You are welcome to visit the ICU at any time and we encourage family members and close friends to visit their loved ones as this can help the wellbeing of the patient and aid their recovery. We also welcome children to visit, however you may need to give this some thought before they visit.

Our staff realise that having a sick family member in ICU can be stressful for yourself and other family members, especially children, whom may have many questions why their relative is missing from family life.

Should I allow my child to visit?

This can be a hard decision for parents or carers to make as you may be unsure if it will harm or benefit your child—your decision may depend upon the age of the child, the condition of your relative and your child’s desire to visit.

Research has shown that children over the age of four mainly find visiting a sick relative helpful as it increases their understanding and involvement in their relative’s illness and reduces their feelings of separation and fear. However, do not force your child to visit if they do not wish to.

The decision to visit does lie with you, but the nursing staff and doctors caring for your relative will also be able to advise you and provide you with practical suggestions in managing a visit. Some other considerations for you are detailed next.

Age related considerations

• Infants: Babies aged less than 1 year do not have a fully developed immune system. Therefore, there is a very small risk that they might pick up an infection from the ICU. They will not be aware of the situation, and should the baby start to cry, it would be best to leave the ICU.
• Toddlers: Young children aged less than 3 years will often want to see close relatives who are in ICU (parents, siblings, grandparents). They will not be able to understand what is happening and they may find it a frightening and scary place. If you decide that they should visit, they should be with an adult to make sure that they are kept safe and who can also explain, in very simple terms, what they see. The visit should be kept short and last only a few minutes.
• Children aged 3–6 years: Some children of this age benefit from visiting a sick relative, whereas others may find the experience upsetting. Spend some time talking about what they will see before and during the visit. Children of this age may wish to draw a picture for their relative that can be kept at their bedside. Children in this age group should always visit with an adult and the visits should be kept to a few minutes at a time.
• School-aged children: Should be able to visit their sick relative. They need the situation explained to them and they should be encouraged to ask questions allowing for any misunderstandings to be cleared up before the visit. They should not be left by themselves and should keep their visit to a maximum of 5–10 minutes.
• Adolescents: Should be able to visit their sick relative. Although they may fully understand the situation, it is important that they are supported by an adult and encouraged to ask questions to clarify any misunderstandings.

I don’t want my child to visit

If you choose not for your child to visit, please try to keep them involved by encouraging them to draw pictures to send to their relative or recording a message that can be played to them.

If they ask questions about their relative, explain to them simply what is happening, eg: “Grandpa is in hospital as he is feeling very ill and is sleeping a lot—that’s why you haven’t been round to his house to see him.”

How can I support my child?

• Talk to your child before their visit about what to expect: The environment of ICU, how their relative may look, smells, staff working there etc.
• Be with them during the visit: Make the time about them being with their family member.
• Be prepared for questions they may ask: Talk to your nurse about this, they can help you explain the situation.
• Talk about the visit and your relatives’ illness once you have returned home: Your child may have questions or may wish to talk through the experience with you.
• Make sure that your child’s school or nursery is aware that you have a very sick relative: They can provide extra support to you and your child.

If you or your children are finding it hard to cope, please speak to your nurse as we can put you in touch with people who can help.

Simple Guidelines

If you do decide to bring your children on to ICU to visit a relative we ask you please:

• Only bring children to visit immediate family members (eg parents, siblings or grandparents).
• Do not bring in children who are unwell or have any signs of infections. Patients in ICU are very susceptible to infection. Please do not put them at risk.
• Do check that your children are up to date with their immunisations. If not, please don’t bring them in.
• Please ensure that your child is supervised by an adult at all times.
• The unit has lots of electrical equipment, tubing and wires. Please do not allow small children to play with them.
• Let the staff know when you will visit—we can then keep waiting to a minimum.
• We suggest that visits by children are kept to 5–10 minutes at a time. Any longer and they may become restless or bored.
• Try to come with another person who will be able to play with your child in the waiting room, giving you more time with your relative.
• Bring along some books, colouring in or handheld games consoles to keep them busy while waiting.
• Help us to maintain good infection control— when visiting always remove outside jackets and watches, hands should be washed on entering and leaving the ICU (you can use alcohol gel).
• Do not allow your child to sit on the bed, but they will be able to hold hands or give their relative a cuddle (ask your nurse to help with this).

This information has been written to answer some of the questions you may have when a member of your family or a close friend has been admitted to the Intensive Care Unit (ICU)/High Dependency Unit (HDU).

Please feel free to ask any questions at any time. We would also welcome any suggestions you may have to improve our service.

All the staff working in intensive care are dedicated to providing healthcare of the highest possible standard. We will provide care in such a way as to respect the dignity, privacy and confidentiality of each patient and his or her family.

We aim to treat each patient as an individual and act as the patient’s advocate, in conjunction with family and significant others.

Contact information

Intensive Care Unit- Chelsea and Westminster Hospital
T: 020 3315 4331

Intensive Care Unit- West Middlesex University Hospital
T: 020 8321 5833

Admission to the Intensive Care Unit (ICU)/High Dependency Unit (HDU)

A patient whose condition is extremely serious, possibly life-threatening, is often taken to an Intensive Care Unit (ICU) which provides constant observation and treatment from specially trained staff qualified to use specialised equipment.

Some admissions to the ICU are planned, usually after major surgery or in order for specialist treatments to be performed.

In such cases it may be possible to visit the unit beforehand or speak with staff working in pre-operative assessment. This can help you and your relative or friend by showing you the environment of an ICU in advance. However, most admissions are in emergency situations.

You may also hear the unit referred to as ITU—that stands for Intensive Therapy Unit. It means the same as ICU.

Our units are combined ICU and High Dependency Unit (HDU). HDUs are for patients who require less monitoring or treatment than is normally provided in an ICU.

Due to clinical need, men and women are nursed next to each other on the unit—the staff will endeavour to maintain your relative’s or friend’s dignity at all times.

When you or your relative or friend is discharged they will either go to a side room or a single sex bay on a ward.

Technology in the ICU

The Intensive Care Unit uses machines which can look frightening when seen for the first time. These machines help us to monitor and support a patient’s normal body functions.

Each patient is attached to a machine called a cardiac monitor. Small, sticky pads are placed on the patient’s chest and are connected to a machine.

The machine picks up electrical impulses from a patient’s heart and can detect any abnormalities. The monitor can also show a patient’s blood pressure and temperature. It is normal for the numbers on the monitor to keep changing.

Patients who are not strong enough to breathe on their own will be connected to a ventilator (breathing machine). This is attached to a tube passing through the nose or mouth into the windpipe. The tube, which is known as an endotracheal tube, is connected to a machine that blows air and extra oxygen in and out of the lungs.

The machine can ‘breathe’ completely for a patient or it can be set to assist a patient’s own breathing. Patients can be gradually weaned off a ventilator when their condition improves.

If a patient is likely to remain on a ventilator for more than a few days, the endotracheal tube is sometimes replaced with a tracheostomy. In this case an operation is carried out to insert a tube into a hole made in the throat. Although this can look quite strange, it is actually more comfortable for the patient than having a tube in their mouth.

Please remember that, although unable to speak, your relative or friend may be able to hear you. By all means do talk to them, but questions should be put so that they can be answered with a nod or shake of their head.

