Presentation to MSc in Disability Studies, UCD. October 2015.

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Prevalence Estimates: Source: Strategic Review of Neurology and Neurophysiology Services National Hospitals office 2007 Unpublished Report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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