The short answer
- A flare-up is a change from their own usualMore breathless than they normally are, more phlegm or a change in its colour, more wheeze, more tiredness. The comparison is with last week, not with anybody else.
- The plan comes from the respiratory team, not from a websiteA written plan says what a flare-up looks like for this person and what to do. If there is a rescue pack in the cupboard, the prescriber decides what starts it.
- Home oxygen treats low blood oxygen, not breathlessnessIt is prescribed after blood oxygen tests. Somebody breathless whose oxygen levels are not low will not be helped by it, and nobody uses oxygen prescribed for someone else.
- Oxygen makes a fire burn far more fiercelyNo smoking by anyone in the house, naked flames three metres away, heaters and appliances one and a half metres away, and no oil-based creams.
Carers on PrimeCarers charge £18 to £25 an hour, with our fee included, against £28 to £35 at an agency. Nothing here replaces the plan your relative's own GP or respiratory nurse has written for them.
Chronic obstructive pulmonary disease is one of the long-term conditions covered on our health conditions pillar, and it shares breathlessness and swollen ankles with heart failure at home. The people who treat it are the GP, the practice or respiratory nurse, and sometimes a community respiratory team. A carer is not one of them and does not treat COPD.
What a flare-up is
A flare-up is a change from their usual, so it helps to know their usual
A flare-up, which the respiratory team may call an exacerbation, is a spell where symptoms get worse than they normally are and stay worse. Asthma + Lung UK lists the changes to look for. What makes them a flare-up is that this is worse than this person's ordinary week.
More breathless than usual
The change that matters most
More phlegm, or a change in its colour
Often an infection
More wheezing, and far more tiredness
Easy to put down to a bad week
It has not settled in a day or two
When to act rather than wait
Cold air, air pollution, pollen and smoke can all make things worse, and so can a chest infection. Keeping the house warm and free of smoke and strong fumes is part of the everyday care, and a carer holds that steady without anybody having to think about it.
The plan and the rescue pack
The self-management plan, and why it has to come from their own team
Much of what a family needs to know is already written down for their relative in particular. A COPD self-management plan sets out what this person's usual looks like, what a flare-up looks like for them, and what to do when one starts. It is written with the GP, the practice nurse or the respiratory team, because the answer depends on their lungs and everything else they take.
- 1
Ask for a written self-management plan if there is not one
At the next reviewIt is a short document, and the thing to reach for before anything found online. Asthma + Lung UK publishes a blank plan that is filled in with a healthcare professional rather than at the kitchen table. - 2
Ask what the rescue pack is for, and what starts it
Ask directlyThe NHS says a doctor may give a supply of steroid tablets to keep at home to take as soon as a bad flare-up begins, and antibiotics for the signs of an infection. It is started only when the plan says a flare-up has started, so ask at the review what counts. - 3
Put the plan where a carer can read it
Same dayA private carer is not given access to NHS records. To notice a change and act on it they need the plan, the usual inhalers and their times, and the number to ring. - 4
Ring the number on the plan when something changes
Do not wait for the reviewThe NHS advice is to contact the GP or care team if symptoms get suddenly worse or new symptoms appear between check-ups. A phone call early in a flare-up is a smaller thing than an admission a week later.
A carer can prompt medicines, watch them being taken, write down what was taken and when, and flag that an inhaler is running low or the technique has slipped. What carers can and cannot do with medication covers where that boundary sits.
Breathlessness and panic
Breathlessness, the fear that comes with it, and pulmonary rehabilitation
Being unable to get a breath is frightening, and fear makes breathing faster and shallower, which makes the breathlessness worse. Asthma + Lung UK describes the loop: a worrying thought makes you anxious, that makes you feel breathless, and that brings on a tight chest and fast breathing.
What helps
- A position that takes the weight off the upper body: leaning forward onto a table with the head and arms on pillows, or leaning back against a wall with the knees slightly bent
- Breathing out slowly through pursed lips, and breathing out on the effort of a task rather than holding the breath through it
- Pacing, which means counting the movement to the breathing so a walk across the room is steady rather than rushed and then abandoned
- Asking about pulmonary rehabilitation, an exercise and education course the NHS describes as two or more group sessions a week for at least six weeks
- Asking the respiratory team about a handheld fan, one of the things respiratory services teach for breathlessness
What tends to make it worse
- Holding the breath through the hard part of getting up or getting dressed, which people do without noticing
- Stopping moving altogether, when the NHS says exercising regularly can improve symptoms and becoming slightly breathless is not dangerous
- Treating the panic as a separate problem from the breathing, when each one feeds the other
- Reaching for oxygen because somebody feels breathless, if their blood oxygen is not low
- Smoke, strong fumes, very cold air and very hot air, all of which can set symptoms off
Pulmonary rehabilitation is worth pushing for. A GP or another health professional refers to it, and it combines physical training with education about the condition, dietary advice and emotional support. Somebody who finishes a course knows more about their own breathing than a relative can teach them, and a carer's job afterwards is to keep the exercises part of the week.