Patients are often attached to drips or infusions. These allow liquids to be passed through tubes into veins, usually in the side of the neck, arm or hand.

There are various substances commonly used in drips. Fluids can be used for various reasons including rehydration and maintenance of blood pressure. A pump is attached to the drip to administer the drugs at the correct rate.

Food, in the form of liquid, containing essential nutrients can be given either through the nose via a tube which goes down into the stomach, or by using a drip.

Your relative or friend will have a urinary catheter in order to empty their bladder. We measure the urine every hour so that we can assess how the kidneys are working.

Many of the machines have alarms and flashing lights. They go off quite often for a variety of reasons. Please do not be frightened by the lights or noises. The alarms are to attract the attention of the staff.

The nurse will be happy to explain the equipment to you. There is also a folder in the waiting room entitled Equipment in ICU. Please ask questions if you don’t understand something or would like to know more.

Always ask for clarification if jargon or technical terms are used. Staff working on the unit are used to this language and we sometimes forget how baffling and frightening it can be for other people.

Can I help?

Some of the drugs will keep a patient deeply asleep. However, you should always assume that the patient can hear you and understand everything that you are saying.

Do feel free to talk to your relative or friend. Do not be afraid to touch your relative or friend. It may be comforting for both of you.

While your relative or friend is in intensive care you may want to help with the care being given. This could involve simple mouth care or helping to wash your relative or friend. This would be done under the supervision of a nurse.

The nurse will be able to advise and discuss this with you.

The ICU team

There is a photo board in the corridor into the unit which shows the ICU team.

All staff wear scrubs which are changed after each shift. Everyone will be wearing identification as it may be difficult to know if someone is a doctor, nurse, therapist or other member of the ICU team. Everyone on the unit should introduce themselves to you but please ask if you are unsure.

Medical team

On the unit we have ICU consultants who provide cover for the unit 24/7. You may be introduced to different consultants during your friend’s or relative’s stay, however they will have been given an in-depth handover of your friend’s or relative’s condition. The consultant is supported by a team of specialist registrars and core trainees.

Nursing team

Nursing care is provided by our team of about ICU nurses. Each nurse is a member of one our nursing teams.

When your relative or friend is admitted to the unit, they will be cared for by a primary nursing team. This approach allows us to get to know the patient and you better. It also helps you to get to know the nurses caring for your relative or friend.

Continuity of care

Every effort is made to ensure patients receive high quality care from the nursing teams. There may be occasions when a member of the team may not be on duty. If this occurs, a nurse from another team will care for your relative or friend for the shift. At times it may be necessary for a non-team member to make decisions about care in collaboration with others, due to the patient’s condition. The primary nurse will be made aware of these changes on their return.

The unit consists of intensive care and high dependency beds. In intensive care, one nurse cares for one patient whereas in high dependency, one nurse cares for two patients.

Physiotherapists

There is a physiotherapy service for all patients on the ICU. A team of physiotherapists will assess each patient on a daily basis to identify any areas that may benefit from treatment.

This may include:

• Listening to the chest and clearing the lungs
• Maintaining a range of limb movements and mobility in bed, such as stretches and splinting
• Strengthening exercises and facilitating mobility, such as transferring to a chair and aiding walking

It may come as a surprise to some people that while patients are so unwell they have physiotherapy—however it is at this time that it is so important for patients to be stimulated, as this plays a vital part in the recovery process.

Not every patient will require the same amount of input—some patients will just have a daily review, whereas others may receive treatment several times a day. It is the role of the physiotherapist to determine how much input is appropriate for each patients. Sometimes it is useful to get relatives to encourage and help carry out exercises with the patient.

The same physiotherapist working in ICU will initially continue to treat patients when they move to the ward but, as the patient improves, other teams may be more involved in the ongoing rehabilitation.

If you have any questions regarding the physiotherapy service for patients on ICU, please speak to the nurse in charge who will contact the physiotherapy team.

Critical Care Outreach Team

This is a group of specialised nurses who are trained in critical care and provide a link between patients on the ward and the ICU.

Radiographer

The radiographer takes images of the patient’s chest using a portable X-ray machine. Most patients have a daily X-ray in the morning to check either their lungs or the placement of specialised lines.

Pharmacist

In ICU patients receive a lot of drugs. The role of the pharmacist is to ensure that patients are given appropriate medicines, the unit has an adequate supply, and to answer any questions staff have relating to medications.

Dietitian

The dietitian plays a vital role in ensuring the patient receives adequate calories to fight infection and their critical illness. They will visit daily to check on patients.

Speech and Language Therapist

The role of the Speech and Language Therapist in intensive care is to assess and treat eating and swallowing problems that critically ill patients may have. They also help with communication.

Technician

The ICU has a lot of equipment. The technician’s role is to look after the equipment, train staff on its use, and replace devices when they expire or are damaged.

These are only a small number of the many staff who work within the multidisciplinary team to provide expert care to your relative or friend.

Psychology

ICU can be at times difficult to cope with.   We have a psychology team that can help support you with and your relative during their stay in ICU.

A day in intensive care

The day is planned as much as possible around the individual needs of your relative or friend. There is a basic structure to the day:

7:45–10am: Nursing and medical staff hand over from the night shift to the day shift. In this time the intensive care team meets to review each patient’s condition and decide any changes in treatment.

10am–4pm: Each patient’s individual plan of care will be carried out during this time. This may include physiotherapy, further tests on or outside the ICU, changes to drips and tubes, or assessments and care by other members of our multidisciplinary team.

5–6pm: Evening rounds to review the conditions of all our patients.

7:45–8:15pm: Night shift nurses start work.

Visiting the unit

Security intercom

On arrival to the unit you will find an intercom system outside the entrance. Press the buzzer and, when someone answers, please say who you are and who you are visiting. It sometimes takes a while to answer the buzzer if the nurses are busy. Please be patient.

At times you may have to wait before coming into the area where patients are being cared for.

There is a waiting room available for your use. There are many aspects of care which have to be done around the clock and waiting is sometimes unavoidable.

Infection control

Infection control is extremely important in the ICU and there are a number of ways you can help us in this area:

• Please ensure you clean your hands on entering and leaving the unit by either washing your hands or using the alcohol hand gel placed around the unit
• Please do not handle any lines or tubing
• Refrain from sitting on patients’ beds
• Do not bring flowers or plants into the unit
• Keep patients’ property to a minimum
• Do not bring young babies into the unit—however, in exceptional circumstances, please discuss this with the nurse in charge.

Please speak to a staff member if you have any queries about infection control issues.

Visiting times

Visiting times are from 10am–10pm. Please speak to the nurse in charge if you need to visit outside of these hours, the team are always flexible.

You may be asked to leave during visiting times to allow for patient care or during ward rounds to ensure confidentiality.

Too many visitors at one time can be very tiring for patients. We ask that this is limited to a maximum of two to three visitors at the bedside.

Please respect the privacy and confidentiality of other patients in the unit. All patients have the right to this.

If your relative or friend is in ICU for a long time, you may find that visiting becomes harder. It is quite normal to feel helpless because it seems there is nothing you can do.

You could pass the time by reading aloud from a favourite book or a newspaper, if your friend or relative is unconscious.

It can be helpful for you to have someone to talk to. A hospital chaplain can visit or they can arrange for a representative of a specific faith or belief to come and see you.

