Moving on from the Intensive Care Unit

Moving on from the Intensive Care Unit

Introduction

Following your stay on Intensive Care you will begin your recovery.
This can be a difficult time for you and your family. This booklet is
designed to help you understand some of the common problems
that occur following critical illness. You may not experience any of
the problems we describe, but the longer your stay on the Intensive
Care Unit the more likely they are to occur.

Please remember that recovery can be a long and slow process
and that it might be helpful to think about it in terms of months
rather than weeks. It is usual to have good and bad days and to
feel frustrated. The length of time it takes to recover will depend on
many things including: how long you have been ill and how much
weight you have lost.

You will probably feel exhausted and tire easily. This is normal;
your muscles have been doing very little for a while and need time
to build up their strength. The Physiotherapists will continue to
support you in your rehabilitation. You will need to find ways to
keep motivated and focusing on better times ahead can be helpful.

Leaving Intensive Care

Although you may feel apprehensive about leaving the Intensive
Care Unit, it is a really significant step in your journey to recovery.
The decision to leave the unit is made by the Intensive Care
Consultant in consultation with the rest of the team and the medical
or surgical team who share responsibility for your care.

The Critical Care Outreach Team (experienced Intensive care
nurses) will be made aware of your transfer and will review you
before you leave the unit to ensure a good handover of your care
between the Intensive Care Unit and the ward.

We know from our patients that one of the things they find most
daunting is the change in the number of nurses that are visible on
the ward. Please be reassured that the reduction in nursing staff is
because you are ready to do more for yourself and become more
independent. You will still be allocated a nurse, but they will have a
greater number of patients to look after. You will have a call bell to
use should you need attention.

Within 24 hours of your discharge to the ward a member of the
Critical Care Outreach Team will come and assess you to see how
you are feeling and to ensure that everything is okay

During the first few days on the ward you might feel a bit strange or
out of sorts whilst you adjust to the transition. Try to be positive and
remember that you are at the heart of all we do.

It might seem unkind to keep pushing you to be more independent
but we are trying to get you back to being as healthy as you can
be.

A patient diary may have been kept for you on the unit; the nurses,
doctors and perhaps your family and friends will have had the
opportunity to write in it. Reading the diary may help you to
understand what you have been through. It can be emotive, as it is
so personal to you. It can be helpful to read the diary with a loved
one and to talk through some of the things that may have
happened to you when you feel ready.

If you have any concerns you can ask to speak to the
Physiotherapist or the Critical Care Outreach Team.

Returning Home

As with your discharge from Intensive Care, you will have been
assessed thoroughly to ensure all of the things that you may need
are in place. You are likely to experience mixed emotions about
returning home and although the rate of your progress may
sometimes be frustrating this is a major step in your recovery.

When you have been critically unwell even simple tasks can seem
exhausting. You will get there, but please remember it can be a
long and slow process. Keep doing the exercises the
Physiotherapist has given to you. Some patients find it useful to
keep a diary during this time.

Try setting yourself small, realistic tasks within your daily and
weekly routine-to start with this could be as simple as making a cup
of tea.

Once you are discharged home your GP will become involved with
your care and recovery, so if you experience any problems please
make an appointment to see them.

During your stay there may have been changes to your medication,
your GP will have received a discharge letter from the Intensive
Care Unit so they should be aware of what has happened and will
be able to discuss this with you.

Nutrition

You might experience poor appetite, swallowing difficulties, taste
changes and weight loss. These are normal following critical
illness. We have dietary advice sheets available. The rule of thumb
is “little and often”, most patients find a full plate of food very
daunting. Loved ones often want to feed you up, and whilst their
intentions are good this can have the opposite effect.

Sleeping

Sleep is a very important part of your healing process, and many
patients who attend our Intensive Care Follow-Up Clinic tell us their
sleep pattern has changed; they find it difficult to fall asleep, have
disturbed sleep or just don’t feel rested when they rise in the
morning.

Despite best efforts, the Intensive Care Unit is often a very noisy
place to be, and very difficult for you to get good natural sleep. This
can affect your internal ‘body clock’ and when prolonged can lead
to sleep deprivation, confusion and disorientation. Just being ill and
having to take certain medications can add to this problem and can
lead to a delayed recovery. Disturbed sleep patterns may have led
to you needing to sleep during the day or waking and remaining
awake for the rest of the night.

The normal patterns of sleep take time to return, so when you
finally get home, try not to worry too much – most patients find this
improves over time. You should find that as you become more
active in the day your sleep pattern will improve.

Being awake at night can be worrying, especially when you have
been unwell. It is normal for post critical care patients to have these
problems. If you still have problems, discuss them with your GP or
come and talk to us at the Intensive Care Follow Up Clinic.

Body Image

Since being in hospital, you may have noticed changes in your
appearance. You may have lost weight and muscle bulk, both of
which may change the way you look. Some patients get a degree
of hair loss, change in hair quality or suffer from dry skin.

