Ms Magdalen Rogers:

I thank the Chairman and members for including the issue of services for people with neurological conditions in their work plan and for providing the opportunity to speak on this theme this morning. I would like to introduce Ms Edina O'Driscoll, project manager for the neurorehabilitation demonstrator project. She is here in a voluntary capacity at our invitation in order to address any queries on this project which I will mention in the course of my statement.

Over 800,000 Irish people are living with neurological conditions, ranging from common conditions such as migraine, dementia and epilepsy to rare neurological disease, with approximately 40,000 additional people diagnosed each year. The Neurological Alliance of Ireland, NAI, is the national advocacy group for neurological care, representing over 30 patient organisations. We work closely with the Disability Federation of Ireland in promoting recognition of the need for community supports for people living with neurological conditions and the vital role played by voluntary organisations, including MS Ireland, in providing these services.

I wish to briefly highlight an issue which I do not have sufficient time to deal with in detail but which continues to impact significantly on people with neurological conditions, including multiple sclerosis, MS. I refer to access to medicines. The NAI supports the call by the Medical Research Charities Group and the Irish Platform for Patient Organisations, Science and Industry for the development and implementation of a national strategy on access to new and innovative medicines. The remainder of my statement will focus on the specific challenges in accessing neurology and neurorehabilitation services and call for investment in a series of specific projects which the NAI believes could make a significantly positive impact.

Neurorehabilitation services are critical to support recovery and prevent disability for people with neurological conditions. The ongoing lack of access to specialist rehabilitation continues to have a devastating impact on individuals and their families, resulting in unnecessary disability and impinging on the precious potential for recovery. Ireland has less than half of the specialist inpatient beds needed for its population and community-based services are totally underdeveloped, with only three community healthcare organisations, CHOs, having dedicated, but still only partially staffed, community neurorehabilitation teams.

A three-year implementation framework for the 2011 national policy and strategy for neurorehabilitation services was finally published by the HSE in February. While implementation of this framework is included as a key action within the Sláintecare implementation plan, this will be impossible without dedicated funding. A critical starting point is the need for investment in the neurorehabilitation demonstrator project. This project is an innovative collaboration between acute hospitals, the National Rehabilitation Hospital, the Royal Hospital Donnybrook, Peamount Healthcare, local voluntary providers and primary care to develop a managed clinical rehabilitation network which will improve access to specialist neurorehabilitation for people in CHO areas 6 and 7. This is not just about introducing a new service, this pilot project is fully in line with the aims of Sláintecare to provide an integrated approach to the management of chronic neurological conditions, reducing length of stay in acute hospitals, saving bed days and most importantly, ensuring that people receive the right care in the right place when they need it.

I want to move on to a series of proposed projects to address the challenges in neurology services. The neurology clinical programme recognises that over 20,000 patients are awaiting neurological evaluation, of whom at least 30% suffer from headache. Headache represents the second most frequent condition presenting to acute medical assessment units. In response to this, and in collaboration with the Irish Pharmacy Union and the Migraine Association of Ireland, the neurology programme has developed a new pathway of care that will expedite headache management to a community-focused model in an innovative, quality driven and cost-effective way in line with the aims of Sláintecare. The neurology programme also recognises that many neurological diseases are rare, requiring national centres of expertise. Therefore, an innovative, agile and sustainable management plan has been developed using motor neurone disease as a model, that integrates care across the hospital community and capitalises on the expertise of the voluntary sector to provide high-quality, evidence-based, streamlined care for patients from diagnosis to end of life.

Finally, the neurology programme recognises the importance of providing evidence-based, disease-modifying treatments in a cost-effective manner for neurological disease. The programme is developing an evidence-based treatment pathway for multiple sclerosis that can be replicated for other neurological diseases for which new, highly effective but costly treatments are anticipated.

The NAI is calling for investment in the initiatives outlined as a key opportunity to begin to address the huge challenges faced by people living with neurological conditions. All the proposals are fully costed and ready for implementation. Detailed descriptions have already been circulated to the committee or are available on request. The NAI wishes to stress that a commitment to ongoing investment in neurology and neurorehabilitation services needs to be a key part of any future programme for Government. We look forward to working with the committee in shaping future policy.