Visiting can be very tiring. It is understandable to be worried about your relative or friend but it is important to take care of yourself. Try to rest properly and don’t forget to eat sensibly.

Young visitors

Children are welcome. If you feel unsure about this, discuss it with the nursing staff. We would also advise you to bring in something to occupy them during the visit.

Transport/parking

There are public transport options and a car park under the hospital—full details are on the Trust website.

The hospital has limited parking in the hospital car park and queues can occur from late morning to early afternoon.

Close relatives of patients in the unit are able to park free of charge. Ask the nursing staff to fill in a form when you leave. You must present this signed form to security at the main reception before leaving the hospital.

Gifts and presents

Most patients in the unit are not able to eat or drink normally. Please check with the nurse before bringing in food and drink.

Flowers and plants are not allowed on the unit as they can spread infection to our patients.

We would suggest:

• Toiletries
• Personal music devices
• Photographs and cards from family

Clothing and property

There is limited storage space for personal property. While patients are in ICU they are not likely to need many items, however glasses and hearing aids are helpful in keeping people orientated.

If your relative or friend comes from home or another ward with property, you may be asked to take non-essential items home for safekeeping. If property is kept on ICU it will be recorded on a property form—please ask a nurse for a copy of this.

When patients start to get better and have less monitoring, it is nice for them to be able to wear their own clothes. A nurse may ask you to bring some in.

Cash, credit cards and jewellery should never be left at the hospital. Your own personal property should never be left unattended when you are visiting.

Making enquiries

We ask that the family or friends of the patient nominate one person who can phone the unit and pass the information on. This will save us repeating the same information to many different people.

At times it may be necessary to restrict the information we give on the phone to maintain patient confidentiality.

If you would like to talk to the doctor, please ask a member of staff and this can be arranged.

The direct line telephone numbers are:  

• Chelsea and Westminster 020 3315 4331
• West Middlesex 020 8321 5833

Using mobile phones

You are able to use your mobile phone but we ask that you restrict this to non-clinical areas only.

If you need to charge your mobile phone, please ask a member of staff first.

Filming or taking photographs of patients or members of staff without their permission is strictly prohibited.

Refreshments

Chelsea and Westminster

Costa Coffee (Ground Floor, Lift Bank B) is open 24/7.

The hospital restaurant (Lower Ground Floor, Lift Bank D) is open Mon–Fri,

There are shops, bars and restaurants along Fulham Road.

West Middlesex Hospital

Costa Coffee (Ground Floor, Lift Bank B) is open during the day.

The hospital restaurant (Ground Floor,) is open Mon–Fri

There are also shops on the ground floor. 

Facilities

Banks

Chelsea and Westminster

A cashpoint is at the front of the hospital (immediately on the right as you exit) as well as in front of Tesco (which is open 24/7) just over the road.

West Middlesex

A cashpoint is at the front of the hospital in M&S.

Toilets

Both ICU’s have toilet facilities for visitors by the waiting areas.

Chaplaincy service

The multi-faith chaplaincy offers support to patients and visitors of all faiths or none to help with their spiritual and religious needs.

For a place of quiet, prayer and reflection we have the following available:

at Chelsea and Westminster hospital.

the chapel is on the 1st Floor, Lift Bank C, and the Islamic tent is on the 4th Floor, Lift Bank D

At west Middlesex the chapel is on the ground floor

Please speak to a member of staff if you would like to see a chaplain. The chaplaincy team is happy to make visits and can also arrange visits by ministers of other faiths and beliefs.

Interpreting service

We are able to book professional interpreters for patients or families who speak English as a second language.

This service is provided by the Trust without charge to our patients or their families.

Going to the ward

The consultant will decide when your relative or friend is able to be discharged from ICU to a ward. Your relative or friend will be seen by the critical care outreach team, who will continue to see them once they have moved to a ward. 

If a patient dies

The purpose of an ICU is to treat seriously ill patients and hopefully help them recover. In some cases, however, despite all our best efforts, a patient will not recover.

In these situations the doctors may need to discuss the appropriateness of further treatment. Doctors are usually able to prepare those concerned if their relative or friend is approaching a critical stage.

Organ donation

It may be possible for a patient who has died to become an organ donor. Organ donation is an option if a patient on a ventilator suffers brain-stem death.

It may also be possible for body tissue to be donated within 24 hours of death.

You may find that organ donation is a positive outcome even in the midst of grief, particularly if you know it is something your relative or friend would have wanted.

The staff can talk to you about the possibilities of donation.

After a death

The death of someone close to you can leave feelings of anger, numbness, tiredness and helplessness, as well as deep sadness. Coming to terms with your loss can be a long process and it is perfectly natural for it to take time.

You will be given a copy of the Trust’s bereavement service guide. In this booklet there is practical information, advice and a list of organisations you can contact for additional support.

You will also need to make an appointment with the bereavement officer—they, too, can offer advice and answer any queries.

Tell us what you think

It is important that any problems are dealt with quickly, at an early stage. Please talk to the staff on duty if you have any concerns.

If you feel unhappy about the way we have handled your concern please talk to the Matron in intensive care.

A relatives’ satisfaction survey is available for you to fill in. These are accessed via a QR code. There are posters on the ICU with the QR code.

The surveys enable us to act on any suggestions you may have to improve our service.

Glossary of ICU terms

When you are in ICU you will inevitably hear terms or abbreviations that are unfamiliar to you. This is a short list of the most common ones. 

Blood gas machine—a machine which measures the blood gases.

Blood gases—a blood test to check the level of oxygen, carbon dioxide and acidity which may be done several times a day.

Carbon dioxide (CO2)—the waste gas eliminated by the lungs.

Catheter—used to empty a patient’s bladder.

CCU/ICU/ITU—Intensive Care Units can be referred to by various names which mean the same thing, for example Critical Care Unit (CCU), Intensive Care Unit (ICU) or Intensive Therapy Unit (ITU). The unit cares for patients with acute illness or injury that require specialised procedures and treatments by specialised staff.

Central line—a line that is inserted into the patient in order for liquids/drugs to be passed into their veins.

Critical Care Team—a team of health professionals who care for critically ill and injured patients. It includes predominantly a critical care intensivist and a critical care nurse, but may also include physiotherapists, pharmacists, technicians, social workers and clergy.

Endotracheal tube—a tube which is inserted through either the patient’s nose or throat into the windpipe and is sometimes referred to as an ET tube.

Intensivist—a critical care physician whose medical practice is focused entirely on the care of critically ill and injured patients.

PO2—Blood oxygen level.

Pulse oximeter—a probe that wraps around a finger or toe, connected to a machine, which measures how much oxygen the blood is carrying.

Speaking valve—this allows a patient with a tracheostomy to use their voice and is only used as the patient’s condition improves.

Suction—mechanical removal of mucous from the nose, throat or endotracheal tube with a plastic tube.

Tracheostomy—a tracheostomy (or ‘trachy’) is a tube inserted into the windpipe via a hole in the patient’s throat. This sounds very daunting and can look strange, but it is much more comfortable for patients and means they can be awake.

Ventilator—also known as a breathing machine, this piece of equipment blows air and oxygen in and out of the lungs. The breathing machine can do all the breathing for the patient or it can assist the patient’s own breathing.

