Patient guide: What should I expect from managing flare-ups of my COPD?

managing flare-upsof my COPD?

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

Welcome 3

What is a flare-up? 4

Being cared for in hospital 5

What should happen if I have to go to hospital? 5

Going home from hospital 8

What should I expect before I go home? 8What will happen after I get home? 11

Keeping well at home 13

What help and support should I expect to manage my breathing problems at home? 13

Is there other support I should expect at homeif I’ve been in hospital before? 14

Remind me of the key things I should expectto manage flare-ups of my COPD 16

In the later stages of my COPD 19

What happens when breathing problems get worse over time? 19

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

If you have a long-term condition, such as chronicobstructive pulmonary disease (COPD), that means youstruggle to breathe, you need support to manage yoursymptoms. This is very important when you have a flare-up (exacerbation) of your symptoms. It will help you to keep as well as possible and reduce the risk of youhaving to go into hospital.A new guide (called a commissioning toolkit) has beenpublished for the NHS in England, so high qualityservices can be delivered to a similar standard across the country.

If you do have to go to hospital because your breathingis very bad, the commissioning toolkit sets out guidancefor hospitals to give you the best possible treatmentwhile you are there, the support you need to returnhome safely and the help you need to avoid future stays in hospital.

This booklet explains what you, your family, friendsand carers can expect when you see a health careprofessional because of a flare-up of your condition.You should use this booklet alongside the advice givenby your doctor or health care professional.

Welcome

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This booklet is one of four guides explaining what people withbreathing problems can expect from aspects of their care. As well asmanaging flare-ups of my COPD, the guides cover:• Assessment and diagnosis• 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

www.blf.org.uk

What is a flare-up?

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A flare-up can also be called anexacerbation or a lung attack. Inthis guide we call it a flare-up.

A flare-up of COPD is a sudden andcontinued worsening of your lungcondition. You may find that youbecome more breathless and thatyou cough more and producemore phlegm. The phlegm maychange colour.

You should be aware of thesechanges and understand whatyou need to do if they happen.

A flare-up can be mild, moderateor severe.

• Mild flare-ups can be treated by increasing your inhaled medicine(your reliever) if your health care professional tells you or if you have had this explained to you.

• If you have a moderate flare-up, your doctor should prescribe steroid tablets (oral corticosteroids) as well as your inhaler. These might have alreadybeen prescribed for you to keep at home, with an explanation from your doctor of when would be the best time to start taking them. Antibiotics might also be prescribed by your doctor if he orshe thinks infection is playing a part in your flare-up and your phlegm has changed colour.

• If you have a severe flare-up you might need to be treated in hospital.

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Being cared for in hospitalWhat should happen if Ihave to go into hospital?

Some people will have to go intohospital if their flare-up cannot bemanaged at home. The decisionabout whether to go into hospitaldepends on things like:• how your COPD is normally;• how bad the flare-up is;• how your general health is, for

example if you have other conditions as well as COPD ; and

• how well you cope at home.

If you do need hospital care, youmight be admitted urgentlythrough the Accident andEmergency department (A&E) intoa Medical Assessment Unit (MAU)or directly to a medical orrespiratory ward.

However you are admitted, youshould expect to be seen bysomeone from the respiratoryteam within 24 hours of goinginto hospital to assess what care you need.

You should then expect to see yourhospital doctor or a senior memberof the respiratory team every day,so they can check how well you areresponding to treatment andchange it if necessary.

When you are first assessed adecision will be taken about thesort of treatment you needimmediately. This may be: • oxygen therapy in addition to

the medicines prescribed; or • non-invasive ventilation (NIV), if

your breathing problems are verybad and your lungs are not able to ‘blow off’ carbon dioxide. Getting rid of this waste gas is just as important as getting oxygen into the body.

NIV is not the same as oxygentherapy. It involves wearing a maskthat covers the nose or face and isconnected to a small machine thathelps your lungs work better.

