My battle for a COPD diagnosis – and what helped change my life
Speaking on World COPD Day, Katy Brown, 65, from Bristol, reveals how she struggled to get a COPD diagnosis during the pandemic, the challenges she faced and what has helped her.
Looking back, I was probably struggling with my breathing for at least three years before I was finally diagnosed with chronic obstructive pulmonary disease (COPD). And even then, it seemed to take ages to get a straight answer. Finally, after pushing and pushing, in February 2021, a respiratory nurse gave me a very offhand diagnosis over the phone.
My mother Gina had COPD and died from the condition, so I knew what I was facing, but I still had so many questions. The country was in lockdown, so I couldn’t get a face-to-face appointment with my GP and I wasn’t given any information or support. I wasn’t given a spirometry test, a key breathing assessment used to diagnose COPD, as they’d been suspended because of the pandemic.
Taking its toll
I had never felt so alone. Being so constantly breathless meant I had to give up on the job I loved as a nursery assistant. I got tired very easily, and although I might come across as a force of nature, I often have to take a nap in the middle of the day. The constant breathlessness and struggling often just to get up the stairs had a terrible impact on my mental health, and I suffered from panic attacks as a result.
It felt like I’d been robbed of so much. I knew there was no cure for COPD, but getting that diagnosis would have felt so much better if I’d been given the tools to try and manage my condition myself.
Asthma + Lung UK’s Breathe Easy group was a lifesaver. It was with the support of my face-to-face group in Weston-Super-Mare that I was encouraged to badger my GP about getting referred for a course of Pulmonary Rehab. It’s a breathing and activity course recommended for people with COPD, which for me was a complete game-changer, helping me to breathe better. I also attend a virtual Asthma + Lung UK support group called Motivational Mondays which is the best thing ever for lifting my mood.
We need change
But more needs to be done to support and guide people with COPD, and that begins with diagnosis. According to Asthma + Lung UK’s latest research, taken from a survey of 6,500 people with COPD, it takes an average of five years for someone to get diagnosed. This is primarily because there is so little awareness of the symptoms. These include constant breathlessness, wheezing and coughing as well as difficulties carrying out everyday tasks like doing the shopping. It doesn’t help that spirometry, which doctors need to diagnose and monitor the condition, still hasn’t been reintroduced in parts of the country since lockdown, and that needs to change.
The stress of living with an incurable disease that nobody has ever heard of certainly takes its toll. I’ve felt forgotten, overlooked and invisible. But Asthma + Lung UK’s support groups have really helped me to cope.
A better quality of life
I’m now campaigning for COPD to be taken more seriously. Everyone needs to understand the symptoms so they know when to see their GP, and healthcare professionals need to know too so they can refer people for an early diagnosis. Once people are diagnosed, they need to get the care they’re entitled to. Asthma + Lung UK’s survey showed that four out of five people with COPD still aren’t getting the level of care recommended by the National Institute of Clinical Excellence (NICE). This simply isn’t good enough. Everyone diagnosed with the condition should get help to give up smoking, access to pulmonary rehab and a self-management plan. They should also be supported with other conditions, as well as given the flu jab and the pneumonia vaccine free of charge.
I’d encourage anyone with possible symptoms to see their GP. If you are diagnosed, Asthma + Lung UK’s COPD passport, a five minute online test, can identify what support you might need. Take it to your next appointment with your GP to discuss the results. By getting an early diagnosis and the right support, you’ll be able to manage your condition more effectively and enjoy a better quality of life.
For more information on the COPD survey, visit Delayed Diagnosis and Unequal Care
We empower people with lung conditions to make changes that can be transformative.
Please donate now to help make sure people with lung conditions can live well this year.
Other Your Stories posts you may like:
Other posts you may like
Our amazing supporter, Gerard, sadly lost his wife Margaret to bronchiectasis in October 2023. This year he took on a special challenge to remember her and raise awareness of this condition. Here he tells us all about the challenge and what it meant to him.