Future care and guidance

These pages are not intended to cover everything that every spinal cord injuries survivor might need to know or do.

It should be used more as a reference for the minimum standard of routine follow-up a healthy spinal cord-injured person should receive.

There are a lot of technical terms used – if you are not sure what any of them mean please feel free to contact the centre on the number listed at the bottom of this document.

• What should you as the person with SCI do?

  On a daily basis we would recommend that every person self-checks their skin.

  Those with more limited mobility might want to ask for help from care staff but remember this is only to enable you to see your skin – the responsibility for making decisions about your skin should rest with you.

  Every year we would recommend you ask your GP, district nurse or care staff to help you check your weight and blood pressure, and if your injury is above T8 arrange for a flu vaccination.

  Most GP surgeries offer healthy man and healthy woman review clinics for everyone over age 40 – make sure you ask about these and sign up for them. Even if you are younger, a routine GP review is no bad thing.

• What things need to be done at least every two to three years by the SCI specialist team?

  For all people with spinal cord injury who do not require ventilatory support:

  • Assessment done every 12-18 months (for the first 3-5 years after injury) or until health is established
  • Full history and physical review with spinal doctor
  • Access, equipment and posture review
  • Assess limb range of motion, contractures, and functional assessment.
  • Full skin evaluation
  • Motor and sensory testing
  • Review changes in life and social situation, including integration into society, occupation, coping, adjustment and life satisfaction

   

  Assessment made after 12-18 months (for the first three years) and after any major change in urologic management:

  • Urological assessment; upper and lower urinary tracts
• For all people with spinal cord injury who require respiratory support (ventilator dependent and/or using phrenic pacer systems)

  Review every 12 months; first review at NWRSIC, Southport then either at Centre or home, dependent on individual circumstances. In addition to the overall review received by people who are not ventilator dependent;

  For adults (aged 16+):

  • Clinical review of respiratory status/frequency of infection from patient and carers.
  • Respiratory examination; to include measures of ventilation (e.g. spirometry, arterial or non-invasive blood gases)
  • Laboratory examination of blood samples or microbiology (as indicated).
  • Chest X ray (as indicated)
  • Review of tracheostomy and tubes or NIV interfaces
  • Confirmation of ventilator settings
  • Confirmation of service and maintenance schedule
  • Check on age and condition of equipment
  • Assessment of ventilator mounting on wheelchair

   

  For children (up to age 16) and in addition to the above:

  • Annual height and weight charting
  • Review of tracheostomy tube size
  • Radiographic visualisation of tracheal dimensions (as indicated)
  • Preparation for change to adult breathing hoses (as indicated)

   

  All phrenic pacer users (children and adults):

  • Clinical review or respiratory status/frequency of infection from patient and carers
  • Respiratory examination; to include measures of ventilation (e.g. spirometry, arterial or non-invasive blood gases)
  • Laboratory examination of blood samples or microbiology (as indicated)
  • Chest X ray (as indicated)
  • Confirmation of service and maintenance schedule
  • Check on age and condition of equipment
  • Review of threshold settings and resultant volumes (every second year)
• What things need to be done every five years after injury by the SCI specialist team?
  • Full history and physical review with physician
  • Access, equipment and posture review
  • Assess range of motion, contractures, and functional status
  • Full skin evaluation
  • Motor and sensory testing
  • Review changes in life and social situation, including integration, occupation, coping, adjustment and life satisfaction
  • Urological assessment; upper and lower urinary tracts
• What things do you as the person with SCI need to do every 10 years?

  If your injury is T8 or higher, arrange with your GP to have a pneumococcal pneumonia vaccination.

• Cancelling or failing to attend appointments

  Please remember there are more than 1,500 people requiring follow-up by the centre and scheduling an appointment for everyone takes considerable time and organisation.

  If you fail to attend for any appointment, cancel at short notice or cancel without a reasonable cause, you are delaying not only your own review, but also the care of other people.

  Each failure to attend will be closely reviewed and those who repeatedly miss or alter appointments will have their need for ongoing care by the centre reviewed.

  In extreme cases individuals will be removed from the patient list and asked to make arrangements for their care at another spinal injuries centre.

  We hope these guidelines support you in understanding how you might maintain an active and healthy life after your spinal cord injury.

  If you would like further advice or support, please contact the case management department on 01704 704333.

   

  Adapted From: Lammertse D, Maintaining Health Long-Term with Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation: Aging with Spinal Cord Injury. Kemp B., Issue Ed, David Apple, Ed. Volume 6(5), Winter, 2001 pp. 15-17.