Critical Illness Recovery

You, a relative or friend may have recently received Critical Care.  This could have been in a High Dependency Unit (HDU) or Intensive Care Unit (ICU). These units are sometimes combined and during the COVID-19 pandemic you may even have received Critical Care support elsewhere in the hospital, due to the extra demand for beds.

This care would have involved treatment to support one or more organs which were beginning to fail. This could have been the lungs (breathing), heart and circulation (blood pressure or heart rate) or kidneys (not passing urine).

Your experience of Critical Care may continue to affect you physically and emotionally after you go home. It doesn’t matter how old you are, how unwell you were or how healthy or active you were prior to your illness. You have been very poorly and it may take some time for you to recover.

THIS IS FOR YOU, YOUR FAMILY AND YOUR FRIENDS

People are often shocked and upset by what someone in Critical Care has gone through.

Your family, friends and wider support network will be pleased you are back home, but they may not understand what you went through or why you feel like you do.

You will need their support as you recover. During the recovery process, although you may look well, you may not feel well. Your family, friends and wider support network need to understand this, so it’s important to share information on how you’re getting on with those that are close to you.

HOW LONG WILL IT TAKE YOU TO RECOVER? Open

Recovery will commonly involve your whole body. Many people encounter new physical, cognitive, psychological and emotional problems during their recovery. It is normal to go through a period of recovery and the majority of people will eventually make a full recovery.

  • Recovery time varies for each person. Generally, it can take a few weeks to a few months, but for some people it can take longer. Some people have very few or no problems following critical illness
  • There are contributing factors than can influence recovery such as age, medical history and length of hospital stay
  • For those people who have suffered significant organ damage, recovery can take time and be complex, often involving ongoing treatment. If you have suffered organ damage and/or had an amputation, further specific information will be provided to you by your healthcare providers
  • The recovery period following COVID-19 is still largely unknown, but is likely to have similarities to the recovery from sepsis
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WHY DID YOU NEED CRITICAL CARE? Open

Critical Care is where the most unwell patients in a hospital are treated.

In Critical Care:

  • you can be carefully watched and monitored, including checking your pulse; blood pressure; breathing rate; oxygen levels; how much liquid you take in and how much you urinate. These checks are all very important because staff can quickly identify any deterioration in your condition and change your treatment as needed
  • staff can give you treatment including support for your major organs, like your heart, kidneys and lungs
  • there are highly trained doctors, nurses, physiotherapists, pharmacists and dietitians who look after you, and support your relatives by explaining what is happening
  • nurses look after fewer patients. There may be one nurse looking after only one or two patients (though this ratio may have been stretched during the COVID-19 pandemic)

The reason for admission to Critical Care may have been because of complications due to CoViD-19.

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WHAT IS COVID-19? Open

A novel coronavirus, called the Severe Acute Respiratory Syndrome CoronaVirus 2 (SARS-CoV-2) is the virus that causes the Coronavirus Disease 2019 (COVID-19). Coronaviruses are
a family of viruses that cause disease in animals. Seven, including the new virus, have made the jump to humans, but most just cause cold or flu-like symptoms.

COVID-19 is closely related to severe acute respiratory syndrome (SARS) which swept around the world in 2002/2003. Another coronavirus is the Middle East Respiratory Syndrome (MERS), cases of which have been occurring sporadically since it first emerged in 2012.

Why did COVID-19 make you so unwell? If things got worse, it was likely due to the immune system overreacting to the virus. This causes inflammation around the body but particularly the lungs. Inflammation in the lungs is called pneumonitis.

In the lungs, there are tiny air sacs called alveoli. These are where oxygen moves into the blood and carbon dioxide moves out, but in patients with pneumonitis the tiny sacs start to become inflamed and fill with fluid. This eventually causes shortness of breath, low oxygen levels in the blood and difficulty breathing. If things get worse, some people need a ventilator to help them breathe.

Some patients may become more unwell because of the overwhelming response by the immune system and develop something called septic shock. This is when the blood pressure drops to dangerously low levels and organs stop working properly or fail completely. Septic shock means that further organs, in particular the heart and circulation system, and often the kidneys, require support.

