High Salvington man’s machine battle backed by health minister

W36305H11 WH FUNDING REFUSAL PIC S.G. 06.09.2011''Jon Hastie has Muscular Dystrophy had  funding  turned down W36305h11
W36305H11 WH FUNDING REFUSAL PIC S.G. 06.09.2011''Jon Hastie has Muscular Dystrophy had funding turned down W36305h11

THE government’s health minister has agreed to back a High Salvington man’s battle for a vital piece of equipment to improve his quality of life.

Jon Hastie, who has Duchenne muscular dystrophy, took his fight for a cough assist machine to the health minister, MP Paul Burstow, on Thursday (December 15).

He joined forces with Mary Glindon MP, expert health professionals and the charity Muscular Dystrophy Campaign to tell Mr Burstow why this piece of equipment is so crucial.

Jon, 30, of Furze Avenue, said: “Our meeting was very positive – I outlined my case to the health minister and spoke about the benefits and costs that could be saved by having a machine.

“He was very interested and I was surprised when he said he would investigate my case with the PCT himself.”

Cough assist machines can help to ward off potentially fatal chest infections in patients with muscular dystrophy, and reduce emergency admissions to hospital.

Jon’s application to NHS West Sussex for a machine was denied on two separate occasions.

The UK’s leading neuromuscular specialists back the equipment and recommend it for their patients, but many regional NHS Trusts refuse to fund the £4,700 apparatus for home-use, claiming a lack of evidence that the machines are effective. However, the equipment is routinely used to treat patients with chest infections while in hospital.

Jon said: “I think the health minister was very interested in the savings that can be made by having a machine at home, as opposed to the thousands of pounds hospital stays would cost the NHS.”

Nic Bungay, director of campaigns, care and support at Muscular Dystrophy Campaign said: “We are delighted the minister is taking a personal interest in Jon’s case and will be contacting NHS Sussex to discuss the matter. This clearly reflects this issue requires greater consideration and that access to a cough assist machine could have a far-reaching affect on Jon’s health.

“It is time for evidence of the life-changing impact of this equipment on the health of patients with muscle-wasting diseases to be consolidated and recognised.”

NHS Sussex has offered to loan Jon a machine for three months, while it develops a policy on the use of the machines.

A spokeswoman said: “A Sussex-wide policy on the use of such machines is currently being developed.

“NHS Sussex has agreed to take over the cost of the rental of Mr Hastie’s machine for the next three months, until the policy is in place. No decision has been taken yet as to the policy’s contents.

“We want Mr Hastie to receive the care that is right for him. We also need to be sure that we are following processes that are fair and equitable in dealing with competing demands for resources.”