary
•    Psychological support
•    Supporting personal care
This is all to work towards your personal goals which the team will discuss with you.

Leaving the hospital

It is normal to find the idea of being discharged home daunting but also exciting. This is a big step forwards in your recovery, but it will take some time to get back to a normal life. Many people report that this is when they feel their recovery really begins.

When you leave hospital

When you’re well enough to leave hospital you may have an assessment to find any difficulties you might face when you get home. This would include psychological or emotional problems as well as any care and equipment you need.

Your healthcare team should discuss and agree with you what your rehabilitation goals are (what you want to achieve as you get better) and organise any referrals and any other care or rehabilitation you will need before you leave the hospital.

When you leave hospital you may be given:

•    A letter that summarises your time and treatment in ICU (ICU discharge summary)
•    The contact details for the CCRFT
•    If appropriate, a copy of your rehabilitation plan

When you get home

You won’t have the same support that you had in hospital and it can be a difficult time for you and your family. It is normal to feel low in mood or frustrated at times as you realise how far off your previous level of function you are. Setting small goals in your daily routine can help you recover gradually and show you that you are improving. A small goal could be as simple as making a drink for yourself. Don’t push yourself too hard as this can end up making recovery take longer.

If you have had an operation you must follow your surgeon’s advice. Your body will tell you if it’s getting tired or is in pain. If you feel unwell or get out of breath, stop what you’re doing and rest.

Checking up on your recovery

The CCRFT will continue to support you on discharge. They will contact you by telephone in the first couple of weeks and will book you to come to our ICU follow up clinic, usually 2-3 months after you have been discharged home.

The team will continue to stay in contact with you if you have any ongoing issues or concerns. At the ICU follow up clinic, you will go through a few assessments to highlight if you have any ongoing issues and we will be able to talk to you about your ICU admission and answer any questions you may have.

We may offer for you to come back to visit the ICU to look around and see some of the staff who looked after you. This can help you to understand what happened to you. It can be useful to come to the ICU follow up clinic with a relative for additional support.

If a diary has been kept for you by the staff, your relatives and visitors you may be given this back at the ICU follow up clinic (or on the ward before you are discharged home). Reading this can help you understand what happened.

It may take a while before your feel ready to read it, and it can be very emotional. If it helps, take the time to understand the medical side of what happened to you. Staff at the ICU follow up clinic will be able to help with this or you can ask your GP about it.

Who can I ask for help?

When you’re back at home, your GP will be involved in your general care and recovery. They should be able to refer you to other services if you need them, such as community-based physiotherapy.

If your GP isn’t able to help you, you can always contact the CCRFT. Our contact details can be found at the front of this leaflet.

Social life and hobbies

When you have been seriously ill, you may feel differently about things and you may not want to do things you used to enjoy. For example, you may not feel like seeing lots of people at once, so start by seeing one or two friends at a time for short periods.

You may find it difficult to concentrate and may even find it hard to follow a TV programme. Your concentration will get better. During your recovery you may be forgetful but your memory should gradually improve.

Relationships and family

After you have been critically ill, you and the people around you may seem to change. Your family may make a fuss and might not understand why you seem different, or why you aren’t keen on the hobbies and interests you used to enjoy.

Your family and friends were afraid you might die, so they may want to do everything for you when you get home. If you are finding this frustrating try talking with them calmly about how you feel. Try not to bottle things up and get angry.

Getting back to your daily routine

Lots of people worry about coming home from hospital or returning to work after critical illness. It’s normal to wonder whether you’ll be able to cope.

Talk about it with your family and think about how you can adapt things at home to help you. Recovery takes time and you won’t be able to do everything you used to straight away. Ask friends and family for help if you need it until you’re strong enough to do things for yourself.

If you used to work, you may not be well enough to return to full-time work straight away. When you’re feeling better, it’s a good idea to arrange to go back and see your colleagues and talk to your manager. Depending on your job you may be able to do a phased return.

If you have young children you may feel under even greater pressure to get back to normal. Do the important things first – other jobs can wait. Don’t be afraid to ask your friends and family for help.

Sexual relationships following critical illness

It’s normal to be worried about when it’s safe to start having sex again. Your partner is likely to be worried too. It is important to talk about how you feel.

You may be concerned about the following:

  • Will my scars be healed enough?
  • If I have to use a medical device, such as a colostomy bag, catheter or pacemaker, will it get in the way?
  • Will I hurt or ache too much?
  • Will I have the strength?
  • What if my partner doesn’t want to have sex?
  • What if I can’t continue or can’t reach an orgasm?

You may worry because you don’t know what will happen. If you’re worried about your strength, compare the energy needed for sex with the energy you need for your exercises. If you’re coping well with your exercises, you may be able to cope with sex. Take things slowly and see what happens.

