pulmonaryrehabilitation?

What should I expect fromA guide for people with breathingproblems in England

If you have a long-term condition that means youstruggle to breathe, pulmonary rehabilitation can helpyou. It is:• an important part of your treatment; and• an exercise and education programme used to treat long-term (chronic) lung problems.

Pulmonary rehabilitation helps you to cope with yourcondition, manage your breathing and live a moreactive life. It should be available to everyone whowould benefit from the course.

A new guide (called a commissioning toolkit) has beenpublished for the NHS in England, so that high qualitypulmonary rehabilitation services can be delivered to asimilar standard across the country.

This booklet explains what you, your family, friendsand carers can expect from a course of pulmonaryrehabilitation.

You should use this booklet alongside the advice givenby your doctor or health care professional.

Welcome 3

What is pulmonary rehabilitation? 4

What does ‘pulmonary rehabilitation’ mean? 4Why will a pulmonary rehabilitation programme help me? 5What does the programme consist of? 6Where do they take place? 8How can I be referred and how soon can I take part? 8

Taking part 11

What happens when I am assessed? 11Can I bring someone with me? 12How many sessions will I attend? 13What happens at the exercise classes? 13What else will I learn? 15

After the programme finishes 16

What happens at the end of my pulmonary rehabilitation programme? 16What about the future? 17Can I give feedback about the course? 18Just what I need! Remind me of the key things I should expect 18

Further information 20

Where can I get more advice and information? 20Glossary of terms 21

Welcome

3

This booklet is one of four guides explaining what people withbreathing problems can expect from aspects of their care. As well aspulmonary rehabilitation, the guides cover:• Managing flare-ups• Assessment and diagnosis• Home oxygen services

You can view and order the guides at www.blf.org.uk or by callingthe British Lung Foundation (BLF) Helpline on 03000 030 555

Contents

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Pulmonary rehabilitation is an exercise and education programme to helpyou learn to manage your breathing problems. It is: • provided by a range of health professionals, such as physiotherapists,

occupational therapists, nurses and others with input from medical specialists;

• widely used for people with a variety of long-term breathing problems; and

• designed to improve your general health and physical ability.

Often, people with moderate to severe breathing problems – for exampleif climbing the stairs makes you breathless – see the greatest benefit frompulmonary rehabilitation.

It will help you cope with your disease, manage your condition betterand develop your self-confidence and knowledge.

What is pulmonary rehabilitation?What does ‘pulmonaryrehabilitation’ mean?

When you have a long-termbreathing problem, such as chronicobstructive pulmonary disease(COPD) or another lung condition,you can find it difficult to do yournormal daily activities withoutgetting breathless. You may alsofind that you get tired very easilyand often feel exhausted.

Pulmonary rehabilitation isdesigned to help you cope withbeing short of breath and feelstronger and fitter at the same time.

Getting out of breath can be veryfrightening, which makesbreathing worse. In trying to avoidthis, people often reduce theamount of activity they do.However, this does not help, asover time you become unfit, tiredand even more breathless. Pulmonary rehabilitation can helpby breaking that cycle.

It is normal for everyone, includingathletes, to be short of breathwhen exercising, but this is part ofthe therapy. You will always bemonitored and will never be askedto do more than your instructorthinks you can or more than is safeand possible for you.

The people who do best frompulmonary rehabilitation are likelyto be those who really want to helpthemselves, who want to learn andwho have a positive attitude.

Have a go – pulmonaryrehabilitation will not make youworse. It should make you feelbetter, breathe easier and helpyou cope with daily life.

Why will a pulmonaryrehabilitation programmehelp me?

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What does theprogramme consist of?

ExerciseThe exercise part of pulmonaryrehabilitation is designed to meet your needs, taking intoaccount your condition and whatyou can do.

The pulmonary rehabilitation team will assess you so that theycan plan and agree yourprogramme with you.

They will work with you to produce a personalised plan thatdetails what you aim to achieve by the end of the programme(your goals).

Exercise sessions are supervised byan expert who is trained to teachyou the right way to exercise at alevel that will help you improve.

Exercises will include:• walking;• step ups;• static exercise bikes; and • climbing stairs.

You will also be shown exercises tohelp retrain your breathing.

You will be taught differentexercises to do at home so you get the greatest benefit fromthe course.

The exercises you do in class andthose you do at home will:• improve your quality of life;• help reduce any anxiety or

depression you may feel; and• make it easier to carry out your

normal daily activities.

Advice and informationThe education sessions provideyou with all of the information youneed to manage your condition.They teach you how to look afteryour chest and general health nowand in the future.

