Fact sheet 1 Information for patients
Breathlessness Support Service Breathlessness information and commonly asked questions This information sheet helps you manage your long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice from your GP. Is being breathless harming me? Breathlessness is not harmful, but it is very unpleasant and frightening. It is important for you to remain as active as your illness allows you to be. This information sheet will help you to manage your breathlessness. Is there anything I can do to stop myself feeling frightened? It is very common for people who are breathless to feel frightened and anxious. These feelings can make your breathing worse. It is important to remind yourself that breathlessness is not in itself dangerous. There are techniques which you can use to help reduce anxiety and control it. These include relaxation, positioning and breathing exercises. You can find out more about these techniques from the BSS physiotherapist, and a summary of these techniques are provided on our Managing Breathlessness information sheet. What else can I do to help with my breathlessness? Cool air - cooling your face with cold air or water reduces the feeling of breathlessness. You can use a small hand held or standing fan, or simply a cool draught from an open window. You may prefer to use a cold flannel. Plan - a very important part of controlling breathlessness is to plan your activities. Decide your priorities and try not to do too much at once or in any one day. Some activities may fill you with dread as you know they are particularly difficult for you. In these cases try to ask for help. This may be frustrating for you, but will allow you to conserve your energy for the things that are important to you and help your confidence. Pace - allow plenty of time and take breaks when you need them. Activity may increase your feeling of breathlessness but this is normal. With any activity that you find difficult, such as going upstairs, it is important that you feel in control of your breathing before you start.
Pace yourself so that you do not become too breathless. Try to arrange furniture in convenient places to rest, such as an extra chair in the bathroom or hallway. Tasks involving carrying or bending are often very difficult, and you should ask for help or advice with these. You may also find it helpful to arrange your house so that items that you use often are kept within easy reach. If you are going out know where you can rest and if possible take someone with you to carry the bags! There are many good booklets available with more information – please ask for details. Remember, it is important to be as active as you can. Are there any drugs that may help my breathlessness? There are three main families of drugs used to help breathlessness. The most commonly used drugs from these groups are: (a) Prednisolone or Dexamethasone (which are steroids): you may have already taken steroids for another condition as they are commonly used in medicine. Your doctor can advise you on how to take them. (b) Morphine: we usually think of morphine as a drug to treat pain, but it can also be very helpful for breathlessness. You will need a much smaller dose and sometimes you will take it less frequently than when used for pain relief. (c) Diazepam: diazepam, also called Valium, is usually used to treat anxiety, but it can also help breathlessness. It is usually prescribed at night as it can make you sleepy. The doctor will often start with a low dose, building up to a higher dose depending on how it suits you. Will oxygen help me? Oxygen may help breathlessness in some people, but it does not help everyone. While you are here, we will try to find out if you respond well to oxygen. If you do, we will talk to your family doctor and see if you can have it at home. If you do not find it useful, it will not be prescribed. If you find oxygen helpful you can use it at anytime. Some people use it when they know they are going to be busy, such as just before they prepare to walk upstairs, or just before walking up the road. Other people like to use it now and again when they have become breathless. Please also find below a list of useful publications and contact details for your information. If you have any questions or concerns regarding this information, please discuss these with either Professor Moxham or Professor Higginson at one of your clinic visits.