Sometimes, medical problems such as impotence (being unable to get and keep an erection) can affect your sex life. If you’re worried then talk to your GP.

How can critical illness affect your body?

Unfortunately, critical illness can lead to significant long-term complications. These complications are generally worse in patients who have had a long and serious illness. 
You may come across the term ‘Post Intensive Care Syndrome’ or ‘PICS,’ something that may impact both intensive care survivors and their families. The three main features of PICS are:
1.    Physical effects
2.    Brain effects 
3.    Psychological problems

Physical effects

Weakness and weight loss
You are likely to feel tired and weak at first. Your muscles will have lost strength whilst you were unwell, the longer you were ill for the more your muscles will have weakened. This muscle loss happens faster for patients who have been on breathing machines.

You may also have lost weight because of this muscle loss. You will start to put on weight again as you get better and exercise. You will get stronger but this takes time and it is important to gradually build up what you are able to do. Physical recovery may take up to 18 months for you to feel fully better. Whilst you are in hospital the physiotherapist will help you to set realistic goals. Keeping a diary that you can read at times when you don’t feel so well can make you realise how much progress you are making. 

Even if you don’t make a full recovery, you can still achieve a lot and live a full life. There are people who have been critically ill for months, and a year later you’d never know what they’d been through. Try to stay positive, even if means making some changes to your life.

Breathing

You may have need a tracheostomy whilst you were unwell. This is procedure to make a hole in your throat and insert a tube, which is connected to a breathing machine (ventilator). This tracheostomy makes it easier for you to breathe and helps with weaning off the ventilator. If you had one of these you will have a small scar on your neck where the tube was inserted. This scar will gradually fade and become less obvious.

If you have been on a ventilator, your breathing muscles will have become weaker, just like the rest of your muscles. The physiotherapists will show you breathing exercises to help increase your strength again. It is very common for people to feel more breathless easily, even with very minimal exercise. As with the rest of your strength and fitness, this will improve as you gradually increase what you are doing.

Your voice

If you have been on a ventilator your voice may have changed. At first it is likely that your throat may be sore. To relax as much as you can when you speak and drink plenty of water if you are able to swallow safely (the nurses and speech and language therapists will have checked this). You may also have a dry mouth caused by a lack of saliva.

Your skin and hair

Your skin may be itchy after your illness. Moisturising it regularly can help stop this. You may notice changes to your hair and some of it may fall out. This is not unusual and can even happen months after you leave hospital. It usually grows back but it may be more curly, straight or thin or a different colour from how it was before. Taking a selenium supplement and eating a balanced diet can help with hair growth.

Changes to your hearing, taste, touch and sense of smell

Your senses may be affected by your stay in the ICU but the effects don’t usually last very long; however, this can be upsetting. Some of the drugs you may have to take can affect your hearing. Other types of drugs can leave a metallic taste in your mouth. You may have been fed through a tube into your stomach, or by a drip into your veins. When you begin to eat and drink normally again, food may taste stronger or just different. Your sense of smell may also be affected because it is closely linked to your sense of taste. You may also have sore, dry eyes because you were sedated for a long time, or your eyes may be puffy and swollen because of the fluids you were given to keep you hydrated. Things that touch your skin may feel odd and you may experience tingling in parts of your body. This can be caused by some of the drugs you were given or by your body’s reaction to your illness. These changes are usually temporary and should disappear over time.

Problems going to the toilet

When you were in the ICU you may have had a tube going into your bladder called a urinary catheter. This drains urine from your bladder and allows the staff to check your fluid levels. When the tube is taken out, your muscles may be weaker so you may find it difficult to control your bladder. Don’t worry, this usually returns to normal, but you can ask your medical team for exercises that may help in the meantime.

If you have problems passing urine, you may have an infection, so see your doctor or a nurse as soon as possible.

Symptoms include:
•    Not being able to pass urine for several hours
•    Having a burning pain when urinating
•    Blood in your urine

Sometimes medication an affect the amount and colour of your urine. It may even affect how often you go to the toilet. The medication may also affect your bowel movements. If you’re worried about any of these things, talk to your doctor about them.

Psychological and cognitive effects

Emotional recovery

After being critically ill, it may take up to 18 months for you to fully recover. Being weak and having to put a lot of effort into doing simple things, for example getting dressed, can make you feel low in mood. You may also feel like you have lost your independence if you need a lot of help at this early stage.

Your mood may change often and you may feel:
•    Upset and tearful
•    Tired or not able to sleep properly
•    Lack of interest in your appearance
•    Quick tempered and snappy
•    Guilty for causing worry for your friends and family
•    Lack of appetite
•    Lack of understanding of what has happened to you and how ill you were
•    Scared that you almost died
•    Worry about getting ill again and how long it’s taking to recover

These feelings usually settle with time as you get back into your usual rhythms and routines at home. Your family and friends will be pleased to have you home, but they may not understand your feelings or why you are acting differently; try to talk with them about how you feel. 

