The sorry state of neurology in Ireland: one year on

Last year I attended a meeting in Leinster House, the seat of the Irish government, organised by the Neurological Alliance of Ireland (NAI) to highlight the sad state of neurology in Ireland. What I heard and saw that day is still very much etched on my memory because of the impact it had (see blog post of 2013 here).

It was with great interest so that I attended the launch last week of the results of the 2014 national survey called ‘Living with a Neurological Condition in Ireland’ organised by the NAI in the Mansion House, Dublin.

The 2014 survey, which took place online between January 2014 and February 2014, examined the following aspects of living with a neurological illness:

Ψ Profiling Changes in Access to Services
Ψ Impact of Specific Cuts and Changes to Benefits and Entitlements
Ψ Profiling the Experiences of People with Neurological Conditions as a Group
Ψ Profiling the Experiences of Family Carers

In total, 601 people anonymously responded to the survey, the high number of respondents a success, reflecting the need ill people had to be heard. The need to be part of a solution toward better neurological services in Ireland, added value.

It’s quite clear that – even after the request of Ireland’s top neurologist to be angry at policies and health politics during the 2013 talk in Leinster House – neurology in Ireland continues to be a battleground on which patients are being hijacked by savage government cutbacks.

After stumbling my way through the 2014 NAI report (all 24 pages of it), I couldn’t possibly translate every eye-opening statistic as a person with neurological illness myself, and without getting angrier as page after page seemed to hit me harder and harder. While I need neurological services myself, I make do with what I still can do, or force myself to do. Once again, though, I truly feel for those in much worse situations than I am, because they are in a category of ill people not only time, but government after government seem to forget.

Of those who replied to the survey, 71% (425 people) are living with a neurological condition. The remaining 29% who replied, are family members of people living with a neurological condition.

The most common illnesses, where patients who replied for themselves, were:

Ψ Multiple Sclerosis (27%)
Ψ Epilepsy (21%)
Ψ Migraine (20%)

Where family members replied for those with neurological illnesses, the most common conditions were:

Ψ Epilepsy (25%)
Ψ Multiple Sclerosis (18%)
Ψ Muscular Dystrophy (17%)

The length of time people living with their neurological illness, was 45% longer than 10 years, 23% between 5 and 10 years and 16% between 3 and 5 years.

Half of respondents were in receipt of a medical card and 47% were in receipt of a social welfare payment as a result of their condition.

Employment figures are even bleaker than those figures above: “66% of respondents in total were working before the onset of their condition, 47% reported that they had to give up work while 18% had to cut hours as a result of their condition. These findings echo the results of recent research on multiple sclerosis, which indicates that 50-60% people have had to give up work following diagnosis.”

One of the most staggering results of the survey are those of getting access to services the past three years:

Ψ 28% said it has become more difficult getting a consultant neurologist appointment
Ψ 27% reported getting access to a neurosurgeon harder
Ψ 30% said it’s harder getting an MRI scan appointment
Ψ 34% reported getting a physiotherapy appointment more difficult
Ψ 45% said, getting respite care became harder the past 3 years
Ψ 47% said aid, appliance or specialist equipment being much harder to get

The percentages of people who haven’t been able to get services at all have all increased between 2011 and 2014 in these areas:

Ψ Consultant Neurologist Appointment
Ψ Specialist Nurse
Ψ Physiotherapy
Ψ Speech & Language Therapy
Ψ Occupational Therapy
Ψ Psychology
Ψ Respite Care
Ψ Aid, appliance or specialist equipment
Ψ Adaptation to my home

In the area of benefits and entitlements over the past 3 years,

Ψ Almost half of respondents, 46% reported a significant effect of increased cost of medications for their condition
Ψ 45% reported a significant impact of changes to the mobility allowance
Ψ 41% have been significantly affected by cuts to home care packages

Over one-third of respondents were dissatisfied with aspects of service provision to meet their needs, including:

Ψ Support in Planning for Future Needs: 40%
Ψ Psychological Support around the effects of the condition: 37%
Ψ Understanding of their condition by health professionals: 35%
Ψ Getting referred to services: 34%

Levels of reported dissatisfaction were higher for family members responding on behalf of a person with a neurological condition.

What scares me most of all though, is the projection the Central Statistics Office put forward, saying that:

Ψ In 2011, the CSO estimated that 762.960 people in Ireland would live with a neurological illness
Ψ By 2016, a whopping 824,743 will be affected
Ψ By 2021, an estimated 869,143 people will live with a neurological condition

This means that the projection also estimated that:

Ψ In 2011, a total of 44,880 would be diagnosed every year
Ψ By 2016, neurological illnesses would target 48,110 people
Ψ By 2021, a staggering 50,700 people would need to be able to avail of standard services that people with neurological people require. Not as a side dish to their everyday healthcare, but as a primary source of health care

A large part of Ireland’s population, so, already lives with an illness that affects their brain and spinal cord, the life-line of every human being. Yet despite statistics like this, Ireland’s national health department finds it OK not pouring extra funding in neurological services across Ireland.

Historically, demands for this kind of care kept increasing, while positive reinforcement of governments past, kept on suffering from their own kind of neurological illness, i.e. selective memory loss when these services so clearly demanded upgrades.

When you know that due to the nature of neurological conditions, patients need a large set of physicians and therapists, sometimes up to 40 healthcare professionals, then the question indeed is one of how you can balance governmental budgets versus value of life and life expectancy of a neurologically ill person. Pharmacoeconomics have a strong a hold over patients, but the HSE doesn’t seem to care, and this needs to stop.

However, that doesn’t mean that politicians can or should not invest in this specific type of health care. In fact, they should invest year after year, not only to reflect an aging population, but also to show how well a government understands, supports and treats its electorate.

