My husband and I were both working on a port-building project in Abu Dhabi . I was nearing the end of my contract in 2007 when the unthinkable happened. Hubby got sick with a staph infection in his neck, which crushed his spinal cord causing partial tetraplegia (quadriplegia ). Suddenly my world was turned upside down.
After a month recovering in a UAE hospital we were airlifted back to the UK. The rest of 2007, I lived as a hobo in various hotels. At first he was in a NHS hospital specialising in spinal cord injuries, which was such a bad experience that we decided to use our savings to move him to a private rehab hospital in London. In late 2009 Hubby was assessed as needing NHS provided continuing care, I thought this would be the answer to my prayers, I had not managed to earn any significant wages since 2007 and money was beginning to get tight.
How wrong I was!
At first we were allocated a care agency who were barely qualified to provide social care let alone the specialised medical-based care that hubby needed. I still find it utter astonishing that having passed a detailed assessment to prove an on-going medical nursing need rather than social care need, people are allocated minimum wage , badly trained, amateur care workers.
We have had carer workers allocated that have had nearly as many medical and social issues as the person they are supposed to care for. One was a diabetic who didn’t have his condition under control – he could have blacked out ar any time. What would have happened if it occurred when Hubby needed help with a life-threatening Autonomic Dysreflexia attack? There were older care workers so frail with arthritis that they just couldn’t do the physical demanding work required. Most had the attitude that it was okay for them to sleep on night duty, and turn up late for day and night.
Its 2014 – five years on – and we still haven’t managed to obtain a stable reliable team for Hubby, so that I can think about returning to any kind of job where I could leave the house every day to go to work.
Having thought we had finally got something sorted last August, I started to work unpaid with a group of friends who have started up a new rail company. They’ve been very patient with my situation but I can’t become a paid member of their team until we get our care worker situation sorted out. I would be too unreliable. So how long they will want me on board when I can’t attend meetings etc I do not know.
By now in my career I should be earning between £60K-£90k per year. Even at the most conservative estimate, the failure of the NHS to do its job has cost me £250k in lost earnings.
But it has cost me a lot more than that. It is very expensive to be disabled. We live in a flat that is totally unsafe for wheelchair dependant Hubby; he has a wheelchair that does not totally meet his needs; he doesn’t have the gadgets that could make his life a lot easier. If I could work I could make his life a lot easier and more comfortable.. We do try and get away on holiday as the heat does him a power of good, but that does not come cheap with all the necessities like the special travel insurance , equipment hire etc. To do that we have to live very frugally the rest of the year.
On a personal level I loved my work and was god at it and to have it taken away from me is very difficult for me handle. I enjoyed the intellectual stimulation, the interaction with all types of people, the travel and of course the freedom money gives you to make real lifestyle choices.
Wouldn’t you feel the same?
I write under the pseudonym Onmybiketoo for two reasons. One, I was an avid cyclist and two, after school I was looking for work during the time when Norman Tebbitt made his ‘get on your bike’ speech.
Growing up in our home was tough, and there was no spare cash. Dad was the only breadwinner in the family. He was good at what he did (valve engineering) but it didn’t pay well. Mum was in and out of hospital ,so couldn’t work. Both my parents instilled in us kids that the only way out of poverty was education and hard work. If we didn’t want to end up like them, we had to work hard.
I left school at 17 with a good assortment of O-levels, I’d tried to stay on to do A-Levels but found I couldn’t get back in the groove again. So I started work in the civil service at the bottom as a clerical assistant. After a while I realised I had made a huge mistake and started to take A-levels at college night school. Eventually I joined the railways and worked my way up through the ranks, taking more courses and exams part time.
Having built up a solid reputation over 20 years and wanting a change I moved into project management. This gave me the chance to work in wartorn Iraq in 2004 with mainly American teams rebuilding the country’s infrastructure: their water systems, sewerage, dams, railways, oil, roads, schools etc. 2004 was also the year that – during one of my holidays from work – I finally married after a very long engagement of 15 years. Three years later, I became a fulltime unpaid carer.