How Barry lives with COPD Emphysema

Barry has been been the frontman and drummer in a reggae band for many years. So it's unsurprising that he brings an infectious and encouraging passion to the weekly music therapy group at North London Hospice Enfield. He’s well known for getting even the most reserved attendee tapping their feet or picking up a tambourine and joining in.

“I love that class,” says 55-year-old Barry. “It gives people a real sense of confidence, inclusion and encourages expression. It gets you out of the house and gives us all something to do that doesn’t revolve around medical appointments."

He says he loves that the class allows him to be in the moment: "everyone that attends leaves feeling better than when they arrived.”

Diagnosed four years ago, Barry is living with COPD Emphysema, a lung condition that causes breathing difficulties. 

It’s a common condition, mostly for middle-aged and older adults, which happens when the lungs become inflamed, damaged or narrowed. The condition cannot be cured or reversed, but for many people, treatment can help keep it under control so it does not severely limit their daily activities. 

In some people, COPD may continue to get worse despite treatment, eventually having a significant impact on their quality of life and leading to life-threatening problems like Barry's.

In recent years, Barry’s COPD Emphysema has caused his breathing to substantially deteriorate. Then, in December 2022, he was admitted to intensive care with breathing difficulties for the third time. It was suggested that he would benefit from hospice support.

Barry says that he was ‘very frightened’ at the prospect: “it was scary for my family too, but my body just wasn’t working, and I knew North London Hospice would look after me. They’d have the care facilities and the expertise to help.”

But he soon realised that the hospice’s support gave him so much more: “sometimes you need to talk to someone, other than your family, and they are always there if I need to talk."

Hospices’ specialist teams, like those at North London Hospice, provide care planning which is tailored to each person. It always aims to help patients achieve ‘the best of life, at the end of life’. 

In Barry’s case this involved regular home visits by specialist nurses, who monitor his medication and have helped him manage his anxiety. Their physiotherapist, Rob, also visits Barry to take him for walks to build and maintain strength. Barry says that thanks to Rob he’s made real progress: “He always encourages me to go just that little bit further!”

Barry attends North London Hospice’s Breathlessness and Fatigue sessions, where he’s learned the coping strategies to help him continue to sing.

“My condition means I often struggle for breath,” says Barry, “but there are six or seven people at each session who are going through the same or similar things as me, and that makes me feel like I’m not alone.

"The sessions have provided me with techniques on how to cope in situations if I panic or get out of breath.”

Barry, who has six sons and a daughter, is once again able to make music with one of his sons, thanks to the support he’s received from the hospice:

“I’ve played the drums since the Boys’ Brigade, and it makes me happy to still be able to play and make music with my son. I do it in stages and he puts it all together.”

“The support of the hospice has been a life saver to me. My world was crumbling around me, and I was at risk of becoming a hermit. The care they are giving me has given me the confidence to be my extrovert self again! They’ve made me realise I can still live my life; I just can’t run around the block anymore!”

Thank you to Barry and North London Hospice for sharing his story.