In patients with COVID-19, the situation is further complicated by small blood clots forming. These can worsen the ability to breathe, and also cause a deterioration in the function of other organs.

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THE TREATMENT YOU MAY HAVE RECEIVED IN CRITICAL CARE Open

A team of doctors, nurses, physiotherapists and other health professionals will have treated you, looked after you and tried to make you as comfortable as possible.

The nurses will have spent the most time with you and they will have done things like:

  • checking how you were responding to treatment through watching your blood pressure, oxygen levels etc
  • giving you the drugs that you needed
  • washing you and changing your bed sheets
  • turning you often so that you didn’t get bedsores and moving your legs and arms so that you didn’t get too stiff
  • putting a catheter in. This tube would have been put into your bladder to allow urine to be collected
  • removing phlegm from your lungs. This would have been done using a suction tube which was put down your breathing tube. It may have made you cough and retch, which you may remember
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EQUIPMENT USED IN CRITICAL CARE Open

There is a range of equipment used in Critical Care that’s different from the rest of the hospital. Here are descriptions of some of the equipment and treatments used in Critical Care:

Alarms: Critical Care is noisier than a general hospital ward because of the equipment beeping, or sounding an alarm. If you heard an alarm it didn’t necessarily mean something was wrong, there may have just been something the staff needed to be aware of – for example a drug infusion which was nearing empty and needed to be changed.

Breathing tubes: Many patients in Critical Care need support with their breathing. In the most severely ill, this involves passing a plastic breathing tube (endotracheal tube) into the mouth and down the windpipe. Most patients will need sedation to keep them comfortable while this breathing tube is in place, though the staff will try to use as little sedation as possible to help the patient’s recovery.

Ventilator or breathing machine: The ventilator is also sometimes called a breathing machine. This helps the patient to breathe while they are very ill, or too sleepy or weak to breathe by themselves. It is connected to the patient via a tubing system and a breathing tube (endotracheal tube) that is inserted into the patient’s mouth and windpipe. The tubing allows the ventilator to push air and oxygen (under varying amounts of pressure) into the patient’s lungs. Sometimes a tracheostomy or ‘trache’ tube is required. This is connected to the ventilator via a tube that is inserted through the neck and into the windpipe.

Blood pressure monitoring: Blood pressure is measured in Critical Care using either a blood pressure cuff (like the one at your GP) or using a cannula inserted directly into an artery, usually in the wrist or groin. This is called an arterial line.

An arterial line can measure blood pressure accurately and continuously, helping to identify problems quickly. It can also be used to take blood samples which show how much oxygen and carbon dioxide is in the blood. This helps make sure that the patient is getting the right support from the ventilator.

Feeding in Critical Care: It’s very important for patients in Critical Care to maintain adequate nutrition and a good calorie intake in order to fight infection and enhance recovery, so while patients are unable to eat normally, feeding tubes are commonly used. A nasogastric tube (NG tube) is the most common type of feeding tube used. These are long thin tubes, placed by a nurse or the doctor, which goes into the nose, down the oesophagus (food pipe) until it reaches the stomach.

Some patients are unable to absorb food through their gut. In this case, the nutrition team will support the doctors in designing intravenous nutrition, otherwise known as TPN.

Kidney machine or ‘filter’: A kidney machine or ‘filter’ is a form of kidney support. This is a machine that can temporarily take over the work of the kidneys when they are struggling to work normally. Health professionals can monitor how well the patient’s kidneys are working by recording the amount of urine they pass and by doing simple blood tests.

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WHAT YOU MAY HAVE EXPERIENCED IN CRITICAL CARE Open

You may have no memory of your time in Critical Care, or you may have very confused memories of what happened to you there. The strong drugs and your treatment will have affected your body and mind.

