Children and adolescents with a spinal cord injury
The Trust has a designated service for managing spinal cord injury in children and adolescents. The service includes acute management of traumatic spinal injury including management of the spinal column, the medical management and specialist multidisciplinary rehabilitation for spinal cord injury.
For healthcare professionals:
- Acute management of traumatic spinal cord Injury
- Rehabilitation for new traumatic and non-traumatic spinal cord injury
- Acute management and rehabilitation for ventilator assisted children and adolescents
- Long term management for children and young people with spinal cord
- Outpatient assessment and management
- Additional in patient episodes as required
- Spinal Cord Injury Centre (nursing station) 020 8909 5583/5588
- Spinal Cord Injury Centre Co-ordinator 020 3947 0100 bleep 755
What is a spinal cord injury?
For further information visit:
Who's who in your child's treatment?
There will be many doctors involved in your child's care. The spinal surgical team may be involved early in deciding whether any surgical treatment is required to stabilise the spinal bones. The spinal cord injury doctor will usually then be responsible for your child's overall care. They will work closely with a paediatrician.
Child and adolescent mental health service
A consultant child and adolescent psychiatrist, or senior child psychologist works within the multi-disciplinary team and will see you and your child during any admission and outpatient follow up. Child psychiatrists and clinical psychologists can positively assist a spinal cord injured child or teenager, and their family, to achieve the best psychological, physical and social outcomes.
- Child psychiatrists are medically qualified doctors who specialise in understanding and working with children and young people who have emotional, behavioural and mental-health problems. They will also work with close family members. Mental health, behavioural and emotional difficulties can happen for many reasons including following trauma, illness and a life-changing event.
- Clinical psychologists are mental health professionals who work with children, young people and their families to help reduce psychological distress and enhance and promote psychological well-being.
Your child will work with many nurses during their hospital stay, although usually there will be one or two named nurses who oversee their care. The nursing team, as well as providing day-to-day physical and emotional care, will be involved in teaching you and your child about the spinal cord injury.
On admission to the Spinal Cord Injury Centre, your child will be allocated a physiotherapist and an occupational therapist. They will be involved in the assessment and treatment of your child's movement, mobility and independence.
The physiotherapist will work as part of a team, and often especially closely with the occupational therapists, to make sure the physical skills your child develops are used in a way that improves their independence. Physiotherapists wear blue and white.
Occupational Therapists (OT)
OTs will be teaching your child daily living skills, such as how to transfer from their wheelchair to a bed or car seat, assessing them for the type of wheelchair required and prescribing their cushion requirements, in order to achieve good posture. The OT will work to develop upper limb function, teach skills they will need to live in the community, make modifications to their home and school environment so they can manage independently and equipment advise on and get them to trial specialist equipment. The OT will work with the hospital rehabilitation team and your local community services to help your child achieve their maximum independence. OTs wear green and white
After your child's admission to hospital, they will be allocated a case manager who is based in the Community Liaison department of the hospital.
The role of the case manager is to manage and coordinate your child's rehabilitation and discharge. The case manager will ask for your consent to make contact with the local community teams and will provide any training and advice necessary for them to assist you when you return home.
The case manager will also provide advice and support, with follow up visits and telephone contact after discharge.
The role of the orthotist is to assess, measure and fit any orthoses (external devices such as splints and back braces) your child may need to assist their function or to maintain the length and shape across joints and the spine.
The hospital has a dietician who will work closely with the team to provide long-term nutritional care and promote healthy eating.
The play specialist team provides a distraction from the many medical procedures, such as blood tests, which your child will experience. The play can help your child find coping strategies and prepare them for any treatments or procedures by using photos and information books. The play specialist can provide children and teenagers with the opportunity for discussion whilst playing and can also keep your child occupied throughout their stay with a range of activities and equipment, including play stations, X-box, arts and crafts activities and much more.
There is a hospital school to support your child's education while they are an inpatient. The staff can liaise with your child's own school so that appropriate work continues, and any course work or examinations can be planned for. They will also help your child get back into school once discharged or arrange with your local education authority that education is provided by alternative means, such has home tuition, if necessary.
The emphasis early after admission to hospital is on stabilising your child's condition, identifying any other injuries and managing them. You will be very welcome to stay with your child during this difficult period.
