Alarming new evidence today lays bare the delays in diagnosis and lack of advice and help offered to those who suffer from the condition.
Some families have been advised to ‘search on Google’ for information on the illness, while three-quarters were given no emotional support after receiving the life-changing news, according to the charity Muscular Dystrophy UK.
Lesley Wegg was told her seven-year-old son Ashley was ‘likely’ to have the progressive Duchenne muscular dystrophy in May last year.
It was one month later, when the family had just returned home to Driffield, East Riding following holiday, that a paediatrician called them to confirm the devastating news.
“My husband took the call and he never spoke, just hung up. It was a few hours before he told me,” said Mrs Wegg.
Research suggests that the Wegg family are not alone. Of the 700 people surveyed by Muscular Dystrophy UK, who had an average-three year wait for a diagnosis, seven per cent said they were given the news over the phone, while nine per cent received a letter.
This, and a general lack of support from the NHS, has been blamed for causing depression among sufferers and their relatives.