Clinical Negligence Solicitors

A student who needs a specific drug to enable him to live and lead a normal life is pleading with NHS bosses to prescribe it for him.

Jack Royall, 22, has a condition known as tuberous sclerosis, in which benign tumours develop in all major organs in the body. The condition is a genetic disease, which is currently incurable.

Mr Royall has been brought back to life during major brain surgery and has been resuscitated after suffering severe seizures, local publisher EDP24 reports.

He had been trialling a new drug Everolimus, which has been licensed but which is not currently prescribed under the NHS. Mr Royall says that Everolimus – which he has been taking for the last five years – has meant he has been able to live an independent life.

The drug trial has resulted in brain, kidney, liver and eye tumours shrinking by up to 90%, he says.

However, Mr Royall could now face another fight for survival as funding for the drug Everolimus could end in May when the drug trial ends and the NHS will not pay for the cost of the drug.

Mr Royall was diagnosed with tuberous sclerosis at the age of one, after experiencing fits on holiday in Florida. Since then, he has suffered from epilepsy and autism as a result of Tuberous Sclerosis Complex.

However, he said that since taking Everolimus in the Novartis trials between 2010 and January 2015, he has been made to feel alive.

“It’s completely changed my quality of life,” said Mr Royall.

“I wouldn’t be here if it wasn’t for that drug, so I feel disgusted that the NHS won’t fund this.”

Mr Royall’s mother Ali Royall said that the thought of her only son potentially dying from a condition for which a treatment exists is unbearable.

“This drug is keeping Jack alive,” she said.

“I have spent 22 years battling to keep him – and now I have a drug that is doing it for me.”

A spokesman for NHS England said that it was considering forming clinical policy on Everolimus – and added that any patient wishing to have the same treatment as Mr Royall should apply for specialist funding through the Individual Funding Request scheme.

However, the EDP says that in a letter it has seen, NHS England claims that Mr Royall is not eligible for specialist funding for Everolimus, stating there is no “evidence that Jack Royall had an exceptional clinical ability to benefit, when compared to other patients with a similar condition”.

A spokesman for NHS England said that no treatments were routinely made available on the NHS without prior approval of the National Institute for Health and Care Excellence (NICE) – and without first being made part of NHS England clinical commissioning policy.

“NHS England is considering the formation of clinical policy on Everolimus for a number of indications, as part of our work programme for the coming year; along with a large number of other competing priorities – including working with NICE to determine whether any of those indications will be included in their work programme,” said the NHS England spokesman.

“In the interim, the Individual Funding Request route remains open to clinicians for patients with exceptional need.”

Mrs Royall said:

“No mother wants to see their children suffer – and without the drug, Jack will really suffer.

“He will become very ill and eventually I will lose him, which is any parent’s worst nightmare.

“Without this drug he wouldn’t be here, it would have killed him. If they take the drug away it will just go back to how it was before.

“They feel Jack hasn’t benefited enough from it, but I don’t believe that.”

Mrs Royall said that if her son’s treatment with Everolimus stops in May and the NHS does not continue it, the whole family would be forced to move abroad, where the drug is used.

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