At Back Up we know that children who become spinal cord injured can live active, happy, healthy lives and contribute to society like anyone else. But sadly, because not all children get access to specialist rehabilitation and support services, they can be unhappy, unhealthy and dependent on others for the rest of their lives.
"General hospitals have no clue about spinal cord injuries, especially in A&E. I have been asked silly questions like “Can you stand?” and they often don’t know about catheters or autonomic dysreflexia."
Alex, 16 years old
"My daughter has a cord injury at c4/5 and received her rehab at Stoke Mandeville spinal cord injuries centre against the initial recommendations of the Consultant she was allocated to at the Children's Hospital. We were not told we had a choice. The hospital they wanted her to go to was unaccustomed to long stay paediatric patients and had very little experience. The Consultant there told us she would stay 3 months and would leave in a chair - she'd be lucky if she pushed it herself. She left the spinal injuries centre after 5 months - and walked out. You can see I feel very strongly about this issue" Sam, mum of Becky who was injured as a teenager
We want all children and young people with spinal cord injury and their families to have the specialist support they need (including peer support for the child/young person and their family) to be able to realise their full potential.
We want to see clear NHS pathways to ensure:
- Specialist rehab from the early stages
- Specialist support for life and through transitions
- Access to support from Back Up built in throughout
We need your support and input! Here's how you can help:
- Attend our stakeholder meeting in Birmingham on 1 April 2014 (spaces are limited)
- Share your story
- Share your views
Please email Stef
to share your views or get involved, call her on 020 8875 6745 or contact us through our facebook page or twitter. Thank you!