Just about everybody knows the punchline to the Proclaimers classic hit single “I’m Gonna Be” and that song got me off my backside this week to be able to write this blog, featuring that song, tonight. On July 1st, I completed the 25,000 miles that I set out to do almost three years ago. Today, as we home on in the end of the month, I’ve done 500 more.
But that’s not really the point. The point is that the journey goes on, a bit like it never ended and by this time next month, any total with 25 on the front will be history.
And talking of the fight going on, today our charitable beneficiary, Solving Kids Cancer, put out a press release concerning a decision taken by the National Institute for Health and Care Excellence (NICE) with regard to the anti-GD2 antibody therapy dinutuximab. Here is the relevant text of the press release:
The decision to deny potentially life-saving treatment from children with a rare form of cancer could condemn many children to outdated treatment options and a reduced chance of survival.
As a charity representing families affected by neuroblastoma, the announcement that NICE has decided to deny dinutuximab, the only treatment approved specifically for neuroblastoma, to children with this aggressive childhood cancer has profound implications. This is not an issue of seeking to buy extra time for children with neuroblastoma. Whilst dinutuximab is not a cure for all, it has been shown to significantly increase the chance of survival and many children are alive today and living a full life because of this medication. The decision to refuse this drug for children in the UK is at odds with the many countries in Europe and North America where this therapy is the standard treatment for neuroblastoma and risks pushing back advances in treatment to 2009 in the UK.
Fewer than 100 children are diagnosed in the UK each year, of which only a third would benefit from this antibody therapy. The cost to the NHS of giving children a greater chance of survival and a normal life is therefore very small, but British children diagnosed with this cancer in future would only be able to access specialised treatment by taking part in a clinical trial. This is wholly unethical when an effective drug is approved. The only other option open to parents will be to raise in excess of £500,000 to take their child abroad for treatment.
The term ‘a matter of life and death’ is overused, but the denial of this therapy for NHS patients will have very significant implications for children diagnosed with this disease. We are committed to working closely with families, health bodies, clinicians and other childhood cancer charities to address the implications of this decision and will continue to fight for access to the best possible care for children affected by neuroblastoma in the UK.
I am not a medical person, although I interact with the NICE guidelines on a daily basis across a range of disease areas in my data research work. I am merely an activist and a fundraiser. But what I am reading is that this is a drug that is licensed in the USA and licensed in much of Europe. Therefore, the decision to bar its use on the NHS in the United Kingdom seems bizarre in the extreme. Indeed, if I may paraphrase what one commentator said today over the Government’s decision to procrastinate further on the Hinkley Point nuclear project, the NICE announcement is anything but nice: it’s plainly bonkers.
So instead of dangerously ill kids getting state of the art treatment on the NHS in this country, families are going to have to continue going cap in hand to the general public in order to raise enormous sums of money in order to displace their families abroad. Bonkers indeed.
And so to matters on two wheels. I’ve kind of settled into my new regime of twenty miles (and a bit) a day, which basically means I can blast it, eyeballs out, for about an hour and a half every day. One fifty a week’s a decent return for an old guy retired from the big stuff and it still looks like I can turn in a thousand feet of climbing every day too. Round these parts, yer cannae move without climbing the hills so the only major decision to be made when I leave the house is which direction? It might seem a bit odd, but I never ever leave the house with a route 100% fixed in my mind: it’s 60% at best. Everything is made up as I go along. The only thing that matters is fighting the wind by the easiest route (ie coming home with it at my back) and bagging twenty miles. Everything else is suck it and see, taking each wee country lane on its merits. But today was ridiculous: 27 miles in a big circuit yet the wind appeared to be in my face for at least 25 of them. How the hell does that work? Wasnae happy.
The global club on Strava gained an old Highland March mate of mine this week: SatNav from Landan, except that he lives in Manchester these days, and no longer works for Reuters. He bagged 363 miles last week, which included a 172 in one go. His adventures meant that we bagged a grand between us on the week and our team total now exceeds 6K. People may say we’re never gonna do this. So what? We’re out there, turning those wheels, and once we start banging in a thousand miles a week, week in and week out, it’s only gonna take us a thousand weeks to get the job done. Actually we’ll do it in half that time, you wait and see.
The only other major thing of note that’s happened this week is the arrival of the LCFN / Eileidh’s Journey wristbands. I ordered them just over a week ago from a company down south (for our overseas readers, that means somewhere down in England) and I got an email on Monday morning advising me that the bands had just left the factory: in China. Because I had a tracking number, I was like a kid on the Santa site every few hours: are they here yet, are they here yet? Well just over 48 hours later, they were here. TNT did a fabulous job. Already the consignment has been split up and fifty are currently sitting up the road, 200 miles away at a top secret location in Elgin awaiting collection on Gail’s behalf. I’ve also sold two myself, so including the one I’m wearing, I’ve trousered some cash and as soon as this blog is up on the LCFN site, that money will be going into Eileidh’s Just Giving fund. I’ve decided that the best way of keeping track of everything is to create a spreadsheet with one row for every wristband. Then I can comment on who’s holding what stock, who’s donated what against each band, and critically, has the money been Just Gived yet. It’s my intention that every row on the spreadsheet should tally to an entry in Eileidh’s audit trail. At the same time, we need to hold enough of the kitty back to buy the next batch. At the end of the day, someone has got to pick up the tab. I paid for the first batch from my own pocket but it’s my intention that they should be self financing thereafter, if there’s a demand, that is. If it turns out that we cannae shift the whole of the first batch, then every last penny will go to Eileidh and the bands will become collectors’ items.
What I really need is have people act as agents on my behalf: say someone took ten, then they could sell those just like people sell books of raffle tickets at Christmas. It’s important that the bands sell because on the back of the not nice NICE decision today, kids like Eileidh are going to continue having to go abroad to maximise their chances of long term survival.
But I’ll leave you this week with some slightly re-arranged lyrics: have a right good sing song…
When I make it, well, I know I’m gonna be
I’m gonna be the man who makes it just for you
When I go out, yeah, I know I’m gonna be
I’m gonna be the man who rides along for you
If I get drunk, well, I know I’m gonna be
I’m gonna be the man who gets drunk honouring you
And if I haver, hey, I know I’m gonna be
I’m gonna be the man who’s havering for you
But I would ride five hundred miles
And I would ride five hundred more
Just to be the man who rode many thousand miles
To fall off at your door
Ride2Cure Neuroblastoma 