Neuromuscular: 'Ticking time bomb' for service after staff change

Michaela Hollywood said patients were being kept in the dark

People living with neuromuscular conditions in Northern Ireland are sitting on a "ticking time bomb" due to staff changes at the Belfast Trust, charities have warned.

It follows news that a lead consultant is to leave their role next month.

Three charities have written to the Trust to complain there has been "no communication" about plans for care beyond this point.

The Department of Health said it was involved in discussions on the matter.

Muscular Dystrophy UK, Spinal Muscular Atrophy UK and Pathfinders Neuromuscular Alliance highlighted the Belfast Trust is Northern Ireland's sole provider of risdiplam, a treatment currently available to some adults living with Spinal Muscular Atrophy (SMA).

They also raised concerns that the absence of the consultant would mean prescriptions could no longer be filled.

Such disruption could have "catastrophic" implications for people living with SMA, they added.

When approached, the Belfast Trust referred BBC News NI to the Department of Health for comment.

The department said it was "engaging with Trusts on options for the continuation of the adult neuromuscular care service".

'Kept in the dark'

Michaela Hollywood, deputy chief executive of Pathfinders, was diagnosed with SMA when she was eight months old.

She was first prescribed the drug in March 2021 and said she has enough medication to last for about two months.

"Too many people fought too hard to get this drug to be giving it up too easily," she said.

"Without access to treatment, and not because there's a lack of drugs, this could see a rise in hospital admittance, so we're hoping to get answers. At the moment patients are being kept in the dark."

Rob Burley, a director at Muscular Dystrophy UK, said families were "understandably extremely worried about the current situation".

"We'll do all we can do help resolve this and can't express enough the urgency to get some answers and clear information," he continued.