Eastenders, Stan Carter, and the choices we make

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Robert Frost, The Road not Taken

These days many of us take choice for granted. In the spare second I get away from the office, I can switch on the TV and choose from hundreds of different channels to flick through. My father at my age probably only had the choice of watching one of three channels, and my grandfather would most likely have spent most of his spare time trying to secure a decent radio signal.

For obvious reasons, I’ve been choosing to watch EastEnders on BBC One this week. We’ve been working with the BBC – strictly under wraps – for several months, providing support and guidance on Stan Carter’s prostate cancer storyline. In case you missed it, you can catch up on iPlayer.

Stan party

Stan chose not to tell his family that he had prostate cancer for a long time. He didn’t know how they’d handle the news, and he didn’t want to worry them.

“How long have you known, Stan?“

“Long enough.”

“What does that mean? Months?

“Three years if you wanna know.”

Many of you expressed your sympathy for Stan living with his diagnosis on his own for three years. A prostate cancer diagnosis can be earth-shattering and there’s always going to be a lot to come to terms with. Men forced into this position can often feel like they should take on the strong and silent role. Think John Wayne taking a gut full of iron before manfully riding out one last time. I can empathise with that. I prefer to deal with things myself than call in the troops, and I’d rather get lost or take a ‘scenic diversion’ than ask for directions if I can possibly get away with it. I bet there are a few men reading this now who know what I’m talking about. Women too.

The EastEnders cast and crew have done sterling work breaking down barriers around an issue that’s still hampered by a lack of awareness and understanding.

Here’s what you’ve had to say about this over the last few days:

No one should have to face prostate cancer, and the difficult decisions it brings, alone. We’re there to support men like Stan every step of the way. You can speak to our Specialists Nurses on 0800 074 8383, or using our live chat service; chat to men who’ve been there, done that and got the t-shirt through our one-to-one support. You can find out all you need to know about prostate cancer, from diagnosis to end of life care using our Information Standard accredited booklets and online resources, and get support on your own patch, through our community support services.

Our community support aims to help improve men and their families’ whole wellbeing, including support for emotional and psychological needs, physical activity, nutrition and complementary therapies. By the end of March this year, we’d teamed up with over 50 community-based organisations to deliver more than 60 projects across the UK – and by the end of August, our community support teams had reached 14,993 people in local areas. For Stan, whose prostate cancer is at an advanced stage, one of the choices he had to make was whether or not to continue treatment and have chemotherapy.

“There must be something they can do. Chemo?”

“I’m not putting my body through that. Not at my age” Stan sitting

Understandably, Stan’s decision stirred up a lot of emotion:

But whether you agree with him or not, Stan has the right to choose how he wants to be treated. If he (and men in his position) decide the disadvantages of treatment on offer outweigh the benefits then who are we to argue? That right to choose how they are treated is something all men should have and it sure as hell shouldn’t be decided for them by where they live.

Last week, the first National Prostate Cancer Audit report showed up some truly disturbing gaps in prostate care in parts of England and Wales. Only 50 per cent of NHS trusts in England and 60 per cent of hospitals in Wales provide all the personal support services a man needs after prostate cancer treatment.

NICE may say that high-dose rate brachytherapy combined with external beam radiotherapy should be an option available for men with intermediate and high-risk localised or locally advanced prostate cancer, but only 11 of the 54 radiation centres in England offer this. And it’s not available at all in Wales.

That sit well with you? It doesn’t with me, and I know it doesn’t with the hundreds of thousands of people in the UK who have signed up to Men United. Each time I sit down in front of one of the leaders of our current healthcare system – usually in a little room in Whitehall – I know I’ve got 10,000 more people standing right behind me than the last time I spoke.

Stan’s choices are limited by the progression of his prostate cancer. Our leaders’ choices are shrinking due to the strength and growing voice of our movement for men. They’re at a fork in the road with two options ahead. Continue down the same care-worn path of putting men’s health on the back seat, or take a step onto the road not taken – a bumpier track, granted – but one that leads to a better future for men. I know which way I’m headed.

Sign up to Men United.

Going global – the True NTH programme

It doesn’t take long – three to four minutes of the evening news should do it – to realise just how disjointed and isolated we can be as a species. Our countries have never been better connected in terms of technology, but in many respects we’re just as distant as when travelling between continents involved months at sea.

