What should I expect from assessment and diagnosis of COPD? A guide for people with breathing problems in England
This booklet is one of four guides explaining what people with breathing problems can expect from aspects of their care. As well as assessment and diagnosis, the guides cover: Managing flare-ups Pulmonary rehabilitation Home oxygen services You can view and order the guides at or by calling the British Lung Foundation (BLF) Helpline on 03000 030 555 Contents Welcome 3 Chronic obstructive pulmonary disease (COPD) 4 What is COPD? 4 How is COPD recognised? 5 Where will the tests take place? 7 Referral 8 How am I referred for assessment? 8 How do I get an appointment? 9 What 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? 13 What happens next? 15 Remind me of the key things I should expect 15 Further information 16 Where can I get more advice and information? 16 Glossary of terms 17 Welcome If you have a condition that means you struggle to breathe, it is important that you are assessed and you get the right diagnosis so that you can be treated. A new guide (called a commissioning toolkit) has been published for the NHS in England, so that high quality services can be delivered across the country. 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 and diagnose your condition. You should use this booklet alongside the advice given by your health care professional. 3
Chronic obstructive pulmonary disease (COPD) What is COPD? Your breathing problems could be caused by a condition called chronic obstructive pulmonary disease (COPD). This is the name used to describe a number of conditions, including chronic bronchitis and emphysema, where people have difficulty breathing because of long-term damage to their lungs. Everyone who has chronic bronchitis and emphysema has COPD, and many people will have a mixture of both. The changes that occur in your lungs when you have COPD vary depending on the exact nature of your condition. But the result is partial blockage of the airways (the tubes that carry air in and out of your lungs), due to inflammation and too much phlegm. Damage can also happen to the small airways and air sacs in your lungs. This leads to the lungs losing their stretchiness. This loss means there is a lack of support for the airways, which can collapse, trapping air in the lungs when you breathe out. COPD can affect every aspect of day-to-day life. You will probably have to make some changes to your lifestyle if you are diagnosed with COPD, to ensure you can continue to lead as full and active a life as possible. There are treatments available to help people breathe more easily but they don t repair the damage that has already been done. Your lungs Bronchioles (small airways) Air sacs (alveoli) Diaphragm Windpipe (trachea) Airways (bronchi) Lung 4 5
How is COPD diagnosed? Where will the tests take place? You will need tests to see if you have a lung condition. If your doctor thinks that you might have COPD, he or she will need to find out how well your lungs work. The most accurate test for this is carried out using a device called a spirometer. The spirometer measures the amount of air you can forcefully blow out of your lungs in the first second of breathing out called the FEV 1 (forced expiratory volume in 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, the amount of air you can blow out quickly is reduced. You will be asked to do this test several times as three satisfactory blows are needed to check the result and make an accurate diagnosis. Your doctor (GP) might do the tests themselves. Or they might send you to a Spirometry and Assessment Service somewhere locally, such as a hospital. The spirometry test should always be carried out by someone who has been trained and is qualified to do it. Parking should be available wherever the spirometry service is located. If you have very bad breathing problems, ask whether transport is available to your appointment. You can take a family member or carer with you if you would like to. It might not be possible to have them with you while you take the test but if you would like them with you when you are told the results, ask when you go to the appointment. You should always expect to have the same standard of test and the same information and support wherever the test is done. If English is not your first language and you need help to understand, tell your GP when they refer to the service. It might be possible to have an interpreter. 6 7
Referral How am I referred for assessment? How do I get an appointment? If your GP does not do the tests themselves, they should refer you to a local Spirometry and Assessment Service. This should happen 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 has looked at the records of people who they have seen over the last few years with the above symptoms called an audit. Even if you are well at present but have had treatment for breathlessness and a cough on several occasions in the past, you might still be referred. You should receive a letter or telephone call from your GP or nurse offering a spirometry test and assessment and explaining the reasons for this. They will ask if you agree to have the test. A spirometry test and assessment may also be offered when you are seen for a general health or lung health check. If your GP or nurse is not doing the tests themselves, then the Spirometry and Assessment Service will contact you within about 10 days of you agreeing to the appointment, to set a date for you to attend. If the service is not able to contact you by telephone, an appointment might be sent in the post. If you are not fit enough for the test at present for example if you have had a flare-up of your symptoms in the past four to six weeks the test will be delayed until you are better. The person you speak to will agree a different date with you and then check nearer to the time that you are fit. If you are still not fit, another date can be agreed. Sometimes you might need even longer to recover. In this case the Spirometry and Assessment Service will refer you back to your GP until you are better. At every stage you should be asked whether you would still like to have a spirometry test and be assessed. You will need to answer a few questions 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. 8 9
