"Failure to provide specialist equipment at home"

About: West Sussex PCT

(as the patient),

I have Duchenne muscular dystrophy, a muscle-wasting condition which significantly affects breathing and heart muscles. One effect of this is that my ability to cough has become severely impaired, putting me at great risk from coughs and colds, which can develop into pneumonia.

My consultants at the Royal Brompton Hospital made an application to NHS Sussex, the area’s primary care trust, for a cough assist device to help me.

However, the application was turned down with the funding request panel stating “the evidence of the proposed treatment is weak and there are currently no published studies assessing cost-effectiveness”. ,

They turned the application down despite the fact it listed 18 articles by well-respected consultants from the UK and across the world which demonstrate the efficiency of cough assist devices in prolonging life and preventing hospitalisation

This decision makes no financial sense.providing this machine would allow me to continue to treat my condition at home and avoid costly and planned hospital admissions. The cost of a cough assist machine is £4,000, to stay in hospital for just one week would cost much more than that.

It is extremely frustrating and upsetting as I know other people with my condition in other parts of the country have received these machines

Do you have a similar story to tell? Tell your story & make a difference ››