This guide explains the concept of PR and how to get referred to a programme, plus what happens at the classes and after the programme finishes Patient guide December 2012

1. What should I expect from
pulmonary A guide for people
with breathing
rehabilitation? problems in England

2. This booklet is one of four guides explaining what people with
breathing problems can expect from aspects of their care. As well as
pulmonary rehabilitation, the guides cover:
• Managing flare-ups
• Assessment and diagnosis
• Home oxygen services
Welcome
You can view and order the guides at www.blf.org.uk or by calling
the British Lung Foundation (BLF) Helpline on 03000 030 555 If you have a long-term cond
ition that means you
struggle to breathe, pulmonary
rehabilitation can help
you. It is:
• an important part of your
treatment; and
Contents • an exercise and education
programme used to
Welcome 3 treat long-term (chronic) lun
g problems.
What is pulmonary rehabilitation? 4
Pulmonary rehabilitation helps
What does ‘pulmonary rehabilitation’ mean? 4 you to cope with your
condition, manage your breath
Why will a pulmonary rehabilitation programme help me? 5 ing and live a more
active life. It should be availab
What does the programme consist of? 6 le to everyone who
would benefit from the cours
Where do they take place? 8 e.
How can I be referred and how soon can I take part? 8
A new guide (called a comm
issioning toolkit) has been
Taking part 11 published for the NHS in Engla
nd, so that high quality
What happens when I am assessed? 11 pulmonary rehabilitation ser
vices can be delivered to a
Can I bring someone with me? 12 similar standard across the co
untry.
How many sessions will I attend? 13
What happens at the exercise classes? 13 This booklet explains what
you, your family, friends
What else will I learn? 15 and carers can expect from
a course of pulmonary
After the programme finishes 16 rehabilitation.
What happens at the end of my pulmonary rehabilitation programme? 16
What about the future? 17 You should use this booklet alo
ngside the advice given
Can I give feedback about the course? 18 by your doctor or health care
professional.
Just what I need! Remind me of the key things I should expect 18
Further information 20
Where can I get more advice and information? 20
Glossary of terms 21
www.blf.org.uk 3

3. What is pulmonary rehabilitation? Why will a pulmonary
What does ‘pulmonary rehabilitation programme
rehabilitation’ mean? help me?
Pulmonary rehabilitation is an exercise and education programme to help When you have a long-term It is normal for everyone, including
you learn to manage your breathing problems. It is: breathing problem, such as chronic athletes, to be short of breath
• provided by a range of health professionals, such as physiotherapists, obstructive pulmonary disease when exercising, but this is part of
occupational therapists, nurses and others with input from medical (COPD) or another lung condition, the therapy. You will always be
specialists; you can find it difficult to do your monitored and will never be asked
• widely used for people with a variety of long-term breathing normal daily activities without to do more than your instructor
problems; and getting breathless. You may also thinks you can or more than is safe
• designed to improve your general health and physical ability. find that you get tired very easily and possible for you.
and often feel exhausted.
Often, people with moderate to severe breathing problems – for example The people who do best from
if climbing the stairs makes you breathless – see the greatest benefit from Pulmonary rehabilitation is pulmonary rehabilitation are likely
pulmonary rehabilitation. designed to help you cope with to be those who really want to help
being short of breath and feel themselves, who want to learn and
It will help you cope with your disease, manage your condition better stronger and fitter at the same time. who have a positive attitude.
and develop your self-confidence and knowledge.
Getting out of breath can be very Have a go – pulmonary
frightening, which makes rehabilitation will not make you
breathing worse. In trying to avoid worse. It should make you feel
this, people often reduce the better, breathe easier and help
amount of activity they do. you cope with daily life.
However, this does not help, as
over time you become unfit, tired
and even more breathless.
Pulmonary rehabilitation can help
by breaking that cycle.
www.blf.org.uk 5

4. What does the
programme consist of?
They will work with you to The exercises you do in class and If you smoke, expect to be offered
A typical pulmonary produce a personalised plan that those you do at home will: support to help you stop because
rehabilitation programme details what you aim to achieve • improve your quality of life; giving up smoking is the most
includes: by the end of the programme • help reduce any anxiety or important thing you can do to
• a physical exercise (your goals). depression you may feel; and help your condition.
programme, carefully • make it easier to carry out your
designed for each person; Exercise sessions are supervised by normal daily activities. There will be people at different
• advice and information on an expert who is trained to teach stages of their condition on a
all aspects of lung health, you the right way to exercise at a Advice and information course, so you may find there are
general health and coping level that will help you improve. The education sessions provide some people that are less able
with being short of breath; you with all of the information you than you or some that are more
and Exercises will include: need to manage your condition. able than you.
• a friendly, supportive • walking; They teach you how to look after
atmosphere. • step ups; your chest and general health now Pulmonary rehabilitation is
• static exercise bikes; and and in the future. about helping you take control.
• climbing stairs. It is not a cure, but it will help
Exercise For example, you should: you feel better and more able
The exercise part of pulmonary You will also be shown exercises to • be shown special breathing to manage your condition
rehabilitation is designed to help retrain your breathing. exercises; and breathing.
meet your needs, taking into • learn how and why you are
account your condition and what You will be taught different taking your medicines;
you can do. exercises to do at home so you • learn how to look after your
get the greatest benefit from chest; and
The pulmonary rehabilitation the course. • learn from a dietician about
team will assess you so that they healthy eating.
can plan and agree your
programme with you.
6 www.blf.org.uk www.blf.org.uk 7