After the ICU you may experience some of the following symptoms which might be triggered by a sound, smell, or something you see:
•    Intense, vivid dreams or nightmares that feel very real
•    Disturbing, sudden, vivid memories of events in the past (flashbacks)
•    Hallucinations, this is when you see or hear things that are not there
•    Feeling much more worried, nervous, or anxious about things than usual
•    Feeling tearful or depressed, or having deep feelings of hopelessness
•    Not enjoying the things that you usually do or lacking energy or interest in life

These symptoms usually disappear over time, however if they continue or if you are concerned, please do not hesitate to contact the CCRFT.

Sleep

You need regular sleep to help your recovery. It can take time to get back into a normal sleep routine. You may find it harder to fall asleep, or you may wake more often during the night. Consider these tips to try to help with your sleep routine:

  • Try to avoid tea and coffee in the afternoon as the caffeine can keep you awake. Consider: warm milky drinks, herbal or de-caffeinated options instead.
  • Try to avoid eating a heavy meal or consuming alcohol or nicotine in the evenings. Consider having a warm bath, lavender scents are helpful with relaxation 
  • Try to avoid blue light – television or mobilise phones before bed. Consider: reading, relaxation or listening to the radio before you go to sleep may also help. If you do need to look at devices in the evening, consider blue light filter glasses which are available on the internet. 
  • If you are worrying or having lots of thoughts going round in your head, try writing them all down on a notepad.
  • If you find you are wide awake in bed after 20 minutes, try getting out of bed and moving to a different place to try something relaxing for a while until you start to feel sleepy, and then return to bed. 
  • It is helpful to stick to a regular routine as far as you are able to.
  • Your GP can give you advice is you have trouble sleeping, but things should return to normal as you become stronger and more active.

Fatigue

It is common for people to feel extremely fatigued following time in the ICU and it will take some time for you to be able to get back to doing your normal activities. The transition from hospital to home is likely to be exhausting, and it is important not to try to rush back to doing everything at once.

Start by allowing yourself a few days to settle in, and then try to. choose a task at a time to start getting back to. For example, you may decide you will cook a meal, but, if possible, avoid trying to do all the housework and cooking on the same day initially. You may then decide to do meals and laundry after a few days etc. We know this is not always possible, so try to consider these tips and adjust them to suit you. When you suffer with fatigue, it is important to plan and pace.

Consider using a weekly timetable to list out all the activities you need to do. Try to spread the tasks throughout the week, so you do not have days with lots of tasks and days which are completely free. Try to plan the tasks at different times of day so that you have time to rest.

When you feel you are having a good day regarding fatigue levels, try not to overdo your activities, as this may cause extreme fatigue the following day. This is known as a “boom – bust” cycle. Instead, try to have an even spread of activity and plan frequent rests to “re-charge your battery,” even when you may feel you have more energy.

Consider splitting activities into parts – e.g., if cooking a family meal, you may be able to prepare some ingredients in the morning, rest and then return later to continue cooking later in the day. It can be useful to keep a diary, and rate on a 0-10 scale how fatigued you feel at certain times of the day, to help with your planning, but also to track your progress.

Understanding what has happened to you

People feel differently about their time in the ICU. For some the experience is no more worrying than any other stay in hospital. Some have no clear memory of it, or they may try to forget it. For others, being so ill can be a very traumatic experience and it may take time for them to come to terms with it afterwards. 

In a few cases, patients (and their relatives) can have extreme symptoms of stress after their treatment in the ICU. This is known as post-traumatic stress disorder (PTSD) and is rare. Most people who have suffered from PTSD found that talking to a professional counsellor about their stay in hospital helps and it can be effectively treated though Cognitive Behavioral Therapy (CBT) or Eye Movement Desensitization and Reprocessing (EMDR) therapy by a professional psychological therapist.

You can contact the CCRF service psychologist if you feel you are suffering from ongoing distress regarding your ICU stay or alternatively you can ask your GP to refer you for counselling.

Hallucinations and paranoia

The strong drugs and treatment you received on the ICU will have affected your body and mind. It is common for patients in the ICU to experience hallucinations, nightmares, or dreams. You may have had dreams or feelings of being tortured, trapped in bed, or felt as if you were being held captive. This was probably caused by having drip lines and catheters inserted into your body to help support your body’s normal functions and monitor your condition. The fear this causes can remain for weeks after you have left the ICU. 

It may be helpful to discuss your nightmares and hallucinations with your family and friends (who may have featured in them) as it can help to explain their meaning and may help your own state of mind.

