Below is a summary of what was presented to Finian McGrath TD, Minister of State with responsibility for Disabilities:
Spinal Injuries Ireland (SII) is the only dedicated support agency for people who have become lifelong disabled through a spinal cord injury (SCI). An injury to the spinal cord can be sustained either traumatically in sport or as a result of an accident or fall, or non-traumatically, as a result of illness, such as cancer. On average, one person sustains a traumatic spinal cord injury every week and it can happen to anyone at any stage.
Over a recent period during 2016, there was a sudden & unexpected surge in the number of new traumatic spinal cord injured patients, particularly those with cervical level injuries, putting limited acute & rehabilitation services under considerable pressure.
In Ireland there are 1800 people living with a SCI, 76% of whom are unemployed and 40% live on or below the poverty line (Collins 2014). When a life changing injury occurs the consequences are felt right through the local community, the injured person, family, friends, and colleagues. SII estimates that there are 20,000 people impacted by a SCI nationally.
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.
In 2014 SII published the largest piece of qualitative research on what it is like to live with a SCI which involved face to face interviews with 25% of people in Ireland living with a SCI. Following this SII has carried out a number of surveys most recently in April 2016 to establish the issues with medical care for people with a SCI. In May, Spinal Injuries Ireland held 10 town hall meetings nationwide to provide a platform for this hidden section of society to voice their stress, frustration & upset at how they are being treated.
“Of the many forms of disability which can beset mankind, a severe injury or disease of the spinal cord undoubtedly constitutes one of the most devastating calamities in human life”
–Sir Ludwig Guttman, founder of the Paralympic Games
What are the issues?
- There are serious delays in admission to the National acute hospital (Mater, Dublin). There are patients waiting in regional hospitals for a bed in the Mater or some may be waiting at home causing stress to the patient and family members.
- Serious delays for some newly injured patients in accessing rehabilitation – in some cases, patients are transferred back to a regional hospital or home to wait for a bed at the NRH. 80% of admissions to the NRH Spinal Cord System of Care (SCSC) Programme are from acute hospitals. The waiting time in 2012 was 45 days. The average waiting time for patients discharged to date in 2016 is 70 days with huge additional costs in acute care.
‘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
- There are no rehab facilities in Ireland for those who need to be ventilated. These high level injuries often experience long waits to receive rehabilitation in the UK or Northern Ireland. Once rehab is completed, patients are often re-admitted to the acute hospital or to a regional hospital whilst waiting on care packages;
‘I promised my son that I would have him home by the time we reached the third anniversary of his accident. I let him down. It looks like it is happening now but I do not want any family to have to go through the pain and stress that we have endured over the last 3 years. I know I will have to keep fighting for him.’ Tipperary
- Insufficient budget for homecare packages particularly for complex cases. Some young people with an SCI are living in ICU in regional hospitals or nursing homes as care packages are not available to them to live independently. The cost of high lesion SCI care packages are in the region of €100,000 + and the typical response of local Disability Managers is that this level of funding is not possible at local level. In 2016 to date over 500 bed days have been lost in the NRH SCSC Programme at a cost of €400,000.
‘My parents do all my bowel care’ Sligo
- 60% of people do not feel that hospital and medical staff have enough knowledge and experience of managing someone with an SCI. Poor SCI education can cause misdiagnosis or create additional medical issues. Particularly in relation to bowel and management care which is essential for people with SCI. 40% of people are not comfortable with their bowel and bladder management at regional and community level.
‘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
- Shortage and post code lottery of community services such as PA hours, physiotherapy, occupational therapy and counselling.
54% of those with an SCI do not feel they receive adequate counselling in the community
48% do not feel they receive adequate physiotherapy.
‘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
- Limited education programmes for PA’s & carers.
58% of people with an SCI feel that their Personal Assistants/Carers do not have sufficient training to deal with their needs;
It is estimated that it could cost €250 million per annum to manage pressure ulcers across all care settings in Ireland (Gethin et al.2005). The NHS estimates that 25% of pressure sore cost is due to SCI. If the correct care pathway was in place the cost of pressure ulcer management would reduce and the investment in the pathway would be self financed.
Examples of best practice as outlined by World Health Organisation
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.
- 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.
- Increased and ring fenced budget for homecare packages for complex cases to clear the pathway of care and free up beds at acute and rehabilitation stages. An additional €2m cumulatively annually allocated centrally to the Spinal Cord programme would clear the pathway and decrease waiting times.
- Investment to address staff shortages and training for healthcare professionals in both inpatient and community settings.
- Over 500 people with a spinal cord injury attended the ‘This is my life’ roadshow nationwide in May 2016. There was one strong and consistent message. ‘Tell us what is happening’. There would be an acknowledgement by families that there may be delays in the health service but it is the ‘not knowing or not being told what is happening’ that causes the most stress and anxiety to the whole family.
One quick fix would be to put a central strategic approach to case management: Grant medical cards based on medical need, not income.
Because of the current delays in the pathway of care, Spinal Injuries Ireland is providing supports to people and families who are awaiting treatment at acute and rehabilitation stages. This has caused unprecedented pressure on the Community Team of 6 (3 fulltime & 3 part time). In addition, Service users often describe being discharged from the NRH is like falling from a cliff as there are little state support services in the community and it is only with the support of Spinal Injuries Ireland that they can begin the difficult journey back to inclusion in their local communities.
Spinal Injuries Ireland offers a person centred active support service to ensure that service users are linked in to all the correct services and begin to re-engage socially and vocationally.
Spinal Injuries Ireland has a current deficit of €250,000 in providing these services. Funding is only received from Dublin South East/Wicklow (CHO Area 6) and Dublin North East (CHO Area 9) although a nationwide service is provided.