Health and personal care
It is important to understand the medical requirements of those who have spinal cord injuries, but it is equally crucial to recognise that each person will be affected individually and have unique physical, social, emotional and academic requirements dependent on their situation.
There are an estimated 50,000 people in the UK living with a spinal cord injury and each year approximately 2,500 people are newly injured.
At Back Up we understand that a spinal cord injury can be devastating, but we believe that it should not prevent anyone from getting the most out of life. Read on for advice about health and personal care after spinal cord injury.
Useful medical information for schools and staff
This section has been supported by materials provided by the Spinal Cord Injury Centre at the Royal National Orthopaedic Hospital, Stanmore.
Health considerations after spinal cord injury
Spinal cord injury in childhood can affect health over many decades. Most complications are now preventable. It will be helpful to the child if you ask what help, assistance or special attention they will need, obviously with sensitivity in aspects of personal care.
After spinal cord injury the nerve connection between the bladder and brain is lost and the young person may not feel when the bladder is full or be able to control passing urine. The bladder usually cannot empty as it did prior to the injury and artificial means are required for emptying. Emptying the bladder is often done by intermittent self-catheterisation. The technique can be performed by the young person themselves or the parents or a trained carer or health professional.
Some young people, especially with higher level injuries will have a permanent catheter in (usually a suprapubic catheter – which goes in above the pubic bone). Catheters are connected to a drainage bag which can be emptied every few hours.
After spinal cord injury the nerve connection between the bowel and brain is lost and the young person may not feel the urge to open their bowel or be able to control the anus. This means there is a risk of accidents, however most young people have a bowel routine that they do at a fixed time of day at home to empty the bowel and this usually prevents any further emptying during the day.
Because of reduced sensation and movement, after a spinal cord injury the body’s usual warnings of impending damage (pressure causing discomfort) will no longer be present and the skin and tissues are at risk of damage. Because movement is reduced, pressure continues. This can affect the blood supply to the skin and lead to pressure sores. Pressure sores can develop in a short period of time but may take many months to heal, which may mean long periods of bed rest and even surgery. To help prevent this young people will usually have to sit on specialist cushions and have regular pressure-relieving routines put in place such as sitting forward in their wheelchair for 2 minutes every hour, or using standing equipment to change position during the day.
Children with spinal cord injury above the T8 level (the neurological level of cord injury) may have difficulty regulating body temperature and are susceptible to overheating or hypothermia. Attention to environmental temperature is therefore important.
This is a condition unique to people with spinal cord injury when the injury is at or above the T6 level. Autonomic dysreflexia is a very raised blood pressure, usually with a headache and sometimes a skin rash. It can be considered as the body’s response to painful or potentially damaging conditions below the level of the spinal cord injury. Instead of the young person feeling pain or having specific complaints such as a tummy ache or a painful leg, they may get autonomic dysreflexia. Such things as a very full bladder, bowel problems and skin sores can cause the condition.
Although it is usually easily treated, it is an emergency situation and it is important that everybody involved with the young person knows what to do, which can include: establishing and resolving the cause (usually by checking the bladder and bowels are empty), adjusting the person’s posture so that they are sitting as upright as possible, loosen any tight clotheing or garments and, if necessary, ensuring administration of medication by a responsible person. Medication can be Nifedipine or GTN Spray. The school should always seek advice from the child’s medical professional on autonomic dysreflexia before the child returns to school.
Breathing function may be affected due to weakness of the chest and abdominal muscles. They may be more at risk if they have a cold or other infection. Some young people’s injuries are very high and all breathing muscles are paralysed; they will need a ventilator to breathe. They will have carers who are trained in the management of the ventilator and the associated equipment and any treatment required and have input from a physiotherapist.
Spasms are involuntary movements of muscles. A spasm may involve only one muscle or be more generalised and may be very short lived or last a long time. If spasms are troublesome then there are physical and medical treatments for them. Spasms can be useful, for example, for transferring in and out of the wheelchair and moving around in bed. Spasms can occasionally help people with incomplete injuries to stand up and take steps.
A standing programme is usually recommended for young people with spinal cord injuries. Usually they will have equipment such as a static or mobile frame, an upright stander or walker, or callipers. Weight bearing is considered to be important to provide a sustained stretch to the joints and soft tissues. Standing may also be beneficial to enable the young person to interact with others at eye level.
Depending on the level of the spinal cord injury the arms and hand function may be affected. The young person may require a programme to stretch the arms or hands, or may have splints to do this, or to help them use their hands.
Posture and growth
Following spinal cord injury the trunk muscles may be affected and this can lead to changes in the shape of the spine over time. It is important the young person maintains a good posture to try and prevent this (as well as to optimise function, skin care and appearance). This may require the use of a supportive system e.g. cushion, backrest, headrest, armrests and/or a brace.
Fitness and Diet
It is important that young people maintain an optimal level of fitness (see section on play below).
What young people eat and drink will also have a big impact on their general health, in the short and long term. In general, it will involve drinking adequate amounts of water and eating the standard recommended healthy diet, high in fruit and vegetables and low in fat.
Sexuality and sexual function
Sex and spinal cord injury is a complex issue but many people with a spinal cord injury do have full, loving relationships and schools should promote this message.
With any level of spinal cord injury, the person will most likely have some impact on their sexual function. Women might expect to have changes in sensations in the vaginal area, which might cause them to become either less sensitive or lose all sensitivity. Vaginal dryness caused by reduced lubrication may also be a problem. Men may have difficulty or an inability to get an erection, and may notice less sensation in the penis. They may also note difficulty with ejaculation. Because each spinal cord injury is different, the impact of injury on sexual function can also differ.
Other issues that might inhibit sexual function are spasticity which might cause cramping of the adductor muscles of the thighs, making them difficult to separate. Pain syndromes can make response unpredictable, making what once felt stimulating now feel painful. Bladder or bowel continence can cause embarrassment and anxiety, and an indwelling catheter may lessen sexual interest. In addition, weakness, fatigue, and breathing difficulties can also be barriers to sex as it used to be.
Spinal cord injury centres can assist teachers in getting relevant information required for young people with spinal cord injury. Section 3.3c also has lots of information and resources for teachers on supporting sex and relationships education for young people with physical impairments. Remember, sex with a spinal cord injury might be different than before one’s injury, but the important message is that many people with a spinal cord injury go on to have good long term relationships, get married and have children.
- Going Back to School – Supporting Young People Returning to School with Spinal Cord Injury: A Guide for Schools
- Department for Education: Special educational needs and disability (SEND)
- Special Needs Jungle – parent-led information, resources and informed opinion about children and young people 0-25
- Sky Badger – help for disabled children and their families
- Contact – support for families of disabled children
- Contact – Education and learning