COPD - Derby Hospitals NHS Foundation Trust

Living with COPD
A practical guide to understanding
Chronic Obstructive Pulmonary Disease (COPD),
treatment and lifestyle choices
About this guide
This guide includes
information which will help
you to understand your
chronic respiratory condition.
It will also help you to learn
how to control your
symptoms so that you can
manage your condition
better and have an improved
quality of life.
The information in this guide
has been written by
specialists in respiratory
care.
Your healthcare professional
may help you to work
through this guide so that the
information in it is personal
to you. The details that are
filled in will not only be useful
to you, but to healthcare
professionals involved in
your care.
You should speak with your
healthcare professional
before you do anything
different from the advice they
have given you.
It is not meant to replace
face to face contact with
your healthcare professional
or any of the advice they
give you.
You may also choose to
share this with your family
and friends so that they can
help you and learn to
understand about your
condition too.
Helpful tip
If you have any questions
while you are using this
guide speak to your
healthcare professional as
they will be able to help you.
My information
In this section there is:

Your details

Your medical record

Useful contacts

Appointments planner
My details
Medical details
NHS number (if known):
_________________________________________________
GP name:
_________________________________________________
GP number:
_________________________________________________
Hospital consultant name:
_________________________________________________
Nurse/physiotherapist name:
_________________________________________________
Respiratory team number:
_________________________________________________
My medical record
The health problems I
have are:
The date I was
diagnosed was:
The treatment I am
having is:
You can use this page to record your medical information
such as other health problems and any allergies you may
have.
My useful contacts
You can use this to record telephone numbers that will be
useful to you.
Name
Telephone number
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The British Lung Foundation
Helpline: 03000 030 555, Monday to Friday, 9am - 5pm
www.blf.org.uk
Email: [email protected]
My appointments planner
You can use this planner to record when your medical
appointments are.
Appointment
Date
Time
_______________________
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About COPD
In this section there is information on:

What is COPD?

The causes and symptoms of COPD

Diagnosis

Exacerbations (flare ups) and exacerbation
record

Self management

Better breathing

Chest clearance exercises

Going into hospital
What is COPD?
Chronic Obstructive
Pulmonary Disease (COPD)
is a medical condition where
people have difficulty
breathing because of long
term damage to the lungs.
Pulmonary refers to the
lungs and includes all the
tubes that take air from the
nose and mouth into your
lungs.
Chronic means long-lasting.
It has nothing to do with how
serious the disease is, it
simply means that the illness
is not short term.
These include the windpipe
(trachea), 2 main bronchi
(one supplies the right lung
and the other the left), lots of
smaller branches
(bronchioles) and finally the
tiny air sacs (alveoli).
Obstructive means
blocking.
Disease means illness and
tells us that all is not well.
In COPD, due to repeated
exposure of harmful
substances the airways can
become damaged which can
result in inflammation, airway
narrowing and an increase in
the production of mucus.
The damage to the lungs in
COPD is permanent and
cannot be repaired.
This means that airflow in
and out of the lungs
becomes more difficult. This
is usually more obvious
when breathing out.
Effective diagnosis and
management is important to
prevent further problems and
maintain lung function.
COPD can be classed as
mild, moderate, severe or
very severe based on lung
function measurements.
The causes and symptoms of COPD
What are the causes of
COPD?
Smoking is a major cause of
COPD. Smokers who suffer
from COPD have lungs
which are more sensitive to
the harmful effects of the
cigarette smoke.
Other factors such as what
people do for a living and
family history can also be
causes of COPD.
What are the common
symptoms?
Symptoms of COPD often
develop over many years.
You may notice that you
have been unable to do as
much activity as normal
without getting short of
breath and are troubled by
more chest infections.
The symptoms most
commonly experienced by
people with COPD are:
Breathlessness
This is due to a narrowing of
the airways. The airways
have a muscle layer that
helps to keep them open but
this is often damaged due to
long lasting exposure to
harmful substances. This
results in the airways
narrowing making it difficult
to get the air in and out.
The lining of the airways can
often become inflamed,
possibly due to infection or
something that has irritated
them. This will lead to further
narrowing with the
breathlessness getting
worse.
Sputum
The airways in your lungs
produce secretions to keep
them moist and to remove
small particles of dust that
you breathe in.
Some people with COPD
produce too much sputum
(phlegm). This is because
irritation of the airways may
cause mucous glands to
become enlarged and
become more productive.
People with COPD also
often tend to breathe through
their mouth to try to get more
air into the lungs. When they
breathe this way, the nose is
unable to filter and remove
solid particles from the air
before it reaches the lungs,
causing further airway
irritation.
Useful information
If you would like to learn
more about COPD turn to
the lifestyle
management section to find
out more.
Cough
The airways in your lungs
have millions of tiny hairs
called ‘cilia’ which waft the
sputum up to the back of the
throat where it is normally
swallowed.
Smoking damages these
hairs and reduces the lung’s
ability to clear sputum.
Diagnosis
Your GP may ask you a
number of questions to find
out if you have COPD.
These could include:

What symptoms have
you got?

How long have you had
them?

How far can you walk
without getting short of
breath?

Do you smoke now or
have you smoked in the
past?

How many years did
you smoke for?

What is/was your
occupation?

Have you ever had any
medication that
helped?

