COPD and learning disability: common conditions made complex

Chronic obstructive pulmonary disease (COPD) is a chronic health condition in which airflow is obstructed and air cannot easily escape the lungs.  It is a condition that affects 2.4% of people with learning disabilities.

Karen Spillett, deputy head of health advice at Asthma + Lung UK, says COPD includes long-term (chronic) bronchitis and emphysema. Airways are narrowed because the lung tissue is damaged, mucus blocks part of the airway, and the airway lining becomes inflamed and swollen. This makes it harder to move air in and out, which can cause people to feel short of breath.

COPD “affects people in different ways”, she says. “Some people with the condition have mild lung damage and few symptoms. Other people have very damaged lungs and can feel very breathless and limited in what they’re able to do.”

Signs and symptoms of COPD

COPD usually develops as a result of breathing in a harmful substance such as cigarette smoke. Long-term exposure to dust, fumes, chemicals and even air pollution can also cause someone to develop the condition. There is evidence to suggest that it might run in families, too, says Ms Spillett.

Symptoms of COPD include shortness of breath when carrying out everyday activities, such as going for a walk or doing the housework, a long-lasting cough, wheezing, and coughing up more phlegm (mucus) than usual. If someone experiences any of these symptoms, it’s important to see their GP, says Ms Spillett.

COPD is diagnosed with a breathing test, called spirometry, which involves breathing hard into a machine that measures lung capacity. She says there may also be a chest x-ray and blood tests. People with COPD are at higher risk of other health problems such as lung infections, like the flu or pneumonia, lung cancer, heart problems, weak muscles and brittle bones, depression and anxiety.

COPD and people with learning disabilities

People with learning disabilities have “poorer health and healthcare access than the general population”, says Lisa Oluyinka, senior lecturer in mental health nursing and learning disability nursing at the University of Greenwich, London, and a learning disability nurse by background, and a Queen’s Nurse.

“As a result, they experience higher rates of chronic conditions, including pulmonary/respiratory conditions and shorter life expectancy than the general population.

“Diagnosing and managing any health condition is difficult for both the person with the learning disability and their health professionals, and this is a contributory factor in the shorter life expectancy of this population,” she says.

• Check out our article series: Common conditions made complex

What is the impact of COPD?

“The burden of COPD does not just affect the patient, but their families and the professionals working with them,” says Ms Oluyinka. “As the disease progresses, quality of life reduces. They start to find the basic activities of daily living tedious to achieve.

“If they are dependent on others, the carers also find supporting the individual more challenging due to the decline in health, especially as they run out of breath very quickly, even with very little movement. This can lead to irritability and depression in the sufferer, whether they have a learning disability or not,” she says.

COPD is not curable, but symptoms can improve by not smoking, avoiding exposure to air pollution and getting vaccines to prevent infections. It can also be treated with medicines, oxygen and pulmonary rehabilitation.¹

How to manage COPD in people with learning disabilities

Alongside treatment and medication, there are things that people can do to self-manage COPD. “This can be more difficult for people with a learning disability, often leading to poorer health outcomes,” says Ms Spillett.

She says it is helpful for people with COPD to understand and recognise when their condition deteriorates or changes. Seeking help early if someone experiences any new symptoms can have a big impact on their experience and outcomes. Having a self-management plan can also help someone manage their COPD. People can download a free copy of a self-management plan on the Asthma + Lung UK website.

“Easy read resources can be helpful to help people with learning disabilities understand the symptoms and changes they need to look out for,” she adds. “It can help people identify their symptoms, know their medication, and how to cope with flare-ups. It can also make day-to-day life easier and could reduce the risk of someone needing to go into hospital.

“It’s important to agree on a plan with a doctor or nurse, and it should be reviewed each year.”

When someone with COPD has a worsening of their symptoms—called a flare-up or acute exacerbation—it is important to follow their self-management plan, says Ms Spillett. Sometimes, people with COPD are given a rescue pack of steroids with antibiotics to keep at home. These come with clear instructions about when and how to use them. If someone is unsure how to manage their flare-up, she says it is safest for them or their caregiver to speak to their GP surgery or 111 if they are closed.

Inhalers are usually used to manage COPD when it is stable, and “it’s important to take them regularly as prescribed”, says Ms Spillett. “But teaching inhaler technique can be more difficult when someone has a learning disability. However, all people with COPD and their carers must understand how to use inhalers. A healthcare professional should check this during an annual review for COPD. Asthma + Lung UK has a range of inhaler videos showing how to use different inhalers safely.”

People with COPD are also advised to quit smoking. A local stop smoking service can offer extra help and support to give up smoking. “The best way to quit smoking is by using specialist help and stop smoking treatments. People who use treatments alongside stop smoking support are around three times more likely to quit,” says Ms Spillett.

People with COPD are also advised to get their flu, pneumonia, and COVID vaccinations. If eligible, they should also get their RSV vaccination. To keep well with COPD, it is important to eat well and be proactive about managing other chronic conditions, says Ms Spillett.

If someone has COPD, being active and exercising can help them to improve their breathing, fitness and quality of life. “The best way to learn how to exercise at the right level is to take part in Pulmonary Rehabilitation (PR). This programme includes exercise classes for people with long-term lung conditions, information about looking after their body and lungs, advice on handling their lung condition and techniques to manage breathlessness,” she says.

Person-centred care is key

Lisa, senior lecturer in mental health nursing and learning disability nursing, says individuals can do breathing exercises to help with shortness of breath. Rest is also important to “replenish health”, she says. “It’s not about how many hours, it’s about the quality of that rest that matters.”

In addition, they are advised to avoid anything that can affect breathing, such as dust, heavy perfume, antiperspirant sprays, fumes, and strong cleaning products. Houses must also be well ventilated to let in fresh air.

She adds that cold weather can “actually make their COPD worse” for some. Therefore, individuals should “dress appropriately for the weather.”

Ideally, the individual will have a health passport, which is a document which tells health and social care staff about a person’s needs, such as medication, and any health conditions, such as COPD.

If medication compliance is an issue, the multidisciplinary team, agencies, families, and carers need to come together and consider what can be done to encourage compliance. She says this could include looking for medication that needs to be taken less frequently or liquid medication if the individual has difficulty swallowing tablets.

“People with learning disabilities have exactly the same symptoms and the same challenges as everyone else who has COPD. But because they have additional needs, it makes them more vulnerable and increases the health inequalities they might face,” says Lisa.

Person-centred care is important, she says. “You need to look at the person in front of you – don’t just see the COPD, see the whole person and how the COPD might be adding additional problems to their daily lives.”

And she says it is the responsibility of every professional that comes into contact with the individual – not just their COPD specialist or GP – “to pay attention to this person, and to make sure they get the best possible care they can give them, to contribute to them having a good quality of life”.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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