Take prostate cancer as an example. Each year, hundreds of thousands of men across the globe are diagnosed with prostate cancer, and the many who survive it often experience significant side-effects from treatment. Incontinence, loss of sexual function, and fatigue to name just a few. Experts in each country battle on a daily basis to improve the lives of these men, but their learnings – both good and bad – sometimes don’t travel further than the local hospital they’re developed in.

With this very problem in mind, the Movember Foundation have launched True NTH, a global programme designed to trial and implement new ways of significantly improving the lives of men (and their partners) living with prostate cancer. Crucially, the aim is to collaborate internationally, and develop and perfect programmes that can be rolled out anywhere in the world.

True NTH

The True NTH programme will make a huge difference to the lives of men living with prostate cancer.

A worldwide network, True NTH consists of 77 leading global experts from 23 difference organisations from the UK, Australia, New Zealand, Canada, and the USA. Prostate Cancer UK is leading on five projects funded by the Movember Foundation that are looking to improve prostate cancer care and support in these four areas:

  • Better treatment decisions for men
  • Exercise and diet
  • Supported self management (helping men to manage their own recovery)
  • Improving continence (both bowel and urinary)

These projects aim to provide practical, cost-effective solutions to everyday problems faced by many of the 250,000 men living with the disease in the UK.

The Movember Foundation is a global force to be reckoned with. In 330 days – one month of activity per year for the last 11 years – Movember have raised over £346 million across the globe. People often associate fortitude and determination with a stiff upper lip, but the Movember Foundation are proving that a hairy one can be just as formidable. I am proud to be working with the Movember Foundation in the UK, and look forward to report back on the progress of True NTH in the coming months.

Royal Mail and Prostate Cancer UK: a partnership to be proud of

When you received a letter in the post in the last two years, chances are you’ll have seen a simple message in the postmark: Royal Mail is supporting Prostate Cancer UK. That statement of fact, franked onto millions of letters across the UK, still makes me smile two years later.

I remember distinctly the first time I had a letter land on my doormat at home that had this special postmark stamped on the top right corner. It wasn’t the first time I’d seen it of course, but these things always look better in the flesh, and it reinforced how lucky we were to have landed such a huge and influential partner in the Royal Mail.

Dr Fox models the Royal Mail poststamp

Neil Fox models the Royal Mail Prostate Cancer UK postmark

Royal Mail was our first major corporate partner as Prostate Cancer UK, and they helped us launch our new identity. For many people, seeing our logo on their post may have been the first time they had heard of us. Our identity as the largest men’s health charity in the UK has skyrocketed over the last few years (in this year’s Third Sector Charity Brand Index we’re 29 out of 150; in 2011 we weren’t even on the list) and it was Royal Mail who helped light the fuse. That’s some legacy.

Friday 29 August was the last day of this special partnership, and I would like to thank all 150,000 members of staff at Royal Mail for all they have done for us and for men over the past two years. Royal Mail have put everything into this partnership, and through their endeavours, have raised over £2.3 million with match-funding to fund 34 specialist prostate cancer nurses to provide men with support in communities across the UK. You read that correctly: £2.3 million.

Royal Mail staff take on the gruelling Lands End to John O'Groats for Prostate Cancer UK

Royal Mail staff take on the gruelling Lands End to John O’Groats for Prostate Cancer UK

How did they raise such a colossal amount of money? How didn’t they would be an easier question. I’ve rarely seen such levels of engagement with a workforce this big. From simple ideas like the Give a Quid days, which raised over £70,000, to full on challenges, like the Graduate Challenge programmes, which brought in almost £150,000, the staff of Royal Mail just kept on giving their time, money, and commitment to making a better future for men. The Royal Mail Choir, made famous through the BBC programme, even released a charity single.

Graduates

Royal Mail graduates arrive at the Prostate Cancer UK London office having cycled from Cardiff

It wasn’t just money that was raised through our partnership with Royal Mail, they helped us spread awareness of prostate cancer across the UK (including within their own workforce). Through taking part in our awareness campaigns such as the Sledgehammer Fund and Men United v prostate cancer, and distributing thousands of our Know your prostate guides, they’ve helped us increase the understanding and awareness of this horrible disease.

Royal Mail take a sledgehammer to prostate cancer

Royal Mail take a sledgehammer to prostate cancer

With partnerships as strong as these, now and in the future, I’m confident that we will crack prostate cancer. On behalf of Prostate Cancer UK, thank you to everyone at Royal Mail for all your hard work and support. You have made a real difference to the lives of men with prostate cancer, and there’s no better tribute than that.

