24
Pulmonary rehabilitation Patient information booklet
Pulmonary rehabilitation
Patient information booklet
This booklet contains all the information that will be covered in the education component of your Pulmonary Rehabilitation course. Feel free to read through the information before the course starts and use it as a reference both during and after the program. We hope you find it useful!
1. Physiotherapy Advicea. Exerciseb. Breathing controlc. Clearing your chestd. Managing Shortness of breath
2. Pharmacy Advicea. Inhalers
3. Dietician Advicea. Food guideb. Maintaining your energy and a healthy weightc. Coping with a dry mouthd. Coping with changes to taste
4. Occupational Therapy Advicea. Conserving your energyb. Coping with anxiety c. Relaxation Techniques
5. Social Carea. Where to find helpb. Benefits information and contact numbers
6. British Lung Foundationa. Breathe Easyb. Online Resources c. Contact numbers
7. Planning your future carea. Advanced decisionsb. Lasting Power of Attorneyc. Sources of further information
8. Your Notes2
Your pulmonary rehabilitation course
“Why Exercise?!” – Physiotherapy Advice
What are the benefits of exercise?
Improves strengthImproves enduranceImproves balanceIncreases flexibilitySpeed up reaction timesIncreases bone strength and protects against fracturesHealthier heartBone rebuilding, for osteoporosisLowers cholesterol Blood pressurecontrolBoosts the immune systemImproves sleepImproves memoryImprove psychological healthImprovement in quality of life We expect you to be doing exercises at home on the days when you are not in the class.
REMEMBER: Shortness of breath is a normal response to exercise. You may find you get breathless on relatively little exertion; this is probably due to your lung disorder and general muscle weakness. Although we cannot cure your shortness of breath, we hope it will be possible to improve it and help you control it.
Controlling Breathlessness
It is not harmful to do things that make you breathless when you are in control. When you are short of breath, try not to panic as this will make it worse. The techniques described below will help you to regain control.
3
‘Why exercise?!’ – Physiotherapy advice
Controlling breathlessness
Breathing controlYou may have got into the habit of over-using your upper chest and shoulders whilst breathing. This technique encourages you to use your lower chest and requires less energy. Practice this tech-nique when you are not breathless – it will make it easier to use when you do feel short of breath.
TOP TIPS for controlling breathlessness during exercise:
l Don’t hold your breath while exercising or feeling short of breathl Try breathing out on exertion, ‘blow as you go’. For example breathe out as you lift an object or walk up a stepl Pace yourself so that you walk/work in a steady controlled way.
4
1 Make sure you are in a comfortable position and well supported – there are some examples of good positions to use at the end of this section2 Think about relaxing your upper chest and shoulders – if you find this difficult, try sitting in front of a mirror to see the movements3 Breathe in through your nose and breathe out through your mouth4 Breathe at a rate that feels comfortable for you, quickly if you need to, but gently5 Place one hand on the bottom of your ribs/top of your abdomen. As you breathe try to feel a slight expansion in your lower chest. This will give you the feeling of breathing around the waist6 Your rate of breathing will slow down gradually as you regain control.
5
Positioning for managing breathlessness
High side lying, supported with pillows Lean forwards on a table
Lean forwards, relax your arms on Lean back, relax your armsyour thighs
In standing, lean forwards on a support In standing, lean back against a wall, with your feet slightly apart.
Positioning for managing breathlessness
6
What breathing exercises can I use to clear my chest?
If secretions stay in your lungs for too long they can get sticky and also infected. It is important to regularly clear your chest to reduce the risk of infection.
Active cycle of breathing techniqueThis technique can be used at any time and in any comfortable position. It is particularly useful first thing in the morning and last thing at night.
Before starting, get into a comfortable position and use the breathing control technique to gain control of your breathing.
Repeat the cycle 1-4 times, gradually allowing bigger breaths before the huffs.
When the secretions are ready to be cleared, take a deep breath in before huffing or coughing to clear the secretions to your mouth/swallow. Sips of water before huffing may help.
