We were about to go large on the NHS's continued lack of action overs the positive results of STAMPEDE. All our campaigning machinery was set to whirl into motion. And then a sudden U-turn left us both delighted and eager to prevent similar treatments from experiencing such delays in the future, writes Karen Stalbow.

9 Dec 2015

We wanted every man who would benefit to get access to a new use of the cost-effective chemotherapy treatment docetaxel. A recent clinical trial had shown an unprecedented 22-month survival benefit just from taking this drug a bit earlier in the treatment pathway, and we weren't going to take the ‘no’ we got from NHS England as an answer.

And thanks to all of you who shared your experience with us, we knew we had an army of men on our side. Not least Nigel, who shared his story and helped us see just how much heartache the lack of clear advice to health professionals and men was causing.

But then we got an unexpected phone call late one Friday afternoon. It was NHS England on the line. They’d had a change of heart, and they wanted to work with us to get this treatment to men. We couldn’t believe it. It was a complete U-turn; almost as if they’d somehow sensed we were about to launch our public attack.

This is a dream situation for influencers like us. It proves our influencing mettle. All the meetings we set with decision-makers, all the arguments we had with them, the hundreds of emails we sent to leading officials had finally paid off. We were persistent in our badgering, and we had succeeded.

New policy for local commissioners now planned

So we've put our campaigning machinery on hold for the time being, while we work together with NHS England and the mighty research team responsible for discovering that docetaxel chemotherapy is much, much more effective if prescribed earlier and at the same time as hormone therapy. We’re collaborating to develop a commissioning policy that will soon be sent to all local commissioners.

We can’t say for certain when ‘soon’ will be. And we know that, sadly, it won’t be soon enough for everyone. In an ideal world, a treatment like this would be ready to go the very minute the research was presented. But there are checks that NHS England have to make to ensure that the research is as effective as its research team thinks it is, which means they – and we – have to wait for peer review and publication. So any delays at this stage are very frustrating.

Holding fire, not putting away the guns

What we can say though is that for the first time, this treatment will reach men, closer to publication than we ever thought possible.

Having said that, it isn't a done deal until the commissioning paper is out there and every local commissioner is making this treatment available to the men who could benefit from it. So we’ve held our fire, not put away the guns.

We will not stand for any delays from NHS England, and will need men like you to back us when we challenge them to speed up.

But most importantly we’ll need you to put pressure on any local commissioners who fail to get this treatment to men. So we’re calling on you all to get ready. We won’t be able to get all commissioners funding this treatment without you. We will need you to demand what’s rightfully yours - a life saving treatment for advanced prostate cancer.

We won’t stop until every man who will benefit from it gets this treatment.

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