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Workshop Report. Question 1: What are the Problems?. Centralised Service No neurologists in mid west, northwest Limited paediatric neurology service No neurosurgery outside Dublin and Cork No Neurorehabilitation outside Dublin No Clinical professionals in some areas (eg SLT)
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Question 1: What are the Problems? • Centralised Service • No neurologists in mid west, northwest • Limited paediatric neurology service • No neurosurgery outside Dublin and Cork • No Neurorehabilitation outside Dublin • No Clinical professionals in some areas (eg SLT) • No neurophysiology / neuropsychology • Imaging – no free MRI • Transport • cost and accessibility
Problems • Continuity of care: • Poor coordination of services • Poor access to centres of excellence • long waiting periods, • delays in diagnosis • Misdiagnoses No standardisation / accreditation of services • Disabled drivers Primary certificate: Criteria too stringent
What are the Solutions • Appoint more neurologists and paediatric neurologists as per Comhairle report • Funding of multidisciplinary teams including specialist nurses, neuropsychologists etc • Appoint liaison coordinator between voluntary and professional groups: Development of concept of Neurology family support worker • Provide Core funding on a multi-annual budgeting basis • Education of other professionals • Provision of technology for primary care • Telemedicine technology
Solutions 2 • Better utilisation of existing services: • Improve communications between different service providers • Development of Neurology Unit with links to disability services (Clinical Directorates?) • Improvement in transport and disability access • Co-ordination of hospital visits (“One-stop shops?”,multidisciplinary clinics • Involvement of voluntary sector in MD clinics • Empowering patients about their entitlements • Abolish waiting lists
Solutions 3 • Removal of age-specific barriers: Examine models of international best practice (AAN practice parameters?) Development of Neurological databases (Problems with data protection?) : Legislation needs to be changed
Obstacles to Development of Better Services? • Political will • Fragmentation of message • Poor understand of community services • Funding and distribution of existing funds • No funding for CME for health care professionals • Absence of awareness among practitioners • Stigma of neurological conditions • Lack of recognition of “hidden” effects of neurological disease • Misdiagnosis • Lack of leadership
Obstacles • Who to influence? Politicians? Health Board Executive? Ombudsman?
How can we influence the National Agenda? • Unification of aims • Educational forum • CME points for health care professionals • Regionalisation • Rights based aspect of Health • Lobbying • Personal • By voluntary sector • By coordinated campaigns: Similar points by large groups of stakeholders/ users
Influencing the National Agenda • Information – Website.. • Integration of voluntary groups • Achievable task for Current Minister • Develop strong regional network of allied organisations (Regional NAI) • Build Relationship between NAI and IICN
Deliverables • Set and achieve targets for development in next 6 months • Develop relationships between regional advocacy groups: Build Regional NAI • Obtain commitment to fund new neurology posts in Southeast, Limerick and Sligo • Change legislation re Data Protection to permit development of registers of chronic diseases that can be used for future health planning and audit