Ms Magdalen Rogers:

On behalf of the Neurological Alliance of Ireland, I thank the members of the committee for the opportunity to appear in front of them today. I commend the committee on providing our umbrella organisation, which represents more than 30 patient organisations, with the opportunity to highlight the impact of Covid-19 on access to services for people with neurological conditions and the effects of the pandemic on an already-under-resourced area within our health services. I will begin by paying tribute to all those who provided services and supports to people with neurological conditions and their families throughout the pandemic and continue to work to mitigate the impact on the care and treatment of people with neurological conditions. In particular, I want to acknowledge the often-taken-for-granted work of the voluntary sector in its response to the pandemic, as highlighted in the 2021 National Economic and Social Council, NESC, report from the dialogue forum with voluntary organisations and in the words of the HSE's chief executive officer, Mr. Paul Reid. Mr. Reid referred to the importance of building a new relationship with section 38 and section 39 organisations grounded on mutual trust and respect. It is vital that the sustainability issues that threatened the sector before the pandemic and were considerably heightened by the collapse of public fundraising be addressed to ensure these organisations remain a vibrant and essential part of our healthcare system. There is a need to have effective mechanisms of funding, administration and governance that properly recognise and integrate the specialism and expertise of voluntary organisations in the management of chronic disease within the health system.

In Ireland, as in countries throughout the developed world, Covid-19 has had a serious impact on access to care and treatment for people with neurological conditions due to the closure and curtailment of services and the redeployment of staff. However, in Ireland, this impact was exacerbated because neurology and neuro-rehabilitation services were already significantly overstretched and under-resourced before the pandemic. The Neurological Alliance of Ireland will shortly commence a project to examine in depth the hidden impact of Covid-19 on people with neurological conditions, including the impact of delayed or curtailed access to treatment and neuro-rehabilitation services. There is, however, a clear and immediate indication of the resourcing issues in neurology services evidenced through growing waiting lists and waiting times experienced by patients. The latest figures available from the National Treatment Purchase Fund, dating from February 2022, show there were 23,815 people on waiting lists for a neurology appointment. This is by contrast with 13,218 on the waiting list in 2015. The recently published waiting list action plan commits to a target of ensuring that no one is waiting more than 18 months for an initial outpatient department appointment. In January 2022, there were 7,587 patients waiting for more than 18 months. This is an increase from the 4,871 waiters in January 2019, which was before the pandemic. Reducing this number and actively managing the ever-increasing waiting lists for access to neurology services cannot be achieved without additional investment in resources, especially in the context of Covid-19 backlogs.

The Neurological Alliance of Ireland carried out a nationwide audit of neurology resourcing in November 2020. One of the stark findings that emerged from this audit was the critical shortage of nurse specialists across neurology services. According to the model of care for neurology services in Ireland, we have an overall shortfall of 100 nurse specialists across neurology services. What does this mean in practice for the more than 800,000 Irish people living with neurological conditions represented by the member organisations of the Neurological Alliance of Ireland? It means that four fifths of Irish people living with Parkinson's disease, for example, do not have access to a nurse specialist, while there is an absence of nurse specialists in adult neurology services for complex neurological conditions such as muscular dystrophy and Huntington's disease. This led the alliance to launch its Patients Deserve Better campaign to tackle the shortage of 100 nurse specialists within neurology services. I pay tribute to the committee members in that I recognise their support for this campaign in their local constituencies since it was launched in October last year. More than 90 parliamentary questions have been raised on this campaign, and it has been raised on almost 20 occasions in both the Dáil and Seanad, including in the form of topical issues and commencement matters.

Investing in nurse specialists in neurology services is critical to reducing waiting lists and improving patient care. We have clear evidence within our health system of the role of nurse specialists in waiting-list reduction and the prevention of hospital admission. The final evaluation report on the benefit of advanced nurse practitioners, launched by the Minister for Health, Deputy Donnelly, in May 2021, notes that an average of 4.3 patients per advanced nurse practitioner are avoiding hospital admission weekly and points to an average reduction of 3.9 patients per week from specialist waiting lists.

The neurology clinical programme will make proposals for the 2022 Estimates process that will recommend the recruitment of significant additional numbers of nurse specialists in neurology services, as well as other clinical staff, as part of a five-year plan to implement the model of care for neurology services. This will require year-on-year investment in what could be up to 20 specialist nurses each year to tackle the shortage of specialist nurses in neurology incrementally. We request that the committee make urgent representations to the Minister for Health in support of our key ask, which is to increase staffing numbers significantly within neurology services, particularly in specialist nursing, in line with the model of care for neurology and within the lifetime of this Administration.

I sincerely thank Professor Hardiman for supporting the Neurological Alliance of Ireland here today. We welcome any questions from the committee.