Alex Lewis, Founder, Alex Lewis Trust
Alex Lewis: The cost of my life
Cast your minds back to November 17th, 2013. Katy Perry had announced her World Tour. Turkey and sprout prices rose 20% in the run up to Christmas and I, unknowingly, was dying. That was the day that, once I was rushed to hospital early in the morning, my family were told that I had contracted Strep A and that I had a 3% chance of survival. My timing was excellent as I met the right anaesthetists and intensivists who somehow saved my life in the following seven days.
We hear these stories all the time in sensationalist newspapers but we never hear about the knock on effects on our daily lives and, more importantly, our families’ lives.
A big price to pay
The 10 days I spent at the pleasure of Royal Winchester Hospital was the beginning of a seven month stint resulting in the loss of both legs above the knee, my left arm and another 100 hours of surgery to keep me alive and well. I remember being moved to Salisbury Hospital and once I arrived, turning to my partner Lucy and saying “How are we going to afford this?”. At that point I wasn’t talking about the surgery, the hospital bed cost and nursing fees. An estimate on my stay would cruise into very high six figures, if not seven. We are incredibly fortunate that we have an excellent health system at acute care level, free at the point of delivery, and one that I am indebted to. I was talking about the unforeseen costs, and the dramatic loss of income.
I’m talking about the costs of running the TV, if your local hospital has them in your room/cubicle. The cost of supplying drinks from vending machines. The costs of supplying edible food. I found hospital food rather disappointing to say the least, especially as I’d lost over half my body weight in the space of a few weeks, so weight gain was integral to my wellbeing.
These relatively innocuous costs over a long period could run into thousands of pounds. Add to the fact that, if you have a partner/husband/wife, they are left running the household on their own – my partner and I are both self employed so our income halved immediately. The other half that still has to work to keep the familial equilibrium but still wants to see you every day. The parking fees! The parking fees!! I am in no way condoning such a thing but I heard a story of a lady who came in to see her other half in hospital every day over seven months. If she had paid the parking fees it would have cost an estimated £4,000. She decided to risk it each day and over the period she incurred parking tickets totalling £240! To that lady I doff my cap.
The emotional costs
As a patient I had access to psychological help as and when I needed it – which was a huge support. Limb loss and surgery were things I got my head around as I knew they were necessary for my survival. Survival meant that I would see my son grow up, play with my Labrador and grow old with my partner Lucy. I had time, lots of it, to come to terms with my new body and the potential pitfalls of what had gone on. Lucy, having to maintain her business / see me / get Sam to school / walk the dog / manage our money and pay for all the unexpected costs / come to terms with the situation, had to rely on help from our incredible friend and familial network. Our network spans from years in the hospitality industries and because of that we made it through. Whilst in hospital we witnessed families not as fortunate trying to comprehend a future full of the unknown, and with escalating costs. That, for me, was the hardest part. I realised that there was next to nothing available to families who were simply unable to cope.
In the UK, and I’m sure in other countries, we seem to focus on ‘cure’ rather than ‘prevention’ in these circumstances. With the right advice at the beginning of an adventure like mine, families could put plans together. They could develop strategies to survive what is possibly the hardest time of their lives, strategies to meet future costs and a sudden loss of income. Access to information is crucial in these circumstances. One very good friend of ours simply couldn’t cope with the physical transformation of my good self so, rather than just feel uncomfortable for half an hour once a week, she helped by taking to Google and researching everything to do with amputation and future costs attributed to it. Practical help which we relied on heavily was just one part of the process but a necessity.
The power of sharing
My illness may have cost a fortune while I was in the hospital but now that I’m a quadruple amputee, I have a life cost of just over £3,000,000 in prosthetics/wheelchairs/adaptations etc, etc, etc. Surgery is just the beginning for many of us, with the costs spiralling once we arrive home. These are costs that I’ll get some limited help to meet, but that my partner and I are going to have to plan for, for the rest of our lives. There is no ‘cure’, but with the right access to advice and sound information we can map a path through this life less ordinary. It’s up to us, the patients and families, to be willing to share our stories and experiences to offer a light at what can, more often than not, seem a very dark tunnel.