Weaning—the process of taking a patient off the ventilator once they are able to breathe on their own.

X-ray

What is it?

A film, similar to photographic film, is placed behind the part of the body being X-rayed. The X-ray machine fires a short burst of X-rays through part of your body.

The more X-rays that hit the film, the blacker it develops—so solid parts of the body that block many of the X-rays show up white (such as bones). Hollow or air-filled parts of the body show up black (such as parts of the lung).

Why are they done in ICU?

Chest X-rays are commonly used in ICU to look at people’s lungs and to check the position of intravenous lines and drains.

CT scan

What is it?

A CT scan, also known as a CAT scan, is a specialised X-ray test. CT stands for computerised tomography and CAT for computed axial tomography.

A CT scan can be done on any section of the head or body. It can give clear pictures of bones and soft tissue, such as muscles, organs, large blood vessels, the brain and nerves, which an ordinary X-ray test cannot show.

Why are they done in ICU?

The most commonly performed CT scan is of the brain to determine the cause of a decreased conscious level, or to assess serious head injuries. Other uses of a CT scan in ICU include:

• To detect abnormalities in the body, such as tumours, abscesses, abnormal blood vessels, fluid collections etc
• To give a clear picture of an area of the body before or after surgery
• To help doctors find the right place to take biopsies (tissue samples)

MRI scan

What is it?

MRI stands for magnetic resonance imaging. An MRI scan uses a strong magnetic field and radio waves to create pictures, on a computer, of tissues, organs and other structures inside the body.

An MRI scan can create clear pictures of most parts of the body so it is useful for all sorts of reasons where other tests (such as X-rays) do not give enough information required.

Why are they done in ICU?

MRI scans are used to get detailed pictures of the body to detect abnormalities.

The MRI scanner uses an extremely strong magnet, so some people cannot be scanned. This is because the magnet can potentially move medical devices with metal in them or affect their function—staff on the ICU would check this before a scan is performed.

Bronchoscopy

What is it?

Bronchoscopy is a procedure which can help to diagnose and treat some conditions of the airways (bronchi) and lungs.

The bronchoscope is a thin, flexible telescope. It is passed through an endotracheal tube or tracheostomy and down into the bronchi and into the lungs. The tip of the endoscope contains a light and a tiny video camera so the doctor can see inside the airway and lungs.

Why are they done in ICU?

A bronchoscopy may be done to help diagnose respiratory (breathing) problems—this can be done by the doctor just looking, by taking samples of tissue (biopsies) or by taking samples of sputum. They can also be used to help treat pneumonia and chest infections by clearing the lungs of sputum.

Endoscopy/gastrostomy

What is it?

A gastroscopy is a test where a doctor looks into the upper part of your gut (the upper gastrointestinal tract). The upper gut consists of the oesophagus (gullet), stomach and duodenum. The doctor uses an endoscope to look inside your gut—the test is sometimes called endoscopy. An endoscope is a thin, flexible, telescope. The endoscope is passed through the mouth, into the gut. The tip of the endoscope contains a light and a tiny video camera so the operator can see inside your gut.

Why are they done in ICU?

A gastroscopy may be advised if the ICU team are worried that there may be bleeding from the gut. The doctors can then detect or rule out problems such as ulcers, gastritis (inflammation of the stomach), duodenitis (inflammation of the duodenum) or other conditions.

Lumber puncture

What is it?

A lumbar puncture (sometimes called a spinal tap) is a procedure where a sample of cerebrospinal fluid (CSF) is taken for testing. CSF is the fluid that surrounds the brain (cerebrum) and spinal cord.

This is done by inserting a needle through the skin and tissues between two vertebrae into the space around the spinal cord which is filled with CSF. Some fluid leaks back through the needle and is collected in a sterile pot. Sometimes we will also measure the pressure of the fluid. This is done by attaching a special tube to the needle which can measure the pressure of the fluid coming out

Why are they done in ICU?

This test is mainly used to diagnose meningitis (an infection of the meninges—the lining that surrounds the brain and spinal cord). It is also used to help diagnose some other conditions of the brain and spinal cord.

What is the role of the physiotherapist in ICU?

The physiotherapist’s role within ICU can be separated into two key areas—respiratory and rehabilitation.

What is respiratory physiotherapy?

Every day our lungs produce 100mls of fluid called sputum. Sputum traps the dirt particles that we breathe in. This is normally coughed and cleared during the day to clean the lungs.

Patients in ICU may require mechanical ventilation to help their breathing. This is necessary to allow the body to heal, however it stops patients from coughing and clearing the daily sputum load.

This is made worse if the patient has pneumonia or a chest infection, as more sputum is produced.

Physiotherapists help patients to clear this excess sputum, reducing the chance of chest infections and treating infections when they occur.

How does the physiotherapist do this?

• Early activity: Such as getting into the chair or walking. This encourages deep breaths and coughing.
• Positioning patients: To allow gravity to help sputum drain from the lungs.
• Manual techniques such as shaking and vibrations: These are applied to the ribs to try to loosen and clear the sputum.
• The ‘BIRD’: This is a device that blows air into the lungs to encourage a deep breath.
• Suction: By placing a small tube into the lungs to suck out the excess sputum.

What is rehabilitation physiotherapy?

Patients on ICU can become weak very quickly, losing up to 2% of muscle daily. They can also experience joint stiffness, muscle tightness and reduced fitness—this can lead to long-term disability.

Physiotherapists play a vital role in maintaining and improving muscle strength and joint movement.

How will the physiotherapist do this?

• Stretches or splints for hands or feet: To prevent muscle and joint stiffness.
• Bed and chair bike: These bikes can passively move the legs to reduce joint stiffness and improve circulation, or they can be used actively to improve strength.
• Electrical stimulation: Electrodes to contract the muscle electronically, keeping it strong.
• Improve the way you sit to stand: For example, by practising sitting on the edge of the bed (postural control).
• Being tilted into standing using a tilt table: To strengthen muscles and bones.
• Standing and walking practice
• Bed exercises

How will the physiotherapist help with weaning?

If you are on the ventilator for a long time, your respiratory muscles get weak. Weaning means reducing the ventilator’s support so patients can breathe for themselves.

As physiotherapists play a vital role in regaining muscle strength, they work closely with the ICU team to make a ‘weaning plan’.

Will this muscle wasting last forever?

Some patients will return to normal—however others may develop long-term weakness.

It is difficult to predict how long it will take you to get better.

Is there anything I can do?

• Massaging your relatives’ hands and feet: This can help to keep the skin moist, reduce swelling and improve sensation.
• Stretching out their fingers and feet: This will help to keep the joints mobile.
• Talking to the physiotherapist about any hobbies or interests: This may help us to tailor the rehabilitation programme.
• Exercises: Carrying out the exercises prescribed by the physiotherapist.

How will I know if they are getting better?

The ICU team will keep you up to date with your relative’s progress. The physiotherapists also complete a daily functional score called the CPAx.

This enables us to monitor people’s physical recovery—we encourage you to discuss this with the physiotherapists so that you can track their progress.

What is a critical care transfer?

This is the movement of very sick patients from one critical care area to another.

Why do we transfer patients?

