Scarborough mum's happiness at doctors' U-turn decision to fund son's life-changing drug

Jo Parrott and her 11-year-old son Rhys Mallinson.
Jo Parrott and her 11-year-old son Rhys Mallinson.

A boy who suffers from a rare genetic disorder will be able to continue taking his life-changing medication following an unexpected change of heart by health chiefs.

Rhys Mallinson, of Newby, Scarborough, was born with Tuberous Sclerosis Complex (TSC), a condition that leads to the growth of benign tumours in various organs.

As a result of the condition, the 11-year-old suffers from autism, ADHD and severe epilepsy which, in his case, can only be treated through a drug called Everolimus.

This had been made available by NHS England on a trial basis. However, in July last year the authority announced its decision not to fund it despite evidence showing its effectiveness.

The decision had left Rhys’ mum Jo Parrott “devastated” as she dreaded the thought of what her son’s life was going to be like should he come off the drug.

However, after months of campaigning to overturn the ban by the Tuberous Sclerosis Association (TSA) and Rhys’ mum herself, England’s health service made a U-turn announcing that the drug will now be made available from April.

Jo said: “I don’t know why they changed their mind but it’s a massive relief to us as a family that we won’t have to fight to access this drug. I am so happy that NHS England made the right decision, the evidence has always been there.

“This will give the chance to many children with the same condition to try a treatment that has proven that it can work.”

Rhys had battled refractory seizures for over 10 years and prior to taking Everolimus he used to be taken to hospital as often as two or three times a week. When he started taking the drug, his mum said, his quality of life improved dramatically with his seizures becoming less severe.

Everolimus, which had already been funded by the Scottish Medicines Consortium, will be available to those whose TSC-related epilepsy has not responded to standard anti-epilepsy medicines.

TSA Chief Executive Louise Fish said: “Around 70 people in England are currently prescribed everolimus for TSC-related kidney and brain tumours. NHS England estimates that a further 300 people in England will benefit from treatment with everolimus for TSC-related refractory epilepsy.

“We’re delighted that NHS England has decided to fund this life-changing and potentially life-saving treatment from April 2019 onwards. We’ll be working with TSC clinics across England to help them get ready to prescribe this drug to more people who can benefit from it.”