Repeat the cycle until there is nothing more to clear or until you need a rest.
Take a slow, deep breath in through your nose, concentrating on expanding your lower chest. Breathe out in a relaxed way.
Repeat 3-4 times.
To Huff, take a small breath in and force the air out through a wide open mouth, as though
you are misting up a mirror. Repeat twice.
Use breathing control to relax your breathing
again.
Use breathing control to relax your breathing
again.
What breathing exercises can I use to clear my chest?
7
Breathing exercises with a tubeThis is sometimes called tube PEP. Your physiotherapist will give you a piece of green oxygen tubing cut to the right length for you; they will then run through the following breathing exercises.
1 Sit upright or lie on your side2 Take a deep breath in3 Blow out through the green tube4 Repeat this 3 times5 Relax using the breathing control technique6 Continue this cycle for 15 minutes once or twice a day.
Other techniques to help with chest clearance- Drink plenty of water to prevent dehydration. Tea and coffee contain caffeine which stimulates you to pass more water – they are therefore not a substitute for water.- Steam from a bowl of hot water or a hot drink can help move secretions by lubricating the airways.- If you have a nebuliser, nebulised saline can also help lubricate the airways.- Exercising and getting short of breath is very useful in clearing secretions as it increases the rate at which secretions move out of the lungs.
Pharmacy advice: INHALERSThese are used to administer different types of medication to treat lung disease.This booklet explains the different types, how they work and what to look out for.There are lots of different inhaler devices, if you are struggling with your device ask or have any questions speak to your nurse, pharmacist, doctor or physiotherapist.
Fast acting Bronchodilators – Usually BLUESALBUTAMOL Ventolin, Salamol, Airomir, Asmasal, AerolinTERBUTALINE BricanylThese drugs:l Open the airways within 5-10 minsl Can be used for breathlessness or exercise
Possible side-effects include palpations and shakiness
Long-acting Bronchodilators – GREEN
SALMETEROL Serevent
FORMOTEROL Oxis, Foradil
These drugs:l Open the airways and last longerl Taken regularly (usually twice a day)Possible side-effects include palpitations and shakiness.
Steroids – usually BROWN, RED, ORANGE
BECLAMETHASONE Becotide, Becloforte, Qvar, Beclasone, Aerobec, Asmabec
BUDESONIDE Pulmicort
FLUTICASONE Flixotide
These drugs:l Reduce swelling and airway inflammationl Must be taken regularly (usually twice a day) Possible side-effects include dry mouth, hoarseness and oral thrush. To prevent these rinse your mouth and gargle water after use.
Combined Preventer (steroid) and Reliever (long-acting bronchodilator):SERETIDE Flixotide and SereventSYMBICORT Pulmicort and Oxis
Combined Relievers:COMBIVENT Ventolin and Atrovent
Take these drugs regularly, as advised.
Antimuscarinics – Usually plain coloursIPATROPIUM AtroventTIOTROPIUM SpirivaThese drugs:l Open the airways, Atrovent takes 30 minutes, Spiriva will last 24hrsl Taken regularly (1 to 4 times a day)
Possible side-effects include dry mouth and constipation. Use with care if you have open angle glaucoma or prostate problems.
RELIEVERS
PROTECTORS
PREVENTORS
COMBINATION INHALERS
8
9
Dietician’s Advice
Diet and nutrition are important in Chronic Obstructive Pulmonary Disease. It is important to have a balanced and varied diet to maintain your strength and help your body fight infections.If you are overweight your heart and lungs have to work harder to supply oxygen to your body.If you are underweight you will be more prone to infection.People with COPD have weaker bones. This can be due to medication or being less active. Diet and exercise can help this.
