Making the Move from the National Spinal Injuries Centre (NSIC)
We know that discharge can be a challenging time. Hopefully, the list below will help you successfully plan what you need to do, identify what information you need and know when to ask for support.
Make a note of key points as you go through so you can raise them with your Goal Planning team.
Remember, not everything below will apply to everyone as depends on your individual circumstances.
Preparing to go home
Getting your home ready
Adaptations and/or equipment are often necessary to make your home accessible after a spinal cord injury. Your Goal Planning team will be able to advise on what you’re likely to need and will work with you and professionals in your local area to get everything in place.
Arranging alternative accommodation
Sometimes adaptations are not possible or cannot be completed by discharge. In these cases, it might be necessary to find alternative accommodation – this might involve looking at private rentals, purchasing a new property or requesting rehousing through your local authority. If permanent housing is not available by your discharge date, interim (short-term) accommodation, such as care or nursing homes, will need to be found. Again, your goal planning team can support you to identify options (including private purchase of new accommodation) and help ensure your discharge destination is safe and meets your needs.
Discharge-planning alongside rehab
It can feel challenging to focus on getting the most out of your rehabilitation while also keeping track of the preparations for going home. It may help to think about ways to stay connected with any adaptations or alternative arrangements, such as regular progress updates, pictures or videos provided by family or friends. Consider using Facetime or Zoom to see the progress being made on your behalf.
Practising your daily routine
As much as you can, practise as if you were at home: take charge of your own care needs either independently or through instructing others. You might also be able to use the NSIC bungalow, have a home visit or go into town. Start thinking about what adjustments you might need to help you resume meaningful activities, connect with family and friends and return to work if you choose to do so – more details below. Your Goal Planning team will be able to offer advice and support around this.
Care and support after discharge
Getting to know your injury
You are likely to find that many people (including healthcare professionals) are unfamiliar with your care needs. You may even be the only person with a SCI under the care of your GP. For this reason, it is important to know as much as possible about your SCI to ensure you can manage minor issues independently, know when to seek support from professionals, advocate effectively for yourself and share your knowledge and skills with others.
Getting to know your care and equipment requirements
You may need ongoing care, therapy and specialist equipment after discharge. Although your Goal Planning team will help arrange this while you are at the NSIC, the more you know about the specific arrangements, the smoother the transition is likely to be. You will be given a report upon discharge that summarises your admission, often including home exercise programmes, upcoming outpatient appointments and key contact details. It is a good idea to have this to hand when you see your GP, care team at home or District Nurse.
Looking after your physical health
Part of your rehabilitation will be focused on making sure you can maintain your physical wellbeing after discharge. As above, the more you know about your SCI, the easier it will be to deal with minor issues. It will also help to identify important sources of support and work out how to maintain contact with them (e.g. making a GP appointment to familiarise them with your needs).
Connecting with family and friends
Social contact is a key pillar of wellbeing. After discharge from the NSIC, think about who you want to see, when, and in what environment. Also consider what information to share with them about your injury so they feel more confident in supporting you and easing your transition home.
Establishing a peer support contact
Many people with SCI find it useful to talk to someone who has had a similar experience to themselves. The NSIC Patient Education team includes various people who have a SCI. Peer mentors are available through charities such as Back Up Trust.
Finding mental health support
If you require it, professional support with your mental health can come from various sources and take various forms. You can access this independently, via your GP or through charities such as the Spinal Injuries Association and The Back Up Trust.
Knowing your entitlements
Alongside government benefits, you may be able to access various grants and discounts through charities and businesses. The NSIC and spinal charities can also support you to access legal advice if required.
Adjusting to life at home
Planning for change
Going home can be a major transition and can bring some mixed emotions. Take time to prepare for the change emotionally before leaving the centre, for example by talking about your feelings with staff or your support network. You could also reflect on what helps you get through difficult days (such as enjoyable activities, supportive people in your life, mindfulness, etc.)
Creating structure
Structure can help ease the transition from rehabilitation to home. Consider setting up a daily routine, including care, therapy and pleasurable activities. It might also help to continue setting yourself goals. Remember to break tasks down into small steps, establish a time frame for each step and think about who can support you to reach your goal.
Planning activities
Once you have begun to settle into a routine again, you might find it useful to start thinking about life with SCI in the longer term. Think about what was important to you before your injury, or whether there are new activities you would be interested in pursuing. You may find your local area has specific opportunities that apply to you.
Returning to work or studies
As mentioned above, many people return to work (paid or otherwise) or education after SCI. You can access support with this from the NSIC or spinal charities.
Finally…
Don’t panic if you feel there is a lot to do. Your Rehabilitation Goal Planning team is here to help you.