Why our neurology services need serious treatment

[ www.irishhealth.com]

By David Neligan

It is widely accepted that the health service in this country is substandard when compared to any of our European counterparts or indeed most in the developed world.

Nowhere is this more evident than in the neurology services currently offered. One often hears members of the public venting their anger about some health issue or another over the airwaves.

As a supposedly indestructible, twenty-something year old male, I never really paid much attention to most of it. But then I got sick and I got to experience first-hand just how bad things were.

About nine years ago, I had my first, what I much later discovered to be, partial epileptic seizure. I ignored it and many more subsequent ones for almost two years until I had my first full-blown seizure.

I visited my GP the following morning for the first time and was referred to a neurologist at a Dublin hospital.

A week or so later I received a letter from the hospital informing me that my appointment was in six months time on a Wednesday morning at 9 a.m.

The day of my first appointment, I arrived at the hospital only to find about forty to fifty other patients also waiting to see the same neurologist, and all with the same appointment time of 9 a.m.

I sat and waited. I read the day’s Irish Times from cover to cover, even completing the crossword, and then waited some more until I was finally called in at about one o’clock in the afternoon. I did not see the consultant immediately but was instead referred to a junior doctor.

He simply performed a routine examination before calling in the consultant. I was told that what I had experienced was an epileptic seizure and I was prescribed some anti- epileptic drugs (AEDs).

I was told that they would have to perform an MRI scan to determine if they could find anything that may be causing these seizures. Following the scan, I would have to come back for the next available appointment… in six months time!

I was far from happy with the service I was getting. I found this delay unacceptable and decided to ‘go private’. I was astounded to find that the first available appointment to see a consultant neurologist was slightly over a year away.

It was only when I went to see the private consultant, eighteen months after my first visit to the hospital, that I was diagnosed with an inoperable brain tumour. This was what had been causing the seizures. However, I was not alone.

According to the Health Service Executive (HSE) Strategic Review of Neurology and Neurophysiology Services, over 700,000 people in Ireland are affected by neurological conditions.

Neurological conditions range from those that are physically disabling, such as multiple sclerosis (MS), muscular dystrophy and motor neurone disease, to conditions for which there is no obvious physical disability, such as migraine or epilepsy.

Others are associated with cognitive decline such as Alzheimer’s and Parkinson’s disease. Many of these conditions are treatable but early intervention is the key. However, we have the lowest number of neurologists per capita per capita in all of Europe.

The unpublished HSE review was not the first report commissioned by the Government. There were reports in 2003 and 2005.

Among the recommendations contained within these reports were the following: the setting up of three new regional neurology units in Limerick, Sligo and Waterford, with each of these having two neurologists; a long term target of 39 neurologists for the country (currently we have 20); an interim target of 29 neurologists; the long term target for Cork to be 13 neurologists; an increase in neurophysiology posts from three to nine; doubling the number of neurosurgeons in Ireland from nine to 18.

The most recent HSE report recommended that we should have at least one neurologist for every 100,000 people.

One leading consultant neurologist recently spoke of neurology services as a  “scandal waiting to happen,” and said he had a public waiting list of two years and a private one of over two years.

He said the Department of Health and the HSE were far more reactive than proactive and seemed reluctant to invest in neurology services.

The question must be asked: why has there been no improvement in the neurology services in Ireland despite three reports commissioned and prepared both by and for the HSE as well as an additional paper from the World Health Organisation and the MS International Foundation?.

The Government may now try to use the excuse that due to the current economic downturn, it is impossible to implement recommendations for improved services because they cannot afford it.

Even during the times of the so-called Celtic Tiger, the Government and HSE failed to carry out any of the recommended improvements.

There are also major problems in accessing neurosurgery.

As a result of a  major shortage of neurosurgeons, waiting lists for non-emergency surgery are ridiculously long, with many patients waiting well over a year. Plans to double the number of surgeons have been under discussion for years.

Speaking on RTE’s recent Surgeons programme Prof Ciaran Bolger, consultant neurosurgeon at Dublin's Beaumont Hospital, said if a patient has a brain tumour, the only place he can operate on them, whether they have private health insurance or are a public patient, is Beaumont.

“So you go onto one waiting list. There’s no difference between public and private patients. If you have a brain tumour, it doesn’t matter how much money you have or how little you have, you’re in the one system. That’s good in one way in that everyone is treated the same but unfortunately it means that everyone is treated the same way - badly. We need twice as many neurosurgeons, we need twice as many beds and we need more operating sessions”.

You’d think that getting a brain tumour would be a death sentence but that isn’t necessarily so. At the same time, a brain tumour can be catastrophic whether it is benign or malignant. Brain surgery can have awful consequences.

It can affect memory, aspects of personality, speech and it can even paralyse you in various different ways. Most neurosurgery only improves a patient’s quality of life rather than providing a cure. Technically, you can take out any brain tumour. The only problem is how much of the brain you damage by taking it out.  

In my own situation, to cut a very long story short, following my original diagnosis, I was prescribed various cocktails of AEDs. They never appeared to do me any good whatsoever.

Over the years my situation deteriorated significantly (I was having between four and 10 seizures daily) until the only solution remaining was that my inoperable tumour would have to become operable. Most of the tumour was successfully removed and since then the quality of my life has dramatically improved.

What did all this teach me? It gave me a very different perspective on life and taught me not to take things for granted. It taught me to make use of the time I have and gave me a much greater appreciation for life.

It also taught me that the neurology services in Ireland are worse than substandard, which is truly inexcusable for a country having experienced so many boom years. Something needs to be done to remedy the situation most urgently.

The blame for this malaise cannot be attributed to the consultants. In my personal experience, they are very far from being a cosy cartel, worried about having to share the spoils of their private practices, as the HSE would have us believe.

Indeed it is these overworked, overstressed and severely under-resourced consultants themselves who are spearheading the call for more consultants. I, for one, am eternally grateful to all the extremely dedicated doctors and nurses who have helped me get to where I am today…and in one piece.

broken1  Posted: 05/06/2012 12:04

i am in the position of having neurological decline and will need an electric wheelchair, as will my identical twin. our care is less than adequate, we are on the list for the wheelchairs, which we have tried out on the local roads and then they were whipped back to where ever they go to, we are left seeing them depart, so we go on the list. then of the consultants. not mentioned in file notes for two years although seen neurology in last month! a conflict of diagnosis and no answers and referred on to the patient representative. very hard to get an appointment as neurology just will not answer and commit to appointments. recent A;E admission, mri done, so far no results whatsover. i dont know where we go from here. twin and i have rare syndrome so many many health issues, all being addressed in crisis critical presentation and no communication between many consultants. we get caught in the mellee which is 'health cuts.' we despair.

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