For example, you should:• be shown special breathing

exercises;• learn how and why you are

taking your medicines;• learn how to look after your

chest; and• learn from a dietician about

healthy eating.

If you smoke, expect to be offeredsupport to help you stop becausegiving up smoking is the mostimportant thing you can do to help your condition.

There will be people at differentstages of their condition on acourse, so you may find there aresome people that are less ablethan you or some that are moreable than you.

Pulmonary rehabilitation isabout helping you take control.It is not a cure, but it will helpyou feel better and more able to manage your condition and breathing.

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A typical pulmonaryrehabilitation programmeincludes:• a physical exercise

programme, carefully designed for each person;

• advice and information on all aspects of lung health, general health and coping with being short of breath; and

• a friendly, supportive atmosphere.

Programmes can take place in hospitals, community halls, leisure centresor doctors’ surgeries. Although programmes are often planned for the daytime, some evening classes may also be available.

Parking should be available wherever the course is held. If you havesevere shortness of breath, transport to and from the classes could be arranged.

If evening classes are better for you, or if you have severe shortness ofbreath that means you need transport, ask the person who refers you.

Where do pulmonaryrehabilitation programmestake place?

How can I be referred andhow soon can I take part?

To join a programme, you need tobe referred (directed) to apulmonary rehabilitation team. You can be referred by:• your GP or hospital consultant; • your community respiratory

team; • a community matron; • a COPD or British Lung

Foundation nurse;

• the hospital staff if you have been admitted for treatment; or

• an occupational health worker if you are employed.

If you haven’t been referred and think that pulmonaryrehabilitation would help you, askany of these people or call the BLFHelpline on 03000 030 555.

You should be offered a choice of where to join a pulmonaryrehabilitation programme. Usually this will be the closest programme to you.

An explanation should be given about: • the benefits of pulmonary

rehabilitation; • the local service in your area; and • how important it is to attend all

the classes to get the most benefit for you.

You may not see any noticeabledifference after only two or threesessions but you will notice adifference if you attend the wholecourse. It is very important thatyou go to every class, if you can.

If English is not your firstlanguage and you need help tounderstand, you should tell theperson who refers you. It might bepossible to have an interpreter orgo to a class held in your language.

If you would prefer to attend awomen-only or men-only group,make sure this is recorded by theperson who refers you too. Suchgroups may not be available in yourarea at present but it is importantthat you make it known that youwould prefer this if possible.

Beginning the programmeYou should be offered a place tostart the programme withinaround 10 weeks of beingreferred.

You may be offered anappointment sooner than this toassess your condition and needsbefore the programme starts. Make sure you say if you are notable to attend on the date offered,for personal or medical reasons.You should be offered anotherappointment. If you still cannotattend then you may need to bereferred again.

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Your first appointmentAt your first appointment you willhave a discussion with a specialistwho will review your generalhealth, your condition, whether ornot you smoke, your diet and yourmedicines, among other things.

At this, or a later appointment, youwill also need to answer somequestions about: • your quality of life;• your mood; and • how you manage daily activities.

These questions are to help theteam find out how you are copingwith your condition, if you areexperiencing any difficult feelingsand whether you need any extrasupport to help deal with them.They will ask if you have particularworries or questions which youwould like to talk about.

Taking partWhat happens whenI am assessed?

While you are waitingIf you would like some advice while you are waiting to start theprogramme you can contact thepeople running it or ask to bereferred to your local communityrespiratory team.

Try not to reduce the amount ofactivity you already do while

waiting for your pulmonaryrehabilitation course to begin. Do it more slowly and take morerests, but don't give up. This isespecially true if you have had arecent infection or a flare-up(exacerbation) of your condition or a recent stay in hospital.

You will be asked to do at least twodifferent kinds of walking tests andsome other activities so that theteam can record your oxygenlevels, your heart rate and howbreathless you are whenexercising. This will help themunderstand the way your bodyresponds to exercise and will guidethem in setting the amount ofexercise that is right for you.

Don’t worry if you think youcannot do any exercise – theteam will ensure you do onlywhat you can and what theythink you are capable of.

What you hope to achieveYou will agree what you hope toachieve (your goals) with yourassessor to work out the type ofexercise programme that willbenefit you most.

This will be recorded on a personalexercise plan (or training diary).

You should be shown how toupdate and record your exerciseprogress in the diary. Your teamwill review this at times with you tosee how well you are progressingand discuss any changes with you.

If you are not quite ready to start a pulmonary rehabilitationprogramme because you needfurther treatment or for any other reason, you should beoffered another appointment at a later date.

If a pulmonary rehabilitationprogramme is not right for youthen you should be offered analternative, such as an individualappointment or exercise onprescription instead.

