assessment anddiagnosis of COPD?

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

Welcome 3

Chronic obstructive pulmonary disease (COPD) 4

What is COPD? 4How is COPD recognised? 5Where will the tests take place? 7

Referral 8

How am I referred for assessment? 8How do I get an appointment? 9What should I do before the appointment? 10

At the appointment 11

What happens when I am assessed? 11

Diagnosis 13

What will the results show? 13What happens next? 15Remind me of the key things I should expect 15

Further information 16

Where can I get more advice and information? 16Glossary of terms 17

If you have a condition that means you struggle to breathe, it is important that you are assessedand you get the right diagnosis so that you can be treated.

A new guide (called a commissioning toolkit) hasbeen published for the NHS in England, so thathigh quality services can be delivered across thecountry. These services will:• test your lungs;• tell you about the results of your tests; and • if you are diagnosed, give you the right information to manage your condition.

This booklet explains what you, your family,friends and carers can expect when you see a health care professional to assess anddiagnose your condition.

You should use this booklet alongside the advicegiven by your health care professional.

Welcome

3

This booklet is one of four guides explaining what people withbreathing problems can expect from aspects of their care. As well asassessment and diagnosis, the guides cover:• Managing flare-ups• Pulmonary rehabilitation• 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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Chronic obstructive pulmonarydisease (COPD)What is COPD?

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Your breathing problems could be caused by a condition calledchronic obstructive pulmonarydisease (COPD).

This is the name used to describe a number of conditions, includingchronic bronchitis andemphysema, where people havedifficulty breathing because oflong-term damage to their lungs.Everyone who has chronicbronchitis and emphysema hasCOPD, and many people will have a mixture of both.

The changes that occur in yourlungs when you have COPD varydepending on the exact nature ofyour condition. But the result ispartial blockage of the airways (thetubes that carry air in and out ofyour lungs), due to inflammationand too much phlegm.

Damage can also happen to thesmall airways and air sacs in yourlungs. This leads to the lungs losingtheir stretchiness. This loss meansthere is a lack of support for theairways, which can collapse,trapping air in the lungs when you breathe out.

COPD can affect every aspect ofday-to-day life. You will probablyhave to make some changes toyour lifestyle if you are diagnosedwith COPD, to ensure you cancontinue to lead as full and active a life as possible.

There are treatments availableto help people breathe moreeasily but they don’t repair thedamage that has already been done.

Your lungs

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Bronchioles(small airways)

Air sacs(alveoli)

Windpipe(trachea)

Airways(bronchi)

Lung

Diaphragm

How is COPD diagnosed?

You will need tests to see if youhave a lung condition.

If your doctor thinks that youmight have COPD, he or she willneed to find out how well yourlungs work. The most accurate testfor this is carried out using a devicecalled a spirometer.

The spirometer measures theamount of air you can forcefullyblow out of your lungs in the firstsecond of breathing out – calledthe FEV1 (forced expiratory volumein one second).

It also measures the total amount of air you blow out in one breath – called the FVC (forced vital capacity).

If your airways are narrowed, theamount of air you can blow outquickly is reduced.

You will be asked to do thistest several times as three satisfactory ‘blows’ are needed to check the result and make an accurate diagnosis.

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Where will the tests take place?

Your doctor (GP) might do the teststhemselves. Or they might sendyou to a Spirometry andAssessment Service somewherelocally, such as a hospital.

The spirometry test should alwaysbe carried out by someone whohas been trained and is qualified to do it.

Parking should be availablewherever the spirometry service is located. If you have very badbreathing problems, ask whethertransport is available to yourappointment.

If English is not your first language and you need help tounderstand, tell your GP when theyrefer to the service. It might bepossible to have an interpreter.

You can take a family member orcarer with you if you would like to.It might not be possible to havethem with you while you take thetest but if you would like themwith you when you are told theresults, ask when you go to theappointment.

You should always expect tohave the same standard of test and the same informationand support wherever the test is done.

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ReferralHow am I referred forassessment?

If your GP does not do the teststhemselves, they should refer you to a local Spirometry andAssessment Service. This shouldhappen if;• you are breathless; and• you have a long-term cough

producing phlegm; or• you have had several bouts of

‘winter bronchitis’ with some wheezing; or

• you have been prescribed antibiotics and/or steroid tablets several times;

• you are a smoker or ex-smoker; or• you have been admitted to

hospital with breathlessness and a spirometry test was not done while you were there.