At the appointment What happens when I am assessed? There are some reasons why it would not be sensible to do a spirometry 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 you should have a spirometry test, ask the health care professional. What should I do before the appointment? Once you have agreed your appointment time and date you will be given some instructions telling you what you need to do beforehand. 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 inhalers by your GP you should make sure you take these with you to the appointment. You should still take any other medicines you have been prescribed, unless you are told otherwise. Ask if you are unsure. The tests will be carried out by a health care professional. When you go to your appointment the health care professional will check that you have followed the instructions for example that you have not recently eaten a large meal or smoked. 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. You will also have a test to see how much oxygen is in your blood called pulse oximetry. This test is done using a special clip on the end of your finger. If the oxygen in your blood is low on this test, you should be asked to have a blood test. 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 a spirometry test (see page 6). You will be carefully shown how to use a spirometer. If you are unsure, ask to be shown again. The person doing the test will explain and show you the sort of blow needed for the spirometer to get the best result. They will also tell you why you need to do this several times until there have been three satisfactory readings. 10 11
Diagnosis What will the results show? Don t worry if the tests make you breathless you will be given time to recover before your next blow. Once there have been three satisfactory readings, you will be asked to use an inhaler with medicine to open your airways. You will then be asked to do the spirometry test again after approximately 15 minutes. When the assessment and spirometry test is complete, the health care professional will look at the results to decide whether you have COPD and work out how severe it is. If the spirometry test shows that you do not have COPD you may need to have other tests. If the spirometry test and assessment show that you have COPD, you will be told straight away. The health care professional will explain the diagnosis to you and how severe the condition is in your case. You will be encouraged to ask questions 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 or carer with you and you would like them to understand, and be able to support you in the future, ask if they can be included in the discussion or told about it at a later date. You will agree a plan for your future care, which takes into account your needs and what you want to happen for now and in the future. 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, medication and what to steps to take when you become ill; details of local information sources, including libraries and organisations such as the British Lung Foundation; and information about local care and support groups, including British Lung Foundation Breathe Easy groups. 12 13
If you smoke, the reasons why you should stop will be explained stopping smoking is the most important 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 help available, which will be offered to you if you need it. If it would help you, you will also be offered pulmonary rehabilitation. Pulmonary rehabilitation is an exercise and education programme. It will be explained and, if you agree to take part, you will be referred. For more information read the guide What should I expect from pulmonary rehabilitation?, which is part of this series. You can download the guide or order a printed copy at or by calling our helpline on 03000 030 555. If the spirometry test shows that you do not have COPD, more tests might be needed to work out why you have breathing problems. Once the result of these tests is known, you can get the right information and treatment for your condition. For more information on other conditions that cause breathing problems, call the British Lung Foundation Helpline on 03000 030 555 or visit /lung-health What happens next? If you were assessed by the Spirometry and Assessment service, then once the tests are over and you have all the information 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. Remind me of the key things I should expect 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 sources and support groups; and referred back to your GP for care and follow-up appointments. 14 15
We re here to help Where can I get more advice and information? 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. BLF information is available in print and online. To order, call 03000 030 555 or visit /lung-health Find out about more than 40 conditions Knowing the facts about your condition can make all the difference. The British Lung Foundation provides clear, trustworthy information about lots of types of lung conditions, as well as advice on managing and living with a breathing problem. Call the British Lung Foundation Helpline The specialist team of nurses and advisers on our helpline are here for you. They are dedicated to answering your questions, whether it s about 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 email helpline@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. Glossary of terms 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 common use means sharp, severe or intense. Antibiotics medications used to treat infection caused by bacteria. Breathe Easy support group a group that offers patients and their families the chance to meet and talk to people who have gone through similar experiences. There are more than 230 groups across the UK run by the British Lung Foundation (BLF). Contact the BLF to find your nearest one. British Lung Foundation the UK s lung charity, fighting lung disease through prevention, support and research. Bronchodilator an inhaled medicine. Care plan a full written plan of your care needs now and for the foreseeable future, including specific information. Chronic breathing problems long-term breathing problems, which include conditions such as chronic obstructive pulmonary disease (COPD) and asthma. Chronic bronchitis inflammation of the tubes or airways which carry oxygen from the air through the lungs. It is one of the conditions included in the term COPD. 17
Commissioning Commissioning in the NHS is the process that NHS organisations follow to work out the health needs of their local population and buy care from providers, like hospitals, to meet those needs. Commissioning toolkit tools that commissioners can use to improve the quality of services for patients. They aim to ensure that patients are placed 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 are damaged, losing their stretchiness and making it difficult to breathe in and 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 or another 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 shows how 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. 18 Remember, you can read, download and order more copies of this guide and the other guides in the series. They cover: Managing flare-ups Pulmonary rehabilitation Home oxygen services Visit or www.improvement.nhs.uk/lung or call the BLF Helpline on 03000 030 555 Code: BK24 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 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.
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 Foundation has offices across the UK. Get in touch to find support near you. 73-75 Goswell Road London EC1V 7ER Helpline: 03000 030 555 enquiries@blf.org.uk Registered charity in England and Wales (326730) and in Scotland (SC038415)