Megan’s story: Caring for my grandmother with lung disease and fighting for change

Becoming a full-time carer at just 13 isn’t something most young people expect. But for me, it became a defining part of my life when I stepped up to care for my grandmother as she battled a serious lung disease.

That experience not only shaped who I am but also sparked my passion for improving support for carers, especially young carers, within the healthcare system.

My journey as a carer began as my grandmother’s health declined. She was diagnosed with Chronic Obstructive Pulmonary Disease (COPD), a lung disease that makes it increasingly difficult to breathe.

Frequent hospital stays became the norm, often due to severe infections that led to pneumonia. With no other option, I became her primary carer, responsible for everything from round-the-clock personal care to emotional support.

Managing her condition required constant attention, helping her maintain a healthy weight, ensuring she took her medication correctly, and watching for any signs of deterioration.

But beyond the day-to-day care, navigating the healthcare system was one of the biggest challenges. There was little clear communication from healthcare professionals, especially when my grandmother was first diagnosed.

Image caption: Young carer, Megan

We were left in the dark about how serious her condition was and how much time we had left together. That lack of information made an already difficult situation even harder.

One of the biggest shocks came when I discovered a ‘Do Not Resuscitate’ (DNR) order in her medical records, something no one had discussed with us or given us a say in.

It was a heartbreaking moment that made me realise just how important it is for carers to be included in these conversations.

These experiences led me to take an interest in respiratory medicine and patient advocacy. Drawing from my own experiences, I started working with organisations like the North East London NHS Foundation Trust (NELFT) to push for better communication between healthcare providers and patients.

I wanted to make sure that other families wouldn’t have to go through the same confusion and frustration we did.

I also became a strong advocate for better support for young carers. Many of us juggle caring responsibilities with school or work, often without enough support.

That’s why initiatives like a carer’s passport, helping carers balance their responsibilities with their jobs, are so important. Workplaces need to recognise the challenges carers face and provide the flexibility they need.

Looking back, my experience as a carer has shaped my determination to push for change. By sharing my story, speaking up for carers, and working with others to improve the system, I hope to help create a healthcare environment that truly values and supports carers.

Ultimately, my goal is simple: to ensure that no carer feels unheard, unsupported, or alone. Because when we support carers, we improve care for everyone.