Charity left ‘staggered’ by High Salvington man’s lack of funding

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A CHARITY has urged a health trust to reconsider its decision to refuse funding for a vital piece of equipment for a High Salvington man.

Jon Hastie, who has Duchenne muscular dystrophy, had his application for a £4,000 cough assist device turned down by NHS Sussex.

Because of his muscle-wasting condition, Jon’s ability to cough has become severely impaired, putting him at great risk of coughs and colds, which can develop into pneumonia.

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said it is “staggering” the PCT has refused the application.

He said: “Time and time again we are told by patients with muscle-wasting conditions that access to a cough assist machine has made a critical impact on their health. For men like Jon with Duchenne, chest infections can become a life-threatening problem as the condition progresses.

“Treatment on a high dependency ward can cost thousands of pounds each day. It is, therefore, staggering that primary care trusts refuse to invest in this vital equipment. The cost of a cough assist for Jon could be covered by preventing just one hospital admission for him as his condition progresses. We strongly urge NHS Sussex to review its decision.”

Consultants at the Royal Brompton Hospital, where Jon, 30, is treated, made the application to NHS Sussex, the area’s primary care trust, for the cough assist device.

The Individual Funding Request Panel turned the application down on the grounds “the evidence of the proposed treatment is weak”, which Jon, of Furze Avenue, disputes.

Without a cough assist machine, Jon said he would need to admit himself to Worthing Hospital, which has one of the devices, each time he suffers respiratory problems.

Lack of effective treatment could lead Jon to need a tracheostomy which would cost the NHS between £70,000 to £90,000 a year in full-time care from nurses.

He sad: “Without this machine, thousands of pounds of NHS money would need to be spent on me – all I am asking for is a machine which costs £4,000.

“I have made an appeal to the panel, stressing why the funding should be given. I do not believe they had a very good grasp of the condition and the device, so I have urged them to reconsider the evidence presented to them.”

Phillippa Farrant’s son Daniel, who lives in Eastbourne, has one of the “vital” cough assist machines.

Daniel, 19, was given his machine by the Lane Fox Unit at Guy’s and St Thomas’ Hospital, where he receives treatment, after he suffered pneumonia.

Phillippa said: “It’s clear the cough assist machine was vital for Daniel. He lives independently and it gives me great peace of mind knowing he is able to use it to help alleviate respiratory problems which could prove fatal.”

*Earlier this year, the Muscular Dystrophy Campaign revealed NHS authorities across the south east are wasting up to £2.2million every year on avoidable emergency hospital treatment.

The charity said it was a “direct result of failure to invest adequately in ongoing specialist treatment to manage the conditions”.