From the bottom to the top

Our two SCI nurse specialists Carol Adcock and Debbie Green were recently training health and social care staff from across the country in bowel management techniques. It’s a subject very few people want to talk about, but it’s really important that we do so as good bowel management is, for many spinal cord injured people, a vital part of being able to lead an independent and fulfilled life.

Meanwhile, a member of our staff sits on the NHS Continuing Healthcare Stakeholders Forum, a NHS England body that shapes the development at a strategic level of policy around the funding of packages of care for those with the greatest care needs.

So what’s the connection? Well, to meet our mission of supporting SCI people to lead fulfilled lives, it’s essential that we actively engage with the NHS – one of the most important organisations in the life of SCI people. We do that at lots of different levels and in lots of different ways. Many of our members appreciate how different parts of the NHS have supported their care and rehabilitation – whether it’s at the point of injury, during rehabilitation or beyond. We recognise the fantastic commitment of NHS staff and how they often work in challenging circumstances – something recognised at our 2017 Rebuilding Lives Awards earlier this year which saw numerous nominations and awards from across the NHS.

Our Peer Support Officers – all spinal cord injured themselves – are made welcome on the wards and regularly meet newly injured people in hospital at the start of the rehabilitation journey. The team’s personal experience of SCI makes them ideally placed to provide a positive insight into life beyond injury – something recognised and appreciated by care staff as much as SCI people themselves. Meanwhile our SCI nurse specialist help drive standards of nursing care by sharing vital information on SCI with other health professionals.

Yet too often we also hear a different story; a dispiriting tale of people battling to get good care and a failure to place the patient’s interests at the heart of decision making. We estimate, for example, that about a third of spinal cord injured people do not get access to a specialist SCI centre and the expert skills that can make all the difference during their rehabilitation. We speak up on issues like that and to robustly challenge the NHS when we think they could be doing things better.

We like to think of our relationship with the NHS as that of a critical friend – we’ll shout and cheer when they’re doing the right thing, but we’ll also make our voice heard when our members tell us they’re not getting the care and support they need and deserve. It’s one of the great benefits of being an organisation whose work is shaped by the experiences of our members – over 70% being SCI themselves. We bring a unique insight that is sometimes forgotten but is always valuable – that of the SCI person themselves.

We can offer praise or concern – quite often in equal measure and sometimes with the same breath. The NHS is an organisation that’s central to the lives of SCI people, their family, friends and carers. And that’s why we’ll be working hard to ensure our vital and unique voice continues to be heard across the NHS as we campaign and influence on behalf of SCI people.