Reasons for transferring sick patients can include:

• Tests or investigations
• Moving to a higher level of care
• Moving to specialist care, this would include for cardiac surgery, neurosurgery, burns, trauma, spinal, liver, renal or paediatric care.
• Moving to a lower level of care
• Returning to your nearest hospital to home
• Allowing access to critical care for others

Your medical and nursing team will be able to explain the reasons for your/ your loved ones transfer.  

What can you expect?

You/ your loved one will transferred by a team of staff who are familiar with the care of critically patients and the needs during transfer.

Depending upon the reason for the transfer, this will decide the speed at which it needs to be done.

Transport

The hospital staff will arrange an ambulance if required. Due to space on the ambulance it is not possible for relatives or friends to travel in the ambulance.

Please speak with your doctors or nurses regarding travelling to the new hospital.

Communication

Once a decision has been made about the transfer you will be informed by the hospital staff.  They will tell you about the following:

• Where you/you loved one is going
• Why they are going
• When the transfer will happen 
• What you need to do
• Contact details of where you/your loved is going  

Escorting staff and equipment

Where possible the staff transferring you /your loved one will be the staff that are currently looking after you.  However on occasion, you/ your loved one may have a different team who are familiar with the care of critically patients and the needs during transfer. 

The equipment used during transfer to support you/your loved one is specifically designed for transferring critically ill patients.  Staff are familiar with the equipment and you/ your loved one will be put on the transfer equipment for a period of time before leaving to ensure that everything is stable. 

Travelling to the new hospital or critical care area

If travelling by ambulance, loved ones and friends should make their own way to the new location; they will not be able to follow the ambulance.

In the event of an emergency it may be required for a diversion to an alternative destination. This will be to maintain the safety of the patient, and you will be notified as soon as practically possible.

On arrival

It will take time to handover your/ loved ones care and to transfer to the receiving hospitals equipment. Depending on the reason for the transfer there may also be a period of time you/ loved one are undergoing tests, investigations or treatment. The staff will give you information about how long this may take.

What is the main purpose of a ventilator?

A ventilator can be life-saving but it does not fix the primary disease or injury. It helps support the patient’s breathing while the primary reason for initiating the ventilation is stabilised, improved or treated. The doctors always try to wean the patient off the ventilator at the earliest possible time.

How does a ventilator work?

The ventilator does all the breathing for the patient or assists the patient’s own breathing by blowing oxygen and air into the lungs and extracting out carbon dioxide. To enable this, the doctor sedates the patient with drugs and then introduces a tube called endotracheal tube (ET) tube through the mouth or nose into the windpipe (trachea), a procedure called intubation. Any mucus secretions can be cleared by suctioning out through the ET tube. The tube is connected to the ventilator. If ventilation is likely to be prolonged, the decision may be made to perform a tracheostomy. This is when the doctor makes an opening in the patient’s neck and inserts a tube (smaller than the ET tube) which is then connected to the ventilator.

The tracheostomy is more comfortable for the patient and means that they find it more tolerable. It also means that when the patient is woken, they can communicate more easily. Eventually they will be able to speak with the use of a special valve attached to the tracheostomy. Both the ET and tracheostomy can be easily removed when the patient is better. The hole in the neck from the tracheostomy heals quickly.

How does the patient feel on the ventilator?

The feeling of the tube in the mouth can be uncomfortable. As the tube passes through the vocal cords the patient is unable to speak, which some patients find frustrating. They will not be able to eat or drink, but mouth care and teeth cleaning can be done by the nursing staff. Patients are fed through a tube going into their stomach via their nose. Some discomfort may be felt as air and oxygen blow into the lungs. For the patient’s comfort they are given continuous sedation and pain relief into the vein through a pump. The level of sedation is determined by the treatment purpose.

As the patient improves, the sedation will be weaned off, allowing the patient to take over their own breathing and eventually they will not need the ventilator. At this point the tube will be removed and a simple oxygen mask will be used. The time this can take varies from a few hours to several weeks depending on the severity of their illness.

How is the patient’s progress monitored?

Patients in ICU are constantly monitored to measure heart rate, blood pressure, temperature and oxygen saturations. Other tests include drawing blood to measure oxygen and carbon dioxide levels (blood gases) and blood tests to check kidney function and other body functions. All these blood tests are taken at least once a day. They are reviewed by the nurse at the bedside as well as by medical staff. Ward rounds take place twice as a more formal patient review, but medical staff are in the unit continuously, and the patient has one nurse to care of them at the bedside. This means that the patient can be continuously assessed as to whether they are ready to begin weaning from the ventilator and if they are ready to have the tube removed. As the patient wakes, they are reassured and explanations given about where they are and why.

What risks are associated with ventilation?

Infection is one of the common problems. Although there are ways to reduce the chance of infection, such as mouth care and suctioning the mucus secretions from the lungs the ET tube or tracheostomy can allow germs (bacteria) to enter the lungs, which may cause chest infection. This can delay the patient’s progress and prolong their time on the ventilator. For this reason the staff are keen to wake the patient and wean the ventilation as quickly and safely as possible.

When is sedation stopped?

The doctors may stop sedation altogether or ‘wean’ the drugs slowly. As the patient wakes, the staff can assess how they are progressing and make decisions on reducing the ventilation. Some patients may remain in deep sleep for hours to days after sedation is stopped.

Occasionally a patient may wake up agitated, restless and confused. This may mean the patient is re-sedated and allowed to wake the next day to be assessed again. Staff understand this behaviour is out of character and are there to reassure both the patient and their loved ones. This may take a number of days. Several strategies may also help the patient including relatives talking and updating the patient on their favourite events, reading for them or simply being there. It is fairly common, and will pass.

What is weaning from a ventilator?

Weaning is the process of reducing the ventilator support which may be done quickly or over days to weeks. It is more complex and hard for the patient if they have been on the ventilator for a long time. This process of weaning requires effort from the patient with help from the healthcare team which includes physiotherapists, dieticians, doctors and nurses. Relatives can be a great source of comfort for the patient during this time and can be at the bedside to encourage the patient. All activities require some energy and muscle strength. The physiotherapists draw up a programme of exercises which they do with the patient and nurses. Relatives may also help.

Food is vital to maintain good nutrition and aid recovery. On admission the dietician calculates individual patient requirements and nutrition is maintained by feeding through a tube. Some patients may need intravenous nutrition.

What happens next?

When the medical staff are confident the patient will continue to progress and not require the help of a ventilator again, and the patient has recovering well from any other illness, the process of discharge from the ICU will begin.

This can be an anxious time for the patient and their loved ones, but there is a careful plan made with other healthcare professionals on the wards. Every effort is made to ensure a safe and successful discharge from the unit and eventually home.

Information for patients and relatives following critical illness

This booklet has been written to help prepare you for leaving the intensive care unit (ICU) and to answer some of the questions you and your family may have about your recovery and rehabilitation from critical illness.

Recovery from critical illness

Patients looked after in ICU are very seriously unwell and require life-saving treatment. This is known as critical illness. Some patients stay in ICU for a few days, for some patients this may be much longer. During your ICU stay you will have been looked after 24/7 by a specialist team of doctors, nurses and other staff who care for people who are critically unwell.

The amount of time it takes to recover from critical illness and ‘get back to normal’ is different for each person but can take a long time, sometimes up to a few months. Being ready to leave ICU is therefore an important step in your recovery. Your rehabilitation and recovery journey will continue on the hospital ward and beyond.

