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 in my memory because of the impact it had (see blog post of 2013 here).
It was with keen 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 in 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 honestly 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 answered, are family members of people living with a neurological condition.
The most common illnesses, where patients who answered 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 the respondents received a medical card, and 47% received a social welfare payment as a result of their condition.
Employment figures are even bleaker than these numbers 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 tremendous 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 more difficult getting an MRI scan appointment
Ψ 34% said 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 Speech & Language Therapy
Ψ Occupational Therapy
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 in 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 predicted 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 regular services that individuals 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 lifeline 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 living with 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 national budgets versus the 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 particular 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? Does these statistics not scare you? At all?
(excerpts from this blog post were taken from the NAI report, which can be found here).
My UNCRPD Posts for the MS Society
- Access to the United Nations Convention on the Rights of Persons with Disabilities
- United Nations International Day of Persons with Disabilities
- The General Election- One MSer’s Perspective
- Budget 2016
- UNCRPD – Getting Ready to Ratify (1)
- UNCRPD – Getting Ready to Ratify (2)
- UNCRPD – The Right on Participation in Political and Public Life
- Disability rights in Ireland
- Disability rights in Ireland, 3 years later
- The sorry state of neurology in Ireland
- The sorry state of neurology in Ireland, one year on
- Disable Inequality campaign
- Irish public transport: access all areas?
- Disability is never cured with one pill alone
- UNCRPD in Ireland – begging for change
For more info, please check these websites:
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