A leading charity has called for more action from the Executive to help people in Northern Ireland living with Parkinson’s as carers tell of how they are “fighting against the tide all the time”.
A report from Parkinson’s UK in Northern Ireland claims that the healthcare system in the north is “failing carers”.
The ‘Parkinson’s: Who Cares?’ report reveals that carers have told the charity of how they are being left “mentally and physically tired” and are struggling to look after their loved ones properly.
The report, which will be launched today at Stormont to mark the start of Carers Week, includes calls for the Executive to ensure the Regional Review of Neurology is “completed as soon as possible”.
The review is looking at the “optimum service configuration for neurology services through to 2035″.
But it is around five years since its original scheduled release date.
The charity is calling on the Executive to set out its plans for implementing the recommendations of the review and the financial commitments it will make.
Sarah McCully Russell from Parkinson’s UK in Northern Ireland said the report “allowed us to speak directly to carers and listen fully to their concerns and worries”.
“We knew that many were struggling but the depth of the difficulties they face every day is stark and makes for difficult reading,” she said.
“Despite their daily tasks and frustrations, it was their loved ones who were firmly in their minds.
“Time and time again, we heard that carers wanted people living with Parkinson’s to have access to an improved health care system.
“This would help the person they care for to live well with their condition, which would in turn reduce the stress and pressure faced by carers.
“As a charity supporting those living with Parkinson’s, we are calling on the Northern Ireland Executive to ensure the Regional Review of Neurology is completed as soon as possible.
“On completion, we would ask that they set out a commissioned delivery plan to support the implementation of its recommendations, alongside the financial commitment required to do so.”
The report also found that the support of carers is critical in helping people to live well with Parkinson’s.
One carer talked about how they were struggling to meet the needs of their loved one.
“There’s a lot of work,” he said.
“I do everything, and I don’t mind doing everything, but I can’t be that person that they probably want me to be at the minute.”
Another carer expressed frustrations with the current system: “You feel like you’re fighting against the tide all the time.
“Why is it such a fight? Why can’t things just go simply? Every aspect there’s a barrier. When does the barrier come away and it gets easier?”
Another said: “I feel like we’re fighting the system. I’m fighting for them and you’re mentally tired and physically tired”.
Ms McCully Russell added that the “health and social care system is reliant on the unpaid work of carers, and we found that supporting carers ultimately supports the healthcare system”.