5. Where do pulmonary You should be offered a choice If you would prefer to attend a
of where to join a pulmonary women-only or men-only group,
rehabilitation programmes rehabilitation programme. make sure this is recorded by the
take place? Usually this will be the closest person who refers you too. Such
programme to you. groups may not be available in your
Programmes can take place in hospitals, community halls, leisure centres area at present but it is important
or doctors’ surgeries. Although programmes are often planned for the day An explanation should be that you make it known that you
time, some evening classes may also be available. given about: would prefer this if possible.
• the benefits of pulmonary
Parking should be available wherever the course is held. If you have rehabilitation; Beginning the programme
severe shortness of breath, transport to and from the classes could • the local service in your area; and You should be offered a place to
be arranged. • how important it is to attend all start the programme within
If evening classes are better for you, or if you have severe shortness of the classes to get the most around 10 weeks of being
breath that means you need transport, ask the person who refers you. benefit for you. referred.
You may not see any noticeable You may be offered an
difference after only two or three appointment sooner than this to
How can I be referred and sessions but you will notice a assess your condition and needs
how soon can I take part? difference if you attend the whole before the programme starts.
course. It is very important that Make sure you say if you are not
To join a programme, you need to • the hospital staff if you have you go to every class, if you can. able to attend on the date offered,
be referred (directed) to a been admitted for treatment; or for personal or medical reasons.
pulmonary rehabilitation team. • an occupational health worker if If English is not your first You should be offered another
You can be referred by: you are employed. language and you need help to appointment. If you still cannot
• your GP or hospital consultant; understand, you should tell the attend then you may need to be
• your community respiratory If you haven’t been referred person who refers you. It might be referred again.
team; and think that pulmonary possible to have an interpreter or
• a community matron; rehabilitation would help you, ask go to a class held in your language.
• a COPD or British Lung any of these people or call the BLF
Foundation nurse; Helpline on 03000 030 555.
8 www.blf.org.uk www.blf.org.uk 9

6. Taking part
What happens when
I am assessed?
While you are waiting waiting for your pulmonary Your first appointment You will be asked to do at least two
If you would like some advice rehabilitation course to begin. At your first appointment you will different kinds of walking tests and
while you are waiting to start the Do it more slowly and take more have a discussion with a specialist some other activities so that the
programme you can contact the rests, but don't give up. This is who will review your general team can record your oxygen
people running it or ask to be especially true if you have had a health, your condition, whether or levels, your heart rate and how
referred to your local community recent infection or a flare-up not you smoke, your diet and your breathless you are when
respiratory team. (exacerbation) of your condition medicines, among other things. exercising. This will help them
or a recent stay in hospital. understand the way your body
Try not to reduce the amount of At this, or a later appointment, you responds to exercise and will guide
activity you already do while will also need to answer some them in setting the amount of
questions about: exercise that is right for you.
• your quality of life;
• your mood; and Don’t worry if you think you
• how you manage daily activities. cannot do any exercise – the
team will ensure you do only
These questions are to help the what you can and what they
team find out how you are coping think you are capable of.
with your condition, if you are
experiencing any difficult feelings What you hope to achieve
and whether you need any extra You will agree what you hope to
support to help deal with them. achieve (your goals) with your
They will ask if you have particular assessor to work out the type of
worries or questions which you exercise programme that will
would like to talk about. benefit you most.
This will be recorded on a personal
exercise plan (or training diary).
6 www.blf.org.uk www.blf.org.uk 11

7. Can I bring someone How many sessions will I attend?
with me?
You should be shown how to You are encouraged to bring a A course usually lasts between a Make sure when you agree to
update and record your exercise relative, carer or friend with you, minimum of six and a maximum attend the course that you are
progress in the diary. Your team if you would like to. You may also of 12 weeks with two classes able to go to every class. The
will review this at times with you to want to use an interpreter, if one per week. course is free to attend but missing
see how well you are progressing is available. They will be able to sessions will mean that you do
and discuss any changes with you. attend both the exercise sessions, You will be shown how to do not get the full benefit and it will
where appropriate, and the exercises at home as well and waste NHS resources.
If you are not quite ready to education programme if you encouraged to do them regularly.
start a pulmonary rehabilitation would like them to. It’s very important for you to
programme because you need practise these exercises and
further treatment or for any People often find that bringing other things you are learning at
other reason, you should be someone along means they have home to get the greatest benefit
offered another appointment more support and confidence and from the programme.
at a later date. that they are more motivated.
If a pulmonary rehabilitation
programme is not right for you
then you should be offered an
alternative, such as an individual
appointment or exercise on
prescription instead.
12 www.blf.org.uk www.blf.org.uk 13

