Access to vital services for people who have neurological conditions has worsened since the recession.
Waiting times to see a neurologist have increased: in 2019, 37% of patients were waiting more than a year; 33% were in 2011.
Munster had the highest number waiting more than a year, at 41%, according to a survey published by the Neurological Alliance of Ireland.
NAI executive director, Magdalen Rogers, said that the number of people unable to access vital services doubled between 2011 and 2019. Those services included neurology, nurse specialists, physiotherapy, and counselling.
People with a neurological condition are also incurring additional costs, with 45% paying more than €100 a month towards their care.
Physiotherapy was a significant part of the additional expenditure.
The NAI blames the lack of progress in implementing the national strategy for neuro-rehabilitation services, which was published in 2011. The plan outlines a three-year framework for the development of hospital and community-based neuro rehabilitation services.
Alexis Donnelly, a lecturer in computer science, who has multiple sclerosis, was a patient representative on the working group that developed the strategy.
Mr Donnelly said he felt “completely let down” at the lack of progress in implementing the strategy.
“What makes me most angry is the lost opportunities for so many people, due to the failure to put services in place,” he said.
Mr Donnelly, who was speaking in advance of Brain Awareness Week, from March 16 to 22, said a further challenge was the threat to existing services.
HSE-funded disability organisations are the primary providers of specialist services to people with neurological conditions who are living in the community.
However, those organisations’ incomes were reduced when public-services pay was cut between 2010 and 2013.
Ms Rogers said the so-called Section 39 organisations stepped in because the State did not develop the neurorehabilitation services that are taken for granted in other countries.
“Now, we have a serious crisis for people with neurological conditions in this country, as even the limited services they have are under threat,” she said.
Ms Rogers said the next government must invest in neurology and neuro- rehabilitation services, including those provided by Section 39 organisations.
“We are calling on any new government to honour commitments made over decades to invest in services for the 800,000 Irish people living with neurological conditions.”
The alliance is the national advocacy umbrella for 30 patient organisations that work with Irish people who have neurological conditions.
There are 800,000 such people, who have neurological conditions including stroke, epilepsy, dementia, acquired brain injury, multiple sclerosis, and Parkinson’s disease, as well as rare and genetic conditions.