Tuesday, 27 November 2012

Guest blog: My moustache is almost in full bloom

This week we have a guest blogger. Patrick Taggart, long term supporter of Prostate Cancer UK and veteran Mo Bro who has a personal experience of prostate cancer, talks about his Movember journey.

My moustache is almost in full bloom

Friends and acquaintances are giving me funny looks. Nothing new there, but this time at least it’s all in a good cause. My philtrum is getting fuzzy. In other words, I’m growing a moustache for Movember. I’m being joined by Mo Bros (and Mo Sistas) all over the world in a campaign to raise vital funds and awareness for men’s health, specifically prostate and testicular cancers.

Men are notoriously reluctant to address important health issues. Back in 2004 I, like many men, was not in the habit of visiting my GP. In fact, I didn’t even know his name. Only after I had accumulated an impressive array of ailments – among them a dodgy back, sore knees and difficulty sleeping because of the need to keep getting up to pee – did I get round to visiting him. My first surprise, when I walked in, was that ‘he’ was a ‘she’ – which pretty much summed up how up to speed I was with my health care arrangements! My second surprise was that she was dismissive of most of my ailments but was very interested in my frequent night-time visits to the loo. She referred me to a urologist. Had she not done so, my prostate cancer might have gone undiagnosed for a long time.

Movember is doing a wonderful job of raising the profile of prostate and testicular cancers in the media. On an inter-personal level, the sprouting of a moustache on a normally fuzz-free face provides a great opener for a conversation about men’s health. I hope that, as a result of Movember, more men with symptoms of prostate trouble will understand the significance of those symptoms and visit their GP without delay.   
    
Movember also raises much-needed funds. A large proportion of these funds will go towards research.  As someone who has lived through diagnosis and treatment for prostate cancer, the need for research is very obvious to me.

Despite the prompt action of my GP in 2004 my cancer evaded detection until 2009. I have no complaints about my urologist. He monitored my rising PSA closely and carried out three prostate biopsies, all without detecting the tumour. It was only after the third negative biopsy, with my PSA still rising, that he found the tumour by means of a trans-urethral resection (TURP) of the prostate.

Thankfully, I appear to be cancer-free today, but some men aren’t so lucky; a delayed diagnosis could mean a shortened life! Research to improve diagnostic methods is vital.

After diagnosis, my treatment consisted of a radical prostatectomy in 2009 followed by salvage radiotherapy in early 2011. The treatments were successful, but I did not emerge unscathed. It’s wonderful to be alive but, given the choice, I would - of course - prefer not to have been left with urinary, bowel and sexual problems. There are novel treatments promising fewer side-effects, but more research is needed to confirm their long-term efficacy.  Better diagnostics and finding effective treatments with fewer side-effects are just two of many priority research areas.
  
My moustache is almost in full bloom but, sadly, I look nothing like Tom Selleck and women are not throwing themselves at me. I knew I would look completely ridiculous, having taken part in Movember last year. But looking ridiculous is a small price to pay for being able to participate in such a worthwhile campaign.

Patrick Taggart.

Tuesday, 13 November 2012

Putting patients first: why people affected by cancer should be involved in value-based pricing


I may often sound like a broken record on this blog when it comes to challenging the health inequalities facing men in the UK, but accessing effective drugs on the NHS is one issue that affects us all.

The current system of drug pricing and evaluation has many benefits, including keeping drug prices relatively low compared to other countries but it does leave a lot to be desired. We know, for example, that the UK is often slower than other countries at taking up new cancer medicines. We also know that appraisal bodies such as the National Institute for Health and Clinical Excellence (NICE) and the Scottish Medicines Consortium (SMC) focus heavily on the cost-effectiveness of drugs. I have no problem with drugs being rejected because they aren’t clinical effective, – why should the NHS pay for drugs that don’t work? I recognise the current financial restraints the NHS is under and have personal experience of managing ever decreasing NHS budgets, but new treatments for all diseases will continue to be developed and we must have provision to be able to adopt them in the UK. If we are to have a world-class NHS and the best outcomes for patients, we need to invest in the most effective treatments.

Currently, under the Pharmaceutical Price Regulation Scheme (a policy which has been in place since 1957), drug companies set the original price of a drug and restrictions are placed on price increases and how much profit they can make from selling the drug to the NHS. Once the price is set, drugs are assessed (by NICE, the SMC or the All Wales Medicines Strategy Group) for their clinical and cost-effectiveness before being approved or rejected for use on the NHS.