You might also be assessed because your local surgery haslooked at the records of peoplewho they have seen over the lastfew years with the abovesymptoms – called an audit.

Even if you are well at present but have had treatment forbreathlessness and a cough onseveral occasions in the past, youmight still be referred.

How do I get anappointment?

You should receive a letter ortelephone call from your GP ornurse offering a spirometry testand assessment and explaining thereasons for this. They will ask if youagree to have the test.

A spirometry test and assessmentmay also be offered when you areseen for a general health or lunghealth check.

If your GP or nurse is not doing the tests themselves, then theSpirometry and AssessmentService will contact you withinabout 10 days of you agreeing tothe appointment, to set a date foryou to attend. If the service is notable to contact you by telephone,an appointment might be sent inthe post.

You will need to answer a fewquestions to check:• that you are fit enough for

the test; • that it is the right test for you; and• that you would still like to be

assessed.

If you are not fit enough for thetest at present – for example ifyou have had a flare-up of yoursymptoms in the past four to sixweeks – the test will be delayeduntil you are better. The personyou speak to will agree a differentdate with you and then checknearer to the time that you are fit.If you are still not fit, another datecan be agreed.

Sometimes you might need evenlonger to recover. In this case theSpirometry and AssessmentService will refer you back to yourGP until you are better.

At every stage you should beasked whether you would stilllike to have a spirometry testand be assessed.

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The tests will be carried out by ahealth care professional. When yougo to your appointment the healthcare professional will check thatyou have followed the instructions– for example that you have notrecently eaten a large meal orsmoked.

You will be asked:• about your breathing and how

it affects your daily life;• about your general health; and• if there are reasons why you

shouldn’t have the test, for example recent surgery or heart problems.

You will have an examination,including measuring your weight and height.

At the appointmentWhat happens when I am assessed?

There are some reasons why itwould not be sensible to do aspirometry test, such as:• recent surgery on your chest,

tummy or eyes;• problems with your heart

or circulation;• coughing up blood; or• swelling of your blood vessels.

If you are unsure whether youshould have a spirometry test, askthe health care professional.

You will also have a test to see howmuch oxygen is in your blood –called pulse oximetry. This test isdone using a special clip on theend of your finger. If the oxygen inyour blood is low on this test, youshould be asked to have a bloodtest. You may also be sent for an x-ray if you have not had one in the past year.

You will be asked to take aspirometry test (see page 6).

You will be carefully shown how to use a spirometer. If youare unsure, ask to be shown again. The person doing the testwill explain and show you the sort of blow needed for thespirometer to get the bestresult. They will also tell you whyyou need to do this several timesuntil there have been threesatisfactory readings.

What should I do beforethe appointment?

Once you have agreed yourappointment time and date youwill be given some instructionstelling you what you need to dobeforehand.

These instructions will include:• to stop smoking for at least

24 hours before the test if possible;

• to avoid eating a large meal within a few hours of the test;

• to avoid exercise;

• to wear comfortable, loose clothing; and

• to avoid using a reliever inhaler for several hours before the tests if possible.

If you have been prescribed inhalersby your GP you should make sureyou take these with you to theappointment. You should still takeany other medicines you have beenprescribed, unless you are toldotherwise. Ask if you are unsure.

Don’t worry if the tests make youbreathless – you will be given timeto recover before your next blow.

Once there have been threesatisfactory readings, you will beasked to use an inhaler withmedicine to open your airways.You will then be asked to do thespirometry test again afterapproximately 15 minutes.

When the assessment andspirometry test is complete, thehealth care professional will look atthe results to decide whether youhave COPD and work out howsevere it is.

If the spirometry test shows thatyou do not have COPD you mayneed to have other tests.

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If the spirometry test andassessment show that you haveCOPD, you will be told straightaway. The health care professionalwill explain the diagnosis to youand how severe the condition is inyour case.

You will be encouraged to askquestions so you fully understand: • your condition; • what this might mean for you in

your normal daily life; and• the sort of help, support and

treatment you should expect.

If you have a family member orcarer with you and you wouldlike them to understand, and beable to support you in the future,ask if they can be included in thediscussion or told about it at a later date.