Monitor your weightl Try to weigh yourself monthly; look out for signs of weight loss (clothes/jewellery become looser)l If you continue to lose weight seek advice from your nurse or doctor
Dietician’s advice
10
How can I increase my energy and maintain a healthy weight?
l Try not to miss a meal if you don’t feel up to cooking or if you are short of breath:l Use convenience foods l Eat 3 small meals a day and snack often l Eat the foods that take your fancy, don’t worry about the perfect diet l Try soft meals that don’t need much chewing
l Choose full fat or high energy options if you are under weight l For example add cheese, cream and extra butter to your meals l Add extra honey, syrups and jam l Make and use fortified milk – whisk 2-4 tablespoons of milk powder to one pint of milk
l Don’t fill up on drinks before or during a meal
l Take nourishing drinks: smoothies, soups, fruit juice, milkshake, hot chocolate, energy drinks.
Nutritional SupportIf you are struggling to eat enough you may be given nutritional supplements. These products provide you with energy, protein, vitamins and minerals.They help to boost your intake between meals but are not a re-placement for meals.There are a range of products in different flavours and styles.
Coping with a dry mouthUsing oxygen, nebulisers and inhalers can cause a dry mouth. This can make it difficult to chew or swallow food, which sometimes leads to taste change. To help with this:
l Choose softer, moist foods - such as fruit sweets, ice cubes made from fruit juice or squash, sugar-free gum
How can I increase my energy and maintain a healthy weight?
Nutritional supportIf you are struggling to eat enough you may be given nutritional supplements. These products provide you with energy, protein, vitamins and minerals.They help to boost your intake between meals but are not a replacement for meals.There are a range of products in different flavours and styles.
11
l Your doctor may prescribe pastilles or saliva sprays if the problem continuesl If you struggle to swallow or are coughing frequently during meals, mention it to you doctor or nurse.
Coping with taste changesTaste change can cause loss of appetite, to help with this:
l If you use a steroid inhaler, rinse your mouth out and gargle water after use to prevent thrushl Look after your mouth; clean your teeth/dentures regularly. Try mouthwash and flossing tool Focus on foods you enjoyl Try sharp and spicy foods, as they have a stronger tastel Experiment with different seasonings/sauces.
Occupational Therapy Advice
Occupational therapists look at all your activities of daily living to see how they can help you manage them as independently as possible. These following information looks at how you can adapt the way you do tasks to make them more manageable.
Conserving your EnergyTop tips– the four P’s!
1 Pace yourselfl Don’t push yourself beyond your limits, only do what is essentiall Spread heavy or tedious jobs out over the weekl Alternate active and quiet jobsl Take rest breaks, particularly after mealsl Exhale on effort (‘blow as you go’).
2 Plan aheadl Consider the best time of day to do things, bearing in mind the effects of medicationl Consider the weatherl Don’t put off stressful activities – it makes it all more difficultl Keep things close to where you use them i.e. tea and coffee next to the kettle
Occupational therapy advice
12
l Anything you need upstairs and downstairs, have two – one in each placel Put things you only occasionally need out of the way.
3 Prioritisel Do important jobs when energy levels are highestl Don’t do unnecessary jobsl Delegate – what can other people help with?l Consider your standard of perfection – is it too high?
4 Posturel Can you sit down to complete tasks?l Work at waist leveland rest your elbows on work tops/tablesl Stabilise your shoulder girdle and lean forwardl Notice where there is muscle tension and release it.
How can I save my energy?
Personal Carel Sit down at the basin while washing, shaving, cleaning teeth – you can lean your elbows on the sinkl Wrap yourself in a towelling robe instead of rubbing dry after washingl Avoid aerosols, strong scents and talcum powderl Get all your clothes ready before getting dressedl Have clothes which open at the front if possible
Domestic tasksl Sit down while washing up or preparing mealsl Leave dishes to dry naturallyl Consider leaving out frequently used items (plate, cup etc) rather than putting them away after usel Use easy to prepare and frozen foodsl Eat in the kitchen if possiblel Slide items across the work top rather than lifting theml Use electrical gadgets such as tin opener, whisk etcl Use a trolley and plan your shop in advance to stop you having to walk back and forth.