8. What happens at the exercise classes? What else will I learn?
Pulmonary rehabilitation classes Each time you attend your exercise The education part of the The education sessions might be
are welcoming and friendly. They class, you will be observed doing programme is very important. held each week, before or after
are led by a qualified instructor your exercises and corrected if your exercise class, or on a
who will be happy to answer any necessary. As you get fitter you It will help you to understand how different day.
questions you may have. will be shown how to make them to manage your condition so that
Everything will be explained so a little harder, so you can keep on you can live a more active or Having someone with you at these
that you feel comfortable and safe. improving until you have fulfilling life. sessions can be very helpful, as
reached the fitness level which they can learn with you and give
The team will tell you how to is right for you. you support after the programme
prepare for the class, including The education part of the has finished.
what to wear and what to bring At some of the classes, you will classes will include:
discuss the goals you agreed and • information on how to You can expect to be offered extra
what you need to do to help you keep physically active; support if the goals you agreed at
The exercise classes include: reach them. The goals can be • how to manage your your assessment have not been
• a gentle ‘warm-up’; adjusted if needed, so you get the breathlessness; met by the end of the programme
• a range of different exercises best benefit from the classes. • if you smoke, advice about or if you have other health needs
to help improve your fitness the benefits of stopping that can’t be addressed during
at a level that suits your smoking; the programme.
own needs; and • information about your
• a ‘cool-down’ period. medicines;
• an explanation of why
healthy eating is important;
Don’t worry if you have other • relaxation techniques and
health problems that you think emotional support;
might stop you from exercising. • advice on returning to work
Your pulmonary rehabilitation if this is right for you; and
team will have lots of experience in • what to do if you have a
adapting exercises for patients flare-up (exacerbation).
with various medical conditions.
14 www.blf.org.uk www.blf.org.uk 15

9. After the programme finishes
What happens at the end of my pulmonary
rehabilitation programme? What about the future?
You will be asked to attend a final You will learn how you can keep After your course has ended, you
assessment, where the team will as healthy as possible after the may be referred to:
look at your progress against the course has finished – both • a local leisure centre; or
goals you agreed at the beginning physically and emotionally. The • an independent instructor or
of the programme. team will help you set new, other suitable community
achievable goals for the future exercise programme, to carry on
You will be asked to do the same (a maintenance plan), which you with your exercises.
tests and answer the same can take away with you to follow.
questions as you did at your Even if your course does not have
first assessment. These are used A copy of your maintenance plan this arrangement you should know
to assess how the pulmonary will also be sent to your GP. how to exercise by this time. You The pulmonary rehabilitation team
rehabilitation programme has will have learned the best type of will give you the contact details for
improved your fitness, breathing, exercise for you and how often you your local support groups –
general condition and quality of should do it. You can also search including the British Lung
life. This information will be for instructors on the British Lung Foundation’s Breathe Easy groups.
sent back to the person who Foundation website at
referred you. www.blf.org.uk/InYourArea There are more than 230 Breathe
Easy support groups, reaching out
If you have a flare-up to people across the UK. They offer
(exacerbation) of your condition support, information and
or an infection, expect to be understanding for people living
referred for another course of with lung disease, their friends,
pulmonary rehabilitation. family and carers. The groups meet
regularly, organising social outings,
This is part of the treatment to help useful talks and exercise classes.
you return to a more stable state as
quickly as possible and will act as a Pulmonary rehabilitation
reminder of all the things you requires your commitment.
learned on your previous course. It does work, but you have your
part to play.
16 www.blf.org.uk www.blf.org.uk 17

10. Can I give feedback
about the course?
At the end of the programme The performance of your
you should be given a feedback pulmonary rehabilitation service
survey about your experience of should be assessed on:
pulmonary rehabilitation, to • whether you were offered a
help the team improve the place within around 10 weeks
service it provides. of being referred;
• whether you completed the
Your thoughts and views are programme; and
vital to ensure that the • whether the advice, support
service continues to develop and exercise plan you were
and improve. given helped you to understand
and live with your condition
and improved your general
well-being.
Remind me of the key things I should expect
You should expect the following from your pulmonary
rehabilitation programme, no matter where it is delivered and
who it is provided by:
• You should be taught exercises suited to your abilities and
agreed with you.
• You should understand how to manage your breathlessness.
• You should receive a copy of your training diary.
• You should be encouraged to complete the programme.
• You should receive a copy of your future maintenance plan.
• You should be asked to complete a feedback survey.
18 www.blf.org.uk

