FAMILIES struggling to cope with the devastating effects of muscle-wasting diseases have taken their campaign for specialist care to Westminster.
Washington and Sunderland West MP Sharon Hodgson has vowed to back their fight for vital facilities, which campaigners say would transform lives while saving the NHS millions in care costs.
They include dad Patrick Bailly, 45, from Nookside, Sunderland, whose son Pascal was diagnosed with the Duchenne form of the disease five years ago.
The eight-year-old, a pupil at Grindon Hall Christian School, is often confined to a wheelchair after the condition weakened the muscles around his lungs and pelvic area.
According to a report published by the Muscular Dystrophy Campaign (MDC) charity, healthcare authorities in the North East are squandering up to £1.3million a year on avoidable hospital treatment for people with muscle-wasting diseases.
The Invest to Save survey estimates almost 40 per cent of the £81million annual cost to the nation, of emergency hospital care for people with muscle-wasting disease, is unnecessary.
The MDC claims that, in the region, the total cost of £3.5million would be slashed by half each year by investing in preventative treatment, such as physiotherapy support and care advisers for patients with the disease.
Mrs Hodgson recently met campaigners as they gathered at Westminster to present the report to Health Minister Paul Burstow, and call for immediate action to address the waste.
“I was shocked to hear about the difficulties some patients and families are facing in accessing the specialist care they so clearly require,” she said.
“Like most other things, catching a disease early and tackling it quickly saves time and money later on.
“In this case it also saves a lot of pain for the patient and stress for them and their family, so I hope that the Minister will take this report very seriously, and I look forward to him taking action to end this unacceptable situation.”
The concerns are echoed by Mr Bailly, a member of the MDC, who said families face a constant struggle to receive the care they need.
“It is highly stressful coping with our situation, and we have to fight every inch to get Pascal what equipment he needs.
“It is unacceptable that families are in a constant battle to get the help they require, and there should be investment made into providing more care advisers for patients.
Mr Bailly said the national drive was gathering momentum.
“The campaign is going well and we’re getting more and more support from MPs all the time,” he said.
Backed by a group of leading clinicians, the MDC argues that investing as little as £65 per patient each year, in frontline health services and equipment, would significantly reduce critical care on hospital wards costing up to £1,925 per day.
The charity is now calling for a full national audit of emergency care for people with muscle-wasting conditions, to address the wasted funds.
Nic Bungay, Director of Care, Support and Campaigns with the MDC, said: “We are delighted to have the support of Sharon Hodgson MP in our campaign for investment in services to improve health care and save money.
“She is a powerful voice in Parliament for local patients and families living with muscle-wasting diseases.”