Are you prone to chest
infections?
Your GP may send you for
an x-ray of your chest.
The best way to find out
what is happening in your
lungs is to send you for
some lung function tests.
This is where you blow into a
machine called a spirometer.
This will help the doctor to
see how well your lungs are
working.
Using a spirometer
You may also be referred to
a consultant at the hospital
for breathing tests if they are
not available at your GP
surgery.
Once a correct diagnosis
has been made you will then
be given the correct
medication and advice.
Exacerbations (flare ups)
When you have COPD there
will be times when you have
an increase or flare up of
your symptoms, such as
increased breathlessness,
making daily activities
difficult.
Healthcare professionals
may call these
exacerbations.
It is very important when you
have COPD to recognise the
signs and symptoms of an
exacerbation and start the
right medication as soon as
possible.
Important!
Remember to inform your
GP surgery if you start
steroids and/or antibiotics.
If you feel no better after
48 hours seek medical
advice.
Common symptoms during
exacerbations are:

Increasing shortness of
breath

Increasing quantities of
sputum/phlegm

Sputum/phlegm
becoming persistently
more discoloured than
normal
Follow your respiratory
action plan when dealing
with these symptoms.
On the next page there is a
place for you to record any
exacerbations that you have.
Date
No
No
No
No
No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
No
No
No
No
No
No
No
Rescue
steroids
used
Rescue
Name of
antibiotics antibiotics
used
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
Supported Admission Number of
at home to hospital
days in
by nurses
hospital
Recording your exacerbations can help to plan your future care.
Exacerbation (flare up) record
Self management
Understanding and
controlling your symptoms is
an important part in
managing COPD.
Your healthcare professional
will be able to give you
individual advice on how to
control your symptoms.
If you can control your
symptoms it will help you to
feel more in charge of your
condition.
There are different ways in
which you can control your
symptoms, these include:

Learning about your
condition

Knowing what your
normal symptoms are
and learning to
recognise when they
are changing

Knowing what to do if
your symptoms change
and what works for you

Knowing when to get
help

Not forgetting to take
your medication
Helpful tip
Your respiratory action
plan will help you to
recognise when your
symptoms are changing and
what action you need to
take.
Better breathing
Breathing control
This section covers the
general principles of
breathing control, but you
may be referred to a
physiotherapist for help and
more specialist advice.
Learning about your
breathing and how to have
some control over it helps
you to identify when a
breathlessness attack is
going to happen and what to
do about it.
Being breathless is a
frightening feeling.
Fear and anxiety can
sometimes cause
breathlessness, setting up a
vicious cycle. With practise
you should be able to break
that cycle and work through
attacks of breathlessness,
returning your breathing to
normal in a controlled way.
The main muscle that is
used in breathing is the
diaphragm. This is a large,
dome shaped muscle that is
attached to your ribs
underneath your lungs.
Using the diaphragm is the
most efficient and relaxing
way to breathe. It usually
does the majority of the work
during resting breathing.
In COPD the diaphragm may
become less effective in the
way that it works and other
muscles of the upper chest
with take over. These
muscles require more
oxygen to do the same job
and so the work of breathing
becomes more tiring.
Breathing using the
diaphragm (gentle breathing)
helps you to make the most
of your available lung
capacity.
For some people with COPD
the pattern of breathing
alters and the diaphragm
breathing technique may
need to be changed. Your
physiotherapist will be able
to help you with this.
Instructions for breathing control
1. Settle yourself in a comfortable and relaxed position,
making sure your back and shoulders are well supported
2. Place your hand on the lower part of your chest at the front
3. Breathe in slowly and gently through your nose
4. As you breathe in feel your hand move away from you (as if
a balloon is inflating under your hand)
5. As you breathe out through your nose or mouth, feel your
hand return to its starting position (as if the balloon is
deflating)
6. You should feel a slight pause before you start your next
breath in - this is called an end expiratory pause
Breathlessness
Controlling your breathing is
an important part of
managing COPD.
It takes time and practise to
learn how to get used to
better breathing.
To help with breathlessness during activity
Try and pace yourself when you are doing something that
makes you short of breath and practise your breathing control
during rests.
Try not to hold your breath when you are doing activities as
this will make you breathe more quickly afterwards to make
up for it.
When doing everyday activities or exercise you will find it
easier to breathe out on the ‘effort’ part of the movement.
Don’t try to talk too quickly especially when you are talking on
the telephone. Pace your speech as well as your activities.
Try different sitting and standing positions to ease
breathlessness. Many people find leaning forward to sit and
stand, resting the forearms and relaxing the shoulders can be
helpful.
Chest clearance exercises
These exercises will help you to clear sputum/phlegm from
your chest.
Alternate exercises 1 and 2 below until you have loosened
the sputum. Only when the sputum is loose proceed to
exercise 3.
Exercise 1

With relaxed shoulders place your hand on the lower
part of your chest at the front and breathe in gently
through your nose

As you breathe in, feel your hand move away from you.
On breathing out you should feel your hand return to its
resting position

You should feel a slight pause before you start your
next breath in

Aim to do at least 6 of these breaths
Exercise 2

Take a long, slow deep breath in through your nose,
hold for 3 seconds, then sigh the air out slowly through
your mouth

Repeat 3 times

Try to keep your shoulders relaxed whilst taking your
deep breaths

Try not to cough during these exercises
Exercise 3 (huffing)

Take a steady breath in

With your jaw relaxed and mouth open blow warm air
out quickly onto your hand (as if you are trying to steam
up a mirror)

No more than 2 huffs together is advised to stop you
from feeling dizzy and to avoid bouts of wheezing and
coughing

Only cough if you have loose sputum which has not
cleared with a huff (exercise 3)