11. We’re here to help
Glossary of terms
Where can I get more
advice and information? Breathe Easy support group – a group that offers patients and their
families the chance to meet and talk to people who have gone through
BLF information is available similar experiences. There are more than 230 groups across the UK, run
If you would like more information
in print and online. by the British Lung Foundation. Contact the BLF to find your nearest one.
on your care or local pulmonary
rehabilitation service, ask your
To order, call British Lung Foundation – the UK’s lung charity, fighting lung disease
GP, nurse, community respiratory
through prevention, support and research.
team or hospital doctor. 03000 030 555 or visit
www.blf.org.uk/lung-health Chronic breathing problems – long-term breathing problems, which
The British Lung Foundation
can also help. include conditions such as chronic obstructive pulmonary disease
(COPD) and asthma.
Find out about more than 40 conditions
Knowing the facts about your condition can make all the difference. Commissioning – commissioning in the NHS is the process that NHS
The British Lung Foundation provides clear, trustworthy information organisations follow to work out the health needs of their local
about lots of types of lung conditions, as well as advice on managing population and ‘buy’ care from providers, like hospitals, to meet those
and living with a breathing problem. needs.
Call the British Lung Foundation Helpline Commissioning toolkit – commissioning toolkits are packs that
The specialist team of nurses and advisers on our helpline are here for commissioners can use to improve the quality of services for patients.
you. They are dedicated to answering your questions, whether it’s They aim to ensure that patients are placed at the forefront of the service
about pulmonary rehabilitation, how to find your nearest Breathe and are central to decisions about their care.
Easy group, coping with symptoms, knowing your rights, or if you
just need a chat. Education session – information sessions on particular topics. The aim is
to help you make healthy lifestyle choices, which may help reduce your
You can call the helpline on 03000 030 555 or you can email
risk of further lung problems.
helpline@blf.org.uk
Ringing the helpline never costs more than a local call and is Exacerbation – when your COPD symptoms get temporarily worse, also
usually free, even from a mobile. Lines are open from 10am to 6pm, called a flare-up or lung attack.
Monday to Friday.
www.blf.org.uk 21

12. Exercise class – exercise is physical activity that is planned, structured
and repetitive for the purpose of conditioning any part of the body.
Remember, you can read,
Feedback survey – a survey, usually in the form of a short, written download
and order more copies of
questionnaire, which gathers patients' views to help improve services this guide
for the future. and the other guides in th
e series.
Health care professional – your doctor, nurse, physiotherapist or They cover:
another health care worker. • Managing flare-ups
• Assessment and diagno
Health care provider – any organisation that provides health care. sis
• Home oxygen services
Pulmonary rehabilitation – a tailored exercise and education Visit www.blf.org.uk or
programme, delivered by a team of health care professionals, which
helps improve the health and well-being of people who have breathing
www.improvement.nhs.u
k/lung
problems. or call the BLF Helpline on
03000 030 555
Pulmonary rehabilitation team – the pulmonary rehabilitation team
may include specialist nurses, physiotherapists, dieticians, exercise
specialists, occupational therapists, pharmacists, psychologists and
doctors (such as a respiratory physician or GP). Code: BK22 Version: 1
Last reviewed: November 2012 Due for review: November 2014
We value feedback on our information. To let us know your views, and for the most
up to date version of this information and references, call the helpline or visit
www.blf.org.uk
© British Lung Foundation 2012
Some pictures in this booklet are posed by models. The information in this booklet
has been reviewed by independent experts. We have made every effort to ensure
that the information provided is correct. The British Lung Foundation cannot
accept liability for any errors or omissions, and policy, practice or medical research
may change. If you are concerned about your health, you should consult a doctor
or for more information consult the sources listed.
22 www.blf.org.uk

13. One person in five in the UK is affected by lung
disease. Millions more are at risk.
We are the UK’s lung charity and we are here for every
one of them, whatever their condition.
Lung disease can be frightening and debilitating.
We offer hope and support at every step so that no one
has to face it alone.
We promote greater understanding of lung disease and
we campaign for positive change in the nation’s lung
health.
We fund vital research, so that new treatments and cures
can help save lives.
We are the British Lung Foundation.
Leading the fight against lung disease.
The British Lung Foun
da
across the UK. Get in to tion has offices
uch to find
support near you.
73-75 Goswell Road Lo
ndon EC1V 7ER
Helpline: 03000 030
555
www.blf.org.uk
enquiries@blf.org.uk
Registered charity in England and Wales (326730)
and in Scotland (SC038415)