You are encouraged to bring arelative, carer or friend with you, if you would like to. You may alsowant to use an interpreter, if one is available. They will be able toattend both the exercise sessions,where appropriate, and the education programme if you would like them to.

People often find that bringingsomeone along means they havemore support and confidence andthat they are more motivated.

Can I bring someonewith me?

A course usually lasts between aminimum of six and a maximum of 12 weeks with two classes per week.

You will be shown how to doexercises at home as well andencouraged to do them regularly. It’s very important for you topractise these exercises and other things you are learning athome to get the greatest benefitfrom the programme.

How many sessions will I attend?

Make sure when you agree toattend the course that you areable to go to every class. Thecourse is free to attend but missingsessions will mean that you do not get the full benefit and it will waste NHS resources.

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Pulmonary rehabilitation classesare welcoming and friendly. Theyare led by a qualified instructorwho will be happy to answer anyquestions you may have.Everything will be explained sothat you feel comfortable and safe.

The team will tell you how toprepare for the class, includingwhat to wear and what to bring

Each time you attend your exerciseclass, you will be observed doingyour exercises and corrected ifnecessary. As you get fitter you will be shown how to make them a little harder, so you can keep onimproving until you have reached the fitness level which is right for you.

At some of the classes, you willdiscuss the goals you agreed andwhat you need to do to help youreach them. The goals can beadjusted if needed, so you get thebest benefit from the classes.

What else will I learn?

The education part of theprogramme is very important.

It will help you to understand howto manage your condition so thatyou can live a more active orfulfilling life.

The education sessions might beheld each week, before or afteryour exercise class, or on a different day.

Having someone with you at thesesessions can be very helpful, asthey can learn with you and giveyou support after the programmehas finished.

You can expect to be offered extrasupport if the goals you agreed atyour assessment have not beenmet by the end of the programmeor if you have other health needsthat can’t be addressed during the programme.

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The education part of theclasses will include:• information on how to

keep physically active;• how to manage your

breathlessness;• if you smoke, advice about

the benefits of stopping smoking;

• information about your medicines;

• an explanation of why healthy eating is important;

• relaxation techniques and emotional support;

• advice on returning to workif this is right for you; and

• what to do if you have a flare-up (exacerbation).

What happens at the exercise classes?

The exercise classes include:• a gentle ‘warm-up’; • a range of different exercises

to help improve your fitness at a level that suits your own needs; and

• a ‘cool-down’ period.

Don’t worry if you have otherhealth problems that you thinkmight stop you from exercising.Your pulmonary rehabilitationteam will have lots of experience inadapting exercises for patientswith various medical conditions.

You will be asked to attend a finalassessment, where the team willlook at your progress against thegoals you agreed at the beginningof the programme.

You will be asked to do the sametests and answer the samequestions as you did at your first assessment. These are used to assess how the pulmonaryrehabilitation programme hasimproved your fitness, breathing,general condition and quality oflife. This information will be sent back to the person whoreferred you.

After the programme finishesWhat happens at the end of my pulmonaryrehabilitation programme?

After your course has ended, youmay be referred to:• a local leisure centre; or • an independent instructor or

other suitable community exercise programme, to carry on with your exercises.

Even if your course does not havethis arrangement you should knowhow to exercise by this time. Youwill have learned the best type ofexercise for you and how often youshould do it. You can also searchfor instructors on the British LungFoundation website atwww.blf.org.uk/InYourArea

If you have a flare-up(exacerbation) of your condition or an infection, expect to bereferred for another course ofpulmonary rehabilitation.

This is part of the treatment to helpyou return to a more stable state asquickly as possible and will act as areminder of all the things youlearned on your previous course.

What about the future?

The pulmonary rehabilitation teamwill give you the contact details foryour local support groups –including the British LungFoundation’s Breathe Easy groups.

There are more than 230 BreatheEasy support groups, reaching outto people across the UK. They offersupport, information andunderstanding for people livingwith lung disease, their friends,family and carers. The groups meetregularly, organising social outings,useful talks and exercise classes.

Pulmonary rehabilitationrequires your commitment. It does work, but you have yourpart to play.

You will learn how you can keepas healthy as possible after thecourse has finished – bothphysically and emotionally. Theteam will help you set new,achievable goals for the future (a maintenance plan), which youcan take away with you to follow.

A copy of your maintenance planwill also be sent to your GP.

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At the end of the programme you should be given a feedbacksurvey about your experience ofpulmonary rehabilitation, to help the team improve the service it provides.

Your thoughts and views arevital to ensure that the service continues to develop and improve.

Can I give feedback about the course?

