Help families devastated by spinal cord injury rebuild their lives
My name’s Tina. My lovely Dad, David, was a fit, active 83-year-old. Laying decking, directing traffic at Scouts’ fundraisers, president of the local classic car club.
When he started feeling a bit under the weather, he took himself off to hospital for some tests, as independent and upbeat as ever.
What happened next turned our world upside down
Dad was diagnosed with myeloma – a type of blood cancer that develops from plasma cells in the bone marrow. His kidneys were failing – his bones increasingly fragile.
He was discharged in a wheelchair, with NOTHING for his spinal cord injury.
You can help make sure no family is left alone when spinal cord injury strikes. DOUBLE your donation between 29 November – 6 December on Spinal Injuries Association’s Big Give Christmas Challenge campaign page.
When someone you love comes home with a spinal cord injury, it can feel a bit like being handed a new-born baby. That same huge sense of responsibility. The same overwhelming fear you’ll do something wrong. Except, as a parent, you’ve got family, friends, books you can refer to. You know where to go for help. We were lost – had no idea where to turn to help our Dad.
He was suicidal – on a cocktail of chemo drugs, feeling sick and desperate. I was in meltdown. Every day, district nurses, social workers, hospice staff – the house was like Piccadilly Circus. But no-one had an overview. No-one seemed able to tie everything together – so nothing got any better.
Teresa – on SIA’s support line – was my first port of call. She was, quite literally, a lifesaver.
Teresa referred us to our local support coordinator, Gareth. It was such a relief to hear him say “I’ve got an injury very much like your Dad’s”. And to see that he was living his life.
I was spilling my guts to Gareth. Everything I mentioned – catheter, pressure ulcers, wheelchair, mental health – he said yes, SIA can help with that
Just £20 could pay towards life-practical advice and a positive insight into life after injury from someone who’s been there. Donate now to DOUBLE your donation through SIA’s Big Give Christmas Challenge campaign page.
I was spilling my guts to Gareth. Everything I mentioned – catheter, pressure ulcers, wheelchair, mental health – he said yes, SIA can help with that. Can you imagine the relief as I reeled off my long list of worries and fears – and he checked off each one?
I didn’t know what I didn’t know SIA filled in those blanks.
Dad had to go back into hospital with suspected septicaemia. With help from SIA’s clinical specialists, we’d made an emergency care plan. It’s just a paper form, downloaded from SIA’s website, but it contains all the information about injury, his medication, the risks of autonomic dysreflexia (AD) and skin damage. And I can’t tell you the peace of mind I got from handing it to the paramedics who picked him up that night. The feedback from A&E was – “this is brilliant”.
Could you give £20 to pay for a spinal cord injury clinical specialist session? Your gift could save someone’s life with a personal or emergency care plan like David’s.
I attended one of SIA’s virtual cafes, my little grandson asleep while I joined the Zoom call. I was the only person not in a wheelchair, but I was made so welcome. It was a lovely feeling – everyone sharing their thoughts and ideas. A sense of hope and real community. Dad was in a dark place at the time, so depressed.
He desperately needed counselling. He’d been diagnosed with cancer, sustained a spinal cord injury, and then he lost his wife to cancer. At one point we had paramedics stationed outside the house because he was suicidal.
Your £20 could pay towards professional counselling for people learning to live with spinal cord injury. Make your gift worth TWICE as much when you donate before Tuesday 6 December.
But the GP couldn’t get him counselling – and neither could the hospice. There were waiting lists everywhere. Thankfully Ian, who’s spinal cord injured himself and leads SIA’s professional counselling service, was able to help. Having no control over his bowels was one of the biggest issues for Dad. Being able to talk about this with someone who truly understood made such a difference to him. And then Damian, one of SIA’s clinical specialists, spent time with Dad trying to help him establish a bowel routine.
SIA’s advocacy team showed me how to make the strongest case for Continuing Healthcare (CHC) funding, then supported us through the process, attending meetings and really fighting Dad’s corner. As a direct result, Dad has 24-hour care now. And SIA has helped us offer his carers specialist training – not just in spinal cord injury care – but also end-of-life care for someone with a spinal cord injury.
Could you give £20 to help another family get the care they need to help a loved one rebuild their life after a spinal cord injury?
Proper care can make such a difference to quality of life when there’s limited precious time left. Please help other families like mine rebuild their lives together after spinal cord injury.
We know times are tough for everyone right now, and we’re especially grateful for anything you can spare in the run up to Christmas. The Big Give is a great way to make your generous gift go further – THANK YOU SO MUCH.