Men United v Prostate Cancer

Bill Bailey and Men United

Bill Bailey is spearheading our Men United campaign

For many men in the UK, today is just another ordinary day. They’ll be getting up for work, slowly making their way to the office – it is a Friday after all – and getting on with working through just one more day before the weekend. But for around 100 men today, the next 24 hours will be indelibly scorched into their memories as the day they found out they had prostate cancer. It’s for these men – the 40,000 men diagnosed every year, the 10,000 who die, and the 250,000 men currently living with the disease – that we fight. Continue reading

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.

On the agenda – the media in the spotlight

I have another confession (who knew a blog could be so cathartic?). And in the light of the events of the last few weeks this one may be even more shocking but the truth will out…… I was once a journalist.

Before we go any further I should make clear the scale of my credentials as a journo. Before going to college, I was a cub reporter for Mid Anglia Newspapers Group, writing copy for such weekly publications as the Royston Crow and the Saffron Walden Reporter. There was no phone hacking, although I do remember that I once bought some Jammie Dodgers for my weekly visit to the local police inspector. But, I can assure you this was not intended as a bribe.

Like most other people, I have been amazed by the events of the last few weeks. The speed and scale of the ‘hacking’ story has been breathtaking, and was all the more compelling with the advent of Twitter. It is fascinating that one of the fastest-moving and most intriguing media stories of recent years is about the media – you couldn’t make it up! I believe that here is an opportunity for some positive change to come out of the negative things that have happened. However, I would argue that despite the nefarious means of the few, the media can be a force for good. It is vital, particularly in a land famed for the freedom of its press, that the ensuing debate on the way forward for the media does not lose sight of this.

Last week I attended the Medical Journalists Association Awards. (At this point, I should say massive congratulations to The Prostate Cancer Charity’s Media and PR Team, which was nominated for Health Charity of the Year for the third year in a row)! The purpose of the awards is to celebrate the work of medical journalists working in the mainstream and specialist areas of print and broadcast media. It illustrated to me that we need to be really careful that we do not tar all journalists with the brush of corruption, when in fact many of them see journalism as a vocation to cast light on injustice, educate people, challenge the status quo with a powerful voice and operate with real commitment and integrity. Although the News of the World may have taken their methods too far, there will always be a place in the British media for revealing hypocrisy and inequity.

Little more than five years ago prostate cancer was shrouded in taboo, men reported the worst NHS experience of all common cancers and recognition of the scale of the disease, which as we know kills one man every hour, was shockingly low. Investment in research was also woeful compared to other cancers, and that is putting it mildly.

Today – although many challenges remain in the bid to do for men what has happened so successfully for women’s cancers – there has been some progress. Men’s experience of prostate cancer has improved significantly. Awareness that this disease is the most common cancer in men in the UK has shot up by more than 40 per cent in a decade, in the general population, but also in men over 50, the group we so need to sit up and take note that prostate cancer is relevant to them.

In the absence of concerted paid for advertising, this progress can, in no small way, be attributable to the support of the media. To give one example, when a potentially seismic research study emerged about the Prostate Specific Antigen (PSA) test, the intelligent and balanced coverage, including a front page story in the Daily Telegraph, was one of the drivers of a full review by the National Screening Committee of its utility as the basis of a screening programme. The media can set wheels in motion like nothing else – and do it with the right intention to champion, challenge and improve. Coverage around the disease, and the Charity, whether celebrity driven or research-focussed, increased by more than 150 per cent last year alone. Even more impressive is that fact that our evaluation tells us at least 40 per cent of men over 50 recall seeing something about prostate cancer in the media each quarter – showing it is having an impact. Tales of them making a life-saving visit to a GP following an article on the disease are legion.

We can never rest on our laurels. As well as keeping up the pressure on awareness, enabling men to take control of their health, we need to keep the disease on the media agenda. In a climate where the psychological impact of prostate cancer on men and their families is not fully understood or supported, men still face barriers to having a PSA test and, critically, not enough investment is made in finding a new generation of test which does not put men at such risk of unnecessary and invasive treatments there is a long way to go.

It strikes me that in the new world that will hopefully emerge from the current crisis there is an opportunity to continue to get the message out there. This does mean that we need to work even harder to not only engage with all journalists but to find new ways of making our messages clear, hard-hitting, as well as informative, whether these are delivered as part of a celebrity-backed campaign to design ‘pants’ for us or as part of a headline-grabbing inequity story. We also need to campaign hard, hand in hand with the media, for the improvements men with prostate cancer rightfully deserve.