Rehabilitation is the process of psychological and physical recovery. This is one of the most important aspects on your road to recovery as it is about what you can do to return to a healthy life after your critical illness.

Leaving ICU

Before leaving ICU, the team will explain to you which ward you are going to and what to expect when you get there. Before leaving the unit you will meet one of our critical care outreach team nurses. They will discuss your recovery plan with staff on the ward you are going to and may also visit you on this ward.

Your recovery plan will include information about your rehabilitation goals and the plan to help you to get back to normal as quickly as possible. Depending on your needs, different members of the intensive care team may be involved in supporting you with this plan including doctors, nurses, physiotherapists, speech and language therapists, occupational therapists and psychologists. 

Information about what happens after ICU

Will I still see staff from the Intensive Care Unit?

Yes. Physiotherapists, speech and language therapists occupational therapists involved in your care will also visit you on your new ward and introduce you to your new therapy team. The intensive care psychology team may also see you on the ward during your hospital stay. This helps to ensure a smooth transfer of your care between staff in the intensive care unit and the ward, and that you are supported with your recovery plan throughout your hospital stay.

Which ward will I move to?

The ward you will move to will depend on the reasons for your stay on intensive care and the ongoing level of support you may need. The doctors, nurses and therapists will hand over your care to the ward consultant and the rest of the team.

Who will look after me on the ward?

On the ward you will continue to be treated by nurses, doctors and other healthcare professionals such as physiotherapists and dieticians. Your team of doctors will not be based on the ward but they will do a ward round once a day. If you do need to see a doctor at other times the ward team will contact them for you.  

Who else will I meet?

Physiotherapist

The intensive care physiotherapist will work closely with the ward physiotherapist to ensure a smooth transition from ICU to ward care. This will also ensure you can continue to work towards the rehabilitation goals you set on ICU. You will have therapy sessions on most days which may involve one or more therapists at the same time.

These sessions will focus on improving your muscle strength and general fitness as well as working towards independent activities such as standing, walking and climbing stairs.

In addition to these rehabilitation sessions you will also be provided with an exercise plan to complete independently.  Even though you are likely to feel tired, low in energy and may still need an oxygen mask it is very important you do your exercises. This will help you to recover as quickly as possible.

Occupational Therapist

An Occupational Therapist may also see you on the ward. The Occupational Therapist will review your ability to perform daily tasks, such as washing and dressing, to make things easier for you. This may include providing adaptive techniques and assistive equipment. The Occupational Therapist will also consider what you may need at home to increase your independence and safety when you are discharged from hospital.

The Occupational Therapists and Physiotherapists work closely together and may see you during the same treatment session. You may also be seen by a therapy assistant, who will help you to complete your rehabilitation program prescribed by your therapists.

Pharmacist

The ICU pharmacist will work closely with the doctors to optimise your medication during your stay in ICU.

You may have been given sedation and analgesia (painkillers) to keep you comfortable. Sometimes patients may experience side effects such as disorientation and vivid hallucinations from these medications. This is entirely normal and you will recover from these. However, if you would like to discuss any concerns about side effects, you can ask to speak to the pharmacist or doctor

When you start to recover, the pharmacist will ask you to provide details of regular medicines that you were on prior to admission. This is to ensure that, when appropriate, your medicines are restarted.

Some of the regular medicines that you normally take at home will be temporarily stopped on ICU as they will not be required at this time. As you recover from the acute phase of illness and are being prepared for discharge from ICU, some of those medications will be gradually reintroduced.

Psychologists

Psychologists work more and more as part of the specialist intensive care teams. Their role is to support patients recovering from critical illness, and their relatives and families, by providing information, advice and practical tips on coping with normal emotional reactions to being critically ill, such as feeling tearful, sad or low in mood as well as common problems experienced like trouble sleeping, or worry about being able to get back to normal, the effect of your illness on getting back to things that you used to do, or about changes in your appearance.

Please check with your team if psychologists are available at your intensive care unit.

Physical rehabilitation and Exercise

Exercise is important after being unwell as it helps you recover from your stay in ICU. It may take some time to get your strength back. The benefits of exercise are:

• Strengthen heart and lungs
• Rebuild muscles
• Reduce stress
• Helps sleep pattern
• Improves movement in joints
• Improves confidence

While in hospital you will continue to work with your physiotherapist to rebuild your strength, balance and function.  You will see them regularly to help achieve your goals and also work independently on your own exercise program that they have given you.

Your physical rehabilitation journey will continue after you discharge and you will be supported as much as possible to achieve your goals and try to return to your normal level of activity.

Will I be able to move around?

The team on the ward will help you to gradually increase the amount of physical activity you do. You may feel very tired at first.

Don’t worry, this is normal and will improve in time.

What if I still need help to get dressed?

You may need help with some personal care such as eating, dressing, washing and perhaps walking.

The healthcare staff will be there to help you and the occupational therapists will work with you to improve your independence with these tasks.

Will I be in pain?

There are many reasons why you may experience pain after your stay in intensive care. This may be as a result of some of the medical procedures you underwent while on the unit, you may have had surgery or have some painful stiff joints after prolonged bed rest.

Please let the nurse or the medical staff know at any time if you are in pain so that they can help ensure you are getting the right pain relief.

There are many forms of pain relief that can help you so please let us know if you have any concerns about your current analgesia.

The hospital’s pain team may also be involved in your care. It is important that your pain is controlled as pain may prevent you from getting moving or being able to breathe deeply and cough. This is very important to prevent chest infections and aid your physical recovery.

The intensive care team psychologists may sometimes work with doctors, nurses and physiotherapists to help patients who are worried about pain or causing further damage and to find ways to increase your confidence about achieving your rehabilitation goals.

When will I be discharged home?

The doctors, nurse, therapists and psychologists will work with you to achieve your goals, so that you can leave hospital as soon as possible.

Sometimes people will need further rehabilitation to reach their full potential. This may happen at home or in another inpatient facility. If this is something you need the team on the ward will discuss this thoroughly with you at the time.

Your GP will receive a summary of your stay in hospital so that they can follow up your care in the community.

When you have been ill, it can take quite a while to get back to feeling your normal self. Exactly how long this will take will depend on the length of time you have been ill, how much your illness has affected your body (for example if you have lost a lot of weight or muscle strength that you will need to rebuild gradually), or whether there are aspects of your lifestyle that you wish to change such as developing healthier eating habits, giving up smoking, reducing alcohol consumption etc. If you have had problems with your health, or with your mental health or addictions before you became critically unwell you may wish to have additional support with these once you are back home as part of your recovery plan..

Common questions about problems experienced after ICU

In this section we are looking at describing some common problems that can occur and give some practical suggestion to help you with these as well as where you can find more support if needed.

Please note:  this does not mean that you will suffer them but that these are the common things that patients who have been critically ill might experience during their recovery in hospital and once they are home.

Tiredness and exercise

I feel weak all the time—­ why?

Don’t be surprised if you feel very tired and weak at first. While you were ill your body took what it needed to survive from its stores in the muscle. This means they will have reduced in size and strength. This muscle loss happens faster for patients who have been on the breathing machine. 