In really bad flare-ups, whereoxygen therapy or NIV doesn’twork for you, you might need to beadmitted to an intensive care unitwhere a special machine (called aventilator) will manage yourbreathing for you until you are ableto breathe on your own.

You should expect to havephysiotherapy while you are inhospital to teach you: • different kinds of breathing

exercises to do while you are in hospital; and

• how to continue with these when you go home.

If you have been prescribedoxygen and inhaled medicines,perhaps with a spacer, you will begiven support and help to usethem correctly.

A care plan will be agreed withyou to record what should happenwhile you are there and start theprocess of getting you home assoon as possible.

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You should also expect to begiven information about:• how to get support to help you

stop smoking, if you smoke, and the importance of stopping smoking to help your condition;

• how to recognise when you are having another flare-up, what to do and who to contact (an action plan);

• how to eat healthily;• what vaccinations will help,

such as the flu jab from your GP;• what the arrangements are for

going home from hospital (discharge); and

• the date of your review appointment, which should be about two weeks after your discharge from hospital. This appointment may be with your GP, a community nurse or with a member of the hospital team.

You should already have had aspecial test, called spirometry, toconfirm your diagnosis of COPD ifit was suspected that you had thiscondition before the flare-up.

If this is your first visit to hospitaland you have not already had aspirometry test or been diagnosedwith COPD, this should bearranged for when you are wellenough to take the test. This mightbe after you leave hospital. It willshow how your lungs are at thetime of your test.

If there is a ‘Hospital at Home’service or an ‘Early SupportedDischarge’ scheme in your area,you might be able to access theseif they are appropriate for thestage of your treatment. Yourhospital team or GP will agree ifeither of these services are theright option for you. Ask someoneif they have not been mentionedto you.

Your care plan should include:• a review of your current COPD and any other conditions you

have that are related to your COPD;• a review of your medicines and any other treatments;• an assessment of your physical state and whether a course of

pulmonary rehabilitation would help you;• an assessment of how you are coping with your disease

emotionally and whether you need some additional support in hospital; and

• an assessment of any practical help and support you will need when you go home - for example oxygen therapy or social care.

For more information aboutspirometry read the guide‘What should I expect fromassessment and diagnosis ofCOPD?’, which is part of thisseries. You can download the guide or order a printedcopy at www.blf.org.uk orby calling our helpline on03000 030 555.


Going home from hospitalWhat should I expectbefore I go home?

Before leaving hospital you should expect to be given a self-management plan. This providesinformation and support for you,your friends, family or carer to helpyou manage your condition athome so you can avoid having togo back into hospital.

Your wishes and those of yourfamily or carers should be takeninto account when this plan iswritten and you should expect tohave a copy of it and agree withwhat it says.

A copy of your self-managementplan will be sent to your GP so heor she knows what is expectedwhen you go home.

• the next steps in your tests and treatment;

• if you smoke, information about support to help you stop;

• information about pulmonary rehabilitation;

• information about how and when to seek medical help;

• information about further support and advice, such as from the British Lung Foundation, local libraries, local care and support groups and carer organisations;

• education and advice to help you take control of your condition, including about healthy living and diet, proper

use of medicines, steroid packs and inhaler techniques;

• the date of your follow-up appointment;

• an action plan outlining how to recognise a flare-up and what to do;

• the name and contact details of your key worker (your main support);

• the name of your respiratory doctor;

• a telephone helpline number; and

• a record of what you and your family or carers would like to happen if you are approaching the end of your life.

Your self-management plan should include:


You should have a follow-upappointment within two weeksof being discharged fromhospital. This should be with ahealth care professional such asyour GP or nurse or anothermember of the respiratory team.

When you are sent home from thehospital your key worker mightcontact you to see how you arecoping. They might then contactyou once a week or once a monthfor a while, depending on yourcondition, to see how you are. Youwill have been given contact

What will happen after I get home?