From 2014 all new branded drugs will be subject to a new process called value-based pricing, which will involve setting prices on the perceived value of a drug rather than its actual cost. This change represents an opportunity to move away from an unwieldy system that delays access to life-extending drugs, results in inequalities in access to new medicines and relies on safety nets and contingency plans such as the Cancer Drug Fund in England. This is an exciting prospect and we welcome the principles behind the Government’s proposals, but we must ensure the switch to value-based pricing leads to a vast improvement of the current system, or it will simply be a waste of time and money.

Although value-based pricing is scheduled to be introduced in 2014 (just 14 months away), not enough has been done to consult the most important group of all: patients. Having identified this rather worrying gap in the development of value-based pricing, Prostate Cancer UK pledged to bridge it, and commissioned a report detailing the views of people affected by cancer. Who better to help develop the system of drug evaluation and help define value than the very men and women for whom the process is designed to benefit?

Our reportValue-based pricing: Getting it rightfor people with cancerpublished today in partnership with thirteen other leading cancer charities, shows that people affected by cancer want to have an equal role in designing the value-based pricing system. Their views and opinions also highlight the need for a new method of involving patients in the process of drug appraisals to ensure their views can be heard sufficiently.

In addition to placing a high value on drugs which offer clear clinical benefits, our research shows that people value drugs which provide quality of life improvements such as reducing pain and fatigue. People affected by cancer have also expressed their belief that drugs which give people nearing the end of their lives precious extra time should be given a high value. The report also identifies the increasing worry that focusing on the value of the societal benefits of drugs – such as getting people back to work – could disadvantage many people with cancer who may have already retired, are too unwell to ever re-enter the workforce or are children or young people still in education or training.  

The views of people affected by cancer should be integral to determining how value-based pricing will work. I have had an initial conversation on our report with the Chief Executive of the ABPI and we will be going to present the key findings at their HQ next week.  We have also sent copies of our report to  the Department of Health I and look forward to hearing their views in the near future. I’ll let you know what they say.

Thursday, 1 November 2012

Time to welcome back a furry friend

I can hardly believe that it is time to welcome back a furry friend (or should that be fiend) back into my life. Today is 1st Movember and I will of course be fully participating. Last year I was a ‘Mo virgin’ – unaware how it would look or feel to be the ‘proud’ owner of a top lip warmer. Well now I am a ‘Mo pro’ I enter this most important month of the year with the certainty that my facial hair will be ginger (although I prefer to think of it as ‘strawberry blond’). However, the main source of my excited anticipation is the knowledge that I will be taking part in something really special that genuinely brings together Mo Bros and Mo Sistas to make a real difference for the health of men.

I cannot quite believe it has been a whole year – so much has happened. The charity has become Prostate Cancer UK and has a new look and feel as well as creating a unified voice through our merger with Prostate Action. It is our partnership with Movember that has enabled us to drive these changes forward and to be clear about our ambitious plans for the future that underpin our recently published MANifesto. We are also entering Movember with new partnerships with the Football League and Royal Mail, both of which will lead to more Mo Bros raising money and spreading the vital messages about why we are all looking a bit daft (or very daft in my case).

This year, the campaign is all about ‘Movember and Sons’ and it has such a strong resonance with everything that Prostate Cancer UK is all about. Prostate cancer is currently the most common cancer in men and it will not be many years before it is the most common of all cancers. This is why in our MANifesto we have committed to significantly increasing investment into both supporting men with the disease and developing research to identify better forms of diagnosis and treatment. These commitments are in no small part down to the fund raising efforts of Mo Bros and Mo Sistas.

As well as raising money, Movember is all about promoting awareness of prostate cancer and other men’s health issues. Simply by wearing their Mo with pride, Mo Bros are responsible for millions of conversations about men’s health in the UK alone. When you consider that Movember is a truly global campaign that translates to billions of conversations. That is why is so fantastic that this year's campaign recognises the importance of those conversations happening across generations. Talking to your dad, uncle or boss has real potential to save lives. This is also exactly why the third theme of our MANifesto is to lead change. Change will not happen until we start talking about prostate cancer and create a genuine men’s health movement that is driven by our belief that it is an issue that has been neglected for too long and it is time to be clear that men deserve better.

