Pete's story
Pete, age 43, sustained his spinal cord injury in a skydiving accident ten years ago, breaking his neck at C5 and leaving him with tetraplegia.
His accident happened while he was living and working in New York, and he spent his first few months in hospital in the States, where, due to poor care in the weeks following the accident, he sustained a serious pressure ulcer, leaving him unable to access physiotherapy as a result. Because of this, Pete is unable to transfer from place to place, relying on a hoist to get him in and out of bed.
Following his spell in hospital in the US, Pete came back to live in England, where he met his wife, who was his occupational therapist.
Pete now lives in Co Armagh with his wife and two young children, working as a software developer. He uses a touch screen with a track-ball while working, and is also one of our trustees. His children are three years old and three months old.
‘When I lived in England, I had Continuing Health Care (CHC) from the NHS, which paid for me to have a 24-hour live-in carer. Then, after I got married, I had a carer who was classed as live-in, but actually stayed nearby in an Air B&B and travelled in from abroad.
My carers came from Active Assistance and were mostly Polish, Czech and Slovak, and I had great experiences with most of them. They would generally stay with me for two weeks to a month, before returning home.
The independence it gives me is incredible. I know the difference having a good carer can make
People don’t appreciate that it’s a really tough job. The carer has to put their own life on hold while they look after you. They don’t have the time to maintain their own relationships.
They come in the morning and get me out of bed, they do my bowel and bladder routine and get me dressed and washed. In the evening they come back and do it all again. The independence it gives me is incredible. I know the difference having a good carer can make.
My situation now is that personal assistants are very difficult to find, and the stress that causes me is huge.
the thought of being left high and dry in bed without anyone turning up is terrifying
I think what the hell am I going to do if I can’t find a PA? It can be extremely dangerous for a tetraplegic person to be left on their own, especially because of the risk of autonomic dysreflexia*. I also have serious issues with my blood sugar, which could also result in an emergency if I was stuck in bed and unbale to help myself.
So the thought of being left high and dry in bed without anyone turning up is terrifying.
I’ve never found it so hard to find carers. I pay for adverts on indeed.com and my wife’s family will post things on Facebook and so on. When I first arrived here I had loads of applicants to be my carers. Now, it’s so difficult to find anyone, I’m advertising but nobody is replying.
And the increased risk of Covid is terrifying too. I currently have two personal assistants working for me when I should have three. If either of them goes off sick I will be unable to get up or work for half the week.
The thing is, I’m a professional person, developing software for international companies. But the CHC assessors hardly ever experience people with tetraplegia who are able to work. The politicians think people with care needs are incapable of thinking or of adding value to society. Well, it’s not true for all of us. I will speak up and I will complain.
*Autonomic dysreflexia is a condition which develops in people with spinal cord injury which can potentially lead to heart attack or stroke.