An Eastbourne mother has voiced her concerns at the lack of specialist care, which she believes is putting her son’s life, and the other 5,000 people with muscular dystrophy in the South East, at risk.
Phillippa Farrant’s son, Dan, has Duchenne muscular dystrophy, and is backing a report by the charity, Muscular Dystrophy UK, published this week.
The report, called Missing out, warns that the lack of investment in a single care advisor in the region is putting the lives of thousands of children and adults at risk
The charity said the South East is the only part of the country without a single care advisor, despite 61 being in post across the country.
Phillippa said: “Dan’s condition can change drastically with potentially life-threatening heart and chest complications so it is really frightening to not feel supported.
“We have never had access to a care advisor. This big black hole in the region’s healthcare has been really damaging to Dan’s health, and stressful to our family.
“Without this support, we’ve always struggled to get expert health in a timely manner, and time is so precious for Dan’s condition.
“NHS bosses should act now to appoint this crucial role, families like ours are lost without it.”
Care advisors provide medical advice, along with practical and emotional support, helping those with muscular dystrophy to manage their conditions throughout their lives.
They can bridge gaps of six months or more between appointments with hospital specialists, making home visits and offering advice over the telephone.
Muscular Dystrophy UK said there are four expert care advisors for 6,000 people in the South West, three for 6,000 in Yorkshire and the Humber and three for 5,000 people in the East Midlands.
The charity is calling for South East health bosses to urgently fund a specialist care advisor role.
Muscular dystrophy leads to increasingly severe disability and can affect the heart and vital breathing muscles, cutting lives short.
The charity said trusts in the South East spend £5.7 million a year on unplanned hospital admissions
Nic Bungay, director of campaigns, care and information for Muscular Dystrophy UK, said: “Failure by South East trusts to invest a small amount in a care advisor for people with muscle-wasting conditions, is costing the NHS millions of pounds down the line.
“Hospitals waste vast sums on avoidable emergency care, while patients are left struggling alone until they are rushed into hospital, and suffer physical and psychological effects as a result.
“The South East has a considerable population of people with muscle-wasting conditions, but is starved of anywhere near the adequate level of support. Support is so scant it does not even meet the NHS’s own guidelines.
“It is unacceptable that families in the South East are forced to travel to London to receive specialist care.
“Funding for this key role is vitally needed to bring standards up to those seen across the rest of the UK and to support the thousands currently missing out. We hope to work with the Trusts to rectify this situation.”
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