'There's nobody to call': Parkinson's patients seek more supports

Just six support nurses in Ireland for more than 12,000 patients with debilitating illness

Ivan and Eleanor O'Sullivan with their children Effy and Ellis. Picture: Larry Cummins

When Ivan O’Regan was diagnosed with Young Onset Parkinson’s Disease (PD) 10 years ago at the age of 31, his world was flipped upside down. Due to the under-resourcing of PD care in Ireland, he says he was left to process this without proper support.

Mr O’Regan took to the internet to research what he was in for over the years ahead. Seeing images of mainly older people with PD made it “psychologically very difficult” for him.

Over the last decade, Mr O’Regan’s diagnosis became progressively worse, and the worst symptom was not the physical toll it had on his body.

“One of the biggest parts of Parkinson’s is the mental side of it. I have suffered from depression because of Parkinson’s," he said. “Who do you call? There’s nobody there to call.” 

Mr O’Regan spent three weeks in hospital for his mental health. 

I was at breaking point and the hospital just wasn’t prepared for somebody with Parkinson’s.

There are just six PD support nurses in Ireland for more than 12,000 people with PD, well below international standards of one per 300 patients.

TDs and Senators will meet with a patient-led group of activists in at Leinster House on Wednesday to discuss supports for the sector. Thirty-one additional PD support nurses are needed across the country, a spokesperson for the group said.

“Annually, each of those nurses would save the HSE €300,000,” said Tony Wilkinson, chairman of the Cork Parkinson’s Association, who also suffers from PD. 

Seeing images of mainly older people with PD made it “psychologically very difficult” for Ivan O’Regan. Picture: Larry Cummins

“PD support nurses would stop me going into hospital, they save consultants time [and] they stop bed-blocking. It’s been two years since I saw a consultant, which is wrong. It should be at least once a year.” 

Just 21% of people with PD have had access to a PD support nurse since diagnosis, against international guidelines, according to research from Professor Suzanne Timmons at University College Cork. The research shows just half of the 14 specialist PD clinics have a PD support nurse attached to them and most patients are facing significant delays accessing the services due to lack of resources.

“These nurses are incredible”, he said. “Not only do they save the HSE money, it’s the quality of life the person has. It allows them to stay at home and allows them to be more human.” 

There are no PD support nurses in Cork and Cork University Hospital has been without a specialist consultant for the last six years, Mr Wilkinson said.

Ivan O’Regan: “If I had the support of a specialist nurse, I don’t think I would have needed to go to hospital for my mental health.” Picture: Larry Cummins

“It’s not fair on us, and it’s not fair on the other consultants who don’t specialise in Parkinson’s”, he said. “What pisses me off is that there are so many people sitting at home with no supports.” 

Mr Wilkinson warned that the country must invest in support services before it’s too late as the number of people living with PD in Ireland is set to double by 2040.

A petition asking the Government for additional supports for those with PD has reached over 5,000 signatures online. Richelle Flanagan, a person with PD who created the petition, said the State has been “negligent” with people with PD.

For Mr O’Regan, the increase in PD support nurses would be life changing.

“If I had the support of a specialist nurse, I don’t think I would have needed to go to hospital for my mental health,” he said. “You could talk to them immediately.”