The Spinal Injuries Association (SIA) have published the results of their 2023 survey as to what really matters to people in the UK living with a spinal cord injury.

The SIA offer information, support and advocacy for those who have suffered a spinal cord injury.

Their report highlights the issues that affect those with a spinal cord injury most and barriers that they may face. The survey is key to informing the SIA’s campaign focus, strategy and goals.

One key issue that affected half of those surveyed was a lack of support from healthcare professionals in bowel management. Almost 70 per cent of respondents who reported a stay in hospital during the last two years reported that they did not receive a good standard of bowel management care. For example, one respondent reported that they required care in hospital after suffering a broken hip and that none of the healthcare staff on the ward knew how to use the anal irrigation system they used to manage their bowel function. There are many other difficult stories to read about this issue in the report.

The survey highlights a need for further training and awareness so that those caring for a spinal cord injury, whether that be GPs or hospital ward staff, are able to provide appropriate support.

The SIA has also recently launched their #SeriousSh1t campaign to affect change and to implement further training in continence care.

Another barrier highlighted was access to mental health support. Almost half of the survey respondents reported that mental health was one of the biggest challenges preventing them from leading a fulfilled life. 47 per cent of respondents reported that anxiety or depression had affected them. Access to psychological support at the point of injury, through rehabilitation, together with ongoing support and support for the families of those with spinal cord injury, is needed. The SIA can provide support and have an inhouse specialist counselling service. This is also available to friends, family, carers or anyone affected by spinal cord injury.

A lack of support from specialists was also concerning. 41 per cent of respondents said they felt they did not have access to specialist rehabilitation and it was worrying to hear at the recent All Party Parliamentary Group discussion on spinal cord injury that there is a significant lack of resources currently, with many people who suffer a spinal cord injury not being treated in a specialist spinal cord injury centre. More than half of the survey also reported that accessing social care, or care in their own home, was also one of their main concerns.