If you need community or socialcare to help manage when you gohome, this should be arrangedbefore you leave hospital.

If you are unsure about any of this,speak to your health careprofessional and tell them why youare confused and what you need toknow. Ask them to go throughthings again − it doesn’t matterhow many times you need to ask.The most important thing is thatyou understand what support isavailable to you and how to getthe help you need.

Above all, you should have theknowledge, information andsupport to keep you well athome, to manage your flare-upsand to reduce the risk of havingto go into hospital.

details for your key worker andrespiratory doctor and you cancontact them for advice andguidance when you need it.

Your GP will be told about yourstay in hospital and whattreatment you have had. You willalso be able to contact your GP oryour nurse for advice.

If you have community or socialcare to help you at home, youshould have been given a contactnumber in case there are anyproblems.

For more information readthe guide ‘From hospital tohome’ . You can downloadthe guide or order aprinted copy atwww.blf.org.uk or bycalling our helpline on 03000 030 555.

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Most people with COPD canmanage their condition at homewith support from their GP, nurse,the community respiratory teamand sometimes social care – even if they have a flare-up.

For example, you might have beengiven steroid tablets, and possiblyantibiotics, to keep at home andtake as soon as your symptoms getworse, rather than waiting for anappointment.

You might also have writteninformation to refer to at homeabout what to look out for and do ifyour breathing starts to becomeworse. This is called an action plan.

You should contact your doctoror nurse as soon as you starttaking steroid tablets andantibiotics so they can check howyou are responding to them, andrenew your prescription so youhave tablets ready for the nexttime you have a flare-up. It isimportant that you remember todo this.

Keeping well at homeWhat help and support should I expect tomanage my breathing problems at home?

You might have been prescribedoxygen for use at home, but this isonly if you have low oxygen levelsin your blood and you have beenproperly assessed by a specialistteam.

Seeking help and startingtreatment as soon as yoursymptoms get worse, even ifonly slightly, can help. It will:• mean that less damage is done

to your lungs;• help you to recover faster; and• help to avoid you having to go

into hospital.

For more information aboutoxygen, read the guide ‘Whatshould I expect from myhome oxygen service?’, whichis part of this series. You candownload the guide or order a printed copy atwww.blf.org.uk or by calling our helpline on 03000 030 555.


During a stay in hospital, youshould have been told about thesethings to help you when you gohome: • how to look after your breathing

problems on a daily basis; • how to recognise if they are

getting worse; and• what you need to do if this

happens – for example to start taking the steroid tablets and antibiotics that have been prescribed for you to keep at home.

You should also have been askedto complete a pulmonaryrehabilitation programme if yourhealth care professional thinks youwould benefit from this.

For more information readthe guide ‘What should Iexpect from pulmonaryrehabilitation?’, which is partof this series. You candownload the guide or order a printed copy atwww.blf.org.uk or by calling our helpline on 03000 030 555.

If you have been in hospital before but are now managing your condition at home, you willalways have someone to contactfor help and support. This willinclude your key worker, hospitaldoctor, GP, nurse or other membersof the respiratory team.

If you left hospital with the help of a Supported Discharge Team there will be specialist nurses,physiotherapists and occupational therapists who can visit you at home.

Some help from social careservices might also be arranged ifnecessary. To be assessed for helpyou will need to have beenreferred by the communitysupport team, GP or your hospital team.

Is there other support I should expect at home if I’vebeen in hospital before?

Before leaving hospital youshould have had a plan for yourfuture care and long-termtreatment discussed and agreedwith you. It will have provided allof the information and advice youneed to manage your lifestyle and condition. This is called a self-management plan.

All of your health care workers willknow about your self-managementplan and refer to it when they seeyou. If your condition changes, theself-management plan will bealtered to make sure it is as up todate as possible and a truereflection of your needs.

For more information about thecontent of a self-management plan, see page 9.

