Ms Magdalen Rogers:

The Neurological Alliance of Ireland is the national umbrella for more than 30 organisations representing people with neurological conditions and their families. It is the only national umbrella dedicated to representing issues affecting this population, which is estimated to be more than 700,000 people in Ireland. The Neurological Alliance of Ireland has played a significant role in developing the policy agenda for neurological health services in this country. It represents the interests of patients and patient organisations on a wide range of fora.
There are a number of characteristics of neurological care in Ireland. They include long waiting lists for access to neuro-specialists, including for diagnosis. In addition, multidisciplinary care is hampered by extremely stretched and under-resourced teams, where they exist, as in some neurology centres there is little access to multidisciplinary support. Moreover, community aftercare and rehabilitation is extremely under-resourced and underdeveloped. There is only one specialised neuro-rehabilitation community team established in Ireland, working in the mid-west region. All these characteristics combine to result in access to neurological care that falls far below what should be expected in a developed country. There is a largely disjointed and unco-ordinated approach in this country for those who require neurological care and neuro-rehabilitation. Individuals and families require services on a continuum basis, due to the nature and often the complexity of the neurological conditions with which they are living. The current service delivery model is largely episodic, almost exclusively medical in nature and does not reflect or meet the real needs. This is costly and ineffective, not good practice and incredibly frustrating for patients and families.
Our presentation today concentrates on community aftercare and neuro-rehabilitation. Access to neuro-rehabilitation services was highlighted in a case reported on just two weeks ago in the health supplement of The Irish Times, in which a victim of traumatic brain injury was informed there was a four-month waiting list for one of three high-dependency beds in the National Rehabilitation Hospital, NRH. The then clinical lead of the national rehabilitation medicine programme made the following statement in an interview with theIrish Medical Timesin 2011:

There are insufficient numbers of rehabilitation medicine consultants, insufficient access to specialist rehabilitation at a local level, lack of support for primary care teams in managing very challenging cases and lack of support for the patient and their families. Even if a patient has been through the services of the NRH, once they get discharged they’re very often left in a kind of limbo.

The Neurological Alliance of Ireland carried out a national survey in 2013 asking patients and family members about their access to neuro-rehabilitation services. The results highlighted the critical issue of access to therapies in the community as 40% could not access neuropsychology services and 25% could not access physiotherapy or occupational therapy services to meet their needs.
It is difficult to propose comprehensive solutions to the complex and wide-ranging challenges affecting neurological care in Ireland in the scope of this brief presentation. However, it is clear that steps must be taken to address the critical lack of aftercare services for people after diagnosis or onset of a neurological condition. There are salient points which can be made in this regard this evening. First, Ireland could address a critical issue in respect of neuro-rehabilitation by putting in place the community neuro-rehabilitation teams recommended in the national neuro-rehabilitation strategy published by the Government in 2011. To date, there is only one such team in the mid-west. The steady erosion of community-based therapy provision and the lack of new investment will significantly hamper the establishment of those teams. Case management is essential for those with complex needs, such as people with acquired brain injury, to avoid the type of disjointed care experienced by these individuals.

Cuts in community health services are critically impacting on people with neurological conditions who are among the most dependent on such supports. Cuts to home care packages are forcing people to stay in acute units or to be discharged home with inadequate care. Either way it leads to long-term pressure on the acute system.

The medical card is a vital portal to services for those with chronic illness. Not having a medical card excludes people with neurological conditions from many of these supports. Ireland is uniquely reliant on not-for-profit organisations to provide neurological health services that are normally provided by the state in other jurisdictions. The reality is that the infrastructure of community-based neurological care is hugely reliant on the services provided by patient organisations. Disability organisations have seen a 15% drop in funding in recent years and many have had to close or curtail services to people with neurological conditions.

The message which we want members of the committee to take from our presentation is that community aftercare for people with a neurological condition in Ireland has historically been underdeveloped and under-resourced and well below what is routinely available in other countries; and the services that are in place are being decimated by cuts to community health services which are significantly affecting the quality of care available for people with neurological conditions in this country.