Empowering People with Learning Disabilities: A Nurse-Led Initiative

During Learning Disabilities Week, the first UK Chronic Obstructive Pulmonary Disease (COPD) action plan designed for people with a learning disability was launched in Nottinghamshire.

Chronic Obstructive Pulmonary Disease (COPD) is a common lung disease causing restricted airflow and breathing problems. Symptoms of COPD include shortness of breath and a persistent chesty cough, and they can make daily activities challenging. They can also suddenly worsen, which is known as a flare-up.  

Alarming statistics show that there is a stark health inequality in that individuals with learning disabilities are more likely to have COPD, and respiratory conditions are one of the top causes of death among this group. 

Due to the heterogeneity of the condition, managing COPD is complex, and often requires people with COPD to follow detailed treatment plans, monitor their symptoms, and make lifestyle adjustments. For people with learning disabilities, this can be challenging, especially as current COPD action plans are not available in an accessible format, which may contribute to these poorer health outcomes.  

Queen’s Nurse Hiedi Swift, a Respiratory Nurse, and Sarah Atkinson, a Learning Disability Nurse Practitioner, were working with a mutual patient with a learning disability and COPD diagnosis, and identified this critical gap: there was no accessible COPD action plan tailored to people with learning disabilities in the UK.  

Determined to address this, they took the initiative to develop an accessible resource, consulting patients along the way. This led to the launch of the UK’s first COPD action plan for people with learning disabilities, in Nottinghamshire, during Learning Disabilities Week in July. 

The new COPD action plan is presented in an easy-read format, ensuring people can easily follow guidance on how to manage their condition, from how to recognise the severity of their symptoms to how to use an inhaler correctly.  

The plan is more than a set of instructions; it’s a tool for empowerment. By providing accessible guidance, it enables people with learning disabilities to have a greater sense of autonomy and control over their health. Hiedi and Sarah hope this COPD action plan is used throughout the UK and benefits many people. 

This nurse-led initiative highlights the vital role of nurses in addressing health inequalities and improving patient care. Their close interaction with patients allows them to understand patients’ individual needs, advocate for them, and deliver personalised care.  

This initiative also raises awareness of the crucial need for accessible health resources, in order to tackle health inequalities. Research has shown more than 4 in 10 adults struggle to understand and use information to make decisions about their health. NHS England’s Accessible Information Standard law has promoted the creation of accessible resources, and Easy Health is an online library of almost 400 easy read guides.  

The efforts of Hiedi, Sarah and many others who have developed resources like these serve as an inspiration to us all, to ensure everyone has access to the resources they need to have autonomy over their health.  

Access the COPD Action Plan here.

Additional Resources

NIHR Health Literacy Research 

NHS Health Literacy Resources