Eamon McPartlin knew there was something wrong with him more than a decade ago.
His neck kept pulling to one side, his mood had changed, he was having trouble walking and was finding certain movements increasingly difficult.
He thought at the time it related to an old back or knee injury, but eventually it reached a point where he could no longer work as an engineer. After years spent seeking answers and undergoing tests, he was diagnosed with two neurological disorders: dystonia and functional neurological disorder (FND).
Dystonia is a movement disorder, while FND is a condition that affects how the brain receives and sends information to the rest of the body.
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“Looking back, I had symptoms of FND in my early 30s but it wasn’t until my early 40s when the symptoms were getting worse did I take it seriously,” the now 52-year-old said.
“I didn’t get support as early as I should have. It was when the bladder got involved that I went to the GP in 2013.”
It was June 2021 before the Co Leitrim man was diagnosed with FND after seeing a specialist in London. That long period spent searching for answers, trying to understand what was wrong with him, was “very difficult”, he said.
“I changed as a person. I became very quiet. I was just always in a bad mood. The small things annoyed me the whole time ... When I couldn’t get answers I just got more frustrated.”
Mr McPartlin was speaking at the start of National Brain Awareness Week, March 10th-16th. He highlighted the difficulties people with neurological disorders face in Ireland.
“Unfortunately, in relation to treatment for FND, I had to go back on the Treatment Abroad Scheme to try to get treatment in London. So I’m still waiting from autumn 2021 to start my virtual treatment programme in the Wolfson rehabilitation centre in London,” he said.
“I got my assessment last June, almost three years from when I was diagnosed. But in 2023 I went over and did a one-week private programme because I was fortunate to get some funding. That was £4,000, plus accommodation, for one week.”
Mr McPartlin said the recommended treatment plan is a six-week programme, which costs a “ridiculous” £42,000 plus accommodation.
“Accessing multidisciplinary treatment including physiotherapy, psychology and occupational therapy through community neurorehabilitation teams, without having to travel huge distances is vital,” he says.
“It allows people living with a neurological condition to receive treatment locally without them or their family having to take significant time off work or spend lots of money on travelling and accommodation. For some, depending on where they live in the country, the community neurorehabilitation team may be their only option to access the services they urgently need to support them in living a better quality of life.”
The Neurological Alliance of Ireland (NAI), the umbrella group for neurological organisations, has criticised the services available to people with these conditions.
According to the alliance, there are just two partially staffed community neurorehabilitation teams in place, despite nine being promised in 2019.
Magdalen Rogers, chief executive of NAI, said neurorehabilitation is a “vital service to enable people with neurological conditions to live their day-to-day lives”.
Ms Rogers called on the Government to fund four community teams in this year’s budget.
“We want to see this commitment during their first 100 days in office, to send a clear signal they intend to deliver on the pledges within the Programme for Government to complete the national rollout of community neurorehabilitation teams,” she said.
More than 50,000 people are estimated to be diagnosed with a neurological condition in Ireland each year, with the number set to rise as the country’s population ages.
Asked about provision of neurorehabilitation services, a Health Service Executive spokeswoman said there is an overarching aim to develop neurorehabilitation services that are safe, high quality and person-centred “to improve outcomes for people”.
The services must be integrated with other care and be provided “as close to home as possible”, she said.
The services are to be configured into “managed clinical rehabilitation networks” that contain community teams and regional specialist services, and have access to the National Rehabilitation Hospital.
The spokeswoman said there are no community neurorehabilitation teams funded for the HSE Dublin and North East region, and no such teams servicing the regional areas of Carlow, Kilkenny and Tipperary South, Waterford and Wexford, or Louth, Meath and Midlands.
