I apologise in advance for the length of this post but I am desperate and lost. Any advice is welcome.
My husband has severe COPD and I am really concerned about him. He is 52 and was diagnosed several years ago. He still smokes around one cigarette’s worth of tobacco a day but is increasingly struggling to inhale.
He was supposed to have his annual assessment with the COPD clinic March last year but it was cancelled due to COVID.
In the year before this he had declined markedly so I was worried that his assessment was cancelled – I had hoped a change in his medication could have helped him.
In the year since then he has declined even more – and quite rapidly. To explain his current condition:
•He is breathless all the time – even when resting
•Usually his breathing is more like gasping breaths
•His voice is very weak
•He is tired all the time
•He spends around 16 hours in bed each 24 hour cycle
•He wakes frequently and has to sit up and use his inhaler. It takes him about 15 minutes to catch his breath enough to be able to sleep again.
•He has a headache most of the time
•He has bouts of sneezing that can last for about 20 seconds
•He has very little appetite and has lost several stones in weight. His BMI is 14. He sees a dietician and is prescribed Fresubin, a high energy, oral nutritional supplement drink, which he takes regularly. His skin is hanging off his bones where he has always been of a muscular build (he was a bricklayer)
•He is extremely irritable and gets confused or mixed up easily
I had to call 999 one time when he couldn’t breath at all. By the time the ambulance arrived he had managed to get control of his breathing but the paramedics still wanted to take him to hospital because of the way he was breathing. They were shocked when I told them that was his normal breathing (over the last couple of years) and said he had to see the doctor next day if he didn’t want to go to hospital. Next day the doctor prescribed him a short course of steroids and a course of antibiotics. He was more like himself while taking them but returned to his breathless state when they were finished.
He currently has a blue inhaler for general use and a Relvar Ellipta inhaler (92/22µg) for use once a day. He uses both as prescribed but is running out of his blue inhaler too quickly.
He eventually had his annual assessment with the COPD clinic on 23 March 2021. It was conducted by phone and lasted less than a minute. When he told the nurse that he had gotten a lot worse and was running out of his inhaler too quickly she booked him an appointment with the doctor so they could change his prescription.
Our home circumstances:
He lives in central Scotland with myself and our 4 children, three of whom are dependents and 2 of whom have support needs (Down’s syndrome and Muscular Dystrophy – FSHD)
I am very concerned that he is not getting the care that he could be getting and don’t know what to do about it. He is very proud and would be embarrassed to say how bad he is. When I try to talk to him about it he becomes annoyed with me and when he becomes annoyed he struggles to breathe. I believe that if the health care professionals had a face-to-face appointment with a spirometry test they would realise how bad he is. He has no flare-up plan or rescue pack