Because of this you may feel tired very quickly even when you are not doing much, you may have difficulty climbing stairs and your balance might not be as good as it used to be. With regular exercise you can regain strength in your muscles and get back to doing all the things you enjoy doing.

Sleeping

I’m finding it hard to sleep— what can I do?

You may find that your sleeping pattern has changed. It may be more difficult to fall asleep or your sleep may be broken. This is normal.

If you are struggling to sleep at any time during your admission please inform someone. There are many ways we can help you with this including getting you one of our sleep well packs that include items that can help you sleep better e.g. eye masks, ear plugs, and helping you to ‘re-set’ usual night/day sleeping patterns where possible e.g. by ensuring natural light in the daytime and reducing noise and lights at night.

Also as you increase your activity you should find your sleep patterns return to normal. Exercise is best done in the morning to help you to sleep.

Using music relaxation exercises, managing stress or worry, or bad dreams that can also help improve sleep.

Common emotional reactions during recovery from critical illness

I’m finding that I feel emotional at times—why?

Many patients recovering from critical illness describe feeling like they are on an ‘emotional rollercoaster’. You may feel hopeful and confident sometimes, and tearful or irritable for no reason other times. This is a normal reaction to illness and will often settle over time.

Being physically weak and having to put a lot of effort into simple things, like dressing or moving around, can make you feel low in mood.  Sometimes it may seem that you will never get back to normal and any progress is very slow. It is common for your mood to fluctuate and you may feel you experience some of the following:

• Feeling upset and tearful
• Always feeling tired
• Being quick-tempered and snappy
• Feeling scared that you almost died
• Worrying about getting ill again
• Worrying about how long it's taking to recover
• Being extra alert to physical bodily symptoms
• Not wanting to do things you used to enjoy
• Not wanting to be around others

While many experience these symptoms in hospital, some may continue to feel this way for some time once they are home. There may be many changes that you have to deal with, such as changes in lifestyle, work, appearance and your role within your family.  Talking with those close to you can be helpful and will help them understand how you are feeling. You may find that setting small realistic goals helps you see the progress you are making and feel better in yourself by giving you a sense of achievement. You may find keeping a diary helps this process. The team looking after you can guide you on what you can expect from yourself at this stage of your recovery.

It is important to be aware of how you are feeling as low mood and worry can slow down your recovery and can develop into problems such as depression and anxiety. Depression and anxiety are health conditions that affect people in different ways and can cause a variety of symptoms, both physical and emotional. These conditions often co-occur and can have a significant effect on your daily life. If you feel anxious or depressed lasting weeks or months, please speak to your GP, who will be able to advise you on different forms of treatment and sources of support in your community.

At the end of this booklet we have also listed websites where you can find more information and support about recovering from critical illness and how to access psychological support.  

I have bad dreams or nightmares about being in ICU— what can I do?

Some patients have bad dreams or even nightmares in ICU that may continue for a few days or even weeks after they have left ICU. The dreams may be pleasant, but can also be frightening or upsetting, as these dreams may seem so vivid that they seem real.

The experience of vivid dreams in ICU is very common. This is often due to ‘delirium’, or, ‘confusion’ due being critically ill (for example, due to infection, kidney or heart failure) or as a side-effect of the strong medications used in ICU (e.g. painkillers or sedatives).

The experience of vivid dreams is usually temporary, lasting a few days to a week, but can be very upsetting for some patients. Worry about bad dreams and can stop patients going to sleep at night, making them more tired in the daytime which affects their recovery. You may benefit from talking about your dreams to family, friends, or a member of staff. 

There a very helpful booklet on delirium written by ICU steps that you can download from the ICU steps website- information about ICU steps is provided at the end of this booklet.

Talking to the ICU doctors and nurses can also help to fill in ‘gaps’ in your memory for what happened, or to answer any questions you might have about your treatment and care in hospital.

I have ‘flashbacks’ or upsetting memories after traumatic events related to being critically unwell

Some patients may have experienced traumatic events relating to their experience of becoming critically unwell. For example, they may have had a serious accident, suddenly become unwell due to a serious illness or infection or had complications during surgery or labour.

In the days or weeks following stressful or traumatic events it is completely usual to experience flashbacks or upsetting memories, and to feel upset, tearful or scared.  About one in four people will experience traumatic stress reactions of this kind following a very stressful or traumatic experience

In most cases, memories of traumatic events will gradually ‘fade’. Talking through your experiences can help with or making sense of (processing) these.

Sometimes people prefer to talk to one or two people who are close to them or to a health care professional or psychologist who are trained to know how to support people who have experienced traumatic events.

It is okay to tell people if you don’t want everyone to ask you about your experiences, if talking about these is upsetting and makes you feel like you are ‘reliving’ these all over again. It can sometimes be helpful to prepare a short ‘script’ to tell people so they know how best to support you. For example, ‘ I really appreciate that you have asked about what happened, I was very ill and am not ready to talk about everything that happened yet as I need to focus on my recovery. I have great support from the hospital team. Is ok if I let you know when I am ready to talk?’

Things you can do if you experience flashbacks or bad dreams:

• Remind yourself that these experiences happened in the past, and that you are safe now
• Calm your breathing by slow deep breaths in while counting to 5, then breathing out slowly while counting to 5
• Focus on something neutral in the room (a painting, the view from the window etc). Try to describe it to yourself in as much detail as possible (what colours/textures/patterns/images do you see)

Do I have PTSD?

Post-traumatic stress disorder (PTSD) is a mental health condition that can occur after traumatic events such as a life-threatening illness. PTSD symptoms include:

• re-experiencing the trauma through vivid and distressing memories or dreams
• avoiding situations that remind them of the traumatic event
• feeling emotionally numb or ‘detached’ as if the event happened to someone else
• feeling  on ‘ constant alert' - watching out for new danger

It is important to remember that many of these symptoms get better in time with support from family and friends. It is important to talk to your GP and seek help if these symptoms are troubling you, however.

Useful information about PTSD and how to access help is provided at the end of this leaflet.

I’m feeling guilty—why?

Some survivors of critical illness experience guilt and worry about the impact that their ICU stay has had on friends and family.

It is important to be open with one another and discuss your thoughts and feelings. You have all experienced critical illness from different perspectives and there is no need to feel guilt.

Some patients find it helpful to talk to others who have had similar experiences. The ICU steps charity runs online forums and support groups for patients (see contact details at end of this booklet). Patients may also wish to attend one of the ‘focus groups’ the ICU team run for patients and relatives once they are back home. Please contact the ICU team for more information about these.

I look different—why?

You may experience some changes in your appearance, for example, hair loss or weight loss. These are quite common after critical illness but improve as you continue to recover.

The skin on your hands and feet may become dry and shed. These changes are temporary. Moisturising your skin regularly can help to stop this.

Your nails may develop ridges where the nail has stopped growing when you are ill and restarts again when you are recovering. This ridge will grow out with time.

You may have some scars from surgery or drips. Scars can sometimes be treated with massage and laser surgery. Your GP can help with this.

Memory Problems

I do not remember my stay on the ICU—why?

Some patients leaving the ICU may have little or no memory of being on the Unit. Asking, your family and friends about what happened can help to ‘fill in the gaps’. 

The ICU team can provide you with information about what happened to you during your ICU stay, the nurses who looked after in you in ICU may also have kept a diary to help with this. Patient diaries are usually kept for patients who have been on a ventilator and sedated for more than 48 hours.

