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)– 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– MisdiagnosesNo 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