I am looking forward to the month ahead because Movember is fun. I am looking forward to it because it is great to know that you are part of something big that gets so many people taking notice of such an important issue. I am even looking forward to it because I have missed my Mo, it will be good to have him back.

Wednesday, 24 October 2012

MANifestation of change

It's been a busy time at Prostate Cancer UK. Many really exciting changes have been happening in quick succession, all in the name of raising the profile of prostate diseases and ensuring that men across the UK are given a much better level of support and hope for the future. Hot on the heels of the launch of our new brand and identity we were delighted to complete a merger with Prostate Action, which saw us pool our resources and become a more unified voice in the battle against prostate cancer and prostate disease. 

These changes have been necessary as part of our mission to get prostate cancer higher up the political, research and media agendas – but we are acutely aware they are not enough in and of themselves. We need long term plans to bring about real change for men with all prostate diseases, starting now. That’s where our MANifesto comes in.

At its launch on the 4th October, I described our MANifesto as “the most significant and ambitious plan in the history of men’s health.” A bold claim? Perhaps. But one I am proud to have made and stand by absolutely. I hope you’ll agree with my assessment.

The MANifesto is bursting with new ideas and a determination to move up a gear in the battle against prostate cancer and prostate diseases. I can’t possibly do justice to the full content of the MANifesto in this short blog, so if you get a moment please do read it yourself to get a feel for the scale of our ambitions for men.

However there are three key themes that form the backbone of our aspiration and will shape all of our activity over the coming years:

Firstly - thanks to the support of our friends and partners at The Movember Foundation - we are tripling our research spend to £25 million over the next three years, making us the largest single funder of prostate cancer research in the UK. The main focus of this record spend will be to find a more accurate diagnostic test, to establish a means of distinguishing aggressive from non-aggressive tumours and to develop new and less invasive treatment options. This unholy trinity of prostate cancer questions cannot continue to go unanswered. Cracking them is what our historic investment is all about.

Secondly, as well as finding answers for the future, we will do much more to support the millions of men who are living with prostate diseases right now. We will be significantly increasing our investment into support services throughout the country, including innovations to reach men in their communities and provide help to men when and where they need it. This includes making new information available to men, including the boosting of our unique telephone and email helpline services.

Thirdly, we are going to invest in raising our voice, in order to enable us to lead significant change. We already have a distinctive new identity created to make us stand out and be noticed, now we are planning our first ever mass media communications campaign. The campaign will be launched in the coming months and the broad aim is simple – to wake up the nation: to change behaviour amongst the population, donors, supporters, healthcare professionals, and politicians - because men deserve better.

These three areas merely touch the surface of our ambitious programme for change, but it’s an ambitious programme from which we cannot shrink. To do so would not just be a disservice to men who have been overlooked and neglected for far too long. It would be a disservice to the quarter of a million mo bros and mo sistas who raised a staggering £15 million for the cause last year. It would be a disservice to the posties at Royal Mail who chose us as their charity partner. It would be a disservice to staff at The Football League, its clubs and supporters who voted to back us for the 2012/13 season. It would be a disservice to the London Marathon runners who teamed up with Breast Cancer Care to raise over £1million. In short, it would be a disservice to everyone who does so much for Prostate Cancer UK for the sake of men affected by prostate cancer and prostate disease.

I firmly believe that the publication of our MANifesto at the beginning of this month marked a new dawn for men in this country. But it’s a dawn that sees us still in the foothills of our climb up a mountain. I am confident we are now fully equipped for the trek that lies ahead. Working together, with you, I am equally confident we can reach the summit where lives are no longer limited by prostate cancer or prostate disease.

So please read it, support it, share it and join us on the journey that lies ahead.

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.

Friday, 10 August 2012

A Sentimental Journey

I am going to Glasgow next week to spend time with our Scotland team. It is always something of a sentimental journey for me. Glasgow is where my career, and links to men’s health, all began.

Back when I was a rookie nurse (complete with ponytail would you believe), I spent many of my training placements on the male wards of some of the big city hospitals in the west end of Glasgow. Many of the men that I encountered there were ‘traditional’ Glaswegians, fun loving, hard living, football-obsessed men who loved to rib the lanky student nurse with a daft English accent and a season ticket at Partick Thistle (I got even more grief for my adopted football club than I did for hairstyle). The men that I met were not given to feeling sorry for themselves and it is seeing the impact that prostate cancer had on them that has had the most lasting impact on me.