Organisation
Publication
Address
Tel number
Website
Macmillan cancer support
Relax and breathe relaxation CD or audiotape for people experiencing breathlessness (Free)
89 Albert Embankment London SE1 7UQ
0808 808 2020 www.macmillan.org.uk
Macmillan cancer Coping with 89 Albert support shortness of breath Embankment (Free) London SE1 7UQ
0808 808 2020 www.macmillan.org.uk
Roy Castle Lung A practical guide to Cancer Foundation breathlessness (Free)
Enterprise Way 0800 358 7200 www.roycastle.org Wavertree Technology Park Liverpool, Merseyside L13 1FB
Roy Castle Lung Take a breather Cancer Foundation video patient guide (ÂŁ5 charge)
Enterprise Way 0800 358 7200 www.roycastle.org Wavertree Technology Park Liverpool, Merseyside L13 1FB
NHS Various 111 British Lung Various Foundation (free +/- donation)
73-75 Goswell Road London EC1V 7ER
020 7688 5555
www.blf.org.uk
British Heart Various Foundation (Free +/- donation)
Greater London House 180 Hampstead Road London NW7 7AW
0870 600 6566
www.bhf.org.uk
Acknowledgement
This document has been reproduced and adapted from the patient information leaflets used at Addenbrooke’s Hospital as part of their Breathlessness Intervention Service with the permission of Dr Sara Booth, MD, FRCP (Macmillan Consultant in Palliative Medicine, Clinical Director Palliative Care and Associate Lecturer, University of Cambridge). www.kch.nhs.uk
Corporate Comms: 1079 May 2015
Fact sheet 2 Information for patients
Breathlessness Support Service Managing breathlessness This information sheet helps you manage your long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice from your GP. How are you breathing? Make yourself aware of how you are breathing: • When you breathe in, are you tensing your shoulders to lift your chest up? • To exhale, do you force the air out? • Are you breathing very rapidly? • When you need to move, do you find yourself holding your breath? What can I do to help my breathlessness? Relax When you are feeling breathless you may automatically start to use your chest, shoulder and neck muscles, hoping it will make breathing easier. These muscles are not meant to work continuously for long periods of time, so they will soon become tense, sore and tired. If you can relax and rest these muscles while still getting the breaths you need, it will help to make you feel more comfortable and less distressed. The following steps will help you to achieve a more relaxed way of breathing. Getting relaxed Feel which areas of your body are tensed up, and try to loosen them. For example, unclench your jaw, let your shoulders relax and drop down. It helps if you or a relative can massage these areas of tension. Your physiotherapist can advise you how to do this. Relaxation CDs and tapes can also be very helpful; please ask if you would like to try one. Abdominal or tummy breathing This is a more relaxed way of breathing which is very efficient and less tiring than using your upper chest, neck and shoulder muscles. The BSS physiotherapist will also demonstrate it. • W ith your shoulders relaxed, rest one hand gently on your stomach (just above your tummy button).
• K eep your shoulders relaxed and heavy, allow your hand to rise gently as you breathe in and out through your nose. It may help to imagine air filling your stomach like a balloon. • Gently sigh the air out through your mouth. • If your nose if blocked, breathe in and out through your mouth and discuss with your doctor how to unblock it. Slow down When you are comfortable with the abdominal breathing, try to slow down the speed of your breathing. Remember that when you slow down, your breathing becomes deeper, which is more efficient. Follow these tips to reduce the feeling of breathlessness A draught of air across your face, from a handheld fan or an open window, may reduce the feeling of breathlessness, but avoid very cold air. Cooling your face with cold water may also help. Positioning Your physiotherapist will discuss with you which positions of relaxation are suitable for you. These positions are available on positions to ease Breathlessness Support Service fact sheet four. How active should I be? It is important to stay as active as you can. This will prevent your muscles becoming weaker. How to make your life easier At home • Keep things you use often downstairs and close to hand. • Have a phone point close to your bed or armchair. • Consider using a trolley or carrier bag for shopping. • Plan your chores or daily activities, such as bathing or shaving, to make sure you have everything you need before you start. • Spread your tasks throughout the day. • Keep yourself active and independent, but do rest between activities and whenever you feel you are starting to get too breathless. Walking and climbing stairs • Pace your breathing to your steps; breathe in over one step, breathe out over the next two steps. • Move at a comfortable pace, and breathe steadily. Avoid holding your breath or trying to move too fast. • Use walking aids if they help you. You can discuss this with your Physiotherapist or Occupational Therapist. • Stop and rest whenever you need to. • Have rest points at the top and bottom of the stairs and remember to count your breathing.
• U se the handrail when climbing stairs, take the steps slowly and stop to rest when you feel the need to. Eating and drinking • T ake small meals often, rather than one large one. • Eat smaller mouthfuls. • Avoid foods that are difficult to chew, add sauces when possible. • Drink sips of fluid often to avoid becoming dehydrated. If you have any questions or concerns regarding this information, please discuss these with either your BSS Physiotherapist or Occupational therapist during one of your home visits.