We can be contacted at any time to answer any questions you may have via our Virtual intensive care email address. 

I am having trouble with forgetfulness or concentration

During your recovery you may also have trouble with short term memory, confusion and difficulties concentrating. This can be due to the medication you may have received while in the ICU. Asking a friend or relative to keep a note of any important information or questions you have about your illness or treatment can help during your stay. In most cases this should also improve with time.  If they do not improve within a few months, please speak to your GP to ask to be referred to have these problems assessed.

Patients who have had strokes or brain injuries may experience longer-term problems with memory, concentration or problem-solving. You may be offered assessment or rehabilitation to help with these by a specialist team during your hospital stay or once you get home.

Speaking and eating

Why has my voice changed?

You may find your voice has become husky or very weak. This is probably because you have had a tube inserted into your windpipe to help you with your breathing.

This may irritate the throat and vocal cords making it difficult to swallow and talk. In time this should improve. However if you are having problems with your speech and swallowing the speech and language therapist will work with you to help improve this.

Food tastes different—why is this?

Getting better depends on eating well. It is very likely that you were fed through a tube into your stomach or via a drip into your vein while you were on ICU

As a result of this, you may find that you have lost your appetite, your mouth may be sore and food doesn’t taste the same. It may taste metallic, saltier or sweeter than usual.

It is important to remember that this is only temporary and it is best to concentrate on foods that you do like and leave the ones that don’t appeal to you for now. You can try them later on when your taste is back to normal.

You may find it easier to eat small meals and have nourishing snacks in between if you get hungry. Remember “little & often”, and have 5–6 small meals or snacks, rather than 2–3 larger meals. Choose nutritious drinks such as milk and do not fill up on tea or coffee. Remember that drinking before a meal can fill you up. You can see a dietician for more help with this. You can also ask relatives or friends to bring in food from home that you normally enjoy.

Take your time, eat slowly and relax afterwards. If you’ve lost interest in food think of a food where the smell or sight of it usually makes you look forward to tasting it, then try a small portion

If you’re still struggling to eat and drink enough when you leave ICU a dietician can come and see you on the ward. If you need help to eat and drink - please ask your friends, family or nursing staff to help you.

I find I am sometimes passing small amounts of urine before I get to the toilet— when will I be able to go to the toilet normally?

Many patients with critical illness require long periods of bed rest and urinary catheterisation (this is where a tube is used to collect urine from the bladder).

Long term use of a catheter can lead to urinary incontinence—ie the loss of urine without being able to control it.

This is because the muscles and signals that control your bladder become weak from not being used.

Symptoms may include increased frequency, which is the need to urinate too often during the day or stress incontinence which is the leakage of urine with effort (jumping, sneezing or coughing).

This incontinence may improve as you get stronger and begin to move around more but pelvic floor exercises may also help.

If you are still concerned about this you can ask for advice from your physiotherapist or ask your GP for specialist advice from a specialist physiotherapist.

I would like to resume my sexual relationship with my partner—will my illness affect this?

It's normal to be worried about when it's safe to start having sex again. Your partner is likely to be worried about this too.

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.

Most people find it difficult to talk about sex, but try to relax and keep a sense of humour. Take things slowly and see what happens.

Sometimes, medical problems such as impotence also can affect your sex life. If you're worried, talk to your GP.

Support

Sometimes as a patient or carer you need to talk to someone who has been through the same experience as you. This makes you feel less isolated and gives you hope that what you are experiencing is normal and will get better. In this section we identify what we do on the unit and also give a list of useful contacts.

Follow up by the ICU Team

The ICU team can arrange for you to have a follow up appointment or telephone call with one of the doctors or nurses who was involved in your care This can be helpful if you feel you would like more information about any aspect of your medical treatment in ICU. One of the ICU nurses who looked after you may also contact you once you leave ICU to offer to go through a diary of your stay.

If your team includes psychologists, you may also be contacted and asked to fill in some questionnaires about how you are feeling emotionally once you are back home as well as other problems you may be experiencing such as sleep problems, or forgetfulness. The psychologist may then provide you with further information about how to access any further help or support you may need.

ICU focus groups

We have been facilitating focus groups on the ICU since 2005. The focus group, which runs at least twice a year, are made up of 5–8 former patients and relatives/ friends who have been on Chelsea and Westminster ICU.

The purpose of the groups is to gain an insight into the experience they have had while in our care. This helps to identify areas where we can improve our service.

The focus groups are also a way of letting patients and relatives tell their story to each other and a way of helping them understand what they have been through.

Useful contacts

ICU Chelsea and Westminster: 02033158518

ICU West Middlesex: 02083215834

Here are a number of self-help groups and support groups in the community that you and your family may find useful once you have left hospital.

Some of the information in this booklet was taken from the booklet Intensive Care: A guide for patients and relatives.

ICU steps is the UK's only charity dedicated to providing information and support to patients recovering from critical illness during their long recovery.

There is lots of other useful information for patients and their families on this website.

Asthma UK

A charity dedicated to improving the health and wellbeing of people in the UK whose lives are affected by asthma.

Helpline: 0300 222 5800

Website 

British Heart Foundation

A charity that gives information and support on the health of your heart.

Helpline: 0300 330 3311

Website

British Association for Counselling and Psychotherapy

For details of counsellors and psychotherapists in your area.

Phone: 01455 883300

Website

Carers Trust

Carers Trust is the largest provider of support services for carers in the UK.

Helpline: 0300 772 9600

Website

Citizens Advice

The Citizens Advice service helps people deal with their legal, money and other problems by providing free, independent and confidential advice.

Helpline: 03444 111 444

Website

Critical Care Recovery

A website created by researchers, patients, family members, health care staff based on over 120 interviews with former Intensive Care patients and family members at different stages of recovery.

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Diabetes UK

The largest charity in the UK for the care and treatment of people with diabetes.

Helpline: 0345 123 2399

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Healthtalk

A helpful website covering a wide variety of personal experiences of health and illness. It includes video interviews of people who have been through different illnesses and includes sections for intensive care patients and their relatives.

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Stroke Association

An organisation that provides support and information on strokes and guidance on coping with life after a stroke.

Helpline: 0303 303 3100

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UK Sepsis Trust

The Trust promotes awareness of sepsis, and provides support to those affected by it.

Helpline: 0800 389 6255

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Emotional and mental health support

Psychological therapies, also known as ‘talking therapies’, are free on the NHS and can be accessed from your local community mental health service. You can be referred by your GP or many services accept self-referrals. Check the NHS website to locate your nearest service.

Mind is a national mental health charity which provides advice and support to people experiencing mental health problems. On their website there is lots of useful information on mental health problems such as depression, anxiety and PTSD, including how to access help and support.

How to get help in a crisis or emergency

If you feel like you might attempt suicide, or may have seriously harmed yourself, you need urgent medical help. Please:

• call 999 for an ambulance
• go straight to A&E, if you can

If you can keep yourself safe for a short while, but you still need urgent advice:

• contact NHS 111 if you live in England
• contact NHS 111 or NHS Direct (0845 46 47)

Samaritans provides confidential, emotional support, 24 hours a day, for people who feel distressed, desperate or suicidal. Helpline: 116 123

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