The performance of yourpulmonary rehabilitation serviceshould be assessed on:• whether you were offered a

place within around 10 weeks of being referred;

• whether you completed the programme; and

• whether the advice, support and exercise plan you were given helped you to understand and live with your conditionand improved your general well-being.

Remind me of the key things I should expect

You should expect the following from your pulmonaryrehabilitation programme, no matter where it is delivered andwho 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.

We’re here to helpWhere 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 throughsimilar experiences. There are more than 230 groups across the UK, runby the British Lung Foundation. Contact the BLF to find your nearest one.

British Lung Foundation – the UK’s lung charity, fighting lung diseasethrough prevention, support and research.

Chronic breathing problems – long-term breathing problems, whichinclude conditions such as chronic obstructive pulmonary disease(COPD) and asthma.

Commissioning – commissioning in the NHS is the process that NHSorganisations follow to work out the health needs of their localpopulation and ‘buy’ care from providers, like hospitals, to meet thoseneeds.

Commissioning toolkit – commissioning toolkits are packs thatcommissioners can use to improve the quality of services for patients.They aim to ensure that patients are placed at the forefront of the serviceand are central to decisions about their care.

Education session – information sessions on particular topics. The aim isto help you make healthy lifestyle choices, which may help reduce yourrisk of further lung problems.

Exacerbation – when your COPD symptoms get temporarily worse, alsocalled a flare-up or lung attack.

Glossary of terms

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If you would like more information on your care or local pulmonary rehabilitation service, ask your GP, nurse, community respiratory team or hospital doctor.

The British Lung Foundation can also help.

Find out about more than 40 conditionsKnowing the facts about your condition can make all the difference.The British Lung Foundation provides clear, trustworthy informationabout lots of types of lung conditions, as well as advice on managingand living with a breathing problem.

Call the British Lung Foundation HelplineThe specialist team of nurses and advisers on our helpline are here foryou. They are dedicated to answering your questions, whether it’sabout pulmonary rehabilitation, how to find your nearest Breathe Easy group, coping with symptoms, knowing your rights, or if you just need a chat.

You can call the helpline on 03000 030 555 or you can emailhelpline@blf.org.uk

Ringing the helpline never costs more than a local call and is usually free, even from a mobile. Lines are open from 10am to 6pm, Monday to Friday.

BLF information is available in print and online.

To order, call 03000 030 555 or visitwww.blf.org.uk/lung-health

Exercise class – exercise is physical activity that is planned, structuredand repetitive for the purpose of conditioning any part of the body.

Feedback survey – a survey, usually in the form of a short, writtenquestionnaire, which gathers patients' views to help improve services for the future.

Health care professional – your doctor, nurse, physiotherapist oranother health care worker.

Health care provider – any organisation that provides health care.

Pulmonary rehabilitation – a tailored exercise and educationprogramme, delivered by a team of health care professionals, whichhelps improve the health and well-being of people who have breathingproblems.

Pulmonary rehabilitation team – the pulmonary rehabilitation teammay include specialist nurses, physiotherapists, dieticians, exercisespecialists, occupational therapists, pharmacists, psychologists anddoctors (such as a respiratory physician or GP).

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Code: BK22 Version: 1Last reviewed: November 2012 Due for review: November 2014

We value feedback on our information. To let us know your views, and for the mostup to date version of this information and references, call the helpline or visitwww.blf.org.uk © British Lung Foundation 2012

Some pictures in this booklet are posed by models. The information in this booklethas been reviewed by independent experts. We have made every effort to ensurethat the information provided is correct. The British Lung Foundation cannotaccept liability for any errors or omissions, and policy, practice or medical researchmay change. If you are concerned about your health, you should consult a doctoror for more information consult the sources listed.

Remember, you can read, downloadand order more copies of this guideand the other guides in the series.They cover:• Managing flare-ups• Assessment and diagnosis• Home oxygen servicesVisit www.blf.org.uk orwww.improvement.nhs.uk/lungor call the BLF Helpline on03000 030 555

One person in five in the UK is affected by lungdisease. Millions more are at risk.

We are the UK’s lung charity and we are here for everyone of them, whatever their condition.

Lung disease can be frightening and debilitating.We offer hope and support at every step so that no onehas to face it alone.

We promote greater understanding of lung disease andwe campaign for positive change in the nation’s lunghealth.

We fund vital research, so that new treatments and curescan help save lives.

We are the British Lung Foundation.Leading the fight against lung disease.

The British Lung Foundation has officesacross the UK. Get in touch to findsupport near you.73-75 Goswell Road London EC1V 7ERHelpline: 03000 030 555www.blf.org.ukenquiries@blf.org.uk

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