I learnt a great deal from those men (including lots of new swear words) and often the male wards were places of great humour and comradeship. However, there are other aspects of caring for those men that will always stay with me. As I travel to Scotland I will be thinking about one man in particular. Danny had never really experienced being ill before and certainly was not used to talking about his health, he took part in the normal ward banter but more powerful than words was the fear in his eyes, and that look has stayed with me. It was a fear of being sick, a fear of dying and in many ways most importantly, a fear of having all the things that he felt defined him as a man come crashing down to the floor. That look in his eyes stayed with me throughout my career from working in A&E departments, then as a manager in the NHS and I remember it now especially at Prostate Cancer UK. That man, however tough he was beyond that hospital, was scared. He was not sure what would happen to him, and I am pretty sure he would not have been consulted then by a system which would have thought it knew best for him.

Things may have changed since then, or have they? Men may have more say in their treatment options, but men’s health is still not where it needs to be. I am in Scotland to be there for the planned announcement by the Scottish Medicines Consortium (SMC) about whether abiraterone will become available to Scottish men. It is the last of the four nations to declare its decision (following a review of its earlier announcement not to make it available), and the last to hold out giving the drug, so far, to the men who need it. We campaigned successfully to make it available on the NHS in England and Wales. Northern Ireland followed suit last week. It can’t be right that men in Scotland are denied the drug, when those a few miles down the road can enjoy its benefits, which are as fundamental as extending life and reducing pain when other options have expired.

The case of George Fraser is a perfect illustration of this injustice. Prior to accessing abiraterone George had been bed ridden on high doses of morphine, 24 hours a day. He couldn’t walk, or even eat. But last week he strolled into our Glasgow office to be interviewed by STV as part of our campaign to have the drug approved in Scotland. He was able to do so because he is now taking abiraterone. However, because he lives in Scotland, George had to cash his pension in early and has to pay thousands of pounds himself every month to access the drug. I may not have been able to do anything to change things for the man on the ward all those years ago, but as an organisation raising its voice for men with this disease, Prostate Cancer UK is standing up to do something for men like George and Danny now, whatever their backgrounds, wherever they live.

We are so grateful to those who have backed our campaign to make abiraterone available to all men who need this drug, and continue to do so. The Scottish media has devoted many column inches to the issue, and I am sure they are poised for the announcement on Monday. All eyes will certainly be on the SMC and my thoughts will be with Danny.

Friday, 13 July 2012

A Transatlantic screening debate

Much as US culture eventually wings its way over to the UK, and extends a huge influence over everything from gastronomy (a personal thank you for cheeseburgers and fries) to advertising and television, there are some areas on which we differ.

The approach to the PSA test, still the cornerstone of prostate cancer diagnosis across the globe, for want of a more reliable test, was until recently one of these points of difference. The USA has traditionally used the test as the basis of a screening programme.

The UK, taking a more cautious approach in the face of evidence of the risks of over-treatment as a result of screening, has encouraged men to make a choice through discussion with their GP about whether the test is right for them.

Now, the US is changing tack, which has sparked polarised debate in the US. The USPSTF* has revised its position even though the latest European trial results have strengthened the argument for screening by showing that its impact on reducing deaths from the disease may be higher than originally thought. The powerful pro-screening lobby, encompassing a broad range of prominent politicians and clinicians, is now occupying defensive territory - and making a lot of noise about the Task Force’s decision.

Interestingly, it is a position which isn’t binding. Patients and clinicians are asking, very often through the US media, ‘where do we go from here?’. Some doctors are adamant they will continue to screen their patients, with others less certain how to proceed. Barack Obama’s Health Secretary, Kathleen Sebelius, prompted by the anger generated by the USPSTF’s recommendation, has even gone as far as to put out a statement distancing the US Government from the Task Force to underline the fact that the body ‘does not set health policy’. This resulting furore shows how difficult it is to have this debate in the US public arena, given the very strong emotions involved. Emotive stories of people who believe they have benefitted from screening, are very powerful, and cloud even research-based statistics.