The meeting in Leinster House last year, showed that a reconfiguration of existing could be done at no cost at all to the government, while they would get excellent services in place. This never happened.

In fact, one year later, nothing has changed. At all.

What if it was your mother, brother, father, sister, son or daughter, dear politician, who would need specialized care? Do these statistics not scare you? At all?

(excerpts on this blog post were taken from the NAI report, which can be found here).

For more info, please check these websites:

NAI

NAI Pre-Budget Submission 2014

National Disability Authority

Disability Federation of Ireland

Convention on the Rights of People with Disabilities

United Nations Enable

MS Ireland

Central Statistics Office

Houses of the Oireachtas

Budget 2014

The Sorry State of Neurology in Ireland

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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2 Comments

  1. Coming from the U.S. patient view, I’m not surprised at all by the numbers. I think there are a few underlying issues for both our healthcare systems. For example, we act like we need perfect information to the point of overspending on tests which will not change our decisions/treatment course. I think of MRI’s and MS flares. I was always told to report symptoms that last for more than 24 hours. Then comes the studies of the the window when steroids are beneficial,,,the first 24-48 hours (from the MSresearch blog out of Cambridge). Beyond that, the effects are minimized. So if I wait 24 hours to report it, should I really expect an MRI that day? If not, why bother to have it? What should it change for me to know, “yes sir, you are having a flare.” Thanks. I got that when I kept feeling like my head was going to explode and my eyesight kept going to the all snow channel.

    However, many need the doctors to “do something” to set their mind at ease. So the doctors order the MRI or prescribe the steroid (or worse for the general public they prescribe an antibiotic). We expect miracles even if none are known. In addition, by golly, we show we will pay for them to the point where the number 1 cause of bankruptcy in the U.S. is medical bills. Of course with our instance on pretending we have a free market in the U.S., the drug companies charge what the market will pay. I question my drug costs all the time. Without my good insurance and an pharmaceutical copay assistance plan, my Tysabri would cost more per year than putting one of my kids through four years of college.

    Is it fair to think my drug costs could keep open a soup kitchen for the inner city hungry? That is a hard weight of guilt to bare, thinking my productivity at home and at work is purchased at such an opportunity cost to society. I’ll grant there is no way the money for my drugs could ever be set towards feeding the needy, but I still think of it as less than efficient usage of money by our society. I do not feel worthy of the suffering of so many.

    While I think more could be done for the many who suffer from neurological conditions, at some point we need to start asking the “should we” to determine the best course, and we need to educate patients better on their actual risks, options and costs.

    • Billie says:

      You’re so right Geof, but firstly I want to apologise for my slow reply to your comments. I do read them with great care, but as you probably know, our MS memory shows decent size holes of forgetting things if not done straight away :

      The issue is that Ireland is a welfare state, with ill people, children and elderly people getting benefits you would not find in other countries. Because of the Celtic Tiger (economic boom), the government was able to put a lot of benefits forward. With the recession of 2008, a lot of those benefits were changed or withdrawn. Still, Ireland is still a welfare state, i.e. even without insurance, my medication costs me €2.50 per item ($3.45 per item but it used to be totally free years ago). This means that my high tech medication like my Copaxone, only costs me $3.45 each month. From what I hear in the US, people have to pay a lot more. I was told many years ago, that Copaxone was $17936 per year.

      I also would love to know what the real price is of all my medication, and I will look into that today. Pharmacoeconomics looks at the cost effectiveness of all new medicines, but how do they truly know? A couple of years ago, our health department refused to allow MS patients’ access to Gilenya (Fingolimod) because of its cost to the health department. True, at $31742 per annum, it is indeed an expensive drug. The issue was however that the Irish pharmacoeconomics deemed it cost effective to patients, yet the government blocked access. With a lot of lobbying it was eventually given to patients who fell into the right category of people with MS.

      But was does ‘cost-effective’ means to a government? My story ended up in several newspapers because I desperately wanted to get my hands on Gilenya because I wanted to return to the workforce. The government’s ‘no’ meant that they refused to see past the cost-effective issue. My statement was “Imagine how cost- effective I could be to the Irish state if I could leave my early retirement (because of severe fatigue and mad pains) and if I could be part of a capital spending program. What does a government know about people like me desperate to return to work? Imagine how I could put loads of money into the economy if I would earn decent wages while spending money and giving back to the local economy?” Yet the government still told me that I would not get Gilenya; I’ve forgiven them now, though, because at the end of the day, you need to be in a specific MS category before getting Gilenya, and I was and still am not in the right category.

      All this just shows that behind the medical wall, there is a very strong economic wall. Do I wish the money that is spent on my medication could be used to feed a decent amount of homeless people? Absolutely. Do I wish to live with less medication? I have tried but my nerve pains and fatigue are as such that I simply cannot do without. I wished I didn’t have to be such a burden on the Irish economy, but it is what it is. Sure, if I want to get an MRI scan on my public healthcare plan, I have to wait ages before getting it. I don’t mind though; there are people who need urgent scans far more than I do right now.

      At the end of the day, I believe there is a whole lot of spin that goes on in government buildings, spin we will never ever know about. Why do they not think of neurologically ill people? Why this, why that? Like you say, people need to be better educated, but if you’re not given the right facts, you are only taught wrong information. That is why I wrote that I would love to have the brain of my neurologist, to find out how badly things are, or why this, why that. Hence my drive to attend meetings like the result findings of the Neurological Alliance. While they are not scientifically supported, it does give a good overview of what is going on. Pushing politicians has become one of my favourite pastimes now, because they need to learn the human side of it, and not just technicalities’ and raw data. With people like yourself, who also wants to learn more about it, I feel we are like citizen journalists, and it’s up to people like you and me to show the world that we are not just statistics.

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