Your friends and family

• Initial emotional reaction to hearing the news – for example anger, anxiety, fear, guilt, helplessness, disbelief, emotionally numb
• You may be given a lot of medical information and it can be hard to take it all in
• The injured person may be sedated while recovering in intensive care; even when awake they may still be confused or easily fatigued. It can feel difficult to see them in a way that is not their normal self
• During the early days, there can be a huge amount of uncertainty around how much the person will recover
• It is important to take care of your own health – eating and drinking, sleeping, accepting help from others

• The rehab hospital or specialist SCI centre might be far from home; it may not be possible to visit as frequently as you or your loved one would like
• There is likely to be ongoing uncertainty about how much the person will recover
• The admission may be several months – how much do you carry on with “real life”, for example whether you take time off work?
• You might feel pressure to “be strong” for the injured person
• There will still be lots of information to take in and you may have lots of questions; on the other hand you might feel disconnected from or left out of the person’s rehabilitation
• Feeling isolated at home, needing to take on extra household tasks
• Responsibility to pass on information to wider support network

• There may not be a “back to normal” so instead you will need to navigate finding a “new normal”
• The injured person may have got used to the daily routine of hospital or rehab and it can take time to adjust to being back at home
• Re-negotiating family roles, for example who looks after the bills, household chores?
• Changes to the home environment – e.g. equipment or downstairs living
• Possibly having district nurses or carers visit the home
• Taking on aspects of personal care – how does this affect the relationship?
• Changes to sex life (if relevant), maybe sleeping in separate beds
• Financial worries if the injured person has to stop working; stress of applying for PIP or other benefits
• Changes to socialising, travel
• Adjusting to living separately if the injured person goes into a nursing or care home

• Recognise and manage your own stress – prioritise basic self-care and take time for relaxation
• Talk to your own support network about how you are feeling
• Ask for and accept practical support from people around you, for example with cooking, cleaning, or taking children to and from school
• While the person is in hospital – speak to staff about what emotional or psychological support is available for family and friends
• Spend time connecting with things that are important to you, outside of visiting the injured person
• Learn about SCI to help you feel informed, ask questions if you need to, and make sure you are getting information from reliable sources
• Try to keep communicating openly and honestly with the injured person and other family and friends
• If stress, low mood, or anxiety are having a significant impact on your wellbeing, speak to your GP about mental health support in your local area
• SCI charities often provide support and advice for families – you can find more details at the bottom of this page

Having a parent or loved one in hospital can be a confusing or worrying time for children of any age. Children don’t always show their emotions in the same way that adults do, and may not react in the way we expect them to. It is important for them to be given age-appropriate information and support. Here are some tips about how to talk to children about SCI:

• Tailor conversations and information to the child’s age. If there are multiple children of different ages, consider having one-to-one discussions as well as a conversation with them all together. Pick a time and an environment where the child is less likely to be distracted or overtired.
• Try to be calm, honest, factual, and consistent. Ensure other adults in the child’s life (e.g. teachers, social workers) are also aware and able to be consistent in the information they provide. Make sure you are well-informed so that you can answer their questions, but don’t be afraid to say “I don’t know” – you can either go away and find out the answer for them, or involve them in finding out together.
• Be guided by the child’s questions. Answer the question that they asked, without going into extra detail, then invite them to ask follow up questions if needed.
• It is okay for the child to see you feeling upset; reassure them that it is not their fault. If your emotions are feeling too overwhelming to be able to communicate effectively with the child, consider involving another family member or trusted adult to support you in speaking to the child.
• Try to keep to a routine of school and normal activities, and keep celebrating important days like birthdays and holidays.
• While in hospital: It can be helpful for a child to visit their parent or loved one in hospital, to keep them feeling connected and involved. However, hospital can be a frightening and overwhelming environment, so talk to them beforehand about what they can expect, give them the option of ending their visit when they want to, and plan to speak with them afterwards about how they found it and answer any questions. Think creatively about how to stay in touch while the loved one is in hospital – video calls are a fantastic resource, but pen and paper letters and drawings can be meaningful.
• Preparing for coming home: Prepare the child for what to expect when their loved one returns from hospital – e.g. changes to the house, changes to daily routine, new people in the home (carers, district nurses, therapists etc)
• After discharge: The child may be interested in helping with aspects of care such as pushing a wheelchair or knowing what to do in an emergency – consider the child’s age, ability, and appropriateness of the task. It is important to maintain boundaries and protect the child from becoming a replacement for a paid carer or adult relative providing care