Steering My Own Boat and Making a Splash

Steering My Own Boat and Making a Splash
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john connor

The U.K.’s National Health Service (NHS) turned 70 last week. In England, yes, we are mourning our semi-final defeat by Croatia in the World Cup, but to most of us, the NHS is the U.K.’s crowning glory. There are innumerable problems and proposed solutions involving the institution, yet it crosses the political divide. It was started by the most left-wing Labour government this country has ever had, swept in — over even Churchill’s Tories — by a general election before the end of the war against Japan. It has endured since then, despite the majority of governments being Tory-led. Even Margaret Thatcher didn’t dismantle it.

If you’re going to get MS, being a British citizen sure takes the load off. From the beginning, I’ve had excellent care. Sure, I’ve had to duck and dive a bit, but in any area of life, things are eased if you get to grips with the bureaucracy and make your own waves. Luckily, MS doesn’t seem to have impaired me mentally (though those who disagree with my ramblings may not concur), so I’ve been able to steer my own boat.

I received a surprise letter to see my neurologist — it was delivered last Saturday, and I got round to opening it on Sunday. It was an appointment to see him the following Tuesday. I thought it might be a mistake, so I checked with hospital appointments on Monday and was told everything was correct. That day, my wife’s back went into a spasm. So, I found myself clambering in and out of the house, as putting ramps down was impossible. Luckily, the ferocious heat wave we’ve been enduring backed off a bit, and consequently, my body functioned better.

I’ve been a patient at Charing Cross Hospital for about eight years. To those of you who don’t know the geography of London, Charing Cross is one of our mainline train stations — and the hospital is nowhere near it. It’s on a different side of the Thames and in a completely different part of town. The London-set John Wayne movie “Brannigan” (1975) has an infamous car-chase scene that Londoners know would be physically impossible in reality. The location of Charing Cross Hospital fits right in. But I digress.

What did surprise me was that all of the elevators were working. At the hospital’s core is a tower block. I’ve never known all four public elevators to be working. (There are others around the side of the building that those in wheelchairs can summon. No one tells you, but the information gets shared by us regular patients.) The auguries were good.

I’d seen my neurologist only three weeks ago. He’d offered me the chemotherapy drug mitoxantrone. Having been through Lemtrada (alemtuzumab), which derives from a chemo drug, I wasn’t keen. The side effects were horrendous. I raised the possibility of trying Ocrevus, but the National Institute for Health and Care Excellence (NICE) hadn’t agreed to its use by the NHS. Mitoxantrone was my only choice.

The very next day after that appointment, Ocrevus was signed off by NICE. My wife heard about it on the in-depth morning BBC Radio news program “Today.” I hit the net, and the news was so new I couldn’t find an easy reference. In the end, I procured a raw source from NICE itself. I immediately attached it to an email and sent it to my neurologist. I don’t have his email, but I had the regular MS patient address at the hospital. Then, I did some old journo sleuthing, worked out who his secretary was, and deduced that email address. Of course, email didn’t exist when I was a journo, but the methodology of this sort of problem-solving is an endlessly applicable tool.

In truth, I’d forgotten all about my email. But that was why my neurologist had called me back so suddenly. Was I still interested in Ocrevus? I was. I’m now one of the first patients at the hospital on the list. Despite England being out of this World Cup, I’m exceedingly happy.

Stick your oar in and make a splash!

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