Maureen O'Sullivan (Dublin Central, Independent) | Oireachtas source

I was particularly anxious to speak on this issue because of what I know about motor neurone disease which, while it was not specifically mentioned in the Fianna Fáil motion, is a progressive neurological condition. I know about it from a very close friend of mine, a teaching colleague, who battled motor neurone disease very bravely and with great dignity - as much dignity as the illness allows - over the six years she had it. Also, through my work here and involvement in mental health issues, I met the late John McCarthy of Mad Pride who also battled motor neurone disease, for a shorter time. Then there were two former colleagues in the Oireachtas when I came in first - the late former Deputy Michael Fitzpatrick and the late Deputy Nicky McFadden, then a Senator.

I acknowledge the great work that is done by the Irish Motor Neurone Disease Association, IMNDA, and the support that it gives to those with motor neurone disease and their loved ones.

It is a horrible illness, attacking the motor neurone nerves in the brain and the spinal cord which means messages do not reach the muscles and that leads to weakness and wasting to the point where some have no power to do anything for themselves. The cause is not known. There are various suggestions and, therefore, the research is vital on what makes one person susceptible to the illness and another person not.

It strikes people of all ages, even the young. I knew a case of a young boy of 13 years of age who, I think, was the youngest to contract motor neurone disease. Obviously, he did not get long because he was so young when he contracted it. It is progressive. Once diagnosed, the person knows exactly what is ahead of him or her.

There are four main types. With amyotrophic lateral sclerosis, ALS, which is the more common with upper and lower motor neurone involvement, there is a life expectancy of two to five years. Progressive bulbar palsy, PBP, with the symptoms of slurring of speech and difficulty swallowing, has a lesser timeframe. Progressive muscular atrophy, PMA, only affects a small proportion with its weaknesses and clumsiness, and perhaps there is a better life expectancy. At one of the fundraising events I went to, I met a gentleman in his late 70s who had written a book about this. He had lived with motor neurone disease for many years, but his was a different type. Primary lateral sclerosis, PLS, which is rarer, may result in a longer lifespan or be life-limiting. I suppose this shows there is so much that is not known about this.

At the end of their lives, in spite of that inability to do anything, the two individuals who I knew best were in unfailing good spirits. I acknowledge their courage and good humour in the face of that horrible and appalling illness.

I am conscious of those battling motor neurone disease who are watching or listening, and their loved ones also. That is where the support is vital. Many want to stay in their own homes. I acknowledge the care and items - the type of wheelchair that she needed at different stages, the hoist, other adaptations in the house and also the hours of care - my own friend received.

It was a difficult process for the family. Part of the difficulty was the lack of a centralised agency to deal with all aspects of this neurological condition. There were hours of care, but some hours of care came from one agency, other hours came from another agency etc. It was difficult trying to co-ordinate all of that. Then extra hours had to be found when the illness progressed to a fatal stage. I must acknowledge the work of the hospice and the care that it provided. Of course, all of that does not take into account the hours provided by family and friends.

The motion specifically mentions other neurological conditions - stroke, acquired brain injury, multiple sclerosis, MS and Parkinson's disease - on which the same points can be made. There is need for a centralised adequate service which meets the needs of those with a condition.

There is a strategy which was published in 2011 but no implementation plan as had been promised. We are good on providing reports and strategies but we are weak on the implementation. I understand from the motion that a second deadline has also been missed and now it is expected some time in December.

The motion states "it is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them". We do not have the necessary beds. We do not have the requisite number of consultants. We do not have the dedicated specialist medical rehabilitation unit. The lack of all of those makes it even more difficult for those with these conditions. With the necessary services, these people can have a better quality of life in whatever time they have. They should not be living in inappropriate settings and with a disjointed service.

I also have had personal experience in recent times with someone who had a stroke and I would not be satisfied with the care that he received in a mainstream hospital. There were nice physiotherapists who tried to encourage the therapy but there were gaps in the provision. There was no consistency and no urgency or drive with the patient. While the physiotherapists know what to do physically, I must ask do they have the psychological or counselling skills that are needed to motivate the patient. Physiotherapy can be painful and difficult and with elderly patients, physiotherapists need that additional skill because the work is challenging. The alternative, of course, is one leaves the patient in a semi-vegetative state unable to anything for himself or herself.

The same can be said for those in nursing homes with a neurological condition. While the physical care can be excellent, the lack of neurorehabilitation is detrimental.

We know that for stroke victims, treatment must be quick to optimise recovery. Treatment must be provided almost immediately because any delay is problematic. It is heartbreaking for patients to realise that treatment in those first few hours or days that could have made a difference did not happen, not to mention the additional financial costs incurred because they did not get the care they needed when it would have been most effective.

Diet and food play a huge role but there are varying standards throughout the country, although I know there are challenges for the big hospitals. I have looked at various studies on this, including one on a nursing home in Denmark which was dealing with patients with physical and mental disabilities. The patients' diet was changed and made healthier, and dramatic improvements were noted.

The briefing note that came from the Neurological Alliance of Ireland quoted research from 2011 on staff shortages. If similar research was conducted today would the results be similar? The survey drew attention to the importance of voluntary organisations which must be acknowledged. Members will have also received emails from PSPA Ireland, another voluntary organisation that supports a small number of people with particular conditions, namely progressive supranuclear palsy and corticobasal degeneration. As with motor neuron disease, there is no cure to date so rehabilitation and care are vital for quality of life. The group's campaign slogan is "We need our heads examined" and it is calling for implementation of the plans, with clear timeframes, good governance and accountability and the investment that is needed.

When one talks about neurological conditions, the first people to come to mind are Dr. Orla Hardiman and her team, some of whom I met through my own personal experience. Dr. Hardiman has highlighted the shortage of permanent consultant neurologists. I read a report a few months ago which detailed the fact there were 16 such consultants in the country, with a locum in Cork but we should have 39 in the long term, with an interim number of 29. I am not sure about the current figures. The Neurological Alliance of Ireland is highlighting those gaps. It is also drawing attention to the fact that recommendations have been made in numerous reports but that we still lack provision for multidisciplinary, palliative, respite and community care. There is also a need to address the provision of information. When people develop neurological conditions they need to have adequate information. Who will provide that?

I read about three young men with acquired brain syndrome, one of whom I met. Two suffered cardiac arrest while the third had been knocked off his bicycle. They spoke about the uphill battle they faced to get treatment. It was heartbreaking to listen to and read their stories. They were all healthy young men but they did not get the treatment they needed in Ireland. Two of them had treatment in Germany where they made progress. However, when they came back here that progress was not maintained. The treatment provided in Ireland is contrary to best international practice and it also contravenes the UN Convention on the Rights of People with Disabilities, which we will be ratifying soon. I hope that when we ratify the aforementioned convention we will then provide the resources that are necessary for people with neurological conditions because they deserve much better treatment than they are currently receiving.

See this speech in context