Presentation to MSc in Disability Studies, UCD. October 2015

What this presentation will cover Neurological Conditions: An Overview Neurological Care in Ireland Policy in the area of neurological conditions in Ireland Disability policy and people with neurological conditions The work of the Neurological Alliance of Ireland

“There is ample evidence that pinpoints neurological disorders as one of the greatest threats to public health” (World Health Organisation (WHO), 2006). >700,000 people in Ireland with a Neurological Condition; that equates to 16% of the population or 1 in every 6 people.

Irish Prevalence Estimates: Source: Strategic Review of Neurology and Neurophysiology Services National Hospitals office 2007 Unpublished Report UK Neuro- Numbers Report 2006 CENSUS million CSO Population Projection m m m Persons living with the condition17%725,987 (17%)762,960824,743869,143 Help with daily activities0.6%25,410 (0.6%)26,92828,86630,420 Disabled by condition2%84,699 (2%)89,76096,220101,400 Has condition but able to manage life on daily basis14.5%615,879 (14.5%)652,683699,657737,323 Number of newly diagnosed each year1%43,559 (1%)44,88048,11050,700 People caring for person with condition1.5%61,709 (1.5%)66,03870,79074,601

Social & Economic Factors The total cost of disorders of the brain was estimated at €798 billion in Europe in Direct costs constituted the majority of costs (60%) whereas the remaining 40% were indirect costs associated with patient’s production loses. Unemployment and retirement due to illness are prevalent among those with neurological conditions, estimated at up to 58% in those with MS (Julian et al 2008).

Neurological Conditions ICD: over 600 diseases of the nervous system 15 subcategories Congenital (46) & Acquired Most prevalent: Migraine,Dementia, Stroke & ABI, Epilepsy, MS, Parkinson’s Disease WHO report 2006 Issue of what has come under the term neurological condition in Ireland in terms of policy development/service provision

Neurological Care in Ireland Some neurological conditions do not typically come under the care of a neurologist in Ireland e.g. ABI, Alzheimer’s Disease and other Dementias Very little specialist care, especially following diagnosis/acute management stage Shortage of neurospecialisms: neurology neuropsychiatry, neuropsychology, neurorehabilitation Significant lack of policy/research in this area Lack of clear planning/direction & prioritisation of neurological conditions in policy development and service provision

Typical Stages of Care Diagnosis/onset (issues waiting times, access to specialist care Rehabilitation (Levels 1-3) Long Term Care/Management Palliative Care Complex Pathways: relapsing/remitting, exacerbation of symptoms, progressive conditions,

Challenges within current systems Although neurological conditions are common, life- changing and disabling, they have not received the same high profile or resourcing in Ireland as other less prevalent or less disabling conditions. Addressing the needs of patients requires a number of changes to the way the service is planned and delivered. This includes changes to current structures and systems to enable the development of a flexible, accessible, multidisciplinary service that is well resourced and ensures that all aspects of the service work together to achieve best patient outcomes.

Challenges in responding to need Complex conditions Multiple health professionals involved Services have to be responsive to sudden onset and progressive conditions Wide range of needs requiring support from mental health, palliative care, disability services, older persons services Pattern of needs changes in response to condition/recovery/life events

Policy & neurological care IRL Specific reports into neurology & neurosurgery services 2003 & 2006 Strategic Review of Neurology & Neurophysiology Services 2007 (unpublished) National Neurorehabilitation Strategy National clinical programmes in neurology, epilepsy and rehab medicine

Gaps in Policy & Research Policy Framework for long term care/management Addressing needs of specific groups: mental health needs, palliative care, children with neurological conditions Framework for prevention/self management Research Audit/mapping of existing services QOL, patient experience and outcomes Prevalence studies ie planning for the delivery of care without accurate prevalence data on current and future need, including regional variations.

Disability Policy & Legislation Neurological Conditions (only a sample!!) National Disability Strategy Value for Money Congregated Settings New Directions Progressing services for Children & Young People Assisted Decision Making Legislation EPSEN 2004 Citizens Information Act 2007

Opportunities & Challenges: Disability Services Reform programme Opportunities Person centred model Commissioning of services Information infrastructure Skill Mix Models of good practice and demonstration projects Quality Focus Challenges Recognition of need to maintain and develop specialist services Assessment of complex needs Commissioning clear about whats required Resources & Methodology Services and responses are evidence based

Neurological Alliance of Ireland Advocacy Informing and Influencing Policy Development Awareness Raising Promoting Research Providing a network for member organisations Thank you for listening

Submissions of Interest : 2015 nai.ie/go/resources NAI response to the consultation on implementation plan for NDS NAI response to the consultation on implementation plan for NDS NAI response to call for submissions on Disability Act and NDS NAI response to call for submissions on Disability Act and NDS

List of NAI member organisations Alzheimer Society of IrelandPost Polio Support Group Acquired Brain Injury IrelandSyringomyelia Support Group of Ireland Aphasia IrelandSpinal Injuries Ireland AwareSpina Bifida Hydrocephalus Ireland Bloomfield Health ServicesThe Rehab Group Cheshire Ireland Chronic Pain IrelandAssociate Members Dystonia IrelandBrain Tumour Ireland Enable IrelandPSPA Ireland Epilepsy IrelandIrish Association of Speech & Language Therapists Friedrich’s Ataxia Association of IrelandIrish Institute of Clinical Neuroscience HeadwayMyaware Huntington’s Disease Association of Ireland Irish Heart Foundation Irish Hospice Foundation Irish Motor Neurone Disease Association Migraine Association of Ireland Move4Parkinsons Multiple Sclerosis Society of Ireland Muscular Dystrophy Ireland Neurofibromatosis Association of Ireland North West MS Therapy Centre Parkinson’s Association of Ireland

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