Inappropriate and excessive coughing can be
counterproductive

If your chest still feels congested restart the cycle with
exercises 1 and 2 and continue until you feel that it is
clear
Going into hospital
It is important to take all
relevant information about
your COPD and current
medication with you
whenever you go to hospital,
either as an inpatient or
outpatient.
Taking this guide and your
respiratory action plan with
you will help healthcare
professionals to know more
about the medication you
take and the care you have
been receiving by different
people - remembering to
keep it up to date and taking
it with you will help everyone
involved in your care.
Medication
Take your usual supply of
medication with you when
you go into hospital as they
may not routinely stock your
medication.
Ask staff on the wards to
write down the times when
you should take your
medicine as part of your care
plan.
Always ask if you are unsure
about anything to do with
your medication.
Benefits
Depending on how long you
are in hospital for may affect
your benefits.
Contact the Department for
Work and Pensions for more
information and advice on
what to do about your
benefits while you are in
hospital.
Discharge planning
Plans for discharge may
start as soon as you are
admitted to ensure that
everything is in place for
when you get home. Follow
up care may include visits
from community nurses as
well as outpatient
appointments.
If you have been struggling
to manage at home before
your admission and feel you
may need more help or
support, discuss your
concerns with the ward staff.
Non-Invasive Ventilation
If you are very breathless
and tired and your
respiratory muscles are not
working properly your
hospital doctor may decide
to put you on a short course
of Non-Invasive Ventilation
(NIV).
NIV is a way of helping you
to breathe using a machine
attached to a tight fitting
mask which you wear over
your face.
It is not the same as a
nebuliser and is only used
when you are having an
exacerbation (flare up) of
your chronic lung condition,
which has not responded to
less invasive treatments
methods. Not all people will
require this treatment.
You may need to wear the
mask as much as possible
for the first 24 hours.
It can be removed for short
periods to allow you to eat,
drink and take your
medication.
After the first 24 hours your
doctor will give you advice
on how and when to reduce
the amount of time you need
to wear it for, dependent on
your condition and progress.
Usually, people only need to
stay on NIV for a few days
but this does vary from
person to person so please
follow individual advice given
by your doctor.
NIV will support your
breathing to give your
muscles a rest.
It doesn’t breathe for you but
assists each breath you take
helping to get oxygen and
carbon dioxide levels back to
normal.
Helpful tip
Using your respiratory
action plan and learning
how to manage your
condition will help to reduce
the chances of you having to
go into hospital.
Medication
In this section there is information on:

Medication and treatment for COPD

Medication planner

Medication trials

Lung function results

Vaccination record
Medication and treatment for COPD
The following pages will tell
you about medications used
for COPD, how they work,
when to take them and how
they may affect you.
All medications have two
names, the drug name and
the brand name.
These drugs are often
delivered as an inhaler and
there are a variety of inhaler
devices for each drug.
For example:
Inhaler: Blue / grey
Drug: Salbutamol
Brand name: Ventolin
Device: Accuhaler
All medications come with an
information leaflet and it is
important to read this
information.
You should inform your
healthcare professional what
other medication you are
taking. This is important as
all medicines have the
potential to react with one
another.
Also remember if you are
buying non-prescription
medicines or using herbal
products you must inform
your healthcare professional
to make sure this is a safe
thing to do.
Always take your medicine
regularly as prescribed and
always remember to order a
repeat prescription in plenty
of time to prevent you
running out of inhalers or
tablets.
Helpful tip
Use the medication
planner in this section to
record what medication you
take and how often you
should take it.
Spacer devices
Many people who are using
inhalers are also prescribed
what is called a spacer
device.
What does a spacer device
do?
A spacer device is designed
to make it easier to use
inhalers, helping to deliver
more medicine directly into
the lungs where it is needed.
What are the benefits of
using a spacer device?

A spacer device
prevents some drug
particles depositing
themselves in the
mouth. This helps to
prevent oral thrush
when taking inhaled
steroids.

There is no impact of
cold aerosol on the
back of the throat,
which sometimes
makes people cough.

There is no need to coordinate the pressing of
the inhaler with
breathing in.
A volumatic spacer device
Important!
Refer to the manufacturer’s
guidelines for cleaning these
spacer devices.
An aerochamber device
Short-acting
bronchodilators
What do they do?
This type of inhaler helps to
open up the airways of your
lungs, helping you to breathe
more easily.
They are called short-acting
because their effect wears
off after approximately
4 hours.
These inhalers are called:

Salbutamol (Ventolin)

Ipratropium (Atrovent)

Terbutaline (Bricanyl)
What are the side effects?
The following side effects
may be experienced by
people using short-acting
bronchodilators:

Tremor

Headache

Nervous tension

Palpitations

Muscle cramps

Flushing
Atrovent can cause a dry
mouth and can occasionally
cause urine retention and
constipation.
Please refer to the individual
drug information leaflet for
the full list of side effects.
Long-acting
bronchodilators
What do they do?
These inhalers work in a
similar way to the shortacting bronchodilators.
They do not work quite as
quickly but their effect lasts a
lot longer.
This is why you only need to
use one either once or twice
a day depending on your
inhaler prescription.
These inhalers are called:

Salmeterol (Serevent)

Formoterol (Oxis,
Atimos)

Tiotropium (Spiriva)
What are the side effects?
The following side effects
may be experienced by
people using long-acting
bronchodilators:

Skin reactions

Tremor

Palpitations

Cramps

Chest pain

Local irritation
Spiriva can cause a dry
mouth and can occasionally
cause urine retention and
constipation.
Please refer to the individual
drug information leaflet for
the full list of side effects.
Important!
Spiriva (Tiotropium) and Atrovent (Ipratropium) should not
be taken at the same time.
Please check with your doctor or nurse if you think you have
been prescribed both.
Steroid/antiinflammatory inhalers
What do they do?
Inhaled steroids are given to
people who have severe
COPD and have had 3 or
more exacerbations (flare
ups) in a year.
They have been shown to
reduce the frequency of
exacerbations.
Some people who have a
diagnosis of both asthma
and COPD use inhaled
steroids to control their
asthma. In this situation the
steroid reduces inflammation
and treats the symptoms.
In both situations it is
important that the inhaler is
used daily, as prescribed to
gain any benefit.
What are the side effects?
The following side effects
may be experienced by
people using steroid/antiinflammatory inhalers:

