Monday, 17 September 2012

THE PATIENT VOICE MUST BE HEARD

This week we have a guest blogger. Stuart Watson, long term supporter of the charity who has direct personal experience of prostate cancer, has agreed to talk about his views on the Government’s proposed new approach to drug pricing. Many thanks Stuart!

THE PATIENT VOICE MUST BE HEARD

If there’s one thing I learnt as a patient representative at two different National Institute of Health and Clinical Excellence (NICE) events, it is this: the patient’s voice is there, but it is a muted voice that is not often heard above the roar of medical, health-economical and professional voices. I was there when NICE gave abiraterone the big ‘no’ in January 2012. Remember it? NICE judged that, despite abiraterone obviously being a ‘good’ drug for its purpose, the benefits to patients were apparently too slight to represent good value for money for the NHS. Two of us ‘patient voices’ were there to say how very valuable it was to people who needed it. But, in short, the financial cost of abiraterone seemed to be all that mattered. (Of course NICE - and its equivalents in Scotland and Northern Ireland - reached the right decision about abiraterone a few months later, but that’s another story!)

But there’s the rub: how can you put a price on the benefits of having your life extended, even for a few months?  Or getting relief from most of the dreadful side effects of your current treatment, to say nothing of the ease of self-administering the drug rather than having to make regular visits to hospital? And how do you get matters of ‘value’ into considerations about the pricing of drugs and treatments in the NHS where most of the arguments seem to be purely about the financial cost of the drug?

In an attempt to ensure that new drugs and treatments do get to the people who need them, and that the NHS gets value for money, the Westminster Government is consulting about how medicines are priced throughout the UK. The new system also aims to encourage pharmaceutical companies to develop new drugs, particularly for conditions where no treatments are currently available.  

Value-based Pricing’ – as this proposed new system is to be called - means that the Government will agree with drug manufacturers in advance what constitutes a reasonable cost to the NHS for a new drug. This will be based upon its effectiveness as measured by gold-standard medical research, and its value to the individual and society as a whole as measured by, well, something as yet undetermined! The new system accepts that some drugs that offer the most to patients (in terms of life extension or improved quality of life, for example), may well be very expensive, but some will be less so.

It’s not at all clear, at the moment, exactly how all this will work - but the new system will be implemented in 2014. And although it is difficult to disagree with the premise of these changes I agree with Prostate Cancer UK and other cancer charities that the Government has not yet done enough to ensure ‘the patient voice’ has been heard in the development of this  new system.

In order to influence the development of the new system from a patient perspective, Prostate Cancer UK is leading a coalition of like-minded organisations who fight the corner of people whose lives have been touched by cancers of all kinds. It has commissioned research to help understand what people affected by cancer think the most important issues are, and has vowed to collate and present them to the Government to ensure their voice is heard loud and clear.

We ‘patients’ must have a voice in shaping the new regime – and this Prostate Cancer UK spearheaded initiative is ideally placed to speak on our behalf.  But it’s no use giving the charities the right to speak on our behalf if we don’t tell them what to say. And it’s no use whispering, we need to shout!

Despite having the very best of intentions there is real danger that professionals in all fields speak about us rather than for us, and speak to us rather than with us (never mind the families, loved ones and carers upon whom we so often depend). That will continue to happen if we don’t find our voice and speak up, boldly and unashamedly.

But we need your help. The very least you can do is complete Prostate Cancer UK’s online survey. It will provide evidence and some insight into what we consider as the definition of ‘value’. And do bring the survey to the attention of anyone else you know whose life has been touched by cancer, of any kind.

There must be some basic things that we all value and look for in the drugs and treatments we receive. It may not be a long list but – provided we take the time to collate it - it will be a very powerful one that cannot be ignored. And it needs to be composed by us, not for us.

So speak up. Loudly. Now.

Stuart Watson

Thursday, 6 September 2012

A season saving men’s lives

As a big fan of American sports, if you talk to me about ‘football’ you’ll probably get me thinking and talking about touchdowns, quarter backs and Superbowls. But, as an Aberdonian by birth and—much to my grandfather’s chagrin—a Londoner by accent, I was brought up in a country where Saturdays stand still to watch ‘the beautiful game’. I love the passion, excitement and, to use a very American phrase, the ‘emotional rollercoaster’ that goes hand in hand with ‘soccer’ (OK, ‘football’ from now on!). I am an adopted Norwich City fan and, whenever I confess to this, the first thing people remind you of is not our Goss’s wonder goal against Bayern Munich but a certain TV cook shouting ‘Where Are You?’ at a packed stadium. Now that was passion!

The reason I am musing about this is that, as part of the launch of our partnership with The Football League, bloggers from around the country are discussing their club’s top 5 number 9s (and their one to forget) over the years. But I am not writing this blog simply as an attempt to jump on this number 9 bandwagon (whilst re-declaring my love of NFL). Nor were these bloggers asked to write about this just for bit of nostalgic banter. The cold hard fact is that one in nine men will develop prostate cancer in their lifetime - a fact we really need to hit home and to get people to think about. One in nine – that’s a truly shocking figure. That’s more than one man in every football team.

Prostate Cancer UK volunteer, Dave Annand, is one of those one in nine. Dave is supporting us throughout the season, and he and former England and AC Milan forward, Luther Blissett, helped us kick off the partnership last week. By working with people like them as well as supporters, club bloggers and The Football League we hope not only to raise awareness of this disease throughout the country but also to raise the funds we need to address the long term challenges that still exist around prostate cancer.

If we are to reach a stage in the near future where we have the best possible diagnostic tools and treatment for this—the most common cancer in men—then we need to start investing much more heavily in a broad research programme that speeds up our learning about the disease and the discovery of new treatments. Furthermore we need to ramp up our investment in a specialist community nurse programme and continue campaigning for policy change to ensure that each of the 40,000 men diagnosed with prostate cancer every year throughout the UK have the best support and treatment possible. Every penny raised through partnerships such as this helps take us forward in achieving these important goals for men.

So, The Football League partnership has got off to a flying start, and it has brought home to me the simple fact that every man is an individual, and can be helped, have his memory jogged and his thoughts provoked by just one conversation. If, throughout the season, and in all that we do, we can get people thinking and talking about prostate cancer, then we will be well on our way to achieving our goal.

The possibilities of our partnership with the Football League brings to mind the most famous quote from one of Britain’s greatest managers, the legendary Scot, Bill Shankly (which was para-phrased from the slightly less legendary American Football coach, Henry Russell Sanders): “Some people believe football is a matter of life and death, I am very disappointed with that attitude. I can assure you it is much, much more important than that.” Let’s hope our partnership with The Football League provides this famous quote with a new significance, and that the 2012-13 season will not just be about the football—but about something much, much more important than that.

Here’s to 2012-13 being a season saving men’s lives.