Newry boy Alfie had been told he can’t move care to Newcastle, where breakthrough new medicine is available
A Newry boy who’s been denied access to a breakthrough new medicine has been offered some hope, after health authorities agreed to “review” a request to transfer his care elsewhere.
Alfie Pentony has a rare form of muscular dystrophy known as Duchenne and he is one of a small number of boys in Northern Ireland whose condition can be treated with a new drug, Givinostat, that hasn’t yet been made widely available on the NHS.
The Belfast Trust has now agreed to “review” a request by his family to transfer his care elsewhere in the UK where givinostat is being made available, after they were turned down initially.
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Belfast Live reported last week how his family had asked for Alfie’s care to be transferred to Newcastle, where Givinostat is being made available to boys with Duchenne through an early access programme and where there is a long history of expertise in muscle disease.
But the family’s request was turned down in a move branded “cruel” by the 12-year-old from Newry.
The Belfast Trust also had the option of helping boys like Alfie by taking part in the early access programme but decided against it, after deeming it too expensive to allocate staff for things like regular blood tests – despite the medicine being made available free of charge by the company behind the new drug.
In a statement to Belfast Live, a spokesperson for the Trust offered an apology to Alfie and his family. The Trust has also said it will now “review” the family’s application to transfer Alfie’s care to Newcastle, and will “resubmit” additional clinical information to help make the case to a Department of Health board that will have the final say.
His mum Colleen, meanwhile, has threatened legal action if her boy can’t move to Newcastle for treatment.
Speaking to Belfast Live alongside his mum this week, Alfie said the decision to prevent him moving his care to Newcastle is a “shambles”. The Newry boy added: “It is disgusting.”
Mum Colleen said: “I’m not going to let this lie. He is my son.”
And in a letter seen by the Belfast Trust threatening legal action, she told health bosses she would seek judicial review proceedings in a case “involving urgent medical need an patient rights under NHS policy and equal access to care”.
In a statement, a spokesperson for the Trust said: “Belfast Trust fully understands how difficult this issue is for Alfie and his family. We sincerely apologise to Alfie and his family for being unable to provide Givinostat at this time.
“We continue to care for him and provide his family with all support and advice possible. This has included submitting an Extra Contractual Referral (ECR) at the family’s request in support of Alfie being treated elsewhere in the UK. Unfortunately the service was informed on the 23 July 2025 that the ECR was not approved for this transfer of care. The Clinician has agreed to review the ECR and will resubmit with additional clinical information for further consideration if appropriate.”
The spokesperson continued: “While Givinostat can be made available for an Early Access Programme (EAP) following NICE recommendations, Belfast Trust is not in a position to proceed under the EAP as its implementation needs to be managed within defined and agreed protocols, and additional staffing resources will also be required to ensure the treatment can be provided safely.
“Should NICE recommend treatment with Givinostat, Belfast Trust will liaise with commissioning colleagues in the Department of Health’s Strategic Performance and Planning Group (SPPG) to establish what is needed to allow the Trust to be in a position to support its delivery.”
The Trust statement added: “The Royal Belfast Hospital for Sick Children provides comprehensive care for patients with DMD and is part of the NorthStar clinical network which consists of consultants, physiotherapists and other allied health professionals at 23 specialist paediatric tertiary centres across the UK. At the children’s hospital the neurologist, along with geneticists, makes a diagnosis and commences appropriate treatment and regularly reviews the patient. They can also take the opportunity to refer patients to trials in other UK centres if appropriate.
“A multi-disciplinary team approach is adopted for patients with DMD, and this includes neurology, cardiology and respiratory specialists as well as endocrine specialists. Physiotherapists are also involved with the patient’s care. Any proposal being considered for service development will reflect staffing and infrastructure costs for one full year.”
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