Acknowledgement
This document has been reproduced and adapted from the patient information leaflets used at Addenbrooke’s Hospital as part of their Breathlessness Intervention Service with the permission of Dr Sara Booth, MD, FRCP (Macmillan Consultant in Palliative Medicine, Clinical Director Palliative Care and Associate Lecturer, University of Cambridge). Corporate Comms: 1079 www.kch.nhs.uk May2015
Fact sheet 3 Information for patients
Breathlessness Support Service Handheld fan This information sheet helps you manage your long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice from your GP. Will using a fan help my breathlessness? A cool draft of air from a handheld fan has been found to be very helpful in reducing the feeling of breathlessness. You may find that the following can also help ease breathlessness: • desktop or floor standing fans • opening windows, for example in the car, to allow a cool draft of air to enter • using a cool flannel or compress on your face. How should I use the handheld fan? • W hen you feel breathless adopt a comfortable position. You can discuss this with your physiotherapist or doctor for further advice. • H old your fan approximately six inches or 15cms from your face (or the distance you find most helpful). • A im the draft of air towards the central part of your face so that you feel the draught around the sides of your nose and above your top lip. You should feel the benefit within a few minutes. Fans with three or more rotating blades seem to be most effective. Is using a handheld fan safe? You can use your fan for as long and as often as you wish as there are no known problems associated with using it. You may find it helpful to use your fan if you stop for a ‘breather’ whilst moving or walking, and for sudden breathlessness when you are still. If you have any questions or concerns regarding this information, please discuss these with either your BSS Physiotherapist or Occupational therapist during one of your home visits.
Acknowledgement
This document has been reproduced and adapted from the patient information leaflets used at Addenbrooke’s Hospital as part of their Breathlessness Intervention Service with the permission of Dr Sara Booth, MD, FRCP (Macmillan Consultant in Palliative Medicine, Clinical Director Palliative Care and Associate Lecturer, University of Cambridge). www.kch.nhs.uk
Corporate Comms: 1079 May 2015
Fact sheet 4 Information for patients
Breathlessness Support Service Positions to ease breathlessness This information sheet helps you manage your long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice from your GP. The positions shown on the back of this leaflet may help to ease your breathlessness or help you feel more comfortable. For more information about which positions may help you, please speak to your physiotherapist, occupational therapist or doctor. If you have any questions or concerns regarding this information, please discuss these with either your BSS physiotherapist or occupational therapist during one of your home visits. 1. High side lying
• M ake sure your head and chest are supported • Bend your top leg over • Put your lower arm under the pillows.
2. Forward lean sitting
• P ile several pillows on a table • Relax your head ont them • Relax your arms on the table Do not try this position if you have neck problems or are uncomfortable with things near your face.
4. Relaxed standing
3. Relaxed sitting position
• S it on a chair • R est your elbows on your thighs • R elax your hands and wrists.
5. Forward lean standing • L ean against a wall • Relax your shoulders, arms and neck.
• L ean against a banister, fence or wall but keep a comfortable distance. • Relax your hands, wrists and neck.
Acknowledgement
This document has been reproduced and adapted from the patient information leaflets used at Addenbrooke’s Hospital as part of their Breathlessness Intervention Service with the permission of Dr Sara Booth, MD, FRCP (Macmillan Consultant in Palliative Medicine, Clinical Director Palliative Care and Associate Lecturer, University of Cambridge). www.kch.nhs.uk
Corporate Comms: 1079 May 2015
Fact sheet 5 Information for patients
Breathlessness Support Service A distraction technique, using the five senses This information sheet helps you manage your long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice from your GP. Preparation Sit or lie in a comfortable position, in an armchair or lying on a bed. Make sure you are well supported by pillows and are neither too warm or cold. Minimise the distractions like answering the telephone; and interruptions from your family. It’s a good idea to tell your family that you are having some time on your own. Relaxing Try and close your eyes. If this is too difficult, choose a spot in front of you on the wall or floor, and keep your eyes fixed on that point. When you are relaxed it will be easier to keep them closed. Mentally scan your body for muscles that are tense; such as your facial muscles. For example, check for frowning, or hunched shoulders. Try to gently relax these muscle groups; you might need to do this from time to time throughout the session. Visualisation Try to visualise a relaxing scene. It could be your favourite place, a walk that you know, a garden, or the beach. It could equally be somewhere from your imagination. Somewhere that makes you feel happy and secure, but not places that evoke bad or sad memories. Your chosen scene When you feel that your chosen scene is developing in your imagination use your five senses to make it more real to you. • W hat can you see? What are the shapes and colours of the trees, leaves, grass, fences, clouds, and sky in your scene? • Try to see the small details using your imagination. • Slowly move on to enhance this with the senses of smell and sound. • Ask yourself what can you hear (maybe seagulls, waves or wind) and smell in your special place.
