About Us

The SCI-LINK project is an initiative for supporting Health Care Professionals to maintain an appropriate awareness of the needs of those individuals with spinal cord injuries (SCI) who are necessarily admitted outside of one of the 11 specialist Spinal Cord Injury Centres (SCICs) as part of their pre-transfer experience.

Spinal Cord Injury (SCI) is a low incidence, high impact condition, recognised as such by the NHS through the provision and funding of specialist Spinal Cord Injury Centres (SCICs), to provide a comprehensive acute, rehabilitation and continuing care service for patients with SCI. However, the NHS also recognises the real potential for people with acute SCI to be hospitalised outside of a SCIC for some part of their healthcare journey and the need to establish collaborative care guidelines with pre-transfer healthcare providers. The SCI Link-Worker scheme was developed in 1998 for these very reasons.

UNDERSTANDING THE SCI-LINK LOGO

The first destination point indicated on the right face is the general hospital as it is necessary that the new patient is taken to local A&E first. The short path from the edge of the globe to the local hospital represents the time and distance wherein their care and management is in the hands of the paramedic-rescue services.

The second destination point represents the specialist SCI Centre and the length of path between the two indicates both the fact that the SCI Centre is usually a supra-regional specialist facility necessarily positioned at a significant distance to the local hospital. But this distance between the two points also illustrates the time that the current complex injury patient can take to achieve ‘fitness to transfer’.

The convolutions in this part of the pathway indicate the potential for health complications and also the potential deviations in transition of care between A&E, Imaging Department, Critical Care Centre, Operating Theatre, Trauma Ward, even transfer to another hospital along the way.

The fact that the SCI Centre lies on the left face is indicative of the patient ‘crossing over’ from general to specialist care.

The pathway continues after the second destination point indicating that the journey continues for the SCI person after discharge into the community and introduces the role and contribution of GPs and Community Nurses.

At some stage the patient may re-enter this pathway again but as a person with a chronic, established SCI with a new health problem and facing readmission to his local hospital or SCI Centre once more.

WHAT IS A LINK–WORKER?

A Spinal Cord Injuries Link-Worker is defined as:

“A Health Care Professional with a declared interest in, and commitment to, the care and management of people with spinal cord lesions within their own area of practice and influence and in collaboration with their local SCIC”.

The Link-Worker represents a named contact, which their hospital trust and the SCIC can utilise, in order to develop a more collaborative pathway of care for people with SCI admitted to their hospital. As such, the SCI Link-Worker must have been enabled by their local management team and the SCIC, to access appropriate training to prepare them for the role. With the support of local management, each SCI Link-Worker should feel sufficiently empowered to take on the role and responsibilities identified for them.

LINK-WORKER ROLE EXPECTATIONS

(a)  To establish, within your own area of practice, an appropriate awareness of the need for close collaboration between admitting hospital and SCIC and the importance of early referral and transfer of new patients.

(b)  To review and inform current local protocols and care pathways in accordance with any new knowledge acquired through specific learning achievements and networking activities

(c)  To undertake appropriate awareness training ‘in-house’ as a means of disseminating new information acquired

(d)  To specifically demonstrate and teach the most appropriate moving, handling and transfer techniques.

(e)  To advise on the purchase or provision of appropriate aids and equipment to support the care and management of people with SCI within your area of practice.

The SCI-LINK scheme is supported by the Multidisciplinary Association of Spinal Cord Injury Professionals (MASCIP), the British Association of Spinal Cord Injury Specialists (BASCIS) and the Spinal Injuries Association (SIA). The SCI Link-Worker scheme provides local Service Managers with the opportunity for interested and motivated staff members to develop an appropriate appreciation of the needs of SCI patients and the ability to inform local care provision and decision-making through the development, interpretation and dissemination of appropriate evidence-based guidelines.

The value of Link-Workers is also recognised within the NSF for Long-Term Conditions (2005) as contributing to improved patient care and reducing the incidence of preventable complications.

The potential for SCI Link-Workers to influence the quality and impact of pre-transfer care is demonstrated through significantly improved referral and transfer times, reduced incidence or severity of pre-transfer complications and improved compliance with established, SCI-specific, pre-transfer care guidelines. Most significantly, is the finding that patients transferred from hospitals which support the SCI-LINK scheme are discharged from the specialist SCIC an average 40 days earlier.  A significant benefit for patients and the NHS overall!

