LIFE hasn’t been easy for little Matilda Jamieson. The three-year-old has a rare condition known as Type 3 spinal muscular atrophy (SMA3). It is a condition which can cause breathing and swallowing difficulties, twitching and shaking muscles, bone and joint problems, and difficulty walking.

Any parent seeing their child suffer symptoms like that would want to do everything they could to help her. Matilda’s parents are no different.

They believe a new drug called Spinraza, which is already available in many European countries, and which has been approved for use with patients in Scotland, could help her. Unfortunately, the body which recommends drugs for approval in England - NICE, the National Institute for Health and Care Excellence - doesn’t agree. It says it will not recommend the drug for use on the NHS here because it has questions about its cost and effectiveness.

The case has now been taken up by York Outer MP Julian Sturdy, in whose constituency Matilda and her family live. He raised it with health secretary Matt Hancock in Parliament - only for Mr Hancock to reply that it was right to leave NICE to make an objective, independent decision.

Mr Hancock is right as far as it goes. In a cash-strapped health service which is forever being asked to pay for expensive new drugs which may or may not be effective, there does need to be an independent organisation which can stand back and calmly assess whether a new drug is both affordable and effective. The problem here is that this drug is widely used in Europe, and has been approved for use on the NHS in Scotland. If in Scotland, why not in England?

We think the very least that NICE could do is recommend that doctors be given discretion to prescribe the drug on the NHS in cases where they think it really could help. All patients are different, and that way, those who know a patient best would be the ones making the final call.