These problems are normally a result of being critically ill and not
being able to have a normal diet.

These changes are almost always temporary and will improve over
time. However, if you are concerned you should seek advice from
your GP or the Intensive Care Follow Up Clinic.

You may also have some scars. Some of these will be from
intravenous drips or drains. Others could be from having had an
operation or suffering trauma to the body.

The appearance of scars can improve over time. It can take a while
to get used to the changes in your appearance. If scars continue to
bother or worry you, you can seek advice from your GP.

Stoma

Many Intensive Care patients are admitted for post-operative care.
Some bowel or bladder cancer patients’ are booked for planned
surgery and therefore prepared for the possible outcomes which
may include the placement of a stoma or ‘bag’. However, many
patients require emergency bowel surgery and in some extreme
cases those patients may not be well enough to understand what
may happen to them.

For anyone the days after stoma surgery can be challenging. You
have a pouch attached to your abdomen and lots of new things to
learn. It’s important to remember that it takes time to adjust, but it
will get easier. With support from your stoma care nurse and
practical guidance on how to change your ostomy pouch and care
for your skin, you should soon be able to do the things you’ve
always done.

If you are finding caring for your stoma a challenge, you can
discuss this with the stoma specialist nurses.

Tracheostomy

Some patients in Intensive Care have undergone a procedure
called a tracheostomy. This is where a tube is placed into the
windpipe (in the neck) through the skin. This helps patients to
breathe and be more comfortable when being weaned from a
ventilator (breathing machine). It will leave a wound in the throat,
but this will heal to form a small scar and should not cause further
problems.

If you have had a tracheostomy and have problems such as
redness, itching and/or discharge from the site, the wound not
healing, difficulty swallowing or narrowing of your airway, you must
seek help from your GP who may feel it necessary to refer you to
an Ear Nose and Throat Specialist (ENT).

Voice
You may find that your voice has changed because of having a
tube in your windpipe. You may get hoarse when talking, or your
voice may weaken over the course of the day. This should improve
a few weeks after discharge from hospital. If it doesn’t, discuss it
with your GP or at the Intensive Care Follow up Clinic. It may be
necessary to ask for an earlier clinic appointment.

Mood
Following a period of critical illness it normal to experience
fluctuations in mood. Patients often report having good days and
the next day feeling very low. You may also lose interest in things
that would normally find interesting. You might feel more irritable,
frustrated and find it difficult to concentrate.

Please be reassured that this is normal and that mood should
stabilise over time. Remember recovery from critical illness can be
a protracted process, but also that it is individual to you so you
shouldn’t measure your recovery against anybody else.

Post Traumatic Stress Disorder
Some patients experience symptoms of persistent stress or anxiety
following severe illness and intensive care treatment. These
symptoms of ‘Post-Traumatic Stress Disorder’ (PTSD) include
irritability, loss of concentration and memory lapses, low mood,
withdrawal, disturbed sleep, nightmares, and flash-backs, being
jumpy or having negative feelings about the future. You may
experience some or all of these symptoms, but most find that the
symptoms improve after a few weeks.

PTSD is when the symptoms described above are more severe
and become overpowering. Perhaps the most worrying part of
having PTSD is that frightening memories may flood and distract
your mind without warning and when you are least prepared.

Some memories are mental pictures of very distressing events that
upset you (intrusive memories).

They might only last a few seconds, and simply be re-occurrences
of your intensive care experience, but these flashbacks can feel
unbearable to some and may cause physical feelings, such as
palpitations.

Over time these memories should become less vivid and gradually
fade away. The other symptoms of post-traumatic stress should
also bother you less.

If you find that the symptoms continue, are severe, or if you would
like to discuss them, it is important that you seek professional help.
Your GP can refer you to an appropriate service to help you.

Counselling has been shown to be of great benefit in these
circumstances (see also the ‘Help lines’ section at the end of this
booklet). You can also contact the Intensive Care Follow Up Clinic
for more advice.

Families and Relationships

Supporting a relative or friend through a period of critical illness can
be a worrying and stressful time. Although their experience will be
very different to yours, coping and coming to terms with your illness
will take time

You might find that they are over protective because they are
worried about you. It is usually helpful to keep talking to each other.

Most people find it difficult to talk about sex. Following critical
illness you may be concerned about resuming your usual sexual
relationship for lots of reasons. If you are worried seek advice from
your GP.

Employment, Hobbies and Socialising

If you worked before becoming unwell you might find that your
circumstances have changed after such severe illness. Many
patients begin with a phased return to work; this may be worth
discussing with your employer. The Occupational Therapist in the
Intensive Care Follow Up Clinic will be able to advise you on this
and give advice regarding financial concerns.

It is normal to find socialising more difficult after critical illness but
hopefully given time you will feel confident to go out and enjoy the
hobbies and activities that you used to.

