People with a spinal cord injury who can walk

In 2015/16, Back Up carried out research into the needs of people with spinal cord injury who have an incomplete injury or who can walk some or all of the time.

Our aims for the research:

• Better understand the barriers that people with spinal cord injury who can walk face
• Identify what support people feel they need
• Raise awareness of the challenges people face
• Highlight what works and ways forward.

How we did it

This research was undertaken through interviews and a survey of people with a spinal cord injury who can walk.

What we found

Our research identified a need for better information on what support is available and for more effective communication between professionals. The main themes of the research were:

Feelings of guilt
Some people told us that a lack of understanding can lead to people feeling guilty particularly in hospital when they find themselves progressing, while their peers do not.

Pain and fatigue
This told us that a number of people who can walk experience pain and have difficulties managing this, impacting on their day-to-day lives. Jacques says, “Walking is also quite painful for me after short distances and finding a place to sit down becomes a priority so I opted to use a wheelchair most of the time.” Some of those who can walk, or are very incomplete, suffer from fatigue, which is debilitating itself.

Invisible disability
‘You look normal’… ‘You look less disabled now’. It takes time for people to adjust if they or their family member has a disability that is not always visible. Some may also feel that this lack of visibility means that they don’t have a right to use accessible toilets and parking spaces.

Perceptions of the impact of their injury
When people hear that someone can walk, they assume everything is fine. Most people are unaware of the other symptoms of a spinal injury, such as nerve pain, spasms, and bladder and bowel issues. This includes professionals. There are very few services specifically for this group.

What’s changed as a result

As a result of this research, we set up a working group with people who can walk to develop a new Back Up course: Next Steps. This course was launched in 2016 and aimed to help people to rebuild confidence and independence.