Health Secretary slammed for failing to respond to muscular dystrophy families (2025)

SUNDAY MAIL EXCLUSIVE: Health Secretary Neil Gray has been criticised for posting about football and traffic lights on social media while failing to respond to a lawyer for families desperately trying to access a new life extending drug.

Health Secretary Neil Gray is facing a furious backlash after failing to respond to an urgent plea to help children with muscular dystrophy access a new life extending drug. The Sunday Mail told last week how boys with a rare form of the muscle wasting disease can’t get Givinostat through the NHS in Scotland despite the manufacturers giving it away for free.

There are thought to be less than 30 children suitable for the treatment which slows the progress of Duchenne muscular dystrophy (DMD). The condition tragically has a life expectancy is just 26 years.

And desperate families were left devastated when Gray failed to respond to an urgent letter from their lawyer - while finding the time to post on social media about traffic lights, youth football and even a picture of himself in sunglasses enjoying the hot weather.

Michael Harvey, who wants access to Givinostat for his seven-year-old son Michael, said: “If only these boys with life limiting conditions were an under 13s football team and they would get two responses in three days.”

Another response to Gray’s posts read: “Thank you for taking the time to share and update us all on the traffic lights. I am wondering if you could now update us on the administration of the FREE Givinostat to the boys with Duchenne who are losing muscle every day.”

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

NHS Greater Glasgow and Clyde have suggested “workload” issues could make it difficult for them to administer the treatment despite it being free of charge.

Michael Harvey’s mum Mhairi said: “It is a morally reprehensible and unprofessional disgrace. This life changing, safe and free medication is being withheld from patients while a tug of war over staffing ensues.”

Lawyer Aamer Anwar has now written to First Minister John Swinney demanding action.

The letter states: “Families I represent find it unbelievable that Mr Gray has failed to respond to my urgent letter of March 21 on behalf of the families.

“It surely cannot have escaped Mr Gray’s notice as Health Secretary that the headline of a national newspaper directed at him, was ‘Save Our Kids’, to add to the correspondence he received from us.

“It did not escape the families’ notice that Mr. Gray appeared to be ignoring us for some three weeks, whilst he was busy posting on social media about the lack of traffic lights in Airdrie, supporting a local under 13s over the course of three days, or campaigning in the sunshine with photos of his sunglasses on.

“A number of parents regarded Mr. Gray’s recent posts as a form of gas-lighting – his failure to acknowledge their plight can only be described as cruel.

“As a result of the lack of response by the Health Secretary, the families I represent have asked me to write to you ask you as First Minister to take immediate action to help to ‘save their kids’.

“The families also seek a meeting with yourself and Neil Gray and whilst I appreciate that the stock response may well be that this is not a ministerial decision, the fact remains the Health Secretary could prioritise this issue.

“The families in Scotland note that two out of four home nations - England and Wales - are prescribing the drug, so why then is Scotland so far behind in acting.

“I would have assumed that a Scottish Government which believes in independence, at the very least would be trying to deliver an NHS on a par with that of England.

“But putting politics aside, these families and children are desperate, they are not going away, and the intensity of the campaign will increase over coming days as their boys have only weeks not months at a chance of some quality of life.”

Around 200 children in Scotland are living with DMD, a rare and incurable condition affecting boys which causes progressive muscle weakness, leading to the loss of mobility, heart and lung complications.

For patients like Michael the disease is a daily battle with heartbreaking milestones to a future where the ability to walk, move, or even breathe, is gradually taken away. It means beginning Givinostat treatment is a race against time for a tiny number of boys who meet the criteria for the drug.

A Scottish Government spokesperson said: “We know this will be an anxious time for the young people living with Duchenne Muscular Dystrophy and their families, and we are firmly committed to supporting them to benefit from new medicines which help them live longer, fuller lives.

“In response to the concerns raised by Mr Anwar, the Health Secretary has asked the Chief Pharmaceutical Officer to explore if there are barriers preventing clinicians from prescribing Duvyzat^® and how these may be overcome to support safe, fair, and equitable access across Scotland.”