Hoarseness of the
voice

Thrush of the mouth or
throat

Rash (on rare
occasions)
Your doctor or nurse may
prescribe your inhaler in
combination with a longacting bronchodilator e.g.
Seretide, Symbicort or
Fostair
Please refer to the individual
drug information leaflet for
the full list of side effects.
These inhalers are called:

Beclomethasone
diproprionate
(Becotide)

Fluticasone propionate
(Flixotide)

Budesonide (Pulmicort)
Remember!
Use a spacer device to
administer an inhaler and
rinse your mouth afterwards.
Mucolytics
What do they do?
Mucolytics help to thin
sputum.
This makes it easier to clear
it from your chest.
They may also help to
reduce exacerbations (flare
ups).
Mucolytics can be called
either:

Carbocisteine
(Mucodyne)

Mecysteine (Visclair)
What are the side effects?
Mucolytics have very few
side effects, but in rare
cases they may cause
gastric symptoms.
Rescue medication
There will be times when
your condition worsens due
to a virus, bacterial infection,
the weather or pollution.
If you have a bacterial
infection you will need
antibiotics and steroids.
If there is no infection
present, a course of steroids
may be prescribed to help
your breathing get back to
normal.
Antibiotics
Antibiotics will kill the
bacterial infection that has
affected your lungs.

Remember to tell your
doctor of any allergies
you may have to
antibiotics.

Take as directed on the
packet, at regular
intervals and complete
the whole course.

If your symptoms do
not improve within
48 hours then seek
medical advice.
What are the side effects?

Stomach upsets

Diarrhoea
Please refer to the individual
drug information leaflet for
the full list of side effects.
Steroids
Steroid tablets will reduce
both the inflammation and
swelling caused by the
infection.
These will help you to
breathe more easily.

Take first thing in the
morning

Take with food or milk

Complete the course
What are the side effects?
One of the side effects of
long term use of steroid
tablets is osteoporosis,
which is a bone thinning
disease.
Your doctor may start you on
some medication to prevent
this or send you for a bone
scan.
Nebulisers
Nebulisers are sometimes
used to treat severe
exacerbations (flare ups) for
a short period.
They are also used if you
cannot use an inhaler
properly for whatever
reason.
If you do have a nebuliser it
is important to follow the
instructions for cleaning,
changing the filters,
replacing the chamber and
tubing and having it serviced
on a regular basis.
If you do not do so it could
become a source of
infection.
They deliver the same types
of bronchodilator drugs that
your inhalers do, but in a
much larger dose.
Helpful tips for taking medicines
Use the medication planner to help you keep track of your
medication
Don’t stop taking medication without speaking to your
doctor or nurse first
Speak with your doctor, nurse or pharmacist about any
medication side effects that are worrying you
Never share your medication with other people
Anti-osteoporosis
tablets
What do they do?
These drugs work directly on
your bones to protect them
and may reduce the risk of
bone fractures.
These tablets must be taken
long term to get the benefit
from them.
They come in tablet form
and are called:
What are the side effects?
The following side effects
may be experienced by
people taking antiosteoporosis tablets:

Diarrhoea, flatulence or
constipation

Nausea, heartburn or
gastric problems

Skin rashes (very rare)

Headaches

Disodium Etridronate
and Calcium (Didronel
PMO)
Please refer to the individual
drug information leaflet for
the full list of side effects.

Alendronic acid
(Fosamax)
If you experience:

Risedronate sodium
(Actonel)

Sore throat

Bruising

Fever/high temperature
Stop taking the tablets
immediately and seek
medical advice.
Bronchodilator tablets
What do they do?
These may be prescribed if
you are still having problems
with breathlessness despite
being on the correct
treatment.
They act by opening up the
airways in the lungs and
reduce chest tightness and
wheezing. They also help to
reduce inflammation.
Unfortunately they potentially
have more serious side
effects and require
monitoring with blood tests,
so they are not commonly
used.
These tablets are called
either:

Theophylline (Nuelin,
Uniphyllin, SloPhyllin,
Theo-dur)

Aminophyllin
(Phyllocontin)
What are the side effects?
The following side effects
may be experienced by
people taking bronchodilator
tablets:

