To qualify for a cough assist machine on the NHS, Joe, now 24, and Steve, now 25, were told they either had to have a condition that was considered very rare, or that their experience of the condition they had was worse than everyone else who had it. Duchenne muscular dystrophy does not meet the CCG definition of a rare condition, and I believe it is virtually impossible to prove that any one experience of Duchenne muscular dystrophy is worse than another. It would be the equivalent of saying Steve is worse than Joe, giving Steve a cough assist and seeing who survived the longest.
After several refusals from the CCG, one of which was sent to Joe while he was in intensive care following airways obstruction due to a mucus plug, I started to explore other ways of getting access, calling on my local MP and friends to help. Joe eventually received his cough assist machine through an NHS England pathway that provides the equipment to people under 19 – something I, nor the boys’ physio, had previously not known about or been told. Steve managed to get his from the CCG following pressure from medical experts and our MP. No explanation was given for the change in the decision.
Joe and Steve use their cough assist machines daily. This maintains the flexibility of their respiratory muscles. In the event of a cold, the machine enables mucus to be sucked back up from the upper respiratory tract, preventing the formation of a mucus plug and preventing the mucus from travelling further down into the lungs and causing a chest infection. This is what the human cough is for.
Steve and Joe haven’t been admitted to hospital since 2015, when they received their cough assist machines. For us, that’s one of the best things about it. If they have a cold, we have the weapons to fight off the potential chest infection. It means that they can continue to live their lives. It is not acceptable for the CCG to see chest infections and hospitalisations as an inevitable part of being in your twenties and having Duchenne muscular dystrophy.
I despair that cough assist machines may not be available to those who need them.
Young men like Steve and Joe have an expectation of a life to live. They don’t want to just be sitting at home doing nothing. A cough assist machine enables them to do things that others do. It’s essential for mental health, as well as physical health.