Transcript generated automatically by AI and may contain errors.
Chapter 1: What is the scale of neurological conditions in Ireland?
One in six people in Ireland live with a neurological condition but access to diagnosis and care has become something of an air-cold lottery. Waiting lists have doubled in the past decade and with the budget fast approaching, advocates are warning that a system under immense strain is failing those who depend on it most.
Joining me to discuss this are Magdalene Rogers, CEO of the Neurological Alliance of Ireland, consultant neurologist Professor Orla Hardiman, and Carys Kenna, a patient trying to navigate the system. You're all very welcome. Thanks a million for joining us.
Magdalene, if I could start with you and just talk to me about the scale of this, because neurology waiting lists have doubled to 24,000 in 10 years. That's extraordinary.
Yes, David. So this is clearly a service that's under pressure.
Chapter 2: How have waiting lists for neurological care changed over the years?
You know, in a way, this is a good sign because it means that I suppose symptoms are being picked up and there's more awareness of neurology. But on the other hand, this means that waiting times for a first appointment and also between appointments for people diagnosed with neurological condition are getting longer.
What are we talking about when we talk about neurological conditions?
So there are nearly 400 types of neurological condition, anything from Parkinson's disease, epilepsy, multiple sclerosis, functional neurological disorder, the condition that Caris lives with, acquired brain injury, such a wide list. And if you think about it for a second, every one of us knows someone who's living with one of these conditions, one or more of these conditions.
OK, so it's a very wide spectrum. But as you say, it's been diagnosed earlier or better now, is it?
Well, one in six people, it's estimated that one in six people in Ireland has a neurological condition, over 860,000 people. So there is more awareness, but the challenge is getting the early diagnosis because early diagnosis, as you can imagine, is critical.
OK, Carys, you're one of the people that are relying on this care.
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Chapter 3: What types of neurological conditions are prevalent in Ireland?
Bring us back to 2020 because you started having seizures completely out of the blue in your early 20s. That must have been terrifying.
Yes, 100%. I think it was the end of the beginning of 2020, I started having really, really bad seizures. These were happening to me quite frequently, essentially falling onto the ground and shaking. And at the time, I was just, I had no idea what was happening. I was brought into hospital and at the time I was told I had epilepsy.
Now, I had done a scan called an EEG, which is typically what they do for epilepsy. However, 50% of epileptics come back with a clear EEG. So at the time, given I was having seizures, it was assumed I was having epilepsy.
Chapter 4: What challenges do patients face in accessing neurological care?
I was taking epileptic seizures and I was prescribed anti-epileptic medication. Unfortunately, taking this medication actually made my seizures significantly worse. And I was hospitalized over 20 times throughout 2020 from taking seizures. And it was just an absolutely terrifying experience. I had no idea what was happening. I knew the medication wasn't working.
And in 2021, I had a particularly bad seizure. Like, I think I had multiple seizures in a row. An ambulance was called and I was administered anti-epileptic drugs. However, when I came around, I was paralyzed in my right leg and I was unable to walk.
Oh, my God.
And it was at this point in the hospital that I was assessed by a neurologist who said that he didn't think I had epilepsy. And he thought I had another condition called functional neurological disorder, which we know as FND. I had never heard of this condition before. And essentially, I was given a piece of paper with a website on it, told to look up the symptoms on this website.
And then I was discharged.
When I say sorry, what?
Yeah, I was unable to walk at the time. I asked the nurse, what am I? Can I bring a wheelchair with me? She said, oh, you need to contact your local services for that. And my friend came to collect me from hospital and had to carry me into the car because I was unable to walk. No follow up, no nothing. So I was even though I had an answer to what was happening.
I quickly realised there was nothing available there to help me. There was no follow-up made, no nothing. It was at this time I started reaching out to other people with FND and I became aware that there was no direct pathway for people with FND in Ireland, which is insane given that FND is nearly as common as multiple cirrhosis in this country.
It's estimated there's anywhere from 9,000 to 10,000 people living with FND.
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Chapter 5: How does Carys Kenna describe her experience with Functional Neurological Disorder?
So you weren't able to walk. You were discharged and you were given a website. And that was the extent of it.
That was it.
OK, Orla Hardeman joins me as well. Good morning, Orla.
Good morning. First of all, I have to apologise for what happened there on behalf of myself and my colleagues. I mean, that's... That's unconscionable what happened. It would have been true during COVID as well. We must remember that. Of course, yeah. 2021 was during COVID.
So a lot of services were just working on skeleton staff at the time we weren't, you know, the sort of extent of engagement would have been less, but it's still unconscionable what happened. I mean, that should never happen. Functional logic disorder is a very complicated condition that requires multidisciplinary care and a proper care pathway.
And unfortunately, as Mags was saying, we don't really have a good care pathway for that particular condition. It requires a wide range of expertise. It's not a simple condition to manage. You need a group of specialists to manage this condition.
OK, that is an extreme example of what could happen and very unfortunate for Caris. Indeed, I mean, are other patients now that COVID is gone, thankfully, are other patients having a better experience or is the system still under strain?
So the system is under enormous strain. I mean, partly it's a function of the success of neurology and neurological conditions. When I started, and I'm pretty old, there were only 11 neurologists in the country. So we had one neurologist per 300,000.
So we have improved substantially, but the difficulty is if you have a relatively rare set of conditions, relatively common set of conditions, and you increase the number of specialists, you actually increase the demand because the understanding is there that there's a service available, at least some kind of service that should be available. And so we receive more referrals.
