Hospital trust misled family of disabled boy - MP

An MP has urged a hospital trust to apologise for "misleading" the family of a boy with a degenerative illness.

The Liberal Democrat MP for Henley and Thame, Freddie van Mierlo, said Oxford University Hospitals NHS Foundation Trust (OUH) assured him it was ready to roll out a new medication for people with Duchenne muscular dystrophy (DND).

He told the family of 11-year-old Ben, from Henley, who has the condition, but the family was subsequently told by the trust it could not commit to a timescale.

OUH said it was exploring how to deliver the drug, but funding challenges meant the process was "not straightforward".

Mr van Mierlo said the trust told him it was ready to launch an Early Access Programme to allow patients to access givinostat during a meeting in February.

The drug, which has shown positive results in trials, was given conditional approval in the UK in December.

The MP said: "I took the trust at its word and shared the information with my constituent.

"To later find out the trust was not ready and could not provide Ben with the treatment he needs was devastating for the family."

Ben was diagnosed with DND in 2017. The condition progressively weakens muscles and can limit life expectancy.

Alex Clarke, Ben's dad, said: "This drug could slow down the progression of Ben's condition, but we need action now.

"Every day that passes without access to givinostat feels like we are running out of time.

"I urge OUH to follow through on their earlier assurances and get Ben the treatment he urgently needs."

Professor Andrew Brent, chief medical officer at OUH, said: "Unfortunately, although the drug is being offered for free by the company, there are many other costs to delivery of the treatment as the medication needs close monitoring which will require additional staffing resource and expertise.

"We are currently investigating how we might do this, but it is not straightforward without NHS commissioning funding to support the service and at a time when we, like all of the NHS, are being asked reduce our costs.

"We want to do all we can support patients with Duchenne and their families, and are therefore exploring whether there is any way we can deliver givinostat without stopping other essential care."

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