Nicholas Young and Elizabeth Davies from JMW’s clinical negligence team, recently attended the Spinal Injuries Association (SIA) Rebuilding Lives Conference 2026.

They had the opportunity to hear directly from people living with spinal cord injuries, alongside clinicians, service providers, charities and other professionals working to support them. In this latest blog they share what was discussed and how one of the most valuable aspects of the conference was hearing first-hand accounts from individuals living with spinal cord injuries, and the challenges they continue to face long after they leave hospital.

The gap between discharge and ongoing support

While advances in acute medical care have improved outcomes for many spinal cord injury patients, a recurring theme throughout the conference was that discharge from hospital is just the beginning of a much longer journey.

Speakers highlighted the difficulties many people encounter when trying to access the support, equipment and services they need to rebuild their lives in their homes and maintain their independence within the community. These barriers can have a significant impact on an individual's independence, wellbeing and quality of life.

This is something we witness and hear from the many clients we have supported with a spinal cord injury, including those who have cauda equina syndrome.

Why cauda equina syndrome patients can often be overlooked

Although the SIA supports people affected by spinal cord injuries at all levels, much of our work focuses on helping individuals who have a permanent cauda equina syndrome (CES) as a result of delayed diagnosis or treatment.

One of the key reflections from the conference was how easily CES patients can be overlooked because they often fall into a ‘grey area’ when it comes to accessing support, particularly where they retain some mobility despite significant disability and other long-term effects.

Many CES patients experience chronic pain, weakness, numbness, bladder and bowel dysfunction, sexual dysfunction and significant restrictions on mobility. However, because they have often retained some mobility, even if it is significantly reduced, their needs may not always be recognised in the same way as those individuals with more complete spinal cord injuries.

Struggle to access support

A clear example is access to wheelchairs and specialist mobility equipment. Individuals with complete spinal cord injuries often meet established criteria for wheelchair provision. In contrast, CES patients may struggle to access the same support because some can walk short distances, despite experiencing severe fatigue, instability, pain or significantly reduced mobility.

This can leave people without the equipment that could make a significant difference to their independence and quality of life.

Learning from lived experience

One of the greatest strengths of the Rebuilding Lives Conference is its focus on lived experience. The stories shared by those with a spinal cord injury help shine a light on the practical realities of navigating life after injury and the challenges that can arise when support systems do not fully meet patients' needs.

A recurring theme was the importance of collaboration between healthcare professionals and people with lived experience of SCI in order to improve access to the services they require

It was particularly valuable to hear about the work being done to address some of the gaps in support in NHS care, particularly following discharge. The SIA is also campaigning for changes that could make a real difference to people’s independence and quality of life, including improving access to public transport for people with disabilities and promoting more joined-up care and support following discharge.

These discussions provided an important reminder that the consequences of a spinal cord injury extend far beyond the initial medical treatment.

Need for support continues

For those of us representing people affected by spinal cord injuries, including cauda equina syndrome, these conversations serve as a reminder of the importance of looking at the whole person and the challenges they may face throughout their recovery and beyond.

Where an injury has resulted from medical negligence, securing appropriate compensation is an important part of ensuring that a person can access the care, rehabilitation, equipment and support they need. But the legal process is only one part of someone’s wider journey. Understanding the services available and the barriers people face is equally important when supporting clients and their families.

While medical treatment may end at discharge, the need for support, understanding and advocacy continues long afterwards. For many people with a spinal cord injury, rebuilding lives is an ongoing process, and listening to those lived experiences is essential if we are to help drive meaningful change.