It takes up to two years to get a first appointment with a neurologist, because of a lack of specialists. A new patients' alliance is fighting for improved services.
Joe Mooney is 37 and has a good job as a chief executive. Last month, however, his application for mortgage protection, so he could buy a home for himself and his wife, Aisling, was turned down. It was because he has muscular dystrophy. Not surprisingly, he is extremely upset, but he's also very concerned about the implications for people with similar neurological conditions. "Do we all have to go to council houses? Is that the way we have to go?" he asks. He plans to go to the Equality Authority. "It's terrible discrimination."
Mooney uses a wheelchair, but he doesn't want to be a burden on the State. He wants to buy a home of his choice and be independent. He has worked all his adult life to achieve this, despite being born with a condition that weakens and wastes the muscles. He took a secretarial course in his native Carndonagh, Co Donegal, after leaving school, then worked in a vet's office. Not content with working for somebody else, he went on a start-your-own-business course and ended up setting up one with his brother Seamus, to design and distribute disability aids. It didn't work out. "You needed big money to invest, but unfortunately we didn't have it."
Still determined, Mooney looked for other business ideas. He set up a mushroom farm, which he ran for five years. Seamus, who also had muscular dystrophy, was involved in this venture, too, but he died at the age of 25. The mushroom business proved difficult. "It wasn't viable, because at the end of the day mushroom farming is a very physical job, and I had to pay all the time for somebody to do the work. To take two wages out of it was nearly impossible."
He leased the business and moved to Dublin, where he is now the head of Muscular Dystrophy Ireland. "It's not like the old days, when the mentality was that people like me should be looked after and minded. It is your right to live the way you want, and it has been hard to get that message across to some people," he says.
For many to live the way they want, however, they need personal assistants, for which there are long waiting lists. This and issues about housing, mortgages and more timely access to specialist health services will be among the many topics that a new organisation will campaign to have addressed. The Neurological Alliance of Ireland, which represents up to 500,000 people, will also be fighting for more consultant neurologists. There is just one for every 333,000 people in the Republic, compared with one for every 177,000 in the UK and one for every 8,000 in Italy. As a result, patients have to wait months to be seen.
Dr Orla Hardiman, a consultant neurologist at Beaumont Hospital in Dublin, says the waiting lists are "horrible". It takes up to two years for a patient's first appointment, once referred by a GP or other specialist. Then, if patients require admission to hospital, they will have to wait another nine months or a year. "It's very difficult for patients and very frustrating working in a system like that. You have to prioritise even though you know you should be working on all their behalves," she says.
Dr Hardiman, who is the alliance's medical adviser, is also concerned about the lack of multidisciplinary teams working with patients once they are diagnosed with neurological conditions, which range from epilepsy, dementia and Alzheimer's to motor neurone disease. She points to a huge shortage of occupational therapists in particular. "Not enough of them are being trained, they are grossly overworked and \ reach the peak of their earning potential 10 years into their career. As a result, many of them leave Ireland. There are many parts of the country served by only one or half an occupational therapist, and they have to prioritise patients into three categories. If you fall into the first category you will be seen, but if you fall into the second or third you will never be seen. It's a disgrace.
"In order to develop neurology, we need to develop those disciplines as well. Putting in more neurologists alone will not solve the problem."
As an umbrella organisation for 23 voluntary groups and professionals working with people with neurological conditions, the alliance will be a powerful lobby group - and is set to become a thorn in the side of Micheál Martin, the Minister for Health and Children. "Our motto is Unity is Strength," says Audrey Craven, its chairwoman. "We can achieve only so much as individual organisations, but I think collectively we are a much stronger voice. I know from experience that governments around the world are much more inclined to talk to umbrella organisations than individuals, especially when you have worked out your mission and have a set of aims and objectives that are agreed."
Craven says the health service has neglected neurology for far too long. "We have been like a Third World country in relation to consultant-neurologist appointments, for example. I see the service now like a greenfield site, and we have plans for how it should be developed if the political will and finance is there."
The alliance has drawn up standards of care for treating patients with neurological conditions. "We have done our homework, and funding our programme would genuinely benefit people with neurological conditions. It would not be putting money into a black hole."
Early access to a neurologist is especially important for sufferers of motor neurone disease, according to Eithne Frost of the Irish Motor Neurone Disease Association. "Time is of the essence, because this is a relentlessly progressive neurological condition. There are no remissions, and in fact the vast majority of sufferers don't live beyond three to five years. However, there is medication which can slow down its progression, and the sooner people are put on Riluzole the better, but they can't be put on it until they are seen by a consultant neurologist," she says.
Joan Bradley, who has post-polio syndrome, believes the alliance will be a vital advocate for patients who have to fight for services they should be entitled to. Bradley, who is in her 60s, has also worked all her life and is horrified at having to campaign for aids and appliances for herself and other sufferers.
"It's an indictment of the Government that they will not help us while we are here. The average age of the 7,500 post- polio-syndrome sufferers in Ireland is 55, and 95 per cent of all survivors of polio worked at some stage and paid into the social-welfare system, yet here we are today in our 50s and 60s and we haven't got what we need."
Bradley, who is originally from Co Laois, contracted polio when she was four years old, losing the power of her limbs. By the age of nine her condition had improved enough for her to go to school, where she proved to be a high achiever. She went on to study radiography, but three years into her career her condition forced her to abandon it.
She became a switchboard operator and worked in an office for more than 35 years before taking early retirement, two years ago, because she needed to rest during the day. Now she spends much of her time doing voluntary work, mainly manning a helpline for people with post-polio-syndrome.
The difficulties they encounter are unbelievable, she says. "I had a lady this week who was going to be discharged from a step-down bed without anyone checking to see what services would be there to assist her once she got home. She lived alone. This woman wasn't even able to sit up or dress herself. There seems to be nobody watching to see what is happening down the line. We need to put money into community services and have greater co-operation between hospital-based and community-based services, with emphasis on the needs of the patient. The alliance will hopefully help with that.
"We had another lady who went for physiotherapy two or three years ago, and when she inquiredwhen her next session would be she was told it would be in 12 months.
"And, more recently, a woman told us she was informed by her health board she would have to wait four years to be seen by an occupational therapist. We have made presentations to the Government, but we haven't really received any concrete help. We were told we would be dealt with sympathetically, but sympathy hasn't been shown."
Micheál Martin ordered a review of neurology services in 2001, but there's still no sign of the review group's report being published. And given the state of the Department of Health and Children's finances and the cuts planned across a range of health services this year, it may be difficult to find money to implement any recommendations it may eventually make.