I’ve got a spinal cord injury, what do I do?

Being told you have a spinal injury will mean many different things to different people but, whatever your injury, there are things that you will want to know. This page will start to answer some of those questions but as every spinal cord injury (SCI) is different you may find that you won’t get all your questions answered here. What we do hope to do is to give you some help in understanding some of the terms and phrases you might be hearing and some places to go if you would like more information. It may be that after reading some of this you feel that it doesn’t apply to you but we would still suggest that you make a note of this page as you may want to come back to us in the future if things change or you have an issue that you can’t resolve.

What is a spinal cord injury?

Spinal cord injury occurs when there is any damage to the spinal cord that blocks communication between the brain and the body. Depending on where the damage has occurred it will affect different parts of your body. It will be useful for you to know where the damage is and to understand how your body might be affected but, in the very early days after your injury, your spinal cord may still be reacting to the injury and the full extent of the damage may not be obvious. Each SCI is different, and it will take a bit of time to work out how your body has been affected.  How your spinal cord works

What is a Consultant and what can I expect from them?

The Consultant will be the specialist doctor in the medical team who is responsible for your medical care and treatment. They will be an experienced doctor who has specialised in your particular injury. They will be the one that makes the decisions about treatment you receive and will direct the rest of the team looking after you. They will also take advice from other team members and will involve you in your treatment and care. The Consultant won’t be around on the ward all the time and you may only see them when they do a ward round and they visit you at your bedside, so this is an ideal time to ask all the questions you want to ask. It may be hard to remember all the things you want to ask and if you are not able to write them down you can always ask the ward sister or your named nurse to put your questions in your notes.

Who else will be involved in my treatment and care?

Hospitals can vary in how they manage your care but, in addition to the Consultant, there will be a team of people helping you to get well and acquire skills that will help you to go home. This team of people are usually called a ‘Multi Disciplinary Team’, often abbreviated to MDT, and includes the different health care professionals that you need to get well. They will be working together to get the best outcome for you.

If you have never been in hospital before they can be busy, confusing places with lots of people coming and going. Hospital staff wear different coloured uniforms that allow you to see at a glance what their job is and you will soon get to know which colour uniform is what job. Don’t be afraid to ask though if you are not sure. When you are first admitted to the ward you will be given a named nurse (they may be called something different, but the role will be the same) – this nurse is responsible for overseeing your day to day treatment and care. If you don’t know who this person is then it may be written above your bed or you can ask one of the other nurses. This nurse is the person that is regularly on the ward and the one you can go to with questions, queries and worries about your treatment and care. This doesn’t mean you can’t ask any of the other members of staff but your named nurse will be the one that should be most familiar with your ongoing care and treatment.

It is likely that you will also be seen by a Physiotherapist and an Occupational Therapist. They will work with you to ensure that your physical fitness and practical skills are either maintained or developed and will play a large part in helping you assess what you may need to help you go home when the time comes.

There may be other people involved in your treatment and care but these will be the main ones you come across first. Never be afraid to ask questions of your ‘Team’, they are there to help and support you to get better.

What is a Specialist Spinal Injury Centre?

Depending on your level of injury and other factors, you may be referred to a Specialist Spinal Centre. These Centres are funded by the NHS and specialise in treating and supporting people with a spinal injury. They have staff that have specialist training and experience of working with someone with a spinal injury and will help the patient to gain skills and understand their SCI in order to gain maximum independence. This is often referred to as rehabilitation. Places at these Centres are limited and as a result not everyone will get offered a place. Ask your Consultant about being referred to one of these Centres. Your nearest Centre could be some distance from your home but the help and support you will get will be far more specialised than what you might receive in your local General Hospital.

What should I do if I don’t understand what is happening to me?

Having an SCI can mean some very big changes to the way your body behaves and it’s not unreasonable for you to be anxious, confused and scared. Don’t be afraid to ask questions about these changes, the better you understand why things are happening, the better equipped you are to deal with those changes. You will be able to find lots more information on our website about things that may affect you and what other support may be available. Go to our home page or use the search bar to find what you are looking for. There is a lot to learn and understand after sustaining an SCI and everyone progresses at different speeds, Aspire is here to support you when you are ready to ask the questions.

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