13
Equipment can help you to maintain independence and conserve energy – it is not giving in. An occupational therapist can discuss with you about equipment that may be useful. This could include: kitchen trolley, chair raisers, raised toilet seat, shower chair or perching seat, long handled shoe horn or sponge, lightweight kitchen items.
How can I cope with anxieties or worries?
Anxiety is a normal reaction to worry or fear. In these circumstances it is important to learn to manage your body’s response to your worry or stress.
For a lot of people with COPD anxiety is prompted by the feeling of breathlessness. Anxiety in itself causes an array of physical responses including increased rate of breathing, dizziness, palpitations, shaking, sweating. These symptoms can be frightening and be misinterpreted as a more serious problem – this sometimes causes people to have panic attacks.
When we are in a dangerous situation it is normal for the body to initiate the ‘fight or flight’ response. Sometimes this response can be triggered by more subtle types of stress such as, managing a long term condition, feeling short of breath, emotional family or social changes.
What techniques can I use to relax?
Relaxation teaches us to release physical and mental stress or tension. It is important to find a technique that works for you and practise it, so that it is easy to use when you need it.
The following techniques will help you to breathe more effectively, boost energy as you will be less tense, reduced tension related pain, improve sleep quality, and increase confidence for coping with day to day life.
What techniques can I use to relax?
14
1 Breathing Controll This technique is described in the physiotherapy section for gaining control of your breathing. It is effective during times of stress.
2 Progressive Relaxationl Lie on your back, close your eyesl Starting with your feet and working your way up, mentally think about each part of your body l Sense the weight of that body part l Consciously relax this part of your body and let yourself sink into the bedl Work your way up, one part at a time: feet, knees, thighs, hips, abdomen, chest, shoulders, arms, hands, neck, head, face…l Mentally scan your body. If you find any place that is still tense, then consciously relax that place and let it sink into the bed.
Where to find help
Support with personal care or domestic tasks is available – either with private organisations or through social services.
The Adult Social Care Access Point is a single point of access for information, advice and assessment for people with social care needs and their carers. They can:1 Provide advice and information to enable you to access the support you need2 Complete assessments over the phone to establish any social care needs3 Arrange services or refer on for further assessments as required4 Arrange home care, day care and daily living equipment.
Contact details:
Telephone 01273 295555Online assessment www.brighton-hove.gov.uk/accessEmail [email protected] 01273 296372Mini-com 01273 296388
Where to find help
15
Who can I talk to for Benefits Advice?
There is a vast array of benefits and support available. Below are the details of 4 particular benefits/allowances that may be of particular interest. Be aware that these benefits are subject to change and this is not an exhaustive list – if you have any concerns or questions please contact:
Welfare Rights Team Adult Social Care , Brighton and Hove City Council 3rd Floor Bartholomew House, Bartholomew Square, Brighton BN1 1JP
Telephone 01273 291117Advice line: 01273 291116 Wednesday mornings 10am-1pmFax: 01273 291120Email: [email protected]
Attendance Allowance (AA)AA is a benefit for severely disabled people aged 65 years or above, who need help to look after themselves.It is a tax-free benefit that is administered by the Department for Work and Pensions (DWP) and is paid in addition to most other benefits. It is not means tested and does not depend on your NI Contributions.
When applying for this benefit it is good to keep a diary of your needs, as people often underestimate the help they need and the time it takes for them to do things themselves. It is vital to give as much detail as possible so that your claim has a better chance of success.AA is split into two rates. You will get the lower rate (£49.30) if you need help during the day OR the night. The higher rate (£73.60) is paid if you need help in the day AND the night.
Employment and Support Allowance (ESA)ESA is the benefit to meet your living costs if you are too sick or disabled to work. In 2008, ESA replaced incapacity benefit, severe disablement allowance and income support on disability grounds.
Who can I talk to for benefits advice?