Fast pulse

Palpitations

Stomach upsets

Headaches
Oxygen therapy
In healthy lungs oxygen
enters the bloodstream from
the tiny air sacs (alveoli) in
the lungs and carbon dioxide
leaves the bloodstream in
the same way.
In people with COPD the
lungs are damaged which
may affect the exchange of
oxygen and carbon dioxide
in the lungs.
If your COPD worsens it may
be necessary to have your
oxygen levels checked.
Your healthcare professional
can check your oxygen
levels with a pulse oximeter,
which is a device which
shines a light through your
finger.
The test is pain free and only
takes a few minutes.
If the oxygen level in your
blood is less than 92% when
you are well and not exerting
yourself, you may benefit
from long term oxygen
therapy.
You will need to be referred
to the Oxygen Assessment
Service for tests for this.
These tests will look at the
oxygen and carbon dioxide
levels in your blood to see if
oxygen will be of benefit and
to establish what is a safe
level for you.
If you are recommended to
have long term oxygen
therapy the assessment
team will advise you of the
amount of oxygen you
require and the duration to
wear it.
It is important you stick to
this prescription as oxygen
can have side effects if not
controlled.
It is also important to keep it
at the prescribed dose, and
not be tempted to increase
the flow rate yourself.
Oxygen is a drug and needs
to be treated like all other
prescriptions.
It is not a treatment, it is
purely given to prevent
further damage to the heart
and lungs.
Oxygen has been found to
be of no benefit if the oxygen
level is more than 92%.
Smoking is not allowed near
an oxygen supply as it is a
fire hazard - oxygen and a
naked flame will cause a fire.
Speak to your healthcare
professional to find out more
about the Oxygen
Assessment Service.
Useful information
Oxygen therapy does not treat breathlessness.
It can make breathlessness worse.
Fan therapy direct to the face can help to ease
breathlessness
Oxygen therapy is not a treatment as such, it is used to
prevent deterioration of heart function
Medication planner
You can complete this record to help you to know what
medication you are taking and when you need to take it.
The medication I am
taking is called:
Short-acting bronchodilator
Salbutamol
Ipratropium
Terbutaline
Long-acting bronchodilator
Salmeterol
Formoterol
Tiotropium
Mucolytics
Carbocisteine
Mecysteine
Steroid/anti-inflammatory
inhalers
Beclometasone
diproprionate
Fluticasone propionate
Budesonide
Combination therapy
Symbicort
Seretide
I need to take this
medication:
The medication I am
taking is called:
Anti-osteoporosis tablets
Disodium etridronate and
calcium
Alendronic acid
Risedronate sodium
Bronchodilator tablets
Theophylline
Aminophylline
Other medication
I need to take this
medication:
Date
Drug used
Dose
Regime
Duration
You can use this to record any new medication.
Result/comment
Medication trials
Date
pH
pCO2
pO2
HCO3
BE
Long term oxygen therapy trial (LTOT)
Sats
02 L / Min
Date
FEV1
predicted
FEV1 %
FVC
predicted
FVC %
FEV1 /
FVC
ratio
You can use this to record your lung function results.
Lung Function Results
O2
sats
Body
MRC
mass dyspnoea
score
index
Vaccination record
You can use this to record when you have had your
pneumonia and flu vaccinations
Date
Vaccination given
Signature
Lifestyle Management
In this section there is information on:

Looking after yourself

Smoking

Exercise

Pulmonary rehabilitation

Healthy diet

Managing anxiety, panic and depression

Setting yourself goals

Goal setting planner

Planning for the future

Support groups

Education

Getting help with money

Travel

The weather

Relationships
Looking after yourself
Keeping well
Here are some tips to help
you to keep yourself well:
Act early if you feel your symptoms are getting worse - follow
your respiratory action plan
Protect yourself from colds
Have your flu jab every year
Make sure you are up to date with your pneumonia
vaccination
Avoid crowded places when coughs and colds are going
around
Avoid sudden changes in temperature
Cover your mouth and nose with a scarf when you go out on
cold days
Stay as active as you can
Eat a healthy, well balanced diet
Don’t run out of medication
Smoking
Smoking is a common cause
of chronic respiratory
conditions. This is because
tobacco smoke contains
thousands of poisonous
chemicals and toxins, and
when breathed in, many of
them settle in the lungs
causing disease.
Tar in cigarette smoke can
damage the lungs by
causing narrowing of the
small tubes (bronchioles),
and damaging the small
hairs (cilia) that help protect
the lungs from dirt and
infection.
Cigarette smoke also
releases substances into
your bloodstream that can
damage other organs.
Passive smokers breathe in
the smoke that is exhaled
from people who smoke. If
passive smokers have lung
conditions, this can increase
their problems.
Stopping smoking
Stopping smoking can make
a huge difference to your
health.
Even if you have a fairly
advanced chronic respiratory
condition, by stopping
smoking you are likely to
benefit and prevent further
progression of the disease.
Stop smoking services are
available locally and provide
free, confidential advice and
support for people who
would like to stop smoking.
These are offered either face
to face individually, in a
group or by telephone
support.
Useful information
To find out about your local
stop smoking service speak
to your healthcare
professional.
75
100
0
25
50
Lung function
25
Death
Disability
Age (in years)
50
Regular smoker
FEV1 (% of value at age 25)
Stopped at 65
Stopped at 45
Never smoked
75
The benefits to your lungs if you stop
smoking
Exercise
Maintaining a good level of
fitness and exercise is
extremely important to our
health and wellbeing.
Most people with chest
problems get breathless very
easily which can be
frightening and can put you
off trying to exercise.
Unfortunately if you avoid
exercising your muscles get
out of condition. They then
require more oxygen to
work, making you more
breathless than necessary.
If this is not addressed, it
can lead to a sedentary and
socially isolated lifestyle.
It is possible, however to
recondition your muscles by
exercising.
Exercise needs to be regular
and at a sufficient level to
make your breathing harder
and your heart rate faster.
You can use your
breathlessness management
strategies to help control and
slow your breathing down
more quickly after
exercising.
Consistent regular exercise
over a period of 4 - 6 weeks
should lead to an
improvement in your
breathing and levels of
tiredness.
Exercise needs to be
continued regularly to
maintain its effects in the
longer term.
Talk to your healthcare
professional if you require
more advice or support and
consider attending a
pulmonary rehabilitation
programme.
Helpful tip
Use the exercise planner in
this section to help you to
keep a record of any
exercise you do.
Exercise planner
Writing down and recording what exercise activities you do
will help you to plan when to do exercise and also help you to
increase your fitness levels.
Use this planner to keep track of any exercise you do.
The exercise I am
going to do:
Example:
Walk to the shops to get a
paper
When I am going to do it:
Example:
Every morning, 7 days a week
Pulmonary rehabilitation
Pulmonary rehabilitation is a
group based programme of
individualised exercise and
education for people affected
by chronic respiratory
conditions.
Pulmonary rehabilitation is
an important part in the
management of people with
chronic respiratory
conditions whose symptoms
are impacting their everyday
activities.
The programme is delivered
over a 6 week period with
twice weekly supervised
exercise and education
sessions covering many
different topics related to
respiratory conditions.
The aims of the programme
are to:

