October 15th 2013 is drawing nearer and nearer. What the government might perceive as getting closer to stepping away from austerity measures and recession, disabled people are once again holding their breath of fear of finding out if they will be attacked once more. Since 2008, Irish and foreign people living in Ireland have given more than they could bear, but people most in need of help and support have had to keep on giving.
Drip-feeding information by government ministers has become standard as a way of softening the blow to many, but what if plans can be easily adjusted, even when there are no extra costs for doing so, were ignored in our previous budget and the many ones before?
Earlier this year, I attended a lobby group of the NAI (Neurological Alliance of Ireland), the Irish MS Society and other disability groups to protest in- and outside Leinster House. Since May 2013 was the European Month of the Brain, and since Ireland hosted the European Presidency until the end of June, the NAI wanted to bring forward facts and figures, as well as personal stories to people in government. Many deputies and senators attended the meeting, which was good to see. Neurology in Ireland however, is still overlooked when it comes to bringing in new measures that help make neurology services run the way they should be run.
In its Pre-Budget Submission plan for 2014, the NAI said “Over 700,000 Irish people are living with a neurological condition. The challenge of neurological disease was recognised by the Irish government in May of this year, when they hosted a Europe wide conference “Healthy Brain Healthy Europe” in partnership with the EU Commission as part of events for the Irish Presidency of the EU. Speaking at this event, Minister James Reilly noted that “the challenge of diagnosing, treating and caring for those affected by brain disorders is daunting”. He pointed to the commitment of the Irish government, along with other EU countries, to the development of co-ordinated brain research but also healthcare strategies for brain conditions across Europe”.
People with neurological illnesses ask the government to follow up on those healthcare strategies that surely should help their further care. The NAI also stated that “One third of carers of people with neurological conditions were significantly impacted by cutbacks and 30% reported a significant impact on the person they cared for. The NAI is calling for a halt to a year on year succession of cutbacks that are continually eroding services and supports for people with neurological conditions and their families”.
The hurt of being diagnosed, the smashing of dreams that need to be rebuilt and a call to others for help and support in those first few years of living with a neurological illness is something people not living with it, can understand. I therefore want to point out some facts and figures to you because the government cannot keep ignoring neurologically ill people. Just to give you an idea, here is some data the NAI relayed to us during that Leinster House meeting at the end of February:
Ψ 38% of patients, more than 5,580 people are waiting more than a year to see a neurologist in a public hospital outpatient’s clinic
Ψ Over 1000 patients are waiting more than 4 years for a hospital outpatient’s appointment
Ψ 989 out of 2,700 patients requiring neurosurgery have been waiting more than six months
Ψ Ireland has 7 rehabilitation consultants; if we had 50 we’d still have the second lowest per capita rate in Europe. If we had 150 consultants, we’d have fewer per capita than Serbia, Czech Republic, Estonia, Latvia and Croatia
Ψ Just one is six people of the 15,000 per annum with serious conditions requiring specialist neuro-rehabilitation services can access these
Professor Orla Hardiman, consultant neurologist in one of the biggest hospitals in Ireland, stated that with only 33 neurologists in Ireland, Mongolia has more than Ireland has, despite having fewer inhabitants (Mongolia has approximately 1 million less inhabitants than Ireland). She also mentioned that “the brain is who and what we are, and therefore we have to invest and properly manage who and what we are”. A heart transplant is easy enough these days, but brain transplants belong in the world of fantasy. Because of that, urgent reconfiguration of existing services should be done. This would cost very little but would yield excellent neurological care for all those who have a neurological illness.
Professor Hardiman begged people to get angry about the lack of decent services, and hearing her request, I was, am and will continue to be angry at how bad things are. When I go for my neurological checkup, I am angry when I see carers with their severely disabled family or friends, who are sitting in motorised wheelchairs, having to travel 260km to come by car or train, all the way from the north-west of Ireland to Dublin… for a 30min checkup. After those few minutes with their consultant, they face another horrendous drive home.
I am angry because this is cruel behaviour from people who should know better, it is something you just do not do to disabled people unable to talk, unable to go to the toilet by themselves. It’s an injustice to someone already dealing with unjust, physical disabilities.
The NAI had this to say in February: “14 months ago the government published a national neuro-rehabilitation policy. Even though this focused on cost free service improvements through reorganisation, no progress has been achieved. Even the undertaking to develop an implementation plan has not been kept. Meanwhile service deficits continue to worsen due to the impact of cuts on frontline care provision in every constituency.” (Note that today, it is now 21 months since the national neuro-rehabilitation policy was published!)
But where is the proof that the government is looking into improvements? It’s not in hospital wards or neurologists’ offices. In the meantime people are waiting on a diagnosis that might change their life forever, others are waiting on follow up examinations after being diagnosed and put on long waiting lists. The proof is not in having more neurologists at work in faraway places like the north-west of Ireland, and it’s not in having proper neuro-rehabilitation services.
In fact, Ireland has never invested in neuro-rehabilitation services, even though this would have a good outcome on our economy because people could get back to work, or wouldn’t have to pay for expensive nursing homes and would not have to be readmitted to hospital over and over again. I’m not an economist but to me this all sounds very easy to solve: cheap reconfiguration of services and more tax income of people going back to work. Neurological services is a child waiting and wanting to grow up into a worthy service that would benefit the 700,000 people living with a neurological illness in Ireland.
Neurologically ill people living in Ireland therefore deserve the right to good services and disability support when needed. You, me, the person sitting next to you on the bus and the stranger in the bank, the bus driver, the homeless person on the street, the child in its pram and the elderly, the ill and the needy demand services that will help our longevity and our happy-go-lucky attitudes. We demand that we, as sick people are listened to, understood and protected.
I myself am one of the fairly lucky ones. I have a fantastic GP and neurologist and the rest of my medical team is a phone call away when I need them: two MS nurses, neuropsychologist, ophthalmologists and physiotherapist and when I do, I am being referred to them. I might have to wait a few weeks or months, but at least I am living in a Dublin suburb, in the vicinity of two of my attending hospitals.
Severe fatigue will always be my biggest and main disability and because of this I had to retire from work at the age of 36.5, but now I can rest and sleep when I feel I need to, which in all honesty, is a few hours during the day, every single day. My other chronic and painful symptoms (trigeminal neuralgia, optic neuritis, cognitive issues etc.) are handled by my GP and pharmacy which are just a stone’s throw from my house. Yes, I do live with adversity daily because of my own neurological illness, but imagine living in rural Donegal though… in a wheelchair, bound to carers for your every need, having to sit in a car for 7 hours to have a 30min checkup.
So I urge you, as TD, to please listen to our pleas and stop cutting services and financial support to ill people. We simply cannot give any more.
Thank you kindly for taking time out to read this letter,
For more info, check the Neurological Alliance of Ireland website: www.nai.ie
They can also be found on Twitter on @nai-ireland and on Facebook on Neurological Alliance of Ireland (NAI)
MS Society of Ireland: http://www.ms-society.ie/
MS Ireland lobbying for better neurological services: http://www.ms-society.ie/blog-articles/1310-5-580-neurologist-waiting-list
(reblogged under this title as the previous post went missing in action)
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