THE parents of a little boy who has Cystic Fibrosis say a new drug which is only available in Scotland has led to noticeable improvements in his health.

Doreen MacEachen said she was “extremely grateful” that her son Hugo has access to Kalydeco - the first drug of its kind which targets a mutation affecting just 4% of patients. It has been found to slow the progression of the disease.

The drug has been available on the NHS in Scotland since 2014 for people over the age of six and was licensed for 2-5 years old in 2016.

However children in England, Northern Ireland and Wales are yet to receive the treatment.

NHS England did recommend that Kalydeco should be made available to children age 2-5 in England but the final decision has been put on hold.

The Cystic Fibrosis trust has said it is “inconceivable” that a drug which has been shown to slow the progression of Cystic Fibrosis would be denied to any young people in the UK.

Tests have also shown improvements in lung function and a reduction in time spent in bed on intravenous antibiotics from five weeks to less than five days a year.

Doreen MacEachen’s three year-old son Hugo, from Bearsden, has been taking the treatment for more than six weeks.

She said: “We are extremely grateful for this drug.

“Since he’s been on it we’ve noticed improvements in his health - he seems to have more energy, he recently had a cold which he recovered from easily, his stools look more normal and I’m sure he has put on weight – it’s fantastic.

“We haven’t been to a clinic appointment since Hugo started Kalydeco, but it will be interesting to see his growth and weight.

“It’s amazing to hear that other children like Hugo have access to this drug in Scotland, especially given the potential long term benefits gained from this early intervention.”

James Barrow, Head of External Affairs at Cystic Fibrosis Trust said: “We are pleased that this life-changing drug is now available to children in Scotland but disappointed it is not available in other parts of the UK.

“It is inconceivable that a drug that has been shown to slow the progression of cystic fibrosis would be denied for younger people who stand to benefit so much at such a crucial time in their development. With each day that passes the likelihood of irreversible lung damage and reduced life expectancy increases. The situation in England is particularly cruel as NHS England said the treatment should be available but then put the decision on hold. We urge England, Wales and Northern Ireland to follow Scotland’s lead.”