People with a spinal cord injury
want to participate fully in society!
Research carried out in 2014 by Spinal Injuries Ireland showed that
76% of people with a spinal cord injury (SCI) are unemployed and
40% live on our below the poverty line. Although 84% were employed
at time of injury. Barriers include acute pain, bowel & bladder
management, mental health and fear of losing benefits.
76%
of people with a SCI
are unemployed
40%
of people with a SCI
live on or below the
poverty line
How can we work together to improve
quality of life and active participation?
1.
List SCI as a long term illness (cost neutral if people are back working)
A spinal cord injury is regarded by the World Health Organisation as one of the most devastating and life changing
injuries that a person can sustain. It is not listed as a long term illness by the HSE. Many with SCI are in receipt of
a medical card – all we are asking for is for SCI to be designated as a LTI, so that fear of loss of access to medical
care is not a barrier to those with SCI in seeking to rejoin the active work-force.
(The illnesses that are included are as follows: Intellectual Disability, Acute Leukaemia, Cerebral Palsy, Mental Illness (in a person under 16), Cystic Fibrosis, Multiple
Sclerosis, Diabetes Insipidus, Muscular Dystrophies, Diabetes Mellitus, Parkinson’s, Epilepsy, Phenylketonuria, Haemophilia, Spina Bifida, Hydrocephalus and
Conditions arising from the use of Thalidomide )
2.
By 2020 deliver on essential services
Our vision is for a pathway of support and care :
• A
country-wide community rehabilitation service,
with access to psychological, physio and
occupational therapies to promote best-wellbeing.
• A
n Irish-based rehabilitation service for adults and
children with SCI who are on ventilation treatment.
• H
ome care packages for all people with an SCI
so they can live as independently as possible
within their local community, as soon as their
conditions permits.
• Training
and support for carers, personal assistants,
health & social care professionals and advocates
so that all are equipped to provide integrated and
holistic specialist support for people with a spinal
cord injury.
3.
SII to provide relevant supports and education
so people with a spinal cord injury can participate
fully in society
Spinal Injuries Ireland (SII) is the only dedicated support
service for people living with spinal cord injury and their
families. SII provides a pathway of support from onset of
injury to inclusion in the local community through a range
of services from early days advice and information for
families, peer support, vocational advice, a community
connect team of 6 officers who provide active support
in the home following rehabilitation, counselling and
regional meet ups.
We acknowledge the state funding that SII receives
however in order to provide sustainable services SII
requires ongoing funding commitments.
What is a spinal cord injury?
According to the World Health Organisation, a spinal cord injury is acknowledged as one of the most devastating and
life changing injuries that a person can sustain. An injury to the spinal cord can be sustained either traumatically as
a result of an accident or sporting injury; or non-traumatically, as a result of illness, such as cancer. On average, one
person sustains a spinal cord injury every week. It can happen to anyone at any stage.
What is the impact on society?
There are almost 20,000 people nationwide living with the difficulties of a spinal cord injury. We estimate that for
every person with a SCI, there are an additional 10 people in their community of family and friends directly impacted.
When a life changing injury occurs the consequences are felt right through the local community, the injured person,
family, friends, colleagues.
Number of people with a spinal cord injury by constituency
Carlow-Kilkenny
57
Dun Laoghaire
18
Limerick City
30
Cavan-Monaghan
54
Dublin North West
48
Longford-Westmeath
52
Clare
53
Dublin Bay North
48
Louth
72
Cork South West
29
Dublin Central
68
Mayo
44
Cork North West
25
Dublin South Central
73
Meath East
30
Cork North Central
45
Dublin Bay South
53
Meath West
50
Cork South Central
46
Galway West
53
Offaly
30
Cork East
24
Galway East
37
Roscommon-Galway
23
Donegal
63
Kerry
56
Tipperary
70
Dublin Fingal
22
Kildare North
49
Waterford
37
Dublin West
28
Kildare South
30
Wexford
75
Dublin Mid West
54
Laois
34
Wicklow
76
Dublin South West
42
Sligo-Leitrim
41
Dublin Rathdown
28
Limerick
60
Total 1827
What does the World Health Organisation say?
Many of the consequences associated with spinal cord injury do not result from the condition itself, but from
inadequate medical care and rehabilitation services, and from barriers in the physical, social and policy environments.
Implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) requires action to
address these gaps and barriers.
Essential measures for improving the survival, health and participation of people with spinal cord
injury include the following.
• T
imely, appropriate pre-hospital management:
quick recognition of suspected spinal cord injury,
rapid evaluation and initiation of injury management,
including immobilization of the spine.
• A
cute care (including surgical intervention) appropriate
to the type and severity of injury, degree of instability,
presence of neural compression, and in accordance
with the wishes of the patient and their family.
• Access to ongoing health care, health education and
products (e.g. catheters) to reduce risk of secondary
conditions and improve quality of life.
• Access to skilled rehabilitation and mental health
services to maximize functioning, independence,
overall wellbeing and community integration.
Management of bladder and bowel function is
of primary importance.
• Access to appropriate assistive devices that can
enable people to perform everyday activities they
would not otherwise be able to undertake, reducing
functional limitations and dependency. Specialized
knowledge and skills among providers of medical
care and rehabilitation services.
^Sources: International Perspectives on spinal cord injury, World Health Organisation 2013 Understanding the needs and identifying barriers of people with
an SCI in Ireland (Collins 2014), Neurological Alliance of Ireland, “This is My Life” survey of people with an SCI (Spinal Injuries Ireland, April 2016).
For further information, please contact Fiona Bolger, CEO, Spinal Injuries Ireland
What people had to say...
I was sent home from hospital with a catheter and bag
without knowing what to do. I got repeated infections
while I waited for a bed in the NRH and received no
support from the hospital. I was shown how to manage
them once I got to the NRH – Louth
As soon as I started my job, my medical card was taken
from me – Dublin
My parents do all my bowel care – Sligo
You have to fight for everything – you receive no
appointments or services unless you keep fighting – Cork
My husband was in hospital and I had to stay with him
to do all his personal care as the staff were not trained
to do it – Donegal
I have been waiting 18 months for an
OT appointment – Clare
The nurse in A&E did not understand why I had cold legs.
I had to explain – Dublin