Reduce the impact of
your symptoms and
improve your quality of
life

Maximise muscle
strength and
endurance by providing
an individualised
exercise programme
and ongoing exercise
options. This helps to
reduce breathlessness
and fatigue to make
day to day activities
easier

Teach you about your
chest condition and
how best to manage
your symptoms
Useful information
To find out more about
pulmonary rehabilitation
speak to your healthcare
professional.
Healthy diet
Good nutrition is important.
Your body needs a varied
and balanced diet to ensure
it is receiving adequate
nutrition. Having a balanced
diet can help you fight
infection, strengthen the
immune system and reduce
any hospital stays.
Common problems
associated with chronic
respiratory conditions, which
can have an impact on your
food intake may include:

Increased shortness of
breath

Feeling tired

Reliance on oxygen

Taste changes

Dry mouth and bloating
It is vital that you manage
your diet to address these
issues and to ensure that
you get the most out of the
food you are eating.
Some people find that they
have a small appetite and
are losing weight, while
others experience no change
in their appetite and a
decrease in mobility
contributing to weight gain.
The Body Mass Index (or
BMI) is a way of seeing if
your weight is right for your
height.
The actual calculation is your
weight (in kilograms) divided
by your height (in metres
squared).
It is not dependent on sex,
age or muscle mass, but
generally is considered a
good indicator.

Under 20kg/m² =
underweight

20 - 25 kg/m² = healthy/
desirable weight

25 - 30 kg/m² =
overweight

30 - 40 kg/m² = obese

Over 40 kg/m² =
morbidly obese
(WHO, 1998)
If you are underweight
If you have a poor appetite
and/or you are feeling full
quickly: aim to eat little and
often, aiming for 3 regular
meals and snacks between
meals daily.
If you are breathless while
eating: choose foods that
are easier to chew as they
require less effort. Sit up
straight when eating to ease
the pressure on the lungs.
If you are a slow eater: do
not feel that you have to
rush, chew your food well
and eat slowly. If you find
that your food or drinks are
going cold, you could use a
plate warmer or mug
insulator.
If you are continuing to
lose weight: aim to increase
the amount of energy and
protein in the diet without
necessarily increasing the
volume of food eaten. This is
also called food fortification.
High energy foods

Butter and margarine

Syrup

Jam

Oil

Marmalade

Fried foods

Puddings

Cream and cream
cakes

Pastry

Peanut butter

Crisps

Mayonnaise

Salad cream

Biscuits

Sugar

Honey
High protein foods

Meat

Fish

Cheese

Eggs

Milk

Yoghurt

Beans and pulses

Nuts
How can I fortify my
meals?

Aim for 1 pint of full
cream milk per day.

Make fortified milk by
adding 4 tablespoons
of powdered milk to
each pint of milk.

Add butter, cream and
cheese to potatoes,
soups and sauces.

Use mayonnaise, salad
cream and butter in
sandwiches.

Add butter, margarine
or oil to potatoes and
vegetables.

Top dishes with grated
cheese.

Add cream, custard or
ice cream to puddings
and fruit.
If you are overweight
Eat regularly: aim to have
3 meals a day - if you skip
meals you are likely to eat a
lot more and snack on high
calorie snacks.
Reduce your fat intake

Choose semi skimmed
or skimmed milk, low
fat yoghurts and
cheeses.

Choose leaner types of
meat.

Use less oil and butter
when cooking.

Avoid frying. Instead
steam, bake, boil and
grill.
Eat 5 portions of fruit and
vegetables per day
One portion =
 an apple
 2 plums
 a handful of berries
 3 tablespoons of
vegetables

This includes fresh,
frozen, dried, canned
and juiced varieties.

Do not add butter,
margarine or creamy
sauces to cooked
vegetables or use
mayonnaise or salad
cream on salads.
Instead try a vinaigrette
dressing.
Portion sizes

Composition of your
plate should be ¼
protein foods e.g. meat,
¼ starchy carbohydrate
e.g. potatoes, rice,
pasta and ½
vegetables or salad.

Try eating from a
smaller plate.

Take time over your
meals and chew well.
Reduce your sugar intake

Reduce fizzy drinks
and aim for sugar free
alternatives.

Use a sweetener where
appropriate.

Limit intake of cakes,
biscuits, sweets and
chocolate.
Limit alcohol


Caffeinated drinks in
large quantities can act
on the kidneys to
increase fluid loss.
Decaffeinated drinks
can help to reduce this
effect

If the weather is hot or
you have a fever/
infection, fluid intake
should be increased by
approximately 50% to
3 litres (6 pints) per
day. This is equivalent
to 12 mugs per day.

If you suffer from heart
or kidney problems,
please check the
advice given above
with your own doctor to
see that it is safe for
you.
Alcohol is high in
calories. Aim to drink
less or opt for water,
fruit juice or sugar free/
slimline mixers or soft
drinks.
Fluid intake

The most effective way
to keep sputum thin
and to help chest
clearance is to drink
plenty of fluids.

The recommended
daily amount for adults
is 2 litres (4 pints) per
day. This is equivalent
to 8 standard mugs of
hydrating fluid.

