ESCIF Policy Statement on the treatment, rehabilitation and life-long care of persons with spinal cord injuries (SCI)
The following Policy Statement was unanimously approved and accepted by the ESCIF Assembly of Delegates on 26 April 2008 in Umag, Croatia.
1. Establishment of regional and/or national spinal cord registers in all European countries
At present very few countries in Europe have regional and/or national registers of spinal cord injuries; even in those that do, access to the information recorded is often restricted. Furthermore, direct comparisons of national statistics are made impossible by a lack of uniformity in the definitions used and the recording practices employed.
The member organisations of ESCIF agree that regional and/or national registers should be established in all European countries. The primary purposes of registration are as follows:
In order to facilitate the collation and comparison of the regional and national data, it is essential that the recording practices used are uniform and transparent. While, for ethical reasons, the individual should retain the right to demand that his/her medical journal should be confidential, the statistical information recorded in the regional and national registers should be accessible.
2. Centralisation of the treatment, rehabilitation and life-long care of persons with spinal cord injuries
While the incidence of spinal cord injury (both traumatic and non-traumatic) is relatively low, the physical, medical, psychological, social and financial consequences of such injuries are highly complex and, potentially, devastating for the injured person and his/her family. Thus, we find ourselves faced with a classic health sector dilemma; a small group of people with a diagnosis that demands the highly-specialised knowledge and experience of a wide range of medical, clinical and counselling personnel over a long period of time.
ESCIF and its members will work to promote the centralisation of the treatment, rehabilitation and life-long care of persons with SCI and the creation of dedicated centres of excellence in both the treatment, rehabilitation and care of spinal cord injury and of research in this field. The centres must have the ability to manage all requirements of persons with SCI through direct access to the other medical and clinical specialisations upon which this patient group relies - for example, neurosurgery, neurology, orthopaedic surgery, urology, gastroenterology, plastic surgery, gynaecology and obstetrics, fertility, sexology, respiration, gerontology, physiotherapy and occupational therapy. The services offered by the centres will be available to all paraplegics and quadriplegics/tetraplegics and the relevant national authorities should ensure that all persons who have sustained a spinal cord injury are referred to a specialised spinal cord injury centre.
Centralisation provides many benefits including the opportunity to:
3. Peer-counselling and peer support services
In a recent study carried out by ESCIF1 there was general consensus that newly-injured persons with SCI undergoing rehabilitation can learn a great deal from meeting people already living with a spinal cord injury; this includes everything from "tips" that can be used in everyday activities, through the more sensitive issues of sexuality and identity, to the overall problem of "coming to terms" with what has happened and how to move on.
It is, however, not enough to rely on chance meetings or ad hoc voluntary activities; in order to gain the maximum benefit from this invaluable source of information and experience, a comprehensive peer-counselling/peer support service must be established at the spinal cord centres or rehabilitation centres.
ESCIF and its member organisations have experienced that peer-counselling makes a significant and positive contribution to the rehabilitation of people with spinal cord injuries and will, therefore, work to establish peer-counselling and peer support services and activities in all ESCIF member countries. In order to achieve the best results it is essential that these services receive regular and sufficient funding from the relevant authorities.
The role of the peer-counsellor is multi-faceted:
1 Acute care and primary rehabilitation in ESCIF member countries 2007.
4. Proactive support for the families of persons with spinal cord injuries
The consequences of a spinal cord injury affect not only the injured person but also the families, friends and even colleagues of that person. In the study mentioned above, it was shown that most of the member organisations are acutely aware of the problems faced by partners and families - problems that have been largely ignored by the national healthcare and social systems. Many of the member organisations are already working to rectify this situation.
ESCIF and its member organisations agree that proactive support - counselling, information, advice and education - is vital for the partners and families of persons who have sustained a spinal cord injury. In order to be able to offer the best and most qualified support, it is essential that medical, clinical, therapy and counselling personnel collaborate closely with the national SCI organisations. The organisations should receive financial support from the relevant authorities (government, health or social sector etc.) to fund their contribution to these services and activities.
When devising a proactive family support system, the following points should be remembered: