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25 May 2022

Terrifying' two-year wait for neurological assessments

Older amyloidosis patients cannot afford to lose two years of treatment

Terrifying' two-year wait for neurological assessments

Terrifying' two-year wait for neurological assessments

Public patients in Inishowen with diabetes or amyloidosis will have to wait “years” for their crucial neurological assessment appointments, Inish Times can reveal.

This dire situation is little better for private patients.

Speaking to Inish Times, James Green, originally from Burt and living with an amyloidosis diagnosis, said he had recently been told it could be late 2023 or early 2024 before he could be offered a neurological assessment appointment, due to the extensive waiting list.

James was referred to Dr Sinéad Murphy, Consultant Neurologist at Tallaght University Hospital for a neurological assessment.

He explained: “I was referred by Professor Emer Joyce, Consultant Cardiologist at Mater University Hospital (MUH). Professor Joyce has set up an amyloidosis unit MUH and is trying to get any amyloidosis patients under her ambit.

“The purpose of the neurological assessment would be to test whether or not I was experiencing any neurological impairment as a result of my amyloidosis, for example, has it affected my body, my responses?

“When I contacted the hospital, I was told it would be late 2023 or early 2024 before I could be offered a private appointment and a public appointment would be “years”.

“That is the terrifying part. Let's say someone has started to feel pins and needles in their fingers and their feet and there is a history of amyloidosis in their family, so they decide to go

and have a neurological assessment. They are going to have to wait two years or longer for an appointment, and no-one with a prospective amyloidosis diagnosis can afford to lose two years when it comes to treatment,” said James.

James said the backlog in neurological assessments was “extremely worrying”.

“All the more so,” he added,” because by the time a lot of patients get to the stage of manifesting amyloidosis, they are no longer working. They have had to cancel their private healthcare cover and are reliant on the public system.

“What we don't know at the minute is whether there is quicker access to neurological assessment appointments for amyloidosis patients who may be waiting to begin the Patisiran treatment. There has to be some way of them being fast-tracked.

“All we can say is, our organisation, ATTR Amyloidosis All Ireland, is seeking further clarification from Health Minister, Stephen Donnelly about where amyloidosis patients stand in relation to the waiting lists.

“From that point of view, our conference 'Emerging from the Shadows' which is taking place on Saturday, May 28, in An Chúirt Hotel in Gweedore, is extremely timely as we have pressing issues we need to raise with the Minister,” said James.

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