Presentation on Neurological Health Services
Joint Oireachtas Committee on Health and Children
11th February 2014
The Neurological Alliance of Ireland
The Neurological Alliance of Ireland is the national umbrella for over 30 organisations representing
people with neurological conditions and their families. It the only national umbrella dedicated to
representing issues affecting this population, estimated to be over 700,000 people. The Neurological
Alliance of Ireland has played a significant role in developing the policy agenda for neurological
health services in this country, including through their framework document Neurological Conditions
in Ireland: A challenge for healthcare; an opportunity for change. The Neurological Alliance
represents the interests of patients and patient organisations on a range of fora, including the
programme teams for the national clinical programmes in neurology and rehabilitation medicine.
Neurological Health Services in Ireland
There are a number of characteristics of neurological care in Ireland.
-Long waiting lists for access to neurospecialists, including for diagnosis
-Multidisciplinary care is hampered by extremely stretched and underresourced teams, where they
exist, in some neurology centers, there is little access to multidisciplinary support
-Community aftercare and rehabilitation is extremely underresourced and underdeveloped. There is
only one specialised neurorehabilitation community team established in Ireland, working in the Mid
West region.
All of these combine to result in access to neurological care which falls far below what would be
expected in a developed country.
There is a largely disjointed and uncoordinated 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 complexity of the neurological conditions they are living with. The
current service delivery model is a largely episodic model, almost exclusively medical in nature and
does not reflect nor meet the real needs. This is costly and ineffective, not good practice and
incredibly frustrating for patients and families.
Our presentation concentrates on Community Aftercare and Neurorehabilitation
Access to rehabilitation services was highlighted in a case reported on just two weeks ago in the Irish
Times Health Supplement where a victim of traumatic brain injury was informed that there was a 4
month waiting list for one of three high dependency beds in the National Rehabilitation Hospital.
The then clinical lead of the national rehabilitation medicine programme made the following
statement in an interview with the Irish Medical Times in 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 neurorehabilitation services. The results highlighted the critical issue
of access to therapies in the community:
40% could not access neuropsychology services
25% could not access physiotherapy or OT services to meet their needs
The ongoing pressure on therapy services, due to the recruitment embargo and lack of investment,
is impacting significantly on people with neurological conditions. Earlier this year for example, it was
highlighted that there was no adult speech and language therapy service in Waterford city, resulting
in a devastating impact on adults with neurological conditions such as acquired brain injury and
Parkinson’s disease.
The NAI is currently carrying out a national survey of people with neurological conditions and their
families with over 550 responses to date. The survey questions people about their experiences over
the past 3 years to assess the impact of the most significant cuts in health services in recent years.
Preliminary findings from the survey confirm what has been communicated by patient organisations
working day to day with these individuals:
57% impacted by increasing costs of medication
25% reporting having to purchase physiotherapy services on a private basis
17% have had a medical card refused, 10% have had their card withdrawn
84% reporting anxiety about future health cutbacks
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 need to 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
1. Ireland could address a critical issue in relation to neurorehabilitation by putting in place the
community neurorehabilitation teams recommended in the national neurorehabilitation
strategy published 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 these 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.
2. 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 be discharged home with inadequate
care. Either way it leads to long term pressure on the acute system.
3. 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.
4. 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 their
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:
1. Community aftercare for people with a neurological condition in Ireland has
historically been underdeveloped and underresourced and well below what is
routinely available in other countries
2. 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.