You may have:

  • felt slightly aware but didn’t know where you were or what was happening
  • had nightmares or thought things were happening which were not real – and these can be very frightening. You may not have realised you were in hospital and your mind may have tried to make sense of what was happening, by making you think things like you had been kidnapped or were being held captive. Experiencing this confusion and hallucinations is called delirium and is very common.
  • been unable to talk or let people know what you were feeling
  • found it difficult to sleep or experienced strange dreams when you did
  • not known what time of day it was, or how long you had been in hospital

Not remembering what happened to you is extremely common. Memories can often be hazy or ‘jumbled’. It can be difficult to piece together what happened before being admitted, and what took place while you were there. Some people remember the end of their admission, whilst others remember almost nothing.

Some people are happy not to remember very much, but for others, this can be upsetting. It may be that you are only ready to find out more in the weeks, months and sometimes years after getting home. It may be that you just want to put it behind you. It’s completely up to you whether or not you’d like to find out more about what took place.

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HOW YOU MAY BE FEELING NOW Open

Here are some common physical and cognitive problems you may experience during recovery:

  • Fatigue
  • Problems sleeping
  • Brittle hair and hair loss
  • Joint pains and muscle weakness
  • Nausea
  • Breathlessness
  • Poor appetite
  • Change in vision and hearing
  • Reduced kidney function
  • Short term memory loss
  • Judgement and decision-making
  • Speech, for example finding the right words
  • Loss of concentration
  • Difficulty performing tasks that were previously simple
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WHAT YOU MAY BE THINKING NOW Open

Here are some of the most common psychological and emotional problems experienced during recovery:

  • Low mood and/or mood swings
  • Lack of interest in things that you previously enjoyed, and possibly your personal appearance
  • Anxiety about becoming unwell again
  • Loss of confidence
  • Wondering ‘what if I hadn’t survived?’, as well as feeling guilty that you did
  • Feeling guilty about what you have put your friends and family through
  • Flashbacks and nightmares
  • Frustrated that nobody understands
  • Strain on personal relationships

During your recovery you may experience some or all of the problems listed, while looking relatively well to the outside world. Be reassured that it is normal and common to experience physical, cognitive and psychological problems after any critical illness. Give it time and seek support as you need it – you are not alone in your recovery. It is important to take your time getting back to work, study or other activities. It may be advisable to discuss a phased return to work with your GP or Occupational Health team at work to assist with the recovery process. If you are currently in higher education, you may find it useful to talk to a Student Wellbeing Officer or academic advisor.

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WHAT TO DO TO HELP YOUR RECOVERY Open

There are a number of ways to help yourself during your recovery period. These include:

Time: Allow yourself time to recover – there is no standard pattern for this and recovery times vary greatly.

Pacing: It can take time to recover physically, so try to pace your activity and do not rush yourself. Remember to work on things you enjoy, as well as things you know you ought to do. Try to take time for the things that you would have enjoyed before, even if you don’t feel like doing much. Your strength should slowly return as you become more active, but this may take longer than you expect it to. Try to think of your energy a bit like your household budget: don’t spend it all on day one – spread it out over the days.

Space to talk: The more often you have the opportunity to share your thoughts and feelings about what happened in a way that feels comforting to you, the better your recovery. The support nurses at the UK Sepsis Trust can provide you with information, support and advice about what has happened and what to expect.

Self-care: Look after yourself. Try to eat healthy, nutritious food including fresh fruit and vegetables and drink plenty of water. Preparing meals can be tiring, especially when living on your own. If you have little appetite when you leave hospital, try eating little but more often if you struggle with bigger meals. In the early recovery phase, it is normal to find yourself eating more and craving things like protein. Listen to your body ­– it needs these vital ingredients to rebuild itself.

Sleep: You need regular sleep to keep your body healthy. 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 frequently during the night. Sleep should eventually improve, there is helpful information here with some simple steps on how help you get a better nights sleep.  If things don’t improve you can  contact your GP for advice about sleep.

Managing stress and anxiety: As you get better and start doing more, you may face new challenges. One common challenge is accepting that you were ill, understanding that illness and focusing on how to get better. This can make you feel scared but, with guidance and support, this should become more manageable. You will find helpful resources and tips to help you manage your anxiety here.