You will agree a plan for yourfuture care, which takes intoaccount your needs and what youwant to happen for now and in thefuture.

DiagnosisWhat will the results show?

Your care plan should include:• what to do next to manage

your condition;• any other tests you might

need;• information on how and when

to access medical help if you have a flare-up of your symptoms – called an action plan;

• information about how to stop smoking and smoking cessation services, if you smoke;

• advice to help you manage your condition, including, healthy living, diet, medicationand what to steps to take when you become ill;

• details of local information sources, including libraries andorganisations such as the British Lung Foundation; and

• information about local care and support groups, including British Lung Foundation Breathe Easy groups.

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If the spirometry test shows thatyou do not have COPD, more testsmight be needed to work out whyyou have breathing problems.Once the result of these tests isknown, you can get the rightinformation and treatment for your condition.

For more information on otherconditions that cause breathingproblems, call the British LungFoundation Helpline on 03000 030 555 or visitwww.blf.org.uk/lung-health

If you were assessed by theSpirometry and Assessmentservice, then once the tests are over and you have all theinformation you need, you will be referred back to your GP.

Your doctor will be sent:• a letter discharging you from the

service and returning you to their care;

• a copy of the care plan you have agreed;

• advice on when to send you a follow-up appointment;

• information about what the next steps in your treatment are;

• information about what medications you need; and

• information about how your care plan should be developed in the future.

What happens next?

For more information readthe guide ‘What should Iexpect from pulmonaryrehabilitation?’, which is part of this series. You candownload the guide or order a printed copy atwww.blf.org.uk or bycalling our helpline on03000 030 555.

You should expect:• to agree to be referred to the

Spirometry and Assessment Service by your GP or nurse;

• to be contacted by the service to agree an appointment within about 10 days of being referred;

• to be told how to prepare for the appointment; and

• to be shown how to use the spirometer.

If you have COPD, you will be:• told about your diagnosis and

how severe your condition is;• told what support and

treatment to expect;• asked to agree a care plan for

the future with your health care team;

• offered support to stop smoking if you smoke;

• offered a course of pulmonary rehabilitation;

• told about information sourcesand support groups; and

• referred back to your GP for care and follow-up appointments.

Remind me of the key things I should expect

If you smoke, the reasons why you should stop will be explained – stopping smoking is the mostimportant thing you can do to help yourself. If you agree but need help to stop smoking you will be offered this. It isn’t easy to quit, but there is lots of helpavailable, which will be offered to you if you need it.

If it would help you, you will also be offered pulmonaryrehabilitation. Pulmonaryrehabilitation is an exercise andeducation programme. It will beexplained and, if you agree to take part, you will be referred.

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We’re here to helpWhere can I get more advice and information? Action plan – details what you need to do if you have a flare-up

of your condition.

Acute – this means recent onset when used medically but in commonuse means sharp, severe or intense.

Antibiotics – medications used to treat infection caused by bacteria.

Breathe Easy support group – a group that offers patients and theirfamilies the chance to meet and talk to people who have gone throughsimilar experiences. There are more than 230 groups across the UK run by the British Lung Foundation (BLF). Contact the BLF to find yournearest one.

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

Bronchodilator – an inhaled medicine.

Care plan – a full written plan of your care needs now and for theforeseeable future, including specific information.

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

Chronic bronchitis – inflammation of the tubes or airways which carryoxygen from the air through the lungs. It is one of the conditionsincluded in the term COPD.

Glossary of terms

If you would like more information about your care, 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 diagnosis and tests, 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

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

Commissioning toolkit – tools that commissioners can use to improvethe quality of services for patients. They aim to ensure that patients areplaced at the forefront of the service and are central to decisions about their care.

Emphysema – a lung disease where the air sacs and small airways aredamaged, losing their stretchiness and making it difficult to breathe inand out. It is one of the conditions included in the term COPD.

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

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

Health care provider – any organisation that provides health care.

Inhaler – a device that gives you a dose of medication to breathe in.

Pulse oximetry – a test using a machine (pulse oximeter) that showshow much oxygen is in your blood.

Spirometer – measures the amount of air you can forcefully blow out of your lungs.

Sputum or phlegm – mucus secreted by the respiratory tract.

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Code: BK24 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• Pulmonary rehabilitation• Home oxygen services

Visit 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

Registered charity in England and Wales (326730)and in Scotland (SC038415)