What a carer does
The ordinary work that leaves breath for the rest of the day
There is no treatment for COPD that a carer gives. What a carer does is take away the tasks that use up the day's breath, so what is left goes on the things your relative wants to do. Washing and dressing, the stairs, shopping and hoovering are the jobs that use up the day's breath before eleven in the morning.
- Morning
Getting washed and dressed without spending the whole morning on it
This is where most of the effort goes. A carer working at their pace, with rests built in, keeps the morning from being the hardest thing they do all day.
- Breakfast
Inhalers taken, and taken properly
Technique slips over the years, and an inhaler used badly delivers less than it should. A carer can prompt the dose, watch how it is taken and tell the nurse it needs checking.
- Daytime
Shopping, laundry, the bed and the stairs
The heavy, repetitive jobs, done by somebody else, so the breath left over goes on a walk to the shop or an afternoon with a grandchild.
- Any day
Noticing the change, and reporting it
More phlegm, a colour change, more breathless than yesterday, ankles up. A carer seeing somebody several times a week can spot it and ring the number on the plan.
- Night
The nights, if the nights are the problem
Breathlessness and coughing at night wear a household down, and a family carer sleeping badly is a problem in its own right.
Our guide to personal care sets out what washing and dressing help covers, what a carer can do in an hour, two hours or half a day shows how much fits into a visit, and overnight care covers a waking or a sleeping night. If you want the housework and the shopping taken off a relative who is out of breath by the time the kettle boils, you can search for carers near you and compare their rates before committing to anything. Every carer has had an identity check, a right to work check and an enhanced DBS check on the Update Service, has been interviewed online, and is insured while they work. What a carer says about their experience of COPD is their own account on their profile, so ask them and check what matters to you. If your relative has just come out of hospital, hourly care after a hospital stay covers the first few weeks.
How oxygen is prescribed
Home oxygen is a treatment for low blood oxygen, given after an assessment
This is the part most often misunderstood, and getting it wrong causes needless distress. Asthma + Lung UK states it plainly: oxygen therapy is a treatment for low blood oxygen levels, not breathlessness. In COPD the breathlessness usually comes from the difficulty of moving air in and out rather than from a shortage of oxygen in the blood.
The words the respiratory team will use
- Assessment
- Blood oxygen is measured first. The NHS describes blood tests and a sensor clipped to a finger or earlobe, and possibly a walking test. Asthma + Lung UK describes two blood gas tests a few weeks apart.
- Concentrator
- A machine about the size of a bedside table that takes oxygen out of the air in the room. It runs off the mains and is used for long hours, including while asleep.
- Cylinders
- Large ones for short spells, and portable ones weighing two to three kilos that hold up to about three hours. The NHS notes that portable cylinders are not suitable for everyone.
- Flow rate
- How many litres a minute of extra oxygen is given. Whoever prescribes it sets it, and should tell you what it is and how many hours a day to use it.
- Long-term oxygen therapy
- The NHS says long-term oxygen treatment should be used for at least 15 hours a day, a bigger commitment than families expect on first hearing the words.
Two points follow. Nobody should use oxygen that has not been prescribed for them, including a cylinder left over from somebody else. And if your relative is breathless and has not been assessed, the route is the GP or the respiratory team. The NHS page on home oxygen treatment sets out the assessment and the equipment, and Asthma + Lung UK explains how home oxygen therapy is prescribed.
Living safely with oxygen
The fire safety rules, and the one thing a carer must never change
Oxygen does not burn, but it makes everything else burn faster and more fiercely, which is why the rules are as firm as they are. These are not suggestions to weigh up. Each one below comes from the NHS, the fire service, the MHRA or the oxygen supplier.
A room with home oxygen running in it, seen from above
Drawn to scale. The two rings are the distances the NHS gives for a home oxygen device, measured from the person using it.
- 1.5 m
- Heaters, hairdryers, electric razors and other electrical appliances stay outside this ring.
- 3 m
- A gas cooker, an open fire, a candle or any other naked flame stays outside this one.
