A HIGH Salvington man fighting for a vital piece of equipment has been left devastated for a second time.
Jon Hastie has Duchenne muscular dystrophy, a life-limiting muscle-wasting condition which significantly affects breathing and heart muscles.
He made an application to NHS Sussex for a £4,000 cough assist device earlier in the year. His original request for funding was turned down in September, and on Tuesday, Jon was told his appeal was also unsuccessful.
Jon, 30, of Furze Road, said: “I’m so upset, frustrated and obviously worried about the health risks I face. The PCT think they know more about my condition than the experts – they don’t.
“Aside from whether they think the machine is life-saving, they haven’t considered the savings that could be made by me having a cough-assist device. It makes no financial sense.”
Jon’s ability to cough has become severely impaired, putting him at risk from coughs and colds, which can develop into pneumonia.
Without a cough assist machine, Jon would have to admit himself to Worthing Hospital, which has one of the devices. He estimates hospital stays for respiratory conditions would cost the NHS between £70,000 to £90,000 per year.
Consultants at the Royal Brompton Hospital made the original application to NHS Sussex.
A spokesman for NHS Sussex said: “Mr Hastie’s request for a cough assist device was re-considered by our Individual Funding Request Panel which took into account evidence previously considered in this case, further evidence submitted by Mr Hastie for the case to be re-considered, and a new evidence review conducted for the panel by the London and South East Regional Medicines Information Unit at Guy’s Hospital.
“Having thoroughly reviewed all the relevant factors, the panel made the difficult decision not to approve funding. This decision was made on the basis that there remains very little clinical evidence to indicate the cough assist device prevents deterioration or has an impact on survival or quality of life.”
Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said: “It’s extremely disappointing the PCT has refused Jon this vital piece of equipment once again. Regardless of the financial savings, it is a simple case of helping a young man live a longer and healthier life. I would urge the PCT to urgently reconsider this decision.”
The charity said it can make a small grant available to Jon, but does not have budgets to cover “things the NHS should be providing”.
Jon added: “I’ve been contacted by an American woman who lost her son to Duchenne. She’s devastated but has offered to send me his cough device, so we’re looking into the possibility.”
Jon plans to make a complaint to NHS Sussex, and take his case to the ombudsman.