An estimated 50,000 people in the UK are living with a spinal cord injury, and each year approximately 2,500 people are newly injured. When someone sustains a spinal cord injury, their life, and that of their loved ones, is changed in a second. Navigating this new chapter of life and adjusting to a new normal is scary, so it is important for people to know where they can access support.
We set out below information and contact details for some organisations that provide support, advice and practical help for people living with a spinal cord injury.
Aspire provides a broad range of support to people who have a spinal cord injury, including:
- a housing advice service to provide support around home adaptations that may be needed to make someone’s home accessible following their injury, support with moving home or support dealing with local authorities.
- free advice to people with a spinal cord injury about their benefits entitlement; they also assist with completing benefits applications.
- an assistive technology programme that enables anyone who has a spinal cord injury to use a computer, tablet or phone independently.
Aspire’s website can be accessed here: https://www.aspire.org.uk/, and they can be contacted on 020 89545759.
Back Up supports people affected by spinal cord injury to rebuild their lives and regain their independence so they can go on to live a fulfilling life. Back Up‘s services are designed and delivered by people affected by spinal cord injury. They understand exactly what people are going through and can help them positively adjust to their spinal cord injury.
Back Up offers a wide range of services, including:
- Mentoring – Back Up’s mentoring service links people with a spinal cord injury and their family members to volunteer mentors. These mentors come from all walks of life and have been through a similar experience to their mentees. They understand and can help you come to terms with what has happened and adjust positively to life post-injury
- The Back Up Lounge– an online forum open every other Wednesday from 6pm – 7pm to everyone aged over 18 affected by spinal cord injury, where no conversation topic is off-limits.
- For children and young people – Back Up is the only charity in the UK that has dedicated services for children and young people with a spinal cord injury. Whether you are a child or young person with a spinal cord injury, or a parent or professional, they have a wealth of support and information to help adjust to and get the most out of life after spinal cord injury.
- Wheelchair Skills sessions – to enable people to gain confidence using their wheelchairs in different settings. They also offer an app for people to access tips and advice wherever they are.
- Return to work or volunteering – Support for people deciding to return to work, changing career, studying, or volunteering after spinal cord injury.
- Courses that aim to increase independence and confidence following a spinal cord injury. The groups are led by people who have been through something similar and who know how daunting it can be getting back into previous hobbies, travelling around busy cities in a wheelchair and learning to be independent in a new and different way.
Brain and Spine Foundation
The Brain and Spine Foundation provides expert help and support to anyone affected by brain and spinal injuries. They offer a helpline, peer support groups and health information.
Their website can be accessed here: https://www.brainandspine.org.uk/, and they can be contacted on 0808 808 1000.
Cauda Equina Syndrome
There are specialist charities for those who have been diagnosed with Cauda Equina Syndrome, including:
- Cauda Equina UK
Cauda Equina UK helps with all aspects of living with Cauda Equina Syndrome. This ranges from offering clinical support, advice on how to live with the condition, or speaking to someone who knows what it is like.
Their website can be accessed here: https://caudaequinauk.org.uk/, and they can be contacted on 0800 9878554.
- Cauda Equina Champions Charity
Champions Charity works to enable people with Cauda Equina Syndrome to have a positive recovery and spread awareness of the condition.
Champions Charity recognises that a side effect of Cauda Equina Syndrome is the lifelong issues around sexual function, sensation and fertility. The charity provides dedicated therapy for couples to help them explore their new relationship after this life-changing injury.
Their website can be accessed here: https://www.championscharity.org.uk/, and they can be contacted on 03335 777113.
Neurokinex provides community-based rehabilitation services for people living with paralysis at their facilities in Hemel Hempstead, Gatwick, and Bristol.
As part of this they offer funded schemes, which currently includes the Step Up Scheme. Provided to those who suffered a spinal cord injury in the previous twelve months, the Step Up scheme includes six free sessions in the Gatwick and Bristol facilities following an NHS referral.
For more information and details of how to apply, please see the Neurokinex website.
Rooprai Spinal Trust
The Rooprai Spinal Trust was inspired by Marrianne Rooprai, who was paralysed from the shoulders down in 2004. The charity enables people with spinal cord injuries to access life-changing physiotherapy.
The programme has been designed to help individuals with a spinal cord injury access activity-based physio, recognising the importance of physical activity post-injury. The programme sponsors people to enrol in various courses and physiotherapy programmes across the UK.
Spinal Injuries Association (SIA)
The SIA provides a holistic approach to supporting those with spinal cord injuries by providing them with expertise, connections and essential skills to navigate their way towards a fulfilled life.
The services the SIA offers include:
- a team of clinical specialists who help people create a personalised care plan that is unique to their needs and takes account of any emergency plans that should be put in place for their safety.
- an advocacy team to assist people in navigating this new chapter in their life and ensure they are receiving the care they deserve. If people are given inappropriate support or treatment, the SIA will provide them with the representation they need to challenge this by attending meetings or assessments with them and generally guiding them through the process.
Their website has lots of helpful information on life following a spinal cord injury. Their website can be accessed here: SIA Website. They can also be contacted via their support line on 0800 980 0501 or by email at firstname.lastname@example.org.
Wheelpower is at the heart of wheelchair sports and provides opportunities for disabled people, including those with spinal cord injuries, to get into sport and lead an active life. Wheelpower supports participation from all levels of sporting experience.
Their website can be accessed here https://www.wheelpower.org.uk/, and they can be contacted on 01296 395995.
There are various sources of information to help you work out if a place is going to be accessible for you, including:
Their website allows you to find wheelchair-friendly venues and facilities. Their website can be accessed here: https://www.accessable.co.uk/, or downloaded on the Apple App Store or the Google Play store.
This website allows you to book accessible hotels and trips and provides a forum for others to discuss their experiences with their bookings. Their website can be accessed here: https://accessiblego.com/.
Various charities are involved in fundraising for and undertaking research into spinal cord injury. If this is something of interest, some of the organisations and information about how you can get involved are set out below:
- Nicholls Spinal Injury Foundation (NSIF)
NSIF is a dedicated funder of research at the forefront of treating paralysis caused by spinal cord injury. For more information on their research and how you can get involved, you can visit their website here: https://www.nsif.org.uk/.
- Stoke Mandeville Spinal Research
Stoke Mandeville Spinal Research runs an ambassador programme for individuals eager to get out in their community talking to groups about their own experiences of spinal cord injury. The group aims to inspire and guide others.
They are currently involved in a research project into the use of a robotic exoskeleton for upper limb rehabilitation.
For more information on how to get involved, you can visit their website here: https://www.lifeafterparalysis.com/ambassador-programme
- Spinal Research
Spinal Research is the UK’s leading charity funding research around the world to develop effective treatments for spinal cord injury.
They participate in various fundraisers to raise vital funds for their research. Their next challenge in 2023 is an Alpine Challenge across France, Italy and Switzerland.
For more information and to get involved, you can visit their website here: https://spinal-research.org/.
Paralegal Natalya Salt contributed to this article.