Intensive Care follow up clinic

You may be offered a clinic appointment depending upon the
duration of your stay on the Intensive Care Unit. The clinic is run
once a month. An Intensive Care Consultant and a Critical Care
Outreach nurse will talk to you about any psychological issues you
may be experiencing and give you the opportunity to ask anything
about your stay on the Intensive Care Unit.

There will also be a Physiotherapist and Occupational Therapist to
help you with any physical or mobility issues.

During your attendance to the Intensive Care Follow up clinic it
may be suggested to you that attending the Intensive Care Support
group could be beneficial to your recovery, an invite to the group
would then be sent to you directly.

If we cannot help directly we can signpost you to the appropriate
service or department, or liaise with your GP.

HELP LINES AND INTERNET SITES

NHS Direct
0845 46 47
www.nhsdirect.nhs.uk

Patient Health Information
www.patient.co.uk

British Heart Foundation
020 7554 0000
www.bhf.org.uk

Diabetes UK
0845 120 2960
www.diabetes.org.uk

Asthma UK
0800 121 6244
www.asthma.org.uk

NHS Smoking Helpline
0800 022 4332
www.smokefreenhs.uk.co.uk

British Association for Counselling and Psychotherapy
01455 883300
www.bacp.co.uk

British Psychological Society
0116 254 9568
www.bps.org.uk

Oxford Cognitive Therapy Centre
01865 738 816
www.octc.co.uk

Samaritans
08457 90 90 90
www.samaritans.org.uk

Cruse Bereavement Care
0844 477 9400
www.crusebereavementcare.org.uk

Age UK
0800 169 8787
www.ageuk.org.uk

Alcoholics Anonymous
0845 769 7555
www.alcoholics-anonymous.org.uk

Terence Higgins Trust (HIV/AIDS)
0808 802 1221
www.tht.org.uk

Carers UK
020 7378 4999
www.carersuk.org

Princess Royal Trust for Carers or Carers Trust
0844 800 4361
www.carers.org

Cancer Care
020 7242 0200
www.cancerresearchuk.org

Marie Curie Cancer Trust
0800 716 146
www.mariecurie.org.uk

Macmillan Cancer Support
020 7840 7840
www.macmillan.org.uk

Shelter Line (housing and homelessness)
0808 800 4444
www.shelter.org.uk

Disabled Living Foundation
0845 130 9177
www.dlf.org.uk

Telephone Helplines Association
020 7089 6321
www.helplines.org.uk

National Drugs Helpline
0800 77 66 00
www.talktofrank.com

Headway
A charity that supports people with brain injury and the people who
care for them.
0808 800 2244
www.headway.org.uk

ICU Steps

A registered charity run by ex-intensive care patients, relatives and
ICU staff to support patients and families through the long road to
recovery from critical illness.
www.ICUsteps.org.uk

Healthtalkonline

A website covering a variety of personal experiences of health and
illness. It includes sections for critical care patients and their
relatives.
www.healthtalkonline.org

Lee Spark NF Foundation

This is a charity and support group for people who have been
affected by severe streptococcal infections or necrotising fasciitis (a
rare and serious infection that causes skin and the tissues beneath
it to die).
01254 87 87 01
www.nfsuk.org.uk

If your symptoms or condition worsens, or if you are
concerned about anything, please call your GP, 111, or 999.

Patient Experience

We know that being admitted to hospital can be a difficult and unsettling time for
you and your loved ones. If you have any questions or concerns, please do
speak with a member of staff on the ward or in the relevant department who will
do their best to answer your questions and reassure you.

Feedback

Feedback is really important and useful to us – it can tell us where we are
working well and where improvements can be made. There are lots of ways you
can share your experience with us including completing our Friends and Family
Test – cards are available and can be posted on all wards, departments and
clinics at our hospitals. We value your comments and feedback and thank you
for taking the time to share this with us

Patient Advice and Liaison Service (PALS)

ou have any concerns or questions about your care, we advise you to talk
with the nurse in charge or the department manager in the first instance as they
are best placed to answer any questions or resolve concerns quickly. If the
relevant member of staff is unable to help resolve your concern, you can contact
the PALS Team. We offer informal help, advice or support about any aspect of
hospital services & experiences.

Our PALS team will liaise with the various departments in our hospitals on your
behalf, if you feel unable to do so, to resolve your problems and where
appropriate refer to outside help.

If you are still unhappy you can contact the Complaints Department, who can
investigate your concerns. You can make a complaint orally, electronically or in
writing and we can advise and guide you through the complaints procedure.

How to contact PALS:

Telephone Patient Services: 0300 123 1732 or via email at:
wah-tr.PET@nhs.net

Opening times:

The PALS telephone lines are open Monday to Thursday from 8.30am to
4.30pm and Friday: 8.30am to 4.00pm. Please be aware that a voicemail service
is in use at busy times, but messages will be returned as quickly as possible.

If you are unable to understand this leaflet, please communicate with a member
of staff.

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