Ms Magdalen Rogers:

I wish the Chair, committee members, and fellow presenters a good morning. On behalf of the Neurological Alliance of Ireland, I thank the members of the committee for the opportunity to appear in front of it today. Our umbrella organisation represents more than 30 not-for-profit organisations providing specialists supports to people with neurological conditions and their families.

I commend the committee on recognising the specific needs of people with neurodisability in extending an invitation to our group. According to the World Health Organisation, neurological conditions affecting the brain and spinal cord now represent the leading cause of acquired disability worldwide, with an estimated one in three people worldwide affected by a neurological disorder at some point in their lifetime. More than 800,000 Irish people are living with a neurological condition, with an additional 50,000 diagnosed each year.

The UNCRPD has wide ranging relevance and implications for people living with a neurological disability. We want to focus today on one of the most critical articles of the convention when it comes to people in Ireland living with a neurodisability. Just to note, we identified many of the issues that will be raised today in our submission on lived experience to the committee back in November of last year. Article 26 of the convention calls on State parties to provide comprehensive rehabilitation services and programmes for people with a disability. The capacity review of disability services published by the Department of Health in July of this year specifically recognises the major shortfall in timely access to rehabilitation for people with a neurodisability and the critical need for investment in neurorehabilitation services.

My co-presenter today, Dr. Niall Pender, brings a front-line perspective on the importance of neurorehabilitation services from his role as principal clinical neuropsychologist in the national neuroscience centre, where he is confronted on a daily basis with the life-changing impact of conditions such as stroke, acquired brain injury and spinal injury as well as progressive neurological conditions, such as multiple sclerosis and Parkinson’s disease.

The national neurorehabilitation strategy was published a decade ago in 2011 and the current programme for Government includes a commitment to its implementation. A three-year implementation plan was finally published in 2019 and it comes to an end this December.

I want to highlight to the committee today that Ireland will not meet its obligations under the UNCRPD unless and until the neurorehabilitation strategy is fully implemented. In our response to the draft State report in March this year, we outlined the serious lack of progress on the 2019 to 2021 implementation framework. First, the implementation framework committed to the establishment of community neurorehabilitation teams in each community healthcare organisation, CHO. Over the three years of the framework and in the decade since the neurorehabilitation strategy was published, only two additional teams have been funded, and only partially. Both of these teams are in the east, in CHOs 6 and 7, despite the lack of any proper neurorehabilitation service provision across the rest of the country.

Second, Ireland needs a minimum of 288 specialist rehabilitation beds for its population. Fewer than 30 additional beds have been introduced in the ten years since the neurorehabilitation strategy was published. The redevelopment of the National Rehabilitation Hospital, while warmly welcome and much needed, did not introduce any additional rehabilitation beds. The HSE steering group responsible for the implementation of the strategy from 2019 to 2021 met only twice in 2020 and has not met at all in 2021. We are seeking the oversight and support of the committee to address the serious delays in the implementation of the strategy to ensure that Ireland is in a position to meet its obligations to people with a neurodisability in this country under the UNCRPD.

The Covid-19 pandemic has given added urgency to the implementation of the neurorehabilitation strategy. The national clinical programme for rehabilitation medicine has highlighted that a significant proportion of patients admitted to ICU with Covid-19 are anticipated to have significant complex impairments requiring specialist rehabilitation consultant and multidisciplinary team input and may require transfer to specialist rehabilitation units, while many with milder symptoms will need access to rehabilitation in the community.

We are requesting that the committee write to the Minister for Health, Deputy Donnelly, urging him to implement the neurorehabilitation strategy and consider a joint motion calling for full implementation of the strategy within the lifetime of this Government, as committed to within the current programme for Government.

I thank the committee and invite any questions.