From a UK perspective, we can only agree with the Task Force’s decision, mirroring as it does our position and given the clear drawbacks of population-wide screening. Yet the unambiguous line here, even if it is controversial in some quarters, has its drawbacks. Debate around the test is at best sporadic, rearing its head with new research or a celebrity diagnosis. The interim silence can read as a quiet acceptance of the status quo. Men being expected to make a decision themselves around a flawed test, which could have far-reaching consequences for their life and health, can hardly be desirable, especially when we know some GPs have a bias. At least the divergent view points in the US, and the prominence of the debate, is showing that men deserve better. The volume is good. Maybe the discourse needs to be different - should it not be around research into a new generation test. One, which does not run the risk of ending a man’s sex life and causing incontinence unnecessarily. This is where our own research strategy is leading.

I am using this American-themed post to introduce a link to Dan Zenka’s blog. It chronicles not only his reaction to emerging prostate cancer-related issues, from the perspective of his role as Senior Vice President of the Prostate Cancer Foundation, but also his own battle with the disease. We met recently at a conference hosted by our partner Movember in ‘The States’, looking at how we can pool resource and expertise to channel resource effectively into global research priorities. Linking our blogs mirrors this intention to close boundaries. It is a small way of sparking debate and dialogue from a more universal perspective. That is exactly what we need to tackle this disease, a concerted, universal approach to make sure men with prostate cancer get what they need. A new test is the best starting point I can think of.

*US Preventive Services Task Force - an independent group of experts that make recommendations about services such as screening, counselling and preventive medications, in the USA.

Sunday, 1 July 2012

Shaken - And Stirred


Final day, and I think 'Miss Funnypenny' and I would call this mission accomplished as we head back to Britain. As well as smashing our £100,000 fundraising target, alongside Keyline Builders Merchants - we have woken up thousands of men to this disease.

We all made the 10,000 foot assault on Schilthorn, in our 007 finery. There have been some real Bond moments on the way, alpine descents (albeit by cable car, not parachute), cars 'chasing' around mountain bends and the odd dry Martini. There was even a bikini moment, which will clearly rank alongside those immortalised by Ursula Andress and Halle Berry, as my 'Bond Girl' stepped into a two piece and emerged from a lake. Well, it certainly gave the locals an image to remember.

All of this has been done not on 'Her Majesty's Service', but in the name of fighting prostate cancer. There is no Dr No or Goldfinger in this particular adventure. Our 'villain' is a disease which claims way to many lives and the injustice which surrounds it.

Our first mission as Prostate Cancer UK has really crystalised for me why we needed to be more focussed, increase our ambition and raise our voice. Put simply, men deserve better.

The energy Andrew Harrison, CEO of Keyline, and his team have put into this endeavour, which deserves a massive thank you from me, hints at a groundswell of support for this notion, and a willingness to do something about it. Men's health needs to take centre stage, and there is a role to play in bringing all men together to achieve this.

I will be back at 'HQ' this week working with the team to really push those ambitions forward.

In the meantime, thank you to everyone who has sponsored us, a well done to my lovely Bond Girl (I could not have done it without 'her') and, of course, to Keyline Builders Merchants.

I would like to make a final plea for sponsorship. The Thunderball Rally will make a real difference to our real mission.

http://uk.virginmoneygiving.com/team/thunderball

Friday, 29 June 2012

From France With Love

The name’s Bond, James Bond. I guess every man wants to say that at least once, and I am quite taken with my new persona. As my very own ‘Bond Girl’ and I passed through five countries (Britain, France, Belgium, Luxemburg and back to France for the particular) in one day yesterday, it certainly felt like we were on something of a mission. And, in a way, that is exactly what we are on – a delicate assignment to get the message out there about prostate cancer. As well as raising funds, hurtling across Europe (400 miles yesterday, complete with a thunderstorm) in a car branded with our new identity, has been a real talking point. Lots of people (no doubt also intrigued by the gold cat-suit of my companion) have stopped to ask what the challenge is about.


The Thunderball Rally has pulled everyone together, in the fight against prostate cancer. Keyline Builders Merchants, our partner, has pulled out all the stops to make this a success. There have been a few road-side casualties as some of the Bond-style cars struggled with the journey, but everyone pitched in to make sure no one was left behind. There is a real sense of camaraderie, and a sense of doing something constructive for men with prostate cancer. I have been struck by the way Keyline has taken this cause to its heart, not only aiming to raise an ambitious £100,000, but ensuring that their largely-male workforce is aware, and stands up together to do more to fight this disease. There is a real formula for success in there – which we need to replicate on a much broader scale.

