Courier Opinion: Fife boy has no time to lose to NHS officialdom

The NHS remains one of the UK’s greatest assets.

But cases like that of six-year-old Fife boy Jamie Tierney show it often struggles to think outside the box.

After Jamie’s shock diagnosis of Duchenne Muscular Dystrophy (DMD), his parents, mum Bobbie and dad Jamie senior, were simply told to go home and enjoy their son.

Even with no cure on the horizon, they instead decided to look into new treatments.

It has taken them to Dubai, Mexico, Colombia and Ireland.

Now, after a three-year battle for access to the latest life-prolonging treatments, the frustration felt by Jamie’s parents over his treatment is understandable.

Dunfermline family with Jamie Tierney — The Tierney family have had to fight to get access to new treatments for Jamie. Image: Supplied

So too is their fury at NHS Lothian for refusing to provide a potentially game-changing new medicine – givinostat – due to a lack of infrastructure.

Especially so when the supplier of the drug is making it available for free.

The Tierney family are now considering uprooting their lives and moving to the USA in the hope of speeding up Jamie’s access to cutting-edge care.

It’s a decision that will remove them from the support networks of their local community.

Days and weeks matter

But as Mr Tierney explained: “Over the last three years, watching the development here compared to other countries, we’ve found it incredibly frustrating.”

When it comes to diseases like Duchenne Muscular Dystrophy, days and weeks really do matter. It shouldn’t take months of committee meetings to make the latest treatments available.

This isn’t about safety testing – givinostat is already widely available in other countries.

Instead the long process of approval is down to “cost-effectiveness” assessments. Despite being licensed for use in December, it could be August or later before the drug is finally approved.

‘Children like Jamie have no time to lose’

While early access programmes are available, and seem to be much easier to navigate south of the border, Scotland’s health service appears to have fallen behind.

Some families affected have now hired campaigning lawyer Aamer Anwar, who described the refusal to provide givinostat as “cruel”.

When the coronavirus pandemic hit our finest scientists got to work. Moving at an historic pace they discovered potential treatments and eventually a vaccine. Government too was singularly focused and willing to move fast.