• Imagine picking up a small object, a shell, some sand or a flower. • In your mind feel it; what is its texture? • P erhaps in your scene you have something to eat: a sweet, ice cream or maybe you can taste the salt air. • Use your sense of taste to enhance your imaginary image. From time to time, remember to note how comfortable and happy you are in this special place. Make sure you reinforce the experience as positive. When you feel relaxed, walk away from your scene in your mind, such as walking back home from the beach. Gently re-enter the real world. When you have finished your visualisation Remember that when you have achieved a deep relaxed state that you need to get up slowly, and allow your body to adjust. Enjoy this relaxed state, and so don’t start to rush around. Practice The more you practice visualisation, the easier you will find it. When you start, choose a realistic time to practice, maybe 10 minutes, twice a day. Try using a cassette recorder to make your own audiotape tape of your prompts (or ask someone to make one for you). Using pre-recorded prompts can prevent your mind from ‘wandering off’ and help to keep you focused. It should be great fun building on this scene in your mind, and practice should enable you to tune into it just when you need to. If you have any questions or concerns about this information, please discuss these with either your BSS Physiotherapist or Occupational therapist during one of your home visits.
Acknowledgement
This document has been reproduced and adapted from the patient information leaflets used at Addenbrooke’s Hospital as part of their Breathlessness Intervention Service with the permission of Dr Sara Booth, MD, FRCP (Macmillan Consultant in Palliative Medicine, Clinical Director Palliative Care and Associate Lecturer, University of Cambridge). www.kch.nhs.uk
Corporate Comms: 1079 May 2015
Fact sheet 6 Information for patients
Breathlessness Support Service Good sleep hygiene Sleep hygiene is a term used to describe good sleep habits. If you have trouble sleeping, we have some suggestions to help you get a better night’s sleep. Helpful tips Go to bed at the same time each night. • Get up from bed at the same time each day and try to avoid ‘lying in’. This helps to keep your body clock synchronised to a regular routine. • G et regular exercise each day, preferably in the morning. There is evidence that this improves restful sleep. • G et regular exposure to outdoor or bright lights, especially in the late afternoon. Light is important for the body as it produces melatonin, which promotes sleep. • K eep the temperature in your bedroom comfortable. • K eep the bedroom dark enough to facilitate sleep. • Keep the bedroom quiet – try thicker curtains, sleeping at the back of your house or ear plugs to avoid being woken by noise. • U se a relaxation exercise just before going to sleep, or a relaxation tape. • T ry muscle relaxation to help yourself unwind, such as a warm bath or a massage. • Keep your feet and hands warm. Try wearing warm socks and/or mittens or gloves in bed. • I f you lie in bed awake for more than 20-30 minutes, get up, go to a different room (or different part of the bedroom), then return to bed when you feel sleepy. Do this as many times as needed during the night. Things to avoid • Taking exercise just before going to bed. This stimulates the body and can make it difficult to sleep. • Taking caffeine in the evening (coffee, tea, chocolate, etc.). Caffeine is a stimulant and can make it difficult to sleep. • Taking alcohol in the evening or using alcohol to sleep. It has been shown that it can result in broken sleep and cause you to wake up early. • Smoking before going to bed. Nicotine is a stimulant and will keep you awake. • Reading or watching television in bed.
• Going to bed too hungry or too full. • Taking excessive daytime naps or dozing off in front of the TV in the evening. • Poor sleep hygiene.
Acknowledgement
This document was developed by the Cicely Saunders Institute. www.kch.nhs.uk
Corporate Comms: 1079 May 2015
7.
Be Still… Be calm… Drop the shoulders Slowly sigh Out…and…Out Hear the sigh Haaah…. …soft and quiet Feel control returning Peaceful and safe
With thanks to Jenny Taylor, Physiotherapist, St. Christopher’s Hospice