Back behind the wheel...Switzerland next stop. Not before another night in my tent. Yes tent, (not sure the real Bond would have fancied that), a pop up one I could not assemble sadly. Q would not be proud.

Please don't forget to sponsor us.

http://uk.virginmoneygiving.com/team/thunderball

Check back tomorrow as we reach the summit of our mission.

Thursday, 28 June 2012

Making A New Mark On Prostate Cancer

It has been quite a week in the world of prostate cancer, and for me, personally, as a Chief Executive, in the arena of men's health.

The eagle-eyed will have spotted that we have changed our name and identity. This was a very concious decision to reflect more fully, and with more impact and weight, our growing ambition to change the fortunes of men with prostate cancer once and for all. Reinventing ourselves as a more bold, direct and open organisation is a symbol of a change in stance and direction - and reflective of a new urgency to do more.


We will be putting in place more innovative services to support the quarter of a million men living with prostate cancer today. Our research strategy will focus on better diagnosis and individually tailored treatments, to find the answers for a disease where there are too many unknowns for the future. We will also be making prostate cancer the public issue it needs to be.

The new design reflects our need to present the organisation, and our plans, in a more forceful and confident way. We are raising our voice for men - and we need an identity which will strike a chord with those we need to reach. Our new design, a man composed of many men, 'a man of men', reflects the numbers of men affected by prostate cancer, as well as men coming together to speak up and find solutions. It builds on existing elements but creates something much stronger.

All changes in identity - indeed all change - provokes comment and response. We involved a broad group of people, particularly the men we are here to represent, in the creation of the new look. I have been buoyed by the number of people who have taken the time to let us know they are impressed by the transformation we have made. There are also those who are not so sure. I am just pleased debate is happening around this disease. That is what we need, and we will all have the different views needed to sustain it.

On a very different note - reflecting the ever shifting world of a CEO - I will be on the road for the rest of the week, taking on an epic 007-style race, The Thunderball Rally. I am pleased to be taking part alongside our partner Keyline Builders Merchants, and really proud that this is the first fundraising event for Prostate Cancer UK.

As a twist, the event, which will see us drive across the Swiss alps -without sat nav - to the top of the Bernese Oberland, will be Bond-themed. I will be looking suitably 'shaken not stirred' in a series of Bond-style black tie and jacket outfits. My rally companion, Mark Bishop, our Director of Fundraising, has gamely volunteered to dress as a Bond Girl for the duration. Not exactly the Vesper Lynd of my fantasies, but I am sure it will be an experience - and should raise £100,000 for us overall, which is a fantastic amount.

If you are tempted to sponsor us, please click on the link below. We would be very grateful.

http://uk.virginmoneygiving.com/team/thunderball

I will be updating my blog as we travel, so do check back tomorrow.


Friday, 1 June 2012

Abiraterone - reaching men who need it most

Abiraterone, a clinical sounding term, but one which has entered the vernacular, at least for the hundreds and thousands of men who have prostate cancer.

The breakthrough drug, which extends life with relatively few side effects, for men with advanced forms of the disease, became a symbol last month - a symbol that the tide is turning on the 'oft-quoted' legacy of neglect around this disease.

When the National Institute of Clinical Excellence (NICE) announced it would not make the drug available on the NHS in England and Wales, we picked up the baton for men, determined to see this reversed. We were joined by a natural groundswell of a powerful group of MPs, journalists, clinicians and, of course, men themselves, determined to see this overturned.

Happily, we were able to argue successfully that this decision was the wrong one for men, and that the drug should rightfully be reviewed as an end of life treatment. At the same time the manufacturer also lowered its price. Abiraterone will now be available for men in England and Wales, later on this year. Articles like this one from Jenny Hope, in the Daily Mail show how strongly feeling ran around this - and the level of cooperation and support for the campaign, fuelled, in part, by a collective indignation that men with this disease have had a raw deal for too long. A rare feat indeed.

But the campaign is far from over. With Northern Ireland expected to follow suit, our attentions are now on Scotland, where the Scottish Medicines Consortium (SMC) is refusing to make abiraterone available to the men who need it north of the border.