16
If you claimed as sick or disabled before October 2008 and you are in receipt of incapacity benefit, income support or severe disablement allowance, the Government will aim to reassess you under the ESA rules at some time between February 2011 and March 2014.
The assessment process for this benefit is known as Work Capability Assessment. A fact sheet is available to guide you through this process.
Personal Independence Payment (PIP)This benefit is still in the planning stages but is due to replace the Disability Living Allowance (DLA). Individuals claiming DLA will be reassessed under PIP, this is currently thought to begin in 2013.
The assessment for this benefit will include a wide range of activities, including an individual’s ability to get around, interact with others, manage personal care, treatment needs and access to food and drink. The process will also include a medical with a health professional.
The new benefit is due to be based upon need not income. It will consist of two components – the care component and the mobility component, both of which will have 2 rates of pay. The final details of eligibility and the application process are not yet confirmed. Details for the existing DLA are below.
Disability Living Allowance (DLA)DLA is a benefit for people with disabilities who look after themselves and/or have difficulty getting around, It is tax-free and paid in addition to most other benefits. It is not means-tested and does not depend on NI Contributions.
When completing the application form make sure you answer the questions as detailed as you can, this will increase your chance of a successful claim. If you ring the DWP for a form they will date stamp it – you have 6 weeks to complete and return the form.
The mobility component has two rates of pay – lower £19.55, higher £51.40. The care component has three rates of pay – lower £19.55, middle £49.30, higher £73.60. A fact sheet is available to guide you through the application.
17
Other sources of help or advice:
Brighton and Hove Citizens Advice BureauHoveTown Hall, Tisbury Road, HoveTelephone: 0845 1203710 www.adviceguide.org.uk
Disability Advice Centre6 Hove Street, Hove Telephone: 01273 203016
Brighton and Hove Carers’ Centre18 Bedford Place, Brighton BN1 2PT Telephone: 01273 746222
The British Lung Foundation (BLF) is a UK charity working for people affected by lung disease. Their aim is to support people with lung disease by helping people to understand their condition, providing support groups and campaigning for positive change in lung health through raising awareness and supporting research.
Breathe EasyBreathe Easy is the support network of the BLF. It includes over 22,000 people and over 200 support groups across the UK. They have regular group meetings, provide help over the phone and have a PenPals scheme to link up people in similar situations.
There is a wealth of information on their website and via their helpline. It is a highly recommended organisations – the information below will help you to get involved!The website includes information on PenPal Schemes, Breathe Easy groups, Exercise, BLF Nurses, BLF web community, campaigns and events, research, becoming a member and access to BLF publications.
www.lunguk.org
Other sources of help or advice:
18
Helpline Advice ServiceThe BLF Helpline service offers Free, Confidential and Impartial advice, information and support on a number of subjects including Travel and Transport, Oxygen, Equipment, Welfare Benefits, as well as many issues relating to over 40 lung conditions
Telephone 0845 8505020Monday to Friday 10am to 6pm Calls charged at your local rate
Planning For Your Future Care
There may be times in your life where you wish to think about the consequences of becoming seriously ill or disabled. This may be at a time of ill health, in response to a life changing event, or because you just wish to plan ahead.
You may want to think about what living with a serious illness might mean to you, your partner or your relatives – particularly if you become unable to make decisions for yourself. You may wish to record what your preferences and wishes for future care and treatment might be, this might help you come to terms with your condition.
Advanced Care PlanningThis is a discussion between you and those who care for you – for example, healthcare professionals, care home managers or family members. During this discussion you may choose to express some views, preferences and wishes about your future care. This is an entirely voluntary process and no one is under any pressure to take any of the steps described on the next page.
Planning for your future care
19
Aspects of Advanced Care Planning
Opening the conversationThe conversation about advanced care planning may be prompted by:l A wish to make plans – just in case something unexpected happensl Planning for the future or for retirementl Following the diagnosis of a serious or long term conditionl After the death of a spouse, partner or friendNot everyone will wish to engage in such a conversation and that is fine.
