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.

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.

How can we work together to improve quality of life and active participation?

of people with a SCI are unemployed

of people with a SCI live on or below the poverty line

40%

76%

By 2020 deliver on essential services SII to provide relevant supports and education so people with a spinal cord injury can participate fully in society

2. 3.

List SCI as a long term illness (cost neutral if people are back working)1. 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 )

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.

• An Irish-based rehabilitation service for adults and children with SCI who are on ventilation treatment.

• Home 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.

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.

^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

Essential measures for improving the survival, health and participation of people with spinal cord injury include the following.

• Timely, appropriate pre-hospital management: quick recognition of suspected spinal cord injury, rapid evaluation and initiation of injury management, including immobilization of the spine.

• Acute 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.

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

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

You have to fight for everything – you receive no appointments or services unless you keep fighting – Cork

I have been waiting 18 months for an OT appointment – Clare

As soon as I started my job, my medical card was taken from me – Dublin

My parents do all my bowel care – Sligo

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

The nurse in A&E did not understand why I had cold legs. I had to explain – Dublin

What people had to say...