Nobody smokes in the house
Not the person on oxygen, not a visitor, and not in another room. That includes e-cigarettes, which are not charged or used near the equipment either.
Twenty minutes before any flame
Oxygen stays in clothing for up to twenty minutes after the equipment is switched off. Clothes are aired in the open for that long before anyone goes near a flame.
Water-based creams only
Oil-based emollients such as petroleum jelly are a fire risk near oxygen. Dried emollient residue in clothing and bedding makes the fabric catch faster, and washing reduces it without removing it, so the pharmacist or nurse is the person to ask for an alternative.
The tubing runs along the wall
Long tubing lets somebody move around the house, and it is also what they catch a foot in. It is kept along the skirting and out of doorways, and never trapped under a chair leg, because a kinked tube slows or stops the flow.
The room is ventilated and the equipment is switched off when it is not in use
Concentrators run warm, and the room they sit in needs air moving through it.
Working smoke alarms on every floor
The oxygen supplier checks the house before the equipment goes in, and the local fire and rescue service will come out, give advice and fit alarms.
The rule with no exceptions: Nobody but the respiratory team changes the flow rate. Not the family, not a carer, not the person if they feel short of breath.
Distances and equipment rules from NHS home oxygen treatment guidance; smoking, clothing and alarm advice from Greater Manchester Fire and Rescue Service; emollient advice from the MHRA drug safety update on emollients and fire risk; flow-rate advice from the home oxygen supplier Vivisol.
Equipment care is a different thing from treatment, and a carer can do plenty of it: keeping the tubing clear and out of walkways, keeping the room ventilated, checking nothing flammable has drifted inside the distances above, keeping the concentrator away from a wall or a radiator, and keeping water-based creams in the bathroom instead of oil-based ones. Anything that crosses into clinical territory is another matter, and delegated healthcare tasks explains who may hand a healthcare task to a carer, what training and sign-off come first, and who stays accountable.
Your local fire and rescue service will give advice on a house with oxygen in it and can fit smoke alarms, and Greater Manchester Fire and Rescue Service's home oxygen page is a clear example of what they cover. If the tubing has become a trip hazard or the stairs are the problem, ask the council for an occupational therapist, and the right equipment to aid the elderly covers what helps.
Questions
Questions families ask about COPD and home oxygen
A flare-up, or exacerbation, is a spell where symptoms get worse than usual and stay worse. Asthma + Lung UK lists feeling more out of breath than usual, coughing more, more phlegm, a change in its colour, more wheeze, tiredness, finding it harder to be active, confusion and swollen ankles. The comparison is with that person’s own normal week, and their plan says what counts as a flare-up for them.
A rescue pack is a short course of steroid tablets, antibiotics, or both, kept at home so treatment can start as soon as a flare-up begins. The NHS says a doctor may give a supply of steroid tablets to keep at home for a bad flare-up, and antibiotics for the signs of an infection. Starting it belongs to the plan and the prescriber, not to a carer. A carer can prompt prescribed medicines, record what was taken, and ring the number on the plan.
Not on its own. Asthma + Lung UK states that oxygen therapy is a treatment for low blood oxygen levels rather than for breathlessness, and that somebody with problems with breathlessness but without low blood oxygen levels is not being offered the right treatment. In COPD, breathlessness usually comes from the difficulty of moving air in and out. Nobody should use oxygen that has not been prescribed for them.
The NHS says not to smoke and not to let anyone smoke near you while using the device, to keep three metres from open flames such as a gas cooker, one and a half metres from electrical appliances and heat sources, to keep the room ventilated, to have working fire alarms, and not to use oil-based emollients. Fire and rescue services add that oxygen stays in clothing for up to twenty minutes after the equipment is switched off, so clothes are aired outdoors before anyone goes near a flame.
The NHS says not to use oil-based emollients while using a home oxygen device, because it is a fire risk. The MHRA has warned that the risk applies to all paraffin-containing emollients whatever the concentration, and cannot be excluded with paraffin-free ones. Dried residue in clothing, bedding or bandages makes the fabric catch faster, and washing at a high temperature reduces the build-up without removing it. Ask the pharmacist or nurse for an alternative.
The ordinary work that uses up breath: washing and dressing at the person’s pace, shopping, laundry, changing beds, cooking, keeping the house warm and free of smoke, prompting inhalers and recording them, keeping oxygen tubing clear, and noticing early that something has changed. Carers on PrimeCarers charge £18 to £25 an hour, with our fee included, against £28 to £35 at an agency. A carer never changes an oxygen flow rate.