Most drinks are
hydrating fluids,
however alcohol is a
dehydrating fluid and
will therefore need
replacing with
additional hydrating
fluids.
Managing anxiety, panic and depression
What is anxiety?
Anxiety is an unpleasant
feeling when you feel
worried, uneasy or
distressed about something
that may or may not be
about to happen.
What is panic?
To panic is to be quickly
overcome with a feeling of
fear or worry. This is usually
a consequence of anxiety.
What is depression?
Depression is a persistent
low mood, feeling bad about
yourself and feeling
hopeless about the future.
Causes
Many things can trigger
anxiety or depression such
as stress, health or life
issues.
It is not unusual for people
living with a chronic
respiratory condition to suffer
from these at some point.
The effects of anxiety and
depression can be varied.
Some may result in physical
symptoms such as:

Chest tightness

Quick shallow
breathing

Rapid heart rate

Panic attacks
Some may affect the way
you feel or think such as:

Sense of fear

Lack of concentration

Constant worrying

Irritability
Some common symptoms
are:

Feelings of
hopelessness

Lack of energy to take
care of yourself

Loss of interest in the
things you used to
enjoy
Dealing with anxiety and/
or depression
Recognising that there is a
problem is the first step in
dealing with it even if you are
not sure what is causing the
problem.
Listed below are suggestions
to help you:

Talking - sharing your
problems can help you
to find the right support
for you.

Relaxation - planned
relaxation calms
anxiety and helps your
body and mind to
recover from stress.

Exercise - helps to
release natural
chemicals in the brain
which can lead to a
feeling of wellbeing.

Self management using a problem solving
approach to deal with
stress and worries can
help you to recognise
and address triggers
more effectively.
If you have ongoing
concerns over your mood
speak to your healthcare
professional.
To help relieve a panic/breathlessness attack
1. Find a position where you can allow your shoulders to
relax e.g. leaning forwards with your arms resting on a
table or your lap.
2. Become aware of your out breath - it is likely to be quite
short at first.
3. You may find it helpful and beneficial to quietly say "er"
or "mm" on the out breath.
4. Gradually try and lengthen the out breath by increasing
the length of time you say “er” or “mm”.
5. You do not need to focus on the breath in, it will happen
automatically following your breath out.
6. Once your breathing rate has slowed down enough,
relax in a sitting position (preferable with your head and
shoulders supported).
This may take several minutes to achieve depending on
the degree of your breathlessness.
7. Continue with breathing control as described in the
“About COPD” section of this guide.
Setting yourself goals
You might have stopped
doing some things as you
feel you are unable to do
them. Or you may want to do
more but are unsure if you
can.
Setting yourself goals will
help you to organise your
time so that you can make
the most out of your life and
manage to do the things you
would like to do.
They will also help to
increase your confidence as
you try to achieve the goals
you have set yourself.
There are key stages to
setting goals:
1. Decide what you would
like to do
2. Decide how you are
going to do it
3. Plan when you are
going to do it
You will also need to look at
how important it is that you
achieve the goal and how
confident you are that you
will achieve it.
How do I set myself goals?
The process of setting goals
will allow you to choose what
you actually would like to
achieve. It will help to create
long term aims and short
term motivation.
Helpful tip
Use the goal setting
planner in this section to
help you to set and achieve
goals. If you need help,
speak to your healthcare
professional.
To help set yourself goals
Speak with your healthcare professional before you start to
set yourself goals. They will be able to help you to plan what
is possible for you to achieve.
Don’t do too much, too soon. Start off slowly and see what
progress you make - this will help to increase your
confidence.
Change the activities that you do so that you keep it
interesting.
Plan to do the activities when you feel at your best, as energy
levels change on a daily basis.
Reward yourself when you have achieved a goal, this will
help to keep you motivated.
Goal setting planner
Use this planner to help you to set yourself goals.
What I would like to do:
How important is it that you achieve this goal on a scale of
1 to 10? Circle the number below.
1
Not important
2
3
4
5
6
Very important
7
8
9
10
How am I going to do it?
When am I going to do it?
How often am I going to do it?
How confident are you that you will be able to carry out your
goal? Circle the number below.
1
Not confident
2
3
4
5
6
Very confident
7
8
9
10
Planning for the future
When living with a long term
condition it is common to
think about the future.
This may be something that
you find difficult to do, but
there are people who can
support you with this.
If you can take steps to plan
for your future, it will help to
bring peace of mind to both
you and your family.
Planning for the future may
involve asking questions
about what will happen if
your condition gets worse
and what plans you may
need to have in place.
These plans may include:

Organising finances

Writing a will

Treatment and care
options
Planning for the future will
involve you and your family
making important decisions.
These decisions should be
made before any situations
arise. This will help all the
people who are involved in
your care to carry out your
wishes.
Part of this care is to identify
not only the physical needs
of the patient (such as
shortness of breath), but
also the psychological, social
and spiritual needs.
It is important to tell your
healthcare professional how
you are feeling and how your
lung condition is affecting
your everyday life.
One of the main symptoms
of chronic lung conditions is
shortness of breath, which
can contribute to reduced
mobility, poor appetite and
tiredness.
Another common problem
can be depression. Some
people feel anxious or
irritable and unable to sleep
properly at night.
Your healthcare professional
may be able to adjust your
treatment to help improve
your quality of life and may
also be able to refer you to
other healthcare
professionals who can help.
There are specialists in
palliative care who can
provide help to improve your
symptoms along with helping
you and your family to cope
with your illness.
Treatments offered include
medication, relaxation
techniques, complementary
therapies, and day care,
which can provide social
support and ongoing reviews
of your symptoms and
problems by a dedicated
team.
Gaining a better
understanding of your
condition may help you to
become more involved in
your own treatment, decision
-making and future planning.
It may also help you to gain
more control over your
condition.
Support groups
People with chronic
respiratory conditions and
those that care for them can
often feel isolated.
Having a good social
network is important for
people with chronic
respiratory conditions and
support groups offer people
the chance to make that
happen.
There are a number of
support groups for people
with chronic respiratory
conditions across
Derbyshire. Some of these
groups are part of the British
Lung Foundation charity and
others are independent
groups.
These support groups offer
people the chance to meet
others in similar
circumstances, share
learning experiences and
offer mutual support.
Each support group is open
to all people affected by lung
conditions including families,
friends and carers.
They arrange different
outings, education activities
and social gatherings
throughout the year.
Education
Education programmes offer
you an opportunity to learn
more about your condition,
the skills you need to help
manage the problems that
are associated with your
condition and give you the
opportunity to mix with
others in similar situations to
you.
It covers areas such as:

