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Prevalence Estimates: Source: Strategic Review of Neurology and Neurophysiology Services National Hospitals office 2007 Unpublished Report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 4.235
million
CSO Population Projection
2011
4.488 m
2016
4.811 m
2021
5.070 m
Persons living with the condition 17% 725,987 (17%) 762,960 824,743 869,143
Help with daily activities 0.6% 25,410 (0.6%) 26,928 28,866 30,420
Disabled by condition 2% 84,699 (2%) 89,760 96,220 101,400
Has condition but able to manage life
on daily basis 14.5% 615,879 (14.5%) 652,683 699,657 737,323
Number of newly diagnosed each
year 1% 43,559 (1%) 44,880 48,110 50,700
People caring for person with
condition 1.5% 61,709 (1.5%) 66,038 70,790 74,601
Social & Economic Factors
The total cost of disorders of the brain was estimated at €798 billion in Europe in 2010. 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 DementiasVery little specialist care, especially following diagnosis/acute management stageShortage of neurospecialisms: neurology neuropsychiatry, neuropsychology, neurorehabilitation Significant lack of policy/research in this areaLack 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 servicesQOL, 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 needsCommissioning clear about whats required Resources & MethodologyServices 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 www.nai.ie www.neuronetwork.ie
Thank you for listening
Submissions of Interest : 2015 nai.ie/go/resources
NAI response to the consultation on implementation plan for NDS 2016-2019
NAI response to call for submissions on Disability Act and NDS
List of NAI member organisations Alzheimer Society of Ireland Post Polio Support Group Acquired Brain Injury Ireland Syringomyelia Support Group of Ireland Aphasia Ireland Spinal Injuries Ireland Aware Spina Bifida Hydrocephalus Ireland Bloomfield Health Services The Rehab Group Cheshire Ireland Chronic Pain Ireland Associate Members Dystonia Ireland Brain Tumour Ireland Enable Ireland PSPA Ireland Epilepsy Ireland Irish Association of Speech & Language Therapists Friedrich’s Ataxia Association of Ireland Irish Institute of Clinical Neuroscience Headway Myaware 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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