These will be taken of the spine, chest and pelvis. If there is any concern about the spine the immobilisation will continue and the spine will be assessed further by a CT scan or MRI scan.
These may be done as necessary.
Monitoring will be undertaken by:
- The medical team. Your child will be repeatedly examined to ensure there is no deterioration in their condition. Changes in their condition will be managed as necessary.
- Electronic monitors. Your child will be monitored on various machines checking their heart rate, breathing rate, blood pressure, oxygen saturation, consciousness level, sensation and movement of their limbs.
At the hospital, your child will be fully examined to assess any other injuries. Other medical teams may need to become involved.
Management of the spine if unstable
This may involve surgery to the spine, or may involve the use of bed rest and the use of appliances that will correct and immobilise the spinal bones while natural healing occurs. If surgery is indicated the spinal surgeon will discuss the type of operation with you in detail.
The operation might be done from the front of the body, the back of the body or both sides, depending on the type of injury to the spine. Metalwork will be placed in the spinal bones to correct the shape and alignment, and to fix the bones - usually with bone graft and metal rods. If your child's spine is managed non-operatively, they may be kept flat in bed for a period of time to allow the bones to fuse naturally. Usually when your child is ready to get up, they will have a brace or collar to provide additional support to the spinal column, whilst healing continues.
When your child's medical condition and spine are stable, they will be able to get out of bed and begin a rehabilitation programme. For some this may be soon after they arrive and for others it could be after a few days or weeks.
The aim of rehabilitation is to promote independence, self-reliance and self-esteem. You will be welcome to stay with your child at all times but sometimes there are benefits in you leaving your child to work with the team. This can sometimes increase their independence and give you time away from the ward. It will be up to you to decide. The initial rehabilitation may take a few weeks or can occasionally mean months in hospital. It will depend on your child's level of injury and other circumstances.
Planning for discharge
A social services referral will be made soon after your child's admission for allocation of a community OT. They will assess your home to establish its suitability for your child's short- and long-term needs. Through liaison with the hospital OT they will provide any equipment required to facilitate discharge. It may be necessary for your home to be adapted to make it fully wheelchair accessible. You may qualify for a disabled facilities grant (DFG) towards the cost of providing these adaptations and facilities to enable your child to live at home. The community OT will explore this process with you
Your child may require some equipment in order to participate in their every day activities. Most of your child's essential equipment requirements will be provided by your local community services team. Some additional items may need to be self-funded and charities can be approached to assist with this e.g. Aspire (see below).
Care package and carer training
Some people with a spinal cord injury will need to have someone to help them with personal care. The hospital team will assess your child and if care is required, a care plan will be prepared with you and your child. A member of the hospital team will then liaise with your local social services department or primary care trust (PCT) to arrange for a suitable care package to be put in place for discharge.
Once carers have been identified, the person coordinating your child's discharge will arrange for them to come to the hospital to be trained by ward staff in the individual care needs of your child. This should include both the practical and theoretical aspects of caring for a person with a spinal cord injury.
Useful internet sites
Aspire has a very simple goal - to provide the support needed to take those who use their services from injury to independence. Through its projects and programmes, Aspire offers practical support to the 40,000 people living with a spinal cord injury in the UK so that they can lead fulfilled and independent lives in their homes, with their families, in work-places and leisure time
The Spinal Injuries Association (SIA) is a national charity for spinal cord injured people. We are unique in that we are a user led organisation with all our Trustees being spinal cord injured themselves. Their aims are to
- Offer support and assistance from the moment of injury and for the rest of a paralysed person's life
- Provide services to increase an individual's quality of life
- Increase knowledge and awareness of the causes and consequences of spinal cord injury
- Campaign for the best medical and social care for spinal cord injured people
The SIA also has some pages dedicated to young people within their website and has some useful publications related to young people and SCI.
Back-Up is a small, dynamic and professional charity that runs a range of services for people with SCI as well as their friends, family and volunteers to encourage independence, self-confidence and motivation following a life changing injury. The charity also organises outdoor activities courses for people with spinal cord injury. These aren't "disabled" holidays, but are integrated courses with 50% participants with SCI, and 50% able bodied. Everyone gets stuck into the activities together. Courses include multi activity weeks in UK, and skiing in Europe and US. There are specific courses for 13 -17 year olds, as well as adult courses.