Dr. Helen McMonagle:

We are very grateful for the invitation to address the committee and represent the needs of two groups of people, namely those individuals and families affected by a spectrum of neurocognitive disorders known as alcohol-related brain injury, ARBI, and those impacted upon by a collection of neurodevelopmental disorders widely referred to as foetal alcohol spectrum disorder. I am joined by my colleague, Ms Paula Leonard, from the Alcohol Forum. Ours is a national charity that provides support, information and services to people, families and communities impacted upon by alcohol harm. I am Dr. Helen McMonagle, and I am speaking in the first instance in my capacity as a rehabilitation co-ordinator for people affected by a condition that is largely excluded in many national dialogues regarding alcohol, disability and neurorehabilitation in Ireland.

ARBI is a brain injury that is acquired as a result of the toxic effect of alcohol on the brain and the nutritional deficiencies and malnutrition that often accompany this pattern of alcohol use. Over the past seven years of providing support in respect of this condition, I have seen, at first hand, the devastating range of brain-based difficulties that result from ARBI, including difficulties with memory, attention, planning, reasoning and judgment, all of which interfere with a person's ability to lead an independent life. ARBI prevents people from overcoming problems with addiction and exposes them to a range of personal and social vulnerabilities, including risks to their health, safety and personal well-being. This perfect storm of addiction and reduced cognitive capabilities, alongside poor identification rates, results in a vicious cycle of repeated hospital admissions and worsening prognoses for those affected. Four recent reports - the intercollegiate report from the Royal College of Psychiatrists, General Practitioners, Physicians and Neurologists of England and Northern Ireland and reports from the Scottish Executive, Public Health Wales and the Welsh Government - highlight the growing concerns surrounding the increasing numbers of men and women in their 40s, 50s and 60s developing this brain injury as a result of alcohol use, and calls for support services to be urgently developed to meet their rehabilitative needs. Our local research, which we submitted to the committee, and our ongoing work to support people in the CHO 1 area, continue to highlight the health service limbo in which these individuals exist. This condition belongs to no one HSE directorate. It is a condition for which there is no leadership, strategic planning or care pathway for in our country. This is very difficult to comprehend when a recent review of the numbers shows that this condition has had a €6 million burden in three acute hospitals in the CHO 1 area over the last five years. It has been shown internationally to contribute significantly to the burden of dementia, particularly early onset dementia, a large portion of the homeless population, and affects between 0.4% and 2.8% of the general population. One person in eight is dependent on alcohol.

The committee must know that people with ARBI have no natural advocates. They will not self-present to their GPs, local Deputies or the media in order to highlight the inequity that exists for this condition. There is no professional group taking the baton and speaking on their behalf.

Our work with local services in Donegal mirrors the findings of many other sites internationally, namely, that providing targeted supports in this area results in better outcomes for people affected and a reduction in the cost burden relating to the condition. Having just one case co-ordinator, a local care pathway and a willingness among local services to work with people with the condition in the county, we have freed up the equivalent of one bed in our local hospital for two and a half years, or 939 fewer bed days. In cost terms, Letterkenny University Hospital has spent €850,000 less than Sligo University Hospital and €700,000 less than Cavan General Hospital responding to this condition in the past five years.

We know that the detrimental impact of this condition extends beyond the people of Donegal and is a problem across the whole island of Ireland. I am here today to make one request, namely, that this committee mirror the efforts of the Scottish Government and Welsh Government in this area and the intercollegiate efforts elsewhere in the United Kingdom. We ask members to support the establishment of a national working group to scope the needs of this population in an Irish context and deliver recommendations and a strategy to this committee as to the best way to respond to the growing needs of the cohort of affected persons. Without that scrutiny and oversight, my fear is that people with ARBI will continue to perish in silence, being passed from pillar to post and with each service director refusing to take responsibility for the problem, as millions are spent on ineffective delayed discharges at an acute level. We know from international work that it does not have to be like this. Challenging and initiating change in respect of this issue is a win-win for everybody involved. We hope the committee will give our request due consideration in proportion to the scale of the problem we face.