You may also have felt some paranoia as you tried to make sense of things when you were confused. These usually get better with time; however, if you are concerned, please do not hesitate to tell someone, or contact the CCRFT. Often arranging a visit to the ICU with the CCRFT can help you understand how normal sounds and sensations as part of your care may have been misinterpreted by your brain when it was recovering from illness.

Changes in cognition (thinking skills)

After an ICU admission you may notice changes in your memory, concentration, word-finding and other cognitive skills. These changes are very common and often improve without any intervention, although it may take longer than you would like – you may notice that your thinking skills are still improving up to a year after discharge from hospital. If you are concerned that cognitive changes are not improving with time or if they are impacting on your daily activities or work, then please do not hesitate to contact the CCRFT. 

If your admission to ICU was due to a stroke or other brain injury, then you may experience longer term problems with your cognition – you may be offered assessment and rehabilitation with specialist teams.

Eating well to get better

While you were in ICU you will have received your food as a liquid. You may have been fed through a tube inserted into your nose and down into your stomach, or by a drip straight through your vein. Your body will have used its stored fat and muscle for energy to help fight your illness.

When you are well enough to have solid food again, you may have difficulty eating because:
•    You don’t feel hungry
•    Your mouth is too sore to eat
•    Food tastes different
•    It hurts to swallow

Try starting off with small portions and eating more often throughout the day. Instead of having full meals, have small meals and two or three snacks each day. You can buy specially prepared milk drinks and desserts, like the ones you were given in hospital, which contain lots of vitamins and minerals.

Take your time when eating and relax afterwards to avoid indigestion. If some foods taste very salty or sweet it is likely that your taste buds are taking time to get back to normal. This is common and will soon improve, but don’t add extra salt or sugar to your food in the meantime.

If you enjoy drinking alcohol, check with your doctor that it is safe to drink it with the medication you are taking and that it will not have a bad effect on your condition. Even if it is safe, don’t drink too much. Current recommendations are for men and women to avoid drinking more that 14 units of alcohol a week on a regular basis.

Sometimes, taking strong antibiotics and steroids can lead to infections, such as oral candida (thrush in your mouth), which can give you a thick white substance on the roof of your mouth and tongue, making it painful to swallow. If you think you might have thrush, your GP will be able to treat it easily.

During your recovery you must make sure you drink enough. Take care not to become dehydrated. Dehydration can:
•    Dry out your skin
•    Make you produce less urine, which can have a bad effect on your kidneys
•    Make you feel very weak and tired

Drink regularly throughout the day so you don’t become dehydrated. You can have hot drinks as well as water and squash.

If you need more support or have symptoms that you’re worried about, you should see your GP. You should also talk to your GP if:
•    You have trouble getting back to your normal weight
•    Your bowel movement don’t return to normal
•    There is blood in your urine
•    You get severe dehydration

Your GP may be able to offer you advice or refer you to a dietitian.

Resources:

Alcohol abuse - www.drinkaware.co.uk

Age UK - www.ageuk.org.uk - 0800 678 1602

Asthma - www.asthma.org.uk - 0300 222 5800

Citizen’s Advice Bureau - www.citizensadvice.org.uk - 0800 144 8848

Diabetes and high blood pressure - www.nhs.uk/better-health

Drug abuse - www.talktofrank.com - 0800 77 66 00

Employment and Benefit Support - www.gov.uk/contact-jobcentre-plus

Guillain-Barre - www.gaincharity.org.uk - 0800 374803

Head injuries - www.headway.org.uk - 0808 800 2244

Heart disease - www.bhf.org.uk - 0300 330 3311

ICU steps A charity that supports intensive care survivors - www.icusteps.org  

Intensive Care Society - www.ics.ac.uk/icf/patients-and-relatives/ -www.healthunlocked.com/icusteps 

Macmillan Cancer Support - www.macmillan.org.uk - 0808 808 00 00

Meningitis

Mental Health - www.mind.org.uk - 0300 123 3393 - www.samaritans.org - 116 123

Return to activity

Smoking 

Spinal Injuries Association -  www.spinal.co.uk - 0800 980 0501

Stroke Association - www.stroke.org.uk - 0303 3033100

UK Sepsis Trust - Helpline: 0800 389 6255

Additional resurces

www.explainmyprocedure.com/gsticu/ 

Contact us

If you have any queries relating to this information, please contact the Intensive care medicine service.

About this information

Service:
Intensive care medicine

Reference:
MM/006

Approval date:
30 July 2024

Review date:
1 July 2027

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This page provides general information only. It is developed by clinical staff and is reviewed regularly every 3 years for accuracy. For personal advice about your health, or if you have any concerns, please speak to your doctor.