It was timely, then, that I was in Edinburgh this week, meeting with Scotland’s Deputy First Minister and Health Secretary Nicola Sturgeon MSP to discuss this and other important issues around the disease. Although the Scottish Government would not instruct the SMC to make abiraterone available on the NHS, the Health Secretary did agree to make contact to see if anything can be done to speed up the process (currently due on 13 Aug) and ensure health boards are in a position to get moving should the drug be approved. Good news indeed.

If the past few weeks have taught us anything it is that accepting the status quo is just not acceptable. The rates of prostate cancer diagnosis are rising in the UK - against a backdrop of imperfect tests, complex treatment options that risk unnecessary side effects, and a postcode lottery when it comes to support and information. Nothing short of strident action is needed for the fathers, grandfathers, husbands and best friends this disease affects all too regularly. The victory around abiraterone in England and Wales has to be the beginning - not the 'happy ending'.

Tuesday, 1 May 2012

Surgery in the spotlight

A thorny debate, which has largely been confined to the world of clinical specialists and researchers, recently had a much more public airing. In his exclusive front page article in The Independent, Jeremy Laurance put the wrangle over how best to treat men with localised prostate cancer firmly in an open forum.

His article centred on the early findings of the on-going, and large-scale PIVOT trial, which is exploring how men with prostate cancer who opt for surgery to remove the gland fare in the survival stakes over a decade against those who choose to watch and wait. Preliminary findings, which have looked at 731 men, are both interesting – and a little unsettling. They suggest that taking the surgical route – which can entail some difficult side effects such as incontinence and erectile dysfunction – does not have any significant impact on how long a man with less aggressive forms of the disease will live.

Behind the scenes, surgeons and oncologists have been debating this very question for some time, with the latter suggesting surgery is over used – and not reached a consensus. It would be easy to conclude from these results that the ‘argument’ is over, but it is a little more complicated than this. The PSA blood test, the cornerstone of prostate cancer diagnosis, is unable to detect alone if a man has prostate cancer, let alone if he has an aggressive form of the disease. The development of MRI scans and other techniques means that doctors are becoming more equipped at recognising which tumours pose a real threat, but we are still not in a position where we can diagnose easily and early if a man has a so-called ‘tiger or pussy-cat’. As Jeremy Laurance rightly points out in his accompanying opinion piece, the focus now needs to be on increasing research into diagnostic tools equipped to identify which men with the most common cancer in the UK need more radical treatment. We also need explore more fully strategies like risk-based screening. Only then will we slash the risk of men being unnecessarily treated.

The fact that prostate cancer has been subject to a legacy of neglect is something which is often talked about, and is in danger of losing its impact. But this is a clear example of how under investment in this disease still means uncertainty when it comes to diagnosis and, ultimately, difficult decisions for men who are often in a position of weighing up treatment options. A quick glance at the well-oiled diagnostic route for breast cancer, which has had an extremely successful movement behind it pushing for advances which we need to emulate for men, shows how far behind prostate cancer is.

The other message is that these are early results, and practice in the UK has evolved since the trial began in 1994. Watchful waiting, which is the comparator to surgery in this study, is now only offered to men who are not healthy enough to have other treatments. Anyone diagnosed with low-risk early prostate cancer will be offered surgery, radiotherapy or active surveillance, which does not involve treatment but tumours are regularly monitored and only treated where necessary. A large study in the UK, the ProtecT trial, is looking to see which of these treatments is best, and will report in 2016.

Men about to undergo surgery will no doubt read these results with interest and some trepidation. Any decision around treatment needs informing with expert opinion, and we urge men to discuss their options and any concerns with their clinician. From what they tell us, many men opt for surgery as they simply want to remove the tumour – and any risk – from their body. This is why many develop a powerful bond with their surgeon. Until there is conclusive evidence otherwise, and until there is a better way of separating the aggressive and non-aggressive forms of the disease, surgery, despite its potential pitfalls and side-effects, will remain a valid option for many men.

Prostate cancer is, admittedly a complex disease and way too many men are facing complicated decisions without adequate support. However, its complexity does not mean we should ignore these or other research findings, or worse increase variation in practice. The clinical community has a responsibility to identify what ‘good treatment’ looks like, and it is critical that oncology and surgical teams work together for the benefit of men – not treat them as an interesting debate point.

Anyone wanting to discuss treatment options can call our confidential Helpline, which is staffed by specialist nurses, on 0800 074 8383.