Keeping well at home

You should expect the following to help you to manage yourbreathing problems at home:• support from your GP, nurse,

community respiratory team and social care service;

• support from your hospital team if you have been in hospital before;

• information about how to spot the early symptoms of a flare-up;

• steroid tablets and antibiotics to

keep at home, ready to take at the first signs of a flare-up;

• information about the correct use of oxygen if this has been prescribed for you;

• the name of the main person to contact (your key worker) and how to do this;

• a telephone helpline number for your hospital team; and

• a referral to a pulmonary rehabilitation programme if this is right for you.


In hospital

You should expect the following if you have to go into hospital:• review by someone from the

respiratory team within 24 hours of being admitted;

• review by a senior member of the respiratory team every day;

• treatment to improve your symptoms as quickly as possible;

• access to an intensive care unit for ventilation to help you breathe, if you need help;

• physiotherapy to help your breathing and to teach you ways to control it;

• a care plan agreed with you;• information about your

condition, medicines, diet and how to reduce future flare-ups; and

• an assessment of your physical and emotional needs and support provided if you need it.

Remind me of the key things I should expect to helpmanage flare-ups of my COPD

Going home

You should expect the followingwhen you go home from hospital:• you should have discussed and

agreed your ongoing care;• you should have an agreed

self-management plan;• you should understand the next

steps in your tests and treatment;• you should know how to recognise

if you are having a flare-up;• you should know who to contact

to seek medical help and advice;• you should know about your

medicines and the correct way to take them;

• you should know how to get help to stop smoking;

• you should have been given information on healthy living and diet;

• you should know how to contact local support groups and where to find information;

• you should have community or social care arranged if this is needed; and

• you should have a follow-up appointment arranged.

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In the later stages of my COPDWhat happens when my breathingproblems get worse over time?

Unfortunately there is no curefor COPD. However, there istreatment and support to helpyou breathe better, to live as fulland active a life as possible andto slow down the course of thedisease.

If your breathing has becomeworse over time and your doctorthinks you are nearing the laststages of the disease, this shouldbe explained to you, your family orthe people looking after you.

Your care plan will now start toinclude some extra help to providethe kind of physical, emotional andpractical support you will needover the last months of your life.For example, you might want helpto put your affairs in order or towrite a will. You might also want totake time to decide whether youwant to stay at home or go to ahospice when you have a serious flare-up.

When you are nearing the end ofyour life, members of your healthcare team can give advice and offer help with controllingsymptoms such as pain,breathlessness or phlegm.

They can help to provide practicalcare with equipment, such asspecial beds and mattresses tomake you comfortable, and cananswer any questions you mighthave. They will support you, yourfamily and carers and will deal withpsychological and spiritual care aswell as practical issues.

You might hear this type of carecalled palliative care.

For more information about end of life care call the British Lung Foundation Helpline on03000 030 555 or visitwww.blf.org.uk

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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 an exacerbation.

Acute – this means recent onset when used medically but in commonterms 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 bythe 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.

Bronchodilator – a short acting 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.

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 – these are tools that commissioners can use toimprove the quality of services for patients. They aim to ensure thatpatients are placed at the forefront of the service and are central todecisions about their care.

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 your condition, 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 protected]

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

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

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

Health care provider – any organisation which provides health care.

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

NIV – a method of helping someone get enough oxygen into their bloodvia a small machine that helps you breathe oxygen through the maskand into the lungs.

Reliever – a medication to help relieve symptoms.

Spacer – a device to help the inhalation of medicines.

Self-management plan – an ongoing plan of your care to help manageyour condition.

Spirometry – measures the amount of air you can forcefully blow out ofyour lungs.

Sputum or phlegm – mucus produced from your chest.

Steroids – a type of medication that can be used to reduceinflammation. Taken from an inhaler or as tablets.

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Code: BK23 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:• Pulmonary rehabilitation• Assessment and diagnosis• 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 [email protected]

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

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Patient guide: What should I expect from managing flare-ups of my COPD?