THE family of a three-year-old girl from York with a rare condition are urging the government to give her NHS access to a new drug.

Matilda Jamieson has Type 3 spinal muscular atrophy (SMA), the symptoms of which can include problems with breathing and swallowing, twitching and shaking muscles, bone and joint problems, and difficulty walking.

Her parents believe a new drug called Spinraza could help change her life.

The drug is already available in many European countries, and has been approved in Scotland but the independent expert body NICE has stated it does not intend to recommend the drug for use on the NHS in England because of questions about its effectiveness and cost.

Matilda's case has been taken up by York Outer MP Julian Sturdy who raised it with health secretary Matt Hancock in Parliament.

He said: "NICE has so far declined to recommend the drug Spinraza, despite its ability to transform the lives of patients, such as my young constituent Matilda Jamieson who suffers from Type 3 Spinal Muscular Atrophy.

"As NICE meets today to finalise the guidance, can my Right Honourable Friend assure me that he will work with the manufacturers, NHS England and NICE to ensure that patients like Matilda can benefit from it?"

In response Mr Hancock said his department worked closely with NICE and it was right that they were able to make objective independent decisions on treatment access.

After leaving the House of Commons, Mr Sturdy said: “While I appreciate the importance of NICE’s independent processes, the fact remains that the Jamieson family and many others are deeply concerned that this life-changing treatment remains unavailable. Matilda’s parents are very clear on the transformative impact Spinraza could have in her life, and I will continue to do everything I can to enable patients to access this drug."

He said he intends to carry on lobbying NICE and the government over the matter.