News
Inquiry launched by the APPG on Spinal Cord Injury
The All-Party Parliamentary Group (APPG) on Spinal Cord Injury is running an inquiry to understand what life is really like for people affected by spinal cord injury (SCI) and how things can be better.
Inquiry session timetable
- 1: The need for a national Spinal Cord Injury strategy (2 June)
- 2. Rehabilitation (9 June)
- 3. Agreed Standards & Training (16 June)
- 4. Lived Experience Roundtable (23 June)
- 5. Reintegration into the Community (30 June)
- 6. National Research & Patient Voice Infrastructure (7 July)
We believe that the voices of people with lived experience are vital to shaping a national strategy that meets real needs. We want to hear from people who live with SCI, as well as their families and carers. Your views will help us show the Government and NHS why change is needed, and what support should look like at every stage, from early care and rehab to returning home and living a full life.
You don’t need to be an expert or write in any special way. Just tell us what you’ve experienced and what you think needs to change. You can answer all of the questions below or just the ones that matter most to you.
Questions to guide your submission:
- What has your experience of care and support been like since you or your loved one’s spinal cord injury? (Think about hospital care, rehab, equipment, mental health support, or anything else.)
- What are the biggest challenges you’ve faced when trying to live independently after the injury? (This might include housing, work, travel, or getting the right help in the community.)
- Have you felt there was a lack of joined up or consistent support across services? If so, how did this affect you? (For example, different services not working well together, or care depending on where you live.)
- What would have made the biggest positive difference to you or your family? (Is there something you wish had been done differently, or a service you didn’t get but needed?)
- What message would you like the Government and NHS to hear from your experience? (This could be your top recommendation or anything you feel is important for them to understand.)
We’re also inviting professionals and organisations who work with people affected by spinal cord injury (SCI) including those in healthcare, law, and care provision to share their insights. Whether you work in hospitals, the community, legal support, or home care, your frontline experience is vital. We want to understand the challenges, good practice, and what needs to change to deliver better support across the SCI pathway.
Please use the questions below to guide your response. You can answer all or some of them, and you canwrite as much or as little as you like.
Questions to guide your submission:
- From your perspective, what are the biggest gaps or challenges in the current support available for people with spinal cord injuries?
- Where do you see good practice or success stories and what helps make those possible? Are there examples of effective care, support or advocacy that could be built on?
- Do you see variation in services or outcomes based on where someone lives or the type of support they need? Please share any examples of regional or systemic differences.
- What would a more joined-up, national approach mean for the people you support and for your own work?
- What are the top changes or priorities you believe the Government and NHS should focus on to improve life for people with spinal cord injuries?
Please send your written submission to [email protected] by 11.59pm on the 8th of July.
Every story matters and will help shape a national conversation about what good care and support should look like for people with spinal cord injury. Your insights will help inform recommendations to Government and NHS England as part of the inquiry into the need for a national strategy for spinal cord injury.
Thank you for contributing your expertise.
SIA Campaigns team