Exploring your optionsAdvanced care planning can be done when it feels right for you to plan ahead – ask your care provider or someone close to you to have the discussion with you. You may need to seek some support and advice.
You may have strong views on what you would and would not like to happen – for example, some people may say they wish to stay at home should they become unwell. However in some circumstances this may not be realistic.Seeking advice will help you to explore the possibilities.
The wishes you express during this process are personal to you and can be about anything to do with your future care.If you become unable to make a decision yourself, this information will help those caring for you to make decisions on your behalf.
You may want to include your priorities and preferences for the future, for example:l How you might want your religious and spiritual beliefs to be reflected in your carel The name of the person/people you wish to act on your behalf at a later timel Your choice about where you would like to be cared for l Your thoughts on different treatments or types of care you may be offeredl How you like to do things, such as preferring a shower to a bath, or sleeping with the light onl Concerns or solutions about practical issues, for example who will look after your dog should you be unwell.
Aspects of Advanced Care Planning
20
Refusing specific treatmentsYou can make an advanced decision to refuse treatment if there is a specific element of your care that you would not wish to receive in the future. This decision may depend on the circumstances surrounding it and therefore you can specify the situations in which you would like to refuse a particular treatment.
There are rules if you wish to refuse treatments that are potentially life sustaining, for example, ventilation. Such a decision must be put in writing, signed and witnessed. You are advised to discuss such decisions with your health care professional who is fully aware of your medical history. An advanced decision will only be used if at some time in the future you lose the ability to make your own decisions about your treatment.
Ask someone to speak for youYou may wish to name someone who should be asked about your care if you are not able to make decisions yourself. In these circumstances, your health care professional would consult with the person you named. Although this person cannot make decisions for you, they can provide information that will help the health care professionals act in your best interests.This is not the same as legally appointing someone to make decisions for you as a Lasting Power of Attorney.
Lasting Power of Attorney (LPA)A LPA enables you to give another person the right to make decisions about your property and affairs and/or your personal welfare. Decisions about care and treatment can be covered by a personal welfare LPA, but this can only be used when you lack the ability to make specific welfare decisions for yourself.There are special rules about appointing an LPA. You can get a special form from the Office of the Public Guardian (OPG), or stationary shops that sell legal packs. Your LPA will need to be registered with the OPG before it can be used.
21
Let people know your wishesAdvanced Care Planning does not have to be in writing. However the professionals who are involved in your care and members of your family may find it helpful if your wishes and preferences are in writing. It’s a good idea to give a copy to everyone who needs to know – remember to keep your own copy safe.
If you have an advanced decision to refuse specific treatment you must be sure to make sure the people involved in your care know this. Ask your nurse or doctor to help you do this.
Where to find further information
The following information is found on websites. You may be able to get help accessing this through your GP or health worker, your library or at a hospital information centre.
Making Decisions – a guideInformation booklets about the Mental Capacity Act.www.dca.gov.uk/legal-policy/mental-capacity/mibooklets/book-let01.pdfTelephone 02380 878038
Office of the Public GuardianThis office is there to protect those who lack capacity to make decisionswww.publicguardian.gov.ukTelephone 0845 3302900
Preferred Priorities for CareA document which can be used to help write down preferences and wishes for the futurehttp://www.endoflifecareforadults.nhs.uk/publications/ppcform
Advanced Decisions to Refuse Treatment WebsiteA training website for professionals which contains a patient sectionwww.adrtnhs.co.uk
Where to find further information
22
Good Decision Making – The Mental Capacity Act and End of Life CareA summary guidance to introduce people to the MCA and its con-tents and to explain the importance for End of Life Care decision makingwww.ncpc.org.uk
23
Notes
© Brighton and Sussex University Hospitals NHS Trust
DisclaimerThe information in this leaflet is for guidance purposes only and is in no way intended to replace professional clinical advice by a qualified practitioner.
Reference number: 466Publication Date: July 2012 Review Date: July 2014 carer and patient information group approved
C P I G�
