Speak up, speak out!

At SIA, we place the needs of spinal cord injured (SCI) people front and centre of everything we do. Whilst we and our families thank the NHS for offering us the chance to rebuild our lives after injury or diagnosis, we’re also deeply concerned that SCI people, along with others with long-term health conditions, continue to feel the impact of years of under-funding, poor management and woeful planning. No one sets out to deliver poor care, lengthen waiting lists or break up families. But that’s often what happens –  “unanticipated policy outcomes” in the jargon. Every day, we’re alarmed at some of the choices NHS decision makers take; delayed discharge from specialist centres because care packages at home are not in place – even though staying in hospital costs so much more money than an ‘at home’ care package. Then there’s the NHS Trust that is closing its specialist spinal beds despite national recognition that more spinal cord injury beds are needed, or the NHS Continuing Healthcare Assessor who did not know the difference between a tetraplegic and a paraplegic. But enough of the complaints. We’re bigger than that.

It’s almost a requirement of being an SCI person that you are ‘solutions focused.’ Without that mindset, the goal of a fulfilled life would be much more difficult to achieve. But it’s also the mindset we have with our campaigning. Speaking truth unto power is a vital part of our work – NHS decision makers need to know the impact of their choices and how in so many ways, those choices do not always offer a fair deal for SCI people. But equally, they need to hear about the possible solutions. Not ‘pie in the sky’ aspirations, but costed, thought through, practical answers, grounded in reality and recognising the tough world that NHS decision makers occupy. That’s why, across a range of issues such as NHS Continuing Healthcare, the future funding of specialist spinal cord injury services and care for SCI people in general hospitals or out in the community, we strive to work with decision makers.

The good news is that we are making real progress. To take a line from the Rolling Stones – “You can’t always get what you want.”  But often we do. We have won better care funding decisions for NHS Continuing Healthcare claimants, forced NHS commissioners  to rethink their policies that were threatening SCI people with incarceration in nursing homes, and placed safe bowel care practices for SCI people on the nurse training curriculum, to name just a few.

Decision makers listen to us because we speak with the knowledge, huge experience and authority of our nearly 11,000 members – and that’s not something to be trifled with. There are many reasons why SCI people become members – to join SIA Healthcare, to access our Advocacy and Casework services, but also to make their voice heard around issues of care provision, rights, access and the like.

So, if you want to protect services for SCI people, join us today. Just click here – it’s free!

Dr Rupert Earl
SIA Chair of Trustees