Diary: Keeping a daily diary documenting your physical symptoms and feelings, sleep and activity can be both therapeutic and useful. A diary can chart your progress and can help you to monitor any symptoms that you may want to discuss with your GP. It is important to celebrate your achievements, regardless of how small you feel they may be.

Light Exercise: It is important to keep mobile if possible, but you may not have energy to do the same amount of exercise that you were doing before you were ill and may have lost muscle tone. The NHS Choices website has some gentle exercises to get you started for improving strength, balance, and flexibility. Some of these can be done sitting or standing. Although these exercises are suggested for older people, they are helpful for everyone to build up their strength, slowly. Exercises for strength, balance and flexibility as well as exercises to do whilst sitting can be found at: nhs.uk/live-well/exercise/easy-low-impact-exercises/

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WHERE TO GET HELP AND SUPPORT Open

UK Sepsis Trust: We provide support to people affected by critical illness, you can contact us by calling 0808 800 0029 or by requesting email support. You can talk to nurses with experience of Critical Care and recovery.

Family and friends: Loved ones can help with daily chores like laundry and shopping. They are also there to listen to what you have been through and will need to understand that it may take some time for you to feel better again.

GP: It is important to update your GP with your progress, especially if you have had a long Critical Care stay. Your GP can also review your medicines and may be able to offer you treatment or refer you to physiotherapy, dietitian services, occupational therapy and/or talking therapy to help you through your recovery.

Critical Care follow up: Under ‘normal’ circumstances, some Critical Care Units provide a follow up service. This does vary but will often include an outpatient appointment to see the doctors and nurses who may have been involved with your care. This may also be an opportunity to re-visit the Unit. Although frightening, some people find this experience very beneficial and can help to fill in some blanks. We are unsure how the COVID-19 pandemic will affect these services in the short term.

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WHEN TO SEEK EXPERT HELP Open

Most symptoms will improve with time as you make adjustments. You will get aches and pains, just like any other person. This is normal and does not necessarily mean anything bad.

Speak to your GP if you are still experiencing the following problems more than a month after discharge from hospital:

  • Frequent anxiety or worries that interfere with your ability to face day-to-day life
  • Low mood or depression, impacting on motivation, your opinion of yourself, or your thoughts about the future
  • Continued poor sleep, ongoing nightmares or flashbacks
  • Change in behaviour
  • Difficulty doing previously ‘normal’ tasks, or looking after the home and family
  • Using drugs (prescription/ non-prescription/ recreational) or drinking a lot of alcohol.
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RETURNING TO WORK Open

Going back to work can be a really daunting prospect! Some of the problems that occur after a critical illness, such as fatigue, poor memory and anxiety, can make resuming work difficult or impossible.  When to go back varies greatly from person to person  and depends on a number of factors, it is important not to rush back to quickly and to discuss returning to work with your doctor, occupational health department and employer. You may also have lost confidence and be worried if you will be able to perform your job as you did before you were ill.  You should discuss these concerns with your employer, if they are aware they may be able to make some changes to how you work, these are known as reasonable adjustments.  They can arrange to have regular reviews with you to ensure you are settling back in and give you the opportunity to discuss any concerns.  Example of reasonable adjustments are:

  • Flexible working (e.g. altering start/finish times, working from home where appropriate, part time working, job sharing)
  • Changing tasks or the pace of work to avoid exacerbating the condition
  • Allowing for reasonable time off for appointments and treatment
  • Changing layout of workspace (e.g. desk)
  • More frequent and/or longer breaks
  • Providing a quiet place for you to rest without being disturbed
  • Alteration of sickness absence or capability policies

For more advice on issues relating to employment, visit Citizens Advice workCitizens Advice benefits or Citizens Advice on problems at work. It’s also a good idea to signpost your employer the information in our Returning to Work booklet.

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RESOURCES Open

Critical Care Recovery
www.criticalcarerecovery.com

ICU Steps
www.icusteps.com

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