‘Critical gap’ in care for those with neurological conditions

According to the Neurological Alliance of Ireland, Cork University Hospital needs 20 nurse specialists to sufficiently help the thousands of patients living with neurological conditions in the county.
‘Critical gap’ in care for those with neurological conditions

Patient Representative, Tony Wilkinson, from Cork Parkinson’s Association and his wife Kate Wilkinson with Family Support Work, Patricia Leahy, from Spina Bifida Hydrocephalus Ireland at the launch of a new campaign seeking investment to tackle the serious shortage of nurse specialists in neurology in Cork. PIC Darragh Kane

A NEW campaign is calling for the “serious shortage” of specialist neurology nurses in Cork to be addressed.

According to the Neurological Alliance of Ireland, Cork University Hospital needs 20 nurse specialists to sufficiently help the thousands of patients living with neurological conditions in the county.

Currently, the hospital has just four.

The Patients Deserve Better campaign, which launched last week, is trying to urge officials to tackle the “critical gap” in neurology staffing nationwide.

It is something Tony Wilkinson, chairman of Cork Parkinson’s, has spent years campaigning for.

Mr Wilkinson first moved to Cork six years ago after being diagnosed with Parkinson’s disease, a neurological condition that can cause shaking, stiffness, and difficulty with balance and coordination.

He’ is originally from the UK, where he experienced firsthand the difference that having a specialist nurse can make.

“When you are diagnosed with Parkinson’s in the UK, within two weeks a specialist nurse comes to your house and assesses you,” he said. “That nurse then becomes your point of contact. Anytime you’re not good, you call them, and they are qualified to change your medication and they can assess you at home, and so on.

“It is a fantastic service that is available all over Europe, but it doesn’t happen here in Ireland. I have no point of contact here. Cork has no Parkinson’s specialist nurse whatsoever.”

According to studies done by Cork Parkinson’s, hiring just one nurse who specialises in the condition would save the HSE €300,000 a year.

“In the UK, each specialised nurse has less than 300 patients, which is a manageable group. They keep those people out of hospital and take some of the weight off the shoulders of consultants, who are rushed off their feet,” said Mr Wilkinson.

“In the whole of the Republic of Ireland, there are just six specialist Parkinson’s nurses, compared with 22 in Northern Ireland.

“Here in Cork, we have roughly 1,250 people with Parkinson’s, and no nurse. In order to align with the UK’s system, we would need just six, and those six would save the HSE a total of €1.8m a year.”

According to Mr Wilkinson, the reason that the specialists are not available is down to funding and a lack of structure to support such an endeavour.

“I had someone ring me in Cork a few years ago after her husband was taken to hospital following a fall,” he said. “She had spent months trying to get someone to come assess the house and have rails fitted.

“Her husband fell down, broke his hip, and spent 15 weeks in hospital. It costs nearly €1,000 a day to have a patient in CUH. If someone had come around before he had fallen, they would have saved all of that. That’s what we don’t understand.

“If it wasn’t for the campaigning of local groups, people would be sitting lonely and very upset.”

The other nurses that the group is campaigning for would specialise in various neurological areas, such as the spinal cord and brain condition multiple sclerosis (MS), which Carrigaline native Declan Groeger has been living with for 33 years.

“It’s absolutely appalling,” he said.

“There’s one neurology nurse in CUH for epilepsy, one for stroke, and then there are two nurses for every other neurological patient. The two nurses I deal with are excellent, but they’re not MS specialists.”

Mr Groeger runs a blog where he writes about his experiences with MS, which he says can sometimes be a “lonely” condition to live with.

“You don’t get out to socialise,” he said. “I’m not driving at the minute. A lot of people with neurological conditions can’t see. I think all neurology illnesses are lonesome. We need more nurses.”

He added that the campaigners are looking for specialists that they can contact during normal business hours.

“I’m not looking for someone 24/7,” he said. “What the nurse would mean to me is that I could contact them when I have a particular issue.

I can contact the nurses in CUH now, but I know that they’re overworked, and they can’t do everything that they want to be doing.

“However, even having them there is huge. In some places, there’s just one neurology nurse. What if they go away or get sick?”

When speaking about the figures collected by the NAI and Cork Parkinson’s, Mr Groeger said that he “cannot get over” the fact that the issue has not been resolved. Unfortunately, he doesn’t expect it will be any time soon.

“We have never even had enough neurologists in the country,” he said.

“The chances of getting neurology nurses seem unimaginable. But we have to speak up because it feels like we don’t matter enough. It just feels so wrong to be left so alone.”

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