Frequently Asked Questions
When your loved one is newly injured there are often many questions, and it can be difficult to know where to turn. We’ve included some of the FAQs that we receive below, but if you have any other questions or need support please contact us via email or on 020 8875 1805.
I’ve heard medical professionals using terms like complete/incomplete injury or ASIA. What do they exactly mean?
Back Up explains what a spinal cord injury is here However, there are quite a few terms and acronyms in the world of spinal cord injury. Here are couple briefly defined for you:
Complete/Incomplete injury: Refers to whether the spinal cord has severed completely or not. If someone has a complete injury they have no movement or sensation below the level of injury. If they have an incomplete spinal injury then there may be some movement or sensation below the break.
ASIA (A,B,C,D,E): ASIA scale stands for the American Spinal Injury Association and is used to measure the degree of completeness of the spinal cord injury with “A” being a complete spinal cord injury and E meaning the cord is fully intact.
If your partner/relative has an incomplete injury they may be recategorized during their rehabilitation (e.g they may go from an ASIA B to an ASIA C) if they regain more movement and sensation. It is important to note, as there is no known cure for spinal cord injury, your partner/relative will not move from a ASIA D to an ASIA E. Similarly if your partner/relative is categorised as an ASIA A it is very unlikely they will be recategorized during their stay at rehab as the cord has been completely severed.
To learn more, register for one of our Relatives’ Days here where spinal cord injury healthcare professionals provide further information and other family members in your situation can share their experience.
Where will my relative with a spinal cord injury live when they are discharged?
Housing after spinal injury can be complex if it is not something you have had to deal with before. It’s important that you don’t give up you private or council let house until you have plans in place to move somewhere else (even if you know your loved can’t access the property when they leave hospital). Your relative will receive a home visit from the community OT (occupational therapist) before their discharge from hospital who will make suggestions around temporary/permeant housing solutions. These suggestions will be tailored to your living situation (whether you own, privately rent or live in a council property). Your OT can also advise on local authority grants to adapt your current property if you own your home or are moving in with family.
Charities like Aspire can help with advice and temporary accommodation should you find yourself stuck immediately after your loved one’s discharge. Read more about Aspire’s temporary accommodation here.
It can sometimes feel like you might want to rush through decisions around housing and adaptations because your loved one is living in unsuitable conditions, such as a hospital bed in the living room or using a commode. While this can be unpleasant short term it’s important that you talk to your loved one about the adaptations they need and make informed decisions. After all, this is your home and everyone needs to be comfortable living there.
What care will my relative need when they come home and how much will I need to do?
Your relative will have a care assessment whist in hospital and will be recommended a care package. Not all people with a spinal cord injury will need a care package and the assessment largely depends on level of injury, arm strength and function and age, as well as looking at pre-existing conditions which may impact on someone’s ability to do day-to-day tasks. These include dressing, washing, eating & personal care. Care is a two way conversation and we would encourage you to talk to your relative/partner and the medical professionals at the hospital and ask as many questions as you want about the practicalities around care.
Some people do choose to be their relative’s carer, however it is important to say this this should always be a choice and you shouldn’t have to do your partner/relative’s care if it’s not something you want to do. If you are concerned around the amount of care your relative is receiving or want to talk about care funding, Spinal Injury Association has a dedicated care advice service.
If your partner/relative is discharged not needing care they may need support from you as the attempt to relearn how to do everyday activities such as cooking and house work. It’s important that you don’t just do everything for your partner/relative and that you are able to have an open conversation about how you can support them to gain and retain their independence. Back up has a range of courses designed to increase independence. Click here for further information or call us on 020 8875 1805
How do I explain spinal cord injury to children?
It can be difficult to explain spinal cord injury to very young children. A good way to do it is to explain what the person with the injury can do now rather than focusing on the reasons behind the spinal cord injury and slowly introduce them to it that way. This youtube clip featuring Christopher Reeve on Sesame Street gives a good insight about spinal cord injury to children and may be a good resource.
If you are worried about how to explain spinal cord injury to children then it might be a good idea to speak to one of our mentors with lived experience of this or contact us at 020 8875 1805 or via email to talk to our dedicated children and young people’s services team.
What happens when things go wrong after my loved one is discharged?
This question goes through everyone’s mind so you are not alone. The truth is things can and probably will (at some point) go wrong when your partner/relative comes home, this could be them falling over, coming out of their chair or missing a transfer. You and your relative are still learning how to live with spinal injury. The good news is that there are plenty of people who can help. Back Up’s range of services for people with a spinal cord injury and their family members can link you to others that are affected by spinal cord injury and can offer support. Email us or call on 020 8875 1805
For any medical issues you will be given the number of the outpatient service from your rehab centre, your GP can help and if there is something urgently wrong do dial 999. If you are worried about your relative having a fall and not being able to get back up or back into their wheelchair (if applicable).
With my partner/relative unable to work, I’m worried I won’t be able to afford bills/rent/mortgage??
If you are worried about money the first thing to do is talk about it. Employers have a sick pay policy so it is important to find out from your partner/relative what that might be. If they are self-employed, do they have an insurance policy to cover long term sickness and loss of income? If you are concerned about your mortgage, speak to your mortgage broker who could potentially put you onto an interest only mortgage or arrange a mortgage freeze where you don’t have to pay anything for a allotted number of months. The Financial Conduct Authority (FCA) have duty to protect “vulnerable customers” who are no longer able to keep up with their repayments due to illness or injury. For some impartial and informed advice on covering bills and rent/mortgage speak to the citizens advice bureau. Aspire have a “Money Matters” service where they can help you maximise your income by advising you what benefits you and your relative may be entitled to as well as minimising your outgoings and advice on speaking with your creditors and prioritising your debts.
I think/I’m not sure if my loved one has a legal case, what do I do?
When it comes to personal injury claims it is always best to check to see you have one than not, the worse case scenario is that you don’t have a claim but you are left no worse off. If you do have a claim. it is really important to choose a firm that specialises in spinal cord injuries, the reason being is that they will have a much better understanding on what your partner/relative will need to lead as full as life as possible. Back Up have a legal panel, all of the firms on the panel have specialist knowledge in spinal cord injuries and can be viewed here
Initial consultations with any of our legal panel are always free so there is no cost to enquiring as to whether you may have a case. We would always recommend speaking to several firms before deciding on a solicitor. It’s vital you have the right solicitor for you as they will be with you for quite a few years to come if you have a legal case!
Do you need support after a relative sustains a spinal cord injury? Register for support.