An increasing number of Hospital Trusts have established inter-departmental ‘SCI Interest Groups’ to improve collaboration between wards and departments. As it is now a reality that it is not always appropriate to transfer every SCI person to a distant SCIC, particular mention should be made of the efforts by these groups to incorporate local Community Rehabilitation Teams and Centres to establish continuing community care support and provision for those patients being managed locally but with the continuing support of a local SCIC. In addition, the increasing survivability of longevity of people with SCI also means an increased potential for contact with community healthcare workers and the possibility readmission to a local hospital, providing new challenges for the scheme to address in the years ahead.

PATIENT PERCEPTIONS OF SCI-LINK

As SIA’s Executive Director I am very much aware of the value placed by SCI people on the SCI-Link project when they have benefited from contact with Link-Workers when being admitted to a DGH. A couple of years ago I was fortunate to meet with a number of nurses who were attending a training day at The Princess Royal Spinal Injuries Centre where they were learning about what would be expected of them as SCI Link-Workers. I was impressed with what I heard from them – there was a clear commitment by them to ensure that those SCI people being treated in non SCI specialist centres should receive appropriate quality care. I met three more SCI Link-Workers at the SIA Healthy Living Roadshow which we held in Norwich. They were clearly keen to learn more about SCI treatment and about the lives of SCI people outside of a hospital setting – to know them as a whole person, not just a patient.

Paul Smith meets Norwich SCI Link Workers at SIA's Anglia Healthy Living Roadshow

Paul Smith meets Norwich SCI Link Workers at SIA's Anglia Healthy Living Roadshow

SIA has been involved in promoting the SCI Link-Worker scheme since it was first conceived back in 1998 and the scheme was partly set up in response to the SIA Charter launched the year before. Prior to the scheme being established there was a clear need for an effective means of supporting SCI people hospitalised outside of a specialist centre and not just for those newly injured but also those who are admitted after initial rehabilitation as patients in hospitals other than their ‘spiritual’ home of a SCIC.

SIA has always believed that the best place for a newly injured person is in a SCIC and continues to so believe and that this should occur as soon as is humanly possible. However, the sad fact is that a great many traumatic SCI referrals have their transfer to a specialist SCIC delayed, some for a ‘significant’ period of time. The reasons for these delays are many and varied from fitness to travel, their critical care needs, or the fact that a bed in a specialist centre is not available.

The SIA Helpline receives many calls from the family and friends of newly injured people who are frantic to get their loved ones the treatment they need to maximise their potential for recovery. I remember all too well what my parents went through during the early stages of my treatment. I spent the first four weeks after my accident in an ICU at a DGH – for me it was not as bad as I had my pain to take my mind off the fact that my treatment had yet to begin. For my parents the time was agonising. It also seemed to me to be hard for the nurses who so desperately wanted to care for me the best that they could. They lacked the knowledge to meet my needs and also lacked good contact with those that had the knowledge.

It can be immensely reassuring for a SCI person who is admitted to a DGH to find a nurse that understands their needs. I like to think of myself as a fairly empowered individual who is capable of articulating my needs – however, I find entering a DGH a daunting experience. Simple things such as nurses knowing about the most appropriate moving, handling and transfer techniques or daily routines required to minimize the effects of my SCI such as bowel regimes or turning patterns are a big concern to me and to a vast number of SCI people. You would not believe the number of arguments I have had over being denied the opportunity to bring my commode in with me when admitted to a DGH because the hospital did not have one appropriate to my needs. I have met on more than one occasion SCI people who are too scared to seek help from a DGH because they feel their needs as a SCI person would not be met – one of these people thought cancer was a likely prognosis but still refused to seek help.

It makes sense that as SCI Link-Workers influence the quality and impact of pre-transfer care that there will be a reduced incidence or severity of pre-transfer complications. A great deal of interest has been shown in the service you provide. The SCI-LINK project now has over 100 Link Workers registered, representing 35 NHS Trusts and more than half of the patients admitted to the Sheffield SCIC are initially managed in hospitals with a Link-Worker in place. This speaks volumes and is a clear indicator of the success it is seen as by health care professionals.

It is wonderful that so many hospital management teams have seen the benefits of accessing appropriate training to prepare members of their staff for their role in supporting SCI people. I applaud them for doing so and would encourage those who have not already joined the scheme to do so.

Keep up the excellent work.

Paul Smith

SIA Executive Director