Dealing with pain and
extreme tiredness

Coping with feelings of
depression

Problem solving
Living with Long Term
Conditions Programme
This is a free 6 week, NHS
self-management
programme for people living
with any long-term health
condition.
It aims to help you to take
more control over your
condition by learning new
skills to manage it better.
Useful information
If you want to know more, contact the Living with Long Term
Conditions team
Telephone: 01246 515550
Email: [email protected]
Getting help with money
There are a number of
benefits that are available for
people with chronic
respiratory conditions.
You may be entitled to
benefits if you:

Cannot work because
of your condition.

Have care needs
because of your
condition.

Are caring for someone
with a condition.

If you have a great deal
of difficulty getting
around you may be
eligible for a 'blue
badge' for your car.

You may find it helpful
to talk to someone for
advice about which
benefits you may be
entitled to.
Travel
If you are planning to travel
abroad, talk to your
healthcare professional
before booking your holiday.
Travel insurance
Some insurance policies do
not cover pre-existing
medical conditions.
Most people with a chronic
respiratory condition have no
problems when flying, but for
some people their blood
oxygen levels can fall
causing them to be unwell.
For these people it is
possible to arrange a flight
assessment.
It is worthwhile shopping
around for travel insurance,
there are specialist
insurance companies that
offer insurance to people
with a pre-existing medical
condition.
If you are found to need
oxygen for the flight you will
need to check with the airline
before booking your holiday.
Some airlines can charge for
this service.
It is a good idea to take extra
supplies of medication with
you on holiday. Discuss with
your healthcare professional
the possibility of taking
rescue medication in case
your condition gets worse.
Keep your medication in
your hand luggage when
flying to ensure you have it
with you if needed.
The British Lung
Foundation has information
on travel insurance and
details of companies that
may provide insurance.
The weather
Changes in temperature and
the weather can affect
people with chronic
respiratory conditions,
resulting in symptoms
becoming worse.
The best way to manage this
is to follow a healthy lifestyle,
keep yourself and your home
warm in winter and avoid
extreme changes in
temperature.
Outside

Wear several thin
layers of clothes
instead of one thick
layer

Wear a hat, gloves and
scarf to keep warm
Food

Plan for the winter
Ensure you have an
essential food supply in
the house to cover you
over the bad weather
conditions
Inside

Try to keep the rooms
in your house warm
(21°C)

Keep your bedroom
windows and curtains
closed

Check your heating
system is working
correctly
Immunisations

Ensure you have a
pneumonia vaccination
and a yearly flu jab
Plan for the summer
Outside

Stay out of the sun,
especially when it is at
its hottest between
11am and 3pm

Try to stay in the shade
as much as possible

Wear light, loose fitting
clothes and a hat
Inside

Keep the curtains
drawn at home to help
keep the rooms cooler

At night, open windows
to allow cool air into the
room
Fluid intake

Drink plenty of fluid - at
least 8 glasses a day
Keeping cool

Splash yourself with
cold water throughout
the day or take cool
showers/baths

Use a fan
Relationships
Many people with chronic
respiratory conditions find
that the condition affects
their sex life. They also find
that they are afraid to
express their sexual needs
to their partner for fear of
triggering a bout of
coughing. They may also
feel guilty about not
responding to their partner’s
needs.
To help reduce these
misunderstandings it is
important to discuss these
feelings with your partner.
Most problems come from a
lack of communication with
each other.
There are many
misunderstandings about
sexual activity when you
have a chronic respiratory
condition. Some of these
include:
The only caution that needs
to be taken is if you are
extremely breathless at rest.
If this is the case then sexual
activity may make you
anxious. Speaking to your
healthcare professional may
help.

That it may be
dangerous to
undertake sexual
activity because of
being breathless

Sexual activity has to
be spontaneous where
both partners play an
active role

Sexual problems
experienced by patients
are a result of the
condition
There is no reason why you
should not be able to still
have a loving relationship
with each other.
Suggestions to encourage affection
Talk to your partner about your concerns and ways in which
you may be able to prevent the appearance of your
symptoms.
Build up your tolerance to effort by walking or exercising.
Plan your sexual activities for the time of the day that is best
for you (usually mid or late afternoon).
Wait at least 2 hours after a big meal.
Never rush things.
Allow your partner to play a more active role.
Use your inhalers 30 - 60 minutes before sexual activity and
do your chest clearance exercises to reduce wheezing and
coughing.
Keep your medication close at hand.
Ensure the atmosphere is relaxed and get the temperature of
the room just right for you.
Use methods such as pursed lip breathing and diaphragmatic
breathing to control shortness of breath.
Try different positions which least compress your chest.
P1589/1209/09.2014/VERSION3
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Hospitals NHS Foundation Trust, nor does their inclusion constitute a recommendation.