It's a life-changing, safe and free drug. But our children are being blocked from getting it

Givinostat slows the progress of incurable condition but Scots kids are missing out in resource fight

- JOHN FERGUSON

CHILDREN with a rare muscle-wasting disease are being denied access to a groundbreaking new life-extending treatment, the Sunday Mail can reveal.

Givinostat slows the progress of Duchenne muscular dystrophy (DMD) and is being provided free to the NHS by manufacturers after being cleared for use in the UK last year.

However, Scottish health boards have failed to provide any patients with the drug via the early access programme - which is up and running in England.

Furious parents of a sevenyear-old boy have been told by the chief executive of NHS Greater Glasgow and Clyde that despite Givinostat being free, administering it will create an "increase in workload".

Michael Harvey's mum Mhairi said: "The picture surrounding access is nothing short of a morally reprehensible and unprofessional disgrace. This lifechanging, safe and free medication is being withheld from patients while a tug of war over staffing ensues between management and professionals.

"The additional work for staff attributed to Givinostat is so minimal it's almost unquantifiable, but as the neuromuscular services at the Royal Hospital for Children in Glasgow have been so grossly under resourced these last few years, staff feel they are not in a position to administer it.