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Chapter 6: What are the implications of regional disparities in neurological services?
It's a function of the knowledge base and the knowledge of the potential interventions that we could make is greater. And so we can do more good with more neurologists. But that understanding that we can do more good is also there. So we receive more referrals because we should be providing better care.
If we compare ourselves with other countries, we're not providing the level of care that we should. And most neurological conditions, all neurological conditions, require multidisciplinary care with proper services provided. with neurologists and other specialty services providing a holistic and multidisciplinary level of care to people.
Okay. Magdalene, the Neurological Alliance of Ireland is highlighting regional disparity. I mean, how much of a factor is that?
So that's a very significant factor, David. We did a report, we published a couple of months ago, a report supported by Sanofi. And that showed that, for example, in model three hospitals, which are significant regional hospitals, a number of them were either without a neurology service or a completely inadequate neurology service to meet the needs.
So in our pre-budget submission, which we're launching today, we're focusing in on that issue of patients.
equitable access to neurology service and as I say the lack of or the inadequacy of neurology services in regional hospitals and I suppose Caris experience is a real indication of that need for neurological expertise that they are the only people in the hospital that know and are looking at these conditions and understand what's going on.
Caris you've been able to put a name on your condition which I guess is a start in terms of treatment, in terms of how you're living your life, I mean how are you getting on?
Honestly, at this point, I'm just trying to kind of get through things day to day. At the time all this was happening, I was in my final few years of college and I was also financially independent at the time. I'm from Wexford originally. I was living in Dublin to do my degree in Trinity. And just I felt like I had almost no help at all. I was using the college service in terms of the doctor.
I was trying to keep myself afloat. I was trying to complete my degree. So I did manage to once I had finished my degree, I managed to kind of settle in a place. I managed to get to get a GP up in Dublin and I asked my GP to refer me back. I'm part of a charity, FMD Ireland, and they had recommended being referred to a neuropsychiatry clinic in St. Vincent's. So I asked my GP to refer me to that.
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Chapter 7: How can ā¬2.2 million improve neurological care in Ireland?
That referral was made in 2023. To this day, I have not had any update on it. So my treatment for FND has literally been me trying to best manage the factors that contribute to my seizures. And I just want to emphasize that FND is such a huge condition. Seizures aren't the only thing people get. Now, I'm fortunate that my main symptom is seizures. There's a lot of people out there who...
still can't walk from FND. There's people who have swallowing difficulties, people who can't speak from it. And it's just, there's just such a barrier for access to treatment. I just, you know, any update, I try to get updates on my referral and I just haven't heard anything back.
So I'm essentially in limbo at the moment, trying to use my own knowledge of my condition to kind of get by and live my day-to-day life.
And how do you manage your condition? I mean, what are the triggers for seizures?
So for me, the main triggers are stress and fatigue seem to be the main ones, which unfortunately nearly every activity in life can cause. So for me, the main goal is to kind of ensure that I'm getting enough rest at all times to make sure that I'm not being overstimulated and I'm not overstretching myself.
Normally, to be honest with you, I'm a little bit scared even going out in public by myself in case something happens and I'm on my own.
So you try and be with somebody who knows about your condition?
Essentially, yes. And that's kind of been my main way of coping. Now, I still suffer from seizures, although I think my own kind of way of coping has helped me reduce them. But I am still living with seizures and I'm living with untreated seizures.
And when you do finally get to the clinic, I mean, what is your hope about what that can achieve for you?
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Chapter 8: What is the future outlook for patients with neurological conditions in Ireland?
So what would that achieve? What would that buy?
So really, David, you know, you can hear from Caris and you've heard from Professor Hartman as well, that this really is a service, as I say, under pressure. This service needs ongoing investment. So the 2.2 million would do two things. One, it's to address that disparity in regional services, regional neurology services, the areas of the country that don't have access to neurology.
For individuals like Caris, it's to put those specialist pathways in place, those specialist wraparound multidisciplinary services online. And also a service that we're looking for, again, with that multidisciplinary team, so-called a community neuro rehabilitation team. And again, that's likely a good news story in that those teams have been established in every area of the country.
But we have an outlier in the southeast of the country where there is no community neuro rehabilitation team. So regional neurology services and community neuro rehabilitation services to provide that multidisciplinary care. That's so essential.
OK, Orla, as I say, ā¬2.2 million doesn't sound like a lot in the context of the health budget, but it is money that will have to be found somewhere. But I presume if those services were put in place, it would reduce pressure on the hospital system.
Absolutely. I mean, one of the things that Sloan to Care has proposed and the regional health authorities are implementing... is the idea that we should provide excellent care as close to the person's home as possible. And the introduction of these regional rehabilitation, new rehabilitation services.
are very important in that regard, as is the appointment of neurologists to the areas in which there are poor services. That both limits the inpatient admissions, such as we described by Cara there, the 20 admissions in one year. I mean, that's unacceptable. These conditions, most neurologic conditions can be managed as an outpatient or sometimes with support from a neurologist
in a sort of hub and spoke model through the community services. And we do this very well in some conditions. So I think 2.2 million would go a long way to reduce the regional disparity that we're seeing. and really develop the neuro rehabilitation pathways that provide that integrated holistic care that's required in these really complex conditions such as functional neurological disorders.
You do need expertise in FND to first of all recognise the condition and understand the